Adelaide Institute for Sleep Health,Flinders University,Daw Park,South Australia,Australia.
Thomas Motor Neurone Research Project,Adelaide Institute for Sleep Health,Flinders University,Daw Park,South Australia,Australia.
Palliat Support Care. 2018 Apr;16(2):228-237. doi: 10.1017/S1478951517000700. Epub 2017 Aug 22.
ABSTRACTObjective:Disease management in motor neurone disease (MND) is focused on preserving quality of life. However, the emphasis has so far been on physical symptoms and functioning and not psychosocial wellbeing. MND affects the wellbeing of carers, of family and social network members, and of healthcare providers, as well as of the patients. We therefore aimed to assess and synthesize the knowledge about maximizing MND-related psychosocial wellbeing across all these groups.
We used a systematic search and selection process to assess the scope of the literature along with a narrative synthesis of recent high-quality reviews.
The original studies were mainly observational studies of patients and, to a lesser extent, of carers. There were few interventional studies, mainly of patients. There were very few studies of any type on wellbeing in their wider social network or in healthcare professionals. All the review literature looked at MND patient or carer wellbeing, with some covering both. No reviews were found of wellbeing in other family members, patients' social networks, or their healthcare professionals. The reviews demonstrated wellbeing problems for patients linked to psychosocial issues. Carer wellbeing is also compromised. Psychotherapies, social supports, improved decision supports, and changes to healthcare delivery are among the suggested strategies for improved patient and carer wellbeing, but no proven interventions were identified for either. Early access to palliative care, also not well-tested but recommended, is poorly implemented.
Work on interventions to deal with well-established wellbeing problems for patients and carers is now a research priority. Explicit use of current methods for patient and public involvement and for design and testing of interventions provide a toolkit for this research. Observational research is needed in other groups. There is a potential in considering needs across patients' social networks rather than looking individually at particular groups.
运动神经元病（MND）的疾病管理重点在于维持生活质量。然而，迄今为止，重点一直放在身体症状和功能上，而不是心理社会健康。MND 影响患者、患者家属和社会网络成员、医护人员的健康，我们旨在评估和综合所有这些群体中与 MND 相关的心理社会健康知识。
我们使用系统搜索和选择过程来评估文献范围，并对最近高质量综述进行叙述性综合。
原始研究主要是患者的观察性研究，其次是患者家属的观察性研究。干预性研究较少，主要是针对患者。关于更广泛的社会网络或医疗保健专业人员的幸福感，几乎没有任何类型的研究。所有综述文献都关注 MND 患者或患者家属的幸福感，有些则涵盖两者。未发现任何关于其他家庭成员、患者社交网络或其医疗保健专业人员幸福感的综述。综述表明，与心理社会问题相关的患者幸福感存在问题。照顾者的幸福感也受到影响。心理治疗、社会支持、改善决策支持以及改变医疗服务提供方式是改善患者和照顾者幸福感的策略之一，但未确定任何已证实的干预措施。早期获得姑息治疗的机会虽然没有得到很好的测试，但也被推荐，但实施情况较差。
现在，解决患者和照顾者已确立的幸福感问题的干预措施工作是研究的重点。当前用于患者和公众参与以及干预措施设计和测试的方法的明确应用为这项研究提供了工具包。其他群体需要进行观察性研究。考虑患者社交网络的需求而不是单独考虑特定群体具有潜在的可能性。
