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
#PatientCentered #Psychometrics #ScaleDevelopment #HRQOL
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.
Huntington’s: FuRST 2.0 targets early function; AMT-130’s 3-year percent is inside - Karmactive
FuRST 2.0 puts patient reports at the center of early HD tracking, while AMT-130 posts a multi-year efficacy percent that’s driving attention—check the exact number, the 20-minute step, and what’s next.
#PersonCentred care refers to health care that is respectful of and responsive to personal experiences, preferences, needs, goals and values of service users.
Read our discussion piece on how we measure and evaluate such care and the potential place for #PatientReported outcomes in it:
https://www.frontiersin.org/journals/health-services/articles/10.3389/frhs.2025.1578037/full
#PatientCentered #HRQL
Frontiers | Time is now to consider how we evaluate person-centred care—the role of patient-reported outcomes
Person-centred care refers to health care that is respectful of and responsive to personal experiences, preferences, needs, goals and values of service users...
How to select relevant items for monitoring? Case example of a pragmatic process for mapping immune checkpoint inhibitor #SideEffects to items from existing item libraries ( #CTCAE #EORTC #FACIT )
https://jpro.springeropen.com/articles/10.1186/s41687-025-00855-8
#HRQL #JPRO #PatientCentered #PatientReported #ePRO
Mapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems - Journal of Patient-Reported Outcomes
Background Monitoring for the side effects of novel therapies using patient-reported outcomes (PROs) is critical for ensuring patient safety. Existing static patient-reported outcome measures may not provide adequate coverage of novel side effects. Item libraries provide a flexible approach to monitoring for side effects using customized item lists, but the ideal process for matching side effects to items sourced from multiple item libraries is yet to be established. We sought to develop a pragmatic process for mapping side effects to items from three major item libraries using immune checkpoint inhibitor (ICI) side effects as an example. Methods Using a consumer- and clinician-driven list of 36 ICI side effects, two authors independently mapped side effects to Common Terminology Criteria for Adverse Event (CTCAE) terms, and then to three item libraries: the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), the European Organisation for Research and Treatment of Cancer (EORTC) Item Library, and the Functional Assessment of Chronic Illness Therapy (FACIT) searchable library. The rates of inter-rater agreement were recorded. Following item collation from the item libraries, we devised criteria for selecting the optimal item for each side effect for inclusion in a future electronic PRO system based on guidance from the above groups. Results All 36 side effects mapped to at least one CTCAE term, with eight mapping to more than one term. Twenty-three side effects mapped to at least one PRO-CTCAE term, 35 side effects mapped to at least one EORTC item, and 31 side effects mapped to at least one FACIT item. The inter-rater agreement rate was 100% (PRO-CTCAE), 83% (EORTC) and 75% (FACIT). Pre-determined criteria were applied to select the optimal item for each side effect from the three item libraries, producing a final 61-item list. Conclusion Using ICI side effects as an example, we developed a pragmatic approach to creating customized item lists from three major item libraries to monitor for side effects of novel therapies in routine care. This process highlighted the challenges of using item libraries and priorities for future work to improve their usability.
Jan R. Boehnke
Karmactive