Brunori Paola, Celani Maria Grazia, Bignamini Angelo Alberto, Carlini Marzia, Papetti Rossella, Ercolani Maria Vittoria, Baiocco Luisa, Armato Gaetano, Cantisani Teresa Anna
Neurophysiopathology, Perugia Hospital, Perugia, Italy
Neurophysiopathology, Perugia Hospital, Perugia, Italy.
BMJ Support Palliat Care. 2021 Apr 8. doi: 10.1136/bmjspcare-2020-002741.
The aim of this study is to collect the perspectives and values of people affected by amyotrophic lateral sclerosis (ALS) and their carers to offer clinicians, researchers and policymakers aspects which are precious in prioritising future research questions and reshaping care service organisations in a participatory approach.
Cohort study using ALS Umbria, the electronic database in Italy.
Eleven patients and 33 carers who agreed to participate in the study were divided into six focus groups by 'status' (patient or carer) and by four severity levels of 'burden of disease'.
A semiquantitative analysis was undertaken. Each recorded group discussion was transcribed into text file and independently read by two psychologists and two ALS specialists to blindly identify needs, emotions and medical issues, which are the key semantic meanings expressed. Any disagreement in interpretation was resolved through consultation among authors.
Carers pronounced significantly more words related to patient's disease burden they cared. 40% of subjects expressed the need for 'assistance', regardless of the disease burden. 'Anger' alone represented more than 1/4 of all expressed emotions and was more common in patients than in carers (73% vs 36%, p=0.077). The most frequent medical issue expressed by 1/3 of participants was 'difficulty in communication'.
This study has given voice to the expectations of those affected by the burden of ALS. 'Welfare assistance', 'anger management' and resolution of 'difficulties in communication' represent issues that need to be analysed in a common prioritised research agenda with sensible and shared outcome measures to implement patient-centred medicine.
本研究旨在收集肌萎缩侧索硬化症（ALS）患者及其照料者的观点和价值观，为临床医生、研究人员和政策制定者提供宝贵的信息，以便以参与式方法确定未来研究问题的优先级并重塑护理服务组织。
使用意大利的电子数据库ALS翁布里亚进行队列研究。
11名患者和33名同意参与研究的照料者按“身份”（患者或照料者）以及“疾病负担”的四个严重程度级别分为六个焦点小组。
进行了半定量分析。每次记录的小组讨论都转录成文本文件，由两名心理学家和两名ALS专家独立阅读，以盲目识别需求、情绪和医疗问题，这些是所表达的关键语义。解释上的任何分歧都通过作者之间的协商解决。
照料者提及的与他们所照料患者的疾病负担相关的词汇明显更多。40%的受试者表示需要“帮助”，无论疾病负担如何。仅“愤怒”就占所有表达情绪的四分之一以上，在患者中比在照料者中更常见（73%对36%，p = 0.077）。三分之一的参与者提及的最常见医疗问题是“沟通困难”。
本研究表达了受ALS负担影响者的期望。“福利援助”、“愤怒管理”和“沟通困难”的解决代表了需要在一个共同的优先研究议程中进行分析的问题，要有合理且共享的结果指标，以实施以患者为中心的医疗。
