#isoqol — Public Fediverse posts

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-conference

The 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

#HRQOL #PatientCentered #ISOQOL

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-conference

The 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

#HRQOL #PatientCentered #ISOQOL

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-conference

The 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

#HRQOL #PatientCentered #ISOQOL

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/
#ISOQOL

This 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 )

#HRQL #PatientCentered

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_v2

Second, 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

#Psychometrics #HRQOL

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_v2

Second, 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

#Psychometrics #HRQOL

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_v2

Second, 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

#Psychometrics #HRQOL

Roughly 2 weeks left to submit to JPRO's #SpecialIssue
"Patient and Public Involvement and Engagement"
https://www.springeropen.com/collections/PPIE
#PPIE

The 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.

#ISOQOL #HRQOL #PatientCentered #Psychometrics

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

#Psychometrics #HRQL

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

#HRQL #ISOQOL #PhilosophyOfScience #PatientCentered

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.

#PhilosophyOfScience #ISOQOL

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

#Philosophy #ISOQOL

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.

#PhilosophyOfScience #Measurement #HRQL #ISOQOL

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

#HRQL

https://mastodon.social/deck/@jrboehnke/113315840967665589

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

#HRQL #PatientCentered

*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&#

#ISOQOL #HRQL

And there is #ISOQOL pushing the #preregistration methodology maybe a bit too far 🤭

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=aQXRCKKU87o

Worried about the German lyrics? Check here 😊
https://genius.com/Erdmobel-der-weg-nach-mandalay-lyrics

Thanks to @md for pointing out that they are from the area, and there were additional recommendations:
https://social.cologne/@md/113292499375957926

#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:
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-x

Today, 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=32

Some 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

#NightshiftEditor #RCT #ScientificPublishing

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

#ISOQOL2024 #HRQL #HealthEconomics

Preparing for #ISOQOL 2024?

How about listening to some music to get you in the mood?
https://www.youtube.com/watch?v=-Q-qxbz17eI

Learn 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

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/

#AcademicPublishing #HRQL #HealthEconomics #ISOQOL

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-y

https://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

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.

#ISOQOL #SDoH

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 👇🧵

#SMI #HRQL #SDoH #DundeeUni #LivingWellUoD #ISOQOL

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.social

Tomorrow you will find me posting here about the talks.

#SDoH #HRQL #Epidemiology #ISOQOL

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

#ISOQOL #Psychometrics #FridayRead

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-y

We invited response letters to support the discussion, the first 3 are published here:

1) https://rdcu.be/dNuyj

2) https://rdcu.be/dNuzs

3) https://link.springer.com/article/10.1007/s11136-024-03732-x

4) Response by the PRISMA-COSMIN team
https://rdcu.be/dNuz3

More letters to come, stay tuned!

#Psychometrics #AcademicWriting #ISOQOL

Quality of Life Research 05-2024

https://link.springer.com/journal/11136/volumes-and-issues/33-5

#ISOQOL

#HRQL of people w heart failure in #LMICs

https://rdcu.be/dF2sX

#SysReview

#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...

Looking for a #WeekendRead?
Quality of Life Research 04-2024
https://link.springer.com/journal/11136/volumes-and-issues/33-4
#ISOQOL

For example a #ScopingReview of biopsychosocial factors of #HRQL in individuals with traumatic brain injury
https://link.springer.com/article/10.1007/s11136-023-03511-0

Disability-free life expectancy after a #stroke in a South Korean cohort (11yr horizon)
https://rdcu.be/dCLug

Association of exacerbations in patients with #COPD with #HRQL
https://link.springer.com/article/10.1007/s11136-023-03582-z
#EQ5D

and much more 😊📰📚

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)!

#QualityTALK #ISOQOL #HRQL #NightshiftEditor

#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!🥳

#HealthEconomics #HRQL #Psychometrics

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

#HRQL #HealthEconomics #ISOQOL #ResponseBehaviour

Last week "Quality of Life Research" published 6 papers:
https://link.springer.com/journal/11136/online-first #ISOQOL

For example,

A #SysReview showing widespread use of #PreferenceBased measures in studies w Indigenous people, but little evidence on their measurement properties
https://link.springer.com/article/10.1007/s11136-023-03499-7 #EQ5D

A comparative assessment of such measures in China
https://link.springer.com/article/10.1007/s11136-023-03512-z

And the elicitation of a #ValueSet for the Swedish Capability-Adjusted Life Years instrument
https://link.springer.com/article/10.1007/s11136-023-03507-w #TTO

#HealthEconomics

Last week "Quality of Life Research" published 3 papers:
https://link.springer.com/journal/11136/online-first #ISOQOL

For example,

an analysis of responses by 198 people w ME/CFS to #AQoL & #EQ5D questions suggests lower utilities than for population norms
https://link.springer.com/article/10.1007/s11136-023-03498-8

or an analysis of subjective #WellBeing among people living with #HIV during the COVID19 pandemic
https://rdcu.be/djvIf [Link edited]
#HRQL

Last week "Quality of Life Research" published 7 papers:
https://link.springer.com/journal/11136/online-first #ISOQOL

For example,

effectiveness of verbal instruction vs video-based education for caregivers of head & neck #cancer patients
https://rdcu.be/diEFn
#India #PalliativeCare

#SysReview of psychometric quality of instruments reporting #HRQL in survivors of critical illness
https://link.springer.com/article/10.1007/s11136-023-03487-x #COSMIN

Estimating the disutility of relapse in #MultipleSclerosis
https://link.springer.com/article/10.1007/s11136-023-03486-y #EQ5D #AQoL #SF6D

Last week "Quality of Life Research" #ISOQOL published 6 papers:
https://link.springer.com/journal/11136/online-first

For example,
the use of #EyeTracking technology to investigate use of the #EQ5D
https://link.springer.com/article/10.1007/s11136-023-03488-w

the Norwegian Fatigue Characteristics and Interference Measure for #stroke survivors
https://link.springer.com/article/10.1007/s11136-023-03477-z #Rasch #Psychometrics

and social factors of health-related quality of life in older adults
https://link.springer.com/article/10.1007/s11136-023-03472-4

#HRQL

Last week "Quality of Life Research" #ISOQOL published 5 papers:
https://link.springer.com/journal/11136/online-first

For example,

after adjusting covariates, falls of elderly predicted #EQ5D outcomes
https://rdcu.be/dgpHH

finding notable differences in #HRQL at new diagnosis of advanced prostate cancer for Black and White individuals
https://rdcu.be/dgpH5

comparing latent variable & network models in #PROMIS data
https://rdcu.be/dgpH8
#Psychometrics

Last week "Quality of Life Research" #ISOQOL published 3 articles:
https://link.springer.com/journal/11136/online-first

Development & evaluation of a measure of #COVID-related psychosocial experiences in US cancer survivors
https://rdcu.be/df0NV
#Psychometrics

How do older adults receiving aged care services understand & respond to the #EQ5D?
https://link.springer.com/article/10.1007/s11136-023-03466-2
#ResidentialCare

Indications for the identification of patients with advanced #cancer who require additional supportive care
https://link.springer.com/article/10.1007/s11136-023-03460-8

#HRQL

Last week "Quality of Life Research" #ISOQOL published 10 articles:
https://link.springer.com/journal/11136/online-first

For example:
Use of a multi-component design in questionnaire development:
https://rdcu.be/dfkXK
#Psychometrics

#HRQL among people who inject drugs:
https://link.springer.com/article/10.1007/s11136-023-03459-1
#HealthEconomics #EQ5D

And an evaluation of how to capture aspects of quality of life important to #InformalCarers:
https://link.springer.com/article/10.1007/s11136-023-03459-1

Last week "Quality of Life Research" published 3 articles:

Alternative data collection methods for resource use and #HRQL (#CHU9D #EQ5d) in the context of appendicitis in children
https://link.springer.com/article/10.1007/s11136-023-03442-w
#HealthEconomics #HTA

Association btw cognitive impairment & HRQL in a sample of older Australians (HILDA survey)
https://link.springer.com/article/10.1007/s11136-023-03449-3

Evidence gap map of interventions for people living w skeletal dysplasias
https://link.springer.com/article/10.1007/s11136-023-03431-z

Online first articles:
https://link.springer.com/journal/11136/online-first
#ISOQOL

Quality of Life Research, July issue published:
https://link.springer.com/journal/11136/volumes-and-issues/32-7
#ISOQOL #HRQL

Opened by a #SysReview of instruments measuring the quality of dying and death in Asian countries:
https://rdcu.be/ddRIE
#COSMIN #EndOfLifeCare

the issue features several pieces on properties of various instruments in different contexts and versions, e.g.,

#EQ5D
https://link.springer.com/article/10.1007/s11136-023-03372-7

#EORTC https://link.springer.com/article/10.1007/s11136-023-03373-6

#PROCTCAE
https://link.springer.com/article/10.1007/s11136-023-03374-5

Last week "Quality of Life Research" #ISOQOL published 7 articles:
https://link.springer.com/journal/11136/online-first

For example:

Describing #HRQL of Māori adults in Aotearoa me Te Waipounamu w data from the NZ #EQ5D valuation study:
https://link.springer.com/article/10.1007/s11136-023-03399-w

Interviews w 35 executives of US healthcare organizations regarding
#ImplementationScience of #PROMs:
https://rdcu.be/c7045
#Feedback

What matters to residents of Australian aged care facilities pre- & mid-pandemic?
https://link.springer.com/article/10.1007/s11136-023-03387-0
#QualitativeMethods

Last week "Quality of Life Research" #ISOQOL published 6 articles:
https://link.springer.com/journal/11136/online-first

For example:

What happens if you split the #EQ5D #Depression / #Anxiety item into two?
https://link.springer.com/article/10.1007/s11136-023-03372-7
#Psychometrics
Maybe good accompaniment, bolt-ons for the EQ-5D:
https://link.springer.com/article/10.1007/s11136-022-03138-7

A qualitative study of the impacts of necrotizing soft tissue infections, highlighting the extensive impact this disease can have on survivors’ families:
https://link.springer.com/article/10.1007/s11136-023-03371-8

#HRQL