Noctiluca in the Gulf of Oman and the Arabian Sea have been intensifying in recent years, posing now a threat to regional fisheries and the long-term health of an ecosystem supporting a coastal population of nearly 120 million people. We present the results of a local-scale data analysis to investigate the onset and patterns of the Noctiluca blooms, which form annually during the winter monsoon in the Gulf of Oman and in the Arabian Sea. Our approach combines methods in physical and biological oceanography with machine learning techniques. In particular, we present a robust algorithm, the variable-length Linear Dynamic Systems (vLDS) model, that extracts the causal factors and latent dynamics at the local-scale along each individual drifter trajectory, and demonstrate its effectiveness by using it to generate predictive plots for all variables and test macroscopic scientific hypotheses. The vLDS model is a new algorithm specifically designed to analyze the irregular dataset from surface velocity drifters, in which the multivariate time series trajectories are having variable or unequal lengths. The test results provide local-scale statistical evidence to support and check the macroscopic physical and biological Oceanography hypotheses on the Noctiluca blooms; it also helps identify complementary local trajectory-scale dynamics that might not be visible or discoverable at the macroscopic scale. The vLDS model also exhibits a generalization capability (as a machine learning methodology) to investigate important causal factors and hidden dynamics associated with ocean biogeochemical processes and phenomena at the population-level and local trajectory-scale.The blooms of  Noctiluca winter monsoon blooms, which form annually in the Gulf of Oman and in the Arabian Sea. Our approach relies on a combination of physical oceanography and machine learning techniques. In particular, we obtain a robust model, the variable-length Linear Dynamic System Model  that is capable of identifying the causal factors and dynamics at the local-scale population-level along each individual drifter trajectory. The difficulty of analyzing this dataset lies in its irregularity, in which all the multivariate time series trajectories do not share an equal length. This renders the conventional multivariate Linear Dynamical System (LDS) method unsuitable. The vLDS model is a new algorithm specifically designed to address this irregularity of the dataset. Furthermore, we assess the effectiveness of vLDS by generating predictive plots for all variables and testing macroscopic scientific hypotheses. Rigorously statistical, the vLDS model available in the supplementary materials  lengths. To our knowledge, no existing model can simultaneously process regularly-sampled multiple multivariate time series with variable lengths collected by velocity drifters. The goal in this paper is to describe a variable-length Linear Dynamic Systems (vLDS) model that is tailored to this particular data structure, to learn, summarize, and recover the latent dynamics for all drifter trajectories, and to generate predictive dynamics that match closely with the observed data along drifter trajectories.To understand the local-scale impact of the physico-chemical and physical oceanographic factors at the population-level on Noctiluca grew faster in light than in dark on the sea surface and in the sea water, thanks to its sun-loving endosymbiotic algae, which are thought to have survived 1.3 billion years on an oxygen-scarce Earth. However, in our study, the surface velocity drifter dataset [Noctiluca blooms from the spatio-temporal trajectory-scale. By comparing the vLDS model predictions directly with the observed ocean profiles along the drifter trajectories, we can easily visualize its predictive performance and interpret the underlying latent dynamics of the Noctiluca blooms at the trajectory scale, as discussed in the “Discussion & conclusion” Section.The previous analysis of the phytoplankton blooms in , 41–42 w dataset  and sate dataset –47 are nNoctiluca blooms, by recovering the latent dynamics that governs the probabilistic distribution of the Noctiluca concentration in space and time and by comparing the model predictions with the observed ocean profiles. Second and more importantly, it helps identify complementary local drifter-scale dynamics that might not be visible or discoverable at the macroscopic scale. The vLDS predictive plots in “Discussion & Conclusion” Section provide statistical evidence that the atmospheric deposition measured by the quantities T865 aerosol optical thickness at wavelength 865 nm does not have much impact on the underlying dynamics that are driving the Noctiluca growth, as measured by the chlorophyll a concentration (Chl a) at the time scale of two days. Third, it provides a generalizable machine learning methodology to probe important causal factors and hidden dynamics for the ocean biogeochemical processes at the local population-level along individual drifter trajectories. These scientific findings in the local trajectory-scale of the population data can lead to critical hypothesis and even conclusions at the macroscopic scale of the pooled data.The benefits of vLDS are threefold. First, it provides statistical evidence in a direct and zoomed-in manner to compare the macroscopic physical and biological oceanographic observations and the inherent physiological behavior of Chl a), from the GlobColour Project [Noctiluca blooms during winter. In practice, the Ocean color datasets have missing values at certain locations due to the limitations of the satellite coverage or the presence of clouds. The dark spots are regions with missing values  is predominantly located in the tropics , and it  Project , which pg values . For theThe temporal evolution of the satellite images reflects both physical and biological dynamics. To impose the structures of physical drivers (advection) onto the data sample, we utilized the drifter array data from the NOAA’s Global Drifter Program (GDP). These freely drifting buoys provide information about the upper ocean currents that are responsible for the advection of the planktonic particles . The LagChl a, the spatio-temporal information of the floats, namely, the latitude, longitude, velocity, speed and distance to the coast, and the physico-chemical predictors, such as CDOM, KD490, T865, PAR, and SST4, where KD490 is the diffuse attenuation coefficient at 490 nm using the Lee algorithm indicating light under the sea surface, and PAR is photosynthetically available radiation indicating light on the sea surface. The predictive plots generated by the vLDS model in our study (as displayed in Section “Discussion and Conclusions”) reveal the relationships among the physical and physico-chemical ocean profiles and the Noctiluca blooms inside a collection of chaotic drifter trajectories in the Arabian Sea region from 2002 to 2017.measurements of all the drifters in the Arabian Sea. It is known that the Lagrangian drifter trajectories are highly chaotic –51, and Chl a, CDOM, KD490, T865, PAR, and SST4, and the data associated with the drifters including id, time, latitude, longitude, velocity components, speed, and distance to the coast. Fourteen features were selected in our experiments; the variance inflation factors (VIF) on multicollinearity of all the predictors are listed in id and time are mainly used for ordering and grouping data in the vLDS model. The twelve (12) remaining factors represent the physical and physico-chemical variables that is related to the evolution of Noctiluca blooms [We merged the satellite data with the buoy data to generate a Lagrangian dataset. It is a collection of multivariate time series for each drifter with a unique id to combine the information from the satellites, namely, a blooms –26. Sinca blooms , we carra concentration onto the GDP float dataset. For any float data point with coordinates nearest and next indicate the nearest and furthest neighbors in the cube for each coordinate, respectively. We further denote the interpolation weight We note that each float record has information on its coordinates a concentration at the coordinate a concentration at Similarly, we define the weights a concentration, distance to the nearest coast, and all other predictors. As an illustration of the interpolation process, we display the distance to the nearest coast [In our implementation, we have applied the interpolation process to the chlorophyll st coast  with a r‘chlor_a’, ‘dist’, ‘cdm’, ‘kd490’, ‘t865’, ‘par’, ‘sst4’} onto the GDP floats. Along with the information on the floats, namely {‘time’, ‘id’, ‘lat’, ‘lon’, ‘ve’, ‘vn’, ‘spd’}, the interpolated float dataset becomes high dimensional  absorption coefficient at 443 nm, ‘kd490’ the diffuse attenuation coefficient at 490 nm using the Lee’s algorithm (KD490), ‘t865’ the aerosol optical thickness over water (T865), ‘par’ the photosynthetically available radiation (PAR), ‘sst4’ the 4-micron nighttime sea surface temperature (SST4), ‘id’ the id of a float, ‘ve’ the eastward velocity component, ‘vn’ the northward velocity component, and ‘spd’ the speed of a float. These physico-chemical and physical factors are chosen to represent all the possible causes for the distribution of the Noctiluca blooms in the Arabian Sea. The ‘chlor_a’ measured during the period from November 1 to March 31 are mostly attributed to Noctiluca blooms. The ‘cdm’ measures CDOM the amount of dissolved organic materials in the sea water, which supports the growth of the Noctiluca [‘dist’ measures the distance from the particle to the nearest coast, which is the source of the nutrient rich water. Moreover, in the winter season, the northwestern Arabian Sea off the coast of Oman experiences winter convective mixing from November to January, during which nutrient rich, low-oxygen, cold water is brought to the surface both by convective mixing and by cyclonic eddy activity and benefit the growth of the Noctiluca in a complex and nonlinear fashion as described in the “Discussion and Conclusions” Section. The factor ‘par’ measures PAR the amount of light that is available on the sea surface for the photosynthesis of the symbiotic green algae  represents one growth cycle of the ‘NaN’ values in the dataset in the column ‘chlor_a’ and choose a threshold of 40%. There are two cases. First, if this percentage is smaller than the threshold, the data quality for this particular float is considered to be good, and we interpolate all the missing values for each of the variables in {‘chlor_a’, ‘dist’, ‘cdm’, ‘kd490’, ‘t865’, ‘par’, ‘sst4’}. See ‘chlor_a’. Also, after the interpolation process, there might still be gaps in the time series. For instance, the float might just not have any record, including ‘NaN’, in a certain short period. In this case, the float will be further split into continuous subseries. Therefore, every interpolated float time series will go through the second step for checking and splitting, which we now describe.To enhance the quality of the raw input dataset, for each float id, we calculate the percentage of ‘NaN’ values is larger than the threshold, the data quality for this particular float is considered unsuitable for interpolation. We split the discontinuous series into smaller continuous series for ‘chlor_a’. We loop through the time series on ‘chlor_a’ and split it into smaller continuous series for ‘chlor_a’. Moreover, we assign a new derived float id to each newly generated shorter series, by adding a small increment 0.03 to the original float id. Also, we drop any series for ‘chlor_a’ of length 1. See In the other case, if this percentage of After preprocessing, the merged GDP floats dataset consisted of 186 float records. For each float, the measurement is a multivariate time series, given by a vector to denote the latent variables,  with Gaussian Noise. For the moment, we omit the superscript We use atistics , 55, we al model  of the pAlgorithm 1. Plain version of training the LDS model on one floatiter = 1, maxiter = 100, initialize iter < maxiter) dofor  dofor ( Expectation step: for float   forward iteration to compute   backward iteration to compute   compute   sum   end for if  Maximization step: update sing Eqs –5)Θ:=A,C,Γ, end forAlthough the distribution of the complete data By the assumption of independence, the joint probability of the observations and state variables across all floats expands into the product of the joint probability of the observations and state variables of all the time series generated by each float We note that, for each float, the preprocessed data of this float might generate multiple multivariate time series (see the “Data Preprocessing” Section for more details.) Under the traditional i.i.d. assumptions, the objective function of the vLDS model is simply the addition of the objective functions for each individual time series' log-likelihood with all the parameters The derivation of the update formula for the vLDS model parameters …N in Eq . We use a concentration for the particular float in The workflow of the vLDS model is described in Algorithm 2, and the averaging of the vLDS model parameters ts in Eq  is carrihttps://bitbucket.org/yy2250cu/vlds-oceancolormodeling/src/).Each Expectation-Maximization cycle of the LDS model for Gaussian random variables is guaranteed to increase the value of the complete data log-likelihood. Therefore, a standard stopping criterion for the Expectation-Maximization algorithm is based on the complete data log-likelihood in Eqs  and 4)  4) with One of the key model parameters in the LDS modeling is the dimension ce in Eq  under thlidation –61 on thWith the optimal value a concentration is shown in ‘chlor_a’, ‘cdm’, and ‘kd490’ in the recovered vLDS latent dynamics , and between the ‘chlor_a’ and ‘kd490’ (light under the sea surface) are close to linear. The tightly correlated relationships between the ‘chlor_a’ and ‘par’ (light on the sea surface PAR), and between the ‘chlor_a’ and ‘sst4’ (sea surface temperature SST4) are nonlinear. The vLDS model does not provide evidence of a strong relationship between ‘t865’ and the latent dynamics of the Noctiluca’s growth.We have introduced a new model vLDS and showed that it offers a new local-scale trajectory-based data analysis tool to recover biogeochemical mechanisms underlying chaotic drifter trajectories that might be unobservable at the macroscopic scale or accessible only in controlled laboratory experiments. The vLDS model generates predictions that recover the causal relationship among the nts Figs . The modtime, lon, lat, dist}, physical {ve, vn, spd}, and physico-chemical factors {sst4, cdm, kd490, par} are involved and correctly recovered in this 11-dimensional Noctiluca blooms. It is important to observe that vLDS also serves as a mechanism to exclude irrelevant variables, such as ‘t865’, for the underlying local trajectory-scale latent dynamics in general, beyond the results in this study for Noctiluca’s growth.Furthermore, in the vLDS model, individual components are not assumed to be mutually independent in the multivariate random variable. After the prediction step, the linear correlations are only one aspect of insights that can be obtained from vLDS. In fact, correlations are linear relationships. The latent dynamics recovered by vLDS predictions, on the other hand, is not simply a linear correlation. Although the vLDS is named Linear, it is evident from the updating formula Eq  that recCDOM, on the distribution of the Noctiluca blooms. Also, the test results imply that the nutrient and light (light on and under the sea surface) are important positive factors for the Noctiluca’s growth. Regarding the atmospheric deposition ‘t865’, the vLDS model does not provide evidence of a strong relationship between ‘t865’ and the latent dynamics of the Noctiluca’s growth  method is available at: S1 Software(DOCX)Click here for additional data file.S1 Appendix(DOCX)Click here for additional data file.


Gordon Guyatt at McMaster University in Hamilton, Canada  in 1949, “research evidence” in 1967, and “evidence‐based recommendations”  emerge in a title from 1991. Also in 1991, the term  Guyatt, . The tim Guyatt, , while i Guyatt, . By then Guyatt, .Regardless of whether the Canadians, Americans, or British invented one of the “evidence‐based” permutations, the common denominator was a perceived need for more order among an overwhelming overload of information. An added concern, at least in U.K., was that a potential iceberg of unpublished data from clinical trials was being withheld from public scrutiny. This conspiracy theory prevails even today, with fingers pointing in all directions although predominantly towards the big pharma.Oslo, Norway, is quite distant from the centres named above, and the evidence‐based movement would likely have passed unnoticed for some time if not Dr. Andy Oxman had moved directly from McMaster University to Oslo in 1994 to begin his work at the National Institute of Public Health in Norway. Soon after his arrival, the institute started organizing workshops on how to practice evidence‐based health care, and even a Nordic newsletter on EBH was launched (ISSN 0809‐5272). The National Institute of Public Health building was adjacent to the Faculty of Dentistry in Oslo, where we at the time had struggled for a decade with statistical analyses of heterogeneous clinical data from real‐life dentistry. (We are still striving!) The background was that Professor Ivar A. Mjör at the Institute for Dental Materials (NIOM) wanted to analyze accumulated data from a practice‐based research network (PBRN) among Nordic dental clinicians. Much energy was spent on rationalizing and testing statistical analyses and correct interpretation of the accumulated short‐term data versus long‐term data among an ocean of potentially explanatory variables and a range of more or less surrogate clinical outcomes. Several complex statistical approaches were attempted and discarded, including factor analyses, cluster analyses, principal component analyses, and classification and regression tree (CART) analyses. We ended up trying to explain the associations in “real‐life dentistry” by using multiple classification analysis of variance (MCA), Cox regression of survival data, and principal component analyses. Judged by the current literature, we still do not know today which statistics to apply to explain what works and what not of restorative and therapeutic care in everyday real‐life dental practice. Multilevel multivariate regression seems to become the most promising tool. I do not believe that data generated in RCTs in controlled environments by expert clinicians on highly selected study participants can be generalized to the daily situations of the ordinary general dentistry practitioner.Centre for Evidence‐based Dentistry in Oxford, UK .Also in U.K. in 1995, Dr. Alan Lawrence and Dr. Derek Richards established a https://ebd.ada.org/en). Poor computer infrastructure, access, and skills are also no longer an excuse to not learn more about EB practice. The editorial ended with a perhaps naïve statement that “As the evidence‐based approach gains momentum, it is hoped that pertinent evidence can be generated through research. Perhaps someday there is enough group data to be particularized for individual‐centered health care in a meaningful manner.” However, even if we have better evidence today in many clinical areas about the effectiveness of interventions, the overwhelming focus is on the efficacy of a device, drug or biomaterial, and less on procedures and on the prevention of oral diseases. In sum, we still have wide gaps in our evidence basis for best management of the oral health of our patients.In the inaugural issue, I remarked that many stakeholders seemed to hesitate to start practicing EBD and offered some possible explanations Jokstad, . Today, Nevertheless, I am still adamant today as I was 20 years ago that “EBD is much more than RCT, and must always be regarded as an adjunct to, and not as a substitute for sound clinical judgement and patient preferences.” We need to be reminded that every patient encounter is a unique experience and requires an individualized approach. Moreover, we must recognize that knowledge is an educated interpretation of and not synonymous with information. As clinicians, we need to be able to present to our patients relevant evidence from science in combination with our clinical knowledge acquired through experience or education and strive for shared decision‐making. From this perspective of patient empowerment, I believe that EBD has contributed to improved oral health globally over the last two decades. I do hope that the patient empowerment will continue to improve further in the next 20 years. Happy anniversary, EBD!


The purpose was to explore the exercise behavior of the Taiwanese population during leisure time and to examine the gender differences in related influential factors.The Leisure Time and Sport Questionnaire (LTSQ) conducted by the Academia Sinica in 2007 was used for analysis. Participants were drawn from the Taiwanese population aged over 18 years old. Multinomial logistic regression models were used to test the association between the frequency of exercise and related factors in all the participants, male, and female participants, respectively.In the total 2,147 participants, 47.8% reported they regularly exercised, 34.1% irregularly exercised, and 18.1% never exercised. There were no significant gender differences in the frequency of exercise, but a significant gender difference was found in the types of exercise most often practiced. Participants in one of following conditions, over 65 and under 40 years old, living in the city, having higher education levels, having a spouse or partner, enjoying exercise, feeling worthwhile to spend money on exercise, and not having to take care of others, were more likely to be engaged in regular exercise in the total population. The “enjoyment” in exercise was a significant influential factor for both sexes. Women were more likely to exercise regularly if they were aged 40–64 years old compared with those over 65 years old, have lower self-rated health scores, felt it was more worthwhile to spend money on exercise and did not have to care for another, whereas men who have higher education level and did not feel a lack of time were more likely to exercise regularly.There are gender differences in regular exercise behavior during leisure time and related influential factors among Taiwanese adults. The findings of the present study can be used when designing gender-specific health promotion programs. The benefits of being physically active have been well documented for all age groups including controlling body weight, promoting musculoskeletal functions, enhancing cardiovascular fitness, reducing the risks of coronary heart diseases, stroke, diabetes, colon cancer, breast cancer and falls –3. RegulUnderstanding the determinants that influences the behavior of being physically active is important for developing interventions of regular exercise. Currently known positive influential factors of physical activity include male gender, younger age, higher education level, being married, positive attitudes and social support , 15, 16.Barriers to exercise include environmental barriers, cost considerations, poor health condition, fear of injury, and lack of time , 20, 22.Several studies have noted gender differences in exercise participation , 24, 25.Few studies have analyzed the determinants of exercise behavior in Asian countries. However, self-rated health, self-perceived happiness, perceptions of exercise, having company to exercise, and barriers to exercise have not been analyzed in previous studies. Therefore, the purpose of this study was to attain a better understanding of the exercise behavior in an Asian population and to examine the influential factors of regular exercise behavior. We also examined gender differences in the influential factors that enhanced or hampered regular exercise in order to provide implications for future health policies and health promotion practices.The original data were from the 2007 Taiwan Social Change Survey (TSCS) conducted by the Academia Sinica, Taiwan. The TSCS survey is collected every year on different topics, and the same topic is repeatedly collected every 5 years. The 2007 TSCS data included a supplemental module, the Leisure Time and Sport Questionnaire (LTSQ), in which the participants were drawn from the Taiwanese population aged 18 years or older by a three-stage stratified probability sampling method that used Taiwan census data as the sampling frame. In total 2,147 people completed the LTSQ survey, which was used for the analysis in this study. This study used secondary data for analysis. All the participants were introduced to the study’s purpose, explained and guaranteed the protection of their anonymity, and all of them were voluntary. The study was approved by the Central regional research ethics committee, China Medical University, Taiwan .The dependent variable of this study was the frequency of exercise. Exercise was defined as physical activities performed during leisure time that were planned, structured, and repetitive for the purpose of conditioning the body. “Leisure time”referred to the free time outside of work, housework and other daily activities that had to be done regularly and could be arranged by one’s own will. As a result,“exercise”in the present study was not confused with activities completed during work, transportation to work or housework . We usedThe demographic factors included age, gender, living area, marital status, working status, and educational level. All participants were categorized into three age groups: <40, 40–64, or ≧65 years old. Living areas were categorized as countryside, suburbs, or city. Marital statuses were divided into having or not having a spouse or partner. Working statuses were divided into having or not having a full-time job. Participants’ education levels were categorized into five groups: illiterate, elementary school, high school, college, or master’s/doctoral degree or above. If the Participants were illiterate, they were assisted by the interviewer to fill out the questionnaire.Self-rated health was scored on a scale from 1 to 5 indicating “poor” to “excellent” health. .Happiness was assessed by asking the participants “Overall, how happy would you say you are?”. The responses ranged from 1 to 4, indicating “not happy at all” to “very happy.” .The perception of exercise variables included “Enjoyment” and “Worth spending money on exercise”. “Enjoyment” was assessed by asking the participants “How much enjoyment do you gain when you are engaged in physical activities in your leisure time ?”. The responses were on a scale from 1 to 5, indicating “do not enjoy at all” to “a lot of enjoyment.”  The item used to measure “Worth spending money on exercise” was “Do you feel that it is worthwhile to spend money on exercise?”. The answers ranged from 1 to 4, indicating “not worthwhile at all” to “very worthwhile.” .Social support was surveyed by asking the participants if they had company with whom they exercised. “Have company when exercising” was assessed by asking “Do you usually exercise by yourself or with company (family or friends)?”. The participants answered on a 5-point Likert scale from 1 to 5, indicating “always alone” to “always with company.” .The participants answered the question “How much would the following factors influence the frequency of your exercise during leisure time?” for five barriers including lack of facilities nearby, lack of money, poor personal health condition , care of others (elderly or children), and lack of time. The responses ranged from 1 to 4, indicating “no influence at all” to “very strong influence.” Higher scores indicated that the barrier had a greater influence on the frequency of exercise.The participants were asked to provide the exercises they did most often. We categorized all of the exercises reported into five groups: Competitive sports, Strengthening exercises, Aerobic exercises, Walking, or Recreational activities. Competitive sports referred to team sports  or racket sports  in which players would have to compete with another team or opponents. Strengthening exercises included resistance training executed in a gym or other places. Aerobic exercises included jogging, aerobic dancing, swimming, or other exercises that emphasized on using large muscle groups and cardiopulmonary training. Walking is an exercise of mild intensity and could be performed almost in any location. Recreational activities included Chi-Gong, stretching exercises, yoga, and other physical activities with low intensity or that were solely for recreation .All statistical analysis was performed using the Statistical Package for Social Science software version 20.0 . A descriptive analysis and bivariate analysis by gender were first conducted using chi-square and independent t-tests. The gender difference in exercise types in the regular and irregular exercise groups (no exercise group excluded) were analyzed by chi-square test, respectively. Finally, multinomial logistic regression models were used to test for associations between the frequency of exercise and related influential factors. The dependent variables were categorized into three groups: no exercise, irregular exercise, or regular exercise. The no exercise group was the reference group. All data of the participants were included in the multinomial logistic regression model (Model 1), and the participants were then divided by gender (Model 2 for men and Model 3 for women).The descriptive data of the total participants and the characteristics by gender are in A significant gender difference was found in the level of education, working status, self-rated health, and the perceptions of exercise. A larger proportion of men received higher education, have full time work, and have higher scores in self-rated health . The enjoyment gained from exercise was greater in men  than in women . Men felt that it was more worthy to spend money on exercise  than women . However, there was no significant gender difference in living environment, marital status, self-perceived happiness, and having company to exercise with or not.Of the five barriers to exercise, lack of money was the largest barrier , and taking care of children/elderly was the smallest  for the total population. There were significant gender differences in the barriers to exercise: lack of money, taking care of children/elderly, and lack of time. All the three barriers were larger barriers for women than men (p<0.000).The most frequent type of exercise performed by the responders are shown in The factors related to the frequency of exercise and the odds ratios are in In model 2, we found that male participants living in the suburbs were less likely to exercise irregularly than those living in the city , that those with a higher education level were more likely to exercise regularly or irregularly , and that the barrier of “having no time for exercise” had a significant relationship with less regular exercise . All of the above factors were not significant in model 3 .In model 3, we found that women aged 40–64 years were less likely to exercise regularly  and that those who did not have a spouse or partner were less likely to exercise regularly . Female participants who had better self-rated health were more likely to never exercise than to exercise irregularly , and those feeling it was more worthwhile to spend money on exercise were more likely to have better exercise behavior . As for the barriers to exercise, women who have to take care of others were less likely to exercise regularly or irregularly .The only factor that showed influence for both genders was “enjoyment” in doing exercise. A stronger significant influence was found in men  than in women .The main finding of this study was to clarify the gender differences and related influential factors in being physically active; For male participants, the significance found in living environment and education level was consistent with previous studies . A possiIn contrast, for female participants, we found those women over 65 years old were more likely to exercise regularly compared to those aged 40–64 years old. This finding concerning age was similar to a cross-sectional Asian study . There iFew studies have examined how cost will influence exercise behavior. According to the literature, exercise is negatively associated with the costs and travel time required per occasion, including member fees, parking fees, facility charges, and depending on the exercise, the cost of the exercise itself . Rather The only barrier that had a significant effect in the exercise frequency of women was the barrier of “taking care of children or the elderly”. Culture might play an important role in this result. Most Asian families have a deep bond between family members, and it is common to live with parents after adulthood or even after marriage. In a three-generation household, Women typically assume the role of caring for children and the elderly in the family. Our study did not find a significant influence of the barriers “lack of facilities”, “lack of money”, or “poor health status”. This might be because the participants in our study represented a wide range of ages (from 19 to 95) and their health conditions varied widely. The environmental barriers were not as important as the individual barriers. A possible reason for this finding is that over 50% of the participants often walked or jogged for exercise, which require neither a particular facility nor money.The data used for analysis was retrieved from the 2007 Leisure Time and Sport Questionnaire, thus people’s exercise behavior might have changed over time. Nowadays, women have higher socio-economic status and independency. Therefore, the factor “Feeling more worthy to spend money on exercise” might become a stronger significant facilitator for women. Modern women with higher economic autonomy will have more choices for exercise. The barrier “No spouse or partner”, on the other hand, might become less significant. However, some recent studies still found a significant correlation between received partner support and time of physical activity . Other sThe factors that significantly affected exercise frequency of men and women were different. This can help the development of gender-specific health promotion strategies. Men’s exercise behavior was greatly affected by the enjoyment they gain in exercise and were likely also influenced by the type of exercise performed, but they were significantly hindered by having no time. Therefore, the government can encourage corporations to create an accessible exercising environment, such as a gym or ball court, for their employees and allow them to take at least 30 minutes of work-time off three days a week to exercise. Moreover, companies can arrange contests between departments or colleagues to create competition or challenge. Regarding health promotion strategies for women, health promoting agencies can design group courses, such as yoga or aerobic dancing, and provide temporary day care services during the course to help women who are caregivers. Members can provide support and encouragement to each other to increase confidence. Additionally, to promote such courses, a celebrity with a healthy public image could be invited to be a spokesperson to provide further stimulation and motivation to attend.There were some limitations to this study. First, the time lapse from the data collected to the present day. The Sports Department of the Ministry of Education, Taiwan stated that the proportion of women engaging in regular exercise has caught up with men in 2018. Satisfaction with the government’s public sports facilities has also increased in recent years. Second, the participants were only in Taiwan, Asia. Therefore, it may be difficult to generalize the findings to western countries. Cultural difference may influence the determinants of being physically active. Third, the factors included in the analysis were drawn from secondary data. Thus some variables were unavailable in the dataset, such as knowledge of health and exercise self-efficacy. Forth, it was rather difficult to divide the exercise types into five clear categories according to the participant’s own description of the type of exercise most commonly performed. The “Walking” group may diverse in its intensity according to the paces of the participants. Moreover, the actual time of the exercise was not recorded. We assume the time for competitive sports and aerobic exercising was at least more than 30 minutes, which means the intensity was able to increase heart rate and improve cardiopulmonary capacity.There were gender differences in regular exercise participation and related influential factors among people in Taiwan. These findings give health promoters a clear picture of the type of men and women more likely to be physically active and more willing to perform exercise regularly. This can be used for future interventions and policies. Future research is needed to find the causal relationship between these factors and the frequency of exercise to further support our results. Among the factors, we are particularly interested in the different barriers that hinder men and women. Longitudinal studies can be conducted to analyze whether there is an increase in the frequency of exercise participation in companies that give employees time off to exercise, and whether the impact on men is more significant than that of women. In addition, in Taiwan, there are already some companies and department stores providing temporary care services. Future studies can be made to investigate whether the sports centers with this service can increase the participation of their members, and whether the impact on women is more significant. In addition, more factors relevant to exercise behavior, for example health knowledge and self-efficacy, should be included in the models, and age groups can be analyzed separately.S1 Questionaire(PDF)Click here for additional data file.S2 Questionaire(PDF)Click here for additional data file.S1 Data(XLSX)Click here for additional data file.


Withdrawal of disease-modifying anti-rheumatic drugs (DMARDs) once disease remission is achieved is endorsed by current international rheumatoid arthritis (RA) management guidelines. However, very little data exists concerning patients’ views of this practice. In this qualitative study, we aimed to explore patients’ perspectives on DMARD withdrawal in the setting of established RA.In this qualitative interview study, patients with stable established RA were recruited from rheumatology outpatient clinics at a large UK teaching hospital. The perceived advantages and disadvantages of DMARDs and views on DMARD withdrawal were explored in semi-structured interviews. Interview transcripts were analysed using standard qualitative techniques to construct an analytical framework.Thirteen participants  expressed their views of DMARD treatment in the context of their “normal lives”. For some patients, disadvantages such as medication side-effects and the inconvenience of safety monitoring were sufficient hindrances to their lifestyle to justify DMARD withdrawal. However, patients who were vulnerable to loss of physical function, or who had prior experience of severe rheumatoid arthritis, expressed a strong preference against DMARD withdrawal, viewing the potential for increased pain and future disability as unacceptable risks.Patients view DMARD withdrawal in the context of either restoring or threatening their “normal lives”. In this model, social and personal factors play a crucial role in influencing patients’ opinions of DMARD therapy beyond a simple consideration of medication side-effects alone. A formulaic approach to DMARD withdrawal determined and imposed by clinicians would not be successful. Instead, the discussion of DMARD withdrawal should take place with the identification of patients’ priorities and in the context of their personal disease experiences.clinicaltrials.gov (NCT02064400), retrospectively registered 17 February 2014.The online version of this article (10.1186/s41927-019-0070-y) contains supplementary material, which is available to authorized users. The traditional view of rheumatoid arthritis (RA) as a chronic destructive arthritis where pain, stiffness and disability are inevitable for all patients is now obsolete. Remission is now a realistic target of treatment for many patients through the use of modern disease modifying anti-rheumatic drugs (DMARDs), particularly when used in combination and early in the course of the disease . NeverthIt is important to recognise the dilemma facing patients when confronted with the prospect of DMARD withdrawal. Several studies have explored patients’ beliefs and experiences surrounding DMARD therapy in RA and the crucial effects of these upon medication adherence –6. Much Longitudinal cohort data in early RA suggest that up to 15% of all patients can achieve DMARD-free remission , with prIn this study we present an analysis of the issues surrounding DMARD withdrawal from the patient perspective. Through the use of semi-structured interviews we aimed to identify the perceived advantages and disadvantages of DMARD therapy, and the extent to which these and other factors influence patients’ opinions of DMARD withdrawal.We conducted a qualitative study of patients’ views on DMARD therapy and DMARD withdrawal using semi-structured interviews. The study was designed to assess the feasibility of a future clinical trial of DMARD withdrawal, and to inform the consent and counselling process required.Patients were consecutively recruited to the study from routine outpatient clinic attendances face-to-face by their rheumatology clinician in a single UK hospital. Eligible patients were identified as those who had a clinical diagnosis of RA controlled by DMARDs, with symptom onset at least 12 months previously and stable disease defined as no change in DMARD therapy or use of corticosteroids in the previous 6 months before recruitment. No patients receiving biologic therapy had been recruited after the first 10 interviews, and thus protocol-specified purposive sampling  was usedAll patients were assessed for joint pain and swelling on the day of interview by the same clinician (KB). This was combined with their most recent erythrocyte sedimentation rate (ESR) measurement to calculate their Disease Activity Score in 28 Joints (DAS28) . A retroSemi-structured patient interviews  duration of 15.2 (7.9 to 27) minutes were transcribed verbatim using conversation notation . In a quKB is a male rheumatology clinical researcher with experience in the diagnosis and management of RA, who designed and conducted the study as part of a supervised Masters degree. BT is a male rheumatology consultant with extensive experience of qualitative research including his own qualitative MD research degree, and supervision of qualitative research studies at Masters, Doctoral and post-Doctoral levels. Interview transcripts were checked against the original audio recordings and their accuracy verified by KB. Once the analytic framework was developed, this was reviewed with reference to the transcripts and agreed between all researchers. This study adheres to the COREQ  standards .The study was approved by a research ethics committee . All patients provided written informed consent before participation, which included permission to reproduce anonymised verbatim quotations from interview transcripts. Research was conducted in accordance with the Declaration of Helsinki .Thirteen patients were interviewed over a three-month period, the majority with established RA of several years duration Table . MethotrIt [methotrexate and sulfasalazine] keeps you mobile, you know? Your joints are flexible, you know, you’re able to do things that you perhaps wouldn’t be able to, you know? Just simple everyday things. .Participants identified a wide range of advantages of receiving DMARD therapy Table . In seveKB: What do you feel as the benefit to you of etanercept?Pt D: Living a normal life. Mobility, everything really that I couldn’t do when I had flare ups, which I don’t have now. It enables me to walk without pain. To do all activities without pain. A different way of life. .The ability to keep performing daily physical acts was often expressed in terms of “maintaining mobility”, “keeping steady” and ultimately “living a normal life”. In addition to permitting a ‘normal life’ through maintenance of daily activities, four patients identified DMARDs as restoring a holistic state of normality.I don’t particularly feel there has been any correction or improvement [with taking DMARDs]. But certainly I feel no worse. So like a status quo. .All patients could identify symptomatic and functional benefits of DMARD therapy. However, five patients appeared to have little expectation of DMARDs improving their own current condition. Instead, DMARD therapy was highly valued by these patients in terms of preventing future deterioration of their symptoms.I don’t wanna believe that, they [my joints] would be deformed or owt like that, you know what I mean? So, you know, if you can keep everything steady that’s great for me. The last thing that I want is to be like I have when I’ve like seized up in my fingers, and stuff like that. So, if methotrexate can sort of prevent that, I’m happy to take it. .The fear of future symptom burden and physical disability was a strong recurring theme throughout the interview process. In some cases this concern also extended to the possibility of future physical deformities, recognised as both unsightly and limiting physical ability, and was a powerful motivation to continue DMARD therapy.In summary, although a wide range of advantages of DMARDs were identified by patients in our cohort, these were framed within the context of their ability to lead a “normal life”. Many patients were fearful of future symptom burden and disability, which was sufficient motivation to continue therapy even in the absence of any short-term symptomatic relief or functional improvement.Pt I: Me [colloq. My] son who has the same, said “Have you read the leaflet? It causes terrible problems!” and I said “Well I haven’t read the leaflet and it hasn’t caused me any problems”. But he is like me husband, he reads every little last detail on the leaflet.KB: Yes, yes. Did you get a leaflet at the time?Pt I: I did, yeah.KB: Yes, yes. And why didn’t you want to read through all of it? Was it because …Pt I: Because I never do. I never read leaflets.KB: Is that because it, because you find it …Pt I: I think it would put you off. .The physical side-effects of medications were a strongly cited disadvantage of DMARD therapy Table , though If I go on holiday, I’ve got to make sure that I have a fridge where I go. I mean I’ve just been away, and it [adalimumab dose] was in the middle of our holiday, which was badly planned really. It’s just thinking of ways to keep this injection at the right temperature. .Having to order prescriptions every month, you know, go and collect them, put your tablets out every evening for the next day .The need to attend extra appointments for blood monitoring tests, order tablets from pharmacy and difficulties in transporting medication abroad were pragmatic disadvantages highlighted by six patients as interfering with a “normal” lifestyle.They’re not aware, you know, I don’t think that anybody outside this field is aware of the type of medication you take, really. .In addition, one patient who received biologic therapy also reported that DMARD therapy caused complications with their healthcare, particularly the management of comorbidities by non-rheumatology specialists who were unfamiliar with their DMARD therapy.In summary, patients could identify disadvantages to DMARDs in terms of barriers to their “normal” lifestyle and physical side-effects. For some patients (exemplified by the quotations from patients F & E above), the risk of continued symptoms, physical limitation and joint deformities were viewed as sufficient to justify DMARD therapy despite the potential disadvantages. In contrast, others (such as patient I above) chose to overlook the potential risks and focus exclusively upon the benefits of treatment as a means to justify DMARD therapy.‘Cause you wonder if you keep on taking stuff like, whether, it’s, you’re just taking it, and would you be alright without it, you know? You, you don’t know, because you just keep taking it all the time. .Patients could relate to the dilemma of DMARD withdrawal in the setting of remission and the uncertainty that this poses.I don’t know what the long term, if any long-term side effects happen with this I’ve no idea, you know, not that I remember anyway. It’s always better to stop something if you don’t need it. .KB: What would be the benefits for you do you think of stopping methotrexate?Pt K: I think, just less toxicity for your body really isn’t it? .Patients generally expressed a desire to reduce their medication, driven by concerns regarding the potential toxicity of long-term DMARD therapy. Nevertheless, these concerns tended not to focus on specific side-effects but instead as an ill-defined notion of DMARDs as deleterious to health. Two patients believed this effect to be cumulative and specific to long-term DMARD use, and hence recognised DMARD withdrawal as advantageous in limiting this effect.Pt C: I would love to come off them. I would love to come off all the tablets that I’m on.KB: And, and what would your reasons be for wanting to come off of methotrexate?Pt C: Just because I’m sick of taking tablets. .In addition, patients could also identify further benefits of DMARD withdrawal in terms of restoring a degree of normality to their lifestyle. A strong recurring theme throughout the interviews was a desire to reduce the burden of prescribed medication, which was viewed as a substantial benefit in its own right.Every now and then I go away for a reasonably longer period because I’m retired now. So I can go away for two or three months for example. So, I’m stopped from doing that because of having to consider this blood monitoring situation. And then, I cannot go away more than 6, 7 weeks. Okay? And it would have to coincide with this gap, this window, which is due to blood monitoring tests. If … I was able to do without the medication for a longer period, then that may give you back that freedom. .For four patients, the DMARD dosing and monitoring schedules posed a substantial barrier to their lifestyle. For these patients, DMARD withdrawal offered a means by which they could achieve a freedom from the constraints of DMARD monitoring and hence live a more “normal life”.Pt M: I think it’s reassuring when you’re actually doing something, when you’ve got a history of it [RA] in the family and you know how worse it can get. I don’t want to get to that point where, I’m just, you know allowing it to progress.KB: Right. So it’s actually sort of, taking the tablet almost feels like you are doing something to help control things?Pt M: Yes. So to come off of it would be worrying. .The majority (9/13) of patients who were interviewed would consider withdrawal of DMARD therapy, although four patients would never consider stopping DMARD treatment. Particularly important amongst this group was their prior experience of RA. Personal experience of previously difficult-to-control or severe RA was a strong disincentive to discontinue DMARDs. Furthermore, experience of friends or family with severe and deforming RA was also a strong factor against DMARD cessation. For one patient (Patient M), the act of taking DMARDs was seen as a positive control mechanism that could be used to prevent future deterioration of their RA. For this patient, the prospect of DMARD withdrawal represented a loss of control over their disease with consequent worry of future irreversible joint damage, reinforced by the severe RA they had witnessed within their own family.My main concern [about stopping DMARDs] is obviously if my symptoms are sort of untreated though, and continued. I don’t want to get deformities, other than what I’ve got at the minute. It could affect my job dramatically, bearing in mind we’ve all got to work longer. You know, it’s pretty hard to hold a saw or a hammer if your fingers are pointing in all directions. .In addition, patients also considered the consequences of a deterioration in RA control in terms of their individual social circumstances when contemplating DMARD withdrawal, with those in current employment or with dependent others attributing greater importance to this.In summary, patients expressed a strong desire to reduce their DMARD medication, driven by the hindrance it places upon their “normal” lifestyle and concerns regarding its potential toxicity. Nevertheless, the threat of loss of control of RA activity upon DMARD withdrawal was also considered and was prioritised by those with previous experience of severe RA or vulnerability to loss of physical function. A summary of the issues identified in the patient interviews surrounding DMARD cessation is presented in Table The patients within this study expressed views of DMARD therapy in terms of either enablement or hindrance of their daily routine and ability to live a “normal life”, a strong theme in our analysis. One strategy of normalisation is to downgrade expectations of a “normal” state, illustrated by the relatively modest definitions of normality described by many patients in this study – to walk and wash oneself without pain, for example. Nevertheless, medication represents an important tool to reduce the burden of living with RA; indeed, minimisation of the personal impact of RA and a return to normality have been demonstrated to be central priorities in recent studies of patient-reported expectations of DMARD therapy  and RA rThese patients with established RA identified advantages of DMARD therapy in terms of reduced symptoms, maintenance of mobility or prevention of future deterioration. Nevertheless, the same patients also recognised disadvantages to DMARD therapy including medication side-effects, blood safety monitoring and the practicalities of taking regular medication. This range of views regarding DMARD therapy is comparable to previous studies of patient views of long-term DMARD therapy in RA , 5.A notable recurring theme in our study was a strong desire of many patients to reduce the amount of medication they received. Indeed, a preference towards drug minimisation has been described previously in studies of long-term illness both within and outside the setting of RA . For manIn a previous qualitative study of 20 patients with RA, Markusse et al.  observedBased upon the results of our study, we propose a framework whereby patients consider the impact of DMARD withdrawal in the context of either facilitating or hindering their “normal life”. For many patients, the disadvantages of DMARD therapy pose significant lifestyle hindrances and support a preference towards DMARD withdrawal. Nevertheless, for some patients the risk of deterioration in their RA due to medication withdrawal is sufficient motivation to continue DMARD therapy. Crucially, patients who are vulnerable to loss of physical function – for example, by virtue of their employment or dependent others – or who have previous experience of severe RA, prioritise this risk and thus favoured DMARD continuation. Furthermore, it is important to note that all of the patients in this study expressed a clear preference either for or against DMARD withdrawal. This highlights the importance of an individualised approach when addressing the issue of DMARD minimisation, and suggests that simple decision pathways driven by assessments of disease activity alone would not be successful.There are several limitations to this study, not least that participants were asked to discuss their views of a theoretical withdrawal of DMARD therapy in a research environment, which may differ from their actions in practice. The interview duration was relatively short, and it is possible that longer discussions may have identified additional more complex themes. Furthermore, patients in this study were specifically asked to discuss stopping DMARD therapy in relation to a proposed future trial of complete DMARD withdrawal, and may have responded differently if asked to consider partial tapering of therapy. Nevertheless, we believe the issues raised are of relevance to clinicians and patients in the setting of both withdrawal and tapering of treatment. The limited ethnic diversity of patients attending our rheumatology department, combined with the relatively advanced age of the study cohort, may affect the generalisability of the results to other populations. Furthermore, interviewing by a clinician in a hospital setting may have influenced the range of opinions expressed by participants who may be less willing to express opinions contrary to those of their rheumatology team.  This stuWith the significant rates of remission in RA observed with modern DMARD therapy, the question of when and how to reduce the burden of immunosuppressive medication in this group of patients is of increasing importance. The withdrawal of DMARDs represents the later stages of what can often be a long and challenging illness journey, with patients’ opinions heavily influenced not only by their current personal circumstances but also by their previous experiences. Our study offers this unique insight in order to help clinicians address patients’ concerns in this fundamentally individualised and shared decision-making process.Additional file 1:Patient interview schedule. Semi-structured patient interview schedule. (PDF 308 kb)Additional file 2:Figure S1. Hierarchial tree of analytic themes relating to advantages and disavantages of DMARD therapy. (PDF 129 kb)Additional file 3:Figure S2. Hierarchical tree of analytic themes relating to withdrawal of DMARD therapy. (PDF 129 kb)


Higher levels of religiousness are associated with better mental health outcomes, but most of previous research is cross-sectional, failing to address issues of selection and reverse causation.We assessed the longitudinal association between both public and private religiousness and depressive symptoms, drawing on data from 7,719 persons aged 65 and older of the Survey of Health, Ageing and Retirement in Europe (SHARE). Repeated measurements of different aspects of religiousness and depressive symptoms were used in random and fixed-effects models in order to assess the effect of changes in religious behavior on changes in depressive symptoms.Praying more than once a day was associated with more depressive symptoms  relative to individuals who never pray, adjusted for socio-demographic characteristics, physical health covariates and history of depression, but the comparison with the fixed effects model suggests that this is the result of a selection effect. Participating weekly or more in a religious organization was associated with fewer depressive symptoms , but this appeared to be spurious after taking due account of possible confounders . Focusing on within-persons changes, we found that participating in religious organizations weekly or more was associated with more depressive symptoms .Our findings do not support that religious behavior, both public or private, may be beneficial for the mental health of older Europeans. Depression is among the most prevalent mental disorders in middle and high income countries and it is ranked as the leading cause of disability worldwide . With a One of such social determinants is religious participation. The majority of previous research suggests fairly consistent yet modest protective effects of religious participation on depression, especially for religious service attendance –11. Thisrestful” religiousness, while the latter can be described as “crisis” religiousness ”. In the fourth wave of data collection, these questions changed from how often in the past month participants had engaged in an activity to how often in the past year. The question on the frequency of participating in a religious organization in wave 4 and wave 5 include an additional answer option of “Almost every month”, along with four options that matched the previously used frequencies except for the option “Less often” now referring to “Less often than monthly”. To maintain a scale equal to the absolute frequency asked in the previous waves, we coded the responses “Almost daily” and “Almost every week” as 1, and made our reference category “No participation or less than weekly”. Second, praying was assessed by the question “Thinking about the present, how often do you pray?” and captures the personal aspect of religious involvement. We categorized responses into “Never”, “Less often than weekly”, “Weekly or a couple of times a week”, “Daily” and “More than once a day”. Third, religious education was assessed only when entering the survey by the question “Have you been educated religiously by your parents?”. We include the measure of religious education as a proxy for “restful” religiousness when looking at religiousness and its relationship with depressive symptoms.Gender, country and educational level are included as time constant covariates. Highest educational level is grouped according to the International Standard Classification of Education  into priIn OLS regression it is assumed that the observations in the sample are independent of each other. However, the same respondents contribute two or more records to our dataset which makes a direct application of OLS to our data inappropriate. To solve this dependence problem, we analyze the changes in depressive symptoms over time and explore the effects of time-varying measures of religiousness on individual depression outcomes by means of random and fixed-effects models. This way, the total number of waves is allowed to vary among respondents and respondents who are not surveyed in all waves are retained in the analyses. First, we estimate random effects models to estimate the effect of religiosity on depressive symptoms. Random effects models assume that unobserved differences between individuals that are constant over time are random , and allyit indicates the score on the depression scale for individual i at wave t. A set of measurements of religiousness (i.e. participating in a religious organization and frequency of praying) which varies over time is represented by the vector xit and a set of time-varying control variables zit with each set their respective coefficients β1 and β2. Coefficient αi is treated as a constant effect, which controls for time-invariant individual characteristics, and εit is the within-individual error term. The key distinction between the random and fixed effects model is whether αi is assumed to be correlated with the other covariates in the model. In a random effects model, αi is assumed to be independent of the other covariates, while in a fixed effects model αi represents the unmeasured confounding [The second specification is based on individual fixed-effects regressions which use within-individual changes in religiousness while controlling for all measured and unmeasured time-invariant confounders that differ across individuals ,47. An aWe follow a stepwise approach to build the models, starting with models that control for age and wave only. We then incorporate time-varying, which includes marital status, financial situation, ADL, IADL, self-rated health, suffering from a long-term health problem, history of depression, and time-constant controls, which includes gender, educational level, being religiously educated and country. We estimate individual clustered robust standard errors for all estimates. All analyses are conducted using Stata version 15.1 . The code supporting this article is available upon request from the authors.Sample baseline characteristics are summarized in It is important to note that both the mean score on the EURO-D scale and how people practice their religiousness varies across the 11 countries examined see . LookingThe estimates of model 1  show thaResults from the fixed-effects models are presented in This study adds longitudinal evidence of religiousness and its effects on depression using data from 11 European countries. Our findings confirm that religious behavior is associated with depressive symptoms in old age and that the strength and direction of this association varies among different aspects of religiosity. The results of our random effects models show that participation in religious organizations (public religious involvement) is associated with fewer depressive symptoms, while higher frequency of praying (private religious practice) is associated with higher levels of depressive symptoms. However, the protective effect of public religious involvement vanishes when we take due account of possible confounders , suggesting a spurious relationship. For example, respondents who less frequently attend a church service report higher levels of depressive symptoms merely due to health problems, or because they suffered from a depression in the past. Furthermore, we find that sex, educational level, perceived financial situation and physical health all significantly affect depressive symptoms.the most religious’ among the 11 countries examined. These results are in line with previous findings for the Mediterranean countries  which exhibit the highest levels of private religious activity compared to elsewhere in Europe [The findings complement the current US-centered literature on religiousness and mental health by looking at the European context, and its cross-national variations in mean scores on the EURO-D scale and religious participation. Looking at depression scores, we see that Southern-Europe reports higher levels of mean EURO-D scores, compared to Northern and Western-Europe, confirming findings from earlier studies ,48. Addin Europe .A key challenge in this field of research is selection: is the association between religiousness and mental health the result of religiousness influencing mental health, or are there unobserved characteristics that may confound their relationship? We attempt to address this issue by means of fixed-effects modelling which accounts for all time-constant characteristics that may influence the association between religiosity and depressive symptoms, without explicitly measuring them. This ensures that our estimates are not biased by time-invariant confounders such as genetic differences and personality traits, which may play an essential role in the relation between religiosity and mental health. Focusing on within-person variation, we find that changes in public religious behavior predict changes in depressive symptoms in a positive way, with higher levels of church attendance predicting higher levels of depressive symptoms. This finding seems counter-intuitive with previous longitudinal research on religiousness and depression in the U.S. , 30–32. Our study has several advantages over the current state of the literature. First, we use a large, representative, longitudinal sample of older Europeans, as many of the studies on religiousness and old age depression are based on unrepresentative sample, which for example, include only older adults treated in a mental health , 21 or cSome limitations should be acknowledged. First, while we do control for unmeasured time-constant confounding in our fixed effects models, unmeasured time-varying confounding remains a potential source of bias. Therefore the estimates may not be interpreted as causal. Changes in religiousness may be correlated with changes in other variables associated with depressive symptoms. For example, older persons may increase their religious involvement after the occurrence of certain life-events, such as the death of a relative, or the birth of a grandchild. Second, in a fixed effects model, the current values of the error term are prohibited to be correlated with past, present and future values of the independent variables . HoweverThis study extends prior rigorous research on the relationship between depressive symptoms and religious involvement in old age by assessing their longitudinal relationship in a representative sample of older Europeans. Our analyses demonstrate that public and individual religious involvement are associated with depressive symptoms, but in different ways. Public religious involvement measured as participation in religious activities is associated with fewer depressive symptoms, but this relationship appears to be spurious. When focusing on within-persons changes, we find that changes in church attendance are associated with higher levels of depressive symptoms, even after controlling for changes in health and financial status, history of depression and all time-constant characteristics. Regarding private religious involvement, praying is associated with more depressive symptoms. Yet, our findings suggest that this is due to a selection effect. Our findings do not provide evidence that public policy and healthcare interventions to support religious behavior, both public or private, are effective in reducing depressive symptoms in old age.


Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE.Twenty-five women with SLE consented to participate in the study. They underwent individual in-depth interviews exploring their physical concerns, emotional health, sexual well-being and fertility. NVivo software was used for analysis.Participants were either of black ancestry or mixed racial ancestry, mainly indigent with only a quarter gainfully employed. Living with pain was the most common complaint, negatively impacting on activities of daily living (ADL), family expectations, social life, sleep and intimacy. Most participants expressed challenges of living with fatigue, and many felt their fatigue was misconstrued as being ‘simply lazy’. This pernicious fatigue had negative consequences on many facets of ADL, including caring for dependants, job sustainability and sexual well-being. All participants experienced low emotional states, often associated with suicidal ideations. Many experienced difficulties with fertility and childbearing and these were exacerbated in many instances by the pessimism of health care providers, resulting in confusion and depression. Physical disfigurements resulting from lupus-associated alopecia and rashes and corticosteroid-induced weight fluctuations were a major concern. These changes often affected self-image and libido, leading to strained personal relationships. Coping mechanisms that participants adopted included intense spiritual beliefs, ‘pushing through the difficult times’ and use of alternative therapies to relief symptoms was common. A poor understanding of SLE on the part of participant’s family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and social exclusion. For most, limited income, lack of basic services, family dependencies, and comorbid diseases, such as human immune deficiency virus (HIV), exacerbated the daily negative SLE experiences.In this study of mainly indigent South African women, SLE is associated with complex, chronic and challenging life experiences. The chronic relapsing and unpredictable nature of the disease, poor understanding and acceptance of SLE, compounded by a background of poverty, inadequate social support structures, negatively impact on a range of personal, social and vocational daily life experiences. Improved access to psychosocial services and SLE education might result in better outcomes.M160633 registered 10 & 29 August 2016).(Ethics Project identification code: 275/2016 and  Systemic lupus erythematosus (SLE) is a chronic, multi-system autoimmune disorder predominantly affecting young women. This disease normally affects a broad spectrum of organs, most commonly the skin and mucous membranes, joints, kidneys, blood and the central nervous system , 2. The The World Health Organisation (WHO) defines HRQoL as a “multi-dimensional aspect in individuals which involves their experiences and perceptions of physical, psycho-social and mental states” . HRQoL iSLE occurs world-wide, but for decades was reported as rare in Africa but common and severe in individuals of African ancestry living in Europe, America and Asia , 11. DiaGiven the lack of research on HRQoL of women living with SLE in Africa, we undertook a qualitative study by interviewing individual women with SLE to explore their “lived experience” of SLE as a chronic illness. The study was based on the phenomenology approach. We aimed to obtain understanding of issues that may be under-explored or misunderstood in routine clinical care.Participants were enrolled from two tertiary academic centers - Groote Schuur Hospital, Cape Town and Chris Hani Baragwanath Academic Hospital (CHBAH), Soweto. Participants from the Cape Town site were identified from the African Genetics Lupus Network (ALUGEN), a prospective registry of SLE . PatientParticipants were purposively sampled to include younger (< 30 years) and older (> 30 years) age groups, those with skin involvement, fertility issues, and those with high disease activity versus those with quiescent disease, and participants with poor adherence to treatment. The study was conducted from September 2016–February 2017. All participants met the 2010 Systemic Lupus International Collaborating Clinics (SLICC) classification criteria for SLE , were feAn interview guide reflecting the main themes of pain, fatigue, emotional, social and work function, fertility, aesthetic concerns, coping mechanisms and medication adherence was developed to facilitate the process. This was based on the general issues faced by SLE women reported in other literature that we wanted to explore further. The interview process was based on the phenomenology approach to explore women’s “lived experience” of SLE as a chronic illness and in addition to give the researcher a clear and in-depth understanding of this phenomena , 22. A pInterviews were conducted in a language selected by the participant: English, Xhosa, Zulu, Tswana, Sotho, and Pedi. The interviewer and first author (AP) is a registered nurse and midwife fluent in all the languages. Interviews were conducted in a private, neutral room of the respective outpatient clinics, where noise and intrusion were avoided. Though most participants expressed the desire to be known, rather than to remain anonymous, in light of how much they suffer in silence, there was an agreement to choose a pseudonym and these have been used throughout the text. The interviewer was not at any stage involved in the care of participants.All interviews were audio recorded, had an average duration of 70 min and were transcribed and translated into English. In addition, field notes were taken particularly on the individual each participant’s body language. No repeat interviews were done. Data saturation was reached by the 20th participant, but after discussion between the authors, five more participants were included to consolidate the existing themes.The project was set up on NVivo 11 software, and themes were identified during the pilot phase, data collection and processing , 22. AllAP was involved in the translation process. Interviews needing translation were a mix of native languages and English in one recording, a typical communication strategy in the South African context. An accuracy check on every translation through repeated listening to the recorded interview was done while re-reading the transcription and translation and any errors rectified. AP was close to the data and the nuances required in the translation. Verbatim translation and transcription were done. AP did the initial coding using themes that emerged from the first 5 interviews. This was presented to co-authors MS and BH and they assessed the audios, translations and discussed the coding. Codes were further reviewed by all authors where it was decided that a further 5 participants were to be recruited to consolidate the existing themes. Without any disagreements, pointers on probing strategies and more codes were discovered.The Consolidated criteria for Reporting Qualitative research (COREQ)  was usedTwenty-five consenting participants were interviewed. Their mean age was 30.9 years (range: 22–45) and mean disease duration was ≥5 years range 1-5 years). Most were black Africans (72%), the remaining were of mixed racial ancestry .Younger participants were worried about the chronicity of pain and how it affected their ability to function, their sleep and their present and future life expectations. Several factors aggravated their pain including erratic adherence to medication, a cold environment and physical activity. The pain was often coupled with muscle stiffness especially in the mornings. Despite the pain, many still had to care for dependants.It’s as if you are tied in wires around the joints! .It feels like somebody’s chipping away at your bones with a nail and a hammer especially when it’s cold! .The nature of pain was described in diverse ways and all participants expressed that they struggled to explain the nature of the pain to their families, employers, community and health care providers (HCPs). Furthermore, many felt that the concept of “pain” did not describe their experience adequately.Seventeen participants disclosed living with fatigue which they described as “severe loss of energy” and “a strong need to sleep”. They expressed it as the most emotionally draining experience that no one, including HCPs, understood fully. Participants reported being viewed as ‘simply lazy’ by most family members. One participant expressed frustration at being told by her doctor that fatigue was “normal”. Fatigue impaired activities of daily living (ADL), including taking care of dependents and employment.I will not iron the laundry. I leave it. But I would wake up tired, feeling that today, I am doing nothing. I do not clean, I do nothing. I sit. I do not have strength. There is nothing I can do. I cannot even go to the shop .Even if I’m tired, I keep on doing what I’m supposed to be doing. So, I can’t really say it stopped me to do anything, as I said to you I’m strong, I’ll just force myself to do things. I feel everything is only in the mind. If you say, “Today I’m tired”, then you’ll stay in bed and you’ll stay tired the whole day. So, I’m not that kind of a person. I’ll wake up in the morning and I’ll feel tired and I’ll say, “Today I told myself that I’m going to do this,” and I’m going to do it tired or not. So, I’m that kind of a person. Even if I feel tired, still it doesn’t stop me .One participant described a day without fatigue as a ‘happy day’ which occurred ‘seldom’. While some participants succumbed to the feelings of fatigue, a few stood up against it.One participant  described her tiredness as a feeling of being in a very long distance race. Furthermore, it was coupled with weakness and dizziness and struggling with sitting for extended periods of time. Like most participants, despite not being physically active at all, she felt as though she had just carried out a very heavy task.Three participants struggled with fatigue in the workplace and often found themselves sleeping while on duty and feared losing their jobs. Participant Olivia expressed her gratitude for the interview opportunity as it gave her a platform to voice that fatigue is not normal.Most participants suspected that fatigue could be from SLE and in 1 case, severe fatigue was the leading symptom that led to the diagnosis of SLE. However, most participants did not associate fatigue with disease activity, while some associated it with sun exposure, body pain or evil spirits.On Sunday at church, I was so tired, I know that it is the spirits from there because when I arrived… mmh!... fatigue came. It’s the evil spirits! .One participant  blamed supernatural powers:All 25 participants expressed various kinds of emotional problems due to the SLE diagnosis and its complications. These included dealing with the anonymity of SLE, job and career loss, aesthetic concerns, struggles with fertility and pregnancy, pain, fatigue, poor memory, sexual dysfunction and loss of intimate relationships. Feelings of sadness, anger, anxiety and symptoms of depression were voiced. Most participants expressed feeling emotional ‘out of nothing’ and having extremely bad days full of negative emotions.The most striking interview was with 25-year-old Olivia, employed, mother of one, who had several suicidal attempts without anyone’s knowledge.When I started, I would take ten pills, drink them. The second time when I get to that position I thought, okay, the last time I had ten pills and they didn’t work, meaning this time I must drink more than that. Afterwards, I feel weak, sleepy, sweaty, but I don’t say, and nobody knows - you are the first person, the first person to know about this. (sobbing uncontrollably).Only 3 participants had been diagnosed with depression. One was diagnosed with depression after being diagnosed with human immune deficiency virus (HIV) infection. She admitted to weaning herself off the anti-depressants as they made her feel out of touch with reality. In one case, the participant was adherent to her anti-depressant but showed poor coping skills while in another case, the participant stopped her medication because she believed she was not crazy. The latter participant later relapsed and needed to restart her antidepressants. One participant showed features of undiagnosed post-traumatic stress disorder (PTSD) after a miscarriage. After their interviews, 5 participants were referred, with their consent, back to their respective clinicians for further management of the depression.Jobs are also not [there] because I am not educated, it’s not easy to get a job. When I found out I have the Lupus disease I was working as a domestic worker. That’s what affected me [job nature], because of the water I was doing the laundry with hands, not with a laundry machine. It’s so difficult. It’s hard .This arthritis, my wrists would get sore, one side of the wrist would get sore then I couldn’t work. Maybe I could work with one hand .Most participants believed they deserved a social grant due to their body limitations, and 16 reported SLE-related joint pain together with fatigue as the cause of their unemployment. They struggled with work conditions such as cleaning, doing laundry, sitting for a prolonged time, a cold environment and carrying plates in a restaurant. Those who had resigned from their formal employment, cited challenges like SLE-related role limitations, together with employer dissatisfaction for the multiple hospital visits and admissions or being more at home than at work. All the 6 formally employed participants had completed tertiary education. Those without higher qualifications struggled to find or continue work. More than half of the participants had either left school before completing secondary education or had obtained inadequate grades and had abandoned tertiary education. For most, further education was impossible without financial means.On a change in lifestyle, 33-year-old Sinethemba (former domestic worker and mother of two living with lupus nephritis) disclosed that she had no choice but to sit and do nothing due to the pains and could not force herself to do anything.I am now feeling better. It’s not like in the beginning when I was very sick. I had decided to quit due to circumstances. This year I was telling her that “mom, I am quitting treatment because we don’t have money. You [mother] are supporting the family and I also require money for travel” .Limited household income was a major concern for most participants. This coupled with a poor understanding of the chronicity of SLE affected adherence to medication and attendance of follow-up visits to the Lupus clinic. Lack of transport money was also a main contributor to poor access to care amongst these indigent women.“You must do something madam! (imitating a third person)”, and when you are busy peeling potatoes; peel potatoes pain, peel potatoes pain, pain, pain, pain, pain; the whole night! .The unpredictable course of the disease and limitations to physical activities forced many women not to socialize at all. They explained that the South African social system requires attendance at funerals, weddings and parties. For one participant on peritoneal dialysis for chronic renal failure, food and drinks at social events were a challenge given her dietary and fluid restrictions. In addition, these events required a lot of physical activity that most participants could not cope with.Many participants described feelings of being drained by interacting with new people and struggling to explain their diagnosis. Hence, they resorted to being alone.When I lost weight, the community said I have HIV, it was depressing! When I gained weight, they said “she’s starting to be fresh, she is on ARV’s ” .When asked about what the community understood about SLE, nine participants explained that SLE was confused with HIV, cancer, death or witchcraft.No, there’s something wrong with you! You have a demon. We [church] have to get that demon out!Thuswa  described the reasons for her cleansing ceremony in church as arising from the community’s comments about her illness:I don’t feel that I want to be sexually active or intimate. At night I don’t sleep with a wig; with this bald head, I am shy and uncomfortable .Problems with sexuality became one of the major themes expressed. For most, a woman’s image is her sexuality, and aesthetic concerns were a main hindrance to fulfilled intimacy as they lacked the confidence and courage to engage.Fatigue and pain were also listed as contributors to poor sexual health causing tensions in intimate relationships. The majority of single and separated participants disclosed that poor sexual health was the main cause of their failed relationships and felt that their partners did not understand their condition.Participants expressed distress at a range of the SLE-related or treatment-related body changes including moon-shaped face, weight gain, weight loss, alopecia, discoid skin lesions and scars. Most felt they could not dress the way they desired. The participants who were single or separated felt their single status was mostly due to aesthetic concerns, which in turn affected self-image and libido.…because of my body, my husband left me because he’s not attracted to me. I’m not cute enough for him anymore. So those are the things that make me feel so down .Living with discoid skin lesions did not cause only excruciating physical pain, but raised emotional, social and economic issues due to the change in appearances, for about a quarter of the participants. One of them was quoted saying:When the discoid lupus started, that’s when I stopped going out, oh my goodness they (everyone) were staring at me .Perceptions on how they were seen by their society caused feelings of sadness, anger and discomfort. Most participants had low self-esteem and explained that the looks from the community or workplace colleagues were driving them to stay behind closed doors.Two years, no child. Some of them [in-laws] are going to say, “You must take this one out, this is a barren [woman]” .The doctor is not God, so he can’t say that. I want to experience to be a mother. He said I won’t be able to have children and I didn’t believe him. I prayed and now I have two. They told me the children won’t be normal. Both are normal .Childbearing was one of the important concerns and some expressed the stresses and trauma of pregnancy and fertility experiences. Many participants were put-off by the pessimism of their HCPs regarding prospects of having a family, and cited this as a cause of confusion and depression.Eleven participants admitted to poor adherence to medication. The reasons they offered included the overwhelming number of tablets they were expected to take every day, a belief that they were not sick especially when the illness was inactive, forgetfulness and side effects of the medications such as weight gain, unpleasant taste, nausea, and loss of a sense of reality (felt to be due to antidepressant medication):Too many tablets are not good, they all clash with one another. I even stopped the anti-depressant because I am not mentally sick. I’m full of side effects, that’s why I’m so sick .One participant blamed her lupus flares on the tablets:While most participants had branded chloroquine “the bitter pill” as it has a bitter taste when swallowing it, they felt that their lives were bitter just like the taste of the chloroquine.Despite their reluctance to take many tablets, lupus flares following poor adherences had forced most participants to take all their medication, making use of daily pill boxes or reminders from a phone alarm or family member.I don’t get what Lupus is, I just take my medications and come for check-ups .Twenty participants had a reasonably good understanding of SLE, while five could neither explain nor accept the diagnosis:Lupus is a very sneaky disease. It attacks you at a time that you are dumbstruck. It just slaps you in your face and you’re down. I don’t know what causes the flare-ups or what triggers it .A disease that one would never really know it until one gets it, one would never know what pain and tiredness is until they get it; an irritating and frustrating disease .It’s not like AIDS (acquired immune deficiency syndrome) - this one is still undercover. “We only know about it when we are here at the clinics” .Many found the disease mysterious and unpredictable, often with a malicious intent, a silent killer that has been there for years. Some described the SLE outcomes, especially the excruciating pain, as something they would not wish for anyone, even their worst enemy.Despite most participants describing problems socializing, family support was one of the most important tools that helped them cope with SLE. All participants reported that having either a family member, friends or partner support gave them strength to cope with the unpredictable nature of the disease. Some revealed that their supporters went as far as arranging alternative medicines for them. Moreover, participants felt that patient-led support groups, better education by HCPs, and public awareness of SLE would help them cope better with the disease. Two participants explained that their medications consistently helped prevent fatigue. Strong disease acceptance and the drive to care for oneself or a dependant was helpful. Some described their feelings as follows:“I hold my head high and I have a reason to live; my young son- he needs me” .I’m a strong woman, I’ve fought with HIV to hell and back, I’m going to beat this SLE. I’m going to take medication as I’m doing with my HIV medication and I’m going to look after myself as I always did .Many participants explained that alternative therapies helped contain the symptoms of SLE. These included drinking ‘blessed’ water from church, strong spiritual beliefs in God, traditional herbal remedies, and soothing elephant tree leaves or pressure bandage applications to painful joints., poor self-understanding of SLE, and existing illnesses and spiritual dilemmas and adherence issues.The three levels of functioning in Fig. This qualitative study reflects on the challenges of women living with SLE in poorly resourced communities of South Africa. We explored activity limitations that were exacerbated by lack of understanding and negative attitudes of family, friends and employers, costs of transport, and other factors resulting in restricted participation in work, social life and intimate relationships. Women living with SLE reported on some of the obstacles and factors which may negatively impact their HRQOL. The ICF framework demonstrates a level of disability which is an outcome of complex interactions between the SLE, activity limitations and contextual factors as shown in Fig. The confusion of HIV with lupus was a common experience amongst the participants. This is not a surprising finding as the symptoms of the two illnesses overlap . In the Our study shows that SLE has a severe impact on social lives resulting in self-imposed isolation from society at large, and impaired sexual health leading to either separation or singlehood status. These findings are similar to those described amongst Ecuadorian women with SLE were the majority of young women expressed unhappiness at not being married .Two previous South African studies have explored HRQoL - a quantitative study showed poorer social functioning amongst SLE compared to rheumatoid arthritis (RA) patients , and a qFamily support was a key element that assisted participants to cope with the disease. Their responsibility towards their dependants and conversely, family members offering support, gave them greater strength to cope with the illness. Moreover, spiritual beliefs were an important component of the coping strategies for many participants. Two Brazilian quantitative studies have similarly highlighted that SLE patients with strong spiritual beliefs had a positive outlook on life and coped better with the diagnosis , 28. UnlMuch work is needed in developing and testing of local coping strategies to overcome pain, fatigue and mental health challenges associated with SLE. These might include patient-led support groups and improved access to psychosocial services. Ongoing training for HCPs together with community awareness programmes might result in better understanding of SLE. In addition, considering the high rate of unemployment and lack of formal training amongst these women, better disability support and training opportunities are vital to alleviate the poverty that complicates the lives of patients with SLE.Whilst our results are a good reflection of the experiences of women with SLE attending the tertiary level facilities, unknown biases could have arisen during the analysis process. As the themes were presented by the first author to the co-authors for discussion, the themes were further refined. During this process, some important themes might have been excluded. In addition, variations in the moods of participants at the time of interview, might have affected their responses.In conclusion, notwithstanding these limitations, our study highlights the many complex, chronic and challenging life experiences of indigent South African women with SLE. A poor understanding, perception and acceptance of SLE by both patients and the community at large, coupled with unpredictable and mysterious nature of the disease has a profound negative impact on multiple dimensions of SLE patients. Physical disability due to pain and fatigue together with aesthetic concerns have a strong negative effect impact on mental health, social functioning, job acquisition and sexual health. Family support and spirituality are major coping strategies but stigma and lack of understanding by others also negatively affects their participation in major life activities such as employment. As mentioned above, comprehensive, multi-pronged approaches are likely to improve the overall lived experience of women with SLE.