Overview of the Study
This study looks at the impacts of rare diseases on the many different facets of the lives of patients and caregivers alike using surveys. Some of the findings are in line with the expectations surrounding rare diseases. However, some topics may not readily be apparent when talking about these illnesses.
The study also touches briefly on how the patients and caregivers view the Affordable Care Act in terms of how it made a difference in their care.
Topics Covered in the Study
The survey used in the study asked different questions relating to the following topics.
- The impact of rare diseases on family
- The emotional impact of rare diseases
- The impact of rare diseases on finances
- The impact of rare diseases on employment
- The educational impact of rare diseases
- The impact of rare diseases on social interaction
- The effect of the Affordable Care Act or Obamacare
Summary of the Study
Here are a few key findings after the study has concluded.
- The impact of rare diseases on patients and caregivers is seen in many different facets of their lives.
- The time required to deal with the rare diseases of their loved ones takes time away from spending it on personal activities and family interactions.
- The study found that the impact on emotion of these rare diseases is especially high. Relatively more caregivers get anxiety, while more patients feel depressed.
- According to numerous families, their financial situations have been negatively affected when dealing with the rare diseases. Many patients and caregivers end up forgoing opportunities in both employment and education. Many also opt to work part-time instead of full-time.
- Several patients and caregivers become frustrated over the lack of knowledge or awareness about rare diseases of many professionals in the healthcare system.
- A majority of the patients and caregivers surveyed do not feel that the Affordable Care Act has made any difference in their healthcare experience.
Using a survey, this rare disease impact case study aimed to show the impacts of rare diseases on the lives of both patients and caregivers. The questions focused on the different aspects of their lives.
Looking at the results, numerous families of patients and caregivers feel that they are negatively impacted by rare diseases overall. Their emotional, financial, educational, social, employment, and personal lives suffer because of rare diseases and the general lack of understanding surrounding them.
The respondents also concluded that the Affordable Care Act has not been helping them manage these diseases.