#PatientReported
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jrboehnke.bsky.social
Cross-sectionally it is difficult to separate these 2 dimensions empirically (discussed from a dynamic perspective here: www.pnas.org/doi/full/10....), so it is interesting that the item banks are assumed to be independent, this is not tested here.

#MIRT #PatientReported
Lack of group-to-individual generalizability is a threat to human subjects research | PNAS
Only for ergodic processes will inferences based on group-level data generalize to individual experience or behavior. Because human social and psyc...
pnas.org
August 24, 2026 at 7:58 PM
jrboehnke.bsky.social
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/10....

#HRQL #JPRO #PatientCentered #PatientReported #ePRO
Mapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems - Journal of Patient-Reported Outcomes
Background 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 ...
jpro.springeropen.com
March 10, 2025 at 5:32 PM
ijmsc.bsky.social
"MyMS offers a great opportunity to increase the use of #PROMs because it is easily available to individuals as well as health care professionals."
doi.org/10.7224/1537...
#MultipleSclerosis #app #Finland #PatientReported
MyMS: An Interface for Patient-Reported Outcomes for Finnish Individuals With Multiple Sclerosis
doi.org
February 11, 2026 at 2:34 PM
jrboehnke.bsky.social
Publication proposing a 'Comprehensibility Continuum' method to demonstrate #PatientReported outcome measure comprehensibility systematically and consistently from interview data:
link.springer.com/article/10.1...

#PatientCentered #Psychometrics #ScaleDevelopment #HRQOL
The comprehensibility continuum: a novel method for analysing comprehensibility of patient reported outcome measures - Quality of Life Research
Purpose Evidence of comprehensibility is frequently required during the development of patient reported outcome measures (PROMs); the respondent’s interpretation of PROM items needs to align with inte...
link.springer.com
December 18, 2025 at 2:05 PM
jrboehnke.bsky.social
#PersonCentred care refers to care that is respectful of and responsive to personal experiences, needs and values of service users.

How to evaluate such care? And is there a place for #PatientReported outcomes?
www.frontiersin.org/journals/hea...

#PatientCentered #HRQOL
@profbrendan.bsky.social
Frontiers | Time is now to consider how we evaluate person-centred care—the role of patient-reported outcomes
Person-centred care refers to health care that is respectful of and responsive to personal experiences, preferences, needs, goals and values of service users...
www.frontiersin.org
June 16, 2025 at 5:23 PM
jrboehnke.bsky.social
Interesting view by @KevinWeinfurt on the differentiation btw noticeable vs. valuable change in #patientreported outcomes:

Proposed definitions once again question the appropriateness of group-based measures for individual decisions.

#patientcentered
November 17, 2024 at 12:28 PM
jrboehnke.bsky.social
New #NAMPerspectives discussion paper:

Focusses on the great opportunities in which #patientreported outcomes could also play a key role.
It nevertheless ignores complexities of prediction.

#weaponsofmathdestruction
#PRO #QOL #HRQOL #inequality
November 17, 2024 at 12:06 PM
jrboehnke.bsky.social
New issue of #QLR sent off to print, for example with this #sysreview on the quality of simulation studies to develop #bestpractice for the analysis of #longitudinal #PRO data:


#patientreported #QOL
#longitudinal #simulation
#isoqol
November 17, 2024 at 12:05 PM
jrboehnke.bsky.social
Preview of the #QLR special section in the July issue:

#qol #patientreported #psychometrics #cat #fda
#isoqol #openaccess
November 17, 2024 at 11:59 AM
jrboehnke.bsky.social
Service user perspective on #patientreported outcomes:
"the items should be relevant and meaningful, unambiguous, easy to answer particularly when distressed, do not cause further upset, and be non-judgemental."

#reqol #qol #isoqol #qlr #openaccess
November 17, 2024 at 11:58 AM
acr-journals.bsky.social
Using data from adults w/ early SSc in CONQUER registry, this study found discordance between patient & physician global assessments in over half of cases. Patients prioritized pain, phys function & disease-related symptoms, while physicians prioritized clinical measures
AC&R
doi.org/10.1002/acr....
Correlations of global assessments with clinical and patient-reported outcomes For each variable, plot shows the observed correlation between the PhGA and the variable (x-axis) compared to the observed correlation between the PtGA and the variable (y-axis) using all available timepoints. Patientreported variables are indicated with purple text. Variables with positive correlations that are above the line are more correlated with the PtGA while variables with positive correlations that are below the line are more correlated with the PhGA. The opposite is true for variables with negative correlations. Abbreviations: DLCO, diffusing capacity of the lung for carbon monoxide; FEV1, forced expiratory volume in 1 second; FVC, forced vital capacity; mRSS, modified Rodnan Skin Score; SHAQ, Scleroderma Health Assessment Questionnaire; PROMIS, Patient-Reported Outcome Measures Information System
April 21, 2026 at 8:51 PM
karmactive.bsky.social
FuRST 2.0 tracks subtle HD changes; FOCUS-HD takes ~20 mins.

More here ⤵️
www.karmactive.com/huntingtons-...

Follow @karmactive.bsky.social

#HuntingtonsDisease #PatientReported #GeneTherapy
Huntington’s: FuRST 2.0 targets early function; AMT-130’s 3-year percent is inside - Karmactive
FuRST 2.0 puts patient reports at the center of early HD tracking, while AMT-130 posts a multi-year efficacy percent that’s driving attention—check the exact number, the 20-minute step, and what’s nex...
www.karmactive.com
October 15, 2025 at 11:43 PM