3.5.2 Supportive care

Screening with a validated screening tool (such as the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist), assessment and referral to appropriate health professionals or organisations is required to meet the identified needs of the patient, their carer(s) and family.

In addition to the other common issues outlined in the Appendix, specific needs that may arise at this time include the following:

Physical

  • Fatigue/change in functional abilities is a common symptom, and patients may benefit from referral to occupational therapy.

Psychological

  • Many patients with CUP find the uncertainty surrounding their disease and the limited treatment options difficult and would welcome the opportunity to ask questions and learn about others’ experiences (Boyland & Davis 2008).
  • Many patients with CUP and their clinicians have a poor understanding of their illness, difficulty in explaining their illness to others, and a sense of frustration in health professionals not having the answers (Boyland & Davis 2008, Karapetis et al. 2017).
  • Depressive symptoms are higher in people with CUP when compared with people with cancer of a known origin, so they require more psychosocial support and specific interventions (Hyphantis et al. 2013).
  • Information about genomic profiling available via CUP research projects should be provided to patients.
  • GPs play an important role in coordinating care for patients, including assisting with side effects and offering support when questions or worries arise. For most patients, simultaneous care provided by their GP is very important (Lang et al. 2017).
  • Patients may require help with psychological and emotional distress while adjusting to the diagnosis, treatment phobias, existential concerns, stress, difficulties making treatment decisions, anxiety/depression, loss of previous life roles including driving, and interpersonal problems.

Social/practical

  • Patients may need support to attend appointments.
  • Patients may need guidance about financial and employment issues (such as loss of income and having to deal with travel and accommodation requirements for rural patients and caring arrangements for other family members).

Information

  • Patients with CUP will most likely undergo extensive testing, and support and information should be provided to assist with any distress while undergoing these tests (Wagland et al. 2017).
  • CUP patients are more likely to want more written information about their type of cancer and tests received but less likely to understand explanations of their condition (Wagland et al. 2017).
  • Patients from culturally and linguistically diverse backgrounds may need information provided in other formats.
  • Patients may need advice about safe driving.

Spiritual needs

  • Lead clinicians should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff.
  • Patients and their families should have access to spiritual support appropriate to their needs throughout the cancer journey.