Understanding the challenges of living with Parkinson's in a post COVID health and social context: a mixed methods proposal

帕金森氏症是英国第二常见的神经退行性疾病，约有14.5万人受到影响。虽然发病年龄在60岁出头是常见的，但个体可以在这种情况下生活很多年(1)。身体挑战（僵硬，震颤等）最常与这种情况有关，但心理困难，情绪低落，焦虑等也有报道(2)。每个人都有不同的卫生保健需求，最好是与他们的咨询师和其他卫生专业人员的参与进行定期审查(3)。当前的COVID-19大流行与前所未有的社会和经济变化相关(4)，心理影响已经显现。关于对帕金森氏症患者的特殊影响，申请人的最新合作强调了各种初步影响（https://www.parkinsons.org.uk/news/how-havecoronavirus-covid-19-restrictions-impacted-people-affected-parkinsons）。在这项研究中，1491名帕金森病患者和540名家庭成员于2020年5月完成了一项对英国帕金森病患者的调查。研究的主要发现是：超过三分之一的帕金森氏症患者出现了行动迟缓、僵硬和疲劳的症状，超过四分之一的患者出现了颤抖和焦虑的症状。压力和孤立以及获得医疗保健和锻炼的机会减少被视为导致这种身体状况恶化的原因。-对于那些经常与卫生服务联系的人来说，许多人的预约被取消，而替代方案通常不会提供。

Parkinson's disease is the second most common neurodegenerative condition in the UK,affecting around 145,000 individuals. While age of onset in the early 60s is common,individuals can live with the condition for many years (1). Physical challenges (rigidity,tremor etc.) are most often associated with the condition but psychological difficulties, lowmood, anxiety etc (2) are also reported. Individuals have varying health care needs, requiring,optimally, regular reviews with their consultant and involvement from other healthprofessionals (3).The current COVID-19 pandemic has been associated with social and economic changes on anunprecedented level (4), with psychological effects already demonstrated. In relation to thespecific effects on individuals with Parkinson's, the applicants' latest collaboration hashighlighted various initial impacts (https://www.parkinsons.org.uk/news/how-havecoronavirus-covid-19-restrictions-impacted-people-affected-parkinsons). In this, a survey ofParkinson's UK members in May 2020 was completed by 1491 people with the condition and540 family members. The key findings were:- over a third of individuals with Parkinson's experienced increased slowness of movement,stiffness and fatigue and over a quarter increased tremor and anxiety. Stress and isolationand reduced access to health care and exercise were seen as causes of this physicaldeterioration.- For those in regular contact with health services, many had appointments cancelled withalternatives not routinely offered.