ArticlePatient preference and adherence2016
Importance of hemodialysis-related outcomes: comparison of ratings by a self-help group, clinicians, and health technology assessment authors with those by a large reference group of patients.
Article in Patient preference and adherence, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 3 of them syntheses that pooled it.
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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.
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Who cites it
8 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Dialysis or kidney transplantation in older adults? A systematic review summarizing functional, psychological, and quality of life-related outcomes after start of kidney replacement therapy.International urology and nephrology · 2022Pooled it
- Use of Patient Preference Information in Benefit-Risk Assessment, Health Technology Assessment, and Pricing and Reimbursement Decisions: A Systematic Literature Review of Attempts and Initiatives.Frontiers in medicine · 2020Pooled it
- Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review.BMC medical informatics and decision making · 2019Pooled it
- Kidney transplantation or dialysis in older adults-an interview study on the decision-making process.Age and ageing · 2022Article
- What are the Relevant Outcomes of the Periodic Health Examination? A Comparison of Citizens' and Experts' Ratings.Patient preference and adherence · 2021Article
- Evaluation of dialysis centres: values and criteria of the stakeholders.BMC health services research · 2020Article
- Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections.Research involvement and engagement · 2019Article
- Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice.Frontiers in medicine · 2018Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe selection of important outcomes is a crucial decision for clinical research and health technology assessment (HTA), and there is ongoing debate about which stakeholders should be involved. Hemodialysis is a complex treatment for chronic kidney disease (CKD) and affects many outcomes. Apart from obvious outcomes, such as mortality, morbidity and health-related quality of life (HRQoL), others such as, concerning daily living or health care provision, may also be important. The aim of our study was to analyze to what extent the preferences for patient-relevant outcomes differed between various stakeholders. We compared preferences of stakeholders normally or occasionally involved in outcome prioritization (patients from a self-help group, clinicians and HTA authors) with those of a large reference group of patients. PARTICIPANTS AND
methodsThe reference group consisted of 4,518 CKD patients investigated previously. We additionally recruited CKD patients via a regional self-help group, nephrologists via an online search and HTA authors via an expert database or personal contacts. All groups assessed the relative importance of the 23 outcomes by means of a discrete visual analog scale. We used descriptive statistics to rank outcomes and compare the results between groups.
resultsWe received completed questionnaires from 49 self-help group patients, 19 nephrologists and 18 HTA authors. Only the following 3 outcomes were ranked within the top 7 outcomes by all 4 groups: safety, HRQoL and emotional state. The ratings by the self-help group were generally more concordant with the reference group ratings than those by nephrologists, while HTA authors showed the least concordance.
conclusionPreferences of CKD patients from a self-help group, nephrologists and HTA authors differ to a varying extent from those of a large reference group of patients with CKD. The preferences of all stakeholders should form the basis of a transparent approach so as to generate a valid list of important outcomes.
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