International Society for Quality of Life Research
International Society for Quality of Life Research

Child Health Special Interest Group

Who are the members?

The Child Health Special Interest Group (CH-SIG) members are a diverse group of researchers who share a common interest in the quality of life of children. We are open to new and interesting ideas and research to move the field of children’s QoL forward.

Our aims are to:

  • create a critical mass with which to tackle key methodological challenges collectively
  • provide educational material, in the form of webinars, roundtables, etc.
  • stimulate excellent child health-related quality of life research
  • foster improvements in child health and across the transition to early adulthood
  • increase awareness among the general ISOQOL membership of the importance of child health

We provide a structure for networking by:

  • connecting researchers with similar interests to strengthen our collective knowledge
  • sharing experiences, research, and publications
  • facilitating discussions that advance research and application
  • remaining current on issues of interest in the field
  • supporting the development of trainees

Our research includes:

  • developing new avenues/methods for child-reported outcomes
  • exploring opportunities to augment self-report with observational methods for those not able to provide self-report
  • maximizing the value of data from multiple perspectives
  • adapting instruments for respondents with low literacy, visual, cognitive and other functional challenges
  • assessing the long term effects of a variety of health strategies
  • investigating mechanisms to assess change over time across the developmental trajectory
  • determining meaningfulness of change and response shift
  • establishing associations between scores from multiple instruments (i.e., cross walks)

Communication and Information Sharing

We encourage active communication between members.

  • Connect with other Child Health researchers using the ISOQOL Membership Directory.
  • Review the Quality of Life Quarterly, ISOQOL's quarterly newsletter, to keep up to date.
  • Consider the Child Health Teamwork and ISOQOL LinkedIn as a way to connect with fellow SIG members.
  • Contact one of the Child Health SIG leaders listed below for more information.

Current Activities

Leadership

Nalin Payakachat, Co-Chair
Nalin Payakachat is an Associate Professor with tenure in the Division of Pharmaceutical Evaluation and Policy, College of Pharmacy, University of Arkansas for Medical Sciences (UAMS). Nalin has been an ISOQOL member since 2009 and an associate editor for the journal Quality of Life Research since 2016. Nalin’s research involves selecting appropriate PRO measures for specific populations, validating existing PRO measures, and exploring family and caregiver spillover effects. Her work on child health focuses on measuring quality of life of children with chronic conditions (such as autism, craniofacial malformation, and developmental disabilities) and also how such chronic conditions impact the health of parents. As a PRO measure may have different sensitivity/responsiveness to detect changes in a population that is different from the one for which it was developed and validated, Nalin is interested to test which PRO instruments work in child health. Nalin also developed a PRO course for graduate students at UAMS. Her PRO course has been offered since 2009.

Jeanne Landgraf, Co-Chair
Jeanne Landgraf has been actively involved in the development of child PRO’s for almost 30 years with research experience at Dartmouth Medical School/Dept.of Community and Family Medicine and The Health Institute/Tufts New England Medical Center. She is the founding scientific officer at HealthActCHQ in Boston, MA USA. Ms. Landgraf has instructed at the Harvard School of Public Health and served as associate editor for Quality of Life Research for 10 years. Jeanne’s background is in ethnography/discourse analysis, language acquisition, questionnaire development and applied outcomes and benchmarking at the physician practice level. She is the principal developer of the Child Health Questionnaire (CHQ) and the Infant Toddler Quality of Life Questionnaire (ITQOL) of which there are more than 353 language versions. She has also developed PRO child surveys for ADHD/ADD, enuresis, neonatology, asthma/allergy and patient satisfaction. Her current interest is in the exploration and integration of novel approaches for measuring and eliciting PRO data from the very young, their families and those with special needs.

Robert Arbuckle, Co-Chair
Rob Arbuckle leads a team of over 35 Patient-Centered Outcomes researchers at Adelphi Values in the UK and has been involved in the development of clinical outcome assessments (COA) since 2002. Rob provides strategic input and direction on projects focused on the selection, development, validation and implementation of all types of Clinical Outcome Assessments (COA) – including Patient-Reported Outcomes (PRO), Clinician-Reported Outcomes (ClinRO) and Observer-Reported Outcomes (ObsRO). Rob has developed measurs in a wide variety of health conditions. Rob has a particular interest in developing PRO and ObsRO assessments for use is pediatric populations and also has extensive experience of developing and testing measures in rare disease populations. Rob has extensive experience of overseeing all types of PRO/COA development research and measurement strategy including literature reviewing, concept elicitation and cognitive interviews, qualitative exit interviews, eCOA development/migration, psychometric evaluation studies, and preparing regulatory submissions. Rob has authored numerous manuscripts and poster presentations focused on development, validation and use of endpoints. He is a reviewer for Quality of Life Research and Value in Health and has frequently presented workshops and presentations on PROs at scientific meetings. Rob has an MA in Psychology from Edinburgh University and an MSc in Applied Psychology from Manchester University.

Past Leadership

Katherine Bevans, PhD
Anne-Catherine Haller, Dipl.Psych
Anne Riley, PhD
Ulrike Ravens-Sieberer, MPH
Nancy Young, PhD

INTERNATIONAL SOCIETY FOR QUALITY OF LIFE RESEARCH
555 East Wells Street, Suite 1100, Milwaukee, WI USA 53202
Phone: +1 (414) 918-9797; Fax: +1 (414) 276-3349
Email: info@isoqol.org

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DISCLAIMER
Throughout the website, ISOQOL provides outside resources that may provide assistance to people interested in health-related quality of life and its assessment. It is recommended that readers conduct their own evaluation of the information outside of ISOQOL activities.

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