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~Where are families experiencing challenges with accessing desired care and coverage? (drugs, assistive devices, services) Is it different for the different phenotypes of the disease?~What is the challenge? (financial, time, stress, others)~What is the life impact of that challenge? (work and educational impact, lack or delay of treatment, others)
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