Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review

Abstract

Introduction

Fatigue is a pervasive symptom of chronic disease that often interferes with occupational performance. Our objective was to describe what is known about energy management education and occupation-related outcomes in adults with chronic diseases.

Methods

Seven electronic databases were searched for relevant literature published before August 2019. Eligible articles were full-text, available in English, and studied energy management education in adults with a chronic disease. The first author assessed article eligibility with validation from a second reviewer, extracted characteristics of included studies, and described them using descriptive statistics. A narrative synthesis of findings was conducted for each chronic disease population.

Results

Forty-four studies addressed eight different chronic disease populations. The most common program delivery format was face-to-face in a group setting (42%), 39% of programs were informed by a learning theory, and their median cumulative length was 8 hours. Positive outcomes were associated with a specific, group-based energy management program in people with multiple sclerosis. The evidence on other energy management programs and in other chronic disease populations was more limited and inconclusive.

Conclusions

Further research is needed to understand the impact of energy management education in chronic disease populations beyond multiple sclerosis, and its impact on occupational performance.

Keywords

Energy management fatigue adaptive pacing work simplification occupational therapy chronic disease

Introduction

Fatigue is one of the most common symptoms of illness; an estimated 5–7% of people who visit a primary healthcare provider present with fatigue as their primary complaint (Hamilton et al., 2010). Fatigue is defined as “an uncommon, abnormal or extreme whole bodily tiredness, disproportionate or unrelated to activity or exertion” (Piper, 1993: 285). It is a particularly prevalent symptom among populations with chronic or long-term illnesses. For example, 59–100% of people with cancer (Weis, 2011), 29–77% of post-stroke survivors (Acciarresi et al., 2014), 75% of people with multiple sclerosis (MS) (Braley and Chervin, 2010), 70% of people with advanced kidney disease (Murtagh et al., 2007), and 69–88% of people with heart failure (Fini and de Almeida Lopes Monteiro da Cruz, 2009) experience persistent and disabling fatigue. Across chronic disease populations, fatigue is a complex, nonspecific symptom that can have an array of multidimensional contributing factors (Chaudhuri and Behan, 2004). Effective pharmacological or medical treatments to alleviate fatigue are limited (Yancey et al., 2012). Of concern to occupational therapists, fatigue is often reported by patients as interfering with their occupational performance (Jones et al., 2016; Mandliya et al., 2016), which is “the ability to perceive, desire, recall, plan and carry out roles, routines, tasks and sub-tasks for the purpose of self-maintenance, productivity, leisure and rest in response to demands of the internal and/or external environment” (Ranka and Chapparo, 1997: 59). As the prevalence of chronic illness continues to increase globally (World Health Oganization, n.d.), identifying approaches to help people with fatigue optimize their occupational performance should be a high priority for occupational therapists.

Energy management education (EME) (also known as energy conservation or adaptive pacing) is an approach to fatigue management that teaches people to use occupation-focused strategies, such as prioritizing activities, pacing oneself, adopting energy-efficient body postures, or using energy-saving tools (Matuska et al., 2007), to reduce fatigue and improve occupational performance. Mathiowetz and colleagues (2001) assert that energy management education is specifically indicated when “fatigue interferes with occupational and/or role performance” (Mathiowetz et al., 2001: 450). The research that exists about EME and its effects on occupation or related outcomes in adults with chronic diseases has, however, not been comprehensively explored, apart from one systematic review in MS that has not been updated since 2013 (Blikman et al., 2013). Identifying and describing the literature on EME and occupational performance and related outcomes in adults with chronic diseases will help to identify research gaps, and inform occupational therapists seeking to engage in evidence-based practice with clients experiencing chronic fatigue. Accordingly, the purpose of this scoping review was to identify and describe the literature on energy management education and occupational performance or related outcomes in adults with chronic diseases.

Methods

We followed scoping review methodology as described by Arksey and O’Malley (2005) for this review. Scoping review methodology is used to summarize the extent, range, and nature of research activity in a research area, for the purpose of collating knowledge and/or identifying evidence gaps (Arksey and O’Malley, 2005). Arksey and O’Malley’s (2005) five iterative scoping review stages were implemented and are used to structure this paper. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews (PRISMA-ScR) (Tricco et al., 2018) was also followed to ensure optimal reporting (Appendix 1 online materials). PRISMA was chosen as it is a widely accepted international gold standard for reporting systematic reviews and meta-analysis.

Stage 1: identify the research question(s)

The primary research question of this review was: what is known about the impact of EME on occupational performance or related outcomes in adults with chronic diseases? Specifically, we sought to identify the chronic disease populations in which EME has been investigated; describe the characteristics of existing studies; identify the key characteristics of existing EME programs; and describe the reported findings on EME.

Stage 2: identify relevant studies

The primary author developed the search strategy with an experienced rehabilitation information specialist. The following list of search terms was used to identify literature pertaining to energy management education: energy management, energy conservation, fatigue management, energy saving, adaptive pacing, work simplification, and energy envelope. Search terms were also used to narrow the results to education-related intervention studies: education, training, program, course, and treatment. Where available, database-specific search limiters were also used to further narrow the results to intervention studies (for example comparative study, evaluation studies, multicenter study, and clinical trial for Medline). No search terms were applied to narrow the review population; rather, we kept the scope of the search broad at this stage to ensure relevant literature was not missed. A detailed example of the search strategy for Medline is included in Appendix 2.

All search terms were entered into the subject heading, title, abstract, and keyword fields in seven electronic literature databases (Medline, Embase, Pubmed, Cochrane database of systematic reviews, CENTRAL, CINAHL, and PsycInfo), to identify literature published up to August 2019. Search limits were placed on study population (adult only) and publication language (English only). The primary author also reviewed reference lists of seminal articles to ensure literature was not missed in the electronic search.

Stage 3: select studies

The information specialist imported the results from the electronic search into Endnote reference management software and removed duplicate articles. Filters were applied to eliminate extraneous articles that were captured due to conceptual overlap (such as environmental energy management). Two screeners (the first author and an MSc student, who first underwent training in applying the study eligibility criteria) independently reviewed a random sample (10%) of the results according to the study inclusion/exclusion criteria, to validate the screening process and refine study eligibility criteria. Any disagreements about study eligibility were resolved through discussion to reach consensus. The primary author then screened the remaining titles/abstracts and full-text articles to determine their eligibility. We used the following inclusion/exclusion criteria to select articles:

Inclusion criteria

Study participants were aged ≥18 years.

Study participants had a chronic disease (defined as a disease lasting >3 months, in accordance with the U.S. National Center for Health Statistics definition).

The primary focus of the intervention was energy management education (teaching strategies to manage energy expenditure during everyday activities).

The study sought to understand the impact of EME on occupational performance or related outcomes, including fatigue, fatigue impact, quality of life, and self-efficacy.

The article was available in English.

Exclusion criteria

The fatigue intervention included one or more other fatigue management approaches (for example cognitive-behavioral therapy, exercise) in addition to energy management education.

The article was not peer-reviewed.

The result was an abstract, conference proceeding, or review article.

Stage 4: chart the data

The authors collaboratively developed a Microsoft Excel data sheet to document and organize the study data from the eligible articles. The first author then independently extracted and charted the data. Data extracted were:

Publication characteristics (title, authors, year, journal);

Study characteristics (location, research question, research design, sample size, outcome measures);

Sample characteristics (clinical condition, mean age, gender; additional unique characteristics of the sample such as clinical setting, recruitment methods, age restrictions, functional status);

EME program characteristics (content, length, mode, format);

Major findings (quantitative or qualitative) relating to occupational performance or related outcomes (consistent with scoping review methodology (Arksey and O’Malley, 2005), no critical appraisal was undertaken).

Stage 5: collate, summarize, and report results

We described the characteristics of included articles, studies, and samples, using frequencies and percentages or means, where appropriate. We used a narrative synthesis approach (Popay et al., 2006) to summarize reported findings on EME and its effects on occupational performance-related outcomes within each chronic disease population. As the literature was particularly extensive on the MS population, findings in MS were further grouped according to EME program.

Results

The search strategy generated 8654 possible items. After we removed duplicates and screened articles for eligibility (Figure 1), we identified 44 primary articles that were eligible for the review.

Figure 1.

PRISMA flow diagram of study selection process.

Description of the literature

Eighteen of the 44 articles (41%) were published within the last 5 years (2014–2019) (Table 1). Just over half (n = 24) focused exclusively or primarily on the MS population. The remaining 20 articles focused on chronic fatigue syndrome (five studies), cancer (five studies), cardiac disease (three studies), arthritis (three studies), acquired brain injury (two studies), fibromyalgia (one study), and post-polio syndrome (one study). Of the 44 eligible studies, 28 measured the effects of EME on occupational performance or related outcomes (Table 2). The remaining studies described specific occupation-related goals and energy management strategies used in EME programs; evaluated the impact of EME design components on outcomes; identified client characteristics that moderate outcomes after EME; and captured client experiences of EME. Among the 28 efficacy studies, 11 were randomized controlled trials, 10 were pilot/feasibility studies, five were pre–post studies, two were single-case studies, and one was a secondary analysis. Thirteen assessed the impact of EME on occupational performance; other related outcomes that were investigated included fatigue (21 studies), mental health (16 studies), and fatigue impact (14 studies).

Table 1.

Characteristics of articles included in the review.

Disease group	First author	Year	Study objective	Design	Sample size	Additional sample characteristics	Mean age	% female
Acquired brain injury	Boehm	2015	To examine the effectiveness of delivering the “Managing Fatigue” program via telehealth for a 70-year-old man with post-stroke fatigue	Case study	1	Post stroke	71	0
Acquired brain injury	Raina	2016	To evaluate the feasibility of an RCT of an internet-based manualized intervention to teach individuals with TBI to manage fatigue	Pilot study	41	Mild to severe traumatic brain injury, >6 months post-injury	NR	45
Arthritis	Furst	1987	To evaluate an occupational therapy program for teaching energy conservation and joint protection to adults with rheumatoid arthritis	RCT	28	RA >1 year, not currently hospitalized	55	89
	Murphy	2010	To examine whether tailored activity pacing was more effective at reducing pain and fatigue than general activity pacing	RCT	42	Volunteers with knee or hip osteoarthritis	60	73
	McCormack	2018	To explore if the FAME-W energy management program could facilitate individuals with rheumatic diseases to manage fatigue in work	Pilot study	27	Under age 65 and employed	43	44
Cancer	Barsevick	2002	To examine the feasibility of conducting an energy conservation intervention for cancer treatment-related fatigue	Pilot study	80	Initiating chemotherapy or radiation therapy	NR	NR
	Barsevick	2004	To compare an energy conservation intervention with a control intervention that was similar in terms of time and attention	RCT	396	Initiating chemotherapy or radiation therapy	56	85
	Yuen	2006	To evaluate the effectiveness of energy conservation training to help post-therapy cancer survivors manage fatigue	Pilot study	12	Previously underwent radiation therapy	55	42
	Sadeghi	2016	To assess the impact of energy conservation strategies and health promotion in breast cancer survivors	RCT	135	Starting treatment for breast cancer	55.7	100
	Bruggeman-Everts	2017	To assess the effectiveness of activity pacing and e-mindfulness-based cognitive therapy in reducing fatigue severity and improving mental health in severely fatigued cancer survivors	RCT	167	Volunteer participants	56	59
Cardiac disease	Kim	2016	To examine the feasibility of an energy conservation + problem-solving therapy intervention delivered via telephone	Pilot study	18	>3 months post- cardiac arrest	53.2	44
	Norberg	2017	To describe clients’ and occupational therapists’ experiences of a home-based energy conservation program for clients with heart failure	Mixed methods	5 patients;2 occupational therapists	People with cardiac disease and occupational therapy program administrators	80	40
	Kim	2017	To describe fatigue-related problems of post-cardiac arrest adults and energy conservation strategies generated by an energy conservation + problem-solving intervention	Qualitative	18	(see Kim et al., 2016)	53.2	44
Chronic fatigue syndrome	McDermott	2004	To examine clinical outcomes from an occupational therapist-led program for patients with chronic fatigue syndrome	Quasi-experiment	98	Consecutive new CFS clinic patients	39	69
	White	2011	To assess the effectiveness and safety of CBT, graded exercise, activity pacing, and specialist healthcare for chronic fatigue syndrome (PACE trial)	RCT	641	Independent in most everyday activities	38	77
	Dougall	2014	To describe adverse events in the PACE trial and baseline characteristics associated with them	Long-term follow-up	641	See White et al.(2011)	See White et al. 2011	See White et al. (2011)
	Sharpe	2015	To assess additional treatments received after the PACE trial and long-term outcomes within and between original treatment groups	Long-term follow-up	481	See White et al. (2011)	39	76
	Friedberg	2016	To assess the efficacy of fatigue self-management for severe chronic fatigue syndrome	RCT	137	Aged 18–65	∼45	88
Fibromyalgia	Racine	2018	To assess the efficacy of 2 forms of activity pacing in patients with fibromyalgia syndrome	Pilot study	178	Tertiary care patients with fibromyalgia	NR	NR
Multiple sclerosis Multiple sclerosis (cont’d)	Mathiowetz	2001	To evaluate the efficacy of an energy conservation course on fatigue impact, self-efficacy, and quality of life for persons with MS	Pilot study	54	Community-dwelling volunteers	50	67
	Vanage	2003	To evaluate the effects of an energy conservation course on fatigue impact of persons with MS whose symptoms cause significant disability	Quasi-experiment	37	Receiving community-based rehab and significant disability	56	81
	Finlayson	2005	To pilot test a face-to-face group energy conservation program delivered by group teleconference to people with MS	Pilot study	29	Community-dwelling volunteers	47	83
	Mathiowetz	2005	To assess the short-term efficacy and effectiveness of a 6-week energy conservation course on fatigue impact, quality of life, and self-efficacy for people with MS	RCT	169	Community-dwelling volunteers	48	83
	Lamb	2005	To examine differences in outcomes of individuals with MS who attended all sessions of an energy conservation program compared to people who missed a session and received a self-study module instead	Subgroup analysis	92	See Mathiowetz et al.(2005)	48	84
	Mathiowetz	2006	To assess how people with MS perceive an energy conservation course	Follow-up survey	140	See Mathiowetz et al. (2005)	49	83
	Mathiowetz	2007	To report the 1-year follow-up to an RCT examining the effect of energy conservation on fatigue and participation in people with MS	Long-term follow-up	131	See Mathiowetz et al. (2005)	48	83
	Matuska	2007	To describe the use and perceived effectiveness of energy conservation strategies by people with MS after an energy conservation course	Follow-up survey	123	See Mathiowetz et al. (2005)	49	82
	Holberg	2007	To examine the factors influencing the implementation and continued use of energy conservation strategies among people with MS	Qualitative	8	See Finlayson (2005)	46	88
	Finlayson	2007	To evaluate the influence of cognitive abilities on outcomes of people with MS who participated in a 6-week energy conservation program	Subgroup analysis	169	See Mathiowetz (2005)	48	83
	Sauter	2008	To evaluate the short-term and long-term effects of a German-language adaptation of the “Managing Fatigue” program in MS	Quasi-experiment	32	Attending MS outpatient clinic	NR	NR
	Ghahari	2009	To develop and evaluate the effectiveness of an online fatigue self-management program	Pilot study	5	Community-dwelling volunteers with internet access	NR	NR
	Ghahari	2010	To evaluate an online fatigue self-management program in adults with chronic neurological conditions	RCT	95	Community-dwelling volunteers with internet access	50	81
	Ghahari	2012	To evaluate the effectiveness of a face-to-face and an online fatigue self-management program and to compare these to two control groups in adults with neurological conditions reporting extreme fatigue	Quasi-experiment	115	Community-dwelling volunteers with internet access	NR	NR
	Finlayson	2011	To test the efficacy and effectiveness of a group-based, teleconference-delivered fatigue management program for people with MS	RCT	190	Community-dwelling volunteers	56	79
	Preissner	2012	To determine whether age, gender, work, or impairment moderated fatigue management program outcomes for people with MS	Subgroup analysis	181	See Finlayson et al. (2011)	56	79
	Finlayson	2013	To examine whether 6 chronic health conditions moderated the effectiveness of a teleconference-delivered fatigue self-management program for people with MS	Subgroup analysis	181	See Finlayson et al. (2011)	56	79
	García Jalón	2013	To develop and test the feasibility of an energy conservation program to manage fatigue in MS	Pilot study	23	Convenience sample of community-dwelling people with MS	NR	70
	Asano	2015	To describe goals set by people with MS after a teleconference-delivered fatigue management program and evaluate goal attainment over time	Follow-up survey	81	See Finlayson et al. (2011)	57	84
	Blikman	2017	To investigate the effectiveness of an individual energy conservation management intervention on fatigue and participation in persons with primary MS-related fatigue	RCT	76	18–70 years old; ambulatory	47.2	71
	Van Heest	2017	To assess the impact of a one-to-one fatigue management course on fatigue, self-efficacy, quality of life, and energy conservation behaviors	Quasi-experiment	49	Any chronic condition; moderate to severe fatigue	56.4	71
	Akbar	2018	To determine whether MS INFoRm, a self-directed fatigue management resource for individuals with MS, was worth further rigorous evaluation	Mixed methods	35	Under age 65 with access to a computer	49	77
	Pétrin	2018	To understand participants’ experiences with a self-guided fatigue management resource (MS INFoRm), and the extent to which they found its contents relevant and useful to their daily lives	Qualitative	23	Under age 65 with access to a computer	49	78
	Blikman	2019	To investigate whether demographic, disease-related, or personal baseline determinants predict a positive response to energy conservation management	Secondary analysis	69	Ambulatory patients under aged 70	NR	NR
Post-polio sequelae	Young	1991	To describe the functional outcomes of an occupational therapy education program to treat post-polio sequelae	Quasi-experiment	35	Outpatient OT people	55	66

NR: not reported; RCT: randomized controlled trial; TBI: traumatic brain injury; CBT: cognitive-behavioral therapy; MS: multiple sclerosis; RA: rheumatoid arthritis;CFS: chronic fatigue syndrome

Table 2.

Reported findings on occupation and related outcomes associated with energy management education (EME).

Population	Study citation	Year	Control used	Reported outcomes associated with energy management education
					Fatigue	Fatigue impact				Quality of life							Self-efficacy	Knowledge	Strategy use
				Occupational performance	Fatigue	Total	Physical	Cognitive	Psychosocial	Mental health	Phys. function	Role– physical	Bodily pain	General health	Social function	Role– emotional	Self-efficacy	Knowledge	Strategy use
Multiple sclerosis	Mathiowetz	2001	Active control		+	+	+	+	+	+	–	–	–	–	+	–	+		+
	Vanage	2003	Active control			+	+	+	+
	Mathiowetz	2005	Wait-list		+		+	+	+	+	–	+	–	–	–	–	+	M	+
	Finlayson	2005	None		M	+	+	+	+	–	–	–	+	+	–	–	–
	Sauter	2008	None	–	–	+	+	+	–	+
	Ghahari	2009	None	+		+				+
	Ghahari	2010	Standard care	–		–	–	–	–	+	+	+	+	+	+	+	–
	Finlayson	2011	Wait-list		–		+	+	+	–	–	+	–	–	–	–	+
	García Jalón	2013	Active control		–	–	–	+	–	–							–
	Asano	2015	None	+
	Blikman	2017	Active control	–	–	–	–	–	–	–	–	–	–	–	–	–
	Van Heest	2017	None		+					+	+	+	+	+	+	–	+		+
	Akbar	2018	None			+	–	+	+								+	+	+
Cancer	Barsevick	2002	Standard care		+
	Barsevick	2004	Support group	–	+														+
	Yuen	2006	None		M
	Sadeghi	2017	Standard care		+					+
	Bruggeman	2017	Active control		+
Cardiac disease	Kim	2017	None	M						–									+
Cardiac disease	Norberg	2017	None	+	+	+	+	+
Arthritis	Furst	1987	Standard care	–	–					–								–	+
Arthritis	McCormack	2018	None		+					+							+
Post-polio	Young	1991	None		+													+	+
Acquired brain injury	Boehm	2015	None	M		+	+	+	+
Acquired brain injury	Raina	2016	Active control		+	+	+	+	–
Chronic fatigue syndrome	McDermott	2004	None	+	+
	White	2011	Standard care	–	–					–	–
	Friedberg	2016	Standard care	–	+					M	–

+: favors EME; –: no difference between EME and control; M: mixed evidence; blank: not assessed

Characteristics of energy management education programs

Twenty-six different EME programs were identified in the 44 studies (Table 3). The group-based “Managing Fatigue: A Six-Week Course in Energy Conservation” (Packer et al., 1995) was used in eight (18%) studies, while adaptations of the program including a teleconference-based program, an internet-based program, a program for individuals with higher levels of disability, and 1:1-based programs were used in 14 studies (32%). Across the 22 remaining studies, 18 different EME programs were identified. The median cumulative length of the programs was 8 hours (range 1–27). Half of the programs relied predominantly on a face-to-face delivery model, while the remaining half used telephone delivery (three programs), computer delivery (two programs), and mixed modalities (four programs). Eight programs were delivered by a provider on a 1:1 basis, while seven were delivered in groups, and three used a self-guided model. In total, 42% of the EME programs mentioned a theoretical framework used to inform program design, and 26% incorporated a goal-focused approach to EME.

Table 3.

Design characteristics of energy management education programs described in the literature.

	Program authors	Supporting theory	Delivery model	Format	Sessions	Total length	Goal focus
“Managing fatigue” + adaptations	Packer et al.(original)	Self-efficacy theory	Face-to-face	Group (n = 8–10)	6 sessions × 1.5-2hrs	9 hrs	N
	Sauter et al.		Face-to-face	Group (n = 6–8)	6 sessions × 2 hrs	12 hrs	N
	Vanage et al.		Face-to-face	Group (n = 6–8)	8 sessions × 1 hr	8 hrs	N
	Van Heest et al.		Face-to-face	1:1	6 sessions × 1.5hrs	9 hrs	N
	Blikman et al.		Face-to-face	1:1	12 sessions	Not stated	N
	Finlayson et al.		Teleconference	Group	7 sessions × 45 mins	5hrs 15 mins	N
	Ghahari et al.		Computer-based	Self-guided + 1:1	7 sessions × 1 hr	7 hrs	N
	García Jalón et al.		Face-to-face	Group	5 sessions × 2 hrs	10 hrs	N
Other programs	Akbar et al.	Self-efficacy theory	Computer-based	Self-guided	NR	NR	Y
		NR	Face-to-face	1:1	1 session × 1 hr	1hr	N
	Barsevick et al.	Common-sense model of illness	Telephone	1:1	3 sessions (30, 15, 15 mins)	1hr	N
	Bruggeman-Everts et al.	NR	Telephone	Self-guided + 1:1	9 weeks × 3 hrs	27 hrs	N
	Friedberg et al.	NR	Audio CDs & booklets	Self-guided	12 weeks	NR	N
	Furst et al.	NR	Face-to-face	Group	6 sessions × 1.5hrs	9 hrs	N
	Kim et al.	Problem-solving therapy	Telephone	1:1	Up to 8 sessions × 45 mins	6 hrs	Y
	McCormack et al.	Self-management principles	Face-to-face	Group	4 weeks × 2 hrs	8 hrs	Y
	McDermott et al.	NR	Face-to-face	Group	6 sessions × 2 hrs	12 hrs	Y
	Murphy et al.	NR	Face-to-face	1:1	2 weeks × 45 mins	1.5 hrs	N
	Norberg et al.	Occupational therapy intervention process	Tailored for each client	1:1	Tailored for each client	Varied	N
	Racine et al.	Operant learning	Face-to-face	Group (n = 10–12)	10 weeks × 2 hrs	20 hrs	N
		NR	Face-to-face	Group (n = 10–12)	10 weeks × 2 hrs	20 hrs	N
	Raina et al.	Problem-solving therapy	Computer-based	1:1	12 sessions × 30mins	6 hrs	Y
	Sadeghi et al.	NR	Face-to-face	Group (n = 6–8)	5 sessions × 1.5 hrs	7.5 hrs	N
	White et al.	NR	Face-to-face	1:1	12–15 sessions × 50mins	10–12 hrs	N
	Young	NR	Face-to-face	Group (3–4)	3–4 sessions × 2 hrs	6–8 hrs	N
	Yuen et al.	NR	Face-to-face + telephone	1:1	1 session × 1–2 hrs + 3 follow-up calls	2–3 hrs	N

NR: not reported

Findings regarding occupational performance and related outcomes

Multiple sclerosis

The “Managing Fatigue” program

Reported findings on the “Managing Fatigue” program in people with MS have been generally positive. A pilot randomized controlled trial (RCT) found that the program was associated with improvements in fatigue, fatigue impact, and some quality of life domains (Mathiowetz et al., 2001) (Table 3). A large RCT confirmed these findings, and also found that the program was associated with improvements in self-efficacy. The improvements associated with EME were maintained at 6 weeks (Mathiowetz et al., 2005) and 1 year post intervention (Mathiowetz et al., 2007). Participants’ baseline cognitive status was not found to influence fatigue outcomes (Finlayson et al., 2007), and participants who missed ≥1 treatment session and received self-study modules instead experienced comparable outcomes to people who attended all sessions (Lamb et al., 2005). The most useful EME strategies taught in the program according to participants were taking rest breaks, delegating tasks, and modifying priorities; however, all 14 strategies covered in the program were newly adopted by more than half of the participants (Matuska et al., 2007). Overall, the most valued components of the program were concepts such as budgeting and banking energy and the social aspect of the group-based format, while less-valued components were completing homework assignments, and topics such as activity stations and ergonomics (Mathiowetz and Busch, 2006).

Teleconference-based adaptation

Reported findings on a teleconference-based version of the “Managing Fatigue” program have been mixed. A pilot study found that the program was associated with significant improvements in fatigue impact, fatigue severity, and some domains of quality of life (Finlayson, 2005). An RCT confirmed the improvements observed in fatigue impact, which were found to be maintained at 6 months post-intervention. However, the RCT found no changes in self-efficacy, fatigue severity, or quality of life associated with the teleconference-based program (Finlayson et al., 2011). Participants were found to achieve approximately half of the occupational performance goals they set at the beginning of the study, with short-term goals more frequently being achieved than mid-term or long-term goals (Asano et al., 2015). Older adults were found to experience less improvement in fatigue impact or self-efficacy after the program, and those with a lower baseline functional status experienced less improvement in mental health (Finlayson et al., 2012). Comorbidities such as diabetes and rheumatoid arthritis also moderated outcomes (Finlayson et al., 2013). In qualitative interviews, participants reported that the program had changed their perspective on fatigue and enabled them to feel more in control of their lives (Holberg and Finlayson, 2007); however, they reported that factors such as disease progression, level of disability, and predictability of fatigue affected their use of EME strategies.

Internet-based adaptation

Reported findings on an internet-based version of the “Managing Fatigue” program have been largely negative. A small pilot study found the program was associated with improvements in occupational performance, fatigue impact, and quality of life (Ghahari et al., 2009). However, an RCT involving participants who had various progressive neurological conditions found that the internet-based adaptation had no effect on occupational performance, fatigue impact, or quality of life (Ghahari et al., 2010). When the data on the online adaptation was compared post-hoc to a non-equivalent group who received the original “Managing Fatigue” program, the original program was associated with greater improvements in fatigue impact (Ghahari and Packer, 2012).

One-to-one adaptations

Reported findings on 1:1 adaptations of the “Managing Fatigue” program have been mixed. A pre–post study involving participants who predominantly had MS found that a 1:1 “Managing Fatigue” program adaptation was associated with improvements in fatigue and self-efficacy (Van Heest et al., 2017). However, an RCT of a different 1:1 “Managing Fatigue” adaptation found no effect on occupational participation or fatigue (Blikman et al., 2017). Participants who had a less negative perception of fatigue, perceived fewer disease benefits, and perceived a higher discrepancy in social support were more likely to respond to the EME intervention in the RCT (Blikman et al., 2019).

Other adaptations

An RCT of the “Managing Fatigue” program adapted for people with a lower functional status found the program was associated with improvements in fatigue impact, and gains were maintained at 8 weeks post-intervention (Vanage et al., 2003). Meanwhile, a pre–post study that examined a German-language adaptation of the “Managing Fatigue” program found that it was associated with improvements in fatigue impact at 3 months and 9 months post-intervention, but fatigue was unaffected (Sauter et al., 2008).

Other EME programs in MS

Findings on other EME programs beyond “Managing Fatigue” in MS have been mixed. A mixed-methods study found that a self-guided, computer-based EME program (MSInform) was associated with improved fatigue impact and self-efficacy (Akbar et al., 2018). In qualitative interviews, participants reported experiencing a shift in their knowledge, expectations, and behaviors related to fatigue management after completing the program, which led to increased self-confidence and improved quality of life (Pétrin et al., 2018). However, a pilot RCT examining a different six-session, group-based EME program that was informed by the “Managing Fatigue” program and several other EME programs reported no effect on fatigue, self-efficacy, or depression symptoms (García Jalón et al., 2013).

Chronic fatigue syndrome

Reported findings on EME in people with chronic fatigue syndrome have been mixed. A large RCT comparing an extensive 1:1 EME program administered by an occupational therapist with cognitive-behavioral therapy (CBT), graded exercise (GET), and usual care (UC) reported that EME had no effect on occupational performance, fatigue, physical performance, or mental health (White et al., 2011). In a follow-up study, people allocated to EME or standard care were reportedly more likely to experience a decline in physical functioning compared to the CBT and GET participants (Dougall et al., 2014). However, a pre–post study of a six-session, group-based EME program in 98 people with chronic fatigue syndrome (CFS) reported that 56% of program participants underwent work training or acquired new full-time, part-time, or volunteer work at 18 months post-intervention, while 19% continued with their previous employment (McDermott et al., 2004). Another RCT conducted with participants who had extensive disability at baseline found that two versions of a self-guided EME program (a “high tech” and “low-tech” version) were both associated with reductions in fatigue and depression symptoms; however, self-care independence, activity levels, and anxiety were unaffected (Friedberg et al., 2016).

Cancer

Findings on EME in people with cancer have been mixed. Two RCTs that examined extensive EME programs both reported improvements in fatigue associated with EME (Bruggeman-Everts et al., 2017; Sadeghi et al., 2016). The first program used a partially self-guided format that was administered over 9 weeks with support from a physiotherapist (Bruggeman-Everts et al., 2017), while the second used a group-based format that took place over five 90-minute sessions (Sadeghi et al., 2016). A pilot study on another EME program administered over three brief telephone sessions similarly reported positive effects on fatigue (Barsevick et al., 2002). However, a large RCT examining the same program did not find it to be associated with clinically meaningful improvements in fatigue or occupational performance (Barsevick et al., 2004), while another pilot study that examined a brief, home-based EME program with cancer survivors similarly reported that the majority of fatigue domains were unaffected by EME (Yuen et al., 2006).

Cardiac disease

Few studies have investigated EME in people with cardiac diseases. A small pilot study of an EME program that used an individualized, telephone-based, goal-focused, problem-solving approach found that it was associated with improvements in fatigue impact, fatigue, and occupational performance in cardiac arrest survivors (Kim et al., 2016). Planning ahead, pacing oneself, and delegating activities were the most common energy management strategies used by participants, while the most common goal activities were household tasks, leisure activities, and grocery shopping (Kim et al., 2017). Meanwhile, a small pilot study of a different, 1:1 EME program found that both fatigue and mental health outcomes were mixed (Norberg, 2017).

Acquired brain injury

Few studies have investigated EME in people with acquired brain injury. A case study of a 1:1, teleconference-based adaptation of the “Managing Fatigue” program in a participant living post stroke found the program was associated with a decrease in multiple domains of fatigue impact, but did not improve occupational performance (Boehm et al., 2015). Meanwhile, a pilot RCT of an internet-based EME program that used a problem-solving therapy approach found the program was associated with improvements in fatigue and fatigue impact in people with an acquired brain injury (Raina et al., 2016).

Arthritis

Few studies have investigated EME in people with arthritis. A pilot study that compared a group-based EME program to usual occupational therapy care reported that the EME program was associated with increases in physical activity levels, and balance between rest and activity, at 3 months post-intervention. However, no differences were reported in other study outcomes such as pain, fatigue, psychosocial adjustment to illness, knowledge, or independence in activities of daily living (Furst et al., 1987). A pre–post study of a group-based program focused on energy management at work in individuals with rheumatoid arthritis (RA) found that participants were more able to meet work demands and had reduced symptoms (for example fatigue, pain, depression) at 3 months post-intervention (McCormack et al., 2018). An RCT with 32 osteoarthritis patients that compared a tailored EME program to a generalized EME program found the tailored intervention to be associated with less fatigue interference at a 10-week follow-up assessment (Murphy et al., 2010).

Fibromyalgia

One study investigated EME in people with fibromyalgia. An RCT compared a traditional energy management approach and an approach that used learning principles that were operant to each other and to a control condition. Neither program was associated with reduced fatigue or pain compared to the control group, but both programs were found to improved sleep quality, physical function, and pacing activity (Racine et al., 2018). The operant learning condition was reportedly associated with greater improvements in fatigue interference and psychological function (Racine et al., 2018).

Post-polio syndrome

One study investigated EME in people with post-polio syndrome. A pre–post study investigated the effects of a group-based EME program in 35 people with post-polio syndrome, and reported improvements in fatigue associated with the program (Young, 1991).

Discussion and implications

Our study is the first to comprehensively identify and describe the literature on EME and occupational performance or related outcomes in adults with chronic diseases. EME has been studied in eight different chronic disease populations, including MS, cancer, CFS, cardiac disease, arthritis, acquired brain injury, fibromyalgia, and post-polio syndrome. The literature was most extensive on the six-session, group-based “Managing Fatigue” program (Packer et al., 1995) in MS, where studies including RCTs suggested positive impacts on outcomes related to occupational performance, such as fatigue impact and self-efficacy (Finlayson et al., 2011; Mathiowetz et al., 2005). Participants of this program reported that the energy management strategies they learned were novel and effective (Mathiowetz and Busch, 2006; Matuska et al., 2007), and that other aspects of the program, such as making social connections, were valuable (Mathiowetz and Busch, 2006). However, the evidence on EME for other programs and chronic disease populations was found to be more limited, and often described mixed or inconclusive findings. There were also few studies that directly investigated the effects of EME on occupational performance.

The lack of robust research on EME outside of MS is surprising, given the prevalence of fatigue in many chronic diseases populations (Acciarresi et al., 2014; Fini and de Almeida Lopes Monteiro da Cruz, 2009; Weis, 2011) and the need for evidence-based interventions to improve fatigue management. In some populations (for example arthritis, post-polio, cardiac disease), although preliminary findings appeared to be promising, a lack of RCTs limits the conclusions that can be drawn about the efficacy of the approach. In other populations (for example cancer and CFS), although large RCTs have been conducted, they had potential methodological limitations that might minimize their validity. For example, in cancer, an RCT that reported EME had limited effects on fatigue and physical function (Barsevick et al., 2004) used a very brief EME program, which might have provided insufficient education to achieve positive outcomes. In CFS, a large RCT showed no effect of an extensive, individually delivered EME program on occupational performance, fatigue, physical performance, or mental health (White et al., 2011), but the validity of this trial and its conclusions have been questioned due to several methodological concerns since its publication (Jason, 2017; Wilshire et al., 2017), including concerns with the activity pacing intervention (Jason, 2017). We also found no studies (preliminary or other) on EME in other chronic disease populations known to have a high burden of fatigue, such as chronic kidney disease (Murtagh et al., 2007) and chronic obstructive pulmonary disease (Baltzan et al., 2011). Collectively, this review highlights the need for more well-designed primary studies about EME in adults with chronic diseases, to support occupational therapists seeking to engage in evidence-based practice in this area.

The limited evidence addressing the impact of EME on occupational performance was surprising, given that EME has been described as an intervention with a specific focus on occupation and role participation (Mathiowetz et al., 2001). While changes in occupational performance components such as fatigue might translate to improved occupational performance, reduced fatigue might not affect occupational performance if the fatigue management strategies learned are not applicable to the patient’s top-priority occupations. We therefore recommend that more studies are conducted to examine the impact of EME on occupational performance. We also found that available evidence on EME and occupational performance was mixed, with more studies reporting negative than positive findings. We question, as others have (Asano et al., 2015; Kim et al., 2017; Raina et al., 2016), whether a goal-focused approach to EME might maximize its impact on occupational performance. In the broader rehabilitation literature, goal-based, problem-solving interventions are used to improve occupational performance in diverse clinical populations (Dawson et al., 2009; Polatajko et al., 2012; Smits-Engelsman et al., 2013). It is suggested they are effective in part due to their individualized, client-centered approach, and use of techniques that promote self-management and independence (Dawson et al., 2017). However, we found that less than one-third of the EME programs identified in this review used a goal-based or problem-solving approach. Such approaches to EME might be optimal for providing individualized energy management strategies that address idiosyncratic occupations and contexts, and for providing methods for problem-solving around future goals. We therefore recommend that future EME research continues to explore the potential of goal-based, problem-solving approaches, and investigate their impact on occupational performance relative to traditional approaches.

Overall, there was extensive variability in the 26 EME programs used across the 44 studies, which complicates interpretation of the evidence across studies and populations. Some program differences, such as formats or delivery modes, could reflect population-specific needs and contexts, and there does not appear to be a consensus about which format or modality is generally most effective in the general health education literature (Hoddinott et al., 2010; Wilson, 1997). Rather, specific formats can each have strengths and weaknesses. For example, 1:1 formats more readily allow for intervention tailoring (Noar et al., 2007), while group formats provide an opportunity for social interaction and learning (Hoddinott et al., 2010). Similarly, while face-to-face programs can enable participants to receive direct social support, tele-based formats and e-formats can be more accessible and convenient for patients (Polinski et al., 2016). However, across formats and modalities, behavior-based interventions should always be based on sound learning and design theory, since those lacking a theoretical framework may omit components and processes that are central to behavior change, and therefore fail to optimize their effectiveness (Michie and Abraham, 2004). In total, we found that only 39% of the EME programs in this review identified a theory that guided intervention development, which suggests this as an area for future improvement in EME research that could help to maximize its efficacy. We also observed a wide range of cumulative program lengths, ranging from 1 hour to 27 hours, which could reflect the lack of theory-based design leading to wide differences in dosing between studies. While inadequate dosing might mean missing or incomplete elements of education and skills training, excessive dosing might limit feasibility and result in the overuse of resources. We therefore recommend that future EME studies carefully consider learning and design theory to identify the essential components of an EME intervention, in order to maximize efficacy and efficiency.

The strengths of this review include the comprehensive literature search that was conducted by trained professionals; the broad examination of the evidence on EME across clinical populations; and the systematic approach used to locate, select, and synthesize the literature. Its limitations include the exclusion of non-English studies, which may limit the generalizability of the findings; limitations inherent to a scoping review (for example the lack of a systematic evaluation of evidence quality), which may mean that quality-based gaps in the evidence were not identified; and the use of only one data extractor, which may increase the likelihood of data extraction errors.

Conclusions

Multiple studies support the “Managing Fatigue” group EME program as an effective intervention for improving outcomes related to occupation in the MS population. Preliminary evidence on EME is also promising in acquired brain injury, post-polio syndrome, and cardiac disease, but further robust research is needed to confirm these findings. Evidence on EME is conflicting in cancer and CFS, signifying a need for further, well-designed studies. Investigation into EME in other chronic disease populations with a high burden of fatigue, such as COPD and kidney disease, is also warranted. Future EME studies should aim to understand its impact on occupational performance, and should use programs that are theory-based.

Key findings

Energy management education has been found to improve outcomes in several studies in multiple sclerosis.

Beyond multiple sclerosis, the evidence on energy management is more limited and inconclusive.

There is currently limited evidence demonstrating the effects of energy management education on occupational performance.

What this study has added

This study has comprehensively synthesized the evidence on energy management education in adults with chronic diseases, and has identified the need for more robust primary research studies in populations beyond multiple sclerosis.

Supplemental Material

BJO904327 Supplemental Material1 - Supplemental material for Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review

Supplemental material, BJO904327 Supplemental Material1 for Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review by Janine F Farragher, Sarbjit V Jassal, Sara McEwen and Helene J Polatajko in British Journal of Occupational Therapy

Supplemental Material

BJO904327 Supplemental Material2 - Supplemental material for Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review

Supplemental material, BJO904327 Supplemental Material2 for Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review by Janine F Farragher, Sarbjit V Jassal, Sara McEwen and Helene J Polatajko in British Journal of Occupational Therapy

Footnotes

Research ethics

Ethics approval was not required for this study as it is a scoping review that involves no participants.

Consent

Informed consent was not relevant as this is a scoping review that involves no participants.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: Janine F Farragher received financial support via a Vanier Canada Graduate Scholarship and a Kidney Foundation of Canada Allied Health Doctoral Fellowship. No other authors received financial support for the research, authorship, or publication of this article.

Contributorship

All authors contributed to formulating the research question and designing the methodology for the project. Janine F Farragher carried out the literature search, article selection, data extraction, and synthesis of results. All authors contributed to interpreting the data. Janine F Farragher wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved the final version.

ORCID iD

Janine F Farragher

Supplementary material

Supplemental material for this article is available online.

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