4.6.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’.
Therapy is often associated with a number of symptoms and physiological abnormalities. Patients are highly susceptible to infection from prolonged neutropenia and this can result in significant comorbidity and mortality. Patient education and strict adherence to universal neutropenic guidelines, access to infection control specialists, close monitoring of full blood count, and early intervention of neutropenic sepsis is essential. Patients need to be educated on the importance of personal hygiene and particularly dental care to minimise infection. Antimicrobial therapy including antiviral, antifungal and antibiotic therapy is often administered prophylactically to reduce risk of infections.
A number of specific challenges and needs may arise for patients at this time:
- assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns
- potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
- side effects resulting from high-dose therapy including alopecia, fatigue, cytopenias, mucositis (oral and bowel), immunosuppression resulting in increased infection, fluid retention, dyspnoea, graft-versus-host disease (GVHD; following allo-SCT) and organ toxicity (interstitial pneumonitis, veno-occlusive disease)
- additional supportive care required to address the immunosuppressive effects and long-term side effects of therapy for patients treated with allo-SCT – issues may include infertility, GVHD, increased risk of infection, anaemia, bleeding, mouth ulcers and fatigue
- early recognition and prompt initiation of corticosteroids for differentiation syndrome (NCCN 2015) and consideration for interruption of therapy when required
- chemically induced menopause that leads to atrophic vaginitis and dyspareunia, and changes in androgens that may alter libido and orgasm – these require sensitive discussion
- gastrointestinal symptoms, such as nausea, vomiting, severe mucositis, loss of appetite, dysgeusia, diarrhoea or constipation, as a result of treatment require optimal symptom control (with medication, total parenteral nutrition, analgesia and mouth care) and referral to a dietitian if dietary intake is affected
- malnutrition, which can occur as a result of disease or treatment (validated malnutrition screening tools should be used at the key points in the care pathway to identify patients at risk of malnutrition and refer to a dietitian for nutrition intervention)
- cognitive impairment, which patients treated with allo-SCT report to be a major component of quality-of-life impairment and can last for years post procedure (Buchbinder et al. 2018)
- assistance with managing complex medication regimens, multiple medications, assessment of side effects and assistance with difficulties swallowing medications (referral to a pharmacist may be required)
- decline in mobility or functional status as a result of treatment
- assistance with beginning or resuming regular exercise with referral to an exercise physiologist or physiotherapist (COSA 2018; Hayes et al. 2019).
Early involvement of general practitioners may lead to improved cancer survivorship care following acute treatment. General practitioners can address many supportive care needs through good communication and clear guidance from the specialist team (Emery 2014).
Patients, carers and families may have these additional issues and needs:
- financial issues related to loss of income (through reduced capacity to work or loss of work) and additional expenses as a result of illness or treatment
- advance care planning, which may involve appointing a substitute decision-maker and completing an advance care directive
- legal issues (completing a will, care of dependent children) or making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.
Cancer Council’s 13 11 20 information and support line can assist with information and referral to local support services.
For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.