Canterbury DHB

Context

Adolescent and Young Adults (AYA)

This section was reviewed by Dr Ruth Spearing in March 2018. The next review date is March 2021.

Please refer 12–25 year-olds with a High Suspicion of Cancer to the AYA Cancer Key Worker as soon as you become aware of them.

027 382 6584

The Adolescent and Young Adult Cancer Service was set up by the Ministry of Health to improve the outcomes for 12–25 year-olds diagnosed with cancer in New Zealand. Research shows that Adolescents & Young Adults have not seen the same improvement in survival rates compared with children and adults. Also, New Zealand AYA cancer patients have poorer survival rates than international AYA. The reason for this survival disparity is thought to be related to the following factors:

  1. Differences in disease biology

    For example, when compared to paediatric patients, AYA patients with acute lymphoblastic leukaemia (ALL) have a higher incidence of ALL subtypes associated with a poorer prognosis. These include: T-cell ALL, Philadelphia-positive ALL, and Philadelphia-like ALL.

  2. Tolerance of therapy

    For example, AYA with ALL have different treatment toxicity profiles when compared to younger patients, such as higher rates of osteonecrosis. Treatment toxicities specific to this group have been associated with pharmacokinetic differences in hormone regulation, physiological differences with volume of distribution (e.g., adipose vs lean body weight), protein binding, and hepatic and renal function.

    Low clinical trial participation and involvement in research

    For example, barriers to clinical trial participation among AYA include a lack of age and diagnosis specific clinical trials, poor referral rates, and policy and regulatory barriers regarding age and access. Visit the AYA Cancer Service intranet page for a list of open clinical trials for AYA with Cancer or the AYA Cancer Network website.

  3. Diagnostic delay

    For example, AYA cancer patients are more likely to present later than paediatric or adult patients. This is thought to be related to insufficient education of cancer symptom awareness to the AYA population, resulting in poor health literacy; delays in seeking medical attention due to access issues; and due to its rarity in this population, a lower level of suspicion of cancer by health care providers.

  4. Adolescent development and adherence

    For example, the psychosocial care needs of AYAs with cancer tend to be broader in scope and intensity than in younger and older patients. There is substantial cognitive development, social and emotional changes that occur during adolescence which is difficult enough without a cancer diagnosis on top. Adherence becomes more of an issue during the adolescent years; some studies report that up to one-half of AYAs are non-adherent with oral chemotherapy.

  5. Ethnicity

    For example, research has found that five-year relative survival by ethnicity for 15–24 year-old cancer patients to be significantly lower for Māori (69.5%) and Pacific peoples (71.3%) than it was for non-Māori/non-Pacific peoples (84.2%). This disparity is not found in those under 15 years old.

Reference

Service Provision for Adolescent and Young Adult Cancer Patients in New Zealand including Standards of Care, 2016.

In This Section

AYA Cancer Service

Invasive Procedures

Fertility Preservation

AYA Cancer Service

The Canterbury AYA Cancer Service consists of:

Louise Sue

Louise Sue RN, MNurs.

Adolescent and Young Adult Cancer Key Worker (CNS)

Ruth Spearing

Dr Ruth Spearing

AYA Clinical Lead/Haematologist

 

 

 

 

Tristan Pettit

Dr Tristan Pettit

Paediatric Oncologist

Kate Gardner

Dr Kate Gardner

Oncologist

Sean MacPherson

Dr Sean MacPherson

Haematologist

 

 

 

Kate Danna

Kate Danna

AYA Psychologist

Danielle Duff

Danielle Duff

Radiation Technician

 

The AYA Cancer Key Worker provides a youth development/age appropriate approach to the care of the young person diagnosed with cancer. She provides psychosocial assessment and support, education, advocacy, and co-ordination of care. She works closely with the haematology team and the young person's haematologist. AYA are discussed at the South Island Supra-Regional AYA MDM every second Tuesday between 8.30am and 9.15am.

Key Points at Diagnosis:

Invasive Procedures

Bone Marrow Aspirate, LPs, CVL insertions etc.

AYA will undergo many procedures during their course of treatment. The aim is to avoid causing unnecessary harm and distress to the AYA, so that we can foster trust with their healthcare team, avoid treatment anxiety and fear, and hopefully avoid non-adherence. The majority of AYA report immense distress, anxiety and trauma following Bone Marrow Aspirates and LPs, especially if their experience at diagnosis was without adequate sedation. The AYA Cancer Service aim to have all diagnostic BMAs and LPs to be performed under general anaesthetic or sedation – then we will work with the AYA for any future procedures.

General Anaesthetic

The CHOC team may have available GA slots on their weekly GA list on Wednesday mornings, and are happy to consider AYAs for this list. BMAs and LP/IT chemotherapies are performed by the CHOC IT competent team members. CHOC procedures usually occur between 9am and 10.30am.

To refer an AYA to CHOC list:

If a GA is not available on the CHOC list, then contact the on-call anaesthetist and book the procedure onto the acute theatre list.

Sedation

If IV sedation is the most appropriate option for the AYA, organise this to happen in the Medical Day Unit who will need to observe the AYA's recovery following the procedure.

Other options include oral sedation or nitrous oxide gas (located in the Medical Day Unit) – Arrange with the Medical Day Unit.

Fertility Preservation

Fertility-related distress is common in AYA cancer patients during their treatment and beyond it. Many describe the prospect of therapy-related infertility to be as distressing as the cancer diagnosis itself. Cancer patients in the AYA age group perceive information about their future fertility as a priority, yet they are often dissatisfied with how health providers address this topic. Up to 60% of cancer survivors do not recall the fertility discussions that took place at their diagnosis. The discussion and documentation of fertility issues at the time of diagnosis is a necessary component of informed consent before starting treatment.

The AYA Cancer Key Worker can facilitate fertility discussions and referrals, timing dependent.

Fertility Preservation Options

Males:

Females:

About this Canterbury DHB document (97396):

Document Owner:

Ruth Spearing (see Who's Who)

Issue Date:

March 2018

Next Review:

March 2021

Keywords:

Note: Only the electronic version is controlled. Once printed, this is no longer a controlled document. Disclaimer

Topic Code: 97396