Group 6. Modalities and frequency of monitoring of patients with adrenal insufficiency. Patient education

被引:10
作者
Guignat, Laurence [1 ]
Proust-Lemoine, Emmanuelle [2 ]
Reznik, Yves [3 ,4 ]
Zenaty, Delphine [5 ]
机构
[1] CHU Paris Ctr, Ctr Reference Malad Rares Surrenale, Hop Cochin, Serv Malad Endocriniennes & Metab, F-75014 Paris, France
[2] Polyclin Aguilera, 21 Rue Estagnas, F-64200 Biarritz, France
[3] CHU Caen, Serv Endocrinol Diabete & Malad Metab, F-14033 Caen, France
[4] Univ Caen, F-14032 Caen, France
[5] Univ Paris Diderot, Hop Robert Debre, Ctr Reference Malad Endocriniennes Rares Croissan, AP HP,Serv Endocrinol Diabetol Pediat, 48 Blvd Serurier, F-75019 Paris, France
关键词
Consensus; Adrenal crisis; Addison's disease; Corticotropin deficiency; Adult; Children; Monitoring; Auto-immune polyendocrinopathy; Complications; Quality of life; Patient education program; Prevention; BONE-MINERAL DENSITY; QUALITY-OF-LIFE; GLUCOCORTICOID REPLACEMENT THERAPY; POLYENDOCRINE SYNDROME TYPE-1; SUBJECTIVE HEALTH-STATUS; ADDISONS-DISEASE; EXCESS MORTALITY; SHORT-TERM; HYDROCORTISONE; MANAGEMENT;
D O I
10.1016/j.ando.2017.10.009
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Patients with adrenal insufficiency require regular, specialised monitoring in order to optimise their replacement therapy, to detect signs of under- and over-dosage, and to examine for possible associated disorders (auto-immune disorders in the case of auto-immune primary adrenal insufficiency either isolated or as part of auto-immune polyendocrinopathy syndrome type 1; illnesses with underlying monogenic causes). The transition period between adolescence and adulthood represents an added risk of a breakdown in monitoring which requires particular attention from medical teams and coordination between adult and pediatric medical teams. It is essential to encourage patient autonomy in the management of their illness, notably their participation in treatment education programs, in particular programs that target avoidance of, or early treatment of acute adrenal insufficiency. The principal educational objectives for patients in such programs are: to be in possession of, and carry the necessary tools for their treatment in an emergency; to be able to identify situations of increased risk and the early signs of adrenal crisis; to know how to adjust their oral glucocorticoid treatment; to be capable of administering hydrocortisone by subcutaneous injection; to be able to predict and therefore adjust treatment to different situations (heat, physical exercise, travel) and to be able to correctly use the appropriate resources of the healthcare services. Other programs could also be developed to respond to needs and expectations of patients, notably concerning the adjustment of hydrocortisone dosage to avoid overdose in the context of chronic fatigue syndrome. (C) 2017 Published by Elsevier Masson SAS.
引用
收藏
页码:544 / 558
页数:15
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