A 15–20-year follow-up of mental health, psychosocial functioning and quality of life in a single center sample of individuals with differences in sex development

Figures & data

Figure 1. A flow diagram of patients in Part 1 and Part 2.

Table 1. Participants, with diagnosis classification.

		Baseline					Follow-up
		Total (n = 33)	Males^a (n = 9)		Females^a (n = 24)		Total (n = 13)	Males (n = 4)		Females (n = 9)
Age (years)			≤9	10–18	≤9	10–18		≤9	10–18	≤9	10–18
46, XX DSD	CAH (n)	17			9	8	8			3	5
46, XY DSD	AIS (n)	2			0	2
	Gonadal dysgenesis (n)	4			0	4	1				1
	Ovotesticular (n)	1			0	1
	Hypospadia^b (n)	9	8	1			4	3	1
Control group	(Years)		1–6	14–16	1–6	14–16
	(n)	67	15	18	17	17

CAH: congenital adrenal hyperplasia, AIS: androgen insensitivity syndrome.

^a Assigned gender.

^b Severe perineoscrotal hypospadias associated with genital ambiguity.

Table 2. DSD group compared with the control group.

	DSD group (n = 32)	Control group (n = 67)
Gender, n (%)
Female	24 (80.0)	34 (50.7)
Male	9 (20.0)	33 (49.3)
Age at study (years)	9.5 (2–18)	14 (1–16)
CAS^a	n = 20	n = 35
Total score	28 (4–72)^a	16 (3–64)^a
CGAS^b	n = 32	n = 35
	77.50 (40–94)^a	85 (55–98)^a
YSR, T-scores	n = 14	n = 34
Total score	34 (4–81)	22.5 (0–86)
Internalizing	11.5 (0–32)	5.5 (0–30)
Externalizing	10 (2–31)	7.5 (0–45)
CBCL	n = 27	n = 61
Total score	15 (3–74)	11 (0–76)
Internalizing	4 (0–19)	4 (0–19)
Externalizing	5 (0–28)	4 (0–39)
CBCL Subscales
1 Withdrawn	1 (0–7)	1 (0–2)
2 Somatic complaints	1 (0–8)	1 (0–5)
3 Anxious/depressed^a	2 (0–10)^a	1 (0–5)^a
4 Social problems	1 (0–10)	0 (0–5)
5Thought problems	0 (0–2)	0 (0–0)
6 Attention problems	2 (0–10)	1 (0–7)
7 Delinquent behaviour	1 (0–5)	0 (0–4)
8 Aggressive behaviour	3 (0–24)	4 (0–19)
PedsQl – Parent report	n = 26	n = 27
Total score	78.3 (53.3–98.9)	84.7 (56.5–100.0)
Physical health	82.8 (43.8–100.0)	87.5 (59.3–100.0)
Emotional function	72.5 (35.0–100.0)	80.0 (55.0–100.0)
Social function	85.0 (45.0–100.0)	90.0 (65.0–100.0)
School function	80.0 (0.0–100.0)	80.0 (0.0–100.0)
Psychosocial function	80.0 (48.3 –98.3)	83.3 (45.0–100.0)

^a Difference between groups is significant at p < .05. Median (range) if not stated otherwise.

^b CGAS-scores from child interviews when given, or else from parent interviews.

Table 3. Adolescents assigned 46, XX females, 46, XY females and control group (age 10–18 years).

Median (min–max)	46, XX females (n = 8)	46, XY females (n = 7)	Females control (n = 17)
Age at study (years)	14 (10–18)	14 (10–18)	15 (14–16)
CGAS^a	n = 8	n = 7	n = 17
Total score*	68 (54–85)*	65 (40–90)*	85 (65–98)*
n (%); < 0–71	4 (50.0%)	5 (71.4%)	1 (5.9%)
YSR raw scores	n = 7	n = 5	n = 17
Total score*	50 (19–81)*	21 (4–38)*	24 (0–61)
Internalizing*	16 (3–32)*	4 (0–14)*	6 (0–30)
Externalizing	9 (4–31)	10 (2–11)	7 (0–24)
CAS	n = 7	n = 7	n = 17
Total score	32 (15–67)	13 (4–72)	13 (3–64)
CBCL raw scores	n = 7	n = 6	n = 17
Total score	12 (4–74)	14 (3–39)	10 (0–46)
Internalizing	5 (2–19)	4.50 (2–12)	4 (0–19)
Externalizing	3 (0–28)	6 (0–18)	3 (0–13)

Median (min–max).

* = p  < .05.

^a Either based on child interviews, or else parent interviews.

Table 4. Adolescents, 46, XX DSD vs. 46, XY DSD females, without control (age 10–18 years).

Median (min–max)	46, XX females (n = 8)	46, XY females (n = 7)
YSR subscales	n = 7	n = 5
Withdrawn*	4 (2–6)	2 (0–3)
Somatic complaints	4 (0–13)	1 (0–2)
Anxious/depressed	8 (0–14)	2 (0–9)
Social problems*	3 (0–6)	1 (0–2)
Thought problems	2 (1–10)	1 (0–5)
Attention problems*	7 (4–11)	1 (0–4)
Delinquent behavior	3 (0–9)	3 (1–4)
Aggressive behaviour	6 (4–22)	7 (1–8)
PedsQl – Child report	n = 6	n = 7
Total score	73.91 (41.30–92.39)	89.13 (71.74–95.65)
Physical health	90.62 (37.50–100)	96.87 (87.50–100)
Emotional function	55 (50–100)	80.0 (55–100)
Social function	90 (25–100)	100.0 (60–100)
School function	60 (55–75)	82.50 (55–90)
Psychosocial function	71.67 (43.33–88.33)	89.17 (56.67–93.33)
PedsQl – Parent report	n = 7	n = 6
Total score	85.87 (57.61–86.96)	80.43 (53.26–97.83)
Physical health	81.25 (65.62–96.87)	90.63 (43.75–100)
Emotional function	75 (55–80)	72.5 (35–90)
Social function	85 (45–100)	77.5 (65–100)
School function	80 (45–100)	72.50 (35–100)
Psychosocial function	80 (48.33–91.67)	74.17 (53.33–96.67)

Median (min–max).

*Difference between groups is significant at p < 0.05.

Table 5. Quality of Life (QOLS), distress, psychopathology and well-being (GHQ-30), follow-up. (N = 13).

	Median (min–max)
Age first inclusion	10 (5–18)
Age follow-up	26 (21–34)
QOLS
Total score	89 (49–111)
GHQ 30
Lickert score	29 (18–68)
Case score	7 (0–26)
Case, 6<^a	7 (53.8%)^1

^a For GHQ 30, clinically important psychopathology is defined as case total scores ≥6.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author.