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#hrql

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A #SysReview (24 studies) synthesises evidence around the impact of adopting different perspectives when valuing child & adolescent #HRQL
link.springer.com/article/10.1

Results show that differences in mean values arise with different perspectives on severe child #HealthStates. These differences are influenced by factors such as health state severity and valuation method. Uncertainty remains regarding the optimal choice of preference elicitation and anchoring methods.

SpringerLinkHow do Health State Values Differ When Respondents Consider Adults Versus Children Living in Those States? A Systematic Review - PharmacoEconomicsObjectives This systematic review examines how different perspectives influence the valuation of child health-related quality of life (HRQoL). Specifically, it explores differences in values when health states are assessed by children, adolescents, or adults (or some combination of these), from the perspective of the first person (self) or the third person (other), and whether specifying (or not) the age of the person living the described health state affects the valuations. Recent studies suggest discrepancies for descriptively similar health states potentially owing to differences in respondents’ willingness to trade length-of-life for quality-of-life for children, though findings are inconsistent. This review aims to assess: (1) differences in peoples’ willingness to trade, (2) differences between the relative importance of dimensions, and (3) factors influencing these differences. Methods This systematic review follows PRISMA guidelines. A search in Ovid MEDLINE, Ovid Embase, and EconLit up to November 2024 was undertaken. We included studies where different perspectives and different valuation instruments were considered. We extracted information on study characteristics, instruments, valuation methods, perspective, study design, analytical methods, sample characteristics, differences in values by respondents, and perspective. A multi-level meta-regression assessed the impact of factors affecting the mean differences between perspectives. Results In total, 24 studies were included, which were from 2004 to 2024. Studies used a range of preference elicitation methods and nearly half (38%) used mixed valuation methods. Most studies (71%) used the EQ- 5D-Y- 3L instrument. Overall, 54% of studies compared adults valuing health states for themselves, or other adult versus adults valuing for other children or themselves as children. The multi-level meta-regression found that the severity of the health state and the valuation method has a significant impact on the mean differences between child and adult values for child health states. In most of the studies when adults are respondents, pain or discomfort was considered as the most important dimension. When adolescent respondents value health states the results are mixed. Qualitative studies identified respondents’ difficulty imagining a child in ill health and becoming emotional while thinking about child poor health and early death as potential reasons behind differences in child values versus adult values. Conclusions The evidence suggests that differences in mean values arise when different perspectives are used in valuing severe child health states by adults. These differences are influenced by factors such as health state severity and valuation method. While the review identified the key factors influencing the differences in mean values, an uncertainty remains regarding the optimal choice of preference elicitation and anchoring methods for child health state valuations. Addressing these gaps could refine future valuation methods for child health-related quality-of-life instruments.

The March* issue of Quality of Life Research includes the call for papers
"Quality of life dimensions in people living with mental disorders: moving beyond global scores"
rdcu.be/ehPIy

We encourage submissions of research and practice using nuanced approaches to #HRQL & #QOL, adopting the term “mental disorder” broadly, e.g., based on standard diagnoses or using transdiagnostic perspectives.

#SMI #HRQL #PatientCentered #Psychometrics #ClinicalPsychology #PsychotherapyResearch

* 👇

rdcu.beQuality of life dimensions in people living with mental disorders: moving beyond global scores

Trigg et al discussed conceptualisations of meaningful between-group differences:
rdcu.be/ehHdD

A comment by Kevin Weinfurt advances the discussion w 4 points
rdcu.be/ehHfS

#RCT #Estimand #HRQL

From the abstract:

(1) rather than “between-group difference,” specify the level at which you wish to infer a treatment effect: population or individual;

(2) points of reference may be different for interpreting individual- and population-level treatment effect estimates;
...

rdcu.beConceptualizing meaningful between-group difference in change over time: a demonstration of possible viewpoints

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 )
jpro.springeropen.com/articles

SpringerOpenMapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems - Journal of Patient-Reported OutcomesBackground 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.
Continued thread

...the analyses highlight the importance of sleep as a potential driver of adolescent wellbeing, and that the developmental cascade may be different across genders.

#CYPMH #MentalHealth

Read Claudia Rutherford's and my thoughts when launching this format in the journal and why we thought #RegisteredReports would fit well into #HRQL #HealthEconomics #RCT research processes:
rdcu.be/d8JXk

rdcu.beRegistered Reports at “Quality of Life Research”

A #ScopingReview (n=6) from one of our #ProfDoc students highlights the profound impact of adenomyosis and how important a better understanding of the lived experience is to improve diagnostic pathways
bmjopen.bmj.com/content/15/1/e

BMJ Open · Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping reviewObjectives Uterine adenomyosis is a common gynaecological disease that can be debilitating. It is poorly understood and may be overlooked in clinical settings. A research gap exists as there are currently no published scoping reviews on perceptions and experiences early in the illness course. As part of a professional doctorate thesis, the aim of this review is to systematically retrieve and describe available literature, exploring the impact of living with adenomyosis and perceptions of the diagnostic journey. Design A scoping review is conducted using JBI methodology. Data sources Medline, CINAHL Plus, Web of Science, Google Scholar, Cochrane library, JBI and PROSPERO databases, EThOS online and Google. Searches were made from database inception to July 2023. Eligibility criteria The characteristics of the evidence sourced were deliberately broad. Studies exploring the experiences and perceptions of women diagnosed with adenomyosis were considered. Data extraction and synthesis Titles and abstracts were initially screened. Subsequently, eligibility was clarified through methods section inspection, and the remaining studies were read in depth. A manual hand-search of references of selected studies was conducted. Prespecified data were extracted, charted and categorised into themes. Results Six eligible studies were found, with themes describing impact and burdens, as well as several categories of unsupported needs. No studies specifically focused on perceptions of the diagnostic journey, but some eligible studies made minor reference to this and are included. Conclusions This review highlights the profound impact of adenomyosis and is the first to explore the lived experiences and the diagnostic journey. Understanding the burdens of disease in terms of perceptions and lived experience in combination with the experiences of diagnostic interactions is vital to improving diagnostic pathways. Education with improved multidisciplinary collaboration and further qualitative and case study research will be crucial to achieve this goal. Registration A priori protocol was registered (<https://doi.org/10.17605/OSF.IO/2UDYN>) and published (<https://doi.org/10.1136/bmjopen-2023-075316>). All data relevant to the study are included in the article or uploaded as supplementary information.

When you leave a job, there is always unfinished business, stuff that could have gone better etc.

Therefore, I am glad to see that "Quality of Life Research" has passed 2,000 submissions this week, which makes 2024 (so far) the year with the second most submissions (after 2020) in the history of the journal.

Thanks to authors and reviewers supporting us! 🙇

#ISOQOL #HRQL #HealthEconomics

Earlier news post on paper awards and usage:
mastodon.social/deck/@jrboehnk

MastodonJan R. Boehnke (@jrboehnke@mastodon.social)Attached: 1 image Read about the editors' choice papers, most downloaded, and interacted paper in "Quality of Life Research": https://www.isoqol.org/news-from-quality-of-life-research-112024/ The last annual update I will be involved in... 😅👋 #ISOQOL #HRQL #HealthEconomics #Psychometrics #EQ5D #COSMIN #PROMIS
Continued thread

3/x Sebastian Rodriguez Duque (McGill U) discussed "ongoing coordination", i.e. the process how we establish a link btw our instruments and the constructs they purport to measure.

One of the points of modern validity theory (and where philosophers and methodologists deviate strongly from what is perceived and enacted practice) is, that this process essentially never ends.