45 research outputs found

    Consequences of multiple sclerosis for patients in Sweden

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    This study aimed to consider consequences of multiple sclerosis for patients in Sweden throughout various stages of the life course. The thesis was separated into four constituent papers, which dealt with different aspects of the disease, its symptoms, and implications at different life stages. The first study considers life expectancy, one of the most crucial aspects concerning the implications of the consequences of a chronic disease. The paper found MS patients had a hazard ratio (HR) for mortality of 2.92 (95% confidence interval (CI) 2.86-2.99)) at any given age relative to a group of non-MS comparators when the entire study period from 1968 to 2012 was analysed. When trends were considered, however, it was shown that the improvement to survival for MS patients had been considerable, and dropped from an HR of 6.52 (95% CI 5.79–7.34) when considering the earliest time period (1968 to1980), down to an HR of 2.08 (95% CI 1.95–2.22) for the most recent time period (2001 to 2012). Cause specific mortality also improved over time for MS patients, with mortality beginning to more closely reflect mortality trends for the general population. The largest excess mortality for MS patients came from respiratory and infectious diseases. Cardiovascular disease was the leading cause of death for both the MS and non-MS cohorts. Alongside issues pertaining to life expectancy, how patients are affected by their symptoms is an important consideration when answering questions about consequences of MS. Pain has been noted as a particularly distressing symptom by MS patients, and previous studies have indicated it is likely MS patients experience pain to a greater degree than the general population. As far as we are aware, however, there have been very few studies making direct comparisons of pain between MS patients and non-MS comparators with regard to pain, perhaps due to difficulties in drawing direct comparisons. In order to attempt objectivity and a fair comparison across MS and non-MS subjects, the second and third studies utilized the prescribed drugs register (PDR) of Sweden in order to ascertain when prescriptions for pain relief had been collected. An excess of pain relief prescriptions would imply an excess of pain among MS patients. Information on pain type can also be extracted using this method through the anatomical therapeutic code (ATC) entered into the PDR. Study two was able to provide evidence supporting the hypothesized increased risk of pain among MS patients, and demonstrated MS patients had an HR of 2.52 (95% CI 2.38-2.66) for overall pain prescription. It was additionally shown that this increased risk of pain was primarily driven by increased likelihood of neuropathic pain. The HR for MS patients being prescribed these treatments relative to their non-MS comparators was 5.73 (95% CI 5.07-6.47). MS patients were also at marginally increased risk of anti-migraine preparation prescriptions, however no increased risk of prescriptions for the treatment of musculoskeletal pain was detected. Study three followed on from study two, which considered pain relief prescription, and included the same definition of the outcome. However, the study aimed primarily to consider the effect of genotype on MS and pain phenotype. Past murine studies have indicated that the major histocompatibility complex (MHC) is associated with pain-like behavior when considering peripheral nerve injury, however the same association was not observed when considering injury to the central nervous system (CNS), which more closely mimics the nervous system injuries seen in MS patients due to demyelination. Past research has identified that the DQB1*0302 class II HLA genes are associated with neuropathic pain presentation in individuals undergoing surgery for inguinal hernia, or for spinal disc herniation. As far as we are aware, the role of this allele in pain presentation, and whether it is differential by MS status has not been previously studied. A modest increased risk of pain for non-MS carriers of the DQB1*0302 allele was found, with an odds ratio (OR) of 1.18 (95% CI 1.03-1.35), however no increased risk was identified for MS patients (OR 1.02, (95% CI 0.85-1.24)), mimicking the results found in murine studies. Given that the average age at diagnosis is childbearing age for women, and that the majority of patients are women, issues surrounding MS and pregnancy were important to consider when answering questions of consequences of MS. Paper four assessed whether exposure to interferon –beta during pregnancy influenced intrauterine growth, by considering its effect on birth weight, height, and head circumference. This was an international study comprised of data from both Sweden and Finland. The study, which used prescribed medication to identify pre-natal exposure, and additionally the MS register within Sweden, concluded that exposure to interferon-beta did not seem to be associated with intrauterine growth in either Sweden or Finland

    Sexual Problems and Distress among Men and Women with Same-Sex and Opposite-Sex Sexual Partners: An Analysis of a Nationally Representative Sample of Adults in Great Britain

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    Objective: This study aimed to examine differences in reporting sexual problems and distress among men and women with same-sex and opposite-sex sexual partners. Methods: Multinomial regression was undertaken on risk of reporting sexual problems and/or distress using data from the third National Survey of Sexual Attitudes and Lifestyles. Results: Differences were detected between men of different sexual behavior groups when considering the problems “lack of enjoyment in sex,” “felt anxious during sex,” “felt no excitement or arousal during sex,” “lack of interest in sex,” “did not reach/took a long time to reach climax,” and “getting or keeping an erection.” Fewer differences were detected among women. Conclusions: Women reporting same sex sexual partners, and to a greater extent men reporting same sex sexual partners , have different sexual health needs and report sexual health problems and distress to a different extent than is the case for individuals who only have opposite-sex sexual partner

    An evaluation of whether propensity score adjustment can remove the self-selection bias inherent to web panel surveys addressing sensitive health behaviours.

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    BACKGROUND: In health research, population estimates are generally obtained from probability-based surveys. In market research surveys are frequently conducted from volunteer web panels. Propensity score adjustment (PSA) is often used at analysis to try to remove bias in the web survey, but empirical evidence of its effectiveness is mixed. We assess the ability of PSA to remove bias in the context of sensitive sexual health research and the potential of web panel surveys to replace or supplement probability surveys. METHODS: Four web panel surveys asked a subset of questions from the third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3). Five propensity scores were generated for each web survey. The scores were developed from progressively larger sets of variables, beginning with demographic variables only and ending with demographic, sexual identity, lifestyle, attitudinal and sexual behaviour variables together. The surveys were weighted to match Natsal-3 based on propensity score quintiles. The performance of each survey and weighting was assessed by calculating the average 'absolute' odds ratio (inverse of the odds ratio if less than 1) across 22 pre-specified sexual behaviour outcomes of interest comparing the weighted web survey with Natsal-3. The average standard error across odds ratios was examined to assess the impact of weighting upon variance. RESULTS: Propensity weighting reduced bias relative to Natsal-3 as more variables were added for males, but had little effect for females, and variance increased for some surveys. Surveys with more biased estimates before propensity weighting showed greater reduction in bias from adjustment. Inconsistencies in performance were evident across surveys and outcomes. For most surveys and outcomes any reduction in bias was only partial and for some outcomes the bias increased. CONCLUSIONS: Even after propensity weighting using a rich range of information, including some sexual behaviour variables, some bias remained and variance increased for some web surveys. Whilst our findings support the use of PSA for web panel surveys, the reduction in bias is likely to be partial and unpredictable, consistent with the findings from market research. Our results do not support the use of volunteer web panels to generate unbiased population health estimates

    Prevalence of adverse pregnancy outcomes after exposure to interferon beta prior to or during pregnancy in women with MS : Stratification by maternal and newborn characteristics in a register-based cohort study in Finland and Sweden

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    Background: Previous studies reported no increase in the prevalence of adverse pregnancy outcomes after exposure to interferon-beta (IFN-beta). However, no study has investigated if the prevalence of these outcomes after IFN-beta exposure is modified by maternal and newborn characteristics. Our objective was to describe the stratified prevalence of adverse pregnancy outcomes among women with multiple sclerosis (MS) exposed only to IFN-beta or unexposed to any MS disease modifying drugs (MSDMDs). Methods: This population-based cohort study using Finnish (1996-2014) and Swedish (2005-2014) register data included pregnancies of women with MS exposed only to IFN-beta 6 months before or during pregnancy (n=718) or unexposed to MSDMDs (n=1397). The outcome prevalences were described stratified by maternal and newborn characteristics, with 95% confidence intervals (CIs). Confounder-adjusted analyses were performed if the prevalence results indicated modified effect of IFN-beta in specific strata. Results: The stratified analysis indicated that the prevalence of serious (anomaly or stillbirth) and other adverse pregnancy outcomes was similar among the exposed and unexposed, with no statistically significant difference. Among women treated for MS >5 years, serious adverse pregnancy outcomes occurred in 4.3% (95%CI: 1.98.3%) of pregnancies exposed only to IFN-beta 6 months before or during pregnancy and in 2.7% (95%CI: 1.25.0%) of unexposed pregnancies. The confounder adjusted analyses did not support the hypothesis that MSPeer reviewe

    Using the Web to Collect Data on Sensitive Behaviours: A Study Looking at Mode Effects on the British National Survey of Sexual Attitudes and Lifestyles.

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    BACKGROUND: Interviewer-administered surveys are an important method of collecting population-level epidemiological data, but suffer from declining response rates and increasing costs. Web surveys offer more rapid data collection and lower costs. There are concerns, however, about data quality from web surveys. Previous research has largely focused on selection biases, and few have explored measurement differences. This paper aims to assess the extent to which mode affects the responses given by the same respondents at two points in time, providing information on potential measurement error if web surveys are used in the future. METHODS: 527 participants from the third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3), which uses computer assisted personal interview (CAPI) and self-interview (CASI) modes, subsequently responded to identically-worded questions in a web survey. McNemar tests assessed whether within-person differences in responses were at random or indicated a mode effect, i.e. higher reporting of more sensitive responses in one mode. An analysis of pooled responses by generalized estimating equations addressed the impact of gender and question type on change. RESULTS: Only 10% of responses changed between surveys. However mode effects were found for about a third of variables, with higher reporting of sensitive responses more commonly found on the web compared with Natsal-3. CONCLUSIONS: The web appears a promising mode for surveys of sensitive behaviours, most likely as part of a mixed-mode design. Our findings suggest that mode effects may vary by question type and content, and by the particular mix of modes used. Mixed-mode surveys need careful development to understand mode effects and how to account for them

    Pregnancy outcomes after exposure to interferon beta : a register-based cohort study among women with MS in Finland and Sweden

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    Background Our aim was to estimate and compare the prevalence of adverse pregnancy outcomes among pregnant women with multiple sclerosis (MS) exposed to interferon beta (IFNB) and among women with MS unexposed to any MS disease-modifying drug (MSDMD). Methods This cohort study used Finnish (1996-2014) and Swedish (2005-2014) national register data. Women with MS having IFNB dispensed 6 months before or during pregnancy as the only medication were considered as IFNB exposed (only IFNB-exposed), whereas women with MS unexposed to any MSDMD were considered unexposed (MSDMD-unexposed). Prevalence was described and compared using log-binomial or logistic regression and adjusted for potential confounders including maternal age and comorbidity. Results Among 2831 pregnancies, 2.2% of the only IFNB-exposed and 4.0% of the MSDMD-unexposed women had serious adverse pregnancy outcomes [elective termination of pregnancy due to foetal anomaly (TOPFA), major congenital anomaly (MCA) in live, or stillbirth]. After adjustments, the prevalence of serious adverse pregnancy outcomes was lower among the only IFNB-exposed compared with the MSDMD-unexposed [relative risk 0.55, 95% confidence interval (CI) 0.31-0.96]. The prevalence of individual outcomes, including MCA, spontaneous abortions, and stillbirths was not increased with IFNB exposure. Women with MS exposed to IFNB appeared more likely to terminate their pregnancy for reasons other than foetal anomaly, compared with MSDMD-unexposed pregnant MS patients (odds ratio 1.71, 95% CI 1.06-2.78). Conclusion In this large cohort study, no increase in the prevalence of adverse pregnancy outcomes was observed in women with MS exposed to IFNB compared with MS patients unexposed to any MSDMDs. This study together with other evidence led to a change in the labels of the IFNB products in September 2019 in the European Union, and IFNB use today may be considered during pregnancy, if clinically needed.Peer reviewe

    Sources of Sex Information Used by Young British Women Who Have Sex with Women (WSW) and Women Who Have Sex Exclusively with Men (WSEM): Evidence from the National Survey of Sexual Attitudes and Lifestyles

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    There is little consideration about the provision of information about sex to women who have sex with women (WSW). This study drew on data from the third National Survey of Sexual Attitudes and Lifestyle, a nationally representative survey of people in Great Britain. Logistic regression was undertaken to examine firstly the relationships between WSW and women who have sex exclusively with men (WSEM) and their main source of information about sex, and secondly between WSW/WSEM and unmet need for information about sex. Each source was included as the binary outcome indicating yes this was the main source, or no this was not the main source of information about sex. The results found that WSW had significantly lower odds of reporting lessons at schools as their main source of information, and significantly higher odds of reporting sources defined as ‘other’ (predominantly first girlfriend/boyfriend or sexual partner) as their main source of information. Reported levels of unmet need for information was also higher amongst young WSW compared with WSEM. This study provides new insights into the sex educational needs of young women and highlights the need for sex education in schools in Great Britain to include information on a full-range of sexual practices, including same-sex sexual relationships
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