Description of the condition
Multiple sclerosis (MS) is a chronic neurological disease characterised by patchy inflammation, gliosis and demyelination within the central nervous system (CNS) that affects approximately 1.3 million persons worldwide (WHO 2008). Although considerable progress in pharmacological and non-pharmacological treatment of MS has occurred, it remains the third most common cause of neurological disability in adults aged 18 to 50 years (after trauma and arthritis) (Dombovy 1998). The global median estimated prevalence of MS is about 30 per 100,000 population (range 5 to 80), with a female preponderance (female to male ratio of 3:1) (Trisolini 2010; WHO 2008). The median estimated incidence of MS globally is 2.5 per 100,000 (with a range of 1.1 to 4) (WHO 2008).
The patterns of presentation in MS are heterogeneous and include: ‘relapsing remitting’ (RR) MS (85%), characterised by exacerbations and remission; ‘secondary progressive’ (SP) MS with progressive disability acquired between attacks (in 70% to 75% who start with RR, it is estimated > 50% will develop SPMS within 10 years; 90% within 25 years); ‘primary progressive’ (PP) MS (10%), where persons develop progressive disability from the onset; and ‘progressive relapsing’ (PR) MS (5%), where persons begin worsening gradually and subsequently start to experience discrete attacks (MS Australia 2012; Weinshenker 1989). The prognosis in MS is variable, hard to predict and depends on the type, severity and location of demyelinating lesions within the CNS (Hammond 2000; MS Australia 2012). Various factors such as older age at onset, progressive disease course, multiple onset symptoms, pyramidal or cerebellar symptoms and a short interval between onset and first relapse were significantly associated with worse prognosis in one study (Hammond 2000). Persons with MS (pwMS) have a prolonged median survival time from the time of diagnosis of approximately 40 years (Weinshenker 1989). Therefore, issues related to progressive disability (physical and cognitive), psychosocial adjustment and social re-integration progress over time. These have implications for pwMS, their carers, treating clinicians and society as a whole, in terms of healthcare access, provision of services and financial burden (Pfleger 2010; Trisolini 2010).
Persons with MS can present with various combinations of deficits such as physical (motor weakness, spasticity, sensory dysfunction, visual loss, ataxia), fatigue, pain (neurogenic, musculoskeletal and mixed patterns), incontinence (urinary urgency, frequency), cognitive (memory, attention), psychosocial, behavioural and environmental problems, which limit a person’s activity (function) and participation (Khan 2007). Cognitive and behavioural problems can be subtle and often precede physical disability requiring long-term care (Beer 2012; Weinshenker 1989). The care needs in this population are complex due to cumulative effects of the impairments and disabilities, the ‘wear and tear’ and the impact of aging with a disability. Longer-term multidisciplinary management is recommended, both in hospital and in community settings to maintain functional gains and social re-integration (participation) over time (Khan 2007; Khan 2010; WHO 2008). Despite recent advances in MS treatment and care, many pwMS are unable to access these developments due to limited mobility, fatigue and related issues, plus costs associated with travel. The emerging advances in information and communication technology (ICT) may represent an alternative efficient and cost-effective method to deliver rehabilitation treatment in a setting convenient to the patient, such as their home.
Description of the intervention
The terminology used in ICT in healthcare is often used interchangeably and includes: ‘telemedicine’, ‘telehealth’, ‘telehealthcare’, ‘e-Health’, ‘e-medicine’, ‘telerehabilitation’ etc. (Currell 2000; McLean 2010; McLean 2011; Winters 2002). In this review the term ‘telerehabilitation’ will be defined as ‘the use of information and communication technologies as a medium for the provision of rehabilitation services to sites or patients that are at a distance from the provider' (Rogante 2010; Theodoros 2008 ). The applications to date encompass systems ranging from low-bandwidth low-cost videophones to highly expensive, fully immersive virtual reality systems with haptic interfaces (Theodoros 2008).
Telerehabilitation extends rehabilitative care beyond the hospital process and facilitates multifaceted, often psychotherapeutic approaches to modern management of pwMS at home or in community (Huijgen 2008). It provides equal access to individuals who are geographically remote and to those who are physically and economically disadvantaged (Hailey 2011; Rogante 2010) and can improve the quality of rehabilitation delivered (Hailey 2011; Kairy 2009; McCue 2010; Rogante 2010; Steel 2011). It can give healthcare providers an opportunity to evaluate the intervention previously prescribed, monitor adverse events and identify areas in need of improvement. The treating therapists can monitor patients’ progress and optimise the timing, intensity and duration of therapy as required, which may not always be possible within the constraints of face-to-face treatment protocols in the current health systems (Hailey 2011; Steel 2011).
How the intervention might work
Telerehabilitation is an emerging method of delivering rehabilitation that uses technology to serve patients, clinicians and systems by minimising the barriers of distance, time and cost. The driving force behind this has been the need for an alternative to face-to-face intervention, enabling service delivery in the natural environment – that is in patients’ homes (Hailey 2011). This method of in vivo delivery of healthcare services can address associated issues of efficacy, problems of generalisation and increasing patient participation and satisfaction with treatment.
The benefits and advantages of telerehabilitation have been well documented (Bendixen 2009; Brennan 2009; Chumber 2012; Constantinescu 2010; Johansson 2011; Kairy 2009; Lai 2004; Legg 2004; Russell 2011; Steel 2011). A home-based physical telerehabilitation program was considered to be feasible and effective in improving function in pwMS (Finkelstein 2008). Telemedicine in pwMS as a tool has the potential for improved health care with reduction in care costs (Zissman 2012). A systematic review that analysed rehabilitation therapies delivered at home in stroke survivors showed positive outcomes, with a reduction in the risk of deterioration, improved ability to perform activities of daily living, reduced costs and duration of rehabilitation in a frail elderly population (Legg 2004). Other reports used telerehabilitation to direct multidisciplinary coordinated, goal-directed treatment to monitor clinical progress for patients at a distance (Hailey 2011; Kairy 2009; McCue 2010; Rogante 2010; Steel 2011). In these cases, telerehabilitation offered an opportunity to provide individualised rehabilitation intervention beyond the hospital setting, by regular monitoring and evaluation of the patients' needs and progress, with a range of services suited to the individual and their environment (Hailey 2011; Kairy 2009; McCue 2010; Rogante 2010; Steel 2011). Telerehabilitation also provides comparable health outcomes to traditional in-person patient encounters including improved patient satisfaction (Egner 2003; Finkelstein 2008; Hailey 2011; Huijgen 2008; Kairy 2009). It can encompass single or multiple interventions, or both, aimed at improving patient experience at the level of impairment, activity or participation, and can educate patients (and carers) in their ongoing self management.
Why it is important to do this review
There is a strong evidence base to support the effectiveness of rehabilitation programs for pwMS (Khan 2007; Khan 2010). With increasing financial constraints on healthcare systems, alternative methods of service delivery in the community and over a longer term are now a priority. Telerehabilitation was found to be effective in various neurological conditions including MS (Egner 2003; Finkelstein 2008; Huijgen 2008), stroke (Johansson 2011; Legg 2004), Parkinson’s disease (Giansanti 2008) and other non-neurological conditions such as musculoskeletal conditions (Russell 2011; Tousignant 2011), injuries (Bendixen 2008; Forducey 2003; Houlihan 2011) and chronic diseases (Steel 2011). However, there is as yet no systematic review of studies using telerehabilitation in pwMS to guide treating clinicians for evidence regarding its validity, reliability, effectiveness and efficiency in this population.
This review will analyse published (and unpublished) clinical trials relating to MS and telerehabilitation; identify the evidence base for its use; and discuss issues for future expansion of the evidence base by traditional research and other methods.