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#hrql

1 post1 participant0 posts today
Public
Jan R. Boehnke

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
Public
Jan R. Boehnke

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
Public
Jan R. Boehnke

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.
#HRQL#JPRO#PatientCentered
Continued thread
Public
Jan R. Boehnke

...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”
Public
Jan R. Boehnke

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.
#HRQL#PatientCentered#DundeeUni
Public
Jan R. Boehnke

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

Screenshot of the intro of the ISOQOL news item, with the following text: News from “Quality of Life Research” Nov 21, 2024 Jan R. Boehnke, PhD, Brittany Lapin, PhD MPH, and Jessica Roydhouse, PhD Quality of Life Research Co-Editors-in-Chief The Co-Editors in Chief of Quality of Life Research (QLR) would like to thank ISOQOL and its members for their support in 2023. We received 1,903 submissions and accepted 247 articles. The journal’s editorial board managed high workloads and helped us identify relevant content for the community of (health-related) quality of life researchers. Importantly, 727 unique reviewers contributed at least one review, supporting the high quality of our content.
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
Public
Jan R. Boehnke

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.

Speaker behind a lectern and in front of a screen showing a slide with the title "Ongoing Coordination" making four points: To ground our inferences about how to interpret and use measures we need to coordinate instruments with the constructs we are trying to understand. Coordination is the activity of establishing the link between our instruments and the constructs they purport to measure. In measurement, it is an inherently circular activity: we can only test our understanding of a property, like temperature, through the very instruments we designed based on that understanding – thermometers. How can we make the circle virtuous rather than vicious if our values and assumptions are inherently mixed in?
#Measurement#HRQL#PhilosophyOfScience
Public
Jan R. Boehnke

#ISOQOL

#1/
Excellent talk by Kevin Weinfurt in #Plenary1 discussing multiple types of measures (go also to #Plenary4 for that!), increased use of high-intensity longitudinal data, and generative AI for assessments.

Start reading his work:
rdcu.be/dWXSz
#HRQL #Psychometrics

#2/
Not sure this is what the #ISOQOL_NewInvestigators wanted when asking me to talk about advice for manuscript writing, but this is the slide people talked to me about 👇
#NightshiftEditor #ScientificPublishing

Slide with the title "Advice: Don't be fooled!" and some bullet points saying: …by people with long publication lists; …by people who are long in the game; …by people who advocate guidelines and established methods over creativity; …by people who speak with authority and dogma. Next to the text on the right-hand side is a diagram representing a two-propeller plane from WWII era which shows where returning planes were hit. Read more: https://en.wikipedia.org/wiki/Survivorship_bias
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