Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs

Figures & data

Table

SMA type	Age of onset	Maximal motor milestone	Motor ability
I	<6 months	None	Unable to sit or roll
II	6–18 months	Sitting	Unable to walk
III	>18 months	Walking	May lose ability to walk
IV	>30 years	Normal motor development	Mild motor impairment

Table 1. Sociodemographic and medical characteristics of respondents (N = 92).

	N (%)
Age, M (SD)	40.3 (14.5)
Age at diagnosis, M (SD)	9.3 (11.6)
Sex (female)	55 (60%)
Country of birth
The Netherlands	84 (91%)
Other	8 (9%)
Education
Special education	7 (8%)
Regular primary school	1 (1%)
Regular secondary education	17 (18%)
Regular secondary voc. training	21 (23%)
Regular higher voc. training/university	46 (50%)
Employment
Working fulltime	15 (16%)
Working part-time	30 (33%)
Disability compensation/sick leave	15 (16%)
No job (yet)	20 (22%)
Lost job/dismissed	1 (1%)
Student	11 (12%)
Annual gross income (Euro)
Not answered	55 (60%)
<20 000	10 (11%)
20 000–35 000	15 (16%)
35 000–50 000	7 (8%)
50 000–75 000	3 (3%)
>75 000	2 (2%)
Living situation
Independent without support	45 (49%)
Independent with structural support	28 (30%)
With (foster) parents	18 (20%)
Other	1 (1%)
Siblings
No, single child in family	8 (9%)
One or more younger brothers/sisters	52 (57%)
One or more older brothers/sisters	50 (54%)
Having sibling(s) with SMA	35 (39%)
Having a partner	45 (50%)
Having child(ren)	18 (20%)
SMA subtype
I	3 (3%)
II	37 (40%)
IIIa	21 (23%)
IIIb	26 (29%)
IV	4 (4%)
HFMSE (range 0–66), M (SD)	15.8 (20.8)
Wheelchair use
No	14 (15%)
Manually operated wheelchair	12 (13%)
Electric wheelchair	72 (79%)
Ventilatory support
No	71 (78%)
Not yet, but will soon	1 (1%)
Night time ventilation	14 (15%)
Tracheostomy	5 (6%)
Previous scoliosis surgery	44 (48%)

HFMSE: Hammersmith Functional Motor Scale-Expanded.

Table 2. Participation and Psychological Needs Satisfaction of adults with SMA (N = 88–90).

	Cronbach’s α	M (SD)
Participation (USER-P) (range 0–100)
Frequency (total score)		35.7 (8.9)
Work, household	–0.49	21.5 (11.4)
Leisure, social	0.52	49.8 (11.9)
Restrictions	0.89	68.9 (20.4)
Satisfaction with participation	0.82	76.6 (18.0)
Psychological Needs Satisfaction (BPNSFS) (range 1–5)
Autonomy	0.82	4.0 (0.7)
Relatedness	0.76	4.6 (0.5)
Competence	0.76	4.1 (0.6)

USER-P: Utrecht Scale for Evaluation of Rehabilitation-Participation; BPNSFS: Basic Psychological Needs Satisfaction and Frustration Scale.

Table 3. Psychological well-being of adults with SMA (N = 87).

	SMA sample		Comparison studies
	α	M (SD)	M (SD)	M (SD)
Satisfaction with life (SWLS) (range 5–35)	0.87	26.2 (6.5)	26.2 (5.7) [27]	25.7 (5.6) [31]
Self-esteem (RSES) (range 0–30)	0.75	25.0 (3.9)	21.6 (4.5) [30]	20.9 (4.4) [25]
Affective state (PANAS) (range 10–50)
Positive affect	0.85	38.8 (5.4)	32.1 (6.3) [29]	34.1 (5.1) [28]
Negative affect	0.84	17.5 (5.6)	17.0 (5.7)–19.2 (7.0) [29]	22.5 (6.5) [28]

SWLS: Satisfaction with Life Scale; RSES: Rosenberg Self-Esteem Scale; PANAS: Positive and Negative Affect Scale.

Table 4. Pearson’s correlation between indices of participation, basic need satisfaction and psychological well-being (N = 87).

	USER-P restriction	USER-P satisfaction	BPNSFS autonomy	BPNSFS relatedness	BPNSFS competence	Satisfaction with life	Self-esteem	Positive affect	Negative affect
USER-P Frequency	0.29**	0.35***	0.22*	0.15	0.31**	0.22*	0.24*	0.36***	–0.19
USER-P Restrictions	1	0.14	0.23*	0.13	0.13	0.04	0.01	–0.04	–0.28**
USER-P Satisfaction		1	0.49***	0.26*	0.33**	0.43***	0.34***	0.33**	–0.26*
BPNSFS Autonomy			1	0.47***	0.65***	0.51***	0.47***	0.50***	–0.44***
BPNSFS Relatedness				1	0.49***	0.17	0.35***	0.34***	–0.47***
BPNSFS Competence					1	0.41***	0.66***	0.69***	–0.44***
SWLS Satisfaction with life						1	0.43***	0.44***	–0.36***
RSES Self-esteem							1	0.62***	–0.57***
PANAS Positive affect								1	–0.32**
PANAS Negative affect									1

USER-P: Utrecht Scale for Evaluation of Rehabilitation-Participation; BPNSFS: Basic Psychological Needs Satisfaction and Frustration Scale; SWLS: Satisfaction with Life Scale; RSES: Rosenberg Self-Esteem Scale; PANAS: Positive and Negative Affect Scale.

*p ≤ 0.05.

**p ≤ 0.01.

***p ≤ 0.001.

Table 5. Multivariate analyses investigating the contribution of participation and need satisfaction to psychological well-being (N = 85).

	Satisfaction with life		Self-esteem		Positive affect		Negative affect
	Model 1	Model 2	Model 1	Model 2	Model 1	Model 2	Model “0”	Model 1	Model 2
	Std. B	Std. B	Std. B	Std. B	Std. B	Std. B	Std. B	Std. B	Std. B
Step “0”
Sex (M)	n.a.		n.a.		n.a.		–0.23*	–0.20*	–0.21*
ΔR^2							0.05
ΔF							4.72*
Step 1
USER-P Freq.	0.15	0.10	0.19	0.02	0.34**	0.17*		–0.11	–0.04
USER-P Restr.	–0.03	–0.10	–0.08	–0.13	–0.18	–0.24**		–0.23*	–0.17
USER-P Sat.	0.38***	0.21	0.29**	0.12	0.25*	0.05	–	–0.21	–0.06
ΔR^2	0.20		0.15		0.21			0.15
ΔF	6.79***		4.61**		7.16***			4.82**
Step 2
Autonomy		0.37**		0.04		0.14			–0.07
Relatedness		–0.14		0.03		0.02			–0.32**
Competence	–	0.15	–	0.60***	–	0.57***	–	–	–0.16
ΔR^2		0.13		0.33		0.36			0.18
ΔF		5.11**		16.23***		21.23***			7.67***
Model
R^2	0.20	0.33	0.15	0.47	0.21	0.57	0.05	0.20	0.38
Adjusted R^2	0.17	0.28	0.11	0.43	0.18	0.53	0.04	0.16	0.33
Overall F	6.79***	6.47***	4.61**	11.72***	7.16**	16.87***	4.72*	4.96***	6.83***

USER-P Freq: USER-P frequency scale; USER-P Restr: USER-P restrictions scale; USER-P Sat: USER-P satisfaction with participation scale.

*p ≤ 0.05.

**p ≤ 0.01.

***p ≤ 0.001.

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