scholarly journals The role of response domain and scale label in the quantitative interpretation of patient-reported outcome measure response options

2021 ◽  
Author(s):  
Tessa Peasgood ◽  
Jen-Yu Chang ◽  
Robina Mir ◽  
Clara Mukuria ◽  
Philip A. Powell
Keyword(s):  
First Language ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Response Options ◽  
The Public ◽  
Online Panel ◽  
Patient Reported ◽  
Common Response ◽  
Chi Squared

Abstract Purpose Uncertainties exist in how respondents interpret response options in patient-reported outcome measures (PROMs), particularly across different domains and for different scale labels. The current study assessed how respondents quantitatively interpret common response options. Methods Members of the general public were recruited to this study via an online panel, stratified by age, gender, and having English as a first language. Participants completed background questions and were randomised to answer questions on one of three domains (i.e. loneliness (negatively phrased), happiness or activities (positively phrased)). Participants were asked to provide quantitative interpretations of response options (e.g. how many times per week is equal to “often”) and to order several common response options (e.g. occasionally, sometimes) on a 0–100 slider scale. Chi-squared tests and regression analyses were used to assess whether response options were interpreted consistently across domains and respondent characteristics. Results Data from 1377 participants were analysed. There was general consistency in quantifying the number of times over the last 7 days to which each response option referred. Response options were consistently assigned a lower value in the loneliness than happiness and activities domains. Individual differences, such as age and English as a second language, explained some significant variation in responses, but less than domain. Conclusion Members of the public quantify common response options in a similar way, but their quantification is not equivalent across domains or every type of respondent. Recommendations for the use of certain scale labels over others in PROM development are provided.

scholarly journals The Role of Patient-Reported Outcome Measures in Value-Based Payment Reform

2017 ◽  
Vol 20 (6) ◽  
pp. 834-836 ◽  
Author(s):  
Lee Squitieri ◽  
Kevin J. Bozic ◽  
Andrea L. Pusic
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Payment Reform ◽  
Patient Reported

scholarly journals Exploring the impact of Patient Reported Outcome Measures (PROMs) among orthopaedic surgeons in mainland China: systematic review and survey-based study on hip and knee instruments

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
James Reeves Mbori Ngwayi ◽  
Jie Tan ◽  
Ning Liang ◽  
Kenedy Uzoma Obie ◽  
Daniel Edward Porter
Keyword(s):  
Outcome Measures ◽  
Mainland China ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Response Options ◽  
Orthopaedic Surgeons ◽  
Clinical Registries ◽  
Online Social Media ◽  
Patient Reported ◽  
The Impact

Abstract Background Patient Reported Outcome Measures (PROMs) are widely used in Europe and North America in a variety of areas including research, clinical governance, clinical registries and insurance ascertainment. The aim of this study was to assess commonly used knee and hip PROMs among Chinese surgeons and to gain an insight into their impact on evaluation of clinical outcomes. Methods 1. A systematic literature search of databases Medline, EMBASE, CINAHL and CNKI was performed from the earliest records to 22/07/2020 for knee instruments and 22/08/2020 for hip instruments, to retrieve Chinese Mandarin cross culturally adapted and validated knee and hip PROMs. 2. An 11-item electronic questionnaire was then designed under four domain categories. The survey was distributed via a ubiquitous online social media platform to orthopaedic surgeons. Responses were collected and analyzed. Output from 1. was used to populate parts of the survey questionnaire. Results The systematic online search yielded a total of 41 evaluation instruments, (10 hip and 31 knee); all of which were incorporated as response options. 234 viable questionnaires were retrieved with the largest group representing attending surgeons. 59.0% were familiar with the concept of PROMs among which 78.4% reported to have used PROMs themselves. In order of frequency of use, PROMs were purposed for clinical assessment (55.6%), research (40.7%), health regulation policies (18.6%) and insurance service requirements (10.6%). Implementation was prompted by both departmental (43.4%) and institutional policy (34.5%). 89.4% of PROMs users reported difficulties in the use of PROMs, with major barriers including license fees, limited access, inadequate training and burden of fill-out time (all > 40%). Conclusion There is evidence of limited familiarity with knee and hip PROMs among orthopaedic surgeons. Barriers to their use are significant. Development of a Chinese language PROMs database would be helpful.

scholarly journals PRM64 The Role of the Instrument Developer in the Translation of Patient Reported Outcome Measures

2011 ◽  
Vol 14 (7) ◽  
pp. A432 ◽  
Author(s):  
D. Clayson ◽  
A. Verjee-Lorenz ◽  
F. Miller ◽  
R. Two
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals A novel patient-reported outcome instrument assessing the symptoms of paroxysmal nocturnal hemoglobinuria, the PNH-SQ

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
R. Paola Daly ◽  
Jessica J. Jalbert ◽  
Shannon Keith ◽  
Tara Symonds ◽  
Jamile Shammo
Keyword(s):  
Abdominal Pain ◽  
Conceptual Model ◽  
Paroxysmal Nocturnal Hemoglobinuria ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Response Options ◽  
Patient Interview ◽  
Outcome Instrument ◽  
Patient Reported ◽  
Bothersome Symptom

Abstract Background Patient-reported outcome measures (PROs) used to measure symptoms of patients with paroxysmal nocturnal hemoglobinuria (PNH) in trials do not measure PNH symptoms comprehensively and do not assess daily fluctuations in symptoms. Following a literature review and consultation with a PNH expert, we drafted the PNH Symptom Questionnaire (PNH-SQ) and a patient-centric conceptual model of PNH symptoms and impacts. We then interviewed 15 patients with PNH to assess comprehensiveness of symptom capture from the patient perspective and to cognitively debrief the PNH-SQ. Patient interview data were also used to finalize the PNH conceptual model. Results Participants mentioned 27 signs or symptoms of PNH spontaneously or after being probed; 93% reported experiencing ≥ 1 PNH symptom. Concept saturation was reached for all PNH symptoms. Further, interviews confirmed the instrument captured the most common PNH symptoms, including fatigue (87%), abdominal pain (60%), and difficulty swallowing (47%), with fatigue ranked as the most bothersome symptom. The interviews demonstrated that participants understood the items of the PNH-SQ (90–100%); considered the symptoms relevant (> 50– > 90%); the recall period appropriate (> 80–100%); and the response options suitable (> 80–100%). Participants also suggested changes regarding item redundancy and relevance; this feedback was used to finalize the instrument. Conclusions The finalized PNH-SQ assesses the presence and severity of 10 symptoms—abdominal pain, chest discomfort, difficulty sleeping, difficulty swallowing, difficulty thinking clearly, fatigue, headache, muscle weakness, pain in the legs or back, and shortness of breath—over 24 h. The PNH-SQ is a content-valid questionnaire suitable for assessing daily symptom presence and severity in PNH clinical trials.

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