Self-Management Interventions
Although several definitions and taxonomies have been proposed (McIntyre et al. 2020), self-management has been defined by Barlow et al. (2002) as “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition”.
SCI is increasingly being viewed as a chronic disease, like diabetes, placing greater emphasis on the role of self-management as a means for improving long-term outcomes (Dobkin et al. 2016). It has been shown that self-management approaches are increasing in popularity for addressing a range of issues post SCI, including the management of secondary health conditions (e.g., pain management, pressure ulcer prevention), health promotion (e.g., physical activity, weight loss), emotional well-being and coping, and community living (McIntyre et al. 2020). Specifically, effective self-management is associated with more physical activity in people with chronic conditions other than SCI (Cramp et al. 2013; Ferrier et al. 2011; Taylor et al. 2012), and also in people with SCI (Arbour-Nicitopoulos et al. 2009; Froehlich-Grobe et al. 2014; Nooijen et al. 2016a; Warms et al. 2004).
However, there is no gold standard on what constitutes self-management in SCI, and studies usually use different tools, formats, and resources to implement their program (McIntyre et al. 2020). Current studies include methods of behavioral intervention (Kooijmans et al. 2017; Nooijen et al. 2016b), and text messaging intervention (Wong et al. 2023).
Discussion
The present systematic review has only shown three self-management interventions to promote an active and healthy lifestyle that assessed fatigue outcomes in people with SCI: (1) the implementation of a self-management program (Kooijmans et al. 2017), (2) a motivational interviewing program (Nooijen et al. 2016b), and (3) a text messaging intervention (Wong et al. 2023). This number of self-management interventions for fatigue is quite small compared with the results of the recent scoping review of McIntyre et al. (2020) where 112 studies were included representing 102 unique self-management programs for people with SCI.
The self-management program (Healthy Active Behavioral Intervention in SCI [HABITS]), in the RCT by Kooijmans et al. (2013) was developed by combining two models of behavior change (the theory of planned behavior and the transtheoretical model of behavioral change). This study aimed to evaluate the effectiveness of this structured self-management intervention measuring physical activity, perceived behavior control, stages of exercise change, attitude, effects on perceived behavioral control (exercise self-efficacy, proactive coping), stages of change concerning exercise, and attitude toward exercise (Kooijmans et al. 2017). Sixty-four participants with chronic SCI and physically inactive were randomized to receive either five group meetings, six individual counselling sessions, and a book entitled “How to Stay Fit with SCI”, or only receiving information about active lifestyle by one group meeting and the same book (Kooijmans et al. 2017). Fatigue was part of the tertiary outcomes (along with secondary health conditions, social support, aerobic capacity measured during a wheelchair treadmill test, functional independence, mood, participation, quality of life, and body mass index) (Kooijmans et al. 2017). Overall, there were no significant differences observed between the HABITS intervention and control groups on the outcome measures, and thus the study did not support the effectiveness of the self-management intervention (Kooijmans et al. 2017).
In a similar series of RCTs, 45 participants with SCI were randomly assigned to receive a behavioral intervention based on 13 motivational interview sessions (beginning two months before and ending six months after discharge from inpatient rehabilitation) for promoting an active lifestyle, or no-intervention (Nooijen et al 2016a; Nooijen et al. 2016b; Nooijen et al. 2017). In this case, the behavioral intervention increased physical activity levels at the time of discharge and at 12 months after discharge (Nooijen et al 2016a), and elicited a behavioral change toward a more active lifestyle (Nooijen et al. 2016b). They found that proactive coping, exercise self-efficacy, pain disability, and helplessness (but not fatigue) were shown to be mediating effects of the increase in physical activity after this intervention (Nooijen et al. 2017). The differences in the results of physical activity levels of these studies may be related to the sample included. Participants of the study by Kooijmans et al. had chronic SCI (mean time since injury 22 years) SCI and were physically inactive, whereas the series of RCTs (Nooijen et al 2016a; Nooijen et al. 2016b; Nooijen et al. 2017) included participants with subacute SCI (mean time since injury 150 days) and were receiving regular rehabilitation, including handcycle training.
The lower-level study (pre-post) by Wong et al. found a moderate (but not significant) effect of a 12-week text messaging intervention on fatigue, sleep, and satisfaction with participation in social roles. However, there was no effect on patient activation (participation health management), nor for fatigue self-management in people with neurological conditions, including SCI (33%). This feasibility study also showed that this intervention had high acceptability, adherence, and satisfaction.
Self-Management Interventions in Other Clinical Populations
Further RCTs that test behavioral interventions on fatigue have been conducted in other clinical populations, such as multiple sclerosis. Bombardier et al. studied a motivational interviewing-based telephone counseling service in 130 people with multiple sclerosis. The treatment group reported significantly greater improvement in fatigue impact versus the wait-list control group (Bombardier et al. 2008). Additionally, telephone counselling telephone counseling (n = 31) was compared to self-directed physical activity education (n = 33) in 64 people with multiple sclerosis (Turner et al. 2016). The participants in the telephone counseling group reported significantly reduced fatigue (d = -0.70) versus participants of self-directed physical activity education (Turner et al. 2016). More clinically measurable improvements for fatigue were observed in the telephone counselling group (33.3% reduction) than in the self-directed physical activity education group (18.3% reduction) (Turner et al. 2016).
Pöttgen et al. (2018) also found that a self-management intervention significantly reduced fatigue in people with multiple sclerosis at week 12 (between-group mean difference 2.74 points; 95% CI, 1.16, 4.32; P = 0.0007; effect size d = 0.53) and sustained those improvements at week 24 (between-group mean difference 2.19 points; 95% CI, 0.57, 3.82; P = 0.0080). Though the mechanisms behind self-monitoring or self-management interventions improvements for fatigue in people with multiple sclerosis or SCI remain unclear, they are likely grounded in broader behavioral principles such as self-efficacy (Bandura 1977; Lorig & Holman 2003). This notion is partially supported by Wang et al. (2022) who found in a multiple regression analysis that behavioral variables such as outcome expectations (β = 0.287) and self-efficacy (β = 0.153) explained approximately 41% of the variance in predicting fatigue self-management in people with multiple sclerosis.
Conclusions
There is level 1b (from RCT: Kooijmans et al. 2017) that a 16-week self-management intervention to promote an active lifestyle (providing group meetings, individual counseling, and a book) shows a non-significant improvement in fatigue severity (FSS) in comparison with only providing information about active lifestyle by one group meeting and a book, in people physically inactive with chronic SCI.
There is level 1b (from one RCT: Nooijen et al. 2016) that 8-months of 13 face-to-face sessions of behavioral intervention promoting an active lifestyle (based on motivational interviewing) did not provide a direct effect on fatigue severity (FSS) in people with subacute SCI and manual wheelchair-dependency.
There is level 4 (from one pre-post: Wong et al. 2023) that a 12-week self-management text messaging intervention, based on the baseline activation level of each participant, non-significantly decreases fatigue (MFIS and PROMIS Fatigue) in people with disabilities (33% of them had SCI).
