A survey of care pathway and health-related quality of life impact for children with central precocious puberty

Abstract

Objective: To describe the timeline to diagnosis for children with central precocious puberty (CPP) and evaluate their psychosocial and health-related quality of life (HRQoL). Methods: A cross-sectional survey was used to prospectively collect data from caregivers, recruited via the MAGIC Foundation, of children with CPP. The control (non-CPP) group was recruited from a national panel of parents/caregivers. After completing a screening survey, respondents completed a burden of illness survey. Respondents in both groups completed the Pediatric Quality of Life Inventory (PedsQL) and Patient-Reported Outcomes Measurement Information System (PROMIS) peer relationship instruments. Results: Responses from 142 caregivers of children with and 300 without CPP were assessed. Mean time to treatment after a child's visit to the pediatric endocrinologist was 220 days and time from onset of symptoms to initiating treatment was approximately 2 years. Responses to HRQoL inventories were all lower in children with CPP versus non-CPP. Adjusted mean (± standard error) PedsQL total (65.3 ± 1.8 versus 75.7 ± 1.2), Psychosocial Health Summary (62.4 ± 1.8 versus 73.4 ± 1.2), and Physical Health Summary (70.7 ± 2.2 versus 79.9 ± 1.5) scores were significantly lower (p < .01) in CPP versus non-CPP group. PROMIS peer relationship T score (± standard error) was numerically lower for the CPP versus non-CPP group (45.4 ± 1.0 versus 47.4 ± 0.7, p ¼ .11). Conclusions: In clinical practice, there is a longer than expected delay between CPP symptom onset and referral to an endocrinologist and ultimate treatment. Children with CPP experience a substantial disease burden with a significant impact on emotional, social, and physical functioning compared with children without CPP.

Psychosocial adaptation to precocious puberty: A nursing support program

“…Mothers' anxiety and stress scores decreased significantly after the NSP. As was observed in this study, the literature shows that mothers of daughters with precocious puberty experience anxiety and stress (Klein et al, 2020; Lee & Kim, 2017; Lee et al, 2018; Patel, 2016; Schoelwer et al, 2015). Despite the high rate of anxiety and stress, only one interventional study was found in the literature on mothers' anxiety and stress.…”

“…Several studies in the literature suggest that medical treatment may prevent psychosocial problems by stopping the development of physical symptoms in girls with precocious puberty. However, several studies indicated no difference in the groups' posttreatment CBCL 6/18 scores (Klein et al, 2020; Schoelwer et al, 2015, 2017; Wojniusz et al, 2016), whereas others reported a significant increase (Kim & Lee, 2012; Xhrouet‐Heinrichs et al, 1997). Xhrouet‐Heinrichs et al (1997) reported high scores of withdrawal, anxiety/depression, and somatic complaints at the Child Behavior Checklist even 2 years after the start of treatment.…”

“…In addition, treatment is lengthy and requires regular drug use. If a girl is not covered by the insurance, her mother experiences a financial burden (Klein et al, 2020; Lee & Kim, 2017; Patel, 2016; Schoelwer et al, 2015). Studies and resources on precocious puberty suggest providing psychosocial support (Perry et al, 2017; Shawq et al, 2019; Temelturk et al, 2021; Thériault et al, 2019).…”

Puberte Prekoksun Psikososyal Etkileri

“…Puberte prekoks semptomlarının başlaması ile bir çocuk endokrinolojisi birimine sevk ve nihai tedavi arasında beklenenden daha uzun bir gecikme vardır. Bu durum hastalık yükünü arttırmaktadır (29). düşünülmekle birlikte yapılan çalışmalarda tedavi öncesi ve sonrası arasında annelerin anksiyete, stres değerlerinde anlamlı bir değişimin olmadığı ifade edilmiştir (10,33).…”

Gonadotropin-releasing hormone analog therapies for children with central precocious puberty in the United States

“…Boys with early-onset puberty may have behavioral difficulties and poor psychological adjustment ( 9 ), and girls may experience increased stress from early breast development and onset of menses ( 8 ). Indeed, girls who experience early menarche are also at risk of depressive symptoms and anti-social behaviors from adolescence into early-middle adulthood ( 10 ), as well as lower quality of life ( 11 , 12 ).…”