Partnering with families to validate questionnaires assessing unmet needs of children, adolescents, and parents/caregivers at the end of cancer treatment

Abstract

<p>Transitioning off cancer treatment is a momentous occasion for pediatric patients and their families, but also brings anxiety and fear, suggesting that there are unmet needs/gaps in services provided at the end of treament. &nbsp;After examining the process of transitioning off cancer treatment, the hematology/oncology nursing research workforce group wished to determine if the current practices at our institution are meeting the needs of our patients and their parents/caregivers.</p> <p>The experiences and needs of pediatric cancer patients and their parents/caregivers at the end of treatment, as reported in the literature, are predominantly descriptive studies with small sample sizes, restricting generalizability of results. Additionally, there is limited research evaluating existing programs and services at the end of treament. The "Coming off Treatment" questionnaire (COT) (Nagel, et al., 2002) was developed to assess issues important to parents of children completing cancer therpy. Although this questionnaire has been utilized in two studies to date, no psychometric information based on the COT has been published.</p> <p>The purpose of this study was to adapt the COT into End of Treatment (EOT) questionnaires for both children with cancer and their parent/caregivers, and to validate these EOT questionnaires.</p>