Wiblin Louise, Durcan Rory, Lee Mark, Brittain Katie
Clinical Ageing Research Unit, Newcastle University, Newcastle upon Tyne NE4 5PL, UK.
St Benedict's Hospice for Specialist Palliative Care, St. Benedict's Way, Sunderland SR2 0NY, UK.
Parkinsons Dis. 2017;2017:5283259. doi: 10.1155/2017/5283259. Epub 2017 Sep 28.
Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP) are atypical Parkinsonian disorders with extended morbidity and reduced lifespan, known to have marked and early impact upon quality of life (QoL). This study aimed to address the lack of studies in the literature regarding personal perspectives on QoL in MSA and PSP in both patients and carers. Participants took part in qualitative, in-depth interviews in the North East of England, exploring what impacts their QoL and their experiences of living with these complex conditions. Connection to others was found to be a prevailing theme, encompassing difficulty communicating, social isolation, impact on personal relationships, and stigma. This work is helpful in that it emphasises the personal experiences of these patients and carers, which can provide insights into important areas for clinical service planning and best clinical management of individual patients as well as considerations for future research into QoL in these rare disorders.
多系统萎缩（MSA）和进行性核上性麻痹（PSP）是具有较长病程和较短寿命的非典型帕金森氏症，已知对生活质量（QoL）有显著且早期的影响。本研究旨在解决文献中缺乏关于MSA和PSP患者及照料者对生活质量的个人观点的研究。参与者在英格兰东北部参加了定性的深入访谈，探讨了影响他们生活质量的因素以及他们在这些复杂病症下的生活经历。与他人的联系被发现是一个普遍存在的主题，包括沟通困难、社会孤立、对个人关系的影响以及耻辱感。这项工作很有帮助，因为它强调了这些患者和照料者的个人经历，可为临床服务规划的重要领域、个体患者的最佳临床管理以及这些罕见病症生活质量的未来研究考量提供见解。
