Bensink Mark, Wootton Richard, Irving Helen, Hallahan Andrew, Theodoros Deborah, Russell Trevor, Scuffham Paul, Barnett Adrian G
The University of Queensland Centre for Online Health, Brisbane, Australia.
BMC Health Serv Res. 2007 Mar 5;7:38. doi: 10.1186/1472-6963-7-38.
Providing 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 cancer
METHODS/DESIGN: We 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+ < or = 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.
This 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.
提供持续的以家庭为中心的支持是儿童癌症护理的一个重要组成部分。对于居住在地区和偏远地区的家庭来说,获得专科支持的机会受到医疗保健专业人员的可及性和可达性的限制,而可达性常常因距离、时间、成本和交通等因素而降低。这项工作的主要目的是调查视频电话对支持首次带着新诊断出癌症的孩子回家的地区和偏远家庭的成本效益。
方法/设计:我们将招募162名儿科肿瘤患者及其家庭参加一项单中心随机对照试验。来自地区和偏远地区的患者,根据澳大利亚可及性/偏远指数(ARIA+)大于0.2进行分类,将被随机分配到视频电话支持干预组或常规支持对照组。大城市家庭(ARIA+≤0.2)将被招募作为额外的常规支持对照组。被分配到视频电话支持干预组的家庭将在首次出院回家后的12周内,通过视频电话服务获得常规支持以及与专科多学科团队成员进行教育、沟通、咨询和监测。常规支持对照组的家庭将接受标准护理,即专科多学科团队成员在住院期间、门诊就诊或家访时面对面提供支持,或者为居住在远离医院的家庭通过电话提供支持。主要结局指标是使用医学结局调查(MOS)简表SF - 12在基线、4周、8周和12周时测量的父母与健康相关的生活质量。次要结局指标包括:父母的信息和情感支持;父母感知到的压力、父母报告的患者生活质量和父母报告的兄弟姐妹生活质量、父母对护理的满意度、提供改善支持的成本、医疗保健利用率以及家庭的经济负担。
这项研究将确定使用视频电话改善为地区和偏远儿科肿瘤患者及其家庭提供的临床和心理社会支持的可行性、可接受性和成本效益。