Predictors of Mood Disorders in Parents With Multiple Sclerosis: The Role of Disability Level, Coping Techniques, and Perceived Social Support.

BACKGROUND: Being a parent can be demanding and stressful, especially for people with chronic diseases such as multiple sclerosis (MS). Parenting can be disrupted by flareups, disease worsening, and other MS symptoms, including mobility problems, pain, fatigue, and cognitive impairment. Mood disorders, such as depression and anxiety, have been found to occur at much higher rates in people with MS than in the general population. Surprisingly, less is known about which factors may predict mood disorders in parents with MS. This study aims to identify potential demographic, clinical, and self-reported predictors that contribute to mood disorders measured by the Hospital Anxiety and Depression Scale. METHODS: A total of 285 parents with MS completed an anonymous online questionnaire combining sociodemographic, clinical, and family characteristics and scales, validated in Italian, related to coping strategies and social support. Associations between each variable and mood disorders were assessed using univariate and multivariate logistic regression analyses. RESULTS: Disability level, emotional and dysfunctional coping strategies, and perceived social support were significant predictors of mood disorders in parents with MS. CONCLUSIONS: These findings confirm the importance of identifying risk factors for mood disorders in parents with MS so that early intervention can minimize mood disruptions caused by the disease.

Unmet needs influence health-related quality of life in people with multiple sclerosis.

BACKGROUND: People with MS are a heterogeneous population with varying difficulties and needs that are influenced by the individual experience of the disease, symptoms and disease course. The aim of the present study was to identify factors that influence health-related quality of life in a sample of subjects with MS, specifically health and social care-related needs and demographic and disease characteristics. METHODS: Individuals with a definite diagnosis of MS were identified through MS out-patient clinics and local branches of the Italian MS Society. The EQ-5D-3L utility index was used to describe health profiles and as an overall measure of perceived HRQoL. The number of unmet health and social care-related needs was used to describe the impact of unmet needs on HRQoL. Multiple regression analyses were performed using a hierarchical approach. RESULTS: Data was analyzed from 1013 subjects. Overall, 83% of subjects reported at least one health or social care-related need as being unmet and subjects with a higher number of unmet needs had lower HRQoL (p < 0.001). The number of unmet needs was entered at the first step with a statistically significant effect (Cox-Snell R2 0.15, BIC 870.9, AIC 851.2). Clinical variables, included in the second step, contributed significantly to explaining the variability between models (Cox-Snell R2 0.43, BIC 481.0, AIC 446.6), and the addition of socio-demographic factors further accounted for variability (Cox-Snell R2, 0.46, BIC 461.0, AIC 402.0). CONCLUSIONS: The study demonstrated that a higher number of both health and social care-related unmet needs predicted lower HRQoL. The health profile of the sample identified all domains of the EQ-5D-3L as being important in determining HRQoL. Data confirms that unmet needs alone are significantly related to reduced HRQoL, although the multifactorial and complex nature of MS makes it a challenge to identify the combination of aspects that fully predict variability in quality of life.

User testing as a method for evaluating subjects' understanding of informed consent in clinical trials in multiple sclerosis.

The Patient Information Sheet (PIS) is an important aspect of the consent process in a clinical trial that provides potential participants the necessary information for deciding whether to take part in a specific study and for understanding their rights pertaining to participation. User Testing was originally developed to assess how written information about medicinal products performs with its intended users. User testing has been proposed in a small number of clinical trials and has been able to identify subjects' ability or inability to find and understand important information related to providing a valid consent to participate. A 21-item ad hoc user testing questionnaire was applied to 2 PIS used in clinical trials in MS. Sixty subjects were allocated to a group testing an observational study PIS (O-PIS) or to a group testing an intervention study PIS (I-PIS). In the O-PIS group, 19.4% of subjects located all relevant information within the text (21/21) and 3.4% of subjects in the I-PIS group. Overall, 82.1% of subjects testing the O-PIS understood the text and 53.5% of subjects testing the I-PIS understood the text. In the category 'nature and purpose of the trial', one-third of subjects did not understand the text, including the aim of the study. User testing should be considered as a valid tool in evaluating the comprehensibility of PIS in the context of clinical trials MS to assure that subjects provide a valid consent to participate.

Short Report: Evaluation of Acceptance and Commitment Therapy Training for Psychologists Working with People with Multiple Sclerosis.

BACKGROUND: Acceptance and commitment therapy (ACT) is the most widely used and researched recent variant of cognitive behavioral therapy and has been shown to increase quality of life in people with chronic illnesses, including multiple sclerosis (MS). However, few MS health practitioners are trained in ACT. This study evaluated a 2-day ACT training workshop for Italian psychologists working with people with MS. METHODS: Data were collected via online questionnaires from 34 psychologists before the workshop, after the workshop, and at 6-month follow-up. Two sets of variables were measured at each assessment: primary outcomes (well-being, negative affect, positive affect, and job satisfaction) and ACT processes (values, mindfulness, psychological flexibility, and cognitive defusion). A separate online workshop evaluation questionnaire and an ACT knowledge examination were administered after the workshop. RESULTS: Most participants (94%) acknowledged the potential beneficial effects of the workshop on their work. Almost all participants reported their intention to apply ACT clinically. More than 90% of participants indicated that the workshop was efficacious. All participants scored higher than 75% on the examination. Mindfulness increased from after the workshop to follow-up; however, there were no statistically significant changes in other variables. Correlations suggested beneficial associations between the ACT processes and the primary outcomes. CONCLUSIONS: Results suggest that ACT training is personally and professionally helpful for psychologists in the MS field.

The impact of multiple sclerosis on family members: a review of the literature.

Multiple sclerosis (MS) is one of the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS. MS typically manifests between 20 and 40 years of age, and can lead to significant disability in some cases. The disease course is unpredictable. MS has a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress in each family member as well as on family functioning in general. Common themes include the impact of the emotional state of the person with MS on family members, the role of the healthy parent on how children cope, the effect of a lack of information about MS, communication within the family and with healthcare professionals, and the importance of assessing and treating families as a dynamic unit in order to assure comprehensive intervention plans. The current literature review is based on 30 full research articles meeting inclusion criteria related to partners/couples, family caregivers, children with a parent with MS and parents of young children with MS.

Management of pain in multiple sclerosis: a pharmacological approach.

About half of patients with multiple sclerosis (MS) report pain; treatment for pain alone accounts for nearly 30% of the total use of medications for the management of all MS-related symptoms. Patients with MS can experience more than one type of pain simultaneously and at any point during the disease course, even in newly or recently diagnosed cases. Pain in MS can be associated with other symptoms, including spasticity, fatigue and mood disorder. Pain sufferers experience disruption in daily life activities, work, mood, recreation and general enjoyment of life, and report low satisfaction with pain management. Many clinical features of pain are often unrecognized by clinicians and are difficult for patients to describe. The majority of clinical evidence regarding treatment stems from small pilot and open-label studies; therefore, treatment of pain associated with MS is often based on anecdotal reports and clinicians' experience. The open-label design of the majority of studies, the unavailability of large samples and the difficulty of performing placebo-controlled studies because of ethical considerations result in insufficient evidence to support or refute the effectiveness of pain medications. This Review presents available data regarding pharmacological approaches for addressing pain in MS and highlights the shortcomings in pain management research.

Manual wheelchair propulsion pattern use by people with multiple sclerosis.

PURPOSE: To determine the most commonly used manual wheelchair propulsion pattern by people with multiple sclerosis (MS) and to assess which factors influence the preference. METHOD: Sixty manual wheelchair users with MS from an MS outpatient rehabilitation centre in Northern Italy were assessed on upper limb range of motion and trunk stability to determine if these factors or demographic, disease or wheelchair use history, influenced the choice of wheelchair propulsion pattern. RESULTS: Fifty-four (90%) subjects used the arcing propulsion pattern, the least efficient pattern as reported in the literature. Sixteen (26.7%) subjects had impaired trunk stability and 38 (63.3%) subjects demonstrated some deficit on either extremity for active range flexion-extension. Twenty (33%) subjects had no deficits on active range flexion-extension and had normal trunk control. Upper limb range of motion and trunk stability were not significant in determining the preference for propulsion pattern (p = 1.05 and 0.38, respectively). Demographic and disease factors and wheelchair use history were also not significant in determining propulsion pattern. CONCLUSIONS: The person with MS uses the least efficient pattern overall, requiring frequent repetition, although a smaller range of movement. This may be an energy conservation technique that helps in managing fatigue.