Mobile health apps and self-management for spinal cord injury rehabilitation

Abbreviations

SCI

spinal cord injury

mHealth

mobile health

eHealth

electronic health

PA

physical activity

SUS

system usability scale

Introduction

For individuals living with spinal cord injury (SCI), inadequate health management can result in adverse psychological and physical health outcomes including autonomic dysreflexia, pressure sores, bowel and bladder dysfunction, depression, and spasticity ( ). Learning to self-manage health, i.e., symptoms, treatment, and lifestyle changes inherent to living with a chronic condition, has been shown to reduce the severity and prevalence of secondary conditions among those with chronic health condition ( ; ). Recent advancements in smartphone technology have resulted in consumers becoming more actively engaged with using mobile health (mHealth) apps to manage their day-to-day health ( ). Because of the widespread adoption of smartphones and tablets, mHealth has the potential to become an accessible, low-cost approach of self-management intervention delivery ( ). This chapter provides insight into the implementation of mHealth apps for the self-management and prevention of secondary conditions related to SCI. Specifically, this chapter will (1) provide background on chronic disease management, (2) describe traditional approaches to SCI-related health self-management, and (3) highlight the latest research and advancements in mHealth apps for individuals living with SCI.

Chronic disease management

Chronic conditions are long lasting and generally incurable conditions that require varying degrees of management ( ). Examples of conditions meeting these criteria include diabetes, arthritis, dementia, and SCI ( ). Given the varied nature of the aforementioned conditions, their risk factors, prevalence, and management vary considerably. The presence of one chronic condition or disease is often associated or accompanied by subsequent chronic diseases resulting in multimorbidity ( ). Demographic characteristics have also been shown to be related to outcomes associated with chronic conditions. For example, increased age and longer time with injury are both associated with higher rates of secondary conditions among people with SCI ( ). Furthermore, the age at which SCI is acquired displays a bimodal distribution in North America ( ). SCIs earlier in life occur primarily among males, who tend to be injured from high velocity events such as motor vehicle accidents, while SCIs in later life tend to occur from falls equally for both men and women ( ).

Given the prevalence of chronic conditions, interventions that improve self-management have a substantial potential impact both personally and societally. Chronic conditions are thought to be responsible for the deaths of 41 million people each year with a disproportionate percentage of deaths occurring in less resourced countries ( ). Given the global significance of this problem, the World Health Organization Global Action Plan set targets to reduce the prevalence of chronic conditions by 2025 ( ). In Canada age-standardized chronic condition prevalence has been decreasing over time ( ). However, chronic conditions still represent a significant burden to the health care system with 44% of Canadian adults having at least 1 of 10 common chronic conditions and direct health care costs to the Canadian economy of $68 billion annually ( ; ). In England, more than 40% of people aged 65 years and over report having at least one chronic condition and 15% reported having at least two ( ). Similarly, in the United States, chronic conditions equate for 75% of health care costs with 133 million residents living with at least one chronic condition and almost a third living with multiple chronic conditions ( ). Improving management of these chronic conditions would result in considerable personal and societal benefits.

Similar to other chronic conditions, SCI requires complex management as a result of a constellation of both physiological and psychological challenges. Common secondary conditions ( Fig. 1 ) include pressure sores, problematic spasticity, genitourinary dysfunction, autonomic dysreflexia, and depression ( ). Pressure sores occur when an area of skin, often over bony areas, is placed under constant pressure, such as prolonged sitting, resulting in the breakdown of the skin and underlying tissue ( ). Spasticity can be characterized by increased muscle tone, increased tendon reflexes, and increased reflex responses from external stimuli ( ). Genitourinary dysfunction relates to disturbance to the urinary tract and sexual function ( ). Injuries at thoracic level T6 or above may disrupt the autonomic nervous system, which can result in autonomic dysreflexia characterized by high blood pressure along with headaches, sweating, flushing, bradycardia, nasal congestion, feelings of apprehension, and piloerection ( ). Poor management of these secondary conditions, among others, can limit social participation, reduce quality of life, and may prove fatal in extreme cases ( ). Leading causes of death for individuals with SCI include respiratory disease, cardiovascular disease, and sepsis, thus prevention of these through self-management is essential .

Traditional SCI self-management interventions

Following SCI, self-management is encouraged early in the rehabilitation process. Rehabilitation hospitals often provide client education sessions and resources related to self-management techniques. Key self-management topics identified in the client education sessions may involve pressure sores, urinary tract infections, sexual health, pain management, and others; however, motivation to participate in optional sessions and length of stay in inpatient rehabilitation may minimize opportunities to develop self-management skills. Several interpersonal barriers may relate to engagement in self-management classes within inpatient rehabilitation including pain, fatigue, emotional status, denial, low self-efficacy ( ).

A study by revealed the different perspectives patients, caregivers, and managers have about SCI-related self-management interventions. Patients with traumatic SCI emphasized that self-management requires them to take responsibility for their health by incorporating “wellness awareness” and “monitoring for secondary complications” ( , p. 7). Furthermore, caregivers and patients with SCI felt that an understanding of self-management required “ownership of one’s own care/empowerment in care” ( , p. 7). In contrast, managers indicated a belief in shared responsibility between patients and health professionals with implementing self-management interventions ( ). These multiple perspectives are relevant for the development and administration of self-management programs for individuals with SCI.

Historically, self-management programs for chronic conditions have focused on providing information, drug management, symptom management, management of psychological consequences, lifestyle, social support, communication, and others (e.g., goal setting, problem solving, spirituality) ( ). A recent scoping review of self-management interventions following SCI identified that the primary component of programming has been the delivery of general or topic-specific SCI information ( ), which is consistent with the historical focus of self-management programs for chronic conditions.

Although individuals with SCI have identified self-management needs in different areas, programming options are limited. For example, individuals with SCI would like to improve self-management related to exercise nutrition, pain management, aging, communication with healthcare professionals, problem solving, community reintegration, and confidence ( ). Despite the variety of topics believed to be important for SCI self-management interventions, many of the 102 unique self-management programs related to SCI, identified in the aforementioned scoping review, have focused on pain ( ). This suggests a large unmet need.

The self-management needs of people with SCI are diverse and complex. Stakeholders (i.e., individuals with SCI, and their formal and informal caregivers) involved in the development of a self-management app for people with SCI emphasized that it needed to be “individualized and user friendly” ( ). To address the diverse nature of SCI, 54% of interventions included in the aforementioned scoping review incorporated “self-tailoring” ( ). Self-tailoring has the potential to address the unique needs among individuals with SCI.

Many rehabilitation hospitals and experimental interventions have implemented components of Bandura’s social cognitive theory, which “posits that people learn from one another, via observation, imitation, and modeling” ( ). Strategies congruent with social cognitive theory include the incorporation of a social context in self-management delivery that allows for dynamic and reciprocal interactions ( ; ). Not surprisingly, upwards of 45% of SCI self-management programs have adopted a group or mixed (group and individual) approach ( ). Peer-based inpatient programs have been evaluated in major rehabilitation hospitals and have identified benefits such as improved self-efficacy and reduced unplanned readmissions ( ; ).

Nearly 63% of individuals with SCI identified that the best mode of delivery for a self-management program would be “internet-based” ( ). With increasing technology development, the delivery mode of self-management education and resources has been becoming increasingly digital. Digital resources may improve accessibility for individuals with SCI who are based in rural locations, as they are often wide-reaching, cost effective, and accessible for people with SCI using personal computers they have already adapted to using, provided they have access to the internet. In a scoping review of studies published prior to April 2018, identified 17 SCI self-management programs that incorporated online elements, 10 of which exclusively used an online format.

eHealth technology and mHealth apps

First coined by Mitchell and expanded on by Eysenbach, eHealth can be described as information or a health service delivered or enhanced by the internet or related technologies ( ). Instead of being considered simply an adjunctive electronic health technology that supplements traditional face-to-face services, as technology becomes more embedded into healthcare over time, “eHealth” may become an integral part of healthcare ( ). Since the turn of the 21st century, there has been a dramatic shift toward the use of eHealth technologies for health-related self-management and information seeking ( ). Common examples of eHealth technologies include electronic health records, telemedicine, and mHealth apps.

With advancements in smartphones and tablets, mHealth apps have emerged as means to seek health information and better health service delivery and accessibility ( ). Furthermore, the introduction of mHealth apps has made it easier to provide cost-effective, population-based, self-management interventions for individuals living with chronic conditions such as SCI. For example, a study examining the views of individuals with traumatic SCI on the use of mHealth apps for health self-management, found that 63% of participants felt it was the best means of self-management delivery ( ). Popular examples of mHealth apps that promote mainstream self-management include Apple Health, Google Fit, and Samsung Health. However, for individuals with chronic conditions such as SCI, these “one-size-fits-all” mHealth apps may not meet their specific health management needs. As a result, multiple mHealth apps have been developed to promote health self-management training among individuals with SCI.

mHealth app needs among individuals with SCI

Multiple studies have evaluated the mHealth app-specific needs among individuals with SCI. For example, a consumer led study conducted by The Hopkins Centre (Queensland, Australia) explored the perspectives of 138 participants with SCI on a self-management mobile app. It found that a majority of participants (58%) reported that they would use an app to manage at least one SCI-related secondary condition ( ). Furthermore, participants felt that if an app were developed, it should include three key features: (1) communication with healthcare providers, (2) effective self-management advice, and (3) resources and videos on relevant health topics ( ). As part of a needs assessment to guide the development of a healthy lifestyle mobile app for wheelchair users with SCI, goal attainment and social support were identified as critical personal and environment determinants that promote physical activity and healthy dietary behaviors ( ; ). To identify preferred potential features for a web-based physical activity self-management app, a participatory study explored key stakeholders’ perspectives including individuals with SCI and health care professionals ( ). The study identified five key features: (1) guidance management (i.e., exercise tutorials), (2) achievements system (i.e., tool monitoring achievements and milestones), (3) self-regulation strategies (i.e., goal setting and reminders), (4) interactivity (i.e., peers and health professional integration), and (5) format (i.e., appearance and ease of use) ( ). These studies speak to the range in health and lifestyle needs across diverse SCI populations.

Development and pilot implementation of mHealth apps for SCI self-management

Over the past decade, several studies have been conducted to develop and pilot test mHealth apps for SCI self-management ( Fig. 2 ). Apps range from those designed to manage specific secondary conditions to those that serve a variety of self-care-related purposes. In terms of secondary condition-specific apps, for individuals experiencing chronic bladder retention, a web-based mobile app was developed to self-monitor and manage intermittent catheterization, fluid intake, urinary output, and symptoms of urinary tract infections ( ). A study conducted on the feasibility of this app revealed that in a sample of 30 participants, self-management of bladder dysfunction improved, and participants’ self-management scale scores increased significantly ( P = 0.032) ( ). Similarly, to assist with self-managing secondary conditions such as pain, weight gain, and fatigue, a small-scale study was conducted to document the impact of a physical activity (PA) tracking self-management mobile app on overall PA levels among individuals with SCI ( ). By providing real-time feedback on PA levels, in a sample of 20 participants, the majority (69%) demonstrated greater light to moderate intensity PA compared to baseline ( ). In order to develop a mHealth app for pressure injury prevention among individuals with SCI, a study was conducted to develop a working app prototype and conduct usability testing ( ). Using a co-design approach, a working prototype was developed with features that included a pressure injury diary, smart camera, expert consultation service, and knowledge repository. Results from usability testing demonstrated above average system usability scale (SUS) score (78.5/100) with a majority of participants being able to fluently navigate the app ( ; ).

In order to provide individuals living with SCI with an app that can address both general and SCI-specific health self-management needs, we developed a mHealth app funded by the Craig Nielsen Foundation called SCI Health Storylines ( ). SCI Health Storylines ( Fig. 3 ) is a mHealth app that includes various general health tools (e.g., medication tracker, health journal), SCI-specific tools (e.g., SCI goal-setting tool, bowel and bladder tracker, pain tracker), and lifestyle tools (e.g., physical activity tracker, recreational resources tool, nutritional planner). Our app was developed using a user-centered design process with input from rehabilitation inpatients, clinicians, and informal caregivers ( ). During the app’s development, participants identified three core themes about the functionality of the app which needed to (1) be tailor-made for individuals with SCI, (2) target goals to promote self-management, and (3) increase social participation in the community ( ). Furthermore, small-scale intervention feasibility and app usability studies were also conducted among 20 rehabilitation inpatients on the implementation of our app during inpatient rehabilitation and following community discharge ( ; ). In terms of feasibility, our research revealed retention was 85% at inpatient discharge and 70% 3 months post-discharge, participants’ bowel self-management confidence improved between admission and discharge ( P < 0.01), and indicators of strong overall feasibility to support a larger clinical trial ( ). Furthermore, our mobile app was found to have above average SUS scores ( ) both at discharge (78.1/100) and 3 months post-discharge (71.6/100).