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Program

Sessions

Session I: Does one size actually fit all? Conceptual fuzziness of QoL/HRQoL/functioning in pediatrics

Monday, 18 July | 1:10 pm – 2:10 pm CDT

 

Description:

Many health conditions in childhood affect children from birth through to adulthood, impacting their quality of life (QoL). Any definition of QoL for children must include the family context and developmental, environmental and societal factors associated with growing up with a health condition. Some theoretical models have been developed to understand QoL, but they were not developed specifically for the pediatric population. For QoL to be accurately measured in children, pediatric QoL must first be conceptualized. In this session, we will discuss current theoretical models of QoL and health related quality of life (HRQoL) in children, the theoretical challenges of measuring QoL in children and adolescents and discuss possible solutions to overcome these challenges.

Speakers:

Bryce Reeve

Christopher Forrest

 

Session II: Measurement framework and approaches for different age ranges and conditions in pediatric populations

Monday, 18 July | 2:40 pm – 3:50 pm CDT

 

Description:

From childhood to adolescence, every child experiences changes in their roles and responsibilities and this in turn, changes the perceptions of their own functioning. This developmental change can affect the weight of the domains that make up the construct measured, or interpretation of the construct measured. This session aims to discuss measurement frameworks, response shift and factors associated with measuring/collecting QoL/HRQoL in pediatric population.

Speakers:

Christopher Forrest

Nikki Ow

Naomi Knoble

 

Session III: How to meaningfully discuss meaningful change with children: Qualitative approaches

Monday, 18 July | 4:00 pm – 5:00 pm CDT

 

Description:

The FDA is increasingly interested in patient perspectives of what level of change is important to support traditional quantitative methods of evaluating meaningful change and deriving thresholds. This has led to the emergent of qualitative methodologies to explore changes experienced by patients and the meaning of changes. In pediatric populations this throws up additional challenges: who is the best reporter? How to discuss in a way that children can understand the topic? This session will provide case-studies of different qualitative methodologies for capturing

Speakers:

Hannah Staunton

Claire Burbridge

 

Session IV: Per aspera ad astra: Advancement in measuring child health

Tuesday, 19 July | 9:10 am – 10:30 am CDT

 

Description:

Measuring health of children and adolescents has substantially progressed but remains a challenging adventure. In this session, the potentials and limitations of selected, advanced approaches to health status assessment in different pediatric populations will be presented. These novel solutions are related to alternative forms in which data are collected (e.g. using cartoon tools), what kind of data are recorded (e.g. behavioral data such as laughter), or which metrics are applied (e.g. multiple-group item response theory). Implications for interpretation and practice are discussed.

Speakers:

Holger Muehlan

 

Session V: Why do we still use adult preferences to estimate health utility for pediatric patients? Potential measurement problems and challenges

Tuesday, 19 July | 11:00 am – 12:00 pm CDT

 

Description:

Preference-based scores provide a single index in a common metric that presents an overall summary of health and HRQoL. There is a paucity of reliable and valid preference-based measures for measuring health status of children and adolescents. In the past decade, it has been a growing debate on whether it is appropriate to use adult value sets to generate preference-based scores for children and adolescents. Importantly, there is no clear guidance for valuing health and HRQoL in pediatric population.

Speakers:

J Mick Tilford

 

Session VI: Stronger together: Patient engagement and integration of PROs in pediatric clinical practice and research prioritization

Tuesday, 19 July | 1:00 pm – 2:30 pm CDT

 

Description:

This session will provide case-studies of a) engagement of children and caregivers in the co-design of an ePRO solution in clinical care in a children’s hospital in Calgary, Alberta, Canada; b) implementation of ePROs in clinical care, the KLIK in the Netherlands; c) illustrative example of the assembly of a youth panel for research prioritization and design. It is anticipated that there will be a youth partner in attendance to describe their experiences.

Speakers:

Maria Santana

Lotte Haverman

 

Summary Q&A Session

Tuesday, 19 July | 2:30 pm – 3:00 pm CDT

 

Description:

The final session will be introduced by an overview of key learnings from the symposium and identify areas for further development or consideration. Topics that have arisen will then be discussed by a panel comprising speakers selected from each of the sessions, with questions and comment from the audience encouraged.

 

Schedule of Events

Monday, 18 July 2022

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1:00 PM – 1:10 PM

Welcome & Introduction

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1:10 PM – 2:10 PM

Session I: Does one size actually fit all? Conceptual fuzziness of QoL/HRQoL/functioning in pediatrics

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2:10 PM – 2:40 PM

Coffee Break

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2:40 PM – 3:50 PM

Session II: Measurement framework and approaches for different age ranges and conditions in pediatric populations

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4:00 PM – 5:00 PM

Session III: How to meaningfully discuss meaningful change with children: Qualitative approaches

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5:00 PM – 5:30 PM

Panel Discussion

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5:30 PM – 6:30 PM

Welcome Reception

Tuesday, 19 July 2022

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8:30 AM – 9:00 AM

Breakfast

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9:00 AM – 9:10 AM

Welcome to Day 2

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9:10 AM – 10:30 AM

Session IV: Per aspera ad astra: Advancement in measuring child health

 

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10:30 AM – 11:00 AM

Coffee Break

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11:00 AM – 12:00 PM

Session V: Why do we still use adult preferences to estimate health utility for pediatric patients? Potential measurement problems and challenges

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12:00 PM – 1:00 PM

Lunch

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1:00 PM – 2:30 PM

Session VI: Stronger together: Patient engagement and integration of PROs in pediatric clinical practice and research prioritization

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2:30 PM – 3:00 PM

Summary Q&A Session

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.