ArticlePloS one2017
Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes.
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 25 citations in OpenAlex.
- Expectations before periacetabular osteotomy and relation to post-operative outcomes and satisfaction.Journal of hip preservation surgery · 2026Article
- The FOCUS model: A guide to promote patient partnership in clinical trial designs.Journal of clinical and translational science · 2026Article
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Article
- SCI Model Systems Complicated Urinary Tract Infection (cUTI) Guidelines: International Consensus on cUTI Likelihood Based on Symptoms.Topics in spinal cord injury rehabilitation · 2025Article
- A Mixed Methods Approach as a Channel to Interpret Outcomes Research and Lived Experience Enquiry of Upper Extremity Elective Surgery for Tetraplegia.Journal of personalized medicine · 2023Article
- Urinary Symptoms Among People With Neurogenic Lower Urinary Tract Dysfunction (NLUTD) Vary by Bladder Management.Topics in spinal cord injury rehabilitation · 2023Article
- Independence of Urinary Symptoms and Urinary Dipstick Results in Voiders With Neurogenic Bladder.Topics in spinal cord injury rehabilitation · 2022Article
- Reliability of the Urinary Symptom Questionnaires for people with neurogenic bladder (USQNB) who void or use indwelling catheters.Spinal cord · 2021Article
- The association between urine neutrophil gelatinase-associated lipocalin and UTI in people with neurogenic lower urinary tract dysfunction.Spinal cord · 2021Article
- Validity of the Urinary Symptom Questionnaires for people with neurogenic bladder (USQNB) who void or use indwelling catheters.Spinal cord · 2021Article
- A Swiss Health Care Professionals' Perspective on the Meaning of Interprofessional Collaboration in Health Care of People with MS-A Focus Group Study.International journal of environmental research and public health · 2021Article
- Identifying patients' priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care.Journal of cancer survivorship : research and practice · 2020Article
- How to Include Patient-Reported Outcome Measures in Clinical Trials.Current osteoporosis reports · 2020Review
- Recommendations for evaluation of neurogenic bladder and bowel dysfunction after spinal cord injury and/or disease.The journal of spinal cord medicine · 2020Review
- Article
- Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor.Frontiers in neurology · 2017Article
- IntravesicalTherapeutic advances in urologyArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.