Recruitment into clinical research studies is a major challenge. This study was carried out to explore the perceptions and attitudes towards clinical research participation among the general public in Qatar. A population based questionnaire study was carried out at public events held in Qatar. Residents of Qatar, 18 years or above in age were surveyed, anonymously, following verbal consent. Descriptive and multivariate analyses were conducted. We administered 2517 questionnaires to examine clinical research participation, of which 2379 complete forms were analyzed. Those who had previously been approached to participate in research completed a more detailed assessment. Data showed that only 5.7% participants (n = 134) had previously been approached to participate in a clinical research study. Of these 63.4% (n = 85) had agreed to participate while 36.6% (n = 49) had declined. The main reasons for declining participation included: time constraint (47.8%, n = 11), ‘fear’ (13.0%, n = 3), lack of awareness about clinical research (8.7%, n = 2) and lack of interest (8.7%, n = 2). ‘To help others’ (31.8%, n = 27) and ‘thought it might improve my access to health care’ (24.7%, n = 21) were the prime motivators for participation. There was a general agreement among participants that their previous research experience was associated with positive outcomes for self and others, that the research conduct was ethical, and that opportunities for participation will be welcomed in future. More than ten years of stay within Qatar was a statistically significant determinant of willingness to participate, adjusted odds ratio 5.82 (95% CI 1.93–17.55), p = 0.002. Clinical research participation in Qatar needs improvement. Time constraints, lack of trust in and poor awareness about clinical research are main barriers to participation. Altruism, and improved health access are reported as prime motivators. Deeper insight in to the factors affecting clinical research participation is needed to devise evidence based policies for improvement in recruitment strategies.
Woodhouse‐Sakati syndrome (WSS) is a rare autosomal recessive neuroendocrine and ectodermal disorder caused by variants in the DCAF17 gene. In Qatar, the c.436delC variant has been reported as a possible founder pathogenic variant with striking phenotypic heterogeneity. In this retrospective study, we report on the clinical and molecular characteristics of additional 58 additional Qatari patients with WSS and compare them to international counterparts' findings. A total of 58 patients with WSS from 32 consanguineous families were identified. Ectodermal and endocrine (primary hypogonadism) manifestations were the most common presentations (100%), followed by diabetes mellitus (46%) and hypothyroidism (36%). Neurological manifestations were overlapping among patients with intellectual disability (ID) being the most common (75%), followed by sensorineural hearing loss (43%) and both ID and aggressive behavior (10%). Distinctive facial features were noted in all patients and extrapyramidal manifestations were uncommon (8.6%). This study is the largest to date on Qatari patients with WSS and highlights the high incidence and clinical heterogeneity of WSS in Qatar due to a founder variant c.436delC in the DCAF17 gene. Early suspicion of WSS among Qatari patients with hypogonadism and ID, even in the absence of other manifestations, would shorten the diagnostic odyssey, guide early and appropriate management, and avoid potential complications.
The metabolic syndrome (MetS) is described as a cluster of health conditions that are associated with an increased risk of cardiovascular disease. The clinical diagnosis of MetS in pediatrics is challenging due to differing criteria, although the estimated prevalence continues to rise. The increased prevalence of childhood obesity and insulin resistance, in both developed and developing countries, is believed to be a major contributor to MetS diagnosis in children. We review the current literature surrounding genetic predisposition, maternal influence, epigenetics, environmental and lifestyle factors pertaining to pediatric MetS with a specific emphasis on obesity and insulin resistance. We highlight and discuss recent, key studies in prenatal through to adolescent populations and review evidence suggesting that children may be pre-disposed to obesity and insulin resistance, prenatally. We also discuss several key lifestyle drivers of these conditions including poor nutrition and dietary habits, insufficient physical activity, use of electronic devices, over-consumption of caffeinated and/or sugar-sweetened beverages, as well as the importance of sleep during childhood and adolescence in relation to metabolic health. We conclude with recommendations for preventable methods to tackle this growing pediatric public health issue, which, if current trends continue, will undoubtedly compromise the health and longevity of the next adult generation.
IntroductionThe levels of chronic disease amongst the Qatari population have increased dramatically in recent years. Whilst these diseases are highly prevalent in Qatar, awareness surrounding the recognition of symptoms and the disease itself are limited. Sourcing accurate information about health conditions is crucial. It is currently unknown how Qatari people source information concerning health problems for themselves as well as others. This information, however, is essential for our understanding so that strategies can be derived to assist the population concerning the various health problems that are encountered. We explored how and where the Qatari population seek information regarding health problems.MethodsEthical approval was gained from Hamad Medical Corporation/Weill Cornell Medical College in Qatar Joint Institutional Review Board (14-00017). Adult Qataris 18–85 y were approached at different sites, including educational establishments and shopping malls, and asked to complete an anonymous questionnaire to ascertain basic information concerning demographics, health status, and utilisation of health care services during the past year and sources of health information that individuals access. The data were analysed using SPSS version 23.ResultsA total of 394 questionnaires were completed, with 62% respondents being women. More men rated their health as very good compared to women (60.1% and 53.1%, respectively). However, this was not statistically significant X2(3, 387) = 5.7, p = 0.319.Overall, more people in Qatar used the Internet as a source of health information (71.1%) than in previous studies in the USA (23.8–53.5%)(1,2). This difference between US and Qatar percentages can be explained by the fast diffusion of Internet use and overall wide spread of technology usage among Qataris (3).More women (78.7%) than men (60.8%) used the Internet as a source of seeking information about health (X2 (1, 72) = 14.8, p
Objective: To explore the perceptions and attitudes about clinical research participation prevalent amongst the general public in State of Qatar. Background: Recruitment into research trials is a major challenge and an ongoing problem for biomedical researchers.1 A recent report indicates that only 6% of eligible subjects actually participate in a clinical trial.2 Costs of low recruitment rates are high. This includes not just loss of investment made in conducting the research but a more detrimental damage of investigator and institutional reputation as a result of a failed study.3 Surveys of attitudes to research participation have rarely been done.4 There is an urgent need to study and address recruitment shortfalls to ensure that trials meet their recruitment target.1 PERCEPTIONS Study (Perceptions about Enrollment and Recruitment in Clinical Research Prevalent In State of Qatar)PERCEPTIONS Study is an elaborate, three phased, mixed design research project. Phase 1 was conducted to explore the existing attitudes and behaviours prevalent in the population in Qatar. With the dynamic National Vision 2030, Qatar is set to become world leader in health care research. Diabetes, hypertension, cancer and personalized medicine are some of the projected research goals therefore it is essential to gain an insight about the thoughts, beliefs and concerns of people that this research is meant to thrive with and eventually benefit. Methods: A survey was conducted at two large-scale public events held within the State of Qatar. Residents of Qatar who were 18 years of age or older were surveyed following a verbal consent. Those visiting/touring Qatar or under 18 years were excluded from the survey. Filled surveys were entered in Microsoft Excel and analyzed on SPSS version 23. Results: Total of 2517 surveys were conducted of which 2379 valid forms were analyzed. According to the data 5.6% respondents (n = 137) had previously been approached to participate in a clinical study. Of these 74.6% (n = 86) agreed to participate while 37.3% (n = 51) declined. Remaining 88.7% (n = 2114) of the surveyed population had never been approached to participate in a clinical study. Data was missing for 5.5% (n = 131) respondents. Main reasons for declined consent included: time constraint (50%, n = 11), ‘fear’ (13.6%, n = 3), lack of awareness about clinical research (9.1%, n = 2) and lack of interest in research (9.1%, n = 2). Maximum participation was reported in studies related to diabetes (n = 19) followed by heart diseases (n = 4). ‘To help others’ (n = 24) and ‘thought it might improve my access to health care’ (n = 21) were the prime motivators for participation. Maximum respondents (up to 50%) agreed that their research experience was associated with positive outcomes for self and others, research conduct was ethical and opportunities for participation were and will be welcomed. There was also significant disagreement that research had strong emotional repercussions or that the procedures were ‘too long’, ‘boring’ or ‘inconvenient’. Conclusion: Rate of clinical research participation in Qatar needs improvement. Out- reach to potentially eligible subjects is poor where an overwhelming majority is not approached for consent. Time constraints, lack of trust in and poor state of awareness about clinical research are main barriers to participation. Altruism, monetary benefits, improved health access are prime motivators. Length of stay in Qatar is a statistically significant determinant of recruitment in research (p < 0.002). Deeper insight into the factors affecting clinical research participation is needed to devise evidence based policies for improvement in recruitment strategies and the future of evidence based medical care.Keywords: Attitudes, Barriers, Motivators, Clinical Research, State of QatarReferences: 1. Trauth JM, Musa D, Siminoff L, Jewell IK, Ricci E. Public attitudes regarding willingness to participate in medical research studies. J Health Soc Policy 2000;12(2):23–43.2. Nair SC, Ibrahim H, Celentano DD. Clinical trials in the Middle East and North Africa (MENA) Region: grandstanding or grandeur? Contemp Clin Trials 2013 Nov;36(2):704–710.3. McCullagh MC, Sanon MA, Cohen MA. Strategies to enhance participant recruitment and retention in research involving a community-based population. Appl Nurs Res 2014 Nov;27(4):249–253.4. Teschke K, Marino S, Chu R, Tsui JK, Harris MA, Marion SA. Public opinions about participating in health research. Can J Public Health 2010 Mar-Apr;101(2):159–164.
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