Participation In Population-based Studies Research Articles

Genetic, environmental and life-style factors associated with longevity. Protocol and response of the LONGECYL Study

ObjectiveTo describe the objectives, the methodological approach, the response rate of the Genetic, Environmental and Life-style Factors Study in Castilla y León (Spain). MethodThe Health Sentinel Network studied a sample of long-lived individuals aged 95 or more (LLI). The study included biological samples processed with the Global Screening Array v3.0 that contains a total of 730,059 markers. Written consent was obtained before the examination. ConclusionsThe LLI contacted were 944, and 760 were completed studied. The 87.4% of LLI were born in Castile and Leon and only 1% were non-native of Spain. Severe cognitive impairment was declared in 8.1% of men and 19.2% of women. Genotyping was performed in 739 LLI, the 78.3% of the contacted sample. Family doctors and nurses achieve high participation in population-based studies. DNA samples were taken from 94% of fully studied LLI, and 100% of these samples where successfully genotyped.

Increased Incident Alzheimer's Disease among Individuals with Varicose Veins: A Population-Based Cohort Study.

Varicose vein may be related to increased risk of comorbidities and decreased cognitive function in the elderly, but little is known about the association between varicose vein and Alzheimer's disease. To evaluate whether there is an association between varicose veins and Alzheimer's disease. The study subjects of this cohort study were selected based on Chang Gung Research Database from January 1, 2003, to December 31, 2012. Follow-up ended December 31, 2017. A population-based study Participants: Patients aged 45 years and older with varicose veins were enrolled, and the participants of control group were selected by matching with gender, age, and index date at a 4:1 ratio. The hazard ratios associated with varicose veins were estimated using Cox regression analysis with competitive risk model. Incidence rates of Alzheimer's disease, was assessed in people with and without varicose veins. A total of 9,601 patients with varicose veins and 38,404 matched controls were enrolled in the study. The varicose veins group had higher incidence rates than the control group for Alzheimer's disease (12.60 vs 6.24 per 10,000 person-years; Hazard ratio, 1.647 [95% confidence interval, 1.326- 2.045, p<0.001]). Patients with complicated varicose veins had increased incidence of Alzheimer's disease than uncomplicated cases (adjusted HR, 1.474; 95% CI, 1.034-2.101, P=0.032). The present study demonstrated a positive association between the varicose veins and Alzheimer's disease. Physicians should be alerted to cognitive function in patients with varicose veins, especially those with presence of inflammation and ulcerations.

Participation in Population-based Research: A Qualitative, Intersectional Perspective

Abstract Background Intersectionality scholarship in public health research aims at making visible the interrelated and co-dependent nature of the social determinants of health and illness. Research examining participation in population-based studies has not yet fully integrated this perspective into the analysis such that social heterogeneity remains largely hidden. The interdisciplinary research project AdvanceRecruitment focuses on participation in the German National Cohort (GNC) from an intersectional perspective to examine which individual and collective factors determine a decision for or against participation. Methods A selective sampling strategy was employed to recruit interview participants (n = 73) according to age, participation, gender and geographical location from the overall GNC study sample. Individual GNC study centres were responsible for recruitment. Qualitative, semi-structured interviews with both participants (n = 61) and non-participants (n = 12) explored their motivations to participate, decision-making processes and experiences at the study centre. Interviews were recorded, transcribed verbatim and analysed through thematic and intersectional analyses. Results Rationales for or against study participation do not primarily vary according to identity-based criteria such as gender or age, but are shaped by a complex assemblage of individual health action, personal biography, experiences of illness and vulnerability, possibilities for social inclusion, available resources and cultural capital. These factors can be better understood through their interrelation in an integrative analysis. Discussion Intersectional approaches allow for a nuanced, complex understanding of study participation which should be considered when developing strategies for recruitment. Key messages Intersectionality contributes to a more nuanced, complex understanding of study participation. Intersectional approaches can aid the development of strategies for recruitment.

Abstract B034: Assessment of the prevalence and diagnosis of breast abnormalities among adult women in rural Ethiopia

Abstract Background: Breast cancer (BC) is the most frequently diagnosed cancer and the leading cause of cancer death among females in Ethiopia. BC screening programs are lacking and above 80% breast cancer are diagnosed at advanced stages. Ultrasound-guided fine needle aspiration (FNA) is a simple and effective approach to evaluate breast mass in resource limited countries. The aim of this study was to assess the prevalence and diagnosis of breast abnormalities among adult women in rural Ethiopia. Methods: Community based cross-sectional study was conducted among 7,573 adult women, age 15 years and older from March to April 2018 in Butajira Health and Demographic Surveillance Site, South Central Ethiopia. A two stage-stratified cluster sampling method was used to select the population-based study participants. Data were collected using a pretested interviewer-administered questionnaire to inquire about breast abnormalities from eligible respondents. Further clinical assessment with history and physical examination of those reporting breast abnormalities (e.g., lump or breast pain) were assessed by experienced surgeons. If indicated, surgeons ordered the ultrasound-guided FNA performed by pathologist and cytologic analysis was done by an experienced pathologist. Women with BC were referred to Butajira Hospital for oncologic care. Data were analyzed using EPI- Info and SPSS V20. Descriptive statistics were used to summarize clinical and pathology result. Result: Out of 7,573 women surveyed, 258 (3.4%) women with breast abnormality were identified and referred to the Butajira Health Center. Only two women had visited a health facility to seek medical care before the survey was administered. Of those who reported breast abnormalities, 246 (95.3%) women had physical examinations. Forty-nine women had findings requiring ultrasound-guided FNAs. The median age of women was 30 years old with interquartile range of 25-40 years. Of the FNAs performed, 13 (26.5%) were benign lesions, 8 (16.3%) were fibroadenomas, 9 (18.4%) were reactive lymphoid hyperplasia, and 14 (28.6%) were other noncarcinoma cases. One (2%) was suspicious of BC and required excisional biopsy for diagnosis, and 4 (8.2%) ascertained non-special type carcinoma of the breast. Of BC patients, 2 patients presented with ulcerated and fungating lesion with tumor size greater than 5cm, one patient presented with ulcerating tumor measuring 3 cm, and two patients presented with a breast mass measuring 4 cm. Conclusion: A few women with self-reported breast abnormalities in a rural region of Ethiopia sought medical attention for their problem prior to our survey. We found the prevalence of women with breast abnormalities in our population-based study was similar to reports from Liberia and Rwanda. Raising awareness of health care services available to women in rural regions of Ethiopia could increase earlier detection of breast cancer and improve quality of life. Citation Format: Wondimu Ayele Manamo, Adamu Addissie Nuramo, Ahmedin Jemal, Lesley Taylor, Eva J. Kantelhardt. Assessment of the prevalence and diagnosis of breast abnormalities among adult women in rural Ethiopia [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr B034.

Representativeness in population-based studies: A detailed description of non-response in a Danish cohort study

Decreasing rates of participation in population-based studies increasingly challenge the interpretation of study results, in both analytic and descriptive epidemiology. Consequently, estimates of possible differences between participants and non-participants are increasingly important for the interpretation of study results and generalization to the background population. An age-specific, population-based cohort of 1,198 individuals was examined at age 40, 45, 51, and 60. Participants were compared with non-participants and when possible also with the background population using a wide range of detailed information on somatic and mental health collected at each examination, including data from a clinical examination, biochemical measurements, questionnaires, interviews, and public registers. Participation rates were higher than 80% at examinations at age 40, 45, and 51, but decreased to 65% at age 60. At the baseline investigation at age 40, analyses indicated that participants were representative of the cohort as well as the background population. However, the mortality rate was higher among non-participants in the succeeding 20 years. Among living cohort members at the 60-year examination, non-participants had lower socioeconomic status, higher hospitalization rate, and a worse overall health profile than participants. The detailed data presented reinforce the contention that the health profile of non-participants is typically worse than that of participants. The results also indicate that while data from public registers give easily accessible information about non-participants, these crude proxy measures of health may not be enough to document representativeness.

A comparison of participants with non-participants in a population-based epidemiologic study: The Melbourne Visual Impairment Project

Purpose: Adequate participation in population-based studies is essential to ensure that the sample is representative of the population under investigation. Participants may differ from non-participants on important variables such as age, sex, socioeconomic status, and general health factors. The Melbourne Visual Impairment Project (Melbourne VIP) is a population-based study designed to increase understanding of the prevalence and severity of common ocular disorders affecting people 40 years of age and over. Aim: The aim of this study was to determine the potential for any non-response bias by comparing data from participants and non-participants of the Melbourne VIP.Methods: Specific demographic and general variables were compared between the two groups. The variables included age, sex, education level, and social status. The reason for non-attendance was also recorded.Results: A total of 3271 (83%) eligible residents from the 9 sample areas were screened; 46% males and 54% females. Language spoken at home was significantly associated with participation. Residents whose main language at home was not English were less likely to attend the screening centre. (OR: 0.60; CI: 0.44–0.81). The main reasons given for non-attendance by eligible residents were lack of interest (6%), too busy to attend (4%), personal illness (2%), and attend own eye specialist (2%).Conclusion: We believe these results will not impact significantly on the interpretation of gender and age-specific data from the Melbourne VIP.