4.6 Rehabilitation, support and communication
Screening with a validated screening tool (for example, 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 an individual, their carer 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 needs
- Decline in functional status (particularly as a result of limb reconstruction or amputation) may affect the patient’s mobility and ability to take part in everyday activities. Referral to an occupational therapist, orthotist/prosthetist and a physiotherapist or exercise physiologist for assessment, education, intervention and compensatory strategies may assist with maintaining mobility. Patients may require prolonged periods of rehabilitation.
- Healing of underlying structures, infection and other complication risks relating to skeletal implants may require input from wound nurse specialists and infection control specialists.
- Patients who have had a limb amputated to treat their sarcoma require rapid and easy access to prosthetic services.
- Treatment for other physical symptoms such as pain, fatigue and musculoskeletal dysfunction may be required.
- Patients will require ongoing nutritional screening, assessment and management. Reduced oral intake and/or swallowing difficulties and weight loss require referral to a dietitian and speech pathologist (for swallowing difficulties).
- Assistance with managing complex medication regimens, multiple medications, assessing side effects and assistance with difficulties swallowing medications may be required. Refer to a pharmacist if necessary.
Psychological needs
- Disfigurement and scarring from appearance-altering treatment and the need for a prosthesis may require referral to a specialist psychologist, psychiatrist, orthotist/prosthetist or social worker.
- Patients may need support with emotional and psychological issues including, but not limited to, body image concerns, fatigue, existential anxiety, treatment phobias, anxiety/depression, psychosexual issues such as potential loss of fertility, interpersonal problems and sexuality concerns.
Social/practical needs
- Ensure the patient attends appointments.
- Patients may experience isolation from their normal support networks, particularly for rural patients who are staying away from home for treatment.
- Financial issues related to loss of income and additional expenses as a result of illness and/or treatment may require support.
- Help with legal issues may be required including for advance care planning, appointing a power of attorney, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.
Information needs
- Provide appropriate information for people from culturally and linguistically diverse backgrounds.
Spiritual needs
- Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff.
- Patients with cancer and their families should have access to spiritual support that is appropriate to their needs throughout the cancer journey.
The lead clinician should:
- offer advice to patients and carers on the benefits of or how to access support from sarcoma peer support groups, groups for carers and special interest groups
- discuss the treatment plan with the patient and carer, including the intent of treatment and expected outcomes
- provide the patient and carer with information on possible side effects of treatment, self-management strategies and emergency contacts
- recognise the ability of the patient and carers to comprehend the communication
- initiate a discussion regarding advance care planning with the patient and carer.
The lead clinician should:
- communicate with the person’s general practitioner about their role in symptom management, psychosocial care and referral to local services
- ensure regular and timely two-way communication regarding
- the treatment plan, including intent and potential side effects
- supportive and palliative care requirements
- the patient’s prognosis and their understanding of this
- enrolment in research and/or clinical trials
- changes in treatment or medications
- recommendations from the multidisciplinary team.