Haque Sameen, Crawley Karen, Schofield Deborah, Shrestha Rupendra, Davis Ryan, Sue Carolyn M
Neurology, Nepean Hospital, Kingswood, New South Wales, Australia.
Neurogenetics, Kolling Institute of Medical Research, St Leonards, New South Wales, Australia.
BMJ Neurol Open. 2024 Aug 30;6(2):e000770. doi: 10.1136/bmjno-2024-000770. eCollection 2024.
Mitochondrial diseases often follow a chronic, multimorbid disease course in adults. Like other chronic conditions, mitochondrial diseases present a challenge to public and community health models and patients are potentially at higher risk of social isolation and loneliness. However, there is lack of data on social provisions in mitochondrial diseases.
We performed a cross-sectional observational study on patients with a confirmed genetic or clinical diagnosis of mitochondrial disease, recruited between September 2018 and December 2021. Participants completed the Social Provisions Scale (SPS) as a measure of social support. Designated carers similarly completed the SPS in carer-specific questionnaires.
95 mitochondrial disease patients and 24 designated carers completed the SPS. Social provisions were met for all six subscales of SPS in the mitochondrial disease cohort: (1) guidance 90.5% (n=86), (2) reassurance of self-worth 82.8% (n=77), (3) social integration 88.4% (n=84), (4) attachment 83.2% (n=79), (5) opportunity of nurturance, 61.1% (n=58) and (6) reliable alliance 95.8% (n=91). All social provisions were also met in the carer cohort.
Patients with mitochondrial diseases and their carers demonstrate a high perceived level of social support in the setting of a tertiary referral centre specialised in mitochondrial disease despite the burden of chronic disease.
线粒体疾病在成年人中通常呈慢性、多病共存的病程。与其他慢性病一样，线粒体疾病给公共和社区健康模式带来了挑战，患者面临社会隔离和孤独的风险可能更高。然而，目前缺乏关于线粒体疾病社会支持情况的数据。
我们对2018年9月至2021年12月期间招募的确诊为线粒体疾病的基因或临床诊断患者进行了一项横断面观察性研究。参与者完成了社会支持量表（SPS）以衡量社会支持。指定的照顾者同样在照顾者特定问卷中完成了SPS。
95名线粒体疾病患者和24名指定照顾者完成了SPS。线粒体疾病队列中SPS的所有六个子量表的社会支持均得到满足：（1）指导90.5%（n = 86），（2）自我价值的安心82.8%（n = 77），（3）社会融合88.4%（n = 84），（4）依恋83.2%（n = 79），（5）养育机会61.1%（n = 58），（6）可靠联盟95.8%（n = 91）。照顾者队列中的所有社会支持也得到了满足。
尽管存在慢性病负担，但在专门治疗线粒体疾病的三级转诊中心，线粒体疾病患者及其照顾者的社会支持感知水平较高。
