Health-related quality of life issues in adolescents and young adults with cancer: Discrepancies with the perceptions of health care professionals

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more prob-lems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diag-nosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treat-ment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care

Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors through Community-Partnered Participatory Research.

BackgroundMinority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care.ObjectiveThis study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care.MethodsResearch team participants included the community organization and NCI cancer center directors, a research coordinator, a community liaison, and cross-training program interns. Through use of Jones's theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data.ConclusionsCPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge

Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire

Purpose The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales. Methods We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales. Results Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items. Conclusions The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study. Implications for Cancer Survivors The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors