scholarly journals Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands

2017 ◽  
Vol 60 (2) ◽  
pp. 173-184 ◽  
Author(s):  
Ariel E Schwartz ◽  
Jessica M Kramer ◽  
Angela L Longo
Keyword(s):  
Developmental Disabilities ◽  
Young People ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Design Features ◽  
Cognitive Demands ◽  
Patient Reported

Measuring psychological outcomes in paediatric settings: Making outcomes meaningful using client-defined perspectives

2020 ◽  
Vol 25 (3) ◽  
pp. 594-603
Author(s):  
Halina Flannery ◽  
Jenna Jacob
Keyword(s):  
Young People ◽  
Outcome Measures ◽  
Outcome Measurement ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Psychological Outcome ◽  
Chronic Health ◽  
Patient Reported

There is a growing drive to develop and implement patient-reported outcome measures within paediatric health services, particularly for young people living with chronic health conditions; however, there is little consensus on how best to do this in meaningful ways within psychological services working alongside medical teams. This reflective commentary considers some of the challenges of collecting psychological outcome measures in paediatric services and considers alternative approaches to making outcome measurement meaningful. All measures have their limitations; however, they become meaningless if they are not used in meaningful and considered ways with young people. Client-defined outcome measurement, such as goal-based outcome measures, alongside other types of measurement, can capture outcomes of meaning to young people living with chronic health conditions, and can enable them to feed into a shared decision-making process.

scholarly journals Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

RMD Open ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. e001517
Author(s):  
Erika Mosor ◽  
Paul Studenic ◽  
Alessia Alunno ◽  
Ivan Padjen ◽  
Wendy Olsder ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Young People ◽  
Qualitative Study ◽  
Focus Groups ◽  
Outcome Measures ◽  
Inflammatory Arthritis ◽  
Positive Attitude ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

IntroductionAlthough patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.MethodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.ResultsFifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.ConclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.

Impact of Depression on Patient-Reported Outcome Measures After Lumbar Spine Decompression

Spine ◽  
2018 ◽  
Vol 43 (6) ◽  
pp. 434-439 ◽  
Author(s):  
Robert K. Merrill ◽  
Lukas P. Zebala ◽  
Colleen Peters ◽  
Sheeraz A. Qureshi ◽  
Steven J. McAnany
Keyword(s):  
Lumbar Spine ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported
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