What factors influence feeling competent as a parent with multiple sclerosis?

2019 ◽  
pp. 174239531989531
Author(s):  
Michele Messmer Uccelli ◽  
Michela Ponzio ◽  
Silvia Traversa

Objective To identify factors that influence the perception parents with multiple sclerosis have of their competence in parenting. Method/design Subjects were parents of a child with a maximum of 18 years of age recruited through a national multiple sclerosis organization’s social media channels. Data on demographic and disease information, mood, coping, quality of life and perceived social support were collected using an anonymous online questionnaire. Univariate and multivariate analyses were performed to assess associations between these variables and subjects’ perception of parenting sense of competence. Results The sample consisted of 285 parents with multiple sclerosis, with a mean age of 41 years and a mean disease duration of 10.4 years. In the multivariate analysis, independent determinants of lower parenting sense of competence were anxiety ( p =  0.012), depression ( p =  0.001) and dysfunctional coping ( p =  0.005). Problem-focused coping ( p =  0.029) and higher physical and mental scores on the SF-12 ( p =  0.006, p <  0.001, respectively) were related to a higher parenting sense of competence. Higher parent age correlated with a lower sense of parenting competence ( p =  0.002). Conclusions The perception parents with multiple sclerosis have of their parenting competence was most strongly correlated with mood, coping strategies and health-related quality of life, factors that are potentially modifiable.

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.


2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.


2013 ◽  
Vol 20 (2) ◽  
pp. 253-257 ◽  
Author(s):  
Mariko Kita ◽  
Robert J Fox ◽  
J Theodore Phillips ◽  
Michael Hutchinson ◽  
Eva Havrdova ◽  
...  

Multiple sclerosis (MS) has a significant impact on health-related quality of life (HRQoL) with symptoms adversely affecting many aspects of everyday living. BG-12 (dimethyl fumarate) demonstrated significant efficacy in the phase III studies DEFINE and CONFIRM in patients with relapsing–remitting MS. In CONFIRM, HRQoL was worse in patients with greater disability at baseline, and who relapsed during the study, and improved with BG-12 treatment. Mean Short Form-36 Physical Component Summary scores for BG-12 increased over 2 years and scores for placebo decreased. Coupled with clinical and neuroradiological benefits, these HRQoL results further support BG-12 as an effective oral treatment for relapsing MS.


Physiotherapy ◽  
2016 ◽  
Vol 102 ◽  
pp. e226-e227
Author(s):  
S.-J. Ryan ◽  
A. Marcar ◽  
P. Stone ◽  
K. Garikipati ◽  
R. Kuisma ◽  
...  

1995 ◽  
Vol 4 (3) ◽  
pp. 187-206 ◽  
Author(s):  
B. G. Vickrey ◽  
R. D. Hays ◽  
R. Harooni ◽  
L. W. Myers ◽  
G. W. Ellison

2017 ◽  
Vol 87 (2) ◽  
pp. 141-155 ◽  
Author(s):  
Jessica Gasiorek ◽  
John P. Barile

The association between how middle-aged and older adults talk about aging and their quality of life was examined using latent profile analysis and regression techniques. Two-hundred eight-six adults with an average age of 52.82 (range: 45–77) completed an online questionnaire, which assessed participants’ self-reported communication about aging, stress, health-related quality of life, and satisfaction with life. Controlling for social support and demographics, participants’ profile of communication about aging was found to predict satisfaction with life, stress, and mental health but not general or physical health.


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