Priority recommendations for the implementation of patient-reported outcomes in clinical cancer care: a Delphi study.

PURPOSE: The aim of this study was to develop priority recommendations for the service level implementation of patient-reported outcomes (PROs) into clinical cancer care. METHODS: Development of draft guidance statements was informed by a literature review, the Knowledge to Action (KTA) implementation framework, and discussion with PRO experts and cancer survivors. A two-round modified Delphi survey with key stakeholders including cancer survivors, clinical and research experts, and Information Technology specialists was undertaken. Round 1 rated the importance of the statements and round 2 ranked statements in order of priority. RESULTS: Round 1 was completed by 70 participants with round 2 completed by 45 participants. Forty-seven statements were rated in round 2. In round 1, the highest agreement items (>90% agreement) included those that focused on the formation of strong stakeholder partnerships, ensuring ongoing communication within these partnerships, and the use of PROs for improvement and guidance in clinical care. Items ranked as the highest priorities in round 2 included assessment of current staff capabilities and service requirements, mapping of workflows and processes to enable collection, and using collected PROs to guide improved health outcomes. CONCLUSIONS: This stakeholder consultation process has identified key priorities in PRO implementation into clinical cancer care that include clinical relevance, stakeholder engagement, communication, and integration within the existing processes and capabilities. IMPLICATION FOR CANCER SURVIVORS: Routine adoption of PRO collection by clinical cancer services requires multiple implementation steps; of highest priority is strong engagement and communication with key stakeholders including cancer survivors.

Long-term unmet supportive care needs of prostate cancer survivors: 15-year follow-up from the NSW Prostate Cancer Care and Outcomes Study.

PURPOSE: To determine the prevalence, severity, and baseline associations of self-reported long-term unmet supportive care needs in a population-wide cohort of men with prostate cancer (PC), 15 years post-diagnosis. METHODS: Participants were drawn from the New South Wales (NSW) Prostate Cancer Care and Outcomes Study. Eligible men were diagnosed with PC between 2000 and 2002, aged less than 70 years at diagnosis, and completed a 15-year follow-up survey. Demographic and clinical data were collected at baseline. The validated Cancer Survivors' Unmet Needs (CaSUN) Survey was administered to assess unmet needs. RESULTS: Of 578 eligible men, 351 completed CaSUN. Mean age was 75.8 (range 59-84) with a mean follow-up time of 15.2 years post-diagnosis. Over a third of men (37.4%) reported at least one unmet need at 15 years. Most frequently reported unmet needs pertained to the comprehensive cancer care (34.1%) domain. 87.2% of participants who reported problems with sexual function reported this need as moderate/severe. Higher diagnostic prostate-specific antigen (PSA) levels (20+ ng/mL) at diagnosis were associated with future unmet needs (PSA 20+: OR = 4.80, 95% CI [1.33-17.35]). CONCLUSION: Many PC survivors continue to report unmet needs 15 years post-diagnosis. There is a pressing need for clinicians to work together to coordinate PC care, and to proactively, regularly, and openly enquire about men's sexual adjustment to PC. The needs of PC survivors could better be met with more coordinated approaches to multidisciplinary care and timely interventions and support for chronic sexual dysfunction.