Background Cancer of unknown primary (CUP) is associated with clinical uncertainty, limited treatment options and a short prognosis. Guidelines recognise that patients need the input of dedicated multidisciplinary teams. Yet there is little evidence about their care needs to guide service configuration.
Aim To identify the supportive care needs of patients attending a CUP outpatient clinic as part of service evaluation.
Methods Between January and July 2016 patients attending clinic were offered an Integrated Palliative Care Outcome Scale(IPOS) as a holistic needs assessment. Patients stated their worse problems in free text and scored concerns on a 0–4 scale of increasing severity.
Results Of 57 patients 37 (65%) completed an IPOS. Tissue confirmation of malignancy occurred in 34 (92%) patients. A primary was identified in 14 (38%), and 20 (54%) retained a CUP diagnosis despite histology. Overall 13 (35%) were for best supportive care, ten of whom kept a CUP diagnosis. Chemotherapy was given to 16 (43%) patients. It was delivered to treat CUP in ten patients and six received chemotherapy after identification of a primary. Problems with the highest mean scores were: family anxiety (2.7), patient anxiety (1.9), weakness (1.8), not being at peace and poor mobility (1.7). Family anxiety and patient anxiety were present most of the time to always for 24 (73%) and 13 (39%) patients respectively. Weakness was severe to over-whelming for 12 (38%) patients. Thirty patients described their worse problems. Weakness/fatigue was identified by 12 (40%), concern about the future by 11 (36%), pain by 10 (33%) and distress by 7 (23%).
Discussion CUP services need to be configured to address family and patient anxiety and the weakness/fatigue associated with metastatic cancer. This cohort represents patients who are fit enough to undergo outpatient workup and biopsy. It may not reflect the needs of frailer patients who are not candidates for systemic cancer therapy.
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