Understanding Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick Disease Through the Eyes of Patients and Families
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 76
- 试验地点
- 1
- 主要终点
- Health Insurance Coverage
研究概览
简要总结
This study is a US based qualitative PRO research study to document the health insurance literacy as well as the patient experience in Niemann-Pick as it relates to accessing desired care, services and medications for patients.
The outcome of this research will be used to inform various other workstreams as NNPDF works to assist families.
The core research objectives are to understand the following from Niemann-Pick patients and their families in the US
详细描述
This study is a US based qualitative PRO research study to document the health insurance literacy as well as the patient experience in Niemann-Pick as it relates to accessing desired care, services and medications for patients.
The outcome of this research will be used to inform various other workstreams as NNPDF works to assist families.
The core research objectives are to understand the following from Niemann-Pick patients and their families in the US;
-
Level of health insurance literacy through assessment of health insurance terminology, and self-reported insights regarding information seeking, document literacy and cognitive skills
-
If they have healthcare insurance, and if not, why not
-
Types (including name) of insurance by which Niemann-Pick families are covered
-
Information regarding Medicaid Waivers
-
Attributes of insurance plans including, but not limited to;
-
Deductible amounts for individual and family
-
Out of pocket maximums for individual and family
-
Insurance premiums
-
Associated Health Savings Accounts
-
Associated Cost Sharing requirements
-
Services, drugs and assistive devices covered
-
What the perceived out-of-pocket costs are for Niemann-Pick families (annually)
-
When out-of-pocket maximums are perceived to be met for Niemann-Pick families
-
Patient and HCP experience in terms of challenges with accessing desired care and coverage
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Participant must be a person with Niemann-Pick disease who is 18 years or older or The parent/legal guardian of a person with Niemann-Pick disease. Please note: Parents whose child has passed on are able to participate in the RSVP. Parents whose child has passed on in the last two years are also able to participate in the interview. Please note that only one family member will be eligible to complete the RSVP and interview for one family.
- •Confirmed diagnosis of Niemann-Pick disease, confirmed by membership in the NNPDF or by provision of a proof of disease form
- •Able to read, write and communicate in English
- •Able to grant informed consent
- •Willing to complete a survey and RSVP, and to participate in a 30-minute telephone interview
- •Ability to view or receive a document from the interviewer before or during the interview (web browser, ability to receive a text, fax or document by mail)
排除标准
- •Inability to meet any of the above 6 criteria
结局指标
主要结局
Health Insurance Coverage
时间窗: July 2020- September
Health insurance coverage will be measured by the different multiple choice and open-ended questions based on the services available under the participants' insurance plan as well as their reported difficulty with navigating their plan and obtaining what they need for Niemann-Pick
Health Insurance Literacy
时间窗: July 2020- September
Health insurance literacy will be measured by a score on a brief quiz regarding health insurance key terms as well as self-ratings regarding various aspects of the participants' ability to navigate and understand insurance
次要结局
未报告次要终点