None listed
Conditions
Brief summary
The purpose of this research is to assess the acceptability and feasibility of a nurse-led distance-delivered intervention for childhood cancer survivors who have become disengaged with their cancer follow-up. Who is it for? You may be eligible for this study if you are a childhood cancer survivor over the age of 16 or are parents of a childhood cancer survivor currently under the age of 18. Study details: Each participant will be provided with two nurse-led consultations aiming to facilitate access to care for survivors of childhood cancer who have not been followed up in the last 2 years. These consultations will be offered to the participant via WebEx – similar to Skype - or on the phone (as chosen by the participant). After the first consultation with the nurse, the participant’s medical case will be reviewed by a multi-disciplinary team to determine the appropriate route of care. All participants will be invited to complete a questionnaire prior to the intervention and questionnaires at two intervals subsequent to the delivery of the intervention: 1 and 6 months. This study will help to determine the acceptability of the consultations to participants, and we hope will also offer survivors whom currently have no access to healthcare, a new and low-burden way to improve their health.
Interventions
This project is an acceptability and feasibility study aimed at evaluating a nurse-led, distance-delivered intervention for survivors who have become disengaged with their cancer follow-up. Re-engage offers young ‘disengaged’ survivors who currently access no cancer follow up care a novel and low-burden intervention to identify their risk factors and improve their physical and emotional health. It offers two nurse-led consultations to facilitate access to care for disengaged survivors. Re-engage
This project is an acceptability and feasibility study aimed at evaluating a nurse-led, distance-delivered intervention for survivors who have become disengaged with their cancer follow-up. Re-engage offers young ‘disengaged’ survivors who currently access no cancer follow up care a novel and low-burden intervention to identify their risk factors and improve their physical and emotional health. It offers two nurse-led consultations to facilitate access to care for disengaged survivors. Re-engage is a synchronous, i.e. ‘live’, intervention with the option of being delivered online via WebEx – similar to Skype – or alternatively through Skype or by telephone if requested. Participants will be survivors over 16 years, and parents of survivors who are under 16 years of age. Parents of 16-18 year old survivors may participate in the study instead of the survivor. The most appropriate party (survivor or parent) to participate is at the decision of the family in discussion with the Clinical Nurse Consultant, and based on the maturity of the young adult and family preferences. The intervention will involve: 1. An online or telephone consultation with a clinical nurse consultant (CNC) to collect the survivor’s medical/lifestyle history and assess risk factors (e.g. barriers to care), expected to last approximately 60 minutes. 2. Medical case review by a multi-disciplinary team to determine an appropriate referral pathway 3. A second online or telephone consultation with the CNC to provide medical case review feedback, referral to specialists, provide a personalised survivorship care plan, and review foreseeable barriers to adherence. This consultation is expected to last up to 30 minutes, depending on the nature and number of recommendations for the participant. The first and second consultation will occur one to two months apart, dependent on the availability of the multidisciplinary team to meet, and participant availability for the second consultation. Participants will be invited to complete a questionnaire prior to the intervention and questionnaires at two intervals subsequent to the delivery of the intervention: 1 and 6 months.
Sponsors
UNSW Sydney
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
No
Inclusion criteria
We will open recruitment to: i) Survivors over 16 years. ii) Parents of survivors under 16 years. Parents of 16-18 year old survivors may participate in the study instead of the survivor. The most appropriate party (survivor or parent) to participate is at the decision of the family in discussion with the Clinical Nurse Consultant, and based on the maturity of the young adult and family preferences. Survivors will be eligible if they: iii) were diagnosed with a form of cancer prior to 16 years of age iv) were diagnosed at least 5 years prior to study participation v) were treated for cancer at one of the participating hospitals vi) have completed active cancer treatment vii) are alive and in remission at the time of study participation viii) have not received cancer-related long term follow up care in the last 2 years iv) Or are parents of survivors less than 18 years who meet the above criteria
Exclusion criteria
- Individuals with insufficient English language skills to complete the questionnaire - Individuals who in the opinion of the nurse or oncologist would be unsuitable for the study (e.g. severe mental health difficulties, severe language or cognitive limitations) - Individuals not capable of providing fully informed consent due to any psychiatric or cognitive difficulties Survivors who are not eligible for the intervention will be offered a face-to-face clinic appointment instead.
Outcome results
None listed