Occupational therapy in variant transthyretin amyloidosis in the Iberian Peninsula. A qualitative study

Abstract

Occupational therapy is part of integrated care in health services. However, there is little research on how it is applied to rare diseases. The aim of this study was to investigate the occupational therapy situation and services offered to patients diagnosed with variant transthyretin amyloidosis in Portugal and Spain. A structured interview was carried out by an occupational therapist and a genetic counsellor with six Portuguese and four Spanish occupational therapists to collect opinions about the reality of occupational therapy and variant transthyretin amyloidosis. No occupational therapist working with variant transthyretin amyloidosis or other rare diseases was found. Therefore, general aspects of the discipline were discussed in order to study the situation of this profession in general terms. Four interrelated dimensions were considered. The first was a general perspective on psychosocial resources in health care, addressing questions related to the interventions offered to patients; the second and third were professional perspectives, asking questions about the role of occupational therapy in the Portuguese and Spanish psychosocial realities; and the fourth dimension was a social perspective, addressing questions about the role of occupational therapy in the Portuguese and Spanish psychosocial realities. Although this approach is not designed to generalise, it opens up a relevant avenue to explore in this area. The results highlights the importance of further research to develop and implement the discipline of occupational therapy in a multidisciplinary approach after variant transthyretin amyloidosis diagnosis, creating potential strategies to promote its use.