Feasibility of a novel blended-care intervention for fatigue after acquired brain injury: a pilot study of the Tied by Tiredness intervention

Figures & data

Figure 1. Example of a feedback graph for level of fatigue over the intervention period (6 weeks, 3 days per week).

Note. Each point represents a fatigue rating by the participant within a day and lines that connect these dots represent separate measurement days. For example, the data in the circle represent Day 1 of the first week, during which the participant provided four fatigue ratings. During treatment sessions, the therapist can zoom in on individual days or weeks and plot extra information in the graph (e.g., concurrent mood) to get personalized insights into fatigue and its related factors.

Table 1. Tied by tiredness intervention treatment modules.

Treatment modules	Content of the treatment modules
1. Fatigue during the day	Goals: Getting to know the participant and healthcare professional. Introduction to treatment, explain the method, discuss the worksheet. Discuss information about fatigue after brain injury and limited exercise capacity. Gain personalized insight into the course of fatigue during the day and the measurement period.
2. Fatigue during the day in relation to mood and compared to the first week	Goals: Gaining insight into the course of fatigue over the measurement period and in comparison, with the previous period Gain insight into the course of fatigue in relation to mood. Is there a connection between fatigue and certain feelings? Are there unhelpful thoughts that affect mood? Discuss appendices 4G schedule and module ‘Dealing with unhelpful thoughts’ (if patient encounters such thoughts) – Optional
3. Fatigue during the day in relation to physical exertion and compared to previous weeks	Goals: Gain insight into the course of fatigue over the measurement period and in comparison, to previous periods Gaining insight into the course of fatigue in relation to physical exertion Identify and discuss unhelpful thoughts about exercise – Optional. Discuss the importance of relaxation – Optional.
4. Fatigue during the day in relation to mental effort and compared to previous weeks	Goals: Gain insight into the course of fatigue over the measurement period and in comparison, to previous periods Gain insight into the course of fatigue in relation to mental effort Identify and discuss unhelpful thoughts about exercise – Optional.
5. Fatigue during the day in relation to activities and compared to previous weeks	Goals: Gain insight into the course of fatigue over the measurement period and in comparison, to previous periods Gain insight into the course of fatigue in relation to different activities Identify and discuss unhelpful thoughts about engaging in certain activities – Optional
6. Fatigue during the day in relation to social contacts and location and compared to previous weeks.	Goals: Gain insight into the course of fatigue over the measurement period and in comparison, to previous periods Gain insight into the course of fatigue in relation to social contacts Discuss dealing with the environment based on the appendix Dealing with the environment. Detecting and discussing unhelpful thoughts about dealing with others – Optional

Table 3. Weekly number of signals responded to (out of 24) and corresponding response rate in percentage per participant.

Week	Pt. 1	Pt. 2	Pt. 3	Pt. 4	Pt. 5	Pt. 6	Pt. 7	Total
1	11 (45.8%)	19 (79.2%)	13 (54.2%)	18 (75.0%)	6 (25.0%)	17 (70.8%)	14 (58.3%)	98/168 (58.3%)
2	15 (62.5%)	0 (0.0%)	17 (70.8%)	15 (62.5%)	7 (29.2%)	18 (75.0%)	15 (62.5%)	87/168 (51.8%)
3	10 (41.7%)	14 (58.3%)	13 (54.2%)	17 (70.8%)	7 (29.2%)	15 (62.5%)	18 (75.0%)	94/168 (56%)
4	12 (50.0%)	16 (66.7%)	11 (45.8%)	18 (75.0%)	13 (54.2%)	17 (70.8%)	15 (62.5%)	102/168 (60.7%)
5	11 (45.9%)	15 (62.5%)	9 (37.5%)	13 (54.2%)	6 (25.0%)	20 (83.3%)	15 (62.5%)	89/168 (52.9%)
6	12 (50.0%)	11 (45.8%)	10 (41.7%)	20 (83.3%)	16 (66.7%)	15 (62.5%)	14 (58.3%)	98/168 (58.3%)
Total	71/144 (49.3%)	75/144 (52.1%)	73/144 (50.7%)	101/144 (70.1%)	55/144 (38.2%)	102/144 (70.8%)	91/144 (63.2%)	568/1008 (56.3%)

Pt. = participant.

Table 2. Demographics of participants.

Variable	Completed intervention (n = 7)	Discontinued intervention (n = 3)
Age, mean (SD)	58.8 (9.9)	40.3 (5.4)
Sex, n
Male	5	2
Female	3	1
Occupation, n
Work/study (normal conditions)	0	0
Work/study (special conditions)	2	0
Sick leave	2	3
Unemployed	1	0
Retired	2	0
Living arrangement, n (%)
Cohabitation	1	1
Married	6	2
Highest educational level
Elementary	1	1
−12 years	4	1
>12 years	2	1
Type of injury
Traumatic brain injury	1
Stroke	4	2
Cerebral abscess	1
Meningitis	1
Tumor		1
Months since injury, mean (SD)^a	51.4 (28.3)	35.6 (8.1)
DMFS pre-intervention	48.6 (3.6)	38 (6), 92)

a = if tumor, date of neurosurgery served as reference. DMFS = Dutch Multifactor Fatigue Scale.

Table 4. Evaluation questionnaire about usability app, 7-point likert scale with 1 ‘not at all’ and 7 ‘very’.

QUESTIONS	Pt.1	Pt.2	Pt.3	Pt.4	Pt.5	Pt.6	Pt.7	Avg.
Could you read the text of the app on the screen well?	7	7	7	7	6	7	7	6.8
Did you find it difficult to turn the app on?	1	1	1	1	6	1	1	1.7
Did you find it difficult to operate the app?	1	1	1	1	5	1	1	1.5
Was the usability of the app well explained?	7	7	7	6	5	7	7	6.6
Were the questions difficult or unclear?	4	1	1	6	6	1	*	3.1
Was the number of notifications a burden?	3	1	1	1	1	1	1	1.3
Was the duration of the questionnaire a burden?	2	1	1	1	1	1	1	1.1
Was the sound of the notification a burden?	2	1	1	1	2	1	1	1.3
Did technical difficulties cause problems with filling in the questions?	3	6	6	1	7	1	1	3.6

Table 5. Evaluation questionnaire about the intervention, 7-point likert scale with 1 ‘not at all’ and 7 ‘very’.

QUESTIONS	Part.1 Part.1Pt.1	Part.2Pt.2	Part.4Pt.3	Part.5Pt.4	Part.6Pt.5	Part.8Pt.6	Pt.7	Avg.
Was the duration of the intervention period too long?	*1	*1	2	1	22	11	1	1.3
Did the intervention enhance understanding your fatigue?	*7	*6	7	5	3	7	7	6
Did you experience the intervention SESSIONS as useful?	77	66	7	6	7	7	7	6.7
Did you experience the intervention E-MAILS as useful?	77	66	6	6	7	7	6	6.4

* not filled in; Pt. = participant; Avg. = average of momentary fatigue.

Figure 2. Weekly average of momentary fatigue rating per participant and the mean of the three fatigue measurements.

Table 6. Weekly average of momentary fatigue rating per participant on a 7-point likert scale and the average of the three types of fatigue ratings.

	Pt. 1			Pt. 2			Pt. 3				Pt. 4		Pt. 5			Pt. 6			Pt. 7			Avg. Fatigue
Week	G	P	M	G	P	M	G	P	M	G	P	M	G	P	M	G	P	M	G	P	M	G	P	M
1	5.5	3.4	5.1	6.9	7	7	4.1	4.6	4.5	3.1	3.1	2	4.2	3.8	4.8	5.5	1.1	5.5	4.6	3.5	4.3	4.8	3.7	4.7
2	4.2	3	5.7				3.6	4	4	2.8	2.4	2	3.6	4.2	3.4	5.4	1.6	5.2	3.2	5	4.1	3.8	3.3	4.1
3	6.1	2.6	3.9	5	5	5	4.4	4	3.8	2.9	2.6	2	3.9	2.9	3.3	4.7	2.4	5.8	4.3	3.8	4.5	4.4	3.3	4
4	5.4	2.4	6	5.1	5	5	4.5	5	5	2.5	2.5	1.9	3.9	4.3	3.3	4.5	2.7	5.1	3.7	4	3.8	4.2	3.7	4.3
5	4.8	2	5.5	5	5	5	4.5	4.6	4.1	2.5	2.3	1.8	4.2	4.5	3.7	3.9	2.2	4.6	3.7	3.5	2.8	4.1	3.4	3.9
6	4.7	2.5	4.6	5	5	5	4.2	4.6	4.6	2.2	2.4	1.6	4.5	4.3	3.8	4.7	2.1	4.1	2.9	2.7	2.3	4	3.3	3.7

G = general fatigue; p = physical fatigue; M = mental fatigue; Pt. = participant; Avg. = average of all participants.

Table

1.	I feel cheerful.	Likert scale 1–7
2.	I feel relaxed.	Likert scale 1–7
3.	I feel satisfied.	Likert scale 1–7
4.	I feel anxious.	Likert scale 1–7
5.	I feel sad.	Likert scale 1–7
6.	I feel confident.	Likert scale 1–7
7.	I feel irritable.	Likert scale 1–7
8.	I feel helpless.	Likert scale 1–7
9.	I worry.	Likert scale 1–7
10.	What am I doing?	nothing, rest, work, housework, errands, something else
11.	I can do this well.	Likert scale 1–7
12.	This takes effort from me.	Likert scale 1–7
13.	I would rather do something else.	Likert scale 1–7
14.	Where am I?	At home, with family/friends, at work, health care, public place, on the road, somewhere else
15.	With whom am I?	partner, live-in, family living out, friends, colleagues, caregiver, acquaintances, strangers/others, no one
16.	I would rather be alone.	Likert scale 1–7
17.	I find this company enjoyable.	Likert scale 1–7
18.	In this company, I feel comfortable.	Likert scale 1–7
19.	I would rather be in the company of others.	Likert scale 1–7
20.	I enjoy being alone.	Likert scale 1–7
21.	I feel comfortable.	Likert scale 1–7
22.	I feel tired.	Likert scale 1–7
23.	I feel physically tired.	Likert scale 1–7
24.	I feel mentally tired.	Likert scale 1–7
25.	I am in pain.	Likert scale 1–7
26.	Since the last beep, I have done some physical work	Likert scale 1–7
27.	Since the last beep, I have done some mental work.	Likert scale 1–7
28.	This beep disturbed me.	Likert scale 1–7