Dataset Information

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

ABSTRACT:

Introduction

Multiple sclerosis (MS) is generally diagnosed at an early age, making the acceptance of this chronic disease challenging. Research dedicated to young adults with MS (YawMS) is still limited. A biopsychosocial co-created intervention for YawMS integrating social, physical and psychological activities was developed (ESPRIMO intervention) in order to improve the quality of life (QoL) and well-being. This pre-post intervention assessment study examines the feasibility of the ESPRIMO intervention and its signal of efficacy.

Methods

Inclusion criteria were: age 18-45 years, MS diagnosis, Expanded Disability Status Scale score < 3.5. After giving informed consent, YawMS completed a battery of questionnaires, which was repeated after the intervention. The battery included a bespoke feasibility scale, the COOP/WONCA charts, and the Short Form-12 Health Survey (SF-12).

Results

Fifty-three YAwMS were enrolled and 43 (81.1%) completed the intervention. The majority of the sample positively rated the pleasantness, usefulness and feasibility of the intervention. A significant change in the COOP/WONCA "general QoL" chart (t = 3.65; p < 0.01) and SF-12 mental wellbeing component (t = -3.17; p < 0.01) was found.

Discussion

ESPRIMO is an innovative intervention that is feasible; preliminary results show an improvement in QoL and mental wellbeing. Further studies are needed to test its efficacy and evaluate future implementation in health services.Clinical trial registration: ClinicalTrials.gov, NCT04431323.

SUBMITTER: Poli S

PROVIDER: S-EPMC11002131 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature

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Publications

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

Poli Silvia S Donisi Valeria V Mazzi Maria Angela MA Gobbin Francesca F Giusto Giorgia G Orlandi Riccardo R Schena Federico F Del Piccolo Lidia L das Nair Roshan R Gajofatto Alberto A Rimondini Michela M

Frontiers in psychology 20240326

<h4>Introduction</h4>Multiple sclerosis (MS) is generally diagnosed at an early age, making the acceptance of this chronic disease challenging. Research dedicated to young adults with MS (YawMS) is still limited. A biopsychosocial co-created intervention for YawMS integrating social, physical and psychological activities was developed (ESPRIMO intervention) in order to improve the quality of life (QoL) and well-being. This pre-post intervention assessment study examines the feasibility of the ES ...[more]

PMID: 38596329

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Project description:BackgroundMultiple 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.AimsIn 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.MethodsTo 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.

Project description:BackgroundFatigue is a disabling symptom of multiple sclerosis (MS) and reduces quality of life. The aim of this study was to investigate the effects of a multimodal intervention, including a modified Paleolithic diet, nutritional supplements, stretching, strengthening exercises with electrical stimulation of trunk and lower limb muscles, and stress management on perceived fatigue and quality of life of persons with progressive MS.MethodsTwenty subjects with progressive MS and average Expanded Disability Status Scale (EDSS) score of 6.2 (range: 3.5-8.0) participated in the 12-month phase of the study. Assessments were completed at baseline and at 3 months, 6 months, 9 months, and 12 months. Safety analyses were based on monthly side effects questionnaires and blood analyses at 1 month, 3 months, 6 months, 9 months, and 12 months.ResultsSubjects showed good adherence (assessed from subjects' daily logs) with this intervention and did not report any serious side effects. Fatigue Severity Scale (FSS) and Performance Scales-fatigue subscale scores decreased in 12 months (P<0.0005). Average FSS scores of eleven subjects showed clinically significant reduction (more than two points, high response) at 3 months, and this improvement was sustained until 12 months. Remaining subjects (n=9, low responders) either showed inconsistent or less than one point decrease in average FSS scores in the 12 months. Energy and general health scores of RAND 36-item Health Survey (Short Form-36) increased during the study (P<0.05). Decrease in FSS scores during the 12 months was associated with shorter disease duration (r=0.511, P=0.011), and lower baseline Patient Determined Disease Steps score (r s=0.563, P=0.005) and EDSS scores (r s=0.501, P=0.012). Compared to low responders, high responders had lower level of physical disability (P< 0.05) and lower intake of gluten, dairy products, and eggs (P=0.036) at baseline. High responders undertook longer duration of massage and stretches per muscle (P<0.05) in 12 months.ConclusionA multimodal intervention may reduce fatigue and improve quality of life of subjects with progressive MS. Larger randomized controlled trials with blinded raters are needed to prove efficacy of this intervention on MS-related fatigue.

Project description:BackgroundReducing involuntary psychiatric admissions is a global concern. In Norway, the rate of involuntary admissions was 199 per 100,000 people 16 years and older in 2020. Individuals' paths towards involuntary psychiatric admissions usually unfold when they live in the community and referrals to such admissions are often initiated by primary health care professionals. Interventions at the primary health care level can therefore have the potential to prevent such admissions. Interventions developed specifically for this care level are, however, lacking. To enhance the quality and development of services in a way that meets stakeholders' needs and facilitates implementation to practice, involving both persons with lived experience and service providers in developing such interventions is requested.AimTo develop a comprehensive intervention for primary mental health care aiming to prevent involuntary admissions of adults.MethodsThis study had an action research approach with a participatory research design. Dialogue conferences with multiple stakeholders in five Norwegian municipalities, inductive thematic analysis of data material from the conferences, and a series of feedback meetings were conducted.ResultsThe co-creation process resulted in the development of the ReCoN (Reducing Coercion in Norway) intervention. This is a comprehensive intervention that includes six strategy areas: [1] Management, [2] Involving Persons with Lived Experience and Family Carers, [3] Competence Development, [4] Collaboration across Primary and Specialist Care Levels, [5] Collaboration within the Primary Care Level, and [6] Tailoring Individual Services. Each strategy area has two to four action areas with specified measures that constitute the practical actions or tasks that are believed to collectively impact the need for involuntary admissions.ConclusionsThe ReCoN intervention has the potential for application to both national and international mental health services. The co-creation process with the full range of stakeholders ensures face validity, acceptability, and relevance. The effectiveness of the ReCoN intervention is currently being tested in a cluster randomised controlled trial. Given positive effects, the ReCoN intervention may impact individuals with a severe mental illness at risk of involuntary admissions, as more people may experience empowerment and autonomy instead of coercion in their recovery process.

Project description:Objective: Recent evidence has demonstrated that the COVID-19 pandemic is taking a toll on the mental health of the general population. The psychological consequences might be even more severe for patients with special healthcare needs and psychological vulnerabilities due to chronic diseases, such as multiple sclerosis (MS). Thus, we aimed to explore the psychological impact of this pandemic and of the subsequent healthcare service changes on young adults with MS living in Italy and to examine their coping strategies and preferences regarding psychological support in the aftermath of the pandemic. Methods: Data were collected using a cross-sectional, web-based survey advertised on social networks. We report both quantitative (descriptive statistics, t-tests, and one-way ANOVA) and qualitative data (inductive content analysis). Results: Two hundred and forty-seven respondents (mean age 32 ± 7 years), mainly with relapsing-remitting MS, from all Italian regions participated. Participants felt more worried, confused, sad, and vulnerable because of the disease "during" the pandemic in comparison to their self-evaluation of the period "before" the COVID-19 outbreak. Similarly, their perception of control over MS decreased "during" the pandemic in comparison to the retrospective evaluation of the period "before" the COVID-19 outbreak (p < 0.01). Canceled/postponed visits/exams were listed as the most frequent MS management changes, with modified/postponed pharmacological treatment representing the most stressful change. Psychological support in dealing with pandemic-related fears and improving MS acceptance and well-being was considered extremely important by almost 40% of the respondents. Different coping strategies were mentioned in the qualitative section of the survey, with social support, hobbies, and keeping busy being the most frequent ones. Conclusions: Considering the enormous impact of the pandemic on young adults with MS, we urge MS clinical centers to implement psychological support programs that address the potentially long-lasting psychological negative impact, thus fostering the therapeutic alliance that is being threatened by the infection prevention measures imposed during the pandemic, and promoting psychological resources for adaptively managing future waves of COVID-19.

Project description:BackgroundIncreasing numbers of young people living with HIV (YPLWH) have unaddressed mental health challenges. Such challenges are associated with poor antiretroviral therapy (ART) adherence and high mortality. Few evidence-based mental health interventions exist to improve HIV outcomes among YPLWH.MethodsThis pilot group treatment trial individually randomized YPLWH from two clinical sites in Tanzania, evaluated acceptability, feasibility, and preliminary effectiveness of a mental health intervention, Sauti ya Vijana (SYV; The Voice of Youth), was compared to the local standard-of-care (SOC) for improving ART adherence and virologic suppression. Enrolled YPLWH were 12-24 years of age and responded to mental health and stigma questionnaires, self-reported adherence, objective adherence measures (ART concentration in hair), and HIV RNA at baseline and 6-months (post-intervention). Feasibility and acceptability were evaluated, and potential effectiveness was assessed by comparing outcomes between arms using mixed effects modeling.ResultsBetween June 2016 and July 2017, 128 YPLWH enrolled; 105 were randomized and 93 (55 in SYV) followed-up at 6-months and were thereby included in this analysis. Mean age was 18.1 years; 51% were female; and 84% were HIV-infected perinatally. Attendance to intervention sessions was 86%; 6-month follow-up was 88%, and fidelity to the protocol approached 100%. Exploratory analyses of effectiveness demonstrated self-reported adherence improved by 7.3 percentage points (95% CI: 2.2, 12.3); and the pooled standard deviation for all ART concentration values increased by 0.17 units (95% CI: - 0.52, 0.85) in the SYV arm compared to SOC. Virologic suppression rates (HIV RNA < 400 copies/mL) at baseline were 65% in both arms but increased to 75% in the SYV arm while staying the same in the SOC arm (RR 1.13; 95% CI: 0.94, 1.36).ConclusionsYPLWH often have poor HIV outcomes, making interventions to improve outcomes in this population critical. This pilot trial of the Tanzania-based SYV intervention demonstrated trends towards improvement in ART adherence and virologic outcomes among YPLWH, supporting efforts to scale the intervention into a fully-powered effectiveness trial.Trial registrationClinicalTrials.gov Identifier: NCT02888288 . Registered August 9, 2016. Retrospectively registered as first participant enrolled June 16, 2016.

Dataset Information

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

Introduction

Methods

Results

Discussion

Publications

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

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