Health-related quality of life (HRQOL) refers to how we perceive the impact of a specific illness, medical therapy, or health services policy on how someone participates and finds satisfaction in life’s physical, psychological and social experiences.
The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific HRQOL instrument for children (8-12 years of age) and adolescents (13-18 years of age) with congenital or acquired heart disease (HD). This inventory was designed to improve patient-centered medical treatments and outcomes. The PCQLI forms include both self-respondent and parent/proxy reporting. It was developed at the Children's Hospital of Philadelphia and tested in a 19-center, multi-national, multi-site validation study in the U.S. and England. The study confirmed the tool’s reliability, validity, generalizability and responsiveness.
The PCQLI is intended for use in both clinical and research settings. Listed below are a few of this inventory’s diagnostic, evaluative, and prognostic applications:
Clinical
- Clinical problems related to disease state, physical symptoms and psychosocial status.
- To monitor changes over time in quality of life.
- Cross-sectional and prospective clinical assessments using health-related quality of life as an outcome.
- Prioritizing problems based partially on patient and/or parent preference.
Research
- Cross-sectional and prospective HRQOL studies.
- To evaluate differences in clinically important subpopulations.
- To determine treatment protocol efficacy.
- To evaluate differences in therapeutic regimens.
- To identify morbidity factors associated with HRQOL.
Request Access to PCQLI Forms
Complete this form to request access to PCQLI forms.
Contact Us
For additional information about the PCQLI, please contact:
Jennie Wahl, Research Administrator
minnicj@ccf.org
