#hrql — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #hrql, aggregated by home.social.
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Last week's #ONS seminar "Introducing the UK headline measures of national #wellbeing" was interesting. The session was not recorded but the slides are available here:
https://www.slideshare.net/slideshow/introducing-the-uk-headline-measures-of-national-well-being/286342213Areas of discussion in the Q&A:
- A report on the methodology deriving these indicators potentially to be published.
- Does #BeyondGDP include GDP? -
Important note in this report by the Future #DSM Strategic Committee:
Acknowledgement of the importance of functioning and quality of life (beyond symptoms) and tasking a sub-committee with finding assessments that align with recovery-oriented care
https://psychiatryonline.org/doi/10.1176/appi.ajp.20250878 -
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/
#ISOQOLThis 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 )
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A #SysReview of quality of life and #HRQoL instruments used in trials of interventions for adults with alcohol use disorder:
https://www.jsatjournal.com/article/S2949-8759(25)00172-9/fulltextOne of the interesting findings:
Although the team focused on the most frequently used instruments they found only very few studies reporting psychometric properties in this population.This mirrors findings from our broader #SysReview of #HRQL as an outcome in substance and behavioural addictions
https://pubmed.ncbi.nlm.nih.gov/37439397/ -
Meta-analysis of #TaskShifting / #TaskSharing for managing #Multimorbidity shows some associations w depression (d=-.27, k=14), quality of life (d=.10, k=12), increased anxiety (d=.14, k=5), mortality (OR=.77, k=4).
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Still in the summer write-up of papers?
Have a look at the call for papers on "Quality of life in people with mental disorders – beyond global scores" at Quality of Life Research
https://link.springer.com/collections/cddjbdidbjLinked Editorial
https://link.springer.com/collections/cddjbdidbj -
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 -
Investigating functioning of the #EQ5D -Y-5L in five countries shows that participants can differentiate ordinal response levels, but that measurement quality and scaling functions differ by country and age:
https://www.sciencedirect.com/science/article/pii/S1098301525024830Since this is conceptually similar to violations of invariance in other measurement models, I wonder whether the #utility #valuation literature needs a more formal framework for this and whether #Psychometrics might help with this?
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This #CostUtilityAnalysis of 'academic detailing' to enhance naloxone distribution for opioid users (i) shows it potentially cost-effective at WTP of US$50,000 per #QALY and (ii) it used #UtilityScores developed from #NIDA shared data*
https://link.springer.com/article/10.1007/s40258-025-00991-8* To develop these we used National Institute on Drug Abuse-published #RCT data
https://link.springer.com/article/10.1007/s11136-024-03729-6To me an example how #DataSharing supports research for community infrastructure
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Quick reminder:
"Content validity is defined as the degree to which the content of a measurement instrument adequately reflects the outcome being measured. [...] It is considered to be the most important measurement property".
https://www.sciencedirect.com/science/article/pii/S0895435625002124 -
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 -
#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 -
A new paper discusses workflow development for ePRO symptom monitoring to support PRO(M) implementation into practice using the Action, Actor, Context, Target, Time framework:
https://link.springer.com/article/10.1007/s11136-025-03995-y#HRQL #PatientCentered #ImplementationScience #ParticipatoryResearch
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The development of an interactive platform for applying tree-based IRT models for detection of differential item functioning is summarised in a recent #ISOQOL letter:
https://www.isoqol.org/bridging-the-gap-a-user-friendly-tool-for-evaluating-differential-item-functioning-in-patient-reported-outcome-measures/A related methods paper by the team:
https://link.springer.com/article/10.1007/s11136-023-03560-5 -
A #SysReview (24 studies) synthesises evidence around the impact of adopting different perspectives when valuing child & adolescent #HRQL
https://link.springer.com/article/10.1007/s40273-025-01493-0Results 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.
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"The article focusses primarily on presenting the case for adopting ROM and is a starting point—a primer—for any person working in the field of student counselling, or psychological therapies more generally, who is considering the challenges of adopting ROM."
Quote from:
https://onlinelibrary.wiley.com/doi/full/10.1002/capr.12694 -
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"
https://rdcu.be/ehPIyWe 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
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Trigg et al discussed conceptualisations of meaningful between-group differences:
https://rdcu.be/ehHdDA comment by Kevin Weinfurt advances the discussion w 4 points
https://rdcu.be/ehHfSFrom 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;
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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 -
...the analyses highlight the importance of sleep as a potential driver of adolescent wellbeing, and that the developmental cascade may be different across genders.
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:
https://rdcu.be/d8JXk -
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
https://bmjopen.bmj.com/content/15/1/e087122.full -
In case you are into Christmas and estimands, maybe this article is for you?
https://link.springer.com/article/10.1186/s13063-024-08604-w"In reality, the statistical elf would have found the sample size was too small (nine reindeers) to estimate these estimands reliably using the discussed methods."
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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:
https://mastodon.social/deck/@jrboehnke/113629324934342255 -
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 -
Call for papers for a special collection on
"Quality of life in people with mental disorders – beyond global scores"
https://link.springer.com/journal/11136/updates/27711536
inviting submissions of research and clinical practice using nuanced approaches to health-related quality of life.
#HRQLLinked editorial:
https://rdcu.be/d03qD -
10/x Thanks for reading in case you made it this far.
I noticed that I forgot speakers' affiliations in some of the posts, so please find here again the abstract.
And once again links to the book
https://global.oup.com/academic/product/patient-centered-measurement-9780197572078?cc=gb&lang=en&#and the book review:
https://rdcu.be/dXACh -
8/x The last chapter focuses on the contexts of use of #HRQL measures (e.g., #FDA, agencies, #PatientCentered initiatives). Kevin Weinfurt (👇) and Rebecca Jackson discussed how even the often ignored response options reflect assumptions of how we want to represent what we are measuring!
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5/x Alessandra Basso (LSE) highlighted hermeneutic marginalisation and misrepresentation as injustices 👇
An important question the book raises is how to elicit and integrate all voices and still recognising that all positions are fallible. #Epistemology
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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.
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2/x We had a good panel of presenters.
Melanie Hawkins (Swinburn UT) opened the session with a discussion of how values and assumptions impact on interpretations of scores in application contexts, and how this may reinforce and exacerbate societal inequities.
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1/x It was great fun to co-organise the #ISOQOL discussion of Leah McClimans' book
" #PatientCentered #Measurement: Perspectives from philosophy and health-related quality of life"
https://global.oup.com/academic/product/patient-centered-measurement-9780197572078?cc=gb&lang=en&#You can read the book review by Sebastian Rodriguez Duque here:
https://rdcu.be/dXACh -
Core outcome sets for trials of interventions to prevent and to treat #multimorbidity in adults in low and middle-income countries
https://gh.bmj.com/content/9/8/e015120.infoIn the works since early 2020 w #SysReview, 50 qualitative interviews in 10 countries, Delphi study & consensus meetings.
Enormous thanks to all who made this possible!🙇
Summary of core outcomes 👇 incl. earlier seminal #COSmm work in #HIC.
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Core outcome sets for trials of interventions to prevent and to treat #multimorbidity in adults in low and middle-income countries
https://gh.bmj.com/content/9/8/e015120.infoIn the works since early 2020 w #SysReview, 50 qualitative interviews in 10 countries, Delphi study & consensus meetings.
Enormous thanks to all who made this possible!🙇
Summary of core outcomes 👇 incl. earlier seminal #COSmm work in #HIC.
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Core outcome sets for trials of interventions to prevent and to treat #multimorbidity in adults in low and middle-income countries
https://gh.bmj.com/content/9/8/e015120.infoIn the works since early 2020 w #SysReview, 50 qualitative interviews in 10 countries, Delphi study & consensus meetings.
Enormous thanks to all who made this possible!🙇
Summary of core outcomes 👇 incl. earlier seminal #COSmm work in #HIC.
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Core outcome sets for trials of interventions to prevent and to treat #multimorbidity in adults in low and middle-income countries
https://gh.bmj.com/content/9/8/e015120.infoIn the works since early 2020 w #SysReview, 50 qualitative interviews in 10 countries, Delphi study & consensus meetings.
Enormous thanks to all who made this possible!🙇
Summary of core outcomes 👇 incl. earlier seminal #COSmm work in #HIC.
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New paper out, great collaboration w former #UniOfYork colleague Tom Patton:
https://link.springer.com/article/10.1007/s11136-024-03729-6We harmonized data from #SF12 and #EQ5D using data from the 2000-2001-2003 Medical Expenditure Panel Surveys. We then analysed data from 6 trials (N=1,777 ppl living with opioid use disorder).
Key among multiple findings:
the inclusion of people with lived experience and the measurement of withdrawal symptoms and anhedonia could improve cost-effectiveness models -
The EuroQol foundation's May publication summary included a paper from Quality of Life Research:
Using registry data in Germany, the team investigates #HRQL of adults with spinal muscular atrophy:
https://rdcu.be/dM5h2The other included papers were:
https://link.springer.com/article/10.1007/s40273-024-01379-7
https://www.valueinhealthjournal.com/article/S1098-3015(24)02369-6/abstract
https://www.valueinhealthjournal.com/article/S1098-3015(24)02367-2/fulltext
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Quality of Life Research 05-2024
https://link.springer.com/journal/11136/volumes-and-issues/33-5
#HRQL of people w heart failure in #LMICs
#QOL of people living w mental illness in Africa
https://link.springer.com/article/10.1007/s11136-023-03525-8
#SysReview #SMI #Multimorbidity
#NightshiftEditor seven issues to go...
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Very interesting to hear in our #Postgraduate research forum about work to explore women’s experiences of the diagnostic journey in uterine adenomyosis.
More background is available in the protocol for the ongoing #ScopingReview:
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Looking for a #WeekendRead?
Quality of Life Research 04-2024
https://link.springer.com/journal/11136/volumes-and-issues/33-4
#ISOQOLFor example a #ScopingReview of biopsychosocial factors of #HRQL in individuals with traumatic brain injury
https://link.springer.com/article/10.1007/s11136-023-03511-0Disability-free life expectancy after a #stroke in a South Korean cohort (11yr horizon)
https://rdcu.be/dCLugAssociation of exacerbations in patients with #COPD with #HRQL
https://link.springer.com/article/10.1007/s11136-023-03582-z
#EQ5Dand much more 😊📰📚
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Danish #ValueSet for the #EORTC QLU-C10D based on a quota sample from an online panel (n=1001):
https://link.springer.com/article/10.1007/s11136-023-03569-wThe analyses suggest that the domains with the largest utility decrements are physical functioning, pain, and role functioning.
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Population norms for the #EQ5D-5L in Australia (age >18 yrs), quota sample from an online panel (n = 9,958):
https://rdcu.be/dzyuWThe average index value was 0.86 (SD=0.19), and VAS score 73.2 (SD=21.7), with 23.9% reporting 11111 health state.
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Quality of Life Research 03-2024
https://link.springer.com/journal/11136/volumes-and-issues/33-3, incl.A #SysReview of #HRQL in emergency laparotomy #RCTs
https://link.springer.com/article/10.1007/s11136-023-03531-wcomparison of @promisNIH 29/global physical and #MentalHealth scores
https://link.springer.com/article/10.1007/s11136-023-03559-yand using unsupervised IRT models for assessing sample heterogeneity
https://link.springer.com/article/10.1007/s11136-023-03560-5
#Psychometrics -
A very good piece of news that came just in time for Christmas:
Andrew Dyer, whom I had the honour of co-supervising at #QUBPsych, has defended his PhD! 🎉
If you want to have a first peek at his work on alcohol and #HRQL, you can have a look at this #SysReview that was published earlier this year:
https://onlinelibrary.wiley.com/doi/10.1111/dar.13717 -
December issue of Quality of Life Research published:
https://link.springer.com/journal/11136/volumes-and-issues/32-12
#ISOQOLOpens with a #ScopingReview of the use of visual tools and #EasyRead approaches for #HRQL instruments
https://link.springer.com/article/10.1007/s11136-023-03450-wMulti-stage development of the Norwegian Fatigue Characteristics and Interference Measure
https://link.springer.com/article/10.1007/s11136-023-03477-z
#Stroke #RaschModel #PsychometricsAssociation of body mass index from childhood (12yrs) to mid-adulthood (20-25-30yrs later) w #HRQL
https://link.springer.com/article/10.1007/s11136-023-03497-9
#SF12 #SF6D -
Quality of life as an outcome of psychological treatments in people living w schizophrenia-spectrum disorders:
#MetaAnalysis of 60 independent #RCTs, analysing associations btw treatments (psychoeducation, CBT, cognitive, ...) and QOL (QLS, #WHOQOL, MANSA):
https://www.cambridge.org/core/journals/psychological-medicine/article/which-psychological-interventions-improve-quality-of-life-in-patients-with-schizophreniaspectrum-disorders-a-metaanalysis-of-randomized-controlled-trials/BC266982A851D9B22CB69782578D59FAIt covers subjective (k=45) and objective (k=15) QOL outcomes
#HRQL #BeyondWilsonClearyInterestingly, the latter were more frequently considered as #PrimaryOutcome-s in the analysed studies.
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You would like to engage with #ISOQOL conference content?
How about reading the 2022 article of the year finalists?
1) Association btw 24h movement behaviors and #HRQL in children
rdcu.be/dpqJY
#Winner 🎉2) Perceived benefits and limitations of using patient‑reported outcome measures in clinical practice with individual patients
rdcu.be/dpqKK
#Feedback #SysReview3) #SocialSupport and HRQL among the oldest old
https://link.springer.com/article/10.1007/s11136-021-03070-2
#AgeQualiDe -
#ISOQOL content that conference attendees liked on other platforms:
Julie Ratcliffe presented among other things on their work including insights from the application of #EyeTracking technology when filling out the #EQ5D
https://link.springer.com/article/10.1007/s11136-023-03488-w🔥For papers published in Quality of Life Research in 2023, this is so far the most accessed paper!🥳
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A study investigating the #FaceValidity of four #preference weighted #HRQL measures in residential aged care shows a range of issues related to comprehensibility and questionnaire construction:
https://link.springer.com/article/10.1007/s40271-023-00647-6 -
One publication from Quality of Life Research was mentioned in the #EuroQol Group's September selection:
The study investigated #EQ5D response heterogeneity assoc w respondents' focus on past, present & future (time perspective):
https://link.springer.com/article/10.1007/s11136-023-03509-8