#isoqol — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #isoqol, aggregated by home.social.
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Webpage live for the
10th UK Patient Reported Outcome Measures Research Conference
https://sheffield.ac.uk/smph/events/10th-uk-patient-reported-outcome-measures-proms-research-conferenceThe conference is an opportunity to reflect on progress in the past decade and to explore the future of PROMs in practice, policy, and research.
Going back to where the journey started in 2016:
Sheffield #SCHARR
23rd June 2026 -
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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Great to see @hudsongolino.bsky.social presenting on AI-GENIE at #ISOQOL
Firstly, the community hears and uses the words "the #PrePrint is out" too rarely, and here it is:
https://osf.io/preprints/psyarxiv/fgbj4_v2Second, it is great to see the strong theoretical underpinnings of exploratory graph analysis making their way into promising applications
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0174035 -
Roughly 2 weeks left to submit to JPRO's #SpecialIssue
"Patient and Public Involvement and Engagement"
https://www.springeropen.com/collections/PPIE
#PPIEThe aim is to capture the use of Patient and Public Involvement and Engagement (#PPIE) in Patient-Reported Outcome-related research, such as the development of PRO measures and electronic PRO (ePRO) systems, as well as the implementation of PRO measures for healthcare research and clinical practice.
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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 -
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 -
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 -
7/x Leah took the last straw the audience was holding on to:
No, even when thinking about clocks and time, ongoing coordination is an issue. There is no #GoldStandard for time, its #measurement is under constant development.
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6/x Rick Sawatzky's recorded input focused on #Exchangeablility and discussed how the term #PatientCentered measurement may relate to ideographic and nomothetic methods.
You can find out more about Rick's work here:
https://healthyqol.com/about-ephm -
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 -
Programme for the final day of #ISOQOL once again jam-packed*
I am looking forward to chairing #Plenary4 "Broaden the scope: health outcomes assessment beyond PROs" with a great line-up of speakers and topics.
Cologne music suggestion:
Bukahara: Tales of the Tides
https://www.youtube.com/watch?v=9GKmDK_EMhE*Learn German?
"pickepackevoll" -
Really glad how our symposium around Leah McClimans' book " #PatientCentered #Measurement: Perspectives from philosophy and health-related quality of life" went.
I really enjoyed working with Leah on this as well as reading her thought-provoking book:
https://global.oup.com/academic/product/patient-centered-measurement-9780197572078?cc=gb&lang=en&#
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And there is #ISOQOL pushing the #preregistration methodology maybe a bit too far 🤭
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Tuesday programme at #ISOQOL
Looking forward to presenting our #Symposium4 on #PatientCentered #measurement with perspectives from philosophy and #HRQL researchers.
Co-organised by Leah McClimans and myself, we have invited a set of stellar colleagues to discuss key themes from her new book!
https://global.oup.com/academic/product/patient-centered-measurement-9780197572078?cc=gb&lang=en&# -
And #3/
In terms of music from the Cologne area for #ISOQOL attendees, why not listen to a nice cover version of a Number 1 hit by #Erdmöbel?
https://www.youtube.com/watch?v=aQXRCKKU87oWorried about the German lyrics? Check here 😊
https://genius.com/Erdmobel-der-weg-nach-mandalay-lyricsThanks to @md for pointing out that they are from the area, and there were additional recommendations:
https://social.cologne/@md/113292499375957926 -
#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:
https://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 -
Monday programme at #ISOQOL starting with the official opening and president's address.
The conference abstracts have been published just in time:
https://link.springer.com/article/10.1007/s11136-024-03786-xToday, I'll chair my last QLR board meeting and Oral Session 109 on guidelines and good practices.
For the evening #ISOQOL_NewInvestigators kindly invited me and #JPRO Rasa Ruseckaite to present on manuscript writing.
I am looking forward to meeting my 2024 mentees at the #Mentoring reception.
Edit:
#HRQL #HealthEconomics -
#2/ For international attendees of #ISOQOL, why not listen to another band from Cologne, the Schäl Sick Brass Band?
Their song "Lappemann" was apparently inspired by an Iranian folk melody and is about one of the characters in the Cologne #Karneval:
https://www.youtube.com/watch?v=y8v8cB83GlE&list=OLAK5uy_lJJVQKB4a_SH20b0zQNfZxMqDaap0lAyQ&index=32Some additional explanation (in German)
https://rheinische-landeskunde.lvr.de/de/institut/institut_kamellebueggel/pappnase/pappnase.html -
#1/ First day of #ISOQOL started with an interesting symposium on progress when optimizing the collection of patient-reported outcomes in clinical trials.
Part of the discussion were desirable changes to the publication system when publishing expert consensus and guidance documents:
1) What does #PeerReview for such a document look like?
2) Static journal publications may not be the best format for such documents.
Both seem solvable, no?
#HTD -
My opening credits for #ISOQOL
#1/
Greeted on the Hohenzollernbrücke with a statement from the results of the #SoliMed #Gesundheitsatlas #Köln 👇
https://solimed-koeln.de/gesundheitsatlas-koeln/
#SDoH #SocialDeterminants #Epidemiology#2/
Then my final meeting as Editor in Chief of Quality Of Life Research. Counting down the issues, with the October one just out (two more to go):
https://link.springer.com/journal/11136/volumes-and-issues/33-10 -
Preparing for #ISOQOL 2024?
How about listening to some music to get you in the mood?
https://www.youtube.com/watch?v=-Q-qxbz17eILearn about Schäl Sick Brass Band:
https://www.womex.com/virtual/westpark_music/schal_sick_brass_band
(dis-banded unfortunately)Learning about 'Schäl Sick' in English is surprisingly difficult, but here are at least some pointers where it is geographically and what to see 😂
https://hidden-gems-cologne.de/en/schaelsick/#HRQL #Conference #HealthEconomics #Cologne #PatientCentered
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I finished my two terms as Co-Editor in Chief at "Quality of Life Research" in June and I am now supporting the transition to the new leadership.
I might start to post some reflections here, a beginning was made at least:
https://linkedin.com/feed/update/urn:li:activity:7222649175128109057/ -
The #PrismaCosmin #guideline
was published jointly in Quality of Life Research, J of Patient Reported Outcomes, Health and Quality of Life Outcomes & J of Clinical Epidemiology.As lead editors, Brittany Lapin and I offer some thoughts on content, process, and future
https://osf.io/preprints/osf/ukw93#PRISMA #Psychometrics #HRQL #ISOQOL
The four versions of the guidelines are published here:
https://link.springer.com/article/10.1007/s11136-024-03634-yhttps://jpro.springeropen.com/articles/10.1186/s41687-024-00727-7
https://hqlo.biomedcentral.com/articles/10.1186/s12955-024-02256-9
https://www.sciencedirect.com/science/article/pii/S089543562400177X
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More content and comments on #MWMsymposium later here. I am in the 2pm slot, so may not have an opportunity to provide comments on those presentations.
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Mentally preparing for the
#MWMsymposium later today, giving a brief input on severe mental illnesses and #multimorbidity in relation to social determinants of health and health-related quality of life.I'll be posting here later about the talks, but here I share some resources I'll talk about 👇🧵
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It was a really excellent first day at #MWMsymposium, thank you to all presenters!
I have posted some reflections and resources from the presenters in my🟦feed:
https://bsky.app/profile/jrboehnke.bsky.socialTomorrow you will find me posting here about the talks.
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A team investigated to which degree construction methods for anchor-based minimal important difference methods are sensitive to the distribution of the #ChangeScore
https://link.springer.com/article/10.1007/s11136-024-03610-6
(Code in supplement)Terluin et al argue that such simulations need to consider measurement error (& illustrate how)
https://rdcu.be/dNAJz
OSF https://osf.io/m5tuy/The original authors respond with a community call👇
https://rdcu.be/dNAJ9
OSF https://osf.io/hgsu7 -
The reporting guideline for #SysReviews of outcome measurement instruments offers great resources to support the planning and write-up of such reviews
https://link.springer.com/article/10.1007/s11136-024-03634-yWe invited response letters to support the discussion, the first 3 are published here:
3) https://link.springer.com/article/10.1007/s11136-024-03732-x
4) Response by the PRISMA-COSMIN team
https://rdcu.be/dNuz3More letters to come, stay tuned!
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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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Programme info from #ISOQOL regarding the #MWMsymposium:
It will kick off with an introduction to social determinants of health #SDoH. Speakers will discuss its relevance to #HRQL and its application in addressing health outcomes.
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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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All the best to the new leadership of our sister journal at #ISOQOL! 👏
If you don't know about them, check them out here:
https://jpro.springeropen.com#HRQL #PatientCentered #Psychometrics #ImplementationScience
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Newsletter reporting Quality of Life Research awards and statistics from 2022
https://www.isoqol.org/news-from-quality-of-life-research-2024/We (+ Brittany Lapin, Richard Skolasky) are immensely grateful to all authors submitting, our team of associate editors, and everyone else supporting the journal (e.g., peer-review, language editing)!
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Explore research from #ISOQOL23, abstracts now published:
https://rdcu.be/dr2hGHave also a look at the October issue of #ISOQOL #QualityTALK, which highlights ten of the presentations:
https://www.isoqol.org/qualitytalk-18-october-2023/#HRQL #Psychometrics #HealthEconomics #PatientCentered
Edit: spelling hashtag -
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 -
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 -
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 -
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 -
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 -
If you want to follow up with some content that was presented at #ISOQOL, have a look at these items in the society's newsletter:
https://www.isoqol.org/category/science/The items dated 17.10.2023 contain a number of summaries of presentations, for example:
Measuring QOL of children and adolescents with advanced cancer #HRQL
Scaling up a measurement model for rare disease clinical trials #RCT
Contextualizing PROMs using personas and journey maps
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#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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Joanne Greenhalgh offers in her presidential address opening the 30th annual meeting an overview across the decades of #ISOQOL.
Humbling to be reminded that I am leading an institution that pre-dated many of the society's activities and was instrumental in setting it up.
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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 -
October issue of Quality of Life Research #ISOQOL
https://link.springer.com/journal/11136/volumes-and-issues/32-10Opens w a #ScopingReview of the use of the visual analogue scale for valuing #HealthStates, arguing that inconsistent design makes comparisons across studies challenging:
https://link.springer.com/article/10.1007/s11136-023-03411-3
#Psychometrics #HealthEconomics #QALYOr read about the #EvidenceGap map for interventions for improving clinical outcomes and #HRQL for people living with skeletal dysplasias
https://link.springer.com/article/10.1007/s11136-023-03431-z -
Less than two weeks to go #ISOQOL
Looking forward to be once again part of the pre-#conference workshops, this time with my esteemed colleague Claudia Rutherford (U Sydney)!
Find out about other conference workshops here:
https://www.isoqol.org/events/30th-annual-conference/program/ -
Members of the #ISOQOL_CP and #ISOQOL_PE discuss three case studies from the UK, USA, Australia collated to explore how adherence to PROMs can be evaluated and understood
https://link.springer.com/article/10.1007/s11136-023-03505-yFocusing on #HelthCare systems, patients, clinical teams, and #QualityImprovement in measurement, the authors derive nine key recommendations for future research and practice (Table 3):
https://link.springer.com/article/10.1007/s11136-023-03505-y/tables/3 -
In #ISOQOL-s #QualityTALK, Carolyn Schwartz provides an insight into her development as a researcher
https://www.isoqol.org/the-story-behind-the-elephant-in-the-room-a-long-journey-begins-with-a-single-step/Reflecting on research experiences with people living with Multiple Sclerosis, she realised that what was important to patients did not form a consistent hierarchy of domains for each patient over time. This led her into #ResponseShift research and she discusses her most recent #SysReview on the importance of the phenomenon in #RCTs #Trials:
https://jpro.springeropen.com/articles/10.1186/s41687-022-00510-6 -
Members of #ISOQOL_CP discuss in #QualityTALK #ImplementationScience for #HRQL research:
https://www.isoqol.org/why-proms-in-clinical-practice-matter-an-introduction-to-the-clinical-practice-special-interest-group/IS acknowledges dynamic relationships between individual clinicians and the wider context of the intervention (e.g., organizational context, structures, patient engagement). It is highly useful for developing PROMs and #FeedbackSystems.
The group published five articles explaining these ideas in more detail in our #FeedbackTools special issue:
https://link.springer.com/journal/11136/volumes-and-issues/30-11