This study aimed to describe HRQoL of both children and parents in a Chinese DSD cohort, evaluate caregiver burden, and employ the latent profile analysis (LPA) to identify distinct parental HRQoL profiles and their associated determinants. This study included 147 parents of children with DSD and 519 parents of healthy controls. Group differences in HRQoL were analyzed using t-tests or one-way analysis of variance (ANOVA). Multivariate regression identified predictors of parental HRQoL, and LPA classified parental HRQoL profiles with multinomial logistic regression used to assess their associated factors. Children with DSD had similar HRQoL scores to healthy controls (p > 0.05), but their caregivers showed significant impairments across all domains (p < 0.05). In multivariate analysis, caregiver burden and child HRQoL were significantly associated with parental HRQoL (p < 0.05), with caregiver burden mediating 60.8% of the effect of child HRQoL on parental HRQoL. Latent profile analysis identified three parental HRQoL profiles: “Poor” (24.5%), “Moderate” (35.4%), and “Good” (40.1%). Higher caregiver burden increased the odds of “Poor” and “Moderate” profiles (OR = 1.52 and 1.26, both p < 0.001), while better child HRQoL protected against “Poor” profile membership (OR = 0.91, p = 0.002). Conclusions: This study reveals that HRQoL of children with DSD is comparable to the healthy controls, while their parents experience significant impairments in HRQoL, primarily determined by caregiver burden and the child’s HRQoL. As caregiver burden mediates the impact of child HRQoL on parental HRQoL, clinical care must adopt a family-centered approach focusing on burden alleviation.<Table Float="No" ID="Taba"> <tgroup cols="1"> <colspec align="left" colname="c1" colnum="1" /> <tbody> <row> <entry align="left" colname="c1"> What is Known: • Children with DSD face complex medical and psychosocial challenges that may affect HRQoL in both patients and their families. • Their caregivers often experience significant psychological burden, which can negatively impact their own well-being. </entry> </row> <row> <entry align="left" colname="c1"> What is New: • In a Chinese DSD cohort, children’s HRQoL was comparable to healthy controls, whereas their parents exhibited significant and heterogeneous HRQoL impairments across all domains, with three distinct parental HRQoL profiles identified via latent profile analysis. • Caregiver burden mediated 60.8% of the effect of child HRQoL on parental HRQoL, highlighting burden alleviation as a priority target in family-centered clinical care for DSD. </entry> </row> </tbody> </tgroup> </Table>

Health-related quality of life and caregiver burden in Chinese families with disorders of sex development: a person-centered analysis

期刊论文
发表日期：

2026年6月15日

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Zhihui Zheng,
Lejing Guan,
Meiying Gao,
Hongjuan Tian,
Lizhen Ye,
Xing Wei,
Xiaofei Chen,
Tijesuni Ademuwagun,
Kyla Zhang,
Daxing Tang,
Guannan Bai

摘要

This study aimed to describe HRQoL of both children and parents in a Chinese DSD cohort, evaluate caregiver burden, and employ the latent profile analysis (LPA) to identify distinct parental HRQoL profiles and their associated determinants. This study included 147 parents of children with DSD and 519 parents of healthy controls. Group differences in HRQoL were analyzed using t-tests or one-way analysis of variance (ANOVA). Multivariate regression identified predictors of parental HRQoL, and LPA classified parental HRQoL profiles with multinomial logistic regression used to assess their associated factors. Children with DSD had similar HRQoL scores to healthy controls (p > 0.05), but their caregivers showed significant impairments across all domains (p < 0.05). In multivariate analysis, caregiver burden and child HRQoL were significantly associated with parental HRQoL (p < 0.05), with caregiver burden mediating 60.8% of the effect of child HRQoL on parental HRQoL. Latent profile analysis identified three parental HRQoL profiles: “Poor” (24.5%), “Moderate” (35.4%), and “Good” (40.1%). Higher caregiver burden increased the odds of “Poor” and “Moderate” profiles (OR = 1.52 and 1.26, both p < 0.001), while better child HRQoL protected against “Poor” profile membership (OR = 0.91, p = 0.002).

Conclusions: This study reveals that HRQoL of children with DSD is comparable to the healthy controls, while their parents experience significant impairments in HRQoL, primarily determined by caregiver burden and the child’s HRQoL. As caregiver burden mediates the impact of child HRQoL on parental HRQoL, clinical care must adopt a family-centered approach focusing on burden alleviation.

What is Known:

• Children with DSD face complex medical and psychosocial challenges that may affect HRQoL in both patients and their families.

• Their caregivers often experience significant psychological burden, which can negatively impact their own well-being.

What is New:

• In a Chinese DSD cohort, children’s HRQoL was comparable to healthy controls, whereas their parents exhibited significant and heterogeneous HRQoL impairments across all domains, with three distinct parental HRQoL profiles identified via latent profile analysis.

• Caregiver burden mediated 60.8% of the effect of child HRQoL on parental HRQoL, highlighting burden alleviation as a priority target in family-centered clinical care for DSD.