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Health-related quality of life for chronically ill children
Mary Ann Cantrell1, Michelle M Kelly
1Mary Ann Cantrell is a Professor, College of Nursing, Villanova University, Driscoll Hall 338, 800 East Lancaster Avenue, Villanova, PA. She can be reached via e-mail at mary.ann.cantrell@villanova.edu Michelle M. Kelly is an Assistant Professor, College of Nursing, Villanova University, Driscoll Hall 398, 800 Lancaster Avenue, Villanova, PA.
Insights
Health-related quality of life (HRQOL) is crucial for chronically ill children, impacting physical, psychological, and social well-being. Measuring HRQOL improves communication, satisfaction, and clinical decision-making for better pediatric health outcomes.
Area of Science:
- Pediatric Health Outcomes
- Quality of Life Research
- Chronic Illness Management
Background:
- 43% of US children live with chronic conditions, necessitating focus on their long-term well-being.
- Health-related quality of life (HRQOL) is a critical outcome for pediatric populations with chronic illnesses.
- Advances in treatment underscore the importance of measuring HRQOL as a key health status indicator.
Purpose of the Study:
- To review the significance of HRQOL as a health outcome for chronically ill children.
- To provide a historical overview and synthesis of HRQOL conceptualization and measurement in pediatrics.
- To examine current research and clinical applications of HRQOL outcome measures.
Main Methods:
- Literature review synthesizing conceptualization and measurement of pediatric HRQOL.
- Review of current research using patient-reported outcome measures (PROMs) like PROMIS®.
- Analysis of clinical applications and benefits of HRQOL outcomes research.
Main Results:
- HRQOL is a subjective, multidimensional construct encompassing physical, psychological, social, and goal attainment aspects.
- HRQOL measurement is vital for managing chronic childhood illnesses, with implications for families and healthcare systems.
- PROMIS® and similar tools offer tailored assessments for specific pediatric symptoms and health outcomes.
Conclusions:
- HRQOL measurement is essential for improving patient-provider communication and patient satisfaction.
- Utilizing HRQOL outcomes aids in identifying hidden morbidities and enhances clinical decision-making.
- Focusing on HRQOL research can lead to improved patient outcomes and better healthcare delivery for chronically ill children.
Abstract:
Approximately 43% of children in the United States (32 million) are currently living with at least 1 of 20 common chronic childhood illnesses. The most common chronic childhood illnesses are asthma, cystic fibrosis, diabetes, obesity, malnutrition, developmental disabilities, cerebral palsy, consequences of low birthweight, and mental illness. For all chronically ill pediatric populations, the outcome of health-related quality of life (HRQOL) is particularly important because many of these children have not and will not be cured, and will continue to manage their chronic illness into adulthood. Advances in biomedical science and technology continue to improve efficacy of treatments and care for chronically ill children, adolescents, and their families, which highlight the importance measurement of HRQOL as a treatment and health status outcome. The construct of HRQOL is subjective, multidimensional, dynamic, and unique to each individual. It includes aspects of physical, psychological, social function, and goal attainment. Outcomes of HRQOL now include the financial implications for these children and their families, as well as financial and organizational consequences for healthcare planning and delivery of services.This article reviews the importance of HRQOL as a health outcome for chronically ill children. A historical overview and synthesis of the conceptualization and measurement of HRQOL for the chronically ill pediatric population is provided. Current research investigations that have measured health outcomes using individual scales tailored to children's specific symptoms health outcomes, such as PROMIS®-Patient Reported Outcomes Measurement Information System-are reviewed. The clinical applications of HRQOL outcomes research include facilitation of patient-healthcare provider communication, improved patient satisfaction, identification of hidden morbidities, a positive impact on clinical decision making, and improvement of patient outcomes over time.
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