CRANFORD, N.J., Sept. 10, 2014 /PRNewswire/ -- In light of the extensive issues facing patients and carers affected by rare disease, Atlantis Healthcare has published a white paper to educate the healthcare industry about their unmet needs, along with proven support approaches to address the challenges found in this important, yet often overlooked, area of care.
Living with any chronic condition can be demanding, but rare diseases bring a unique set of obstacles for patients and their carers, such as social stigma, delayed diagnosis, access to the right treatment and limited information and support. An online survey conducted by a national patient organization, Rare Diseases UK, identified a range of difficulties experienced by people with a rare disease, including delays in receiving a diagnosis, experiences of being misdiagnosed and problems obtaining specialist care and treatment1.
The 21-page white paper, "Unique Patient Challenges and Support Solutions in Rare Disease," was authored by a team of health psychology experts. The report features a comprehensive overview of the category, including patient insights, an interview with a Genzyme pharmaceutical executive, a review of barriers and facilitators of adherence, and a summary of successful interventions.
The support provided for those affected by a rare disease should be flexible and long-standing, according to Dr. Sumaira Malik, a Health Psychology Specialist from Atlantis Healthcare. Dr. Malik is featured in the white paper and has conducted specific research into the experience of living with rare genetic diseases.
"A long-term strategy that can accommodate the changing support needs of patients as they progress from childhood to adulthood must be a consideration in the treatment of rare disease," says Dr. Malik.
Approximately 80 percent of rare diseases are genetic, with 75 percent affecting children. As a result, many children are diagnosed either at birth or during their early years, and will then spend the rest of their lives coping with the specific challenges that accompany their condition.
Dr. Malik explains, "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. 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."
To help overcome such challenges, Dr. Malik cites peer support as vital because it enables people to connect with others who can empathize - helping them to overcome unhelpful beliefs about their condition and treatment, which are key influencers of nonadherence in rare disease.
"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," suggests Dr. Malik. This highlights the unique opportunity to support patients and their carers via a combination of online communities and one-to-one support solutions.
Further research in the white paper shows potential for web-based strategies in the delivery of self-management interventions, and shares specific case studies of proven interventions in cystic fibrosis.
Atlantis Healthcare is a global market leader in the provision of unique support solutions and innovative strategies to drive effective patient engagement.
1Rare Disease UK – the National Alliance for People with Rare Diseases and All Who Support Them. http://www.raredisease.org.uk/index.htm. Accessed 14th June, 2014.
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SOURCE Atlantis Healthcare