Celani Maria Grazia, Cantisani Teresa Anna, Bignamini Angelo, Macone Sara, Papetti Rossella, Baiocco Luisa
Department of Neurophysiopathology, Azienda Ospedaliera di Perugia, Ospedale S. Maria della Misericordia, S. Andrea delle Fratte, 06156 Perugia, Italy; Cochrane Neurosciences Field, Direzione Salute Welfare, Region of Umbria, Perugia, Italy.
Cochrane Neurosciences Field, Direzione Salute Welfare, Region of Umbria, Perugia, Italy; Perugia Hospital, Neurophysiopathology Unit, Azienda Ospedaliera di Perugia, Ospedale S. Maria della Misericordia, S. Andrea delle Fratte, 06156 Perugia, Italy.
Epilepsy Behav. 2018 Jan;78:273-279. doi: 10.1016/j.yebeh.2017.08.028. Epub 2017 Nov 8.
The objective of this study was to collect perspectives, ideas, and values of people affected by epilepsy and their carer to include them in new research in this area.
This is a semiquantitative study analyzing needs, emotions, and medical issues emerging from focus groups with patients and carers divided in three severity levels of disease.
The participants were 25 patients and 36 carers attending outpatients' service of tertiary epilepsy center in Umbria, Italy.
Assistance was the need expressed by more than 40% of the participants followed by experience-sharing, knowledge, control, clarity, and security. The only significant effect in logistic regression analysis after adjusting for severity was the patients' expressed need for "experience-sharing" more than their carers (OR 7.29, 95%CI: 1.76-30.18). Hope was the emotion expressed by more than 50% of the participants, followed by anger, fear, and resignation. After adjusting for severity, carers were more likely to express anger, in comparison with patients (OR 17.23, 95%CI: 3.55-83.74; P<0.001). The patients were 6.88 times more likely (95%CI 1.84-25.75; P=0.004) to express "resignation" than their carers. The most frequent medical issues were related to: "medications", "frequency of crises", "work impact", "quality of life", "psychomedical integration of care", and "development of new drugs". After adjusting for severity in a logistic regression analysis, patients were more likely to express concerns for the frequency of crises than carers (OR 3.57, 95%CI: 1.16-11.04; P=0.027).
Patients' and carers' priorities, based on intense personal insight, represent a starting point to work for shared outcome measures in clinical trials and shared agenda in research, including research of strong evidence in complex intervention as service models for people with epilepsy.
本研究的目的是收集癫痫患者及其照料者的观点、想法和价值观，以便将其纳入该领域的新研究中。
这是一项半定量研究，分析了来自按疾病严重程度分为三个级别的患者和照料者焦点小组中出现的需求、情绪和医疗问题。
参与者为25名患者和36名照料者，他们在意大利翁布里亚的三级癫痫中心门诊就诊。
超过40%的参与者表示需要援助，其次是经验分享、知识、控制、清晰度和安全感。在对严重程度进行调整后的逻辑回归分析中，唯一显著的影响是患者比其照料者更倾向于表达“经验分享”的需求（比值比7.29，95%置信区间：1.76 - 30.18）。超过50%的参与者表达的情绪是希望，其次是愤怒、恐惧和顺从。在对严重程度进行调整后，与患者相比，照料者更有可能表达愤怒（比值比17.23，95%置信区间：3.55 - 83.74；P<0.001）。患者表达“顺从”的可能性是其照料者的6.88倍（95%置信区间1.84 - 25.75；P = 0.004）。最常见的医疗问题与“药物治疗”、“发作频率”、“工作影响”、“生活质量”、“精神医学护理整合”以及“新药研发”有关。在逻辑回归分析中对严重程度进行调整后，患者比照料者更有可能表达对发作频率的担忧（比值比3.57，95%置信区间：1.16 - 11.04；P = 0.027）。
基于深刻个人见解的患者和照料者的优先事项，是开展临床试验中共享结果测量以及研究中共享议程（包括作为癫痫患者服务模式的复杂干预中有力证据的研究）工作的起点。
