The corona pandemic and participatory governance: Responding to the vulnerabilities of secondary school students in Europe.

Adolescents in secondary schools have limited susceptibility to the SARS-COV-2 virus, but paradoxically are considered to be carrying the highest psychosocial burden during this pandemic. The aim of our European multi-country qualitative research was to investigate the COVID-19 crisis response in secondary schools and the role of national, regional, and local stakeholders in contributing to a participatory governance approach. We carried out 11 months of qualitative fieldwork, which included 90 respondents from the Netherlands, Ireland, and Finland for in-depth interviews and/or group discussions. Participant observation was conducted in four secondary schools to explore the interplay of day-to-day formal and informal practices of crisis governance. Our findings contribute to a better understanding of what efforts were made to facilitate participatory governance and where a bottom-up approach would have served useful in successfully implementing the COVID-19 mitigation strategies. Moreover, we show how these mitigation strategies have led to unintended consequences, such as students' difficulties with isolation and associated mental health problems, and the struggles of socialization when returning to a physical school environment. Our findings highlight the importance of the school environment in the socio-emotional developments of adolescents. We introduce the TAPIC-R model to analyze good governance, advancing the existing TAPIC model with an emphasis on the role of resilience in shaping participatory governance. We argue this is urgently needed during crises to strengthen engagement of the community, including vulnerable groups and achieve positive outcomes within and across policy structures and action domains.

Beta-interferon exposure and onset of secondary progressive multiple sclerosis.

BACKGROUND AND PURPOSE: Beta-interferons (IFNß) are the most widely prescribed drugs for patients with multiple sclerosis (MS). However, whether or not treatment with IFNß can delay secondary progressive MS (SPMS) onset remains unknown. Our aim was to examine the association between IFNß exposure and SPMS onset in patients with relapsing-remitting MS (RRMS). METHODS: A retrospective cohort study using British Columbia (Canada) population-based clinical and health administrative data (1985-2008) was conducted. RRMS patients treated with IFNß (n = 794) were compared with untreated contemporary (n = 933) and historical (n = 837) controls. Cohort entry was the first clinic visit during which patients became eligible for IFNß treatment (baseline). The outcome was time from baseline to SPMS onset. Cox regression models with IFNß as a time-dependent exposure were adjusted for sex, and baseline age, disease duration, disability, *socioeconomic status and *comorbidities (*available for the contemporary cohorts only). Additional analyses included propensity score adjustment. RESULTS: The median follow-up for the IFNß-treated, untreated contemporary and historical controls were 5.7, 3.7 and 7.3 years, and the proportions of patients reaching SPMS were 9.2%, 11.8% and 32.9%, respectively. After adjustment for confounders, IFNß exposure was not associated with the risk of reaching SPMS when either the contemporary or the historical untreated cohorts were considered (hazard ratio 1.07; 95% confidence interval 0.93-1.48, and hazard ratio 1.04; 95% confidence interval 0.74-1.46, respectively). Further adjustments and the propensity score yielded results consistent with the main analysis. CONCLUSIONS: Amongst patients with RRMS, use of IFNß was not associated with a delayed onset of SPMS.

Birth outcomes of pregnancies fathered by men with multiple sclerosis.

We linked several population-based clinical and health administrative databases in British Columbia, Canada. We identified and compared birth outcomes of pregnancies fathered by men with multiple sclerosis (MS) (n=202) and men from a frequency-matched general population cohort (n=981) between 1996 and 2010. Using multivariate models, we analyzed the association of paternal MS, disease duration at conception and disability (as measured by the Expanded Disability Status Scale) with birth weight and gestational age. Paternal MS and MS-related clinical factors were not significantly associated with birth outcomes (p>0.05). This study provides assurance to expecting fathers with MS and their families.

Investigation of heterogeneity in the association between interferon beta and disability progression in multiple sclerosis: an observational study.

BACKGROUND AND PURPOSE: It was recently reported that there was no significant overall association between interferon beta exposure and disability progression in relapsing-remitting multiple sclerosis (RRMS) patients in an observational study from Canada. In the current study, the potential for heterogeneity in the association between exposure to interferon beta and disability progression across patients' baseline characteristics was investigated. METHODS: RRMS patients treated with interferon beta (n = 868) and two cohorts of untreated patients (829 contemporary and 959 historical controls) were included. The main outcome was time from interferon beta treatment eligibility (baseline) to a confirmed and sustained Expanded Disability Status Scale (EDSS) score 6 using a multivariable Cox model, with treatment as a time-varying predictor, testing interaction effects for five pre-specified baseline characteristics: sex, age, disease duration, EDSS and annualized relapse rate (ARR) based on the previous 2 years. RESULTS: Significant heterogeneity was found in the association of interferon beta exposure and disability progression only across ARR, and only when treated patients were compared with historical controls (P = 0.005 at a Bonferroni-adjusted alpha of 0.01). For patients with ARR>1, treatment-exposed time was associated with a hazard ratio of 0.38 (95%CI 0.20-0.75) for disability progression compared with the unexposed time. CONCLUSIONS: RRMS patients with more frequent relapses at baseline may be more likely to benefit from interferon beta treatment with respect to long-term disability progression.

Relative mortality and survival in multiple sclerosis: findings from British Columbia, Canada.

OBJECTIVE: To examine mortality and factors associated with survival in a population based multiple sclerosis (MS) cohort. METHODS: Clinical and demographic data of MS patients registered with the British Columbia MS clinics (1980-2004) were linked to provincial death data, and patients were followed until death, emigration or study end (31 December 2007). Absolute survival and the influence of patient characteristics (sex, disease course (primary progressive (PPMS) vs relapsing onset (R-MS)) and onset age) were estimated by Kaplan-Meier analyses (from birth and disease onset). Mortality relative to the general population was examined using standardised mortality ratios. Excess mortality associated with patient characteristics and time period of cohort entry was assessed by relative survival modelling. RESULTS: Of 6917 patients, 1025 died. Median survival age was 78.6 years (95% CI 77.5 to 79.7) for women and 74.3 years (95% CI 73.1 to 75.4) for men. Survival from onset was longer for R-MS (49.7 years; 95% CI 47.9 to 51.5) than for PPMS (32.5 years; 95% CI 29.5 to 35.7); however, survival age was similar. The overall standardised mortality ratios was 2.89 (95% CI 2.71 to 3.07), and patients survived approximately 6 years less than expected, relative to the general population. PPMS had a higher relative mortality risk compared with R-MS (relative mortality ratio (RMR) 1.52; 95% CI 1.30 to 1.80). Women with PPMS had a relative survival disadvantage compared with men with PPMS (RMR 1.55; 95% CI 1.19 to 2.01). Relative survival within 10 years of cohort entry was similar between time periods. CONCLUSIONS: Some of the longest MS survival times are reported here but the risk of death was still greater than in the age, sex and calendar year matched general population. No evidence of increased survival over time was found when improved survival in the general population was taken into consideration.

A prospective cost-effectiveness analysis of vertical banded gastroplasty for the treatment of morbid obesity.

BACKGROUND: Surgical treatment of morbid obesity is gaining in popularity, because conservative treatment is ineffective. However, a cost-effectiveness analysis has never been performed and is the main goal of the present study. METHODS: 21 consecutive morbidly obese patients were tested before and after vertical banded gastroplasty (VBG). Quality of life was assessed with the Nottingham Health Profile and a visual analogue scale. A prevalence-based cost-of-illness analysis of morbid obesity was performed and the cost-effectiveness of VBG assessed. RESULTS: VBG resulted in a significant weight loss and an improved quality of life. The improved quality of life combined with 3.6 life-years gained after VBG resulted in 12 quality adjusted life-years (QALY) gained in a lifelong scenario. Lifelong costs of illness of morbidly obese persons ranged from $8,304 to $9,367. Total direct costs of VBG were $5,865. The percentage of patients performing paid labor increased from 19% before VBG to 48% after VBG, resulting in an average productivity gain of $2,765 per year. In summary, the cost-effectiveness analysis revealed that surgical treatment of morbid obesity by means of VBG saves $4,004 to $3,928 per QALY (overall dominance). CONCLUSION: Because treatment of morbid obesity with VBG results in QALYs gained and less costs, there is no doubt that this procedure should be introduced or continued from a societal point of view.