A recent study published in BMC Health Services Research explores the real-world experiences and challenges faced by individuals living with transthyretin amyloidosis (ATTR), the broader condition that transthyretin amyloid cardiomyopathy (ATTR-CM) falls under.
To capture these insights, researchers organized a focus group discussion involving six patients with ATTR from various regions of Spain as part of the CARABELA-ATTR initiative. The goal of this initiative is to improve the Spanish ATTR care model and enhance patient outcomes and quality of life by integrating insights from clinicians, specialists and patients.
During the discussions, patients reported a frustratingly long wait to find out what is wrong, with the wait for a correct diagnosis often lasting 1.5 to 5 years. Many described how early symptoms were frequently overlooked or misunderstood by doctors unfamiliar with the disease.
Even after the relief of finally having a name for their condition, patients expressed dissatisfaction with how specialists often work in isolation rather than as a team. “Sometimes I feel like they (the specialists) are each doing their own thing (…). I wish there were a bit more communication between them,” one of the participants noted.
They described a “fragmented” system with poor coordination, which sometimes led to administrative hurdles and long delays in initiating essential treatments.
Patients said the emotional toll of living with ATTR is just as heavy as the physical one. Patients shared stories of deep anxiety, frustration and a constant fear of what the future holds for them and their loved ones. Because they often felt gaps in the information provided by their clinics, many reported turning to their own research or joining advocacy groups to find the answers and emotional support they needed.
However, those who were treated at specialized, multidisciplinary centers described a much more positive experience, noting that they felt safer and better cared for when a team of experts worked together.
“The experiences of ATTR patients offer invaluable insights for reshaping care models
with a more holistic and patient-centred vision in the context of personalized
medicine,” the researchers concluded. They emphasized that alongside medical treatment, psychological support and patient education are essential to ease the daily burden of the disease and achieve the best possible health outcomes.
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