Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

Godbout, Ariane; Tejedor, Isabelle; Malivoir, Sabine; Polak, Michel; Touraine, Philippe

doi:10.1159/000343818

Cited by 41 publications

(32 citation statements)

References 42 publications

(22 reference statements)

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“…Indeed, it is suggested that transfer should be organized at the time of another change in the adolescent life, for example, the end of school (15). This age is close to what was observed in other studies of transitioning CO-GHD patients (5,11) and to the age considered as ideal by patients in an autoquestionnaire (16). In this study, age at transfer is independent from etiology, sex, or year of transfer.…”

Section: Discussionsupporting

confidence: 82%

Monocentric study of 112 consecutive patients with childhood onset GH deficiency around and after transition

Courtillot

Baudoin²,

Souich³

et al. 2013

European Journal of Endocrinology

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ObjectivesOur aim was to analyze a large cohort of childhood onset GH deficiency (CO-GHD) adults from a unique adult center, in order to analyze their clinical management and to study the metabolic and bone status in relation to GHD and to the other pituitary deficits, and to evaluate these parameters during the long-term follow-up.Design and methodsObservational retrospective cohort study on 112 consecutive CO-GHD adults transferred to our unit from 1st January 1994 to 1st March 2012. Evaluation of GHD in pediatrics and after transition was conducted following consensus guidelines. Data recorded from pediatric and adult files were GH doses, pituitary magnetic resonance imaging and function, and metabolic and bone status.ResultsMost patients presented with severe CO-GHD (64%) associated with other pituitary deficits (66%). CO-GHD was acquired in 56%, congenital in 33%, and idiopathic in 11% cases. Most patients (83%) stopped GH before transfer, at 16.3 years (median), despite persistence of GHD. Median age at transfer was 19.4 years. After transfer, GHD persisted in 101 patients and four of the 11 resolutive GHD were non idiopathic. IGF1 level was <−2 SDS in 70% of treated patients at transfer and in 34% of them after 3 years of treatment. Follow-up showed improvement in lipid profile and bone mineral density in severely persistent GHD patients under GH therapy. In multivariate analysis, the associated pituitary deficits seemed stronger determinant factors of metabolic and bone status than GHD.ConclusionsThis study raises concern about discontinuation of GH replacement therapy in pediatrics in severely persistent GHD patients and about the often insufficient dose of GH in the treatment of adult patients.

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Section: Discussionsupporting

confidence: 82%

Monocentric study of 112 consecutive patients with childhood onset GH deficiency around and after transition

Courtillot

Baudoin²,

Souich³

et al. 2013

European Journal of Endocrinology

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“…Transition of young adults from paediatric care to adult care is a well-recognized challenge for patients with chronic endocrine conditions 247,248 including CHH. 175 For patients with CHH, discontinuation of care and resulting gaps in treatment can have considerable health consequences.…”

Section: Transitional Care For Chhmentioning

confidence: 99%

European Consensus Statement on congenital hypogonadotropic hypogonadism—pathogenesis, diagnosis and treatment

et al. 2015

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| Congenital hypogonadotropic hypogonadism (CHH) is a rare disorder caused by the deficient production, secretion or action of gonadotropin-releasing hormone (GnRH), which is the master hormone regulating the reproductive axis. CHH is clinically and genetically heterogeneous, with >25 different causal genes identified to date. Clinically, the disorder is characterized by an absence of puberty and infertility. The association of CHH with a defective sense of smell (anosmia or hyposmia), which is found in ~50% of patients with CHH is termed Kallmann syndrome and results from incomplete embryonic migration of GnRHsynthesizing neurons. CHH can be challenging to diagnose, particularly when attempting to differentiate it from constitutional delay of puberty. A timely diagnosis and treatment to induce puberty can be beneficial for sexual, bone and metabolic health, and might help minimize some of the psychological effects of CHH. In most cases, fertility can be induced using specialized treatment regimens and several predictors of outcome have been identified. Patients typically require lifelong treatment, yet ~10-20% of patients exhibit a spontaneous recovery of reproductive function. This Consensus Statement summarizes approaches for the diagnosis and treatment of CHH and discusses important unanswered questions in the field.

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“…The transition from pediatric to adult care is a challenge for patients with chronic endocrine conditions with different disorders having condition-specific needs (85). Too often the transition process is characterized by cracks and gaps in care as reported for patients with TS (86) and CHH (82).…”

Section: Transition Of Adolescents To Adult Carementioning

confidence: 99%

TRANSITION IN ENDOCRINOLOGY: Hypogonadism in adolescence

Dwyer

Phan-Hug

Hauschild

et al. 2015

European Journal of Endocrinology

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Puberty is a remarkable developmental process with the activation of the hypothalamic-pituitary-gonadal axis culminating in reproductive capacity. It is accompanied by cognitive, psychological, emotional, and sociocultural changes. There is wide variation in the timing of pubertal onset, and this process is affected by genetic and environmental influences. Disrupted puberty (delayed or absent) leading to hypogonadism may be caused by congenital or acquired etiologies and can have significant impact on both physical and psychosocial well-being. While adolescence is a time of growing autonomy and independence, it is also a time of vulnerability and thus, the impact of hypogonadism can have lasting effects. This review highlights the various forms of hypogonadism in adolescence and the clinical challenges in differentiating normal variants of puberty from pathological states. In addition, hormonal treatment, concerns regarding fertility, emotional support, and effective transition to adult care are discussed.

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Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

Cited by 41 publications

References 42 publications

Monocentric study of 112 consecutive patients with childhood onset GH deficiency around and after transition

Monocentric study of 112 consecutive patients with childhood onset GH deficiency around and after transition

European Consensus Statement on congenital hypogonadotropic hypogonadism—pathogenesis, diagnosis and treatment

TRANSITION IN ENDOCRINOLOGY: Hypogonadism in adolescence

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