Canterbury DHB

Adolescent and Young Adults (AYA)

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

Please refer 12 to 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 to 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 versus 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.

AYA Cancer Service

The Canterbury AYA Cancer Service consists of:

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:

• Refer AYA to the AYA Cancer Key Worker – 027 382 6584
• Key Worker will attend FSA where possible
• Assess AYA's ability to cope with invasive procedures at diagnosis – the aim of the AYA Cancer Service is for all AYA to have their initial BMA/LP under either a general anaesthetic or sedation. (See section below).
• Fertility Risk Assessment, discussion and referral to Fertility Associates before starting treatment. The AYA Cancer Key Worker can help with this. (Refer to fertility section below).
• Treatment Location? – Where is the most appropriate place for the AYA to have treatment?
  • AYAs aged ≤20 years should be assessed to determine whether they are best treated in CHOC or B6. The AYA Cancer Key Worker will help with this. It will be based on the AYA's social and developmental circumstances, as well as their personal preference and proposed treatment plan.
  • Bone Marrow Transplant donors and recipients aged <16 years are generally assessed/treated in CHOC, as specified in the CDHB child health policy. See the CDHB Child Health e-Guidelines.
  • ASB – AYA Cancer Unit: Opening in 2019, the AYA Cancer Unit will care for all AYA patients aged between 15–25 years old, including oncology, haematology, and paediatric oncology inpatient and outpatients.
• Open Clinical Trial? – Find out if there is an open clinical trial for the AYA's diagnosis and treatment on the CDHB intranet or the AYA Cancer Network website.

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:

• Email Jan Millar (Jan.Millar@chdb.health.nz) and Rachel Wilson (Rachel.Wilson@cdhb.health.nz)
• Include:
  • Name
  • DOB
  • NHI
  • Diagnosis
  • Procedure requested (If BMA, include: unilateral/bilateral, +/- trephine and ensure request form arrives with patient with specific tests requested)
  • Intrathecal agent to be administered
  • Treatment cycle
  • Who to contact if CHOC staff are not available to perform procedure but there is a slot available e.g., haematology registrar
• Request forms and chemotherapy need to be filled out/prescribed by adult haematologist
• Ensure blood tests are satisfactory and consents are completed before transfer to paediatric outpatients on the Tuesday morning
• Contact Jan Millar on 027 208 7310 or the CHOC registrars (pagers 8139/8905) to confirm time of procedure, where to pre-admit AYA etc.

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.

• Determine fertility risk

  Refer to the fertility risk assessment tables in Fertility Preservation for People with Cancer: A New Zealand Guideline along with fertility preservation options for males and females.

  It is important to inform the AYA of their potential fertility risk along with an explanation that this information is not necessarily accurate for AYAs, especially in females where they are based on amenorrhea rather than more advanced tests like Anti-Mullerian Hormone (AMH).

  It is also important to explain the risk categories e.g., although their treatment falls into low risk, this represents a risk ≤30% (individual AYAs interpret this differently).

  It is known that younger patients receiving chemotherapy generally have somewhat less infertility post-chemotherapy than older patients.

• Determine risk associated with delaying treatment

  Find out if there is any research demonstrating poorer survival outcomes if start of the treatment is delayed.

• Check MOH funded fertility preservation

  AYA undergoing treatment for cancer are entitled to funded fertility preservation if:

  • they do not already have any children
  • there is a risk to the fertility from their cancer treatment (low/medium or high risk)
  • they are likely to survive their treatment.
• Discuss fertility risk and safety in delaying treatment with patient, and offer referral to Fertility Associates.

  For the referral, include:

  • Name:
  • DOB:
  • Mobile number:
  • Email address:
  • NHI:
  • Address:
  • Bloods required (see below)

  Telephone Fertility Associates:

  • Male – Phone 03 375 4000, ask for Lab
  • Female – Phone 03 375 4000

Fertility Preservation Options

Males:

• Sperm cryopreservation:

  The AYA should be given the choice for this to occur in the privacy of their own home (if possible), private room at Fertility Associates, or on the unit. The specimen needs to be sent to Fertility Associates within 1 hour with associated consent forms (provided by fertility associates – they will fax out after referral).

  Bloods required with referral: HIV, HepB and HepC

• Testicular Biopsy:

  If for some reason the AYA is unable to produce a sample, there is the possibility for a testicular biopsy to be performed. This needs to be discussed with the haematologist and fertility specialist to determine if it is a viable/safe option for the AYA.

Females:

• Embryo cryopreservation:

  Requires 7–14 days to stimulate oocytes. Usually requires the AYA to have a partner with whom she is ready and prepared to have children.

• Oocyte stimulation and cryopreservation – Requires 7–14 days.

  Patients with acute leukaemia and aggressive lymphomas cannot usually wait 7–14 days before starting treatment.

• Ovarian harvest and cryopreservation:

  Option for young women who are pre-pubertal or cannot delay treatment. Funding available for those ≤ 18 years who do not have Leukaemia, unless undergoing BMT, via the Children’s Oncology Ovarian Tissue Cryopreservation Protocol. Can be privately funded.

  Bloods required with referral: HIV, HepB and HepC + other bloods will be ordered by Fertility Specialist after consultation.

Topic Code: 97396