ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2015
Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 4 of them syntheses that pooled it.
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Who cites it
45 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Patient reported outcome and experience measures among patients with central venous access devices: a systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Pooled it
- Patient and public perspectives on cell and gene therapies: a systematic review.Nature communications · 2020Pooled it
- Patient-reported outcome measures in older people with hip fracture: a systematic review of quality and acceptability.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2017Pooled it
- Quality and acceptability of measures of exercise adherence in musculoskeletal settings: a systematic review.Rheumatology (Oxford, England) · 2017Pooled it
- Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology.EULAR rheumatology open · 2026Article
- A qualitative study of cancer clinical trial network consumers' acceptability of the modular approach to patient-reported outcome measurement: how much of it is "common sense"?Journal of patient-reported outcomes · 2026Article
- From theory to practice in training health researchers in patient and public involvement: a scoping review protocol.Systematic reviews · 2025Article
- Translation and validation of the Swahili pediatric quality of life family impact module for caregivers of children with congenital heart disease.Scientific reports · 2025Article
- Patient Bridge Role: a new approach for patient and public involvement in healthcare research programmes.BMJ open · 2025Review
- Patient engagement in quality of life research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Association between adjuvant radiation treatment and breast cancer-specific mortality among older women with comorbidity burden: A comparative effectiveness analysis of SEER-MHOS.Cancer medicine · 2023Article
- "Take a walk in someone else's shoes": the role of participatory arts for health research development and training.Research involvement and engagement · 2023Article
- Roadmap to engagement: Bringing patient partners into cancer research and beyond.Journal of clinical and translational science · 2023Article
- Impact of patient and public (PPI) involvement in the Life After Prostate Cancer Diagnosis (LAPCD) study: a mixed-methods study.BMJ open · 2022Article
- Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks.Orphanet journal of rare diseases · 2021Article
- Article
- Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- Engaging a person with lived experience of mental illness in a collaborative care model feasibility study.Research involvement and engagement · 2021Article
- Evaluation of the Content Validity and Cross-Cultural Validity of the Study Participant Feedback Questionnaire (SPFQ).Therapeutic innovation & regulatory science · 2020Article
- Use of a modified World Café process to discuss and set priorities for a Community of Practice supporting implementation of ReQoL a new mental health and quality of life Patient Reported Outcome Measure (PROM).Journal of patient-reported outcomes · 2020Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeRecent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field.
methodsA 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed.
resultsSixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting.
conclusionThis study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.
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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.