Appendix A: Supportive care
Supportive care in cancer refers to the following five domains:
- physical domain, which includes a wide range of physical symptoms that may be acute, relatively short-lived or ongoing, requiring continuing interventions or rehabilitation (NBCC & NCCI 2003)
- psychological domain, which includes a range of issues related to the person’s mental health and personal relationships (NBCC & NCCI 2003)
- social domain, which includes a range of social and practical issues that will affect the individual and their family such as the need for emotional support, maintaining social networks and financial concerns (NICE 2004)
- information domain, which includes access to information about cancer and its treatment, support services and the health system overall (NBCC & NCCI 2003)
- spiritual domain, which focuses on the person’s changing sense of self and challenges to their underlying beliefs and existential concerns (NICE 2004).
Fitch’s (2000) model of supportive care recognises the variety and level of intervention required at each critical point as well as the need to be specific to the individual. The model targets the type and level of intervention required to meet women’s supportive care needs.
While all women require general information, only a few will require specialised intervention. Common indicators in women with cervical cancer who may require referral to appropriate health professionals and/or organisations include the following.
Physical needs
- Weight loss and decrease in appetite can be a significant issue for women and may require referral to a dietitian before, during and after treatment. Validated malnutrition screening tools should be used at the key points in the care pathway to identify women at risk of malnutrition. Where relevant, ICD-10 malnutrition coding should be used.
- Late bowel symptoms after chemoradiotherapy are common and can be significantly distressing for patients. These symptoms can include ongoing diarrhoea, faecal urgency, faecal incontinence, abdominal bloating and pain, bowel obstruction and rectal bleeding. Referral to a specialist gastroenterology team may be beneficial.
- Reduced sexual interest and sexual dysfunction may require referral to medical or psychosocial specialists. Sensitive discussion and referral to a clinician skilled in this area may be appropriate. Sexual dysfunction may persist for several years after treatment.
- Alteration of cognitive functioning in women treated with chemotherapy and radiation therapy requires strategies such as maintaining written notes or a diary and repetition of information.
- Referral to a pharmacist may be useful for women managing multiple medications.
- Although treatments have improved, nausea and vomiting are still serious side effects of cancer therapy. Some women are bothered more by nausea than by vomiting. Managing both is important for improving quality of life.
Psychological needs
- Women diagnosed with cervical cancer may experience a unique emotional and psychological burden because it is largely a preventable cancer as well as being associated with a sexually transmitted virus, raising the spectre of guilt and blame (Hobbs 2008).
- Rape victims and survivors of previous sexual abuse may need additional support at diagnosis and assessment as well as during and after treatment.
- Partners may also experience guilt and a feeling of responsibility for causing cervical cancer as well as fearing that intimacy, in particular sexual intercourse, may cause cancer to return.
- Women who have had extensive pelvic and abdominal surgery or who receive a multimodality treatment strategy are at high risk of depression and heightened anxiety. Regular screening for depression and anxiety specifically for these women is required. Strategies such as information provision, relaxation techniques, meditation (Kearney & Richardson 2006) and a referral to a psychologist or psychiatrist as required may be helpful.
- For some populations (culturally and linguistically diverse backgrounds, Aboriginal and Torres Strait Islander people, and lesbian, transgender and intersex communities) a cervical cancer diagnosis can come with additional psychosocial complexities. Discrimination uncertainty may also make these groups less inclined to seek regular medical and gynaecological care. Access to expert health professionals who have specific knowledge about the psychosocial needs of these groups may be required.
- Fear of cancer recurrence is reported to be extremely common in the post-treatment phase. Some women may have disabling symptoms and may benefit from a referral to psychology services.
- Distress and depression can be just as common in carers and family members, including children.
- Consider a referral to a psychologist, psychiatrist or social worker if the woman is:
- displaying emotional cues such as tearfulness, distress, avoidance and withdrawal
- preoccupied with or dwelling on thoughts about cancer and death
- displaying fears about the treatment process and/or the changed goals of their treatment
- worried about loss associated with her daily function, dependence on others and loss of dignity
- becoming isolated from family and friends and withdrawing from people and activities that she previously enjoyed
- feeling hopeless and helpless about the impact that cancer is having on her life and the disruption to her life plans
- struggling with communicating to family and loved ones about the implications of her cancer diagnosis and treatment
- experiencing changes in sexual intimacy, libido and function
- struggling with the diagnosis of metastatic or advanced disease
- having difficulties with quitting drug and alcohol use
- having difficulties transitioning to palliative care.
Body image
- Support and counselling from a psychologist, psychiatrist, occupational therapist or social worker may be required.
Fertility preservation
- The option of fertility preservation needs to be discussed before treatment begins. Referral to a fertility service for counselling and evaluation of options may be appropriate.
Social/practical needs
- A diagnosis of cervical cancer can have significant financial, social and practical impacts on patients, carers and families as outlined above.
- Significant restrictions to social activities may require referral to a social worker, occupational therapist, psychologist or psychiatrist.
Spiritual needs
- Women with cancer and their families should have access to spiritual support appropriate to their needs throughout the cancer journey.
- Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff. They should also have up-to- date awareness of local community resources for spiritual care.