Patients as partners in a research advisory council role: describing the APERSU Patient Engagement Network - Journal of Patient-Reported Outcomes

Patient and public involvement and engagement (PPIE) is crucial for developing patient-centered healthcare research and improving health outcomes. While pa

Initial Strategy for the Future of DSM | American Journal of Psychiatry

PsychiatryOnline.org is the platform for all American Psychiatric Association Publishing journals, DSM, and bestselling textbooks, as well as APA Practice Guidelines, and continuing medical education.

The comprehensibility continuum: a novel method for analysing comprehensibility of patient reported outcome measures - Quality of Life Research

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.

10th UK Patient Reported Outcome Measures (PROMs) Research Conference

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.

Journal of Patient-Reported Outcomes

The Journal of Patient-Reported Outcomes (JPRO) is an international, open-access, fully peer-reviewed multi-disciplinary journal publishing original ...

Quality of life measures in treatment for active substance misuse: a scoping review - Quality of Life Research

Purpose Unlike previous reviews on quality of life (QoL) and substance use disorders (SUD), this scoping review focuses on QoL within the context of SUD treatment and active substance misuse. This review delineates and describes QoL measures, assesses their application, and explores the influence of demographics on QoL outcomes. Methods Five databases were searched (EMBASE, Web of Science, PsycINFO, PubMed, and Scopus) using keywords related to QoL, clinician-verified SUD, and SUD treatment. All studies were published in English before June 1st, 2025. Two reviewers screened abstracts and full text for eligibility and study elements. The first author extracted data regarding methodology, substance use, treatment, and QoL measures. The PRISMA-ScR checklist guided this study and the reporting process for rigor and transparency. Results Of the 11,078 initially identified articles, 108 were extracted for analysis. QoL measures accounted for multiple domains (e.g., physical, psychological, social, environmental, independence, security, and spiritual). Studies included male and female participants, all over the age of 18. Results found that many studies under-reported race, ethnicity, and cultural contexts, as well as high variability in the definition of QoL domains and standardization across treatment locations and geographic regions. Studies from Asia primarily showed preference for the WHOQOL-BREF measure compared to North America and Europe, which showed varied preference for measures. The most common QoL domains assessed were psychological, physical, and social. Conclusion This review highlights the need to operationalize QoL domains and assessment approaches in SUD treatment research to facilitate meaningful comparisons and enhance our understanding of treatment effectiveness.

OSF