Needs and treatment options in chronic traumatic brain injury: A feasibility trial of a community-based intervention

Figures & data

Table 1. All measures used at baseline (T1) and outcome (T2) assessments

	Instruments	Purpose	T1	Session 8	T2 & T3
Baseline data	Baseline form	Collect data on demographics and comorbid illnesses	x
	CVLT-II (Delis, Kramer, Kaplan, & Ober, 2000)	Evaluate verbal learning and memory	x
	TMT 1–5 and CWIT 1–4^1 (Delis, Kaplan, & Kramer, 2001)	Evaluate processing speed, mental flexibility and inhibition	x
	Coding & Symbol Search^2 (Wechsler, 2008)	Evaluate processing speed	x
	Similarities, Vocabulary, Matrix Reasoning, Block Design^2 (Wechsler, 2008)	Provide an IQ-estimate, evaluate verbal and non-verbal cognition	x
	BRIEF-A, Self-report Form (Roth, Isquith, & Gioia, 2005)	Self-reported executive dysfunction in everyday life	x
Participant outcome measures	RPQ (King, Crawford, Wenden, Moss, & Wade, 1995)	Self-reported TBI symptoms	x		x
	PHQ-9 (Kroenke, Spitzer, & Williams, 2001)	Self-reported depressive symptoms	x		x
	SF-36 (Ware, Sherbourne, & The, 1992)	Self-reported health-related quality of life	x		x
	PCRS, Patient Form (Prigatano et al., 1986)	Self-reported functional competency in daily activities	x		x
	PART-O (Whiteneck et al., 2011)	Self-reported participation	x		x
	NPCS, Clinician Version (Turner-Stokes & Siegert, 2012)	Semi-structured interview of health care services provided, and clinician evaluated needs for services	x		x
	GOSE (Jennett & Bond, 1975)	Semi-structured interview of global outcome after brain injury	x		x
	Target Outcome severity (ordinal scale from 0: “not at all”—4: “severe”)	Three TBI-related activity problems currently experienced by the participant, self-reported in open question form	x		x
	GAS (Malec, 1999)	Goal attainment at end of intervention		x
	Acceptability-Scale (Winter et al., 2016), 10-item Participant Form (ordinal scale from 0: “not at all” to 4: “extremely”)	Participant-reported acceptability at end of intervention		x
	Acceptability-Scale (Winter et al., 2016), 17-item Therapist Form, (ordinal scale from 0: “not at all” to 4: “extremely”)	Therapist-reported acceptability for participant		x
Family member outcome measures	PCRS, Relative Form (Prigatano et al., 1986)	Informant-reported functional competency in daily activities	x		x
	BRIEF-A, Informant Form (Roth et al., 2005)	Informant-reported executive dysfunction in everyday life	x
	PHQ-9 (Kroenke et al., 2001)	Self-reported depressive symptoms	x		x
	Caregiver Burden Scale (Elmståhl, Malmberg, & Annerstedt, 1996)	Self-reported caregiver burden	x		x
	Target Outcome severity, Informant reported	Three TBI-related activity problems reported by family member	x		x
	Target Outcome severity, Informant scored	Family member’s severity rating of participant’s Target Outcomes	x		x
	Acceptability-scale (Winter et al., 2016), 10-item Family Member Form (ordinal scale from 0: “not at all” to 4: “extremely”)	Family member reported acceptability at end of intervention		x
	Acceptability-Scale (Winter et al., 2016), 17-item Therapist Form	Therapist-reported acceptability for family member		x

¹Delis–Kaplan Executive Function System (D-KEFS), ² Wechsler Adult Intelligence Scale, Fourth Edition (WAIS-IV). BRIEF-A = Behavior Rating Inventory of Executive Functioning-Adult version, CVLT-II = California Verbal Learning Test-II, CWIT = Color Word Interference Tests, GAS = Goal Attainment Scaling, GOSE = Glasgow Outcome Scale-Extended, NPCS = Needs and Provision Complexity Scale, PART-O = Participant Assessment with Recombined Tools-Objective, PCRS = Patient Competency Rating Scale, PHQ-9 = Patient Health Questionnaire, RPQ = Rivermead Post-Concussion Symptoms Questionnaire, SF-36 = The Medical Outcomes Short Form-36, TMT = Trail Making Test.

Figure 1. Overview of the intervention sessions

Table 2. Baseline characteristics of six participants

No.	GOSE score	Problem areas identified on the GOSE	Neuropsychological functioning	Target outcome areas
1	6*	Reduced work capacity, reduced social participation, angry outbursts toward family members and reduced memory	Reduced processing speed and executive dysfunction	1: Reduced memory 2: Reduced physical activity level 3:Angry outbursts
2	6	Reduced social participation, mood changes, depressive thoughts	Difficulties with word mobilization	1: Fatigue and dysregulated sleep 2: Depressive thoughts 3: Reduced social participation
3	6	Difficulties with emotional regulation, dizziness and problems with memory and concentration	Reduced processing speed, visual cognition and mental flexibility	1: Reduced ability to plan complex tasks 2: Reduced memory 3: Inability to handle sudden changes
4	6	Reduced work capacity, less social participation, irritability, reduced attention, headache, fatigue	Reduced verbal abstraction	1: Reduced ability to initiate tasks 2: Fatigue and sudden sleeping 3: Irritability
5	6	Reduced work capacity, double vision and reduced memory	Reduced processing speed, learning, memory, attention, mental flexibility	1: Reduced memory 2: Reduced mental flexibility 3: Reduced balance
6	6	Reduced work capacity, less social participation, angry outbursts toward family members and reduced memory	Reduced mental speed, visual attention and mental flexibility	1: Reduced attention 2: Mental and physical fatigue 3: Reduced memory

GOSE: Glasgow Outcome Scale-Extended. *GOSE 6 = Moderate Disability at an Upper Level.

Figure 2. Flowchart

Table 3. SMART-goals and GAS-score outcomes for each participant

No.	SMART-goal #1	GAS-score #1^A	SMART-goal #2	GAS-score #2^A	SMART-goal #3	GAS-score #3^A
1	Remembering appointments in everyday life	+1	Gain control over frustration and irritability in everyday life	+1	Stabilize mood in everyday life	+1
2	Increase communication skills during conflicts within the family	+2	Manage stress better in everyday life	0	Increased social contact outside core family network	+2
3	Plan execution of complex tasks before initiating the task	−2^B	Gain overview of daily activities	−2^B	Control anger when interrupted while completing task	−2^B
4	Increased structure in everyday tasks and initiate planned tasks	+1	Stabilize circadian rhythm and increased quality of sleep	+1	Experience everyday life as more meaningful	+2
5	Remember more of what has happened during the day	+2	Immediately write down important messages and information during phone calls	+1	Increased social contact	0
6	Register and stop irritability before having an angry outburst	+2	Increased participation and sense of accomplishment during social activities	+1	Register and cope with negative emotions	+2

Possible GAS-scores: −2 = much less than expected, −1 = somewhat less than expected, 0 = expected level, +1 = somewhat more than expected, +2 = much more than expected. ^AOutcome at session 8. ^BParticipant sustained a new TBI before session 8 and experienced increased difficulties in all problem areas with SMART-goals and GAS.

Table 4. Outcome scores at baseline (T1) and 4-month (T2) and 12-month (T3) assessments

Outcome measure	Participant 1			Participant 2			Participant 4			Participant 5			Participant 6
	T1	T2	T3	T1	T2	T3	T1	T2^2	T3	T1	T2	T3	T1	T2	T3
Target Outcome #1 severity (0–4, best-worst)	1	2	1	2	1	2	4	1	1	1	1	1	2	1	1
Target Outcome #2 severity (0–4, best-worst)	1	2	0	3	1	2	4	1	1	3	1	2	2	1	1
Target Outcome #3 severity (0–4, best-worst)	3	1	1	1	1	2	2	1	2	2	1	1	2	3	2
RPQ Sumscore (0–64, best-worst)	14	0^1	14	22	16	20	27	7	31	14	4	10	33	29	26
PHQ-9 Sumscore (0–27, best-worst)	5	6	3	12	5	8	11	2	7	1	1	1	11	7	10
PCRS Participant Sumscore (0–150, worst-best)	108	114	126	125	117	123	118	128	125	127	128	132	106	108	113
PART-O total mean score (0–5, worst-best)	1.85	2.23	2.41	2.54	2.42	2.39	1.96	2.08	2.04	0.91	1.40	0.96	1,83	1,84	1.72

Possible Target Outcome severity scores: 0 = not at all, 1 = slightly, 2 = moderately, 3 = quite a bit, 4 = extremely. ¹We have reason to believe that these responses on Rivermead were not valid due to a misunderstanding while filling out this questionnaire. ² The participant delayed the last intervention session and completed the outcome measures from T2 8 months after inclusion. PART-O = Participation with Recombined Tools-Objectives, PCRS = Patient Competency Rating Scale, PHQ-9 = Patient Health Questionnaire 9 items, RPQ = Rivermead Post-concussion Symptoms Questionnaire.

Table 5. SF-36 subscale scores for all participants at T1, and T3

SF-36 subscale scores^1	Participant 1			Participant 2			Participant 4			Participant 5			Participant 6
	T1	T2	T3	T1	T2	T3	T1	T2^2	T3	T1	T2	T3	T1	T2	T3
Physical functioning	85	90	95	100	95	100	90	95	95	85	90	95	80	90	95
Role physical	0	0	50	100	100	100	0	100	100	75	100	100	75	25	100
Bodily pain	41	52	41	100	100	100	12	72	72	100	100	100	41	51	52
General health	60	65	72	72	92	97	27	82	52	62	85	90	65	57	47
Vitality	45	50	50	45	65	55	15	80	60	55	65	60	40	50	50
Social functioning	50	75	87.5	87.5	75	62.5	0	100	100	100	100	100	50	50	75
Role emotional	33.3	33.3	66.6	66.6	100	66.6	100	100	100	100	100	100	66.6	100	100
Mental health	68	68	72	60	76	60	40	96	80	84	88	80	68	76	72

¹All subscales are transformed scores and range from 0 to 100 (worst-best). ²The participant delayed the last intervention session and completed the outcome measures from T2 at 8 months after inclusion.

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