Donisi Valeria, Gajofatto Alberto, Mazzi Maria Angela, Gobbin Francesca, Busch Isolde Martina, Ghellere Annamaria, Klonova Alina, Rudi Doriana, Vitali Francesca, Schena Federico, Del Piccolo Lidia, Rimondini Michela
Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.
Section of Neurology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.
Front Psychol. 2021 Feb 23;12:598726. doi: 10.3389/fpsyg.2021.598726. eCollection 2021.
Multiple sclerosis (MS), the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Since MS is generally diagnosed at a young age-a period of great significance for personal, relational, and professional development-adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity (PA) and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs.
In collaboration with MS patients, this study aims to develop a bio-psycho-social intervention (ESPRIMO) for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects.
To tailor the intervention to the specific needs of YawMS, "patient engagement principles" will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre-post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features (e.g., resilience, well-being, mindfulness traits, self-efficacy, perceived social support, psychological symptoms, illness perception, committed action, fatigue, attitudes, subjective norms, perceived behavioral control, motivation, perception of autonomy support for PA, barriers and intentions to PA) will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention.
多发性硬化症（MS）是导致年轻人残疾的最常见神经系统疾病，不仅影响身体功能，还与认知障碍、疲劳、抑郁和焦虑相关，会显著影响健康相关生活质量（HRQoL）。由于MS通常在年轻时被诊断出来——这对个人、人际关系和职业发展来说是一个非常重要的时期——适应可能会变得极具挑战性。因此，提高年轻人适应性应对这些潜在挑战的能力对于挖掘他们的潜力和才能至关重要。研究表明，针对MS患者的心理干预可以增强心理韧性和HRQoL，规律的体育活动（PA）和社交参与可以改善心理健康。然而，缺乏基于该疾病生物-心理-社会模型开展全面干预措施的相关文献。针对患有MS的年轻成年人（YawMS）的干预措施以及患者参与此类项目开发的关注度更低。
本研究与MS患者合作，旨在为YawMS开发一种生物-心理-社会干预措施（ESPRIMO），以改善他们的HRQoL，并探索其可行性、可接受性和效果。
为使干预措施符合YawMS的特定需求，在共同创建阶段将采用“患者参与原则”，对患者和医疗专业人员进行网络调查并开展焦点小组讨论。在干预阶段，将招募60名患有MS的年轻成年人作为试点样本。共同创建的干预措施包括为期12周的小组课程，将涵盖心理社会策略并纳入体育活动。采用纵向前后评估设计，将使用自我报告问卷来测量HRQoL和其他生物-心理-社会特征（如心理韧性、幸福感、正念特质、自我效能感、感知到的社会支持、心理症状、疾病认知、承诺行动、疲劳、态度、主观规范、感知行为控制、动机、对PA自主性支持的感知、PA的障碍及意图），测量PA的数量和质量，并使用作者编制的问卷来评估ESPRIMO干预措施的可行性和可接受性。
