Exploring powered wheelchair standing device use in children and adults: a longitudinal case series

Figures & data

Figure 1. Sequence of activities in the case series.

Sequence of activities in the case series. Beginning with baseline assessment and provision of a powered wheelchair standing device, followed by a two-month testing session, a six-month testing session and a 12-month testing session.

Table 1. Descriptions of outcome measures.

Purpose of the case series	Outcome measure	Brief description	Psychometric information
To explore the influence of PWSD use on participants’ activities and participation	Canadian Occupational Performance Measure – Danish language version [12]	A semi-structured interview to identify, prioritize, and rate occupational performance issues that restrict or impact an individual’s performance. All COPM measurements were done by semi-structured interviews with the participants. P3’s (age 8) parents were present and assisted her during the COPM interview.	Valid and reliable for use with children and adults (COPM manual) [13]. An increase of 2 points = clinically significant improvement (COPM manual) [13].
	Semi-structured qualitative interview	Questions provided in Appendix 1	N/A
To explore the influence of PWSD use on participants’ quality of life	EQ-5D-5L – Danish language version (adult participants) [14]	A 2-part health-related quality of life questionnaire for adults. Part 1: a health profile comprised of 5 dimensions: (1) mobility; (2) self-care; (3) usual activities; (4) pain/discomfort; and (5) anxiety/depression. Focuses on limitations in function and symptoms [14]. Part 2: EQ-VAS, a vertical VAS providing a global assessment of health.	Excellent reliability and validity across a broad range of adult populations, conditions and settings [14].
	EQ-5D-Y – Danish language version (child/adolescent participants) [15] and proxy version 1 (caregiver) [17].	A 2-part health-related quality of life questionnaire for children. Part 1: A health profile comprised of 5 dimensions: (1) mobility; (2) looking after myself; (3) doing usual activities; (4) having pain or discomfort; and (5) feeling worried, sad or unhappy. Part 2: EQ-VAS, a vertical VAS providing a global assessment of health. P1 and P2 used the self-completed version. Proxy version 1, wherein the caregiver was asked to rate their perceptions of the child’s health-related quality of life, was used for P3	Valid and reliable for children ≥8 years of age [16]
	Patient-Assessment of Constipation Quality of Life Questionnaire – Danish language version [18]	Assesses how constipation has affected an individual’s everyday life over the previous 14-day period. Divided into 4 subscales: (1) dealing with physical discomfort; (2) psychosocial discomfort; (3) satisfaction; and (4) worries and concerns. All participants used the self-report version.	Higher scores indicate a negative effect of constipation on QoL. Internally consistent, reproducible, valid and responsive to improvements over time [18]. MID= −0.5 points in the overall score [18].
	Semi-structured qualitative interview	Questions provided in Appendix 1	N/A
To explore the influence of PWSD use on participants’ LE PROM	Passive flexion and extension at the bilateral hips and knees. Passive dorsiflexion and plantarflexion of the bilateral ankles.	Measurements were obtained by a physiotherapist using methods described by the Association of Danish Physiotherapists [20,23,25]	Goniometric measurements have been found to valid and reliable for clinical use [19,21,22,24]
To explore participants’ patterns of PWSD use	Data regarding PWSD use were selected by the first author based on full data sets from Permobil Connect (frequency of device use, frequency, and duration of standing, etc.)	Continuously collected automatically by each PWSD through Permobil Connect [26]. Standing in the PWSD was defined by Permobil Connect as a forward angle seating position of ≥45°.	N/A

MID: minimum important difference; N/A: not applicable; VAS: visual analogue scale.

Figure 2. The powered wheelchair standing device in sitting and standing. The powered wheelchair standing device allows users access to the vertical plane.

Comparison of a young girl sitting and standing in a powered wheelchair standing device whilst she is reaching for a book in a bookshelf.

Table 2. Participant demographics at the onset of the case series.

Participant	Age (years)	Gender	Diagnosis	Years of WC use	Type of WC used at onset	Years since last stood	Use of practical household assistants (cleaning, meal prep, etc.)	Use of personal care attendants (bathing, dressing, etc.)
Participant 1	17	F	CP	12	PWC	3	Y	Y
Participant 2	13	F	SCI – lumbar lesion (exact level unknown)	6	MWC with power assist	0	N	Y
Participant 3	8	F	CP	3	MWC with power assist	0	N	N
Participant 4	24	M	SCI – C6–C7 lesion	18	MWC	10	Y	Y
Participant 5	39	M	MS	14	PWC	0	Y	Y
Participant 6	During baseline testing, it was determined that the participant would be unable to safely use a PWSD. Therefore, the participant was removed from the case series.
Participant 7	74	F	SCI – T4–T5 lesion	7	PWC	7	Y	Y
Participant 8	72	F	SCI – lumbar lesion (exact level unknown)	8	MWC	3	Y	Y
Participant 9	46	M	SCI – T3 lesion	1	MWC	0	N	Y

CP: cerebral palsy; F: female; M: male; MWC: manual wheelchair; MS: multiple sclerosis; N: no; PWC: power wheelchair; SCI: spinal cord injury; WC: wheelchair; Y: yes.

Table 3. Canadian Occupational Performance Measure [11,12] ratings at 2, 6 and 12 months.

	Identified occupational performance issues	Baseline ratings		Ratings at 2 months		Ratings at 6 months		Ratings at 12 months
		Perf.	Satis.	Perf.	Satis.	Perf.	Satis.	Perf.	Satis.
Participant 1	Ordering a cup of coffee	5	4	Assessment not performed due to COVID-19		5	4	5	4
	Cooking food	5	4			5	4	5	4
	Playing WC tennis	1	1			1	1	1	1
	Washing upper body and face	2	3			2	3	2	3
	Doing laundry	1	1			1	1	1	1
Participant 2	Baking a cake	7	4	Assessment not performed due to COVID-19		7	4	7	4
	Driving WC to visit friends	1	1			1	1	1	1
	Dancing	4	3			4	3	4	3
	Cook food	5	3			5	3	5	3
	Using the toilet at school	10	9			10	9	10	9
Participant 3	Giving someone a hug	7	6	10	10	10	10	10	10
	Reaching things on a high shelf	1	5	7	8	10	10	7	8
	Stirring a pot on the stove	2	3	8	9	7	8	9	10
	Writing on a blackboard at school	4	8	N/A – limited school attendance due to COVID-19
	Turning on the water in the kitchen sink	1	4	9	10	8	9	9	10
Participant 4	Performing tasks at work	6	4	7	5	7	5
	Assisting with cooking activities	1	1	1	1	1	1
	Participating in social gatherings	5	3	5	3	5	3
	Transferring from WC to shower chair	4	2	4	2	4	2
	Working out in a fitness centre	1	1	1	1	1	1
Participant 5	Increasing stability to perform UE tasks	6	3	6	4	7	5
	Reaching for groceries on high shelfs	1	1	6	4	6	4
	Getting out of the house to socialize	6	3	6	3	6	3
	Cooking and arranging food	4	2	5	5	6	5
	Participating in group fitness classes	6	4	5	4	5	4
Participant 7	Eating a meal without GI pain	4	4	4	4	4	4
	Taking deep breaths	5	5	6	8	5	5
	Gardening	4	7	5	7	5	5
Participant 8	Making floral arrangements	1	6	Withdrew from the case series due to unrelated health issues
	Gardening	4	4
	Going on vacations	8	8
	Shopping in the city centre	3	3
	Cleaning corners and glass tables	4	8
Participant 9	Working out	7	6	10	10	10	10	10	10
	Taking a shower	9	9	9	9	9	9	9	9
	Participating in social and physical activities	1	1	10	10	10	10	10	10
	Bowel function (constipation)	1	1	10	10	10	10	10	10
	Cleaning the house	7	8	10	10	10	10	10	10

GI: gastro-intestinal; N/A: not applicable; Perf.: performance; Satis.: satisfaction; WC: wheelchair. UE: upper extremity.

Figure 3. EQ-5D-Y health profile scores for participants <18 years of age. Lower scores indicate a better quality of life.

Bar chart of the three children’s score on European Quality of Life, five dimensions, young version at baseline, six-months and one year regarding mobility, doing usual activities, having pain or discomfort, looking after myself and feeling worried, sad or unhappy.

Table 4. EQ-VAS global assessment of health [13, 14].

	Participant 1	Participant 2	Participant 3	Participant 4	Participant 5	Participant 7	Participant 9
Baseline	75	80	55	80	50	75	35
6-month testing session	50	65	60	70	50	75	80
12-month testing session	60	98	75	N/A	N/A	N/A	80

N/A: not applicable as the participant had discontinued use of the powered wheelchair standing device; VAS: Visual Analogue Scale where a score of 100 designates the best imaginable health and a score of 0 indicates the worst imaginable health.

Figure 4. EQ-5D-5L health profile scores for participants <18 years of age. Lower scores indicate a better quality of life.

Bar chart of the four adults’ score on European Quality of Life, five dimensions, five levels at baseline, six-months and one year regarding mobility, usual activities, self-care, pain or discomfort, and anxiety or depression.

Table 5. Patient-Assessment of Constipation Quality of Life Questionnaire scores.

Participant	Baseline	6 months	1 year	Change between the baseline and final PAC-Q administrations
Participant 1
Worries and concerns	1.0	Assessment not performed due to COVID-19	0.0	−1.0
Physical discomfort	1.5		0.5	−1.0
Psychosocial discomfort	2.5		0.5	−2.0
Satisfaction	0.0		2.0	2.0
Total score	1.3		0.8	−0.5^a
Participant 4
Worries and concerns	1.0	0.0	N/A	−1.0
Physical discomfort	1.0	1.0	N/A	0.0
Psychosocial discomfort	1.0	0.5	N/A	−0.5
Satisfaction	1.0	1.0	N/A	0.0
Total score	1.0	0.6	N/A	−0.4
Participant 5
Worries and concerns	2.0	1.5	N/A	−0.5
Physical discomfort	2.0	0.0	N/A	−2.0
Psychosocial discomfort	0.5	0.0	N/A	−0.5
Satisfaction	2.0	2.0	N/A	0.0
Total score	1.6	0.9	N/A	−0.8^a
Participant 9
Worries and concerns	2.0	0.0	1.0	−1.0
Physical discomfort	2.0	1.0	1.0	−1.0
Psychosocial discomfort	1.5	0.0	0.0	−1.5
Satisfaction	2.0	1.0	3.0	1.0
Total score	1.9	0.5	1.3	−0.6^a

N/A: not applicable as the participant had discontinued use of the powered wheelchair standing device; PAC-QOL: Patient-Assessment of Constipation Quality of Life Questionnaire.

Lower scores indicate better quality of life.

^a A change in total PAC-QOL scores between the baseline and final administrations that exceeded the minimal important difference value of –0.5 points (15).

Figure 5. Changes in participants’ lower extremity passive range of motion from baseline.

Horizontal bar chart of changes in lower extremity passive range of motion in the hip, knee and ankle from baseline to the six-month testing session or the 12-month testing session, most changes were positive.

Figure 6. (a) Total standing time per month, average standing time per day, and maximum standing time during a single day.(b) Number of days of powered wheelchair standing device use and use of the standing feature. Permobil Connect data could not be analysed for participants 2 and 4.

Bar chart of total standing time in hours per month per participant combined with a line graph of average standing time per day in a month and maximum standing time on a single day during that month, there is a big variance in standing time between the participants and in the individual participant during the case series.

Table

Questions for participant/child participant’s parent (verbiage modified for parent interviews as appropriate)

Questions for participant’s local therapist/care assistants

How do/did you use the PWSD in everyday life? How does/did it feel to perform everyday activities in standing versus sitting? How do you use the chair in school/at work? How do/did you experience standing in the standing chair? How do/did you experience using the standing function in social contexts? How do/did the functions of the PWSD influence your ability to perform everyday activities? How did the PWSD influence your need for help to perform these activities? From your perspective, what are the advantages and disadvantages of using the PWSD? Describe a situation where the PWSD made an everyday activity easier to perform. Describe a situation where the PWSD made an everyday activity more difficult to perform. Would the PWSD be able to be used as your primary wheelchair? If not, what does the PWSD need to be able to do for you to be able to use it as a primary wheelchair? How do you experience standing in the PWSD compared to similar standing aids (standing frames, etc.)? What were your expectations for using the PWSD, and have they been met? Please explain your response.

From your perspective, how did the participant use the PWSD in everyday life? Have you used the functions of the PWSD with the citizen? Please describe. From your perspective, what were the benefits/challenges of the participant using the PWSD in everyday life? From your perspective, how has using the standing feature of the PWSD influenced the participant? From your perspective, have you observed any changes in the participant’s functional level or health since they started to use the PWSD? From your perspective, how do you feel the PWSD has influenced the participant’s quality of life? From your perspective, what do you feel it means for participants in general to be able to stand in the PWSD? From your perspective, how do you feel the PWSD and its standing features influenced the participant’s social opportunities at work/school? From your perspective, what are the potential outcomes of regularly using a PWSD in everyday life? From your perspective, what makes a PWSD different other mobility aids? From your perspective, what are the advantages/disadvantages of this technology?

PWSD: power wheelchair standing device.

Table

Parameter of PWSD use	Participant 1	Participant 3	Participant 5	Participant 7	Participant 8	Participant 9
Number of months the PWSD was used during the case series	8	12	6	6	2	12
Total number of stands	95	202	89	33	69	167
Total hours of standing time	10.7	44.0	6.8	4.9	16.8	11.0
Maximum minutes of standing during a single day	55	91.8	57.6	36.5	39.5	38.7
Average minutes of standing time per session	6.8	13.1	4.6	8.9	14.6	3.9
Average total minutes of standing time per day	16.9	19.6	12.3	12.7	24.6	10.3
Number of days the standing function was used at least one time	38	138	33	23	41	64
Number of days with standing 30–60 min	8	18	4	1	13	2
Number of days standing >60 min	0	3	0	0	0	0

Due to issues with Permobil Connect, PWSD use data were not gathered for participants 2 and 4.

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