Addressing physical/medical issues that impact on psychosocial wellbeing

From Cancer Guidelines Wiki
Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals > Addressing physical/medical issues that impact on psychosocial wellbeing
Contents   Key points   Recommendations   Introduction   Communication   Relationships
Physical wellbeing   Psychological wellbeing   Life outside   Management   Palliative care   Resources

Overview

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.[1]

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.


Practice pointQuestion mark transparent.png

Address alcohol and drug use during treatment

  • Include questions about past and present alcohol and drug use when taking a full medical history.
  • Alcohol and/or drug use should be understood and addressed in the context of the AYA life stage.


tick icon Address the impact of treatment on fertility

  • Any risks to future fertility should be raised with the patient before the start of treatment.
  • When required, referrals for fertility preservation services should be made promptly.


tick icon Address the impact of treatment on the patient’s sexuality and sexual function

  • Provide information about safe sexual practice during treatment.
  • Refer to a sexual health specialist or family planning clinic as required.


tick icon Address the impact of treatment on physical function and appearance

  • Acknowledge and discuss physical changes or disfigurement due to treatment and the impact of such on daily living and/or body image.
  • Arrange access to a dietitian and/or exercise physiologist for nutrition and exercise support as required.

Back to top

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.[2] There are two main issues that need addressing when considering the alcohol and drug use of AYA oncology patients:

  1. Patient safety and addressing any complications or dangers that may arise when young people use alcohol and/or drugs when undergoing treatment, and
  2. Educating the young person to make the best decisions for them regarding the use of drugs and alcohol during their treatment period.[3]


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.[4]
  • 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.[4]
  • 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.

Back to top

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.[5][6] 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.[7][8][6][9][10][11]
  • 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.[12][13][14]


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.[15]
  • Information should be provided in a clear and direct manner, ensuring that health professionals are respectful, compassionate and comfortable in their discussions.[15]
  • 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.

Back to top

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.

Back to top

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.[16]

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.[17]

  • Supporting the young person to manage their body image concerns is an essential component of good psychosocial management.[18]
  • 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’.[17]
  • 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.

Back to top

References

  1. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer 2011 May 15;117(10 Suppl):2289-94 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21523748.
  2. Australian Institute of Health and Welfare. National Drug Strategy Household Survey. Canberra: Australian Institute of Health and Welfare;. 2005.
  3. Morgan S, Davies S, Palmer S, Plaster M. Sex, drugs, and rock 'n' roll: caring for adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4825-30 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20498401.
  4. 4.0 4.1 Palmer S, Thomas D. Adolescent and Young Adult Cancer Program, A Best Practice Framework for Working with 15-25 Year Old Cancer Patients Treated Within the Adult Health Sector. Melbourne: Peter MacCallum Cancer Centre; 2008 Abstract available at http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf.
  5. Multidisciplinary Working Group convened by the British Fertility Society. A strategy for fertility services for survivors of childhood cancer. Hum Fertil (Camb) 2003 May;6(2):A1-A39 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/12869793.
  6. 6.0 6.1 Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006 Jun 20;24(18):2917-31 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16651642.
  7. Achille MA, Rosberger Z, Robitaille R, Lebel S, Gouin JP, Bultz BD, et al. Facilitators and obstacles to sperm banking in young men receiving gonadotoxic chemotherapy for cancer: the perspective of survivors and health care professionals. Hum Reprod 2006 Dec;21(12):3206-16 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16887922.
  8. Crawshaw MA, Glaser AW, Hale JP, Sloper P. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care (Engl) 2009 Jul;18(4):381-90 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19594609.
  9. Peate M, Meiser B, Hickey M, Friedlander M. The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat 2009 Jul;116(2):215-23 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19390962.
  10. Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod 2009;Update 15(5):587-59.
  11. Nagel K, Neal M. Discussions regarding sperm banking with adolescent and young adult males who have cancer. J Pediatr Oncol Nurs 2008;25(2):102-6 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18270309.
  12. Edge B, Holmes D, Makin G. Sperm banking in adolescent cancer patients. Arch Dis Child 2006 Feb;91(2):149-52 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16174641.
  13. Burns KC, Boudreau C, Panepinto JA. Attitudes regarding fertility preservation in female adolescent cancer patients. J Pediatr Hematol Oncol 2006 Jun;28(6):350-4 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16794502.
  14. Anderson RA, Weddell A, Spoudeas HA, Douglas C, Shalet SM, Levitt G, et al. Do doctors discuss fertility issues before they treat young patients with cancer? Hum Reprod 2008 Oct;23(10):2246-51 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18614615.
  15. 15.0 15.1 Crawshaw M, Glaser A, Hale J, Phelan L, Sloper P. A Study of the Decision Making Process surrounding Sperm Storage for Adolescent Minors within Paediatric Oncology: Research Report. NHS - Northern and Yorkshire Region: The University of York;. 2003.
  16. Snöbohm C, Friedrichsen M, Heiwe S. Experiencing one's body after a diagnosis of cancer--a phenomenological study of young adults. Psychooncology 2010 Aug;19(8):863-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19862694.
  17. 17.0 17.1 Schmitz KH, Courneya KS, Matthews C, Demark-Wahnefried W, Galvão DA, Pinto BM, et al. American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Med Sci Sports Exerc 2010 Jul;42(7):1409-26 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20559064.
  18. National Institute for Health and Clinical Excellence (NHS). Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer. The Manual. London: NICE; 2005 Abstract available at http://guidance.nice.org.uk/CSGCYP.

Back to top