Evaluating the reliability and validity of a new pediatric palliative care needs assessment tool

Abstract

Objectives * Describe categories of need faced by parents and patients in pediatric palliative care. * Describe unmet needs faced by parents and patients in pediatric palliative care. * Describe potential uses for a needs assessment tool in the delivery of pediatric palliative care. Original Research Background. Despite the challenges faced by children with life-limiting conditions and their families, there is no validated needs assessment tool for use in pediatric palliative care. To address this gap, we developed the Parent/Child Needs Tool (PC Needs), which assesses physical, psychological, social, and healthcare team needs. Research Objectives. Test the reliability and validity of PC needs, and identify unmet needs in pediatric palliative care. Methods. Four community-based organizations in Chicago, IL and Rochester, NY distributed surveys to parents of pediatric palliative care patients. The surveys included three sections: parent demographics; the PC Needs (22 items rating degree of need from 1e10 and scored by adding responses); and the World Health Organization Quality of Life (WHOQOL-BREF) tool (26 items measuring four domains: physical, psychological, social and environmental). We assessed reliability using Cronbach’s alpha and validity by calculating correlations between the PC Needs score and WHOQOL-BREF domains. Results. Surveys were collected from 82 parents, ages 26 to 64 (Mean= 42). Parents were: 73% female and 89% white, 5% African American and 6% Other. The mean PC Needs score was 81.3 (range= 25-139, SD=26.4). The lowest rated (most fulfilled) needs were palliative care team respect for child and parent and parent-child relationship. The highest rated needs were impact of the child’s illness on the family; managing physical problems; and financial needs. Reliability (Cronbach’s alpha) was 0.83. Correlations between the PC Needs score and the WHOQOL-BREF domains were in the predicted direction (i.e., greater need=lower quality of life): Physical r=-0.44; Psychological r=-0.55; Social r=-0.59; Environmental r=-0.45 (all p<.001). Conclusion. The PC Needs Tool is a reliable and valid needs assessment measure for pediatric palliative care. Unmet needs reported by parents included impact on the family, physical problems, and finances. Implications for Research, Policy, and Practice. Future work will assess the use of the PC Needs in clinical care.