A #SysReview exploring impacts of community-based interventions for adults with #multimorbidity on clinical and patient-reported outcomes (25 studies):
https://bmjpublichealth.bmj.com/content/4/1/e004156
Quick comparison of identified outcomes with the two central #CoreOutcomeSets 👇
The Alberta PROMs and #EQ5D Research and Support Unit (APERSU) is an initiative that operates across the health system. Read about the development of its patient engagement network, that aims to connect those whose experiences collectively reflect the broad scope of PROMs use in Alberta:
https://link.springer.com/article/10.1186/s41687-026-01001-8
Patient and public involvement and engagement (PPIE) is crucial for developing patient-centered healthcare research and improving health outcomes. While pa
Submissions to the 7th UK-EU SPR conference are open until
🔥📆 Friday 27th February
https://www.psychotherapyresearch.org/page/uk-eu-spr2026
The conference theme is
Putting #Psychotherapy Practice at the Heart of Research: Amplifying the Clients' Voices
Last time I tried to reach Bristol, a certain volcano made it impossible. 🌋 #Iceland
Maybe there is a chance this year? 😅
Publication proposing a 'Comprehensibility Continuum' method to demonstrate #PatientReported outcome measure comprehensibility systematically and consistently from interview data:
https://link.springer.com/article/10.1007/s11136-024-03858-y
Purpose Evidence of comprehensibility is frequently required during the development of patient reported outcome measures (PROMs); the respondent’s interpretation of PROM items needs to align with intended meanings. Cognitive interviews are recommended for investigating PROM comprehensibility, yet guidance for analysis is lacking. Consequently, the quality and trustworthiness of cognitive interview data and analysis is threatened, as there is no clear procedure detailing how analysts can systematically, and consistently, identify evidence that respondent interpretations align/misalign with intended meanings. Methods This paper presents a novel, structured approach to comprehensibility analysis - the ‘Comprehensibility Continuum’ – that builds upon existing cognitive interview guidance. Results The Comprehensibility Continuum comprises a structured rating scale to code depth of alignment between intended item meaning and respondent interpretation and consists of five main stages: before cognitive interviews are conducted, researchers must (1) Define intended meanings of PROM items; and (2) Determine comprehensibility thresholds for both participant- and item-level. After conducting interviews, they (3) Prepare data by transcribing interviews ‘intelligent’ verbatim; (4) Code transcripts using the Comprehensibility Continuum scale in iterative sets, assigning an overall code for each item at participant-level; and (5) Compare participant-level codes across all participants to determine overall item comprehensibility, such that decisions can be made to retain, modify, or remove items. Conclusion Quality in qualitative data analysis is achieved through rigorous methods that are clearly described and justified. Given insufficiency in guidelines, cognitive interviewers must reflect on how best to demonstrate PROM comprehensibility systematically and consistently from interview data, and the Comprehensibility Continuum method offers a potential solution.
Webpage live for the
10th UK Patient Reported Outcome Measures Research Conference
https://sheffield.ac.uk/smph/events/10th-uk-patient-reported-outcome-measures-proms-research-conference
The conference is an opportunity to reflect on progress in the past decade and to explore the future of PROMs in practice, policy, and research.
Going back to where the journey started in 2016:
Sheffield #SCHARR
23rd June 2026
We are delighted to announce that the 10th UK Patient Reported Outcome Measures (PROMs) Conference will be hosted in Sheffield on Tuesday 23 June 2026.Now in its tenth year, the UK PROMs Conference brings together researchers, clinicians, patients, policymakers, and industry partners to share the latest developments in the field of patient-reported outcome measurement. Over the past decade, this conference has become a cornerstone for advancing best practice and innovation in how patient experiences and outcomes are measured and used to improve care.
How to engage w collaborators in health state valuation, how to include their voices?
https://link.springer.com/article/10.1007/s40273-025-01550-8
Based on 37 guidance documents and studies, the team develops a 15pt framework for developing guidance to improve practice in the field.
Background and Objective Collaborative engagement with individuals invested in or affected by health research, beyond researchers themselves, is advantageous and encouraged by major funding bodies. However, the degree of collaborative engagement in health state valuation is unclear. A scoping review was conducted to (i) identify recommendations on best practice in collaborative engagement in health economics and related literature; (ii) identify examples of collaborative engagement in valuation studies; and (iii) map (ii) onto (i) to identify current practice and future recommendations. Methods Eight databases were searched in March-May 2024, with grey literature searches in August-September 2024. For objective (i), reports or manuscripts in health economics or patient-reported outcome measure development/evaluation of any date providing recommendations for collaborative engagement were included. For objective (ii), articles published since 2019 featuring health state valuation and collaborative engagement were included. Best practice recommendations were extracted and thematically synthesised. Examples of collaborative engagement were extracted and mapped against recommendations. Results Twenty-two records featuring recommendations and 15 valuation studies were included. A 15-item framework of emerging best practice recommendations for collaborative engagement was synthesised. Most examples of collaborative engagement involved patients and/or experts helping inform health states for valuation. There was no evidence for 9 out of 15 synthesised recommendations having been applied in any of the valuation studies and only minimal evidence was extracted for the remaining six. Conclusions Collaborative engagement in health state valuation is underdeveloped and unaligned with literature recommendations. A 15-point framework has been developed as a strategic starting point for developing guidance to improve practice in the field.
Three calls for papers from JPRO:
https://jpro.springeropen.com/articles/collections
Translation and Validation of Patient-Reported Outcome (PRO) Measures
PROs in Clinical Registries
Patient-Reported Outcome Measures (PROMs) in Telehealth
Amrita Basu presents development and implementation of a system for monitoring patient-reported data via ePROs in the I-SPY2 Trial
https://pmc.ncbi.nlm.nih.gov/articles/PMC11648710/
#ISOQOL
This is a great example of papers that elucidate practical challenges of PRO capture (see our call for more such work in this editorial https://rdcu.be/eMp57 )
We describe the development and implementation of a system for monitoring patient-reported adverse events and quality of life using electronic Patient Reported Outcome (ePRO) instruments in the I-SPY2 Trial, a phase II clinical trial for locally ...
Rehabilitation is often criticised for its focus on physical and functional recovery, at the expense of recognising the profound social and psychological impacts of illness and injury:
https://www.frontiersin.org/journals/rehabilitation-sciences/articles/10.3389/fresc.2025.1665527/full
Perspectives of service providers, caregivers and adolescent patients in this study suggest that if patients are asked to complete PROMs, there is a duty of care for this information to be reviewed and acted upon:
https://link.springer.com/article/10.1007/s11136-025-03996-x
Purpose To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits. Methods This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia. Results Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a ‘general health tracking questionnaire’ and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program. Conclusion Consumer engagement produced important insights that would’ve otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.
Jan R. Boehnke
