Accuracy and acceptability of survivorship care plans: results of a pilot study.

Survivorship treatment summaries and care plans are increasingly incorporated into cancer care but there are limited data on their accuracy and acceptability. We have evaluated written care plans developed as part of a once-off, nurse-led survivorship consultations across four medical oncology clinics in South Australia as part of a state-wide pilot. While the accuracy of treatment summaries was high, level of detail in care plans was moderate to low, as was survivors' perception of plans' utility.

Childhood cancer survivorship: barriers and preferences.

OBJECTIVE: Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors' barriers to accessing, and preferences for survivorship care. METHODS: We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16-25 years (adolescent and young adults (AYAs)) and >25 years ('older survivors'). Participants completed questionnaires and optional interviews. RESULTS: 633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%-97%). Many (36%-58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors' prevalence of late effects increased. Of those attending a follow-up clinic, 34%-56% were satisfied with their care, compared with 14%-15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers. CONCLUSIONS: Understanding patient-reported barriers, and tailoring care to survivors' follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.