Abstract

BackgroundIdiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP.MethodsWe conducted a case–control study in Chongqing, China. A case group of 134 children with ICPP aged 5–12 years and their caregivers was recruited from a children’s hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQLTM4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study.ResultsChildren with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288–1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05).ConclusionsChildren with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.

Highlights

  • Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL)

  • Yang et al Health Qual Life Outcomes (2021) 19:171 with Gonadotropin releasing hormone agonists (GnRHa) alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL

  • Our study revealed that children with ICPP performed worse than healthy peers in emotional functioning, social functioning, school functioning, psychosocial health, and total HRQoL using the ­PedsQLTM4.0 Generic Core Scales (GCS) instrument

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Summary

Introduction

Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). Idiopathic central precocious puberty (ICPP) is defined as the development of secondary sexual characteristics following the activation of the hypothalamic– pituitary–gonadal axis before age 8 in girls and age 9 in boys of unknown etiology after a diagnostic evaluation [1], with an annual incidence of 1/5000 to 1/10,000 investigated by National Institute of Child Health and Human Development in 1982 [2]. Numerous studies showed that GnRHa therapy can obviously improve adult final height [6, 7], but the consensus on the use of GnRHa stressed the importance of preventing mental and social problems associated with sexual development [5]. Under the background of bio-psycho-social model, it is necessary for clinic staff to comprehensive evaluate patients’ health status that go beyond physical well-being

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