XLH.

Anya Rothenbuhler1, Iva Gueorguieva2, Lydia Lichtenberger-Geslin3

  • 1AP-HP, INSERM, Endocrinology and Diabetes for Children, Physiologie et Physiopathologie Endocriniennes, Reference Center for Rare Disorders of Calcium and Phosphate Metabolism, Filière OSCAR, and Platform of Expertise for Rare Disorders, ERN for Rare Endocrine Disorders and ERN BOND, Bicêtre Paris Saclay Hospital, Le Kremlin-Bicêtre, France.

概括

该aXess计划改善了X链接低血症 (XLH) 患者的生活质量. 这项患者支持计划通过教育和持续的随访,增强了患者的福祉.

相关概念视频

Chronic Pancreatitis II: Collaborative Care01:29

Chronic Pancreatitis II: Collaborative Care

The management of chronic pancreatitis is multifaceted, involving a comprehensive approach that includes thorough assessment, diagnostic testing, and a variety of management strategies.
Assessment:
116
Acute Coronary Syndrome IV: Interprofessional Care01:28

Acute Coronary Syndrome IV: Interprofessional Care

IntroductionThe management of Acute Coronary Syndrome (ACS) aims to minimize myocardial damage, preserve myocardial function, and prevent complications.Initial ManagementInpatient management involves continuous cardiac monitoring, preferably in an ICU, focusing on blood pressure, serum sodium, potassium, and creatinine levels, and urine output. Ongoing pharmacologic management is crucial for stabilizing the patient.Supplemental Oxygen: Administer supplemental oxygen if oxygen saturation is...
13
The X̄ Chart00:58

The X̄ Chart

The  x̄ chart is a statistical tool for monitoring the means in a process.
The x̄ chart, often known as the individual control chart, is a crucial tool in statistical process control. It is designed to monitor process behavior and performance over time and is widely used in various industries to ensure that processes are operating at their optimum capacity and within specified limits.
A x̄ chart is constructed by plotting individual measurements of a quality...
154
Restorative Care01:19

Restorative Care

Restorative care is provided once a patient has been discharged from a healthcare facility and requires additional services. The additional services include home care, rehabilitation programs, and extended care. Restorative care centers help the patient regain their previous level of functioning or acquire a new level of functioning due to the incapacitating effects of a disease or a disability. It aims to assist patients in enhancing their quality of life by encouraging independence,...
2.0K
Patient-centered Care01:13

Patient-centered Care

Patient-centered care involves delivering care beyond inpatient hospitalization. Reflective practice can enhance a patient-centered approach. Reflective practice is a process of reasoning that considers all aspects of the present situation, including practicalities, learning from personal practice, and consideration of patient needs. Patients appreciate care decisions made while considering their input. Involving the patient in their care provides the patient with a sense of contribution rather...
2.1K
Documentation in Long-Term and Home Healthcare Setting01:29

Documentation in Long-Term and Home Healthcare Setting

Documentation in long-term care facilities and home healthcare settings is crucial for ensuring continuous, coordinated, and comprehensive care for patients. Each setting has its specific documentation processes and tools:
Long-Term Care Facilities
932