Addressing the psychological wellbeing of the patient

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Overview

Adolescence and young adulthood is a time of inherent stress and vulnerability. To best support AYA patients during their cancer journey, a preventative approach to their psychosocial management is recommended. An essential component of this is the administration of a structured, age-appropriate psychosocial assessment at regular intervals throughout the cancer journey. These assessments should address the needs of the patient and any significant others, such as parents, partner or siblings.

To complement this approach, all young people should have access to social work and specialist psychological support if required. Psychosocial professionals working with AYAs should be aware of their developmental needs and be up to date with evidence-based treatment approaches recommended for AYA care. Where age-appropriate psycho-oncology support is not readily accessible, make connections with community supports and private mental health professionals.

It is important to note that cancer treatment generally involves an accumulation of stress over time. This means that a young patient who exhibited good coping during the early stages of the cancer journey may require additional support and guidance to manage the changing stress levels as their journey progresses. The preventative approach, which involves both regular assessments and informal ‘catch-ups’ with the patient and their family, can safeguard patients from falling through the gaps by identifying the support they need, even as their needs change.


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Incorporate psychosocial screening and care planning as standard in AYA patient management


tick icon Provide psychosocial care within a holistic framework

  • Understand and respect the external pressures and stressors for the young patient. These should be addressed as part of supportive care planning.


tick icon Proactively identify and manage any psychological distress

  • Conduct a brief screening for symptoms of anxiety, depression or other mental health issues that may require referral.
  • Professionals working with AYA patients should be aware of developmental differences and of best practice in managing distress of young people.
  • A referral directory to appropriate community and private mental health professionals should be developed if access to internal psycho-oncologists is not possible or appropriate.


tick icon Be mindful and respectful of the existential or spiritual beliefs and needs of patients

  • Young people should have the opportunity to explore existential and spiritual issues in a trusting relationship.


tick icon Incorporate the survivorship needs of the young person as part of their patient management

  • A psychosocial needs assessment should be conducted at regular intervals during post-treatment care.
  • All institutions treating young people should have access to resources and/or referral information that can help the young person to maintain connections with their community throughout their treatment and feel ‘normal’.

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Incorporate psychosocial screening and care planning as standard in AYA patient management

Age-based screening tools and assessment measures are crucial to the provision of best practice care for AYA patients (National Service Delivery Framework for Adolescents and Young Adults with Cancer).[1] The use of appropriate psychosocial tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. A preventative approach, comprising regular psychosocial screening and care planning, enables treating teams to identify those patients at risk of a negative psychosocial outcome, monitor the progressive coping of the patient, and identify areas of need requiring additional care and support.

  • It is recommended that all treating teams use the Adolescent and Young Adult Oncology Psychosocial Care Manual [2] – a three step psychosocial care pathway that integrates an AYA specific Screening Tool, Care Plan and Assessment Measure. This manual supports the young person throughout their treatment by addressing current support needs, and takes into consideration needs that may be most significant post-treatment for healthy survivorship.
  • At a minimum, it is recommended that administration of the Screening Tool occurs at:
    • diagnosis
    • early treatment
    • six months post-diagnosis, and
    • treatment completion.
  • Resources permitting, a full psychosocial assessment is also recommended during the early care-planning phase and at regular intervals throughout the cancer journey, especially if pre-existing mental health or psychological disorders are noted at referral.
  • To support the outcomes of the tools, each young patient should have access to specialist age-appropriate psychological support.
  • Treatment centres without ready access to such services are encouraged to develop a referral directory of appropriately trained mental health professionals in the community for referral.
  • A list of support services and resources should be provided to every young person at the time of diagnosis and at appropriate intervals throughout treatment. The list should include services provided at the treating institution, within the community and online, and highlight those that are AYA-specific, and any that are disease-specific.

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Provide psychosocial care within a holistic framework

Life does not stop for cancer. Young patients may continue to feel pressure from other aspects of their life throughout their cancer journey and these pressures may build to create additional stress for the young person. In order to provide holistic psychosocial supportive care, it is important for the treating team to understand, and respect, the external pressures and stressors in the life of the patient. These should be addressed as part of supportive care planning.

  • Identify areas creating undue additional pressure on the young person.
  • Provide education about the benefits of reducing external stressors during this period. Discuss ways to alleviate these stressors.
  • Identify areas of strength within the young person. Explain how personal strengths can support and sustain young people throughout their experience.
  • Assist the young person to identify existing supports and help them to identify possible gaps and strengthen them.
  • Refer the patient for additional support if necessary.

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Proactively identify and manage any psychological distress

While many AYA patients with psychological distress will present in similar ways to adult patients, it is important to note that some young patients may display their distress in ways that are different to adults. Health professionals working with these patients need to be ever vigilant to signs and symptoms of distress in young patients and enable appropriate responses. The interventions to manage and respond to AYA distress should not be assumed to be the same as those used with older patients. Health professionals working with AYA patients should be aware of developmental differences and of best practice in managing distress of young people.

Young people with cancer may experience significant psychological distress such as anxiety, depression, substance abuse and other mental illness. If you are concerned about a patient’s mental health you should make an immediate referral to a psychiatrist, clinical psychological, social worker or other specialist as appropriate. For further advice about referral for specialised care, please consult the National Breast Cancer Centre’s Clinical practice guidelines for the psychosocial care of adults with cancer.

  • Be vigilant to age-typical expressions of distress and the concerns of significant others that the behaviours of the young person are ‘out of character’.
  • Young patients may express distress through behavioural manifestations, given they variously lack the capacity to inhibit overwhelming feelings and have yet to acquire more considered, less impulsive ways to manage strong emotions. This may include shouting at staff and/or parents, punching walls, throwing things, snapping and/or refusing to talk to newly introduced support staff, or non-compliance issues. These behaviours require sensitive and age- and developmentally-appropriate management, e.g. promoting a sense of normalcy, flexibility, open communication, and being non-judgmental.[3]
  • Comments about feeling ‘bored’ can be an indicator of depression in this age group.
  • A referral to a mental health professional, as per institutional protocol, is recommended if there are any sudden or significant changes in the areas of sleep, appetite, energy, weight, or heart rate that do not appear to be directly related to the physical and/or medical implications of the cancer treatment are reported.
  • Any noticeable changes in affect or appearance may be related to changes in mood and mental health and should be noted, as should feelings of hopelessness and diminished affect.
  • Where indicated, conduct a brief screening for symptoms of anxiety, depression or other mental health issues that may require referral.
  • Be particularly mindful of patients who present with specific risk factors for depression or other psychological distress.
  • Acknowledge and discuss body image concerns, often created by physical changes or disfigurement due to treatment. Concern about body image can be a significant source of distress, social anxiety and/or social isolation for a young person.
  • A referral directory to appropriate community and private mental health professionals should be developed and used if access to internal psycho-oncologists is not possible or appropriate.
  • In high risk situations, health professionals should follow the policies and procedures of the treating institution.

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Be mindful and respectful of the existential or spiritual beliefs and needs of patients

The adolescent and young adult life stage is a time of existential and spiritual growth. A cancer diagnosis can trigger existential questioning that affects how the young person makes sense of, and copes with, their cancer journey.[4]

  • All those working with young patients must be mindful of the existential needs of this age group.[4]
  • Young people should have the opportunity to explore existential and spiritual issues in a trusting relationship.[5]
  • While spiritual support may not always require specific pastoral care services, referral to such services should be considered if indicated.

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Incorporate the survivorship needs of the young person as part of their patient management

Due to the complexities of cancer treatment, the often disabling effects of treatment and the rigid timelines, much of the emotional processing associated with a cancer diagnosis does not occur until the survivorship phase. It is often not until after treatment ends that young people start to process the enormity of their experience, the fears associated with surviving a life threatening illness and the existential issues that accompany such an experience. Many young adult survivors express concerns about their health and physical appearance and their future health, fertility (and risks to children they may have) and standard of living. They also may have persistent distress and anxiety over recurrence, death or late effects.[6]

Young people can experience difficulties reintegrating into their old friendship groups with a sense that they are somehow ‘separate’ from others due to their experiences.[5] Research also indicates that survivors may have difficulties negotiating or sustaining intimate relationship: cancer survivors of both genders experience difficulty in the communication of past diagnosis, sense of difference and of being ‘damaged goods’, and pervasive embarrassment.[7]

  • At the completion of treatment the treating institution should provide the young person with a written survivorship care plan, summarising their cancer diagnosis and all treatment provided, recommendations for future care, advice about maintaining a healthy lifestyle, legal rights affecting employment and insurance, and the availability of psychological and support services.[8]
  • Survivors of AYA cancers have identified post-treatment supportive care and counselling as a major unmet need.[9] Survivors should be provided with an opportunity to discuss their feelings with a trained professional.
  • Diminished quality of life is a potential outcome of a cancer experience during this life stage.[10] All young people should have a full assessment of needs and psychosocial functioning during their post-treatment care.
  • Fear of recurrence is an issue for many cancer survivors and has been found to be strongly related to the survivor’s quality of life and psychological wellbeing.[11] It is an area that requires thorough follow-up and management.
  • All institutions treating young people should be given or referred to resources and information that can help the young person to reintegrate into society and feel ‘normal’. This includes documentation about the expected responses to survivorship, return-to-work assistance, educational assistance and psychosocial support services.
  • Consider the information and support needs of the young person’s family members. Parents and siblings may feel unprepared for challenges after the completion of treatment and need information about what to expect and specific issues such as fertility and insurance.[12]
  • Providing opportunities for AYA cancer survivors to meet each other is an important aspect of survivorship and an area of unmet need.[13][9]

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References

  1. CanTeen & Cancer Australia. National Service Delivery Framework for Adolescents and Young Adults with Cancer. 2008 Abstract available at http://www.canteen.org.au/docs/AYA_NSDF_19%20Feb_2009.pdf.
  2. CanTeen Australia. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011.
  3. D'Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer 2011 May 15;117(10 Suppl):2329-34 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21523754.
  4. 4.0 4.1 Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol 2010 Nov 10;28(32):4819-24 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20212259.
  5. 5.0 5.1 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.
  6. 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.
  7. Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health 2010 Aug;47(2):115-25 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20638003.
  8. Institute of Medicine and National Research Council of the National Academies. From Cancer Patient to Cancer Survivor: Lost in transition. Washington: The National Academies Press; 2006.
  9. 9.0 9.1 Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer 2006 Dec 15;107(12):2915-23 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17103383.
  10. Oeffinger KC, Hudson MM. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA Cancer J Clin 2004;54(4):208-36 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15253918.
  11. Lee-Jones C, Humphris G, Dixon R, Hatcher MB. Fear of cancer recurrence--a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psychooncology 1997 Jun;6(2):95-105 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/9205967.
  12. Wakefield CE, Butow P, Fleming CA, Daniel G, Cohn RJ. Family information needs at childhood cancer treatment completion. Pediatr Blood Cancer 2011 Sep 9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21910212.
  13. Decker CL. Social support and adolescent cancer survivors: A review of the literature. Psychooncology 2007 Jan;16(1):1-11 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16917852.

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