Self-management: a systematic review of outcome measures adopted in self-management interventions for stroke

Figures & data

Table I.  Summary of included studies.

Author (years)Country in which study conducted	Sample*Mean age in years	Theoretical premise of intervention	Intervention
Allen et al. (2004) [48]	Other details regarding sample absent (n = 96)	Chronic care model [88].	Strategies to enhance post-stroke care and recovery (STEPS CARE)
USA			Regular telephone and home follow-up by a specialist nurse (ANP) for 6 months post-discharge to implement and review care plan agreed by multidisciplinary stroke specialist team (core team-General practitioner, Geriatrician, ANP, Physiotherapy. Occupational therapy, speech and language therapy, dietician, social work and psychology, as required)
Cadilhac et al. (2011) [47]	Stroke ≥3 months, >18 years old, English as a first language, living in community, no prior participation in Self-Management Programs.	None stated	Stroke-specific 8-week self-management programme (2.5 h per week). Health-care professional and trained lay co-led.
Australia	Recruited following discharge from acute or community care, or from stroke support clubs.
	Randomised to Stroke self-management program (SSMP) (n = 48) (56% female, *68)
	Or standard care (SC) (n = 48) (62% female, *71)
	Or Stanford Self-management program (generic) (n = 47) (60% female, *69)
Frank et al. (2000) [49]	Patients with stroke ≤24 months, cognitive impairment and aphasia excluded	Locus of control [89]	5 week, workbook-based intervention and relaxation tape
Scotland	Randomised to intervention (n = 20) (50% Male, *63.6) or usual care (n = 19) (53% Male, *64.3)	Self-efficacy [90]	Delivered by researcher
			Weeks 1 and 2 involved face-to-face contact, weeks 3–5 phone contact
			Measures taken at baseline, 1-month post-completion of workbook (9 weeks for control group)
Guidetti & Yterrberg (2011) [91]	Confirmed stroke, ability to follow instructions, need for self-care intervention and referral to one of three rehabilitation clinics. People with dementia excluded.	None stated	Client-centred self-care intervention (CCSCI)
Sweden			Delivered by Occupational Therapists with additional training in intervention
	Randomised to intervention (n = 19, 42% male, *66)
	Or
	Control (n = 21, 43% male, *69)
Huijbregts et al. (2008) [92]	Inclusion criteria-stroke ≥3 months, medically, physically and cognitively able to participate, able to dress and undress independently, active rehabilitation finished	Social Cognition Theory [59]	MOST (Moving on After Stroke) self-management program.
Canada	Sample given information on both programs and cost ($30 MOST, $20 Living With Stroke, LWS) then contacted research team with preference (able to request subsidy)		17 two hour, twice weekly, group based sessions (8 weeks) plus booster session 6 weeks post-completion.
	MOST (n = 18) (77% male, *71)		Discussion and exercise.
	LWS (n = 12) (58% male, 63*)		Delivered by 3 health-care professionals, a physiotherapy assistant and 3 volunteers
Huijbregts et al. (2009) [93]	Inclusion criteria- stroke, living in community, finished active rehabilitation.	Self-efficacy [59]	Telehealth (video-conferencing) delivery of a stroke self-management program, Moving on after stroke (T-MOST).
Canada	Exclusion criteria—Cognitive impairment and severe aphasia		Co-led by two trained health-care professionals at two different remote sites
	Intervention received briefing to ensure they understood self-management model.		9 weekly sessions, each session—1 h of discussion, 1 h of exercise to focus upon coping skills problem solving & goal setting
	T-MOST (n = 8, 50% male, *61.8)Waiting list control (n = 7, 37.5% male, *65.6)
Johnston et al. (2007) [50]	Sampling Frame- English speaking patients and their carers discharged following admission to 1 Hospital for acute stroke.	Cognitive behavioural Therapy theory	5 week, workbook-based intervention to enhance control cognitions, coping and recovery from disability
Scotland	Sample randomised to Intervention (n = 103, *68.96, 61% male)		Week 1, 2, and 5 involve face-to-face contact, week 3 and 4 phone contact
	Or
	Usual care control (n = 100, *68.79, 61% male)
Jones et al. (2009) [45]	Purposive sampling of medically stable participants discharged following first stroke (12 weeks-18 months post-stroke) (n = 10) (70% male, *61.5).	Social Cognition Theory [59] (self-efficacy as a predictor of behaviour change)	Four-week workbook-based intervention to enhance mastery, vicarious experience and feedback.
England	Participants with severe memory and language limitations, depression and emotionalism excluded.		Contact to introduce intervention and at each measurement point.
	Recruited from the registers of either an acute hospital stroke unit or community stroke team.
Kendall et al. (2007) [76]	Sampling frame—in-patient acute urban hospitals. 1st stroke ≤6 months.	Self-efficacy [59]	6 week Stanford Chronic Disease Self Management Program (CDSMP) plus 1 stroke-specific session (7 weeks total).
Australia	Excluded if unable to communicate sufficiently in English, or previous strokes/dementia, or lack of support person to attend course, or if discharge was not to their own (or family members’) home.		7 week intervention conducted between 3 and 6 month data collection points.
	Randomised to Intervention group (n = 58, 70.6% male, *66.58)		Both arms received usual care and rehabilitation
	Or Usual care control (n = 42, 62% male *66.36)
Ljungberg et al. (2001) [51]	Confirmed stroke, estimated rehabilitation time of 4 weeks, able to transfer from bed to chair with 1 person and communicate by telephone.	Orem’s Self-care theory [94]	Collaborative rehabilitation with patients and care-givers on neurology ward and then for 4 weeks in patients own home, followed by 5 2 h educational sessions 3 months post.
Sweden	Dementia and inability to swallow fluids, excluded.	Motor relearning programme [95]	Provided by Nurses, Nursing assistants, Occupational Therapists, Physiotherapist, Social welfare officer and Neurologist
	Non-randomised
	Intervention group (n = 32, *72, 44% male)
	Control group (n = 9, *72, 66% male)
Marsden et al. (2010) [44]	Randomised, assessor blind, cross-over, controlled trial.	None stated	“Community Living After Stroke for Survivors and Carers” (CLASSiC) programme
Australia	Community-dwelling, chronic stroke survivors (n = 25) and carers (n = 17), discharged from therapy and English speaking.		(weekly, 2 1/2 h, seven-week group programme combining physical activity, education, self-management principles and “healthy options”)
	Recruited via self or physician referral.		Delivered by physiotherapist, social worker, dietician, clinical nurse consultant, speech pathologist and OT
Sackley et al. (2006) [46]	Residents of 12 care homes in one area of England, with moderate-severe stroke related disability cluster randomised to Intervention (n = 63) (83% female, *88.6)	None stated	Occupational Therapy (OT) client-centred intervention to improve self-care among care home residents following stroke.
England	Or		Delivered by one OT over a period of 3 months in each home.
	Usual care (n = 55) (82% female, *86.3
Sit et al. (2007) [52]	Participants were >18 years, had a minor stroke, living in the community, independent in ADLs and cognitively able.	None stated	Community-based Stroke prevention programme. 8 weekly 2 h sessions delivered by 3 community nurses.
Hong Kong	Exclusion—hemorrhagic stroke, pending surgery, non-Cantonese speaking		Aimed to improve self-management for secondary Stroke prevention
	Non-randomised to intervention (n = 77) or usual care (n = 70)

Figure 1.  Summary of concepts used by studies (n = 13).

Table II.  COSMIN property scores in stroke populations of outcome measures used in stroke self-management interventions.

Measure (author, year) (additional measurement property studies in stroke populations)	Study(s) adopting Measure	No studies with stroke populations identified	Internal consistency	Reliability	Measurement error	Content validity	Structural validity	Hypothesis testing	Cross-wcultural validity	Criterion validity	Responsiveness
Activities-specific Balance Confidence scale (ABC) [96,97]	[92]	4	++	+++	+	+	++	++	–	+++	–
Assessment of Quality of Life (AQoL) [98,99]	[47]	2	+++	–	–	+	+++	+	–	++	–
(The) Barthel Index [100–104]	[48,50]	37	–	++	–	+	–	–	–	+	+
(The) Barthel Index (Raschmodelled) [105]	[91]	1	+++	–	+++	–	+++	+++	–	–	+++
(The) Barthel ADL Index [106,107]	[46]	12	+	–	+	+	–	++	–	–	+
Berg Balance Scale (BBS) [108–113]	[93]	16	++	+	+	+	–	++	–	++	+
Center for Epidemiologic Studies Depression Scale (CES-D) [114–117]	[48]	5	+++	++	–	+	–	+++	–	++	–
Quality from the patients perspective Questionnaire (CFPP) [118]	[51]	0	–	–	–	+	+	–	–	–	–
Chedoke McMaster Stroke Assessment (CMSA) [119,120]	[92,93]	2	–	++	–	++	–	++	–	–	++
Frenchay Activities Index (FAI) [101,121–127]	[91]	18	+	++	–	+	+++	–	–	++	++
Functional Independence Measure (FIM) [124,128–133]	[51,91,92]	31	++	+++	+	+	++	++	–	++	++
Geriatric depression Scale Short-from (GDS) [115,134,135]	[92,93]	3	++	++	–	+	+	+	–	++	++
Hospital Anxiety and Depression Scale (HADs) [136–138]	[45,49]	2	+	–	+	+	+	+++	–	–	–
Modified Rivermead Mobility Index (MRMI) [101,103,139–141]	[45,46]	13	+	+	–	+	–	+	–	–	+
Recovery Locus of control (RLoC) [142,143]	[45,50]	2	+	+++	–	+	++	++	–	–	++
Reintegration to Normal Living Index (RNL) [144–146]	[92,93]	9	++	+	–	+++	++	+	–	+	–
Rivermead Activities of Daily Living (RADL) [147–150]	[45]	5	–	+	–	–	–	+	–	+	–
Stoke Adapted Sickness Impact Profile (SA–SIP30) [151][124,152,153]	[92]	5	++	–	–	++++	++	+++	–	–	+++
Stroke Impact Scale version 2.0 (SIS) [154–156]	[91]	8	+	+	+	_	+	++	_	++	++
Subjective Index of Physical and Social Outcome (SIPSO) [157–159]	[45]	5	+++	+++	–	++++	+++	+	–	++	+
Stroke Self-efficacy Questionnaire (SSEQ) [160]	[45]	1	+	–	–	++++	+	+	–	+++	–
Stroke-Specific Quality of Life (SSQoL) [161,162]	[48,76]	3	+	–	–	++	+	++	–	++	++

Figure 2.  Percentage of studies with COSMIN quality rating (n = 21).

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