Health status and health-related quality of life in a pediatric palliative care program

Related Experiment Videos

Caprice Knapp1, Vanessa Madden, Dennis Revicki

  • 1Department of Health Outcomes and Policy, University of Florida, Gainesville, FL 32610, USA. caprice1@ufl.edu

Journal of Palliative Medicine
|June 13, 2012
PubMed

Insights

Children with life-threatening illnesses experience significant health challenges and impaired quality of life. Integrated pediatric palliative care programs aim to address these needs, but require more provider participation.

Area of Science:

  • Pediatric Palliative Care
  • Health Services Research
  • Quality of Life Studies

Background:

  • Children with life-threatening illnesses have distinct physical and psychosocial needs.
  • Integrated pediatric palliative care programs address these needs from diagnosis through end-of-life, alongside curative treatments.
  • Understanding variations in these needs is crucial for program development.

Purpose of the Study:

  • To assess the health status and health-related quality of life (HRQOL) of children in an integrated pediatric palliative care program.
  • To identify specific areas of impairment and functioning in this patient population.

Main Methods:

  • A telephone survey was administered to 98 parents of children in a Florida-based integrated pediatric palliative care program.
  • The Health Utilities Index (HUI) system was utilized to evaluate health status and HRQOL.

Main Results:

  • Children exhibited greatest impairment in self-care, mobility, ambulation, and cognition.
  • Least impairment was observed in emotion and hearing/emotional functioning.
  • Mean overall HUI2 and HUI3 utility scores were 0.37 and 0.15, respectively, indicating significant morbidity.

Conclusions:

  • Children in this integrated palliative care sample showed high morbidity and severely impaired HRQOL compared to other pediatric health studies.
  • Significant variability in health states and needs exists within this population.
  • Findings can inform strategies to increase provider engagement in integrated pediatric palliative care.
Abstract

Related Concept Videos

Continuing Care01:25

Continuing Care

Continuing care describes the variety of health, personal, and social services provided over a prolonged period. The need for continuing care is increasing because people are living longer. Many people do not have families or others to care for them. Continuing care is mainly for patients who are disabled, functionally dependent, or suffering from a terminal disease. It is available within institutional settings or in homes. Examples include nursing centers or facilities, assisted living,...
Restorative Care01:19

Restorative Care

Restorative care is provided once a patient has been discharged from a healthcare facility and requires additional services. The additional services include home care, rehabilitation programs, and extended care. Restorative care centers help the patient regain their previous level of functioning or acquire a new level of functioning due to the incapacitating effects of a disease or a disability. It aims to assist patients in enhancing their quality of life by encouraging independence,...
Documentation in Long-Term and Home Healthcare Setting01:29

Documentation in Long-Term and Home Healthcare Setting

Documentation in long-term care facilities and home healthcare settings is crucial for ensuring continuous, coordinated, and comprehensive care for patients. Each setting has its specific documentation processes and tools:
Long-Term Care Facilities
Ethical Issues01:27

Ethical Issues

Nurses are essential in patient care, upholding the ethical principles of their profession and effectively navigating ethical dilemmas. Neglecting ethical issues can lead to inadequate patient care, compromised therapeutic relationships, and moral distress among healthcare workers.
Ethical Concerns in Healthcare:
Pharmacokinetics in Pediatric Patients: Drug Metabolism01:24

Pharmacokinetics in Pediatric Patients: Drug Metabolism

In pediatric care, understanding the nuances of hepatic drug metabolism is crucial, as it significantly differs from that of adults. This divergence is primarily due to the developmental stage of drug-metabolizing enzymes, which affects how medications are processed in the body. In neonates, for instance, the activity of Phase I enzymes—critical for the initial breakdown of drugs—is markedly reduced, functioning at just 20–40% of the levels seen in adults. This reduction poses a challenge in...
Pharmacokinetics in Pediatric Patients: Overview and Drug Absorption01:23

Pharmacokinetics in Pediatric Patients: Overview and Drug Absorption

Understanding the physiological differences in the pediatric population is crucial for effective pharmacotherapy. Neonates, infants, and children exhibit significant variations in gastric pH, gastric emptying time, intestinal transit time, and biliary function. These variations profoundly affect oral drug absorption, necessitating a nuanced approach to pediatric dosing.Neonates present with a unique physiological profile, having a gastric pH greater than 4 and faster and more irregular gastric...