Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain.
Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain.
Int J Environ Res Public Health. 2022 Apr 7;19(8):4464. doi: 10.3390/ijerph19084464.
This study was designed to investigate the global utilization of occupational therapy (OT) services by patients with hereditary transthyretin amyloidosis (ATTRv) in Spain. The main objective was to find out whether these patients have access to OT services and the types of interventions being offered to them, together with their satisfaction and real benefits as users. We developed an online questionnaire which was distributed to patients with ATTRv in Spain through patient associations. Seventy-four patients with a diagnosis of ATTRv residing in Spain participated in the study. Thirteen had already used OT services at least once, felt that OT interventions improved their quality of life, would recommend OT services to others, and would return to see an occupational therapist. However, 61 had never used this type of service before. Of these, 35 knew what OT is and 13 declared that they considered that OT interventions in ATTRv could be positive for them. The results suggest that the use of OT services by ATTRv patients is low, mainly because of the lack of information about the occupational profile of individuals with this disease. The low response rate obtained for the survey limits generalization, and thus further research to confirm these preliminary findings is needed.
本研究旨在调查西班牙遗传性转甲状腺素蛋白淀粉样变性(ATTRv)患者对职业治疗(OT)服务的全球利用情况。主要目的是了解这些患者是否能够获得 OT 服务以及为他们提供的干预类型,以及他们作为使用者的满意度和实际获益。我们开发了一个在线问卷,通过患者协会分发给西班牙的 ATTRv 患者。共有 74 名居住在西班牙的 ATTRv 患者参与了这项研究。其中 13 名患者至少曾使用过一次 OT 服务,他们认为 OT 干预措施提高了他们的生活质量,会向他人推荐 OT 服务,并会再次寻求职业治疗师的帮助。然而,还有 61 名患者从未使用过此类服务。其中 35 名知道 OT 是什么,而 13 名患者表示他们认为 OT 干预措施对他们可能是有益的。研究结果表明,ATTRv 患者对 OT 服务的利用率较低,主要是因为缺乏对患有这种疾病的个体的职业概况的了解。调查的低回复率限制了结果的推广性,因此需要进一步的研究来证实这些初步发现。