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Abstract
BackgroundProviding ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancerMethods/designWe will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families.DiscussionThis investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families.
Highlights
Providing ongoing family centred support is an integral part of childhood cancer care
The research assistant responsible for the project will provide written information on the trial informing all potential participants about the study, the frequency, content and expected duration of telephone interviews and what their participation would entail before obtaining consent
By 2011, the incidence of childhood cancer is projected to increase by 7% for females and 5% for males [44]
Summary
Providing ongoing family centred support is an integral part of childhood cancer care. A multidisciplinary team of medical, nursing and allied health professionals provides care and support to children with cancer, as well as their families. Families supporting home care of their child are faced with personal and financial sacrifice, higher risk of fatigue and burnout, and the prospect of managing significant symptomatology in their child. Their own mental and emotional health is directly affected [9] as they experience high levels of depression and anxiety. Providing ongoing support to these families is an essential part of care [10,11,12,13]
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