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Published on: February 16, 2011
Exploring the Use of Pictorial Approaches in the Development of Paediatric Patient-Reported Outcome Instruments: A
Christine Mpundu-Kaambwa1, Norma B Bulamu2, Lauren Lines3
1Health and Social Care Economics Group, Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Sturt Road, Bedford Park, Adelaide, SA, 5042, Australia. christine.mpundu-kaambwa@flinders.edu.au.
Insights
Pictorial patient-reported outcome measures (PROMs) offer a child-friendly way for children to report their health-related quality of life (HRQoL). These visual tools improve self-reporting for children who struggle with text-based measures.
Area of Science:
- Pediatric Health Outcomes Research
- Health Psychology
- Measurement Science
Background:
- Text-based patient-reported outcome measures (PROMs) can be challenging for children, especially those with developmental delays or chronic illnesses.
- Pictorial PROMs, utilizing visual elements, present a viable alternative for assessing health-related quality of life (HRQoL) in pediatric populations.
- This review addresses the need for accessible HRQoL assessment tools for children.
Purpose of the Study:
- To systematically identify and describe pediatric PROMs that incorporate pictorial elements.
- To evaluate the development methods and characteristics of these pictorial PROMs.
- To provide insights into effective tools for children's HRQoL self-reporting.
Main Methods:
- Systematic literature review following PRISMA guidelines.
- Searched seven electronic databases from inception to March 1, 2022, with no country restrictions for English-language studies.
- Evaluated identified PROMs against ISPOR good practice guidelines for development and context.
Main Results:
- Identified 22 pediatric pictorial PROMs (28 versions), primarily developed in the USA and UK for ages 3-18.
- Common response options included Likert scales with pictorial anchors (e.g., happy-sad faces) in 54% of PROMs.
- Child participation in development was noted in 46% of PROMs, with interviews being the most common development method (61%).
Conclusions:
- Pediatric pictorial PROMs are effective, child-friendly tools for assessing HRQoL in children facing challenges with text-based measures.
- Evidence suggests pictorial PROMs enhance self-reporting and measurement properties compared to text-only versions.
- Further research is recommended for developing and validating pictorial PROMs, emphasizing co-design with children from the outset.
Introduction:
Children may find self-reporting health-related quality of life (HRQoL) using patient-reported outcome measures (PROMs) presented in text-based formats difficult, particularly younger children and children with developmental delays or chronic illness. In such cases, pictorial PROMs (where pictorial representations are used alongside or to replace text) may offer a valid alternative.
Aim:
This systematic literature review focused on identifying and describing paediatric PROMs that incorporate pictorial approaches, providing children with more effective means to express their HRQoL.
Methods:
Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven electronic databases were searched from inception to 1 March 2022. There were no country restrictions applied to the search; all English-language studies were considered for inclusion in the review. Characteristics and development methods of the identified pictorial PROMs were evaluated against context-specific good practice guidelines published by The Professional Society for Health Economics and Outcomes Research (ISPOR).
Results:
A total of 22 paediatric pictorial PROMs, comprising 28 unique versions, were identified. These PROMs were predominantly developed in the USA and the UK, targeting children aged 3-18 years. Likert scales with pictorial anchors, particularly happy-sad faces, were commonly used for response options, appearing in 15 (54%) of the PROMs. Various graphic methods, such as happy-sad faces, cartoons, and thermometers, were adapted to specific content domains. These PROMs covered a wide range of domains, including physical and emotional health and social functioning. Emphasis was placed on content validity, including active child participation in developing pictorial elements. Notably, children's participation was sought during the development of the pictorial elements for 13 (46%) of the PROMs. Various development methods were employed, with 43% of paediatric PROMs using literature reviews, 43% using focus groups, and 32% involving expert consultation. Interviews emerged as the primary method, being employed in 61% of the studies. Additionally, three measures specifically addressed cross-cultural considerations.
Conclusion:
Paediatric pictorial PROMs offer child-friendly tools for assessing HRQoL for application with children who find reading and understanding text-based PROMs challenging. There is some evidence that pictorial PROMs facilitate self-report in this population and improve measurement properties compared to text-only PROMs. Further research is needed to develop, validate, and test paediatric pictorial PROMs, with an emphasis on including children from the inception in the co-design process.
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