Telephone-based supportive care in cancer and other chronic disease: distress screening and management

Background: Distress screening and management has the potential to reduce the burden of life-limiting chronic diseases such as cancer, and yet remains poorly implemented. This thesis seeks to provide evidence of patients’ and caregivers’ experiences of distress screening and management via telephone in health service and community-based settings. Methods: A systematic literature review of quantitative studies explored the occurrence of assessment of psychosocial needs or distress via telephone for patients or caregivers affected by chronic disease. Two quantitative studies used data collected via telephone interview at 3 months and 6 months post-recruitment from participants in the usual-care group of a trial which recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). Interview data included recall of referrals provided by CIS staff, uptake of referrals, and perceptions of the importance and sufficiency of support from various sources. Semi-structured qualitative interviews were conducted with a purposive sample of distressed caregivers from the Structured Triage and Referral by Telephone trial to explore sources of distress, access to supportive care and preferred support services. Results: The systematic review identified 13 studies across multiple settings and identified nine validated distress-screening tools in community use, particularly in relation to cancer. However, not all services used an established referral protocol. Re-screening for distress was limited. Patients (n=363) and caregivers (n=260) who completed the 3-month survey reported high levels of referral to a service (98%, 97% respectively), with uptake highest for information materials (91%) and lowest for specialist psychological services (30%). Significant association was found between older age and less uptake of services (p = .03). More than two thirds of distressed patients (n=234) and caregivers (n=152) who completed the 6-month survey reported that family and friends were very important sources of emotional support. Significant associations were found between reporting insufficient support and each of the distress levels (p<.0001) and being non-partnered (p=.0115). The qualitative work identified five major themes in relation to caregiver sources of distress and two major themes in relation to access, barriers and preference for delivery of services. Conclusion and Implications: Protocol-driven approaches to the use of validated distress-screening tools via telephone are warranted, including re-screening. Supportive care referrals alone do not result in service use. The high uptake rate of CIS call-backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to psychological services are required, particularly for older people and caregivers. Emotional support from both health care professionals and social networks is important, and yet is sometimes insufficient, particularly for people with higher distress and those without partners. Efforts are needed to ensure a wide network of support is activated to minimise the distress experienced by patients and caregivers. Caregivers, in particular, require encouragement to acknowledge and discuss their own needs.