Abstract
BACKGROUND: In the fast-expanding field of life-prolonging-treatment of metastatic, castration-resistant prostate cancer, treatment decision-making is very complex - both for patients and healthcare professionals since there is no "one size that fits all" in choosing treatment in this phase. Little research has been conducted about men's experiences of treatment decision-making in this advanced, incurable, phase. Hence, this study aimed to describe men's experiences of decision-making in life-prolonging treatments of metastatic castration-resistant prostate cancer. METHODS: Seventeen men were recruited from four oncology clinics in Sweden and interviewed at baseline. Qualitative interviews (n = 31) were conducted over two years, the timepoints for subsequent interviews (10 men were interviewed twice or more) adhered to when each man switched or terminated life-prolonging treatment. Data was analysed with qualitative content analysis. RESULTS: Initially, the men were adamant about proceeding with treatment. As their illness continued to progress, they gradually turned their focus more towards their well-being. They wished for continuity regarding treating physicians and constantly being assigned new physicians compromised the quality of care and complicated decision-making. In their decision-making, the men adapted their own approach to the approach taken by their physician, even if it was not an approach they had originally preferred. They wished for their role preferences to be respected. Most men had made treatment decisions collaboratively with their physician, but some described having taken on a more, or less, driving role in decision-making than they really wished for. Navigating healthcare was perceived as difficult and for some it thus felt necessary to pursue and coordinate their own care by e.g. using personal connections or contacting clinics ahead of referral. A part of treatment decision-making was forming a basis for a decision, in which the need for personalized information (quality, quantity and timing) came forth as important. CONCLUSIONS: When diagnosed with metastatic castration-resistant prostate cancer, men's preferences for their decision-making role, and perspectives on the treatment outcome need to be continuously addressed throughout their disease course. Improved continuity of care and a more personalised care approach should meet these patients' wishes and needs in this phase. TRIAL REGISTRATION: Clinical trial number: Not applicable.