Addressing physical/medical issues that impact on psychosocial wellbeing
While the physical and psychosocial needs of cancer patients are inextricably linked, for young patients there are some particular physical/medical issues that may impact on their treatment outcomes and psychosocial wellbeing or quality of life during and after treatment. Changes in physical appearance and sexual functioning (and resulting changes in social life and relationships) and loss of reproductive functioning can be particularly distressing for AYAs who are establishing identity and body image.
It is important to identify and manage any risks, but also to facilitate and encourage interventions – such as nutrition and exercise support – that will increase a young patient’s resilience and wellbeing.
Address alcohol and drug use during treatment
Alcohol use is commonplace in the social lives of Australian young people and illicit drug use, while not as normalised as alcohol, is not unusual. There are two main issues that need addressing when considering the alcohol and drug use of AYA oncology patients:
- Patient safety and addressing any complications or dangers that may arise when young people use alcohol and/or drugs when undergoing treatment, and
- Educating the young person to make the best decisions for them regarding the use of drugs and alcohol during their treatment period.
These related issues should be addressed with young people at regular intervals during treatment.
- Questions concerning past and present alcohol and drug use should be included when taking a full medical history. Be aware of your institution’s policies about discussing (and disclosing) drug and alcohol use with adolescents under the age of 18.
- Provide all information in a clear and direct manner, using a non-judgmental approach, and in a confidential environment. Young people with issues that may impact upon the provision of medical treatment, or even those who may have simple questions about having ‘a beer or two on the weekend’, may be reluctant to disclose information if confidentiality is not assured.
- Issues requiring particular consideration include management of drug dependency, exposure to blood-borne illnesses, and interactions with medically prescribed drugs. Appropriate referrals or education should be undertaken if these issues are of concern.
- It is important to be mindful of the significance that feeling ‘normal’ and being ‘part of the crowd’ plays in the AYA developmental stage – and the role that alcohol and drugs may play in this.
- It should not be assumed that AYA patients will avoid alcohol and/or drugs during their treatment. While it should not be condoned by treating teams, alcohol and/or drug use should be recognised in the context of the AYA life stage.
Address the impact of treatment on fertility
There is clear evidence that young people with cancer are concerned about the potential impact of their cancer diagnosis and treatment on their future fertility. Many young patients are not adequately informed about the potential impact on fertility of their cancer treatment and options for preserving fertility. It is important that patients are informed of their options for protecting or preserving their fertility before treatment begins.
In some centres, the practice of discussing the risk of infertility with AYAs diagnosed with cancer and referring them for assisted reproductive assessment is routine. However, many young people report feeling that:
- they were not, or were inadequately, advised of the risk or their options for preserving fertility.
- the decision about whether to pursue fertility preservation or not was made for them
- they were not given enough time to discuss concerns
- they did not fully understand the ramifications of the decision.
See COSA’s guidance on fertility preservation for AYAs diagnosed with cancer for further advice about discussing fertility with AYAs diagnosed with cancer to maximise their awareness and understanding of their options and optimise future fertility outcomes.
- Risks to future fertility should be fully discussed with the patient before the start of treatment. For further advice about when, what and how to discuss, see COSA’s guidance on fertility preservation for AYAs diagnosed with cancer.
- Timely information and advice should be given by appropriately trained clinical professionals to reduce the impression of ‘rushed’ discussions.
- Information should be provided in a clear and direct manner, ensuring that health professionals are respectful, compassionate and comfortable in their discussions.
- Patients interested in fertility preservation procedures should be referred promptly.
- Discussions should be supported by age-appropriate written information (listed in COSA’s guidance on fertility preservation for AYAs diagnosed with cancer).
- Young people should also be offered counselling to assist with decision-making.
Address the impact of treatment on sexuality and sexual function
Research indicates that AYA patients have more sexually related concerns than their healthy peers. While this may be a topic the young person is reluctant to initiate, most will appreciate an open and frank discussion about how their treatment will affect their sexuality and their sexual behaviours. Avoid assumptions or judgements – consider the needs of young people in both heterosexual and homosexual relationships, their religious and cultural beliefs, and their age and experience (e.g. young people who are sexually active or inexperienced may feel uncomfortable).
- The PLISSIT model is a commonly used and effective framework for assessment of sexual issues and interventions to address patients’ concerns. It is recommended as a prompt for discussion with the AYA patient.
- Provide information about safe sexual practice during treatment. Remember young patients are likely to feel very uncomfortable and embarrassed discussing sexual behaviours. Ensure they understand why you’re raising this topic and the possible impact of treatment on their sexuality and sexual function.
- Refer to a sexual health specialist or family planning clinic as required. Consider the age of the patient and any institutional policies when determining whether parental consent is required for referral.
- Advocate on behalf of the patient with the treating team.
- Provide relationship support to partners.
- Provide sexual health information to partners.
Address the impact of treatment on physical function and appearance
Body image is important to young people; focusing on one’s body and how it looks is a central component of this developmental stage. Cancer and/or cancer treatment may cause changes in physical appearance and limitations in functional ability and/or socialisation due to pain, disfigurement or concerns about body image. Most AYA patients will have a general preoccupation with how they look, and the impact of their treatment on their appearance. The issue of weight and muscle loss due to treatment may be upsetting for young people, particularly those whose identity is heavily informed by ideas of strength, fitness, roles in sporting clubs, and movement.
Some of the psychological and physiological challenges faced by cancer survivors can be prevented, attenuated, treated, or rehabilitated through exercise. Although there are specific risks associated with cancer treatments that need to be considered when survivors exercise, there seems to be consistent evidence that exercise is safe during and after cancer treatment and exercise induced improvements can be expected concerning aerobic fitness, muscular strength, QOL, and fatigue.
- Supporting the young person to manage their body image concerns is an essential component of good psychosocial management.
- Providing nutritional advice can assist in recovery, improve general quality of life and wellbeing, and reduce the likelihood of ongoing nutritional problems. Arrange access to a dietician for nutrition support as required.
- When patients are unable to meet the recommended physical activity guidelines on the basis of their health status, they ‘should be as physically active as their abilities and conditions allow’ and should ‘avoid inactivity’. It is recommended that ‘some physical activity is better than none’.
- Consider referral to an Exercise Physiologist for development of an exercise prescription and/or supervision of an exercise program. You can locate an Exercise Physiologist on the Exercise and Sports Science Australia website.
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