Health-related quality of life of different patient groups in Swedish national quality registers : longitudinal studies of EQ-5D data and application of different value sets

Background: EQ-5D data on patients’ health-related quality of life (HRQoL) are collected in roughly 40% of about 100 National Quality Registers (NQRs) in Sweden. The aim of the thesis was to increase knowledge on the use of the EQ-5D-3L in assessing HRQoL of patients in different NQRs and to compare different value sets used to describe HRQoL. Methods: In Study I, data on patients from 11 NQRs with spine surgery, hip arthroplasty, knee arthroplasty, ankle surgery, anterior cruciate ligament, osteoarthritis, fractures, heart failure, respiratory failure, psoriasis, and rheumatology were included. A total of 266,241 patients from the NQRs and 49,169 members of the general population were included. In Study II, 69,290 patients in the Swedish Hip Arthroplasty Register at baseline and 1-year follow-up, and 21,305 patients at 6-year follow-up were included. Data on demographic and clinical characteristics and EQ-5D-3L data were retrieved in both studies. In Study I, descriptive analyses, Paretian Classification of Health Change (PCHC) and a two-level random intercept model of the impact of diagnoses on EQ VAS scores were performed. EQ-5D-3L indices were calculated using eight value sets from Sweden, Germany, Denmark, and the UK. One-way analysis of variance was used to assess the discriminative ability of the value sets across American Society of Anaesthesiologists (ASA) classes. Results: In Study I, the pain/discomfort dimension was the dimension with the highest proportion of problems reported both in most registers and in the general population. The highest proportion of improved category of PCHC were reported by patients from the ankle, hip, knee, and spine registers. The two-level random intercept models of EQ VAS score, as predicted by diagnoses, showed patients in most registers, with the exception of fractures, had lower scores than the general population at baseline and at 1-year follow-up. In Study II, all value sets were able to discriminate HRQoL among the ASA classes, and showed the predictive ability of ASA classes on HRQoL. Conclusion: Both studies demonstrated the importance of the EQ-5D-3L instrument in providing HRQoL data to complement clinical data. The studies documented HRQoL of different patient groups and demonstrated the consistency of the EQ-5D-3L dimensions and the EQ VAS score. All the value sets used to summarize EQ-5D-3L data showed that ASA classes predicted HRQoL and demonstrated ability to differentiate across ASA classes

Activity restrictions, treatment and work disability among people with multiple sclerosis

Background: Multiple sclerosis (MS) is a disease that commonly occurs among individuals of working age. Its symptoms are heterogeneous and affect people with MS (PwMS) considerably in different aspects of their lives. Disease-modifying therapies (DMTs) have helped a lot in the improvement of health and work productivity. However, studies on the impact of MS in different facets of life as well as the long-term DMT use trends in relation to corresponding changes in work disability measures such as sickness absence and/or disability pension (SADP) as well as work ability are lacking. So, the present thesis aimed at increasing knowledge on activity restrictions, trends in disease-modifying therapy use, and associated work disability among PwMS in Sweden. Methods: In studies I and IV, data were collected in a cross-sectional survey among PwMS in Sweden in 2021. Among them, 4052 who responded to the questions on restrictions on the four domains of work, family, leisure activities, and contact with friends/acquaintances were included in the analysis. In study II, 1923 PwMS with MS onset during 2007-2010 were included in a longitudinal register-based study to assess the DMT use trajectories over 10 years and the associated trends in SADP days for over 11 years. A similar study was conducted in study III among 1395 PwMS with DMT start/decision time of 2014/2015 assessing DMT use trajectories for 5 years and the associated SADP days for 7 years (from two years before treatment start). In study IV, utilizing the same survey material as study I, a total of 4103 PwMS were included in the study of how DMT use and work ability are associated as well as the role of other factors. For the analyses, in study I, multinomial logistic regression analysis was performed to assess predictors of reporting restrictions in the work and private life domains. In study II and III, sequence analysis was used to describe the sequences of DMT use over the follow-up time and to identify clusters of DMT use. The factors associated with cluster belonging were assessed using multinomial regression analyses conducted in each study. In assessing the trends in SADP by cluster, generalized estimating equations (GEE) were used in study II while zero-inflated negative binomial regression analysis was conducted in study III. In study IV, linear regression analyses were conducted to assess the association between DMT use and work ability score (WAS) and the role of additional socio-demographic, clinical, and self-reported health variables. Results: About two-thirds of the 4052 PwMS in study I reported some form of restriction in the work (64.3%), family (61.3%), leisure activities (68.9%), and contact with friends/acquaintances (59.7%) domains. Tiredness/fatigue was the most-limiting symptom in half (49.5%) of the PwMS. Neurologically normal PwMS (expanded disability status scale (EDSS) score of zero) still reported restrictions in the four life domains ranging from 39.6% (friends/acquaintances) to 45.7% (leisure activities). Overall, older PwMS, women, those with lower levels of education, people with progressive forms of MS, with invisible limiting symptoms and higher EDSS scores had higher odds of restrictions in the work and private life domains. In study II, four clusters of DMT use trajectories were identified: long-term non-high-efficacy DMTs (38.6%), escalation to high-efficacy DMTs (31.2%), delayed start and escalation to high-efficacy DMTs (15.4%), and discontinued/ no DMT (14.2%). Younger ages, higher EDSS scores, progressive MS, and higher frequency of DMT switch were generally associated with being in clusters other than long-term-non-high-efficacy. The trends in SADP showed fewer mean SADP days among PwMS in the long-term non-high-efficacy DMT cluster than in the others about 9 years after MS onset. The GEE models on SADP trends showed comparable findings to the descriptive statistics. Similarly, in study III among 1395 PwMS also four clusters of DMT use trajectories were identified. These include long-term non-high-efficacy DMTs (34.6%), long-term high-efficacy DMTs (41%), escalation to high-efficacy DMTs (15.8%), and discontinued/no DMTs (8.5%) clusters. Progressive MS and higher EDSS scores were associated with the clusters other than the long-term non-high-efficacy one. Individuals in the long-term high-efficacy DMTs cluster had a higher likelihood of being on SADP. However, starting high-efficacy DMTs showed a larger decline in SADP days than other clusters. In study IV, among the 4103 PwMS, just over half reported good (37.0%) or excellent (16.3%) WAS. The association of DMT use and WAS showed that PwMS on non-high-efficacy DMTs had higher WAS than those on high-efficacy and those not on DMTs but explaining only 1.24% of the variation in WAS. Occupation, EDSS score, fatigue, and health-related quality of life (HRQoL) explained high proportions of the variance in WAS. Conclusions: The thesis showed that PwMS experience substantial levels of restrictions to their work and private lives, which were often associated with symptoms such as fatigue. Restrictions were also experienced among PwMS considered neurologically normal. The thesis also described long-term trajectories of DMT use and associated SADP days in two studies with different cohorts, showing the recent trend toward initiation of high-efficacy DMTs becoming more common. Trends of SADP days across clusters were stable and lower in the long-term non-high-efficacy DMTs cluster. Higher work ability was noted among PwMS on non-high-efficacy DMTs despite very low explanatory power. The important roles of occupation, disability, fatigue, and HRQoL were also observed

A household survey of medicine storage practices in Gondar town, northwestern Ethiopia

Abstract Background Household surveys are crucial to get accurate information on how medicines are acquired, and used by consumers, as they provide the best evidence in the area. The objective of this study was to document household medicine storage practices in Gondar town, northwestern Ethiopia. Methods A cross-sectional household survey was conducted from April 5 to May 6, 2015. In the study, 809 households were surveyed from four sub-cities in the town selected through multistage sampling with 771 included in the final analysis. Data on the extent of storage, storage conditions, sources of medicines and their current status among others were collected through structured interviews and observations. The data were entered in to Epidata version 3.1, exported to and analyzed using Statistical Packages for Social Sciences (SPSS) version 21. Results Of the 771 households in the study, 44.2% stored medicines. Presence of family members with chronic illness(es) and higher levels of household incomes predicted higher likelihood of medicine storage. In the households which allowed observation of stored medicines (n = 299), a mean of 1.85 [SD = 1.09] medicines per household were found. By category, anti-infectives for systemic use (23.9%), medicines for alimentary tract and metabolism (19.2%) and those for cardiovascular system (17.7%) ranked top. Among individual medicines stored, diclofenac (10.7%), paracetamol (9.9%) and amoxicillin (8.0%) were on top of the list. Dispensaries (97.8%) and physicians (83.5%) were almost exclusive sources of medicines and advices/orders for medicines respectively. Nearly two-thirds of the medicines found were on use and a vast majority (76.5%) were stored in chests of drawers. Proportion of expired medicines was very low (3.14%). Conclusions The use of physicians’ and pharmacists’ advice to get medicines; use of dispensaries as principal sources, large proportion of medicines being in use and very low proportion of expiry showed good practices. However, storage places of medicines were not purpose built. Encouraging good practices through continued medicine use education and advocating appropriate medicine storage in medicine cabinets is required to improve storage conditions and consequent use of medicines

Trajectories of disease-modifying therapies and associated sickness absence and disability pension among 1923 people with multiple sclerosis in Sweden

BACKGROUND: There is limited information on the trajectories of disease-modifying therapy (DMT) use and their association with sickness absence and/or disability pension (SADP) among people with multiple sclerosis (PwMS). The objective of the study was to identify trajectories of DMT use over 10 years among PwMS, identify sociodemographic and clinical factors associated with the trajectories, and to assess the association between identified trajectories and SADP days. METHODS: A longitudinal register-based study was conducted, on a prospective data set linked across six nationwide registers, assessing treatment courses of PwMS with DMTs for the 10 years following multiple sclerosis (MS) onset. The study included 1923 PwMS with MS onset in 2007-2010, when aged 19-56 years. In each 6-month-period, their treatment was categorized as before treatment, high-efficacy, non-high-efficacy, or no DMT. Sequence analysis was performed to identify sequences of the treatment categories and cluster them into different DMT trajectories. Cluster belonging, in relation to demographic and clinical characteristics, was assessed through log-multinomial regression analysis. The association of trajectories/cluster-belonging with SADP net days was assessed using generalized estimating equation (GEE) models. RESULTS: Cluster analyses identified 4 trajectories of DMT use: long-term non-high-efficacy DMTs (38.6%), escalation to high-efficacy DMTs (31.2%), delayed start and escalation to high-efficacy DMTs (15.4%), and discontinued/ no DMT (14.2%). Age, MS type, expanded disability status scale (EDSS) score and the number of DMT switches were associated with cluster belonging. The youngest age group (18-25) were more likely to be in the escalation to high-efficacy cluster. People with primary progressive MS were more likely to be in the delayed start or discontinued/ no DMT cluster. Higher EDSS scores were associated to being in the other three clusters than in the long-term non-high-efficacy DMTs cluster. Higher number of DMT switches were associated with being in the escalation to high-efficacy DMTs cluster but less likely to be in the delayed start or discontinued/ no DMT clusters. Descriptive analyses showed a trend of fewer mean SADP days among PwMS using non-high-efficacy DMT than the other clusters about 9 years after onset. PwMS in the escalation to high-efficacy and discontinued/no DMT clusters had more SADP days. PwMS in the delayed start and escalation to high-efficacy DMTs cluster, started with fewer SADP days which increased over time. SADP days adjusted through GEE models showed trends comparable with the descriptive analysis. CONCLUSION: This study described the long-term real-world trajectories of DMT use among PwMS in Sweden using sequence analysis and showed the association of the trajectories with SADP days as well as sociodemographic and clinical characteristics

Immunological and clinical progress of HIV/AIDS patients on antiretroviral therapy at a health center in Addis Ababa, Ethiopia

Objective: The objective of the following study was to assess the immunological and clinical progress of human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) patients on antiretroviral therapy (ART) at a health center in Addis Ababa, Ethiopia. Materials and Methods: A retrospective follow-up study was carried out using the medical records of HIV/AIDS patients who initiated ART between August 2005 and 2007. A total of 83 patients were included in the study. The records were used to get a 1 year progress since ART initiation. Results: At ART initiation the median CD4 + cell count was 127 cells/mm 3 and the median weight 50 kg. Out of the total patients 47% were ambulatory and 16% were bedridden in their functional status. The regimen initiated by most patients, 59 (71%), was "Stavudine/Lamivudine/Nevirapine (D4T/3TC/NVP)". After 12 months on ART, 63 (76%) of the patients were still actively following the treatment. After the same period, 12% of them were deceased. The functional status of 69 (83.1%) of the patients on ART improved to "working" status after 6 months. At the end of the 1 year on ART all the 63 patients, who were actively following the treatment, improved to "working" status. Weight of the patients improved to 54 and 56 kg after 6 and 12 months respectively. The increase in the CD4 + cell count was 92 and 118 cells/mm 3 after 6 and 12 months respectively. Conclusion: This study showed that immunological and clinical status of the patients had improved within the 1 year of therapy as evidenced by increase and improvement in the functional status, median weight and CD4 + cell count

Prevalence and Predictors of Storage of Unused Medicines among Households in Northwestern Ethiopia

Background. Unused medicines are those that are expired, discontinued, deteriorated, and/or not intended for any future use. The aim of this study was to assess the prevalence of unused medicines and predicting factors in households of Awi zone, Amhara regional state, Northwestern Ethiopia. Methods. A community-based cross-sectional study was conducted. A survey of unused medicines was conducted through interviews with representatives of households. The collected data were entered with Epi Data version 3.1 and exported to SPSS version 21 for analysis. Predictors of storage of unused medicines were assessed through binary and multivariable logistic regression methods. A confidence interval of 95% and a P-value of <0.05 were considered to declare statistical significance. Results. Of the total of 507 households surveyed, 70 (13.8%) were found to have unused medicines. These constituted twenty-eight types of unused medicines. Anti-infective medicines were the most commonly unused medicines, 58.9%. People who pay for medicines by themselves, those who lacked knowledge about medicines, and those who did not receive enough counseling about medicines they took were found to be 2.6, 4.8, and 3 times more likely to have unused medicines, respectively. Conclusion. A significant amount of unused medicines was present in the community. Strategies aimed at educating the public regarding the safe disposal of unused medicines and an organized method of collection and disposal of unused medicines in the community need to be introduced