Participation restrictions among adolescents and adults with neonatal brachial plexus palsy: the patient perspective

Figures & data

Figure 1. Flowchart of participating patients.

Table 1. Patient characteristics, and DASH and SF-36 scores of 75 adolescents and adult patients with NBPP.

Patients (n = 75)
Gender
Male, n (%)	26	(35)
Age Median (IQR) range	20	(17–27)	16–61
16–18 n (%)	33	(44)
19–25 n (%)	22	(29)
26–35 n (%)	11	(15)
36–61 n (%)	9	(12)
Affected side, n (%)
Right	38	(51)
Left	34	(45)
Both	3	(4)
Lesion extent
Group 1: upper plexus lesions, n (%)
C5–C6	39	(52)
C5–C7	30	(40)
Group 2: total plexus lesions, n (%)
C5–T1	6	(8)
Treatment, n (%)
Conservative	26	(35)
Primary surgery	16	(21)
Secondary surgery	15	(20)
Primary and secondary surgery	18	(24)
No longer in follow-up, n (%)	38	(51)
SF-36 (n = 66)
Bodily pain questions:
Had pain in the past 4 weeks, n (%)
No answer	10	(13)
No pain	21	(28)
Mild pain	26	(35)
Severe pain	18	(24)
Pain hampered work in the past 4 weeks, n (%)
No answer	10	(13)
Not at all	38	(51)
Mildly	20	(27)
Severely	7	(9)
Bodily Pain score
Median (IQR)	84	(51.5–100)
Physical functioning
Median (IQR)	90	(77.5–100)
Role-physical
Median (IQR)	100	(50–100)
General health
Median (IQR)	72	(62–91)
Vitality
Median (IQR)	65	(55–75)
Social functioning
Median (IQR)	100	(87.5–100)
Role-emotional
Median (IQR)	100	(100–100)
Mental health
Median (IQR)	72	(64–78)
PCS
Mean (SD)	46.9	(10.5)
MCS
Mean (SD)	50.2	(8.3)
DASH
DASH general (n = 66)
Median (IQR)	16.3	(7.5–32.1)
DASH work (n = 44)
Median (IQR)	12.5	(0–18.8)
DASH sport (n = 42)
Median (IQR)	18.8	(4.7–31.3)

NBPP: neonatal brachial plexus palsy; IQR: interquartile ranges (25th–75th percentile); SD: standard deviation; SF-36: Short Form-36 questionnaire, general population normative scores mean = 50, SD = 10 [30–33]; PCS: physical component score; MCS: mental component score; DASH: Disabilities of the Arm, Shoulder and Hand questionnaire, US general population normative score mean = 10.1; SD = 14.7 [34,35].

Table 2. Education status, work status and the influence of NBPP on education and work among 75 adolescent and adult patients with NBPP.

	n	%
What is your work/education status
Full-time student	20	27
Student having a job on the side	28	37
Having paid employment	21	28
Unemployed	2	3
Work disabled (80–100%) due to NBPP	4	5
What is your highest completed educational level?
Lower education	28	38
Intermediate education	31	41
Higher education	16	21
Was your choice of education influenced by NBPP?
Yes	27	36
No	42	56
Haven’t made a choice yet	6	8
Was your choice of profession influenced by NBPP?
Yes	26	35
No	40	53
Never had a job	9	12
Do you currently have a paid job (including part-time jobs, student jobs)	49	65
Did you ever have a paid job (including part-time jobs, student jobs)	66	88
Did NBPP ever hamper you in a job?
Yes	33	50
No	33	50
Did NBPP play a part in unemployment or work disability?
Yes	10	15
No	56	85

NBPP: Neonatal brachial plexus palsy; Educational levels: Low: primary education or preparatory secondary vocational education; Intermediate: senior secondary vocational education or senior general secondary and pre-university education; High: higher professional education or university education.

Table 3. Participation scores (IPA and USER-P) of 61 adolescent and adult patients with NBPP.

IPA
Standardized sumscores	Median	IQR	Number of participants reporting 1 or more restrictions in:^a
Autonomy indoors	0.14	0.0–0.5	7 possible restrictions; 36 (59%)
Family role	0.57	0.0–1.0	7 possible restrictions; 36 (59%)
Autonomy outdoors	0.40	0.0–0.8	5 possible restrictions; 41 (67%)
Social relations	0.29	0.0–0.8	7 possible restrictions; 44 (74%)
Work and education	1.00	0.2–1.5	6 possible restrictions; 49 (80%)
Perceived participation	Very good and good	Fair	Poor and very poor
	n (%)	n (%)	n (%)
Autonomy indoors	58 (95%)	2 (3%)	1 (2%)
Family role	49 (80%)	9 (15%)	3 (5%)
Autonomy outdoors	51 (84%)	7 (11%)	3 (5%)
Social relations	54 (88%)	5 (8%)	2 (4%)
Work and education	39 (64%)	17 (28%)	5 (8%)
Problem experience	No problems	Minor problems	Severe problems
Mobility	43 (70%)	15 (25%)	3 (5%)
Self-care	38 (62%)	16 (26%)	7 (12%)
Family role	43 (70%)	12 (20%)	6 (10%)
Finances	47 (77%)	9 (15%)	5 (8%)
Leisure	38 (62%)	16 (26%)	7 (12%)
Social relations	40 (65%)	14 (23%)	7 (12%)
Helping and supporting	40 (65%)	14 (23%)	7 (12%)
(Voluntary) occupation^b	30 (54%)	15 (27%)	11 (19%)
Education^c	32 (58%)	14 (25%)	9 (17%)
USER-P
Scores	Median	IQR	Number of participants reporting 1 or more restrictions in:^a
Frequency	34.6	28.4–43.1	x
Restrictions	96.9	90.0–100.0	11 possible restrictions; 37 (61%)
Satisfaction	77.8	69.6–91.7	x

NBPP: neonatal brachial plexus palsy; IQR: interquartile ranges (25th–75th percentile); IPA: Impact on Participation and Autonomy questionnaire: autonomy indoors (self-care and mobility indoors), family role (housekeeping and spending income), autonomy outdoors (leisure activities and mobility outdoors), social relations (equal communication and intimate relations) and work and education (paid work, volunteer work and education) IPA standardized sum-scores 0–4; higher scores indicating lower participation and less autonomy; perceived participation: values are reported as the number of participants who perceived their participation as very good/good, fair, or poor/very poor; problem experience: values are reported as the number of participants who perceived their restrictions as problematic [26–28]; USER-P: Utrecht Scale for Evaluation of Rehabilitation-Participation questionnaire, USER-P scores 0–100, higher scores indicating higher frequency, less restrictions and higher satisfaction [29].

^aNumber of participants reporting 1 or more restrictions out of the specific number of restrictions mentioned on a domain of the IPA and USER-P.

^b5 participants indicated that this IPA item was irrelevant to them.

^c6 participants indicated that this IPA item was irrelevant to them.

Table 4. Factors influencing participation in 61 adolescent and adult patients with NBPP (linear regression analyses adjusted for age and gender).

	IPA					USER-P
	Autonomy indoors β-estimate (95% CI)	Family role β-estimate (95% CI)	Autonomy outdoors β-estimate (95% CI)	Social relations β-estimate (95% CI)	Work and education β-estimate (95% CI)	Frequencies β-estimate (95% CI)	Restrictions β-estimate (95% CI)	Satisfaction β-estimate (95% CI)
Lesion extent:
Upper plexus lesions	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat
Total and lower plexus lesions	0.42 (–0.15; 0.98)	0.81 (–0.07; 1.68)	0.67 (–0.03; 1.37)	0.05 (–0.56; 0.67)	0.43 (–0.40; 1.25)	–4.83 (–19.72; 10.07)	–8.30 (–19.20; 2.61)	–10.10 (–28.37; 8.17)
Affected side:
Right	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat
Left	0.09 (–0.19; 0.37)	0.06 (–0.38; 0.50)	0.07 (–0.29; 0.42)	0.12 (–0.18; 0.42)	–0.15 (–0.55; 0.26)	1.79 (–5.48; 9.06)	1.03 (–4.51; 6.56)	0.44 (–8.67; 9.56)
Both	0.19 (–0.42; 0.81)	0.22 (–0.74; 1.19)	0.03 (–0.75; 0.81)	0.03 (–0.63; 0.69)	0.19 (–0.70; 1.07)	10.51 (–5.34; 26.36)	–0.68 (–12.67; 11.32)	4.17 (–15.70; 24.03)
Treatment history:
Conservative	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat	Reference cat
Primary surgery	0.17 (–0.20; 0.54)	0.05 (–0.50; 0.60)	0.17 (–0.26; 0.59)	0.24 (–0.15; 0.63)	0.01 (–0.48; 0.50)	–8.22 (–17.70; 1.25)	1.20 (–5.57; 7.96)	–1.52 (–13.68; 10.64)
Secondary surgery	0.09 (–0.25; 0.42)	0.05 (–0.45; 0.55)	0.15 (–0.23; 0.54)	0.34 (–0.01; 0.69)	0.26 (–0.19; 0.70)	–2.85 (–11.58; 5.88)	0.76 (–5.42; 6.94)	–0.97 (–12.17; 10.23)
Primary and secondary surgery	–0.03 (–0.39; 0.33)	–0.24 (–0.78; 0.31)	0.10 (–0.32; 0.51)	0.06 (–0.32; 0.44)	0.32 (–0.16; 0.81)	4.66 (–5.18; 14.50)	0.97 (–6.04; 7.97)	0.58 (–12.05; 13.20)
SF-36 Bodily Pain score	–0.01 (–0.01; 0.00)*	–0.01 (–0.02; –0.00)*	–0.01 (–0.02; –0.00)*	–0.01 (–0.01; 0.01)	–0.01 (–0.02; 0.00)*	–0.01 (–0.17; 0.16)	0.23 (0.13; 0.34)***	0.20 (–0.01; 0.40)*
SF-36 physical component score	–0.02 (–0.04; –0.01)***	–0.05 (–0.07; –0.03)***	–0.04 (–0.05; –0.02)***	–0.02 (–0.03; –0.01)**	–0.04 (–0.06; –0.03)***	0.29 (–0.07; 0.65)	0.73 (0.54; 0.92)***	0.88 (0.49; 1.27)***
SF-36 mental component score	–0.04 (–0.05; –0.02)***	–0.05 (–0.07; –0.03)***	–0.05 (–0.06; –0.03)***	–0.04 (–0.05; –0.02)***	–0.04 (–0.06; –0.02)***	0.52 (0.12; 0.92)*	0.41 (0.11; 0.72)**	1.11 (0.68; 1.54)***
DASH general	0.01 (0.01; 0.02)***	0.03 (0.02; 0.04)***	0.02 (0.01; 0.03)***	0.02 (0.01; 0.02)***	0.03 (0.01; 0.04)***	–0.11 (–0.33; 0.12)	–0.33 (–0.46; –0.21)***	–0.47 (–0.72; –2.23)***

NBPP: Neonatal Brachial Plexus Palsy; IPA: Impact on Participation and Autonomy questionnaire autonomy indoors (self-care and mobility indoors), family role (housekeeping and spending income), autonomy outdoors (leisure activities and mobility outdoors), social relations (equal communication and intimate relations) and work and education (paid work, volunteer work and education) [26–28]; USER-P: Utrecht Scale for Evaluation of Rehabilitation-Participation questionnaire [29]; DASH: Disabilities of the Arm, Shoulder and Hand questionnaire; SF-36: Short Form-36 questionnaire; PCS: Physical component score; MCS: Mental component score; regression analyses: a new model was made for each factor, containing only that factor, adjusted for age and gender. No model containing all factors was made; β-estimate: difference in IPA/USER-P scores compared to the reference category (reference cat); The β-estimate for SF-36 and DASH scores indicates the influence of these scores on IPA/User-P domain scores; e.g., a score of 20 points more on the DASH general score results in an increase of 0.60 points on this IPA work and education scale (20 * the β-estimate of 0.03 = 0.60).

* p < 0.05.

** p < 0.01.

*** p < 0.001, corrected for age and gender.

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