What additional needs do young patients with cancer have?
There is increasing recognition that AYA patients with cancer have some medical and psychosocial support needs that are different from those of other age groups, and these should be considered during and after cancer treatment.
It is vital for the optimal care and future wellbeing of AYA patients that they have a good understanding of age-specific issues such as preserving fertility and maintaining education, finances, body image and identity, but several studies report this information for AYAs to be lacking.22
Support and advocacy
Dedicated support services for AYAs are essential for delivering developmentally and age-appropriate care. This includes help navigating potentially complex treatment pathways, advocating for AYA patients, supporting their consent and assent processes and providing psychological screening and support (if increased levels of distress are identified). It is also important to support young people with cancer in the normal rites of passage and attending significant events for their age group, such as birthdays, school events, activities with friends, study commitments and examinations. By understanding the importance of these normal life events, staff can work with AYA patients to achieve optimal care through the inevitable challenges of cancer diagnosis and treatment.
Cancer treatment has a significant impact on a patient’s schooling, university education and vocational training. It often results in reduced class attendance and poorer concentration, and it is therefore necessary that health and education staff collaborate to ensure that AYA educational potential and needs are meet.42,43 Additional educational support is provided by patient educational facilities, hospital schools and nursing and allied health staff. Advocacy agencies such as Ronald McDonald House and Redkite provide funding for additional educational support and career advice during and after cancer treatment (see Table).
Health advice and health promotion
It is normal for patients with cancer to participate in risk-taking behaviour, which may include smoking, drinking excessively, taking drugs and taking part in risky sexual behaviour. It is very important that health professionals looking after these patients discuss the risks of this behaviour and the possible effects on disease progression, treatment and longer term outcomes. At the primary care level, GPs routinely provide health interventions to AYAs and have established relationships with services in the community that can provide additional support if required.
Cancer treatment (chemotherapy, radiotherapy, bone marrow transplant and surgery) can be gonadotoxic, resulting in impaired fertility due to damage to the ovaries or testes. The neuroendocrine axis can be affected, resulting in impaired pituitary hormone secretion.44,45 In addition to infertility, patients can experience fatigue, delayed puberty, hypogonadism, osteoporosis and cardiovascular disease as a result of gonadal and hormone deficiency.46 Impaired fertility can have a lasting emotional impact on patients, as well as adversely affecting current and future relationships.47 Fertility preservation is the overarching term used for medical and surgical treatment to minimise the impact of cancer treatment on a patient’s future fertility,45 and there are several techniques recommended as standard practice.44,48 To ensure that fertility preservation is done in a timely manner, GPs should ensure early specialist referral so consultations and procedures can be carried out at the same time as diagnosis and investigation of cancer treatment. COSA have guidelines on fertility preservation for AYAs, which are a useful resource for GPs providing advice and referral for patients with reproductive concerns before, during or after cancer treatment.44
The completion of cancer treatment brings together particular issues for AYA patients to deal with, such as resuming normal life and managing follow-up care. They have to manage the consequences of their cancer and treatment, which may include complications such as cardiac, renal and lung toxicity; cognitive deficits; reduced fertility and further malignancies.46 After cancer treatment, survivors often experience a range of positive and negative emotions, including relief, a sense of gratitude to be alive, fear of recurrence, anger, guilt, depression, anxiety and isolation, and may need psychosocial support for many years.49
There are many challenges in providing palliative care for AYA patients, some of which are very similar to the challenges of providing care at diagnosis for AYAs.50 Palliative care teams with expertise in caring for AYA patients are essential members of the AYA care team,51 and should be integrated into the management of AYA patients as early as possible so the patients can better manage the large number of medical and psychological symptoms they experience.52 AYA patients with cancer are more likely to spend their palliative care period in an acute setting rather than at home or in a hospice. This may be due to end-of-life discussions occurring close to the time of death,52-54 the lack of hospice care for AYA in Australia, or AYA patients being keen to be supported by the teams that have provided their care during active treatment.
Advance care directives such as the AYA Voicing My Choices55 document (currently being adapted for the Australian context) allow AYA patients to have open communication with health professionals and family members about how they would like to be cared for and what kind of treatment they would like at the end of their life. It also allows them an opportunity to document how they would like to be remembered and to communicate information to their families and friends. This approach has been shown to reduce psychological symptoms such as anxiety, sadness and fear.