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RESEARCH METHDOLOGY
Year : 2011  |  Volume : 2  |  Issue : 4  |  Page : 137-144

Patient-reported outcomes: A new era in clinical research

Prasanna R Deshpande, Surulivel Rajan, B Lakshmi Sudeepthi, CP Abdul Nazir
Department of Pharmacy Practice, Manipal College of Pharmaceutical Sciences, Manipal, India

Date of Web Publication31-Oct-2011

Correspondence Address:
Prasanna R Deshpande
Department of Pharmacy Practice, Manipal College of Pharmaceutical Sciences, Manipal University, Manipal - 576 104
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2229-3485.86879

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   Abstract 

Now-a-days there is significant discussion about patient-reported outcomes (PRO) in medical world. The following article covers almost all the areas of PRO including-their importance, important concepts for understanding of PRO, significance, ideal properties, types, development and evaluation of PRO instruments. It is useful for physicians, pharmacists and patients for the assessment and improvement of the therapy.

Keywords: Patient reported outcomes, clinical research, PRO, quality of life


How to cite this article:
Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2:137-44

How to cite this URL:
Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res [serial online] 2011 [cited 2020 Oct 23];2:137-44. Available from: https://www.picronline.org/text.asp?2011/2/4/137/86879


   Introduction Top


'Patient' can be considered as the centre for any healthcare system. Now-a-days there is growing realization for the patient-centered healthcare system. [1] The outcomes of a clinical intervention obtained by the patient i.e. patient-reported outcomes (PROs) are seemed to be of more importance in future than any other outcomes like clinical, physiological or caregiver-reported. As per studies, enhanced treatment adherence and outcomes can be obtained by giving attention to patient feedback on healthcare outcomes and patient behavior change. [2]

As per US-FDA, a PRO is any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. [3]


   Importance of PRO Top


Though medical technology allows to measure physical, physiological or biochemical data of the patient; it is not able to give all the data about the treatment or the disease. Some data can be obtained only from the patient. Such data includes the things as mentioned in [Table 1]. [4]
Table 1: Data can only be obtained from the patient

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In short, patient can tell many things like thoughts, complaints, opinions that technology or any observer can't and which is actually more valuable. As discussed earlier PRO are the measurements come directly from the patient. Further to add, in some diseases survival is not the ultimate goal of the treatment but quality of life also plays an essential role in the treatment. E.g. Cancer chemotherapy. [5] Therefore, PROs are gaining the importance in clinical world.


   PRO and Other Types of Outcomes Top


The outcomes are broadly classified into- clinical (e.g. cure, survival), humanistic (e.g. role performance, emotional status) and economical (e.g. expenses, saving). [6] In clinical scenario the outcomes can be clinician reported (e.g. performance of the patient), caregiver reported (e.g. functional status), physiologic (e.g. tumor size by using MRI) or patient reported (e.g. symptoms). If the patient is observed for the outcomes by clinician, researcher or caregiver then the outcomes become observer reported outcomes (OROs). [4] If the patient is revealing in the written questionnaire that he/she is experiencing morning stiffness is PRO but if the clinician is asking to describe about the morning stiffness i.e. severity and nature is considered to be ORO.

Proxy reported outcome is a measurement based on the reportby someone other than the patient reporting as if he or she is the patient. It is different from a PRO or ORO. [3]


   Difference Between Symptoms and Health Related Quality of Life Top


Although symptoms of the patient and health related quality of life (HRQOL) hear to be similar, they are the two different concepts. Symptom is a one-dimensional property while HRQOL is multidimensional. Symptoms are often main objective of treatment, mirror clinician-patient discourse and vary dynamically with time but in case of HRQOL all the above things are rarely. Symptoms are directly related to disease and treatment effect while there is indirect relation of them with HRQOL. In case of PRO concepts symptoms are often considered for behavioral objective measure but seldom for HRQOL. Complexity of the concepts is complex in HRQOL and simple in case of symptoms. [7]


   Important Concepts Top


Prior to know about PRO one should be familiar with the following concepts:

PRO instrument

A PRO instrument (i.e., a questionnaireplus the information and documentation that support its use) is a means to capture PRO data used to measure treatment benefitor risk in medical product clinical trials. [3]

PRO concept

It is nothing but the thing or event being measured. It can be called as the specific goal of the instrument. [3]

e.g. symptom or group of symptoms

PRO domain

A subconcept represented by a score of an instrument that measures a larger concept comprised of multiple domains. [3]

e.g. depression

PRO item

An individual question, statement, or task (and its standardized response options) that is evaluated by the patient to address a particular concept. [3]

e.g. Are you feeling depressed?

Conceptual framework

The conceptual framework explicitly defines the concepts measured by the instrument in a diagram that presents a description of the relationships between items, domain (sub-concepts) and concepts measured and the scores produced by a PRO instrument [Figure 1]. [3]
Figure 1: Conceptual framework in PRO instrument

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Endpoint

The measurement that will be statistically compared among treatment groups to assess the effect of treatment and that corresponds with the clinical trial's objectives, design, and data analysis. [3]

End point model

A diagram of the hierarchy of relationships among all endpoints, both PRO and non-PRO, that corresponds to the clinical trial's objectives, design, and data analysis plan [Figure 2]. [3]
Figure 2: End-point model

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Conceptual equivalence

It is the equivalence in relevance and meaning of the concepts being measured in different languages and /or cultures. [8]

Health Related Quality of Life

In simple words HRQOL can be defined as personal health status of the individual. [9] Actually, it is a multi-domain concept which represents the patient's general perception of the effect of illness and treatment on various aspects of life such as physical, psychological, and social. [3] Some other aspects also can be predicted to affect HRQOL like- economical, disease symptoms, adverse drug reactions, patient-education, disease-treatment given to the patient [Figure 3].
Figure 3: Factors affecting health related quality of life

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   Ideal Properties of PRO Instrument Top


As per the literature, [3],[9] following ideal properties can be extracted-

  • It should be specific to the concept being measured.
  • It should be based on end-point model.
  • It should have conceptual equivalence.
  • It should be based on the conceptual framework.
  • It should contain optimum number of items.
  • It should have easy and specific measurement properties i.e. use of the scales which is easiest for the intended population to understand.
  • It should have proper evidences for the conceptual framework.
  • It should maintain the confidentiality of the patient.
  • It should be reproducible.



   Significance of PRO Instruments Top


By using PRO, various types of outcomes can be measured such as physical functions, symptoms, global judgments of health, psychological well-being, social well-being, cognitive functioning, role activities, personal constructs, satisfaction with care, [10] health related quality of life (HRQOL), [11] adherence to medical regimens [12] and clinical trial outcomes. [10]

PROs may be helpful in determination of the eligibility of the patient for certain clinical trials. E.g. Inclusion criterion for the trial is female patients with hot flashes. PROs can be used for confirmation of the measures. E.g. patients with morning stiffness are most likely to be suffered from rheumatoid disease. PROs can help to interpret other measures and also help to eliminate other possibilities. E.g. If the patient has breathlessness and the patient is a smoker then COPD can be expected rather than anemia. PROs are useful in determination of patient compliance or reasons for non-compliance. E.g. Are the side effects so severe? PROs may be used as study endpoint. E.g. Efficacy of analgesic drug by determining pain levels. [4]

In diseases like cancer it is important to determine the quality of life of the patient as patients with progression of cancer frequently experience multiple symptoms, economical burden, home management problems and lack of emotional well-being, all of which can adversely affect quality of life. [13] PROs are helpful in the determination of quality of life in cancer patients. Role of QOL/PROs in cancer care can be considered in the following conditions like [14]

  • Determination of negative effects of the adjuvant therapy
  • Identification of the needs for the supportive care
  • Comparison of two standard therapies having similar survival outcomes
  • Identification of negative effects of the therapy when survival time is long
  • To find out whether a new therapy is preferable to standard therapy
  • To determine whether a therapeutic regimen is better than supportive care only, when survival time is short
  • Targeting problems and making the communication easier in clinical practice


As PRO instruments are based upon the scores obtained by the patient without any interpretation; it gives a clear picture about the patient condition. PROs are useful for the patients, patient-family members and loved ones, healthcare providers, payers, regulatory authorities, technological assessors and researchers. PROs are beneficial for the patients as he/she asks for and experience the treatment. It is useful for patient family members and loved ones as they desire the best for the patient and themselves. The PRO data is also useful for healthcare providers and payers as they make a decision with patients on prescribing of treatments/therapy and pay for the treatment respectively. Information obtained from PRO can also be used by regulatory authorities (e.g. FDA) and technology assessors [e.g. National institute for health and clinical excellence (NICE)]. PRO studies make the consequences of the studies accessible through various publications like formulary submission dossiers, direct to consumer advertisements, journals and continuing medical educations (CME). [9],[15],[16]

Conclusively, PROs are unique indicators of impact of disease on the patient, helpful in empowerment of the patients, necessary for determination of efficacy of the treatment, by communication helpful in creating a rapport between patient and healthcare providers, useful in the interpretation of clinical outcomes and treatment decision making. [9]


   Types of PRO Instruments Top


Broadly, PRO instruments can be classified as per the measurement of the interested concept as [10],[17]

  • Generic (anticipated to detain a very wide variety of aspects of health status and the outcomes of illness and hence to be applicable to a wide range of patient groups) e.g. Psychological General Well-Being Index (PGWBI)
  • Disease specific e.g. Rheumatoid Arthritis Quality of Life questionnaire (RAQoL)
  • Dimension specific e.g. Physical Activity Index (PAI)
  • Region/site specific e.g. Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR)
  • Individualized (instruments in which the respondent is allowed to select issues, concerns or domains of personal concern that are not predetermined by the investigator's list of questionnaire items) e.g. Schedule for the Evaluation of Individual Quality of Life (SEIQoL)
  • Utility measures (considered as generic type but with one particular form of numerical evaluation of healthiness) e.g. Utility measure for major, unipolar depression (McSad)
  • Summary items e.g. questions (regarding limiting enduring illness) in General Household Survey

    All types of PROs have their own advantages and disadvantages.



   Development of PRO Instrument Top


As per US-FDA, [3] [Figure 4] there are five steps for the development of a PRO instrument. First, there will be theorization of a conceptual network. It may include outlining of potential claims and hypothesized concepts, determination of intended population and application i.e. scores, mode and frequency of administration, performance of expert/literature review, development of the framework, assignment of PROs in preliminary endpoint model and documentation of the preliminary instrument.
Figure 4: Development of PRO instrument

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The second step may include finding of the patient inputs, making of new items, assortment of recall period, response options and format, selection of mode of administration and data collection, conduction of patient cognitive discussion, pilot testing of the outlined instrument and documentation of content validity.

Third step may include the following-confirmation, assessment and finalization of the instrument, documentation of measurement progress. In assessment of the score reliability, construct validity and ability to detect change will be done.

Fourth step may contain- preparation of protocol and SAP (statistical analysis plan), compilation and analysis of data, assessment of treatment response (by means of responder definition and cumulative distribution), documentation of interpretation of treatment advantage (in relation to claim).

Fifth and last step in the development of the instrument is modification of the instrument which include- altering of phrasing of items, population response options and mode of administration, translation and culturally adaptation of the instrument, evaluation and documentation of the changes.


   Administration of PRO Instrument and Data Collection Top


Data collection by using a PRO instrument can be done in three ways [3] as by interview, self administration or combination of both. Live interviews may happen in person or by means of communication medium. Every method has its own positive and negative aspects. [4]


   Response Scales Top


It is a set of answer choices that fall into an order e.g. from highest to lowest. A scale may be composed of pictures, numbers or categories. [4] Following types of response scales or options may be used in a PRO instrument. [3] The response scales are mentioned with example in the [Table 2].
Table 2: Types of response scales

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Recording of events is also one of the methods to determine the response that can be included by the patient. E.g. dairy maintained by the patient for the episodes of urination in night.


   Evaluation of PRO Top


For the evaluation of a PRO instrument following things may be checked [3]

  • Validity

    Content validity

    Construct validity

    Criterion validity
  • Reliability

    Test-retest or intra-interviewer reliability

    Internal consistency

    Inter-interviewer variability
  • Ability to detect change


Validity

It is the degree to which evidence and theory support the interpretations of test scores entailed by the proposed uses of tests. [18] Validity is not the property of the instrument i.e. PRO instrument but of instrument scores and their interpretations. [18],[19] Therefore, validity must be established for all proposed interpretation.

Content validity

It is the extent to which the instrument measures the concept of interest. [3] Content validity of the instrument can be performed qualitatively as well as quantitatively. [20] According to US-FDA(1), following attributes can be checked- item generation, data collection method and instrument administration mode, recall period, response options, instrument format instruction and training, patient cognition, scoring items and domains, respondent and administrator burden. The instrument should have proper evidence in the literature linking between concept being measured by the instrument and targeted claims. [3],[20] Quantitative analysis of the items is also desirable and helpful. [20] E.g. evaluation of how well items deal with complete continuum of patient experiences. Item response theory (IRT) and Rasch analysis can be used to evaluate item information curves and what fraction of the response continuum items address. [21],[22]

IRT is a powerful tool for the evaluation of the questionnaire (PRO instrument) both at item and scale levels and tailors use of the same to the patients. [23] Some important methodological considerations for IRT modeling are [24]

  • Should IRT methods be used by the researcher for the questionnaire?
  • Which IRT model should be used?
  • What sample size is needed for IRT analysis?


Rasch model is the only IRT model in which a person is characterized totally by the total score across the questions/items. Further to add, it is the simplest of such models having least number of the parameters for the person and only one constraint for each category of an item. It may be used to verify the degree to which scoring and summing is justifiable in the collected data and how well the information fit in the model. [25]

Construct validity

It is defined as evidence that relationships among concepts, domains and items conform to a priori hypotheses concerning logical relationships that should exist with other measures or characteristics of patients and patient groups. [3] It includes convergent, divergent and known groups' validity. In construct validity, measures of constructs theoretically should be related to each other and should in fact observe to be related to each other. In the similar way, in discriminant validity, one should be able to discriminate between dissimilar constructs. [26] In known groups' validity, evidence for the thing that the instrument can differentiate between clinically distinct groups is checked. [3]

Criterion validity

It is nothing but the extent to which the scores of a PRO instrument are related to a known gold standard measure of the same concept. [3]

Here, the performance of the operationalization is checked against some criterion. In content validity, the criteria are the construct definition itself i.e. it is the direct judgment while in criterion validity, often there is a prediction about how the operationalization will perform based on the theory of construct. It may be of two types as "predictive" and "concurrent". In the former one there is assessment of the ability to predict something in the real world which is present theoretically. For instance, if there is measurement of slowness of movement in Parkinson's disease, we could give our measure to the respective patients and see if there is a high correlation between the scores and the degree of slowness. The presence of high correlation makes available an evidence for "predictive validity". In concurrent validity, there is assessment of the ability of the item to distinguish between the groups in real world as mentioned theoretically. E.g. in the assessment of breathlessness, the item should be able to distinguish between asthma and COPD. [26]

Practically, it is difficult to determine the criterion validity as there is no gold standard for most PROs. [3]

Reliability

It is the ability of a PRO instrument to yield reproducible and consistent estimates of true treatment effect. [3] It is a necessary (but not adequate) component of validity. [27],[28] To establish the reliability of the scores before using the PRO-instrument in practice, it is necessary that there should be sufficient accrual of evidence. [29] It can be predicted by three ways as 1) test-retest reliability- it is a measure of the ability of a psychologic testing instrument to yield the same result for a single Patient at 2 different test periods, which are closely spaced so that any variation detected reflects reliability of the instrument rather than changes in the Patient's status. [30] It may be considered as intra-interviewer reliability for interviewer administered PROs. This type of reliability is checked by intra-class correlation coefficient (ICC). [3] As per the generic definition ICC is the ratio of true variance i.e. the variability between the targets and observed variance i.e. the total variance-true variance plus other variance.Time period between test and retest is an important factor here. 2) Internal consistency-The consistency of the results delivered in a test, ensuring that the various items measuring the different constructs deliver consistent scores. [31] Internal consistency is determined with Cronbach's alpha. Cronbach's alpha is coefficient of reliability. [32] It is defined as [33]



Where, K = the number of items

= the variance of the observed total test scores

= the variance of component i for the current sample of persons

The α value theoretically ranges from 0 to 1. The value of ≥0.7 is considered to be optimum. Item-total correlation is yet another test that may be considered for internal consistency. It is the measure of the association between an item and the total score from the set of the items within the scale. [34] It can be measured by using Pearson correlation coefficient. If the value of the Pearson correlation coefficient is high then stronger is the relationship between the items. 3) Inter-interviewer reliability - It determines the changes in the results when the instrument is administered by two or more interviewers. It is generally measured by Pearson's 'r' value.

Ability to detect the change

It is considered to be an important part in the evaluation of PRO instrument. The instrument should be able to detect the changes in the expected outcomes. For instance if there is an instrument which is determining the quality of life of breast cancer patient, then it should be able to predict the quality of life after the treatment. The quality of life score should be able to predict the improvement/stability in condition/worsening. Ability of the instrument to detect the changes may be affected by the various factors as per the type and concept to be determined. [3]


   Electronic PRO Top


Here the outcomes of the patients are collected by using electronic methods like electronic diaries, computers, telephones etc. The use of Electronic PRO (e-PRO) are found to be beneficial than paper based PRO. [35] e-PROs avoid data entry errors, give immediate access to data, enable to trigger alerts/notifications, reduce the missing information as compared to paper-based PRO, increase patient's willingness to report sensitive information. Further to add, data obtained from e-PRO gives real-time tracking of survey compliance. Some important barriers in use of e-PRO are- increased expense, limited time for patient-training and infrastructure study site. There may be some cultural resistance for the administration of electronic instrument. [36]

The use of e-PRO was found to successful in various recent clinical trials. [37],[38]


   Summary Top


  • Important concepts to be known - PRO, Concept, Domain, Item, End-point model, Conceptual framework, Conceptual equivalence, HRQOL
  • Ideal properties of PRO instrument - Concept specific, End-point model, Based on conceptual framework, Optimum number of items, Reproducibility, Easy accessibility of scales by patients, Availability of proper evidence, Conceptual equivalence, Maintenance of confidentiality.
  • Types of PRO instruments - Generic, Disease specific, Dimension specific, Region specific, individualized, Utility measures, Survey items
  • Development of PRO instrument- (Steps)
    • Theorization of a conceptual framework;
    • Adjustment of the conceptual framework and outlining instrument;
    • Authentication of the framework and evaluation of further measurement properties;
    • Assemble, examine and interpret data;
    • Adapt the PRO instrument
  • Types of response scales - Likert scale, visual analog scale (VAS), Anchored VAS, Pictorial scale, Rating scale, Checklist
  • Evaluation of PRO instrument-
    • Validity - Content, Construct, Criterion;
    • Reliability - Test-retest reliability, internal consistency, inter-interviewer reliability
    • Ability to detect change


 
   References Top

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    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4]
 
 
    Tables

  [Table 1], [Table 2]


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Jessica A. Walsh,Marilyn T. Wan,Christine Willinger,M. Elaine Husni,Jose U. Scher,Soumya M. Reddy,Alexis Ogdie
The Journal of Rheumatology. 2020; 47(10): 1496
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3 Preoperative psychometric properties of visual analog scale asessments for function, pain, and strength compared with legacy upper extremity outcome measures in glenohumeral osteoarthritis
Alexander Beletsky,Yining Lu,Benedict U. Nwachukwu,Evan Polce,Bhargavi Maheshwer,Jorge Chahla,Brian Forsythe,Brian J. Cole,Nikhil N. Verma
JSES International. 2020;
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4 Telephone health coaching with exercise monitoring using wearable activity trackers (TeGeCoach) for improving walking impairment in peripheral artery disease: study protocol for a randomised controlled trial and economic evaluation
Farhad Rezvani,Dirk Heider,Martin Härter,Hans-Helmut König,Frank Bienert,Julia Brinkmann,Lutz Herbarth,Edith Kramer,Patrick Steinisch,Frank Freudenstein,René Terhalle,Yvonne Grosse,Susanne Bock,Jacqueline Posselt,Corinna Beutel,Franziska Reif,Florian Kirchhoff,Carolin Neuschwander,Franziska Löffler,Lisa Brunner,Patrick Dickmeis,Thomas Heidenthal,Lara Schmitz,Daniela Patricia Chase,Claudia Seelenmeyer,Mark Dominik Alscher,Uwe Tegtbur,Jörg Dirmaier
BMJ Open. 2020; 10(6): e032146
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5 Factors Related to Agreement Between Child and Caregiver Report of Child Functioning With Chronic Pain
Kathryn A. Birnie,Patricia A. Richardson,Adithi V. Rajagopalan,Rashmi P. Bhandari
The Clinical Journal of Pain. 2020; 36(3): 203
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6 A call for consensus in defining efficacy in clinical trials for opioid addiction: combined results from a systematic review and qualitative study in patients receiving pharmacological assisted therapy for opioid use disorder
Brittany B. Dennis,Nitika Sanger,Monica Bawor,Leen Naji,Carolyn Plater,Andrew Worster,Julia Woo,Anuja Bhalerao,Natasha Baptist-Mohseni,Alannah Hillmer,Danielle Rice,Kim Corace,Brian Hutton,Peter Tugwell,Lehana Thabane,Zainab Samaan
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7 Role of Postoperative Patient-Reported Outcomes to Predict Ankle Arthroplasty and Arthrodesis Revision
Sameer Desai,Jason M. Sutherland,Alastair Younger,Murray Penner,Andrea Veljkovic,Fardowsa Yusuf,Kevin Wing
Foot & Ankle International. 2020; 41(1): 10
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8 Practical Guide to Assessment of Patient-Reported Outcomes
Giana H. Davidson,Jason S. Haukoos,Liane S. Feldman
JAMA Surgery. 2020;
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9 Palliative Liver Radiotherapy (RT) for Symptomatic Hepatocellular Carcinoma (HCC)
Cynthia S. Y. Yeung,C. L. Chiang,Natalie S. M. Wong,S. K. Ha,K. S. Tsang,Connie H. M. Ho,B. Wang,Venus W. Y. Lee,Mark K. H. Chan,Francis A. S. Lee
Scientific Reports. 2020; 10(1)
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10 Integrating Spinal Cord Injury – Quality of Life instruments into rehabilitation: Implementation science to guide adoption of patient-reported outcome measures
Kristian P. Nitsch,Kelsey Stipp,Kristen Gracz,Linda Ehrlich-Jones,Ian D. Graham,Allen W. Heinemann
The Journal of Spinal Cord Medicine. 2020; : 1
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11 Exercise therapies for preventing or treating aromatase inhibitor-induced musculoskeletal symptoms in early breast cancer
Kate E Roberts,Kirsty Rickett,Sophie Feng,Dimitrios Vagenas,Natasha E Woodward
Cochrane Database of Systematic Reviews. 2020;
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12 Can PROMIS domains of pain and physical functioning detect changes in health over time for children with sickle cell disease?
Ashima Singh,Mahua Dasgupta,Pippa M. Simpson,David C. Brousseau,Julie A. Panepinto
Pediatric Blood & Cancer. 2020;
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13 Self-rated health scores predict mortality among people with type 2 diabetes differently across three different country groupings: findings from the ADVANCE and ADVANCE-ON trials
X. Hua,T. W. C. Lung,M. Woodward,J. A. Salomon,P. Hamet,S. B. Harrap,G. Mancia,N. Poulter,J. Chalmers,P. M. Clarke
Diabetic Medicine. 2020;
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14 Determination of Normative Kerlan-Jobe Orthopaedic Clinic Scores in College and Junior Tennis Players
Natalie L. Myers,Alexis F. Walker,Duane V. Knudson
Athletic Training & Sports Health Care. 2020;
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15 Effect of Different Iodine Concentrations on Patient-Reported Discomfort in Contrast-Enhanced Computed Tomography: A Prospective Comparative Trial
Janis Lucas Vahldiek,Lars-Arne Schaafs,Birgit K. Niehues,Bernd Hamm,Stefan Markus Niehues
RöFo - Fortschritte auf dem Gebiet der Röntgenstrahlen und der bildgebenden Verfahren. 2020; 192(10): 945
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16 The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings
Pernille C. Skovlund,Sissel Ravn,Lene Seibaek,Henriette Vind Thaysen,Kirsten Lomborg,Berit Kjærside Nielsen
Journal of Patient-Reported Outcomes. 2020; 4(1)
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17 Patterns of Anthracycline-Based Chemotherapy-Induced Adverse Drug Reactions and Their Impact on Relative Dose Intensity among Women with Breast Cancer in Ethiopia: A Prospective Observational Study
Diriba Alemayehu Gadisa,Mathewos Assefa,Gosaye Mekonen Tefera,Getnet Yimer
Journal of Oncology. 2020; 2020: 1
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18 The Italian cross-cultural adaptations of the paediatric International Knee Documentation Committee Score and the Hospital for Special Surgery Paediatric Functional Activity Brief Scale are reliable instruments in paediatric population
Luca Macchiarola,Alberto Grassi,Stefano Di Paolo,Nicola Pizza,Giovanni Trisolino,Stefano Stallone,Stefano Stilli,Stefano Zaffagnini
Knee Surgery, Sports Traumatology, Arthroscopy. 2020;
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19 Understanding Symptoms in RYR1-Related Myopathies: A Mixed-Methods Analysis Based on Participants’ Experience
Carlos Capella-Peris,Mary M. Cosgrove,Irene C. Chrismer,M. Sonia Razaqyar,Jeffrey S. Elliott,Anna Kuo,Magalie Emile-Backer,Katherine G. Meilleur
The Patient - Patient-Centered Outcomes Research. 2020;
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20 Health and quality of life among a cohort of patients having lateral internal sphincterotomy for anal fissures
J. M. Sutherland,A. Karimuddin,G. Liu,T. Crump,H. Akbar,T. Phang,K. Redfern,S. Manoharan,C. J. Brown,M. J. Raval
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21 Intermittently scanned continuous glucose monitoring is associated with high satisfaction but increased HbA1c and weight in well-controlled youth with type 1 diabetes
Sara Charleer,Pieter Gillard,Eva Vandoorne,Kelly Cammaerts,Chantal Mathieu,Kristina Casteels
Pediatric Diabetes. 2020;
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22 Health-Related Quality of Life
Beverley Kok,Reid Whitlock,Thomas Ferguson,Robert James Bailey,Kelly Warren Burak,Jan Kowalczewski,Navdeep Tangri,Puneeta Tandon
The American Journal of Gastroenterology. 2020; 115(4): 575
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23 Performance of Pediatric PROMIS CATs in Children With Upper Extremity Fractures
William D. Gerull,Ugochi C. Okoroafor,Jason Guattery,Charles A. Goldfarb,Lindley B. Wall,Ryan P. Calfee
HAND. 2020; 15(2): 194
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24 Patient-reported cognitive complaints in older adults with gastrointestinal malignancies at diagnosis– Results from the Cancer & Aging Resilience Evaluation (CARE) study
Nabiel Mir,Paul MacLennan,Mustafa Al-Obaidi,Donna Murdaugh,Kelly M. Kenzik,Andrew McDonald,Noha Sharafeldin,Crystal Young-Smith,Ravi Paluri,Olumide Gbolahan,Lakshmin Nandagopal,Smita Bhatia,Grant R. Williams
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25 ‘Mapping’ Health State Utility Values from Non-preference-Based Measures: A Systematic Literature Review in Rare Diseases
Michela Meregaglia,Amanda Whittal,Elena Nicod,Michael Drummond
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26 Patient-reported outcome measures in studies of myelodysplastic syndromes and acute myeloid leukemia: Literature review and landscape analysis
Reinhard Stauder,Jérémy Lambert,Sandra Desruol-Allardin,Isabelle Savre,Lona Gaugler,Igor Stojkov,Uwe Siebert,Hélène Chevrou-Séverac
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27

Clinically Meaningful Difference for the Infant Gastroesophageal Questionnaire Revised version (I-GERQ-R): A Quantitative Synthesis
Adam B Smith,Neil Fawkes,Helen Kotze,Victoria Hodgkinson,Cathal Coyle
Patient Related Outcome Measures. 2020; Volume 11: 87
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28 Psychosocial Aspects of Delivering Cancer Care to Indigenous People: An Overview
Gail Garvey,Joan Cunningham,Carole Mayer,Angeline Letendre,Joanne Shaw,Kate Anderson,Brian Kelly
JCO Global Oncology. 2020; (6): 148
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29 Tobacco smoking and health-related quality of life among university students: Mediating effect of depression
Marija Milic,Tatjana Gazibara,Tatjana Pekmezovic,Darija Kisic Tepavcevic,Gorica Maric,Aleksandra Popovic,Jasmina Stevanovic,Karamchand Hukumchand Patil,Hagai Levine,Stanton A. Glantz
PLOS ONE. 2020; 15(1): e0227042
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30 Prospects for Diminishing the Impact of Nonamyloid Small-Vessel Diseases of the Brain
Anne Joutel
Annual Review of Pharmacology and Toxicology. 2020; 60(1): 437
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31 Information Technology–Assisted Screening for Gonorrhea and Chlamydia in a Pediatric Emergency Department
Jennifer L. Reed,Judith W. Dexheimer,Andrea M. Kachelmeyer,Maurizio Macaluso,Evaline A. Alessandrini,Jessica A. Kahn
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32 Adapting cognitive diagnosis computerized adaptive testing item selection rules to traditional item response theory
Miguel A. Sorrel,Juan R. Barrada,Jimmy de la Torre,Francisco José Abad,Timo Gnambs
PLOS ONE. 2020; 15(1): e0227196
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33 Implementing Patient-Reported Outcome Measures in Outpatient Rehabilitation Settings: A Systematic Review of Facilitators and Barriers Using the Consolidated Framework for Implementation Research
Matthew S. Briggs,Katherine Kozak Rethman,Justin Crookes,Fern Cheek,Kristy Pottkotter,Shana McGrath,John DeWitt,Lindsay E. Harmon-Matthews,Catherine C. Quatman-Yates
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34 Individualized OnabotulinumtoxinA Treatment for Upper Limb Spasticity Resulted in High Clinician- and Patient-Reported Satisfaction: Long-Term Observational Results from the ASPIRE Study
Gerard E. Francisco,Wolfgang H. Jost,Ganesh Bavikatte,Daniel S. Bandari,Simon F.T. Tang,Michael C. Munin,Joan Largent,Aubrey M. Adams,Aleksej Zuzek,Alberto Esquenazi
PM&R. 2020;
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35 Do Knee Osteoarthritis Patterns Affect Patient-Reported Outcomes in Total Knee Arthroplasty? Results from an International Multicenter Prospective Study with 3-Year Follow-Up
Veronique Vestergaard,Yhan E. Colon Iban,Andreas Kappel,Christopher M. Melnic,Hany Bedair,James I. Huddleston,Charles R. Bragdon,Henrik Malchau,Anders Troelsen
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36 Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure
Ahmad Shahabeddin Parizi,Paul F.M. Krabbe,Erik Buskens,Wim van der Bij,Hans Blokzijl,Vera Hanewinkel,Coby Annema,Stephan J.L. Bakker,Karin M. Vermeulen
Journal of Clinical Epidemiology. 2020; 126: 93
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37 Stakeholders’ perspectives on a patient-reported outcome measure-based drug safety monitoring system for immune-mediated inflammatory diseases
Leanne J. Kosse,Naomi T. Jessurun,Harald E. Vonkeman,Sander W. Tas,Mike T. Nurmohamed,Frank Hoentjen,Martijn B.A. van Doorn,Eugène P. van Puijenbroek,Bart J.F. van den Bemt,Marieke de Vries
Expert Opinion on Drug Safety. 2020; : 1
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38 A randomized controlled trial on irrigation of open appendectomy wound with gentamicin- saline solution versus saline solution for prevention of surgical site infection
Sameh Hany Emile,Ahmed Hossam Elfallal,Mohamed Anwar Abdel-Razik,Mohamed El-Said,Ayman Elshobaky
International Journal of Surgery. 2020; 81: 140
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39 ‘I’m over the moon!’: patient-perceived outcomes of hepatitis C treatment
Davoud Pourmarzi,Andrew Smirnov,Lisa Hall,Gerard FitzGerald,Tony Rahman
Australian Journal of Primary Health. 2020; 26(4): 319
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40 Outcomes for Pressure Ulcer Trials (OUTPUTs) project: review and classification of outcomes reported in pressure ulcer prevention research
A. Lechner,J. Kottner,S. Coleman,D. Muir,D. Beeckman,W. Chaboyer,J. Cuddigan,Z. Moore,C. Rutherford,J. Schmitt,J. Nixon,K. Balzer
British Journal of Dermatology. 2020;
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41 Outcome Reporting Patterns in Total Hip Arthroplasty
Sravya P. Vajapey,Jesse Morris,Dan Li,Nicholas G. Greco,Mengnai Li,Andrew I. Spitzer
JBJS Reviews. 2020; 8(4): e0197
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42 Predicting self-reported functional improvement one year after primary total knee arthroplasty using pre- and postoperative patient-reported outcome measures
Lieke C.M. Vissers,Ruud P. van Hove,Babette C. van der Zwaard
The Knee. 2020; 27(3): 683
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43 Patient-Reported Outcomes in an Observational Cohort of HIV-1-Infected Adults on Darunavir/Cobicistat-Based Regimens: Beyond Viral Suppression
Andrea Antinori,Maria V. Cossu,Barbara Menzaghi,Gaetana Sterrantino,Nicola Squillace,Valentina Di Cristo,Annamaria Cattelan,Emanuele Focà,Antonella Castagna,Giancarlo Orofino,Daniela Valenti,Gabriella D’Ettore,Lucia Aprea,Sergio Ferrara,Maria E. Locatelli,Giordano Madeddu,Emanuele Pontali,Paolo Scerbo,Barbara Rossetti,Alessia Uglietti,Roberta Termini,Francesco Rucci,Andrea Gori,Daniela Mancusi
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44 A Global Review on the Utility of Genetic Testing for Familial Hypercholesterolemia
Rachele M. Hendricks-Sturrup,Jodi Clark-LoCascio,Christine Y. Lu
Journal of Personalized Medicine. 2020; 10(2): 23
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45 Patient Participation With a Mobile Phone Application for Objective Activity Assessment Before and After Spinal Fusion
Annelise C Sprau,Gregory Basil,Peter Borowksy,Jang W Yoon,Michael Y Wang
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46 Building and Deploying a COVID-19 Monitoring Solution in March
Gerbrand van de Beek,Ronald Liem,Henk Jan van der Horst,Michiel van Genuchten
IEEE Software. 2020; 37(5): 113
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47 A Comparative Analysis of Surgical Scar Cosmesis Based on Operative Approach for Radical Prostatectomy
Mitchell M. Huang,Zeyad R. Schwen,Michael J. Biles,Ridwan Alam,Andrew T. Gabrielson,Hiten D. Patel,Jeff Day,Phillip M. Pierorazio,Christian P. Pavlovich
Journal of Endourology. 2020;
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48 A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care
Hanh Nguyen,Phyllis Butow,Haryana Dhillon,Puma Sundaresan
Journal of Medical Radiation Sciences. 2020;
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49 Burden of migraine among Japanese patients: a cross-sectional National Health and Wellness Survey
Shoji Kikui,Yirong Chen,Hiroshi Todaka,Keiko Asao,Kenji Adachi,Takao Takeshima
The Journal of Headache and Pain. 2020; 21(1)
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50 Valuable, but not useful: Barriers to use in implementation of patient reported outcomes
Zoe Pruitt,Laura C. Schubel,Ram Dixit,Robin Littlejohn,Chun-Ju Hsiao,Deliya Wesley
Proceedings of the International Symposium on Human Factors and Ergonomics in Health Care. 2020; 9(1): 277
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51 A Practical Guide for Item Generation in Measure Development: Insights From the Development of a Patient-Reported Experience Measure of Compassion
Shane Sinclair,Priya Jaggi,Thomas F. Hack,Susan E. McClement,Lena Cuthbertson
Journal of Nursing Measurement. 2020; 28(1): 138
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52 Timing of electronic reminders did not improve trial participant questionnaire response: a randomized trial and meta-analyses
Prasanna Partha Sarathy,Lucksy Kottam,Adwoa Parker,Stephen Brealey,Elizabeth Coleman,Ada Keding,Alex Mitchell,Matthew Northgraves,David Torgerson,Amar Rangan
Journal of Clinical Epidemiology. 2020; 122: 70
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53 Patient-reported outcome measures for retinoblastoma: a scoping review
Ana Janic,Sylvie Bowden,Sarah Levy,Jennifer Stinson,Helen Dimaras
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54 Outcome reporting patterns in total knee arthroplasty: A systematic review
Sravya Vajapey,Jesse Morris,Andrew Spitzer,Andrew Glassman,Nicholas Greco,Mengnai Li
Journal of Clinical Orthopaedics and Trauma. 2020;
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55 Acceptance and Commitment Therapy Delivered via a Mobile Phone Messaging Robot Decreases Postoperative Opioid Utilization in Orthopaedic Trauma Patients: Randomized Control Trial (Preprint)
Chris A. Anthony,Edward Octavio Rojas,Valerie Keffala,Natalie Ann Glass,Apurva S. Shah,Benjamin J. Miller,Matthew Hogue,Michael C. Willey,Matthew Karam,John Lawrence Marsh
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56 A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review
Felipe J.S. Jones,Farrah L. Ezzeddine,Susan T. Herman,Jeffrey Buchhalter,Brandy Fureman,Lidia M.V.R. Moura
Epilepsy & Behavior. 2020; 102: 106704
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57 Using patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) in routine head and neck cancer care: What do health professionals perceive as barriers and facilitators?
Hanh Nguyen,Phyllis Butow,Haryana Dhillon,Lucinda Morris,Alison Brown,Katrina West,Puma Sundaresan
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58

Vagal Nerve Stimulation in Epilepsy: Experiences of Participants with Cognitive Deficits
Eva Pipan,Alexandros Apostolou,Maria Bograkou,Petra Brooks,Patrick Vigren,Helena Gauffin
Neuropsychiatric Disease and Treatment. 2020; Volume 16: 1181
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59 Instruments to Evaluate Self-Management of Radiation Dermatitis in Patients With Breast Cancer
Michelle Pembroke,Lynne Nemeth
Oncology Nursing Forum. 2020; 47(1): 101
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60 Carpal Tunnel Release without a Tourniquet
Oluwatobi R. Olaiya,Awwal M. Alagabi,Lawrence Mbuagbaw,Mark H. McRae
Plastic and Reconstructive Surgery. 2020; 145(3): 737
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61 Structural validity of the Finnish Manchester-Oxford Foot Questionnaire (MOXFQ) using the Rasch model
Ville T. Ponkilainen,Mikko Miettinen,Henrik Sandelin,Jan Lindahl,Arja H. Häkkinen,Alar Toom,Tomi Tillgren,Outi Ilves,Antti O. Latvala,Katri Ahonen,Timo Sirola,Mika Sampo,Olli Väistö,Jussi P. Repo
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62 Cross-cultural adaptation and psychometric properties of the Dutch version of the Hand Function Sort in patients with complaints of hand and/or wrist
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BMC Musculoskeletal Disorders. 2019; 20(1)
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63 Development of a patient reported outcome measures for measuring the impact of visual impairment following stroke
Lauren R. Hepworth,Fiona J. Rowe,Girvan Burnside
BMC Health Services Research. 2019; 19(1)
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64 Minimally Important Difference in the Foot and Ankle Outcome Score Among Patients Undergoing Hallux Valgus Surgery
Sameer Desai,Alexander C. Peterson,Kevin Wing,Alastair Younger,Trafford Crump,Guiping Liu,Andrea Veljkovic,Murray Penner,Jason M. Sutherland
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65 PROs in the wild: Assessing the validity of patient reported outcomes in an electronic registry
Federico Cabitza,Linda Greta Dui,Giuseppe Banfi
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66 Health Data Processes: A Framework for Analyzing and Discussing Efficient Use and Reuse of Health Data With a Focus on Patient-Reported Outcome Measures
Niels Henrik Ingvar Hjollund,José Maria Valderas,Derek Kyte,Melanie Jane Calvert
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67 Comparison between an electronic version of the foot and ankle outcome score and the standard paper version
Jae Yong Park,Bom Soo Kim,Hyun June Lee,Yu Mi Kim,Hyong Nyun Kim,Hwa Jun Kang,Jae Ho Cho,SeongJu Choi,Youngrak Choi
Medicine. 2019; 98(40): e17440
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68 The Relationship Between Patient Reported Dysphagia Symptom Severity and Swallowing Related Quality of Life in Patients with Neurological Disorders
Selen Serel Arslan,Numan Demir,A. Ayse Karaduman
Clinical and Experimental Health Sciences. 2019; 9(1): 54
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69 A Case Management System for Integrating Patient-reported Outcome Assessment in Clinical Practice
David Zahrieh,Alex Alexander,Briant Fruth,Angelina D. Tan,Jennifer Le-Rademacher,Rahma Warsame,Katrina Croghan,Jeff A. Sloan
Medical Care. 2019; 57: S73
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70 Psychometric Validation of the Autism Impact Measure (AIM)
Richard Houghton,Brigitta Monz,Kiely Law,Georg Loss,Stephanie Le Scouiller,Frank de Vries,Tom Willgoss
Journal of Autism and Developmental Disorders. 2019;
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71 Exercise for Solid Organ Transplant Candidates and Recipients
Tania Janaudis-Ferreira,Sunita Mathur,Robin Deliva,Nancy Howes,Catherine Patterson,Agnès Räkel,Stephanie So,Lisa Wickerson,Michel White,Yaron Avitzur,Olwyn Johnston,Norine Heywood,Sunita Singh,Sandra Holdsworth
Transplantation. 2019; 103(9): e220
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72 Patient-reported outcome measures for acute and chronic pain
Esther Pogatzki-Zahn,Kathrin Schnabel,Ulrike Kaiser
Current Opinion in Anaesthesiology. 2019; 32(5): 616
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73 Utilization of a Wide Array of Nonvalidated Outcome Scales in Pediatric Orthopaedic Publications
Walter H. Truong,Meghan J. Price,Kunal N. Agarwal,Joash R. Suryavanshi,Sahana Somasegar,Micha Thompson,Peter D. Fabricant,Emily R. Dodwell
Journal of Pediatric Orthopaedics. 2019; 39(2): e153
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74 Evaluation of Measurement Properties of Patient-Reported Outcome Measures After Rhinoplasty
Floris V. W. J. van Zijl,L. B. Mokkink,J. A. Haagsma,Frank R. Datema
JAMA Facial Plastic Surgery. 2019;
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75 The power of the group: comparison of interviews and group concept mapping for identifying patient-important outcomes of care
Kristin L. Rising,Marianna LaNoue,Alexzandra T. Gentsch,Amanda M. B. Doty,Amy Cunningham,Brendan G. Carr,Judd E. Hollander,Lori Latimer,Larry Loebell,Gail Weingarten,Neva White,Geoffrey Mills
BMC Medical Research Methodology. 2019; 19(1)
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76 Quality of life in patients with Parkinson´s disease in the Slovak Republic
Vladimír Meluš,Nikoleta Poliaková,Ján Bielik,Simona Lipovská
Neurologie pro praxi. 2019; 20(3): 219
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77 Electronic Patient-Reported Outcome Collection Systems in Orthopaedic Clinical Practice
Vincent A. Lizzio,Mihir S. Dekhne,Eric C. Makhni
JBJS Reviews. 2019; 7(7): e2
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78 Patient-Reported Satisfaction and Study Drug Discontinuation: Post-Hoc Analysis of Findings from ROCKET AF
Leo Ungar,Fatima Rodriguez,Anne S. Hellkamp,Richard C. Becker,Scott D. Berkowitz,Guenter Breithardt,Keith A. A. Fox,Werner Hacke,Jonathan L. Halperin,Graeme J. Hankey,Christopher C. Nessel,Daniel E. Singer,Manesh R. Patel,Jonathan P. Piccini,Kenneth W. Mahaffey
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79 An introduction to patient-reported outcome measures (PROMs) in trauma
Grace M. Turner,Anita Slade,Ameeta Retzer,Christel McMullan,Derek Kyte,Antonio Belli,Melanie Calvert
Journal of Trauma and Acute Care Surgery. 2019; 86(2): 314
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80 Parent and child perception of quality of life in a randomized controlled peanut oral immunotherapy trial
Tonje Reier-Nilsen,Karin C. Lødrup Carlsen,Merethe Melbye Michelsen,Sebastian Drottning,Kai-Håkon Carlsen,Chi Zhang,Magnus P. Borres,Geir Håland
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81 Single-item discrimination of quality-of-life-altering dysphagia among 714 long-term oropharyngeal cancer survivors: Comparison of patient-reported outcome measures of swallowing
Stephen Grant,Mona Kamal,Abdallah S. R. Mohamed,Jhankruti Zaveri,Martha P. Barrow,G. Brandon Gunn,Stephen Y. Lai,Jan S. Lewin,David I. Rosenthal,Xin Shelley Wang,Clifton D. Fuller,Katherine A. Hutcheson
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82 Patient-Reported Outcome Measures for Adults With Kidney Disease: Current Measures, Ongoing Initiatives, and Future Opportunities for Incorporation Into Patient-Centered Kidney Care
Devika Nair,F. Perry Wilson
American Journal of Kidney Diseases. 2019;
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83 Correlation of Single Assessment Numerical Evaluation Score for Sport and Activities of Daily Living to Modified Harris Hip Score and Hip Outcome Score in Patients Undergoing Arthroscopic Hip Surgery
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The American Journal of Sports Medicine. 2019; 47(11): 2646
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84 Recommendations for selection of self-report pain intensity measures in children and adolescents
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PAIN. 2019; 160(1): 5
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85 Future Approaches to Precision Oncology–Based Clinical Trials
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86 A systematic review of patient-reported outcome measures used in shoulder instability research
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87 Is a Single Preliminary Session of In-office Bleaching Beneficial for the Effectiveness of At-home Tooth Bleaching? A Randomized Controlled Clinical Trial
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88 Quality of life outcomes in multiple myeloma patients: a summary of recent clinical trials
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89 Structured literature review of patient-reported outcome (PRO) instruments in adult tonsillectomy or tonsillotomy
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90 Single Assessment Numeric Evaluation (SANE) is a reliable metric to measure clinically significant improvements following shoulder arthroplasty
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91 Why imaging data alone is not enough: AI-based integration of imaging, omics, and clinical data
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92 Systematic review of methodology used in clinical studies evaluating the benefits of proton beam therapy
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93 Reducing shoulder complaints in employees with high occupational shoulder exposures: study protocol for a cluster-randomised controlled study (The Shoulder-Café Study)
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94 Accelerating the Search for Interventions Aimed at Expanding the Health Span in Humans: The Role of Epidemiology
Anne B Newman,Stephen B Kritchevsky,Jack M Guralnik,Steven R Cummings,Marcel Salive,George A Kuchel,Jennifer Schrack,Martha Clare Morris,David Weir,Andrea Baccarelli,Joanne M Murabito,Yoav Ben-Shlomo,Mark A Espeland,James Kirkland,David Melzer,Luigi Ferrucci,David Le Couteur
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95 Appearance in acne: an often-overlooked concept
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96 The Patient Acceptable Symptom State for the Harris Hip Score Following Total Hip Arthroplasty Validated thresholds at 3 months, 1, 3, 5, and 7 years follow-up
Vincent Galea,Isabella Florissi,Pakdee Rojanasopondist,James W. Connelly,Lina Holm Ingelsrud,Charles Bragdon,Henrik Malchau,Anders Troelsen
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97 The validity, reliability and minimal clinically important difference of the patient specific functional scale in snake envenomation
Charles J. Gerardo,Joao R. N. Vissoci,Leonardo P. de Oliveira,Victoria E. Anderson,Eugenia Quackenbush,Brandon Lewis,S. Rutherfoord Rose,Spencer Greene,Eric A. Toschlog,Nathan P. Charlton,Michael E. Mullins,Richard Schwartz,David Denning,Kapil Sharma,Kurt Kleinschmidt,Sean P. Bush,Nicklaus P. Brandehoff,Eric J. Lavonas,Chung-Ying Lin
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98 High-intensity interval training in the therapy and aftercare of cancer patients: a systematic review with meta-analysis
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99 Validation of a Quality of Life Instrument in Spanish Patients With Rheumatic Diseases
Leticia Leon,Luis Rodriguez-Rodriguez,Maria Dolores Aguilar,Juan Ángel Jover,Cristina Vadillo,Marta Redondo,Lydia Abasolo
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100 Health-related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review
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101 Minimal Associations Between Clinical Data and Childrenæs Self-Reported Health-Related Quality of Life in Children With Chronic Conditions—A Cross-Sectional Study
Kathrin I. Fischer,Dana Barthel,Christiane Otto,Ulrike Ravens-Sieberer,Ute Thyen,Marcus Klein,Otto Walter,Matthias Rose,Sandra Nolte
Frontiers in Pediatrics. 2019; 7
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102 Outcomes Following Replantation/Revascularization in the Hand
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103 Chronic Condition Measurement Requires Engagement, Not Measurement Alone
Andrea M. Austin,Don Carmichael,Scott Berry,Wendolyn S. Gozansky,Eugene C. Nelson,Jonathan S. Skinner,Paul J. Barr
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104 Researching the Appropriateness of Care in the Complementary and Integrative Health Professions Part 3: Designing Instruments With Patient Input
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105 Using Patient-Reported Outcome Measurement Information System Computer Adaptive Testing Domains to Investigate the Impact of Obesity on Physical Function, Pain Interference, and Mental Health in Sports Medicine Patients
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106 Prevalence and Associated Factors of Abdominal Pain and Disability at 1-Year Follow-up After an Attack of Acute Pancreatitis
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107 Landscape of Participant-centric Initiatives (PCIs) for Medical Research in the US, the UK, and Japan: A Scoping Review (Preprint)
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108 A critical appraisal of vasomotor symptom assessment tools used in clinical trials evaluating hormone therapy compared to placebo
Marie K. Christakis,Donna M. Strobino,Wen Shen
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109 Characteristics of Future Models of Integrated Outpatient Care
Alan Leviton,Julia Oppenheimer,Madeline Chiujdea,Annalee Antonetty,Oluwafemi William Ojo,Stephanie Garcia,Sarah Weas,Eric Fleegler,Eugenia Chan,Tobias Loddenkemper
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110 Qualitative study of implementation of patient self-reported measures in a consultation-liaison psychiatry practice
Aaron Spaulding,Lisa Nordan,Lorrie Blanchfield,Gladys B. Asiedu,Jean Saltivan,Stacey Pecenka,Ryan Uitti,James Naessens,Shehzad Niazi
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111 Patients’ perspectives on acromegaly diagnostic delay: a qualitative study
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112 Patient perspectives on the process and outcomes of psychiatric genetic counseling: An “Empowering Encounter ”
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113 Patient-reported outcomes of the relative severity of side effects from cancer radiotherapy
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114 Patients With Nonalcoholic Steatohepatitis Experience Severe Impairment of Health-Related Quality of Life
Zobair M. Younossi,Maria Stepanova,Eric J. Lawitz,K. Rajender Reddy,Vincent Wai-Sun Wong,Alessandra Mangia,Andrew J. Muir,Ira Jacobson,C. Stephen Djedjos,Anuj Gaggar,Robert P. Myers,Issah Younossi,Fatema Nader,Andrei Racila
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115 Genetic counselors as social and behavioral scientists in the era of precision medicine
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116 The Effect of Pet Therapy and Artist Interactions on Quality of Life in Brain Tumor Patients: A Cross-Section of Art and Medicine in Dialog
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117 The efficacy of complementary therapy for patients receiving palliative cancer care
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118 Patient reported outcome measures in rare diseases: a narrative review
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119 Quality of Life Assessment in Multiple Sclerosis: Different Perception between Patients and Neurologists
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120 Measurement Properties of Patient-Reported Outcome Measures Used in Patients Undergoing Total Hip Arthroplasty
Joel J. Gagnier,Hsiaomin Huang,Megan Mullins,Danica Marinac-Dabic,Anna Ghambaryan,Benjamin Eloff,Faisal Mirza,Manuel Bayona
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121 Working and caring for a child with chronic illness: A review of current literature
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122 Physical Symptom Burden and its Association with Distress, Anxiety and Depression in Breast Cancer
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123 Patient-Reported Outcomes in Patients with Chronic Kidney Disease and Kidney Transplant—Part 1
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124 The relationship between patients’ illness beliefs and recovery after stroke
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125 Evaluating test-retest reliability in patient-reported outcome measures for older people: A systematic review
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126 Standardization of immunotherapy adverse events in patient information leaflets and development of an interface terminology for outpatients’ monitoring
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127 Validity, Reliability, and Responsiveness of the Spanish Version of the OPTIMAL Instrument
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128 Predictive factors of satisfaction and quality of life after immediate breast reconstruction using the BREAST-Q©
Carmen Cereijo-Garea,Salvador Pita-Fernández,Benigno Acea-Nebril,Raquel Rey-Villar,Alejandra García-Novoa,Cristina Varela-Lamas,Sergio Builes-Ramirez,Teresa Seoane-Pillado,Vanesa Balboa-Barreiro
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129 Characteristics and complexity of chronic pain patients referred to a community-based multi-disciplinary chronic pain clinic
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130 Aktueller Stand der Lebensqualitätsmessung bei Patienten mit chronischer Otitis media und Schallleitungsschwerhörigkeit
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131 Enhanced recovery after cardiac surgery: More than a buzzword
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132 Validation of the Patient-Reported Outcomes Measurement Information System (PROMIS)-57 and -29 item short forms among kidney transplant recipients
Evan Tang,Oladapo Ekundayo,John Devin Peipert,Nathaniel Edwards,Aarushi Bansal,Candice Richardson,Susan J. Bartlett,Doris Howell,Madeline Li,David Cella,Marta Novak,Istvan Mucsi
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133 Are Patient Self-Reported Outcome Measures Sensitive Enough to Be Used as End Points in Clinical Trials?
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134 Determinants of patient satisfaction in outpatient musculoskeletal physiotherapy: a systematic, qualitative meta-summary, and meta-synthesis
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135 The effects of multidisciplinary psychosocial interventions on adult cancer patients: a systematic review and meta-analysis
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136 AOFAS Position Statement Regarding Patient-Reported Outcome Measures
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137 Comparing patient-reported outcomes entered at home versus at hospital, and testing touch screens for initial recruitment to scientific trials in arthritis patients
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138 Patient-reported outcomes associated with different restorative techniques in pediatric dentistry: A systematic review and MTC meta-analysis
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139 A beta-binomial mixed-effects model approach for analysing longitudinal discrete and bounded outcomes
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140 Addressing the quality of life needs of older patients with cancer: a SIOG consensus paper and practical guide
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141 Factors Associated With Health-Related Quality of Life in Patients With Open Fractures
Sheila Sprague,Brad A. Petrisor,Kyle J. Jeray,Paula McKay,Taryn Scott,Diane Heels-Ansdell,Emil H. Schemitsch,Susan Liew,Gordon H. Guyatt,Stephen D. Walter,Mohit Bhandari
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142 Prospective multicentre cohort study of patient-reported outcomes and complications following major abdominal neoplastic surgery (PATRONUS) – study protocol for a CHIR-Net student-initiated German medical audit study (CHIR-Net SIGMA study)
Christoph A. Fink,Mirco Friedrich,Pia-Elena Frey,Lukas Rädeker,Alexander Leuck,Thomas Bruckner,Manuel Feisst,Solveig Tenckhoff,Christina Klose,Colette Dörr-Harim,Jens Neudecker,André L. Mihaljevic
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143 Uterosacral vault suspension (USLS) at the time of hysterectomy: laparoscopic versus vaginal approach
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144 Translation and cultural adaptation of the Pediatric Eosinophilic Esophagitis Symptom Score (PEESS v2.0)
Maria Fernanda Oliveira Santos,Cristina Palmer Barros,Carlos Henrique Martins da Silva,Helena Borges Martins da Silva Paro
Jornal de Pediatria (Versão em Português). 2018; 94(6): 642
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145 Patient-reported health-related quality of life outcomes in supportive-care interventions for adults with brain tumors: A systematic review
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146 A Review of Validated Quality-of-Life Patient-Reported Outcome Measures in Pediatric Plastic Surgery
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147 Psychometric evaluation of the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function and Pain Interference Computer Adaptive Test for subacromial impingement syndrome
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148 Measurement Properties of the Functional Rating Index
Zhongfei Bai,Tian Shu,Jiani Lu,Wenxin Niu
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149 HLA-DQ:gluten tetramer test in blood gives better detection of coeliac patients than biopsy after 14-day gluten challenge
Vikas K Sarna,Gry I Skodje,Henrik M Reims,Louise F Risnes,Shiva Dahal-Koirala,Ludvig M Sollid,Knut E A Lundin
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150 Valuing health-related quality of life: systematic variation in health perception
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151 A preliminary investigation examining patient reported outcome measures for low back pain and utilisation amongst chiropractors in Australia: facilitators and barriers to clinical implementation
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152 A Pilot Observational Study of Hypoglycemia: Patient Reporting Using a Web-Based Portal Compared to Paper Surveys
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153 Cost and cost-effectiveness studies in urologic oncology using large administrative databases
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154 Severity classification of the quality of recovery-15 score—An observational study.
Jakob Kleif,Ismail Gögenur
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155 Implementing electronic patient-reported outcomes measurements: challenges and success factors
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BMJ Quality & Safety. 2018; 27(10): 852
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156 Rasch analysis of the Lower Extremity Functional Scale for foot and ankle patients
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Disability and Rehabilitation. 2018; : 1
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157 Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review
Fatima Isa,Grace M. Turner,Geetinder Kaur,Derek Kyte,Anita Slade,Tanya Pankhurst,Larissa Kerecuk,Thomas Keeley,James Ferguson,Melanie Calvert
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158 Cognitive functioning and quality of life in patients with Hashimoto thyroiditis on long-term levothyroxine replacement
Marina Djurovic,Alberto M. Pereira,Johannes W. A. Smit,Olga Vasovic,Svetozar Damjanovic,Zvezdana Jemuovic,Dragan Pavlovic,Dragana Miljic,Sandra Pekic,Marko Stojanovic,Milika Asanin,Gordana Krljanac,Milan Petakov
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159 Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis
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160 French Patients with Hepatitis C Treated with Direct-Acting Antiviral Combinations: The Effect on Patient-Reported Outcomes
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161 Patient-reported improvements of pain, disability and health-related quality of life following chiropractic care for back pain – A national observational study in Sweden
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162 Wound irrigation does not affect health-related quality of life after open fractures: results of a randomized controlled trial
S. Sprague,B. Petrisor,K. Jeray,P. McKay,D. Heels-Ansdell,E. Schemitsch,S. Liew,G. Guyatt,S. D. Walter,M. Bhandari
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163 Quality of Life and Disability in Patients Candidate for Lumbar Spinal Fusion Surgery
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164 Health-related quality of life, psychological distress, and symptom burden in an Asian population of outpatients with atrial fibrillation
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165 Correlation of Patient-Reported Outcome Measurement Information System Physical Function Upper Extremity Computer Adaptive Testing, With the American Shoulder and Elbow Surgeons Shoulder Assessment Form and Simple Shoulder Test in Patients With Shoulder Pain
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166 Functional Status Examination in Patients with Moderate to Severe Traumatic Brain Injuries
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167 An observational study to assess the outcomes of treatment of patients with stable angina after planned percutaneous coronary intervention: baseline patient characteristics
L. G. Ratova,E. N. Parizhskaya,K. A. Kovaleva,A. O. Nedoshivin,O. D. Nemyatykh,V. V. Pulit,A. O. Konradi
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168 Variability of PROMIS Scores Across Hand Conditions
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169 ‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting
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170 Assessment of patient-reported outcomes after polytrauma: protocol for a systematic review
Irmela Gnass,Michaela Ritschel,Silke Andrich,Silke Kuske,Kai Moschinski,Annegret Herrmann-Frank,Maria-Inti Metzendorf,Sascha Flohé,Johannes Sturm,Joachim Windolf,Andrea Icks
BMJ Open. 2018; 8(3): e017571
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171 Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire
Chatree Chai-Adisaksopha,Mark W Skinner,Randall Curtis,Neil Frick,Michael B Nichol,Declan Noone,Brian O’Mahony,David Page,Jeffrey Stonebraker,Lehana Thabane,Mark Crowther,Alfonso Iorio
BMJ Open. 2018; 8(8): e021900
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172 Healthcare in the pocket: A qualitative analysis of patients? perspectives of an mHealth application to foster power in everyday living with schizophrenia (Preprint)
Malene Terp,Rikke Jørgensen,Birgitte Schantz Laursen,Jan Mainz,Charlotte D. Bjørnes
JMIR Mental Health. 2018;
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173 Radiological grading of osteoarthritis on Rosenberg view has a significant correlation with clinical outcomes after medial open-wedge high-tibial osteotomy
Kyung Wook Nha,Seung Min Oh,Yoon Won Ha,Manoj Kumar Patel,Ji Hyun Seo,Byung Hoon Lee
Knee Surgery, Sports Traumatology, Arthroscopy. 2018;
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174 Approaches to rapid acting insulin intensification in patients with type 2 diabetes mellitus not achieving glycemic targets
Alexandra Migdal,Martin Abrahamson,Anne Peters,Nan Vint
Annals of Medicine. 2018; : 1
[Pubmed] | [DOI]
175 Caring electronically for young outpatients who have epilepsy
Julia Oppenheimer,Alan Leviton,Madeline Chiujdea,Annalee Antonetty,Oluwafemi William Ojo,Stephanie Garcia,Sarah Weas,Eric W. Fleegler,Eugenia Chan,Tobias Loddenkemper
Epilepsy & Behavior. 2018;
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176 Primary dysmenorrhea with and without premenstrual syndrome: variation in quality of life over menstrual phases
Farideh Quick,Sakineh Mohammad-Alizadeh-Charandabi,Mojgan Mirghafourvand
Quality of Life Research. 2018;
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177 Quality of life on long-term parenteral nutrition
Yaron Avitzur,Mar Miserachs
Current Opinion in Organ Transplantation. 2018; : 1
[Pubmed] | [DOI]
178 A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy
Christine Mpundu-Kaambwa,Gang Chen,Elisabeth Huynh,Remo Russo,Julie Ratcliffe
Quality of Life Research. 2018;
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179 Un réseau de pairs pour l’éducation thérapeutique des patients atteints de diabète de type 2 au Mali
Stéphane Besançon,Cynthia Fleury
Soins. 2018; 63(828): 55
[Pubmed] | [DOI]
180 Perspectives of Patients with Insulin-Treated Type 1 and Type 2 Diabetes on Hypoglycemia: Results of the HAT Observational Study in Central and Eastern European Countries
Martin Haluzik,Adam Kretowski,Krzysztof Strojek,Leszek Czupryniak,Andrej Janez,Peter Kempler,Michal Andel,Tsvetalina Tankova,Mihail Boyanov,Lea Smircic Duvnjak,Laszlo Madacsy,Iwona Tarnowska,Marcin Zychma,Nebojsa Lalic
Diabetes Therapy. 2018;
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181 Functional Impact of Congenital Hand Differences: Early Results From the Congenital Upper Limb Differences (CoULD) Registry
Donald S. Bae,Maria F. Canizares,Patricia E. Miller,Peter M. Waters,Charles A. Goldfarb
The Journal of Hand Surgery. 2018; 43(4): 321
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182 Factors associated with health-related quality of life, hip function, and health utility after operative management of femoral neck fractures
S. Sprague,M. Bhandari,M. J. Heetveld,S. Liew,T. Scott,S. Bzovsky,D. Heels-Ansdell,Q. Zhou,M. Swiontkowski,E. H. Schemitsch
The Bone & Joint Journal. 2018; 100-B(3): 361
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183 Key design and analysis principles for quality of life and patient-reported outcomes in clinical trials
Joseph M. Unger,Riha Vaidya,John L. Gore
Urologic Oncology: Seminars and Original Investigations. 2018;
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184 Chronic Anterior Uveitis in Children: Psychosocial Challenges for Patients and Their Families
Delana M. Parker,Sheila T. Angeles-Han,Annette L. Stanton,Gary N. Holland
American Journal of Ophthalmology. 2018;
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185 Control of Allergic Rhinitis and Asthma Test for Children (CARATKids)
Rita Amaral,Ana C. Carneiro,Gustavo Wandalsen,João A. Fonseca,Dirceu Sole
Annals of Allergy, Asthma & Immunology. 2017; 118(5): 551
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186 Are community-based nurse-led self-management support interventions effective in chronic patients? Results of a systematic review and meta-analysis
Azzurra Massimi,Corrado De Vito,Ilaria Brufola,Alice Corsaro,Carolina Marzuillo,Giuseppe Migliara,Maria Luisa Rega,Walter Ricciardi,Paolo Villari,Gianfranco Damiani,Sari Helena Räisänen
PLOS ONE. 2017; 12(3): e0173617
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187 The Methods for Foot Function Index and Foot and Ankle Outcome Score Measurement: A Comparison between Paper-and-Pencil Method and Electronic Method
Ji-Beom Kim,Min-Soo Kwon,Jung-Gon Kim,Young Yi,Woo-Chun Lee,Jeong-Ku Ha,Suk-Hwan Jang
Journal of Korean Foot and Ankle Society. 2017; 21(1): 33
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188 Development and psychometric evaluation of the self-assessment of psoriasis symptoms (SAPS) – clinical trial and the SAPS – real world patient-reported outcomes
April W. Armstrong,Benjamin Banderas,Catherine Foley,Jonathan Stokes,Murali Sundaram,Alan L. Shields
Journal of Dermatological Treatment. 2017; : 1
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189 Impact of rituximab on patient-reported outcomes in patients with rheumatoid arthritis from the US Corrona Registry
Leslie R. Harrold,Ani John,Jennie Best,Steve Zlotnick,Chitra Karki,YouFu Li,Jeffrey D. Greenberg,Joel M. Kremer
Clinical Rheumatology. 2017;
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190 Physical after-effects in men undergoing prostate biopsy in routine clinical practice: Results from the PiCTure study
Eileen Morgan,Frances J. Drummond,Catherine Coyle,Linda Sharp,Anna T. Gavin
Urologic Oncology: Seminars and Original Investigations. 2017;
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191 Patient-Reported Outcomes Can Be Used to Streamline Post-Total Hip Arthroplasty Follow-Up to High-Risk Patients
Jie J. Yao,Hilal Maradit Kremers,Cathy D. Schleck,Dirk R. Larson,Jasvinder A. Singh,Daniel J. Berry,David G. Lewallen
The Journal of Arthroplasty. 2017;
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192 Important clinical descriptors to include in the examination and assessment of patients with femoroacetabular impingement syndrome: an international and multi-disciplinary Delphi survey
M. P. Reiman,K. Thorborg,K. Covington,C. E. Cook,P. Hölmich
Knee Surgery, Sports Traumatology, Arthroscopy. 2017;
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193 Noninvasive positive pressure ventilation in the immediate post–bariatric surgery care of patients with obstructive sleep apnea: a systematic review
Solomon Tong,Jonathan Gower,Austin Morgan,Kyle Gadbois,Gordon Wisbach
Surgery for Obesity and Related Diseases. 2017;
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194 Impact of targeted therapies in metastatic renal cell carcinoma on patient-reported outcomes: Methodology of clinical trials and clinical benefit
M. Dos Santos,P.E. Brachet,C. Chevreau,F. Joly
Cancer Treatment Reviews. 2017; 53: 53
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195 Measuring quality of life in opioid-dependent people: a systematic review of assessment instruments
Lisa Strada,Wouter Vanderplasschen,Angela Buchholz,Bernd Schulte,Ashley E. Muller,Uwe Verthein,Jens Reimer
Quality of Life Research. 2017;
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196 Electronic-Based Patient-Reported Outcomes: Willingness, Needs, and Barriers in Adjuvant and Metastatic Breast Cancer Patients
Andreas D Hartkopf,Joachim Graf,Elisabeth Simoes,Lucia Keilmann,Nina Sickenberger,Paul Gass,Diethelm Wallwiener,Lina Matthies,Florin-Andrei Taran,Michael P Lux,Stephanie Wallwiener,Eric Belleville,Christof Sohn,Peter A Fasching,Andreas Schneeweiss,Sara Y Brucker,Markus Wallwiener
JMIR Cancer. 2017; 3(2): e11
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197 Qualitätsentwicklung in der interdisziplinären Trans-Gesundheitsversorgung
Timo O. Nieder,Andreas Köhler,Jana Eyssel,Peer Briken
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 2017;
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198 Quality of life patient-reported outcomes for locally advanced cutaneous melanoma
Evan S. Weitman,Matthew Perez,John F. Thompson,Robert H. I. Andtbacka,Jo Dalton,Mona L. Martin,Talia Miller,Chad Gwaltney,David Sarson,Eric Wachter,Jonathan S. Zager
Melanoma Research. 2017; : 1
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199 Patient reported outcomes – experiences with implementation in a University Health Care setting
Joshua Biber,Dominik Ose,Jenny Reese,Anna Gardiner,Julio Facelli,Joshua Spuhl,Darrel Brodke,Vivian S. Lee,Rachel Hess,Howard Weeks
Journal of Patient-Reported Outcomes. 2017; 2(1)
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200 Greater Efficacy with Secukinumab Treatment is Associated with Greater Psoriasis Symptom Relief: Results from Secukinumab Clinical Trial Data
Alice B. Gottlieb,Bruce Strober,Mark Lebwohl,Roland Kaufmann,David Pariser,Redzinaldas Narbutas,Judit Nyirady,Yang Zhao,Vivian Herrera,Lori McLeod,Dawn Odom,Boni E. Elewski
Journal of Psoriasis and Psoriatic Arthritis. 2017; 2(2): 73
[Pubmed] | [DOI]
201 Correlation of PROMIS Physical Function Upper Extremity Computer Adaptive Test with American Shoulder and Elbow Surgeons shoulder assessment form and Simple Shoulder Test in patients with shoulder arthritis
Chelsea E. Minoughan,Adam P. Schumaier,John L. Fritch,Brian M. Grawe
Journal of Shoulder and Elbow Surgery. 2017;
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202 Utility of a patient-reported outcome in measuring functional impairment during autologous stem cell transplant in patients with multiple myeloma
Nina Shah,Qiuling Shi,Sergio Giralt,Loretta Williams,Qaiser Bashir,Muzaffar Qazilbash,Richard E. Champlin,Charles S. Cleeland,Xin Shelley Wang
Quality of Life Research. 2017;
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203 Patient-reported outcome measures and qualitative research in dermatology: the quest for authenticity
C.J. Apfelbacher,P.A. Nelson
British Journal of Dermatology. 2017; 176(2): 285
[Pubmed] | [DOI]
204 Predictors of Health-Related Quality of Life in boys with Duchenne muscular dystrophy from six European countries
Christiane Otto,Birgit F. Steffensen,Ann-Lisbeth Højberg,Claus Barkmann,Jes Rahbek,Ulrike Ravens-Sieberer,Annette Mahoney,Julia Vry,Kathrin Gramsch,Rachel Thompson,Sunil Rodger,Kate Bushby,Hanns Lochmüller,Janbernd Kirschner
Journal of Neurology. 2017;
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205 Social correlates of health status, quality of life, and mood states in patients treated with cannabidiol for epilepsy
Magdalena Szaflarski,Barbara Hansen,E. Martina Bebin,Jerzy P. Szaflarski
Epilepsy & Behavior. 2017;
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206 Decreased health-related quality of life in angiodysplasia patients: A cross-sectional cohort
Karina V. Grooteman,Mijntje Matheeuwsen,Erwin J. M. van Geenen,Joost P. H. Drenth,John Green
PLOS ONE. 2017; 12(5): e0177522
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207 Health-Related Quality of Life in Primary Care: Which Aspects Matter in Multimorbid Patients with Type 2 Diabetes Mellitus in a Community Setting?
Martina Kamradt,Johannes Krisam,Marion Kiel,Markus Qreini,Werner Besier,Joachim Szecsenyi,Dominik Ose,Iratxe Puebla
PLOS ONE. 2017; 12(1): e0170883
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208 Feasibility and Psychometric Properties of the Adjusted DSWAL-QoL Questionnaire for Dysphagic Patients with Additional Language and/or Cognitive Impairment: Part I
Ingeborg S. Simpelaere,Jan Vanderwegen,Kristien Wouters,Marc De Bodt,Gwen Van Nuffelen
Dysphagia. 2017;
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209 A Systematic Review of Measurement Properties of Patient-Reported Outcome Measures Used in Patients Undergoing Total Knee Arthroplasty
Joel J. Gagnier,Megan Mullins,Hsiaomin Huang,Danica Marinac-Dabic,Anna Ghambaryan,Benjamin Eloff,Faisal Mirza,Manuel Bayona
The Journal of Arthroplasty. 2017;
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210 The prevalence and impact of chronic neuropathic pain on daily and social life: A nationwide study in a Japanese population
S. Inoue,T. Taguchi,T. Yamashita,M. Nakamura,T. Ushida
European Journal of Pain. 2017;
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211 Performance of PROMIS Instruments in Patients With Shoulder Instability
Chris A. Anthony,Natalie A. Glass,Kyle Hancock,Matt Bollier,Brian R. Wolf,Carolyn M. Hettrich
The American Journal of Sports Medicine. 2017; 45(2): 449
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212 The effects of exercise on pain, fatigue, insomnia, and health perceptions in patients with operable advanced stage rectal cancer prior to surgery: a pilot trial
Jennifer Brunet,Shaunna Burke,Michael P.W. Grocott,Malcolm A. West,Sandy Jack
BMC Cancer. 2017; 17(1)
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213 Association Between the Single Assessment Numeric Evaluation and the Western Ontario and McMaster Universities Osteoarthritis Index
Brian Pietrosimone,Brittney A. Luc,Austin Duncan,Susan A. Saliba,Joseph M. Hart,Christopher D. Ingersoll
Journal of Athletic Training. 2017; 52(6): 526
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214 The emerging role of anamorelin hydrochloride in the management of patients with cancer anorexia-cachexia
David C Currow,Richard JE Skipworth
Future Oncology. 2017;
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215 The assessment of patient clinical outcome: A literature discussion
MouæathA Hourani,NidalM Turab,QusaiY Shambour
Annals of Tropical Medicine and Public Health. 2017; 10(2): 321
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216 Predicting Falls Among Patients With Multiple Sclerosis: Comparison of Patient-Reported Outcomes and Performance-Based Measures of Lower Extremity Functions
Shirin Tajali,Mohammad-Jafar Shaterzadeh-Yazdi,Hossein Negahban,Jaap H. van Dieën,Mohammad Mehravar,Nastaran Majdinasab,Amal Saki-Malehis,Razie Mofateh
Multiple Sclerosis and Related Disorders. 2017;
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217 Management of aromatase inhibitor induced musculoskeletal symptoms in postmenopausal early Breast cancer: A systematic review and meta-analysis
Kate Roberts,Kirsty Rickett,Ristan Greer,Natasha Woodward
Critical Reviews in Oncology/Hematology. 2017; 111: 66
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218 Chemotherapy completion in elderly women with ovarian, primary peritoneal or fallopian tube cancer – An NRG oncology/Gynecologic Oncology Group study
Vivian E. von Gruenigen,Helen Q. Huang,Jan H. Beumer,Heather A. Lankes,William Tew,Thomas Herzog,Arti Hurria,Robert S. Mannel,Tina Rizack,Lisa M. Landrum,Peter G. Rose,Ritu Salani,William H. Bradley,Thomas J. Rutherford,Robert V. Higgins,Angeles Alvarez Secord,Gini Fleming
Gynecologic Oncology. 2017;
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219 Translation and validation of the 15-item Myasthenia Gravis Quality of life scale in Dutch
Ellen Strijbos,Fania R. Gärtner,Jan J. Verschuuren
Muscle & Nerve. 2017;
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220 A prospective study to validate the Polish language version of the European Organisation for Research and Treatment of Cancer (EORTC) Colorectal Liver Metastases (QLQ-LMC21) module
Dominika Paradowska,Krzysztof Bereza,Beatrice Sanna,Ewa Kucharska,Iwona M. Tomaszewska,Zbigniew Dudkiewicz,Piotr Skotnicki,Andrew Bottomley,Krzysztof A. Tomaszewski
European Journal of Oncology Nursing. 2017;
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221 Improving Outcomes in Patients with CRC: The Role of Patient Reported Outcomes—An ESDO Report
Eric Van Cutsem,Aimery De Gramont,Geoffrey Henning,Philippe Rougier,Franck Bonnetain,Thomas Seufferlein
Cancers. 2017; 9(6): 59
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222 Evidence-based prevention and treatment of osteoporosis after spinal cord injury: a systematic review
Saeed Soleyman-Jahi,Ali Yousefian,Radin Maheronnaghsh,Farhad Shokraneh,Shayan Abdollah Zadegan,Akbar Soltani,Seyed Mostafa Hosseini,Alexander R. Vaccaro,Vafa Rahimi-Movaghar
European Spine Journal. 2017;
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223 Patient-Reported Outcomes of Chemotherapy Involving Non-Small Cell Lung Cancer: Evaluation by Questionnaires of Quality of Life Regarding Anti-Aging and Anti-Cancer Drugs
Takanori Ayabe,Masaki Tomita,Takashi Asada,Kazuyo Tsuchiya,Manabu Nemoto,Kunihide Nakamura
Advances in Lung Cancer. 2017; 06(02): 13
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224 Investigating Patient Reported Outcomes and Experience for Scarf Akin Osteotomy Using Proms2.0
Karam Ahmad
MOJ Orthopedics & Rheumatology. 2017; 8(2)
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225 Impact of Tocilizumab Monotherapy on Clinical and Patient-Reported Quality-of-Life Outcomes in Patients with Rheumatoid Arthritis
Leslie R. Harrold,Ani John,George W. Reed,Tmirah Haselkorn,Chitra Karki,YouFu Li,Jennie Best,Steve Zlotnick,Joel M. Kremer,Jeffrey D. Greenberg
Rheumatology and Therapy. 2017;
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226 Quality of Surgery in Malawi: Comparison of Patient-Reported Outcomes After Hernia Surgery Between District and Central Hospitals
Jakub Gajewski,Ronan Conroy,Leon Bijlmakers,Gerald Mwapasa,Tracey McCauley,Eric Borgstein,Ruairi Brugha
World Journal of Surgery. 2017;
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227 Integrative health care – What are the relevant health outcomes from a practice perspective? A survey
Ania Kania-Richmond,Amy Metcalfe
BMC Complementary and Alternative Medicine. 2017; 17(1)
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228 Are validated patient-reported outcomes used on children in pediatric otolaryngology? A systematic review
Kevin Wong,Jacquelyn Piraquive,Chelsea A. Troiano,Anita Sulibhavi,Kenneth M. Grundfast,Jessica R. Levi
International Journal of Pediatric Otorhinolaryngology. 2017;
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229 Impact of daclizumab versus interferon beta-1a on patient-reported outcomes in relapsing-remitting multiple sclerosis
Ying Liu,Timothy Vollmer,Eva Havrdova,Katherine Riester,Andrew Lee,Glenn Phillips,Ping Wang,Guido Sabatella
Multiple Sclerosis and Related Disorders. 2017; 11: 18
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230 Randomized Controlled Trials Evaluating Patient-Reported Outcomes after Cholecystectomy: A Systematic Review
Krislynn M. Mueck,Deepa V. Cherla,Amy Taylor,Tien C. Ko,Mike K. Liang,Lillian S. Kao
Journal of the American College of Surgeons. 2017;
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231 Mandibular complete denture versus single-implant overdenture: a systematic review of patient-reported outcomes
T. E. Nogueira,D. R. Dias,C. R. Leles
Journal of Oral Rehabilitation. 2017;
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232 Scoping review of response shift methods: current reporting practices and recommendations
Tolulope T. Sajobi,Ronak Brahmbatt,Lisa M. Lix,Bruno D. Zumbo,Richard Sawatzky
Quality of Life Research. 2017;
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233 Correlation between subjective and objective hearing tests after unilateral and bilateral cochlear implantation
Geerte G. J. Ramakers,Yvette E. Smulders,Alice van Zon,Gijsbert A. Van Zanten,Wilko Grolman,Inge Stegeman
BMC Ear, Nose and Throat Disorders. 2017; 17(1)
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234 Association Among Facial Paralysis, Depression, and Quality of Life in Facial Plastic Surgery Patients
Jason C. Nellis,Masaru Ishii,Patrick J. Byrne,Kofi D. O. Boahene,Jacob K. Dey,Lisa E. Ishii
JAMA Facial Plastic Surgery. 2017; 19(3): 190
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235 Linking Spending and Quality Indicators to Measure Value and Efficiency in Health Care
Andrew M. Ryan,Christopher P. Tompkins,Adam A. Markovitz,Helen R. Burstin
Medical Care Research and Review. 2017; 74(4): 452
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236 Electronic patient-reported outcomes: a revolutionary strategy in cancer care
Roland Eid,Fady GH Haddad,Hampig Raphael Kourie,Joseph Kattan
Future Oncology. 2017;
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237 Translation and cultural adaptation of the Pediatric Eosinophilic Esophagitis Symptom Score (PEESS v2.0)
Maria Fernanda Oliveira Santos,Cristina Palmer Barros,Carlos Henrique Martins da Silva,Helena Borges Martins da Silva Paro
Jornal de Pediatria. 2017;
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238 Systematic Literature Review and Meta-Analysis of Commercially Available Computerized Cognitive Training Among Older Adults
Amber M. Tetlow,Jerri D. Edwards
Journal of Cognitive Enhancement. 2017;
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239 Comparison of pediatric self reports and parent proxy reports utilizing PROMIS: Results from a chiropractic practice-based research network
Joel Alcantara,Jeanne Ohm,Junjoe Alcantara
Complementary Therapies in Clinical Practice. 2017;
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240 Persistent hypothyroid symptoms in a patient with a normal thyroid stimulating hormone level
Jacqueline Jonklaas
Current Opinion in Endocrinology & Diabetes and Obesity. 2017; 24(5): 356
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241 Cross-Cultural Adaptation and Validation of the SWAL-QoL Questionnaire in Greek
Voula C. Georgopoulos,Myrto Perdikogianni,Myrto Mouskenteri,Loukia Psychogiou,Maria Oikonomou,Georgia A. Malandraki
Dysphagia. 2017;
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242 Including the Patient Voice in Aesthetic Rhinoplasty Outcomes
Lisa E. Ishii
JAMA Facial Plastic Surgery. 2016; 18(1): 35
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243 Using Quality Improvement Principles to Enhance Long-Term Completion of Patient-Reported Outcomes after Ventral Hernia Repair
Nishant Ganesh Kumar,Adil A. Faqih,Michael P. Feng,Richard S. Miller,Richard A. Pierce,Kenneth W. Sharp,Michael D. Holzman,Benjamin K. Poulose
Journal of the American College of Surgeons. 2016;
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244 Measurement of Depression in Breast Cancer Patients by Using a Mobile Application : A Feasibility and Reliability Study
Yoojin Sim,Guiyun Sohn,Byung Ho Son,Sei Hyun Ahn,Jong Won Lee,Yong-Wook Shin
Journal of Korean Neuropsychiatric Association. 2016; 55(3): 234
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245 Readability and Comprehension of the Geriatric Depression Scale and PROMIS® Physical Function Items in Older African Americans and Latinos
Sylvia H. Paz,Loretta Jones,José L. Calderón,Ron D. Hays
The Patient - Patient-Centered Outcomes Research. 2016;
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246 Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation
Victoria A. Goodwin,Priyamvada Paudyal,Mark G. Perry,Nikki Day,Annie Hawton,Christian Gericke,Obioha C. Ukoumunne,Richard Byng
Journal of Evaluation in Clinical Practice. 2016; : n/a
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247 Cross-cultural adaptation and multi-centric validation of the Italian version of the Achilles tendon Total Rupture Score (ATRS)
Alberto Vascellari,Pietro Spennacchio,Alberto Combi,Alberto Grassi,Silvio Patella,Salvatore Bisicchia,Gian Luigi Canata,Stefano Zaffagnini
Knee Surgery, Sports Traumatology, Arthroscopy. 2016;
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248 Improvements in Patient Reported Sexual Function after Microsurgical Varicocelectomy
Bobby B. Najari,Leonard Introna,Darius A. Paduch
Urology. 2016;
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249 Patient-reported and proxy-reported outcome measures for the assessment of health-related quality of life among patients receiving enteral feeding
Ingeborg Simpelaere,Anne White,Geertruida E. Bekkering,Bart Geurden,Gwen Van Nuffelen,Marc De Bodt
JBI Database of Systematic Reviews and Implementation Reports. 2016; 14(7): 45
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250 Patient-reported long-term outcome after primary hypospadias repair
Ann Nozohoor Ekmark,Einar Arnbjörnsson,Henry Svensson,Emma Hansson
Journal of Plastic Surgery and Hand Surgery. 2016; : 1
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251 Efficacy of menopausal hormone therapy on sleep quality: systematic review and meta-analysis
Dahima Cintron,Melissa Lipford,Laura Larrea-Mantilla,Gabriela Spencer-Bonilla,Robin Lloyd,Michael R. Gionfriddo,Shalak Gunjal,Ann M. Farrell,Virginia M. Miller,Mohammad Hassan Murad
Endocrine. 2016;
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252 The changing landscape of papillary thyroid cancer: Epidemiology, management, and the implications for patients
Carrie C. Lubitz,Julie A. Sosa
Cancer. 2016;
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253 The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome
Kyle W. Murdock,Xin Shelley Wang,Qiuling Shi,Charles S. Cleeland,Christopher P. Fagundes,Suzanne D. Vernon
Quality of Life Research. 2016;
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254 Illness perception in patients with androgenetic alopecia and alopecia areata in China
Nan-Lan Yu,Huan Tan,Zhi-Qiang Song,Xi-Chuan Yang
Journal of Psychosomatic Research. 2016; 86: 1
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255 Predictors of Dysgeusia in Patients With Oropharyngeal Cancer Treated With Chemotherapy and Intensity Modulated Radiation Therapy
Eli Sapir,Yebin Tao,Felix Feng,Stuart Samuels,Issam El Naqa,Carol A. Murdoch-Kinch,Mary Feng,Matthew Schipper,Avraham Eisbruch
International Journal of Radiation Oncology*Biology*Physics. 2016;
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256 Prospective evaluation of pain, swelling, and disability from copperhead envenomation
Brett Roth,Kapil Sharma,Nancy Onisko,Tiffany Chen
Clinical Toxicology. 2016; : 1
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257 How to Evaluate Health-Related Quality of Life and Its Association with Medication Adherence in Pulmonary Tuberculosis – Designing a Prospective Observational Study in South Africa
Tanja Kastien-Hilka,Bernd Rosenkranz,Bryan Bennett,Edina Sinanovic,Matthias Schwenkglenks
Frontiers in Pharmacology. 2016; 7
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258 Recruiting 9126 Primary Care Patients by Telephone: Characteristics of Participants Reached on Landlines, Basic Cell Phones, and Smartphones
Mirsada Serdarevic,Tera L. Fazzino,Charles D. MacLean,Gail L. Rose,John E. Helzer
Population Health Management. 2016; 19(3): 212
[Pubmed] | [DOI]
259 Subjective outcome of 166 tension-free vaginal tape procedures performed by a single surgeon: the Braemar experience
Jose D. Roman
Australian and New Zealand Journal of Obstetrics and Gynaecology. 2016;
[Pubmed] | [DOI]
260 Reliability of the revised scoliosis research society22 and oswestry disability index (ODI) questionnaires in adult spinal deformity when administered by telephone
Steven L. Bokshan,Jakub Godzik,Jonathan Dalton,Jennifer Jaffe,Lawrence G. Lenke,Michael P. Kelly
The Spine Journal. 2016;
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261 Quantifying clinical change: discrepancies between patients’ and providers’ perspectives
Rachel P. Dreyer,Philip G. Jones,Shelby Kutty,John A. Spertus
Quality of Life Research. 2016;
[Pubmed] | [DOI]
262 Perception of parents and caregivers regarding the impact of malocclusion on adolescents’ quality of life: a cross-sectional study
Lucas Guimarães Abreu,Camilo Aquino Melgaço,Mauro Henrique Abreu,Elizabeth Maria Bastos Lages,Saul Martins Paiva
Dental Press Journal of Orthodontics. 2016; 21(6): 74
[Pubmed] | [DOI]
263 Patient perceptions of physician-documented quality care in epilepsy
Lidia M.V.R. Moura,Thiago S. Carneiro,Emily L. Thorn,Michael P. Seitz,John Hsu,Andrew J. Cole,Barbara G. Vickrey,Daniel B. Hoch
Epilepsy & Behavior. 2016; 62: 90
[Pubmed] | [DOI]
264 Engaging stakeholders into an electronic patient-reported outcome development study: On making an HIV-specific e-PRO patient-centered
Kim Engler,David Lessard,Isabelle Toupin,Andràs Lènàrt,Bertrand Lebouché
Health Policy and Technology. 2016;
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265 Prospective study of recovery from copperhead snake envenomation: an observational study
Eric J Lavonas,Charles J Gerardo
BMC Emergency Medicine. 2015; 15(1)
[Pubmed] | [DOI]
266 Mapping the EQ-5D-5L Utility Scores: A Pilot Study in Orthopaedic Patients
Man Hung,Christine Cheng,Shirley D. Hon,Jerry Bounsanga
Open Journal of Orthopedics. 2015; 05(04): 67
[Pubmed] | [DOI]
267 Development and validation of a patient-reported outcome measure for stroke patients
Yanhong Luo,Jie Yang,Yanbo Zhang
Health and Quality of Life Outcomes. 2015; 13(1)
[Pubmed] | [DOI]
268 Baclofen for alcohol dependence: Relationships between baclofen and alcohol dosing and the occurrence of major sedation
Benjamin Rolland,Julien Labreuche,Alain Duhamel,Sylvie Deheul,Sophie Gautier,Marine Auffret,Baptiste Pignon,Thomas Valin,Régis Bordet,Olivier Cottencin
European Neuropsychopharmacology. 2015; 25(10): 1631
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269 Health-related quality of life in morphoea
N.K. Klimas,A.D. Shedd,I.H. Bernstein,H. Jacobe
British Journal of Dermatology. 2015; 172(5): 1329
[Pubmed] | [DOI]
270 Interleukin-6 and Tumor Necrosis Factor-a Are Associated with Quality of Life–Related Symptoms in Pulmonary Arterial Hypertension
Lea Ann Matura,Corey E. Ventetuolo,Harold I. Palevsky,David J. Lederer,Evelyn M. Horn,Stephen C. Mathai,Diane Pinder,Christine Archer-Chicko,Emilia Bagiella,Kari E. Roberts,Russell P. Tracy,Paul M. Hassoun,Reda E. Girgis,Steven M. Kawut
Annals of the American Thoracic Society. 2015; 12(3): 370
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271 Patient-Reported Outcomes and Total Health Care Expenditure in Prediction of Patient Satisfaction: Results From a National Study
Man Hung,Weiping Zhang,Wei Chen,Jerry Bounsanga,Christine Cheng,Jeremy D Franklin,Anthony B Crum,Maren W Voss,Shirley D Hon
JMIR Public Health and Surveillance. 2015; 1(2): e13
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272 Patient-reported outcome measures for hip preservation surgery--a systematic review of the literature
N. Ramisetty,Y. Kwon,N. Mohtadi
Journal of Hip Preservation Surgery. 2015; 2(1): 15
[Pubmed] | [DOI]
273 Effects of inhaled ginger aromatherapy on chemotherapy-induced nausea and vomiting and health-related quality of life in women with breast cancer
Pei Lin Lua,Noor Salihah,Nik Mazlan
Complementary Therapies in Medicine. 2015; 23(3): 396
[Pubmed] | [DOI]
274 Patient reported outcome measures for visual impairment after stroke: a systematic review
Lauren R. Hepworth,Fiona J. Rowe,Robert Harper,Kathryn Jarvis,Tracey Shipman,Helen Rodgers
Health and Quality of Life Outcomes. 2015; 13(1)
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275 Development and validation of patient-reported outcomes scale for hypertension
Li Zhi,Liu Qiaojun,Zhang Yanbo
International Journal for Quality in Health Care. 2015; 27(5): 369
[Pubmed] | [DOI]
276 High correlation of the Oxford Knee Score with postoperative pain, but not with performance-based functioning
Ruud P. van Hove,Richard M. Brohet,Barend J. van Royen,Peter A. Nolte
Knee Surgery, Sports Traumatology, Arthroscopy. 2015;
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277 Comparative Outcomes of Minimally Invasive Surgery for Posterior Lumbar Fusion: A Systematic Review
Christina L. Goldstein,Kevin Macwan,Kala Sundararajan,Y. Raja Rampersaud
Clinical Orthopaedics and Related Research®. 2014;
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278 Time for a Paradigm Shift With Computerized Adaptive Testing of General Physical Function Outcomes Measurements
Man Hung,Jeremy D. Franklin,Shirley D. Hon,Christine Cheng,Jillian Conrad,Charles L. Saltzman
Foot & Ankle International. 2014; 35(1): 1
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279 Diagnosis, Bedside Manner and Comment Style are Predictive Factors in Online Ratings of Urologists
Sarah Ferrara,Wilma M. Hopman,Michael Leveridge
Urology Practice. 2014; 1(3): 117
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280 Safety and tolerability of slow-release oral morphine versus methadone in the treatment of opioid dependence
Robert Hämmig,Wilfried Köhler,Karin Bonorden-Kleij,Bernd Weber,Karin Lebentrau,Toni Berthel,Lucija Babic-Hohnjec,Christian Vollmert,Doris Höpner,Najibulah Gholami,Uwe Verthein,Christian Haasen,Jens Reimer,Christian Ruckes
Journal of Substance Abuse Treatment. 2014; 47(4): 275
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281 Psychometric Comparison of the PROMIS Physical Function CAT With the FAAM and FFI for Measuring Patient-Reported Outcomes
Man Hung,Judith F. Baumhauer,James W. Brodsky,Christine Cheng,Scott J. Ellis,Jeremy D. Franklin,Shirley D. Hon,Susan N. Ishikawa,L. Daniel Latt,Phinit Phisitkul,Charles L. Saltzman,Nelson F. SooHoo,Kenneth J. Hunt
Foot & Ankle International. 2014; 35(6): 592
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282 Feasibility of Using the Patient-Reported Outcomes Measurement Information System in Academic Health Centers: Case Series Design on Pain Reduction After Chiropractic Care
Jeanmarie R. Burke
Journal of Chiropractic Medicine. 2014; 13(3): 168
[Pubmed] | [DOI]
283 A Daily Process Analysis of Physical Activity, Sedentary Behavior, and Perceived Cognitive Abilities
Patrick T. Fitzsimmons,Jaclyn P. Maher,Shawna E. Doerksen,Steriani Elavsk,Amanda L. Rebar,David E. Conroy
Psychology of Sport and Exercise. 2014;
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284 Electronic Versus Paper-Based Assessment of Health-Related Quality of Life Specific to HIV Disease: Reliability Study of the PROQOL-HIV Questionnaire
Martin Duracinsky,Christophe Lalanne,Cécile Goujard,Susan Herrmann,Christian Cheung-Lung,Jean-Paul Brosseau,Yannick Schwartz,Olivier Chassany
Journal of Medical Internet Research. 2014; 16(4): e115
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285 Creating meaningful cut-scores for Neuro-QOL measures of fatigue, physical functioning, and sleep disturbance using standard setting with patients and providers
Karon F. Cook,David E. Victorson,David Cella,Benjamin D. Schalet,Deborah Miller
Quality of Life Research. 2014;
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286 Regulatory considerations for prospective patient care registries: lessons learned from the National Neurosurgery Quality and Outcomes Database*
Anthony L. Asher,Matthew J. McGirt,Steven D. Glassman,Rachel Groman,Dan K. Resnick,Melissa Mehrlich,Elizabeth Spivey,Paul McCormick
Neurosurgical Focus. 2013; 34(1): E5
[Pubmed] | [DOI]
287 Quality of life and living arrangements for people with intellectual disability
Marco Bertelli,Luis Salvador-Carulla,Stefano Lassi,Michele Zappella,Raymond Ceccotto,David Palterer,Johan de Groef,Laura Benni,Paolo Rossi Prodi
Advances in Mental Health and Intellectual Disabilities. 2013; 7(4): 220
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288 Power and Sample Size Determination for the Group Comparison of Patient-Reported Outcomes with Rasch Family Models
Myriam Blanchin,Jean-Benoit Hardouin,Francis Guillemin,Bruno Falissard,Véronique Sébille,Mauro Gasparini
PLoS ONE. 2013; 8(2): e57279
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  In this article
    Abstract
   Introduction
   Importance of PRO
    PRO and Other Ty...
    Difference Betwe...
   Important Concepts
    Ideal Properties...
    Significance of ...
    Types of PRO Ins...
    Development of P...
    Administration o...
   Response Scales
   Evaluation of PRO
   Electronic PRO
   Summary
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