PurposeTo compare patient-triggered follow-up (PTFU) for curatively treated colorectal cancer against traditional outpatient follow-up (OPFU). MethodsQuestionnaires were mailed at four time points over one-year post-treatment to two prospectively-recruited cohorts: A, patients entering follow-up and receiving OPFU pre-implementation of PTFU; B, patients entering follow-up (FU) and receiving either OPFU (B1) or PTFU (B2) post-implementation of PTFU. Bi-variate tests were used to compare patient characteristics and outcomes eight months after entering follow-up (generic and cancer-specific quality of life (QoL), satisfaction). Regression analysis explored associations between follow-up model and outcomes. Resource implications and costs of models were compared.ResultsPatients in Cohort B1 were significantly more likely to have received chemotherapy (p < 0.001), radiotherapy (p < 0.05), and reported poorer QoL (p = 0.001). Having a longstanding co-morbid condition was the most important determinant of QoL (p < 0.001); model of care was not significant. Patients were satisfied with their follow-up care regardless of model. Health service costs were higher in PTFU over the first yearConclusionsPTFU is acceptable to patients with colorectal cancer and can be considered to be a realistic alternative to OPFU for clinically suitable patients. The initial costs are higher due to provision of a self-management (SM) programme and remote surveillance. Further research is needed to establish long-term outcomes and costs.Electronic supplementary materialThe online version of this article (doi:10.1007/s00520-017-3595-x) contains supplementary material, which is available to authorized users.

Objectives: To explore the supportive care needs of cancer survivors, the characteristics of patients with high levels of unmet need, changes in unmet need after treatment ends and differences in unmet needs of breast, colorectal and testicular survivors. Methods:The method used was a prospective longitudinal mailed survey. Unmet needs, measured by 25-item modified Cancer Survivors Unmet Needs survey at baseline (immediately post-treatment) and 8 months later, were analysed descriptively.Results: Of 434 breast, 186 colorectal and 75 testicular patients responding at baseline, 56.2%, 65.6% and 50.7%, respectively, had no unmet needs, the top decile having ≥10 (breast) or seven (colorectal and testicular) different needs and seven different unmet needs. The most frequently reported unmet need (all groups) was fear of cancer recurrence. Unmet needs fell significantly at 8 months for breast patients. Some patients reported new needs. Needs were lowest amongst colorectal survivors and differed between the three groups. Higher levels of unmet needs (breast and colorectal) were associated with having had chemotherapy. Conclusion:Most survivors reported few unmet needs, but a small proportion have persisting or emerging needs. Routine or regular monitoring of unmet needs is required so that healthcare professionals can deliver personalised care based on individual needs, preferences and circumstances.

The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Objectives: Harms from opioid use and opioid-related overdose death have continued to rise in Western Canada, constituting a public health emergency. While the presence of family support is essential to improving health outcomes for people who use drugs, affected family members continue to face considerable challenges in accessing timely and appropriate supports and services, both for their loved ones, and for themselves when needed. The overarching aim of our qualitative project was to employ qualitative methodology to understand family experiences with healthcare and treatment services when supporting a young person seeking treatment for use of opioids and/or other substance use.Methods: To understand the family experience of providing support for a youth or young adult who has experienced harms from opioids and other co-occurring substance use interviews (n = 17) were carried out in Alberta, Manitoba, and Saskatchewan, with adult family members (mostly mothers; 12/17) of youth and young adults who had experienced harms due to opioids and other substance use, including overdose death. Qualitative interview data was analyzed using Reflexive Thematic Analysis to distill themes.Results: We identified the following key themes from our analysis: (1) The challenges and stigma encountered when seeking care for a loved one using substances, and (2) The lack of support to address family member mental health needs. In addition to access and system navigation

Objective To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Method Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. Results The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. Conclusions The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.