Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis

Abstract

BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial.AimsThis paper aims to present (i) an example of a co-creation process in the context of chronic diseases (ii) preferences and perspectives of young adults with multiple sclerosis (YawMS; aged 18–45) and healthcare professionals (HCPs) on the relevance, objectives, and modalities of a biopsychosocial intervention (named ESPRIMO) and on strategies/barriers to participation.MethodsA participatory mixed-method approach in three consecutive steps was implemented: online surveys with YawMS (n = 121) and HCPs (n = 43), online focus groups (FGs) with YawMS, consultation with an advisory board (AB) composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction (recognized as already limited during the COVID-19 pandemic). Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability.

Traditional versus progressive robot-assisted gait training in people with multiple sclerosis and severe gait disability: study protocol for the PROGR-EX randomised controlled trial

“… 61 Qualitatively exploring the unique perspectives of PwMS and severe gait disability and collecting their suggestions regarding possible barriers and strategies for participation might inform future intervention implementation. 62 Since RAGT is safe and well tolerated by patients with MS, 63 we expect patients to provide positive feedback on the robotic intervention.…”

Fostering quality of life in young adults living with multiple sclerosis: a pilot study of a co-created integrated intervention

“…The design of the ESPRIMO intervention was informed by literature, by YawMS and healthcare professionals ( Donisi et al, 2022 ). This co-creation process may have contributed to the feasibility and acceptability of the intervention.…”

“…The protocol and the ESPRIMO intervention ( Donisi et al, 2021b , 2022 ) had to be adapted to address the challenges of COVID-19 and the related preventative measures enforced by the government; participants’ retention could have been influenced by these change and the pandemic itself. It has been shown that COVID-19 had an impact on clinical research with negative effects on clinical trial initiation, patient enrollment of ongoing trials, protocol adherence, clinical trials’ operations, and data collection ( Lasch et al, 2022 ).…”

“…The ESPRIMO intervention was designed using a co-creation approach ( Morote et al, 2020 ; Donisi et al, 2022 ) that actively involved the main stakeholders in the management of MS. Researchers and healthcare professionals with different backgrounds (i.e., neurologists, psychologists, nurses, and sport scientists) and young adults with MS were consulted through all three steps of the co-creation (i.e., surveys, focus groups, consultation with the Advisory Board) aimed at collecting the preferences and opinions of people with MS and healthcare professionals to outline the objectives, methodology, and practical implementation of the intervention, integrating the results with the evidence available in the literature.…”

“…Psychological group session were guided by cognitive behavioral therapy, mindfulness, positive psychology, and acceptance and commitment therapy as main theoretical approaches ( Donisi et al, 2021b ). Based on the co-creation process, the main aims were to help people accept the disease, provide stress management strategies, support emotional expression and regulation, and increase self-efficacy in managing the disease ( Donisi et al, 2022 ).…”