What matters to patients: Parental and caregiver opinions on International Consortium for Health Outcomes Measurements overall health outcomes for children in Singapore

Abstract

Background: Health in children is multifaceted. More than just the absence of disease, good child health also comprises psychological well-being and social functioning. In paediatrics, optimal health care is a partnership between caregivers and doctors. Value-based medicine strengthens this partnership. Monitoring and tracking these patient-reported outcomes using validated measurement tools in a life-course manner helps us to understand and ultimately improve overall child health better. Objectives: This study aimed to assess parental opinions in Singapore on recommended outcome measures and approach recommended by the International Consortium for Health Outcomes Measurements (ICHOM) Overall Pediatric Health (OPH) working group. Methods: An international working group comprising 25 experts in paediatric health was formed under the auspices of ICHOM. Through a series of literature reviews, patient focus groups and open review periods, a set of health outcomes and case-mix variables was proposed, with the aim of improving paediatric care globally. Parents and caregivers were invited to participate in this survey from around the world, including from the USA, UK, Colombia and Singapore. The survey covered domains that were included in the ICHOM OPH Standard Set. An international anonymised online patient validation survey tool online survey was initiated to evaluate caregiver opinions of these proposed ICHOM OPH outcomes, and this was conducted from November 2019 to January 2020. Singapore participated in this caregiver survey on overall paediatric health outcomes. Of the 270 respondents in this ICHOM OPH consumer international open review online survey, 160 were from Singapore. We report here a cross-sectional study with data from the Singapore group of respondents. Results: Of the 160 responses from Singapore, 73.8% had no more than two children, and 38.8% of caregivers had children between 0 and 5 years old. In general, 76.9% of caregivers were satisfied with the health care that they received, and 60% of caregivers had had between one and four health-care appointments in the last 12 months. Assessment was done on a scale of 1 to 9, with importance defined as a score of ⩾7. All outcome measures were ranked to be important, with an overall mean score of 7.9 on a scale ranging from 1 to 9. Development was assessed as being the most important ( M=8.34±0.93), and sexual health was assessed as being the least important ( M=7.09±1.71). Almost all respondents felt that the list of ICHOM-recommended outcomes proposed was complete. Parents and caregivers in Singapore placed development and mental health as the most important across all age groups surveyed. They felt that the framework provided by the ICHOM OPH working group was adequate in addressing their concerns. Most parents and caregivers were satisfied with the health care they had received. Conclusion: Child health is a continuum that requires longitudinal attention from both the family and the clinician, and should take a life-course approach, utilising validated measurement tools to monitor and track key parameters. Parents and caregivers in Singapore place high importance on their child’s development and mental functioning. While there has been much community effort on development and mental functioning in children, more can be done in these two areas and to increase the emphasis and awareness on sex education both within the home and in schools. A framework for evaluating children during follow-up clinic visits would be helpful in continuing longitudinal care of children to provide holistic care and to improve adult health in the long term, guided by the framework set down by the ICHOM OPH standard set. As we recognise and embrace the importance not just of health care but the health of the next generation, we will need to use validated measurement tools to monitor and track these importance parameters in the journey of our children, so that we can identify and improve these outcomes in a timely manner.