#PatientReported

International Journal of MS Care

@ijmsc.bsky.social

1 month ago

MyMS: An Interface for Patient-Reported Outcomes for Finnish Individuals With Multiple Sclerosis

"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

Jan R. Boehnke

@jrboehnke.bsky.social

2 months ago

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...

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

Karmactive

@karmactive.bsky.social

4 months ago

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...

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

Jan R. Boehnke

@jrboehnke.bsky.social

8 months ago

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...

#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

Jan R. Boehnke

@jrboehnke.bsky.social

1 year ago

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 ...

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

Jan R. Boehnke

@jrboehnke.bsky.social

6 years ago

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

Jan R. Boehnke

@jrboehnke.bsky.social

7 years ago

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

Jan R. Boehnke

@jrboehnke.bsky.social

7 years ago

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

Jan R. Boehnke

@jrboehnke.bsky.social

7 years ago

Preview of the #QLR special section in the July issue:


#qol #patientreported #psychometrics #cat #fda
#isoqol #openaccess

Jan R. Boehnke

@jrboehnke.bsky.social

7 years ago

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