Study On The Quality Of Life Of Children With Precocious Puberty And Its Influence Factors In Chongqing,China

Background:Precocious puberty（PP）has become one of common endocrine diseases because of its high incidence in recent years,which clinically defined as the early appearance of secondary sexual characteristics before age 8 in girls and age 9 in boys.PP mainly influences patients’final adult height,gonadotropin-releasing hormone analogs（Gn RHa）is standard treatment for PP,its effect on final adult height is obvious.However,long-term treatment,obesity and breast development caused by the disease and feelings of pain from growth hormone injection everyday to some extent impact patients’social and mental health,ultimately impair their quality of life（Qo L）.Children experienced PP were more likely to express alcoholism and drug abuse than healthy children in adulthood.Numerous studies focused on improving patients’final adult height,but the evaluation of their Qo L is rarely reported.Therefore,this study aims to explore the Qo L of children with idiopathic central precocious puberty（ICPP）,and to find the influencing factors of Qo L using both quantitative and qualitative studies.These findings can provide theoretical support for clinical staff in improving patients’Qo L.Objective:1.To investigate the Qo L of ICPP patients compared with normal children,and to find the impact of demographic questionnaire,family impact and self-concept on Qo L of ICPP patients.2.To analyze the relationships between Qo L of ICPP according to the case control study.3.According to the quantitative research results,the study aims to find the reason of low Qo L in children with ICPP.Methods:1.Case-control study:A case group of 134 ICPP patients aged 5 to 12years and their caregivers were recruited from Children’s Hospital of Chongqing Medical University from April to September 2019 using the convenience sample method.A total of 210 participants were selected as controls at the same time with the matching principles of same gender and age and all the participants lived in Chongqing.All the participants completed the demographic questionnaire,Peds QL^TM4.0 General Core Module,Peds QL^TMFamily Impact Module and Piers-Harris Children’s Self-concept Scale.2.Descriptive qualitative research:Previous quantitative research showed that ICPP patients cared by unemployed caregivers had a lower Qo L,unemployed caregivers were mainly housewives in this study.Therefore,a total of 15 main caregivers of ICPP patients were recruited from Children’s Hospital of Chongqing Medical University using the purposive sampling method,main caregivers meet the criterion of housewives.The care experience of housewives in caring a children with ICPP was interviewed by a semi-structured questionnaire.Data was analyzed and summarized according to Colaizzi’s 7-step analysis method with NVIVO 11.0 software.Results:1.A total of 344 participants were included in the final analysis with20 participants excluded,of whom 134 were in study group and 210 were controls.Variables of height and BMI were different between the two groups（P<0.05）,which accord with the clinic manifestation of ICPP.number of children,parents’educational level,employment status,and family monthly income were significantly different between the two groups（P<0.05）,which accord with epidemiologic characteristics of ICPP.2.Children with ICPP scored significantly lower than controls in all domains of GCS except physical functioning.In particular,the two groups were significantly different in emotional functioning scores（77.39±17.97vs 84.12±14.35,P<0.001）.ICPP patients had lower level of self-concept compared with healthy children（57.34±12.53 vs 61.41±10.40,P<0.05）,especially in the domain of physical appearance and attributes was significantly different.ICPP had a negative impact on Qo L of caregivers and family functioning（70.95±14.41vs 80.07±13.98,P<0.05）.3.There were multiple factors associated with HRQo L of ICPP patients.Age of patients,type of medical treatment,employment status of caregivers,physical appearance and attributes,anxiety,intellectual and school status,gregariousness and Qo L of caregivers were all significantly associated with some of domains of GCS in case group（all P<0.05）.4.Higher score of psychosocial health in children indicated lower incidence of ICPP（OR=0.945,95%CI:0.916～0.975）.5.The care experience of housewives in caring a child with ICPP was as follows:complicated psychological experience,weak social support and heavy care burden.Among them,the complicated psychological experience included:worry and anxiety,confusion and depression,acceptance and trust.The weak social support included:objective support is mostly information support,negative subjective support.The heavy care burden included:daily life was influenced by ICPP,heavy financial burden,difficulties of disease management.Conclusions:1.ICPP patients have low Qo L,especially in emotional functioning.ICPP patient’s self-concept is at a lower level,which affects patients’behavior,study and social ability.ICPP has a negative impact on the Qo L of parents and family functioning.2.Younger patients treat with Gn RHa,employment status of caregivers,negative awareness of physical appearance and attributes,anxiety,gregariousness and intellectual and school status,negative impact on Qo L of caregivers were associated with lower Qo L in children with ICPP.3.Unhealthy family circumstances aggravate high pressure of mental and social in children,which made neuropsychological disfunction,ultimately caused ICPP.4.Housewives have more bad emotions when caring a child with ICPP,and they also are responsible for the disease management of patient alone alone,weak social support can not provide protection for them under the condition of disease stress,but aggravate their negative emotional experience,seriously affect the quality of nursing,and ultimately reduce the Qo L of children with ICPP.