Prostate cancer survivorship priorities for men and their partners: Delphi consensus from a nurse specialist cohort

Abstract

Aims & objectives To describe the prostate cancer survivorship experience and priorities from the perspective of prostate cancer specialist nurses. Background Specialist nurses are providing long‐term survivorship care to men and their partners however, few prostate cancer survivorship interventions are effective and priorities for nurse‐led survivorship care are poorly understood. Design A three‐round modified Delphi approach. Methods The study was conducted between 1 December 2018 and 28 February 2019 to develop a consensus view from an expert nurse cohort (43 prostate cancer specialist nurses: 90% response). First, participants described men's prostate cancer survivorship experience and priorities for improving care for men and partners. In subsequent rounds, participants identified key descriptors of the survivorship experience; rated priorities for importance and feasibility; and identified a top priority action for men and for partners. Thematic analysis and descriptive statistics were applied. Guidelines for Reporting Reliability and Agreement Studies informed the conduct of the study. Results Prostate cancer specialist nurses characterised the prostate cancer survivorship experience of men as under‐resourced, disjointed and distressing. In all, 11 survivorship priorities for men and three for partners were identified within five broad areas: capacity building; care coordination; physical and psychosocial care; community awareness and early detection; and palliative care. However, feasibility for individual items was frequently described as low. Conclusion Internationally, prostate cancer survivorship care for men and their partners requires urgent action to meet future need and address gaps in capacity and care coordination. Low feasibility of survivorship priorities may reflect translational challenges related to capacity. Prostate cancer survivorship care guidelines connected to practice priorities are urgently needed. Relevance to clinical practice These findings address key gaps in the evidence for developing national nurse‐led prostate cancer survivorship priorities. These priorities can be used to inform survivorship guidelines including nursing care for men with prostate cancer and their partners.

Prostate cancer survivorship essentials framework: guidelines for practitioners

“…Consistent with our previous research, this expert panel described the current experience of prostate cancer survivorship in Australia as medically focused, not well coordinated and challenging, exacerbating the difficulty of treatment side effects and leading to unmet needs and anxiety [14,21]. The burden of prostate cancer in the individual has been well described, with the chronic nature and prolonged natural history of this disease, along with accumulated toxicities from existing and emerging treatments, exacerbating the need for survivorship guidelines [12].…”

“…Shared management extends to respecting a patient’s wishes to engage in decision‐making around care to the extent they prefer, involves acknowledging and supporting the role family members and carers play, and requires access to patient records. Once shared and informed management decisions are made, these decisions should be supported by effective care coordination, with primary care providers and prostate cancer specialist nurses playing a central role as navigators [ 21 ].…”

“…The Delphi technique is a widely used method that seeks to forecast and elicit informed expert opinion and consensus in a structured and iterative approach. In health, the Delphi method has been used to develop the following: health system performance, prescribing and disease indicators [ 19 ]; clinical models of care [ 20 , 21 ]; patient outcome measure sets [ 22 ]; and cancer survivorship classifications [ 23 ]. The policy Delphi [ 24 ] is appropriate for complex health policy issues and uses panel participants with a range of potentially different perspectives who are well informed and have a vested interest in the issue at hand, and specifically considers feasibility as well as importance [ 20 , 25 ].…”

Experiences of female partners of prostate cancer survivors: A systematic review and thematic synthesis

“…There are growing calls to increase the involvement of clinicians in addressing the needs of female partners through conducting regular screening and assessment to identify partners at risk of distress, and referral to appropriate psychosocial supports, as part of PCa survivorship care (Hyde et al., 2018). Prostate Cancer Specialist Nurses (PCSNs) are uniquely placed to play an important role in coordinating survivorship care for these women (Ralph et al., 2020). Workforce training that includes education around the psychosocial needs of female partners may help support PCSNs to bring female partners in from the periphery of the health system.…”

Nursing and Allied Health Research Priorities in the Care of Patients With Thoracic Malignancies: An International Cross-Sectional Survey

“…A nurse-patient collaboration project supported by the United Kingdom Oncology Nursing Society (n = 50 nurses and 18 patients) showed a high level of consensus on research related to prevention, screening, early diagnosis, and psychological care across the cancer trajectory (3). Research needs and priorities have been identified in the area of breast cancer (4), kidney research (5), expert panels, or caregivers (6), and prostate cancer survivorship (7) through Delphi consensus. In lung cancer care there is only a small-scale (n = 42) survey of health professionals in Australia, highlighting that reducing the time from presentation of symptoms to diagnosis and treatment was the highest priority while other priorities included timely referral to palliative care or unmet needs in vulnerable populations (8).…”