Cystic fibrosis is among the numerous chronic conditions categorized as rare diseases. As many cystic fibrosis patients know, a unique set of burdens are placed upon themselves and their caregivers, and Atlantis Healthcare is working to bring light to patients’ hardships. Recently, Atlantis Healthcare released a white paper with intentions of educating the healthcare industry about unmet needs of patients with rare diseases, with cystic fibrosis included among them.
Within the 21-page paper entitled, “Unique Patient Challenges and Support Solutions in Rare Disease,” a team of health psychology experts identified obstacles to patients such as social stigmas, delayed diagnoses, access to proper treatments, and limited support. Their findings were gained through interviews with patients and a pharmaceutical executive from Genzyme, a company that collaborates with the Cystic Fibrosis Foundation to discover new cystic fibrosis treatments.
The report placed an emphasis on patient-centered treatment and gave suggestions to improve patient compliance for therapies. “The initial focus of support must be on helping parents to come to terms with the diagnosis and to accept the treatment and dietary requirements to manage the condition,” stated Dr. Sumaira Malik, a Heath Psychology Specialist at Atlantis Healthcare, in a news release from the company. “However, as children reach their teenage years and become more independent, their desire to ‘fit in’ dramatically increases, which will often lead to their engaging in ‘risk-taking’ behavior — resulting in nonadherence to treatment and lifestyle guidelines.” Adolescent cystic fibrosis patients are especially susceptible to these pressures and can suffer from reduced health-related quality of life.
Dr. Malik believes these challenges can be overcome through peer support and guidance from others who can empathize. “An online community would be great — particularly when you’re dealing with a very rare disease, where in some countries there may only be a few families affected by the condition,” said Dr. Malik.
Almost all (75%) of rare diseases affect children, and 80% of these are of genetic origin, such as cystic fibrosis. The report demonstrates the potential for web-based strategies to deliver self-management interventions. It has already been suggested that game-based apps can improve cystic fibrosis patient compliance to treatment.
Overall, Atlantis Healthcare seeks to underscore the importance of helping patients with rare, genetic conditions that negatively affect quality of life. This white paper is a means for spreading the word and increasing awareness about hardships and their potential remedies.