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

Abstract Background Idiopathic 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. Methods We 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. Results Children 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). Conclusions Children 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.

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The Association Between Family Impact and Health-Related Quality of Life of Children With Idiopathic Central Precocious Puberty

10.21203/rs.3.rs-211762/v1 ◽

2021 ◽

Author(s):

hong yang ◽

shunqing luo ◽

xiaohua liang ◽

qin lin ◽

ting cheng ◽

...

Keyword(s):

Quality Of Life ◽

Family Functioning ◽

Precocious Puberty ◽

Central Precocious Puberty ◽

Case Group ◽

Family Impact ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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 impact of ICPP on the HRQoL of children and parents; its impact on family functioning; and to determine the association between patient HRQoL and family impact, comprising the HRQoL of parents and family functioning.MethodsWe conducted a case-control study in Chongqing, China. A case group of 134 children with ICPP aged 5 to 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 schools were selected as controls. Patient HRQoL was assessed by administering the PedsQLTM4.0 Generic Core Scales (GCS). Impacts of ICPP on parental HRQoL and family functioning were evaluated by the PedsQLTM Family Impact Module (FIM).ResultsA total of 344 subjects were enrolled, with 134 in the case group and 210 in the control group. Children 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 (77.39±17.97 vs 84.12±14.35, P<0.001). Compared with controls, ICPP families had lower scores in all dimensions of the PedsQLTM4.0 FIM scale. In the case group, patient HRQoL was significantly correlated with family impact scores (r= 0.224, P<0.05), but not with the dimensions of social functioning, communication, worry, and family relationships. ConclusionsICPP worsens the HRQoL of patients and their parents, and also impairs family functioning. In addition, parents with higher HRQoL scores and family functioning generally reported higher HRQoL of children with ICPP. These findings suggest that health care professionals should identify and monitor ICPP patients’ psychosocial problems proactively, and provide targeted interventions to reduce family impact and thereby improve patient HRQoL.

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Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration

10.21203/rs.3.rs-450002/v2 ◽

2021 ◽

Author(s):

Caroline Nguyen ◽

Elisabeth Celestin ◽

Delphine Chambolle ◽

Agnès Linglart ◽

Martin Biosse Duplan ◽

...

Keyword(s):

Quality Of Life ◽

Health Care ◽

Oral Health ◽

Care Pathway ◽

Clinical Signs ◽

Oral Health Care ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Abstract Background. X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth. The objective of our study was to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients followed in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology. Methods. This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. Results. Twenty-one patients were included in the study. The topics brought up exceeded the initial objectives as the patients mostly addressed the alteration of their oral and general quality of life; a very chaotic oral health care pathway with oral health professionals not aware of their pathology; consequences on their social, professional, and school integration; access to care complicated by financial factors. Patients declared the importance of having a multidisciplinary team around them, including medical and dental professionals.Conclusions. The variety of manifestations in patients with XLH necessitates a high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden. Oral health care pathways are very chaotic for patients who have difficulty finding professionals with sufficient knowledge of the disease. OHRQoL is therefore diminished. This situation improves when patients enter a coordinated care network.

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