P08.03.A CAREGIVERS OF ADULT NEURO-ONCOLOGICAL PATIENTS: UNMET NEEDS AND RELEVANT PROBLEMS - A PROSPECTIVE STUDY

Abstract

Abstract BACKGROUND The diagnosis of a brain tumor represents high burden for patients’ caregivers. Psychosocial screening tools for caregivers adapted to neuro-oncological tumor entities are urgently required but do not exist. To bridge this gap, we aim to develop a problem list in terms of a holistic need assessment tailored to their unmet needs of caregivers for an application in combination to the NCCN distress thermometer scale. MATERIAL AND METHODS First, items of high relevance for the caregivers were identified on basis of retrospective analyses. Second, we prospectively conducted an assessment in two centers: in the first center, caregivers filled out a questionnaire (center A), in the second center, the questionnaire was applied as qualitative interview with caregivers (center B). We performed a qualitative content analysis applying inductive/deductive categorizations of the reports. RESULTS The qualitative interviews included n=11 main questions and up to 4 subquestions focusing on changes in everyday life, relationship, social live, emotional, physical, financial, spiritual problems and support needs. A total of 47 caregivers were assessed (n=25 in center A via questionnaire, n=22 in center B via interviews) during outpatient visits. Most of the caregivers wished for psychological support (27/47, 57%), first contact with psycho-oncologists after first diagnosis (25/47, 53%) or in case of a clinical deterioration (28/47, 59%). Strategies for problem solving (26/47, 55%) and finding sources of strength (22/47, 47%) were most important regarding needed support. Changes in everyday life’ were reported by 87% of caregivers (41/47), including constraints/organization of (medical) appointments (24/47, 51%) or constant availability required for the partner (20/47, 43%). Also, 70% (33/47) put their own interests last or adapt their leisure activities. In the qualitative interviews (Center B), additional items indicating caregiver burden were identified: “dealing with psychological problems of the patient” (3/22, 16%), “different coping strategies among patient and caregiver” (4/22, 18%). Emotional problems, particularly depressive symptoms were addressed more profoundly in the qualitative interviews (“loss of interest and feelings of sadness”, 4/22, 18%). CONCLUSION The interviews reflected the unmet needs of brain tumor caregivers and allow for the targeted assessment of the specific burdens. Furthermore, we were able to gather more in-depth information per qualitative interviews.