Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study
Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study
复制标题
DOI：
10.1136/bmjopen-2018-028525
复制
发表时间：
2019-10-01
期刊：
影响因子：
2.9
通讯作者：
McDermott, Christopher J.
中科院分区：
文献类型：
--
作者：
Hobson, Esther V.;Baird, Wendy O.;McDermott, Christopher J.
运动神经元病（MND）患者在专科、多学科诊所的护理与生存率的提高有关，但这种方法并不普遍。我们想试点和建立一个新颖的远程医疗系统的最终试验的可行性（运动神经元疾病的远程医疗，TIM）。设计一项为期18个月，单中心，混合方法，随机，对照试点和可行性研究。干预TIM远程医疗加常规护理与常规护理。设置在英国的一个专家MND护理中心。参与者MND患者及其主要非正式护理人员。主要和次要的结果措施招募，保留和数据收集率，临床结果，包括参与者的生活质量和焦虑和depress.Results招募达到了40例患者和37照顾者的目标。参与者的特征反映了那些参加专科诊所，包括那些有严重残疾和技术经验有限的人。保存和数据收集良好。80%的患者和82%的护理参与者报告在6个月时完成了结果测量。使用纵向分析，重复测量生活质量（QoL），在确定性试验中建议每组样本量为131例。研究方法和干预措施能被积极参与研究的被试所接受。参与负担低和干预措施的可获得性意味着参与障碍最小。然而，这项研究强调了评估干预措施的相关费用的困难，在这样一个罕见的疾病和困难的招聘产生严格的证据的影响，在这样一个复杂的intervention.Conclusion一个明确的试验TIM是可行的，但具有挑战性。干预的复杂性和患者人群的异质性意味着随机对照试验可能不是评估TiM进一步开发和实施的最佳方式。
Objectives Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.Design An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.Intervention TiM telehealth plus usual care versus usual care.Setting A specialist MND care centre in the UK.Participants Patients with MND and their primary informal carers.Primary and secondary outcome measures Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.Results Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.Conclusion A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.