Employment Retention Issues for Patient With Pseudoxanthoma Elasticum
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 99
- 试验地点
- 1
- 主要终点
- Percentage of job loss due to PXE
研究概览
简要总结
Pseudoxanthoma elasticum (PXE) is a rare, autosomal recessive genetic disease characterized by progressive calcification and fragmentation of elastic fibers in connective tissues. PXE primarily affect the skin, retina and arterial walls. Given the age of onset and progression of the disease, the consequences of PXE affect a large number of patients of working age and are therefore likely to have an impact on their professional career and job retention.
To our knowledge, there are no studies on the occupational impact of PXE.
详细描述
This is an epidemiological, descriptive and analytical, cross-sectional, monocentric study, carried out by telephone questionnaire on the national cohort of the PXE Reference Center in the Dermatology Department of the Angers University Hospital.
Eligible subjects will be pre-selected by the study investigators on the basis of the medical file. A letter of information about the study will be sent to all the pre-selected eligible patients, with the exception of patients who have expressed an objection to the processing of their data for research purposes.
The investigators will contact eligible patients by telephone approximately 2 weeks after the mailing of the information letter. During this telephone call, the investigator will answer any questions the patient may have about the study and will collect the patient's non-objection to participate in the study and their responses to the questionnaire.
In the absence of a validated questionnaire to meet the objectives of the study, a questionnaire was created.
This questionnaire was tested in order to verify its feasibility and clarity. Medical data (age at diagnosis, age at referral to the Reference Centre, organ damage and clinical manifestations present at the time of the survey, treatments, etc.) will be collected from the medical file and the answers to the questionnaire will be collected by telephone on paper. Data will be collected in a coded manner. A correspondence list will be kept, under the responsibility of the principal investigator.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Retrospective
入排标准
- 年龄范围
- 18 Years 至 64 Years(Adult)
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Working age / Unemployed / Retired less than 2 years
排除标准
- •Presence of one or more physical or psychological comorbidity likely to have an impact on the career path and job retention.
- •Poor understanding of the french language
- •Objection to participating in research
结局指标
主要结局
Percentage of job loss due to PXE
时间窗: At enrolment
Percentage of patients whose employment was modified or discontinued due to PXE.
次要结局
- Percentage of job loss due to the skin impact(At enrolment)
- Percentage of job loss due to the visual impact(At enrolment)
- Percentage of job loss due to the vascular impact(At enrolment)
