P15.08.B PILOTTESTING OF A PROBLEM LIST FOR CAREGIVERS OF ADULT NEUROONCOLOGICALPPATIENTS: IDENTIFYING UNMET NEEDS AND RELEVANT CHALLENGES

Abstract BACKGROUND The diagnosis of a brain tumor represents a significant psychosocial burden for patients’ caregivers. Despite this, there is a lack of psychosocial screening tools specifically adapted to the needs of caregivers in neuro-oncology. The aim of this study was to pilot test a problem list designed as a holistic needs assessment tool tailored to the specific unmet needs of caregivers, to be used alongside with the Distress Thermometer scale. MATERIAL AND METHODS We tested a self-developed preliminary problem list with caregivers of neuro-oncology patients and conducted qualitative interviews to assess its relevance and applicability. The list comprised 38 items across six domains: physical, emotional, social, practical, daily life challenges, and issues arising from the patient’s impairment. Free-text responses were allowed to identify additional needs. Inclusion criteria included being a primary caregiver, providing informed consent, and sufficient German language skills. Sample size was guided by data saturation, and interviews were analyzed using MAXQDA. RESULTS The semi-structured interviews included eight core questions addressing aspects such as the length and clarity of the problem list, emotional responses during completion, practical utility, and any missing content. A total of 24 caregivers participated (n = 13 male, n = 11 female), most being partners of the patients. The average interview duration was 15 minutes. Caregivers most frequently endorsed physical and emotional concerns, particularly “depressed mood” (15/24; 63%), “fatigue” (13/24; 54%), and “sleep problems” (13/24; 54%). Most participants (n = 15) reported no difficulties understanding the items. However, 12.5% (n = 3) found the item “changes in emotional behavior of the affected person” unclear. This item was removed, as a related and well-understood item —“changes in personality”— coveres similar content. Additional unmet needs identified included “planning of everyday life,” “loss of autonomy,” “fear of dying,” and “feeling abandoned to cope alone.” CONCLUSION The pilot study supports the feasibility and acceptability of the problem list as a caregiver-focused assessment tool. It appears to adequately capture the unmet psychosocial needs of caregivers of brain tumor patients and may enhance targeted assessment and support in clinical practice.