None listed
Conditions
Brief summary
The purpose of this study is to determine if a nurse-led, distance-delivered, intervention called ‘Engage’ can be used to increase childhood cancer survivors' self-efficacy, and improve their long-term physical and mental health by promoting engagement in survivorship care. Who is it for? You may be eligible if you are over the age of 16 and were treated for cancer at least 5 years prior to participation in this study, or you may be eligible if you are a parent of a cancer survivor who is less than 18 years old. Study details All participants in this study will receive two online or telephone consultations with a clinical nurse consultant, and a medical case review with a multidisciplinary team. The purpose of these consultations is to provide a referral pathway, and survivorship care plan. Participants will also need to complete four questionnaires at 1, 6, 12 and 24 months. How will this research contribute to childhood cancer survivors? It is hoped that this intervention will be used to improve the quality of life of childhood cancer survivors and reduce pressure on healthcare services associated with managing treatment-related late effects.
Interventions
This project is a Type II Hybrid implementation-effectiveness study aimed at evaluating a nurse-led, distance-delivered intervention for survivors who have become disengaged with their cancer follow-up. Engage offers childhood cancer survivors a novel and low-burden intervention to identify their risk factors and improve their physical and emotional health. It involves two nurse-led consultations to facilitate access to care for survivors. Engage is a synchronous, i.e. ‘live’, intervention with
This project is a Type II Hybrid implementation-effectiveness study aimed at evaluating a nurse-led, distance-delivered intervention for survivors who have become disengaged with their cancer follow-up. Engage offers childhood cancer survivors a novel and low-burden intervention to identify their risk factors and improve their physical and emotional health. It involves two nurse-led consultations to facilitate access to care for survivors. Engage is a synchronous, i.e. ‘live’, intervention with the option of being delivered online or alternatively 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 specially constituted multi-disciplinary team to determine an appropriate referral pathway for a specific medical consultant/s (e.g. a pediatric oncologist, an adult oncologist, a survivorship nurse, a general practitioner, a psychologist, a social worker) 3. A second online or telephone consultation with the CNC to provide medical case review feedback, referral to specialists, a personalised survivorship care plan, and review foreseeable barriers to adherence. In the care plan, participants will be provided with their cancer treatment history and recommendations for ongoing surveillance for late effects. Adherence will be measured through follow-up questionnaires of participants' engagement in recommendations made by the MDT (e.g. get a blood test) and lifestyle and other preventative health behaviours (e.g. to stop smoking). We may also access medical records to assess ongoing attendance at clinic. The second 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 four intervals subsequent to the delivery of the intervention: 1, 6, 12 and 24 months.
Sponsors
UNSW Sydney
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Prevention
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Study inclusion criteria are defined as any individual who: i) is over the age of 16; ii) was diagnosed with a form of cancer prior to 18 years of age; iii) was diagnosed at least 5 years prior to study participation; iv) was treated for cancer at one of the participating hospitals; v) has completed active cancer treatment; and vi) is alive and in remission at the time of study participation; vii) Parents of survivors less than 18 years who meet the above criteria may also be eligible to participate.
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