Daily life in patients with hereditary transthyretin amyloidosis: a qualitative study. PC29 (#1)

Author Listing - Lead/ Submitting Author (we will be communicating with this individual): Name, Institution, City and State where the work was done. Co-authors will be added in a separate section.
Aina Gayà-Barroso 1,2, Juan González-Moreno 1,2, Adrián Rodríguez 1,2, Tomás Ripoll-Vera 2,3, Inés Losada López 1,2, Milena Paneque 4,5,6, and Eugenia Cisneros-Barroso 1,2,

1. Internal Medicine Department. Son Llàtzer University Hospital. Palma de Mallorca. Spain.
2. Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, Palma de Mallorca, Spain.
3. Cardiology Department. Son Llàtzer University Hospital. Palma de Mallorca. Spain.
4. Institute for Research and Innovation in Health (i3S), University of Porto, Porto, Portugal.
5. Center for Predictive and Preventive Genetics, Institute for Molecular and Cell Biology (CGPP-IBMC), Porto, Portugal.
6. Institute of Biomedical Sciences Abel Salazar, University of Porto, Porto, Portugal.

Main Body of the Abstract
Background:
Variant transthyretin amyloidosis (ATTRv) is a rare genetic disease that affects patients' quality of life by affecting various organs and tissues. Despite a wealth of research on medical and psychosocial interventions, the impact of occupational therapy on patients with ATTRv is not well understood. This research focuses on the assessment of activities of daily living and occupations as a fundamental tool in the management of patients after diagnosis.
Objective:
The aim of this study was to develop an occupational therapy programme for the improvement of daily functioning and quality of life in patients with ATTRv.
Methods:
After an initial semi-structured interview, fourteen patients with ATTRv were enrolled in the study. The occupational therapist worked with the patient to develop short and medium term occupational goals, based on the Model of Human Occupation. During the six-month intervention period, weekly or ten-day sessions were held to monitor and adjust the guidelines. Outcomes were measured using scores for activities of daily living and psychological well-being.
Results:
The results showed that twelve patients stayed the same in their activities of daily living, two got worse and eight improved their psychological scores and the occupational situation. The study highlights the importance of early intervention and further research into the effectiveness of occupational therapy interventions for patients with ATTRv. It also notes that patients who received occupational therapy intervention reported that six months was not enough and emphasises the fundamental role of the therapist in providing motivation, facilitating meaningful activities, improving daily living and routines.