Abstract 6056
Background
Appraisals of information needs, expectations and experiences of treatment in prostate cancer have highlighted the lack of relevant data in advanced disease. We report interview data from the EXperiences of TREatment and Quality Of Life of men with mCRPC study (EXTREQOL). It aimed to examine factors driving treatment decision-making from the perspectives of patients and healthcare professionals and gather data on the impact of treatments on quality of life (QOL).
Methods
A prospective longitudinal mixed-methods observational design was employed. This included semi-structure interviews conducted with patients and their partners, in-person or by phone, at baseline =within 14 days of starting a systemic treatment (any line) for mCRPC and after 3 months of treatment. Topics explored included experiences of treatment decisions, information provision, what assisted decision-making and how perceived benefits and harms of treatment affected patients’ and families’ lives.
Results
Thirty three men (56-89yrs) and their female partners (54-79yrs) from 15 UK centres participated. They believed treatment aimed to delay progression (>75%), improve QOL (33%), alleviate pain (≈12%) and extend life (15% -patients, 36% -partners). ≈50% made a joint treatment decision with the doctor and 39% had as long as they needed to decide. The worst symptom most frequently identified was pain (46% -patients, 33% -partners). At baseline and 3 months (50% and 67% respectively) did not need to discuss pain control, those that did received “very/fairly” useful information. At baseline fatigue, nausea/vomiting and diarrhoea were the worst anticipated or experienced side-effects (SEs). The worst SE at 3 months was fatigue, 33% experienced unexpected SEs and 52% sought help for SEs. 75% had helpful SE discussions, 85% received written information and internet searching about SEs was common (33% -patients, 55% -partners). Only 50% had opportunity to talk with a specialist nurse and 50% accessed other supportive services.
Conclusions
More help to manage pain and other symptoms is required. Dedicated clinics maybe warranted, better specialist nurse access and earlier palliative care links would help to optimise symptom control.
Clinical trial identification
Legal entity responsible for the study
Brighton & Sussex Medical School, University of Sussex.
Funding
Sanofi Aventis.
Editorial Acknowledgement
Disclosure
H. Payne: Honoraria for advisory boards, travel expenses, consultant: AstraZeneca, Astellas, Janssen, Sanofi Aventis, Takeda, Amgen, Ipsen, Ferring, Sandoz, Novartis; Work support: UCLH/UCL Comprehensive Biomedical Research Centre. M. Mason: Scientific expert: Ellipsis Pharma. All other authors have declared no conflicts of interest.
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