Engage: A novel multidisciplinary intervention to engage childhood brain cancer survivors
- Conditions
- Paediatric Brain CancerCancer - Children's - BrainPublic Health - Health service research
- Registration Number
- ACTRN12621000590864
- Lead Sponsor
- niversity of New South Wales
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Active, not recruiting
- Sex
- All
- Target Recruitment
- 78
Study inclusion criteria are defined as any individual who:
i)Was diagnosed with a brain cancer* prior to age 18 years (the survivor may currently be any age**);
ii)Was diagnosed with brain cancer more than 5 years prior to study participation (i.e. they have entered long term survivorship);
iii)Was treated for brain cancer at one of the participating hospitals (Sydney Children’s Hospital, The Children’s Hospital at Westmead, and Perth Children’s Hospital);
iv)Has completed active treatment, is alive and in remission at the time of study participation; and
v)Has not received specialist survivorship care in the past 18 months***.
vi)Provides a referral letter from their GP, addressed to the lead specialist of the MDT (as would be the case in all instances where a specialist is requested to provide clinical care).
Note:
* Brain cancer is defined as any central nervous system tumour, including but not limited to intracranial tumours. Both low- and high-grade brain cancers will be eligible for inclusion. Survivors who have experienced cancer recurrence after their first brain cancer diagnosis will remain eligible, as long as they have completed treatment for the recurrence with curative intent before their first consultation with the nurse.
** For survivors who are aged 14 years or younger, we will request the parent participate on their behalf. For survivors aged between 14-18 years of age, they or their parent(s), may participate in the study, based on the maturity of the young adult and family preferences. For all minors (<18 years of age), parents will be approached via the Parent Invitation Letter, and encouraged to provide the accompanying Survivor Invitation Letter and Survivor Information Sheet to their child in order to jointly make a decision around participation.
*** Has not received specialist survivorship care” will be defined as a survivor who has not received care from an oncologist with survivorship expertise. The survivor will remain eligible for inclusion if they have received cancer-related care from their GP. The survivor will remain eligible for inclusion if they have received cancer-related care from their GP. . Survivors whose specialist survivorship care physician believes they would benefit from further engagement will also be eligible. Survivors who express that they have not received adequate care to address the full spectrum of their medical and psychosocial needs will also be eligible.
Study exclusion criteria are defined as any individual who:
i)Was first diagnosed with brain cancer when they were over 18 years of age;
ii)Was diagnosed with brain cancer less than 5 years ago;
iii)Is currently receiving active cancer treatment;
iv)Is currently receiving specialist survivorship care from their treating centre;
v)Is currently experiencing severe difficulties that would make participation too burdensome in the clinical opinion of their treating team, or if spontaneously reported by the survivor or their family (e.g. diagnosed with current psychosis, incapacitating alcohol/drug use, suicidal ideation).
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method To establish clinical effectiveness, there are two primary outcomes for the project:<br><br>(1) Self-reported health-related self-efficacy will be assessed using an 8-item Cancer Self Efficacy measure. This was developed through expanding on a valid 3-item General Health Self Efficacy, which originally measured survivor's belief in their sense of control over their environment and behaviour. The 5 additional items were purpose-designed questions to capture self-efficacy and confidence in obtaining the healthcare that childhood brain cancer survivors more specifically require. [ Follow-ups will occur at the following time points: Baseline (pre-intervention) and at 1 month, 6 months, 12 months (primary timepoint) & 24 months after the second nurse consultation. ];(2) Quality of life will be measured by the EQ-5D-5L.[ Follow-ups will occur at the following time points: Baseline (pre-intervention) and at 1 month, 6 months, 12 months (primary timepoint) & 24 months after the second nurse consultation. ]
- Secondary Outcome Measures
Name Time Method