scholarly journals Outcomes of a Peer Support Program in Multiple Sclerosis in an Australian Community Cohort: A Prospective Study

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Louisa Ng ◽  
Bhasker Amatya ◽  
Fary Khan

Background/Objectives. This pilot study evaluated the impact of a peer support program on improving multiple sclerosis (MS) related psychological functions (depression, anxiety, and stress) and enhancing quality of life. Methodology. Participants (n=33) were recruited prospectively and received an 8-week group face-to-face peer support program. Assessments were at baseline (T1), 6 weeks after program (T2), and 12 months after program (T3), using validated questionnaires: Depression Anxiety Stress Scale (DASS), McGill Quality of Life (MQOL), and Brief COPE. Results. Participants’ mean age was 52; the majority were female (64%) and married (64%). Median time since MS diagnosis was 16 years. At T2, participants reported improved psychological functioning (DASS “depression,” “anxiety,” and “stress” subscales, z values −2.36, −2.22, and −2.54, moderate effect sizes (r) 0.29, 0.28, and 0.32, resp.) and quality of life (MQOL SIS z score −2.07, r=0.26) and were less likely to use “self-blame” as a coping mechanism (Brief COPE z score −2.37, r=0.29). At T3, the positive improvements in stress (DASS stress subscale z score −2.41, r=0.31) and quality of life were maintained (MQOL SIS, z score −2.30, r=0.29). There were no adverse effects reported.

2008 ◽  
Vol 14 (8) ◽  
pp. 1131-1136 ◽  
Author(s):  
DK Tepavcevic ◽  
J Kostic ◽  
ID Basuroski ◽  
N Stojsavljevic ◽  
T Pekmezovic ◽  
...  

Objective Sexual dysfunction (SD) is a common but often overlooked symptom in multiple sclerosis (MS). The aim of this study was to estimate the frequency, type, and intensity of SD in our patients with MS and to investigate its influence on all the domains of quality of life. Methods The study population comprised a cohort of 109 patients with MS (McDonald's criteria, 2001). SD was quantified by a Szasz sexual functioning scale. Health-related quality of life was measured by a disease-specific instrument MSQoL-54 (Serbian version). Results The presence of at least one symptom of SD was found in about 84% of the men and in 85% of the women. The main complaints in women were reduced libido, difficulties in achieving orgasm, and decreased vaginal lubrication; in men, the main complaints were reduced libido, incomplete erections, and premature ejaculation. In women, statistically significant negative correlations between the presence and level of SD and quality of life domains were reached for all subscales ( P < 0.01), except for the Pain subscale ( P = 0.112). In men, negative correlations were also observed for all domains, but they were statistically significant for physical health, physical role limitations, social function, health distress, sexual function, and sexual function satisfaction ( P < 0.01). We found that the presence of all the analyzed types of sexual problems statistically significantly lowered scores on the sexual function and the sexual function satisfaction subscales in both men and women ( P < 0.01). The most prominent impact on both domains was observed for the total loss of erection in men and for anorgasmia in women. Conclusions Our results reveal that frequent occurrence of SD in MS patients prominently affects all aspects of their quality of life.


2017 ◽  
Vol 24 (11) ◽  
pp. 1461-1468 ◽  
Author(s):  
Dayo Afolabi ◽  
Christo Albor ◽  
Lukasz Zalewski ◽  
Dan R Altmann ◽  
David Baker ◽  
...  

Background: A number of elements of the pivotal ‘cladribine tablets treating multiple sclerosis orally’ (CLARITY) trial have remained unpublished. Objective: To report the impact of cladribine on health-related quality of life (QoL) in people with relapsing multiple sclerosis (pwRMS). Methods: QoL data from the phase III trial of two different doses (3.5 and 5.25 mg/kg) of oral cladribine in pwRMS were acquired from the European Medicines Agency through Freedom of Information. Spearman’s rank correlation was used to analyse the relationship between baseline QoL scores and baseline Expanded Disability Status Scale (EDSS) scores. Responses of the Euro Quality of Life 5 Dimensions (EQ-5D) and Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaires were compared between treatment and control groups using univariate analyses of covariance. Results: In total, n = 5148 EQ-5D responses and n = 894 MSQOL-54 physical, mental health and dimension scores were extracted. Baseline EQ-5D indices correlated with EDSS scores. After 2 years, pwRMS taking 3.5 ( p = .001) and 5.25 mg/kg ( p = .022) reported significantly improved EQ-5D index scores compared with placebo. Positive, yet non-significant, differences were detected in MSQOL-54 scores between cladribine and placebo. Conclusion: Analysis of the CLARITY dataset suggests that, over and above its established clinical efficacy, cladribine leads to improved QoL over 96 weeks. ClinicalTrials.gov identifier: NCT00213135.


2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.


2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S150-S150
Author(s):  
Amelia Austen ◽  
Carina Hou ◽  
Khushbu Patel ◽  
Keri Brady ◽  
Gabrielle G Grant ◽  
...  

Abstract Introduction Burn injuries can have major long-term effects on the health and quality of life for children and adolescents. This study narratively reviewed the health outcomes literature focusing on the impact of burn injury for children aged 5–18. Methods Literature targeting pediatric outcomes was reviewed to identify the effects of burns on children aged 5–18 (n=16). Inclusion criteria included studies that focused on the impact of burns on health and quality of life and were age-appropriate for this population. Articles were identified via PubMed, Web of Science, and manual reference checks. Data collected included the outcomes and health domains assessed in each article and the findings of the effects of the burn injury on those specific outcomes. The Preschool LIBRE Conceptual Model served as a ‘domains framework’ to guide the identification of outcomes and health domains. Results Long-term burn-specific outcomes and broad health domains identified were physical functioning (n=9), psychological functioning (n=12), social functioning (n=4), symptoms (n=8), and family (n=7). Some studies exclusively focused on one domain whereas others assessed two domains or more. Subdomains such as upper extremity functioning and functional independence were addressed in the physical functioning domain. Psychological functioning outcomes included subdomains such as emotional health and behavioral problems. Social functioning outcomes evaluated subdomains such as problems with peers and social participation. The symptoms domain addressed post-burn pain and itch. Family outcomes subdomains such as parental satisfaction with appearance and general family functioning were identified. Conclusions Burn-specific outcomes and health domains assessing the effects of burns on children aged 5–18 were identified among 16 studies. There is a need for a comprehensive assessment tool that more precisely measures the impact of burn injury across these domains. This work will inform the development of the School-Aged Life Impact Burn Recovery Evaluation (LIBRE) Computer Adaptive Test (CAT) Profile – a new outcome metric for children and adolescents with burns. Applicability of Research to Practice This review is relevant to researchers and clinicians assessing health outcomes and measuring burn recovery in children aged 5–18.


2020 ◽  
Vol 64 (2) ◽  
pp. 113-126 ◽  
Author(s):  
Dimity A Crisp ◽  
Debra Rickwood ◽  
Bridgette Martin ◽  
Nicola Byrom

Peer support programs offer a promising approach to addressing the high levels of stress and psychological distress reported by university students. However, few studies have considered the impact of implemented programs on the wellbeing and skill development of student facilitators. This study examines the experiences of student facilitators of a guided peer support program for reducing and preventing stress and low mood in student participants. Benefits to student facilitators, anticipated and actual, include the development of skills and experience in group facilitation, and a greater sense of community and belonging. While challenges exist in establishing initiatives, peer support and mentoring programs can offer valuable benefits by increasing wellbeing and fostering skill development for both participants and student facilitators. It is important that university-based peer support programs consider the student facilitator experience in both program development and evaluation and ensure training addresses facilitator concerns, prepares students adequately for the role, and considers the benefits for individual professional development.


2017 ◽  
Vol 46 (2) ◽  
pp. 148-167 ◽  
Author(s):  
Neil Carrigan ◽  
Leon Dysch ◽  
Paul M. Salkovskis

Background: Multiple sclerosis (MS) is commonly associated with psychological complications. Previous research by Hayter and colleagues (2016) found that in patients with MS, health anxiety (HA) can account for part of the variance in quality of life (QoL) independent of physical and cognitive impairment caused by the disease. MS patients with HA perceived their intact physical and cognitive performance as impaired relative to those without HA and attributed the impairment to MS. These misperceptions might be useful targets in the treatment of HA in MS using cognitive behaviour therapy (CBT). Aims: Study 1 sought to replicate the main findings from Hayter et al. (2016). Study 2 examined the impact of HA-focused CBT in a case series. Method: In Study 1, twenty participants with MS were screened for HA and assigned to either a high or low HA group. They completed assessments of cognitive and physical functioning before rating their performance on these tasks, followed by measures of QoL, mood and physical disability. Four participants in the high HA group subsequently received six sessions of CBT using a consecutive AB case series in Study 2. Results: Study 1 replicated the main findings from the earlier study. In Study 2, three of the four patients who received treatment showed substantial improvements in HA and mood and all showed improvement in QoL. Conclusion: Given the high rates of HA in MS patients and its impact on QoL, this case series suggests that a brief CBT intervention could significantly improve patients’ wellbeing.


2003 ◽  
Vol 12 (4) ◽  
pp. 133-137 ◽  
Author(s):  
Robyn Lewis Claar ◽  
James A. Blumenthal

Emotional stress has been associated with the development and progression of several chronic medical conditions. Recently, researchers have assessed the impact of stress-management interventions on patients' psychological functioning, quality of life, and various disease outcomes, including survival. This review summarizes the value of stress-management techniques in the treatment of two important, life-threatening conditions: coronary heart disease and cancer. Results from randomized clinical trials indicate that psychological interventions can improve patients' psychological functioning and quality of life. However, there is limited evidence to suggest that these interventions significantly reduce morbidity and mortality.


2001 ◽  
Vol 7 (5) ◽  
pp. 340-344 ◽  
Author(s):  
M.P. Amato ◽  
G. Ponziani ◽  
F. Rossi ◽  
C.L. Liedl ◽  
C. Stefanile ◽  
...  

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6039-6039
Author(s):  
Fulvia Pedani ◽  
Mario Airoldi ◽  
Massimiliano Garzaro ◽  
Riccardo Torta ◽  
Luca Raimondo ◽  
...  

6039 Background: The treatment of oropharyngeal squamous cell carcinomas (OSCC) may heavily affect patient’s quality of life (QoL). Aim of our study was the evaluation of the impact of different treatments on physical and psychological functioning and on QoL of patients affected by stage III-IV disease. Methods: The enrolled sample was composed by 94 OSCC patients divided into 3 subgroups based on treatment modalities: surgery + adjuvant radiotherapy (S + RT: 30 patients), exclusive concomitant chemo-radiotherapy (CT + RT: 30 patients) and exclusive chemotherapy (CT) in 34 patients not suitable for surgery and/or radiotherapy. Psycho-oncological assessment included: Hospital Anxiety Depression Scale (HADS), Montgomery-Asberg Depression Scale (MADRS), Mini-Mental Adjustment to Cancer scale (MINI-MAC), EORTC QLQ C-30 questionnaire with the specific module Head and Neck 35 (H&N35). Results: The 60 patients primarily treated with S + RT or CT + RT presented superimposeable clinical and tumour characteristics while those treated with exclusive CT were affected by stage IV disease and in the 90% of cases underwent to previous treatment exclusive or combined treatment such as surgery, radiotherapy and chemotherapy. In the following table, data about physical and psychological functioning and on QoL of the 3 subgroups of patients are summarized. Conclusions: In stage III-IV OSCC treatments have a strong influence on QoL and coping styles. Patients treated with CT + RT were characterized by a lower percentage of self-reported anxiety and depression and higher EORTC Global QoL score. More than one third of patients treated with S + RT had overt symptoms of anxiety and depression. Stage IV patients treated with palliative CT had elevated level of anxiety, depression and low quality of life. Auto-evaluation is less effective in depression assessment. The role of concomitant psychological supportive care should be evaluated in these patients treated with different approaches. [Table: see text]


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