43 research outputs found

    Methods used for successful follow-up in a large scale national cohort study in Thailand

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    Background: Ensuring successful follow-up is essential when conducting a prospective cohort study. Most existing literature reviewing methods to ensure a high response rate is based on experience in developed nations. Findings: We report our 4-year follow-up success for a national cohort study examining the health transition underway in Thailand. We began the cohort study in 2005 with a baseline postal questionnaire sent to all 200,000 Thais enrolled as distance learning students at Sukhothai Thammathirat Open University and residing all over Thailand; 87,134 or 44% of the students responded. Subsequently we used University and national media to inform cohort members of study progress. Also, we prepared a health book with study results and health advice which was distributed to all cohort members. After 4 years we repeated the survey and achieved a 71% response rate. In this paper we report the methods used to achieve this response The initial follow-up mail-out generated a response rate of about 48% reflecting the extensive preparatory work between baseline and follow-up. After 4 rounds of telephone contact (more than 100,000 phone calls) and 4 related mail-out rounds progressively over 16 months an overall response rate was achieved of just over 71% (n = 60,774). The total cost was US$4.06/respondent - 19% for printing, 21% for postage, 14% for tape measures (included in mail-out), 18% for data processing 22% for prizes and 6% for telephone. Conclusions: Many of the methods reported as effective for mail questionnaire and cohort response rates held true for Thailand. These included being associated with a university, incentivating cooperation, follow-up contact, providing a second copy of questionnaire where necessary, and assurance of confidentiality. Telephone contact with the cohort and the small prizes given to responders were particularly important in the Thai context as was Thai leadership of the research team

    Investigation of relative risk estimates from studies of the same population with contrasting response rates and designs

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    Background: There is little empirical evidence regarding the generalisability of relative risk estimates from studies which have relatively low response rates or are of limited representativeness. The aim of this study was to investigate variation in exposure-outcome relationships in studies of the same population with different response rates and designs by comparing estimates from the 45 and Up Study, a population-based cohort study (self-administered postal questionnaire, response rate 18%), and the New South Wales Population Health Survey (PHS) (computer-assisted telephone interview, response rate ~60%). Methods: Logistic regression analysis of questionnaire data from 45 and Up Study participants (n = 101,812) and 2006/ 2007 PHS participants (n = 14,796) was used to calculate prevalence estimates and odds ratios (ORs) for comparable variables, adjusting for age, sex and remoteness. ORs were compared using Wald tests modelling each study separately, with and without sampling weights. Results: Prevalence of some outcomes (smoking, private health insurance, diabetes, hypertension, asthma) varied between the two studies. For highly comparable questionnaire items, exposure-outcome relationship patterns were almost identical between the studies and ORs for eight of the ten relationships examined did not differ significantly. For questionnaire items that were only moderately comparable, the nature of the observed relationships did not differ materially between the two studies, although many ORs differed significantly. Conclusions: These findings show that for a broad range of risk factors, two studies of the same population with varying response rate, sampling frame and mode of questionnaire administration yielded consistent estimates of exposure-outcome relationships. However, ORs varied between the studies where they did not use identical questionnaire items

    Early discontinuation of endocrine therapy for breast cancer: Who is at risk in clinical practice?

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    Purpose: Despite evidence supporting at least five years of endocrine therapy for early breast cancer, many women discontinue therapy early. We investigated the impact of initial therapy type and specific comorbidities on discontinuation of endocrine therapy in clinical practice. Methods We identified women in a population-based cohort with a diagnosis of early breast cancer and an incident dispensing of anastrozole, letrozole or tamoxifen from 2003-2008 (N = 1531). Pharmacy and health service data were used to determine therapy duration, treatment for pre-existing and post-initiation comorbidities (anxiety, depression, hot flashes, musculoskeletal pain, osteoporosis, vaginal atrophy), demographic and other clinical characteristics. Time to discontinuation of initial, and any, endocrine therapy was calculated. Cox regression determined the association of different characteristics on early discontinuation. Results Initial endocrine therapy continued for a median of 2.2 years and any endocrine therapy for 4.8 years. Cumulative probability of discontinuing any therapy was 17% after one year and 58% by five years. Initial tamoxifen, pre-existing musculoskeletal pain and newly-treated anxiety predicted shorter initial therapy but not discontinuation of any therapy. Early discontinuation of any therapy was associated with newly-treated hot flashes (HR = 2.1, 95%CI = 1.3-3.3), not undergoing chemotherapy (HR = 1.4, 95%CI = 1.1-1.8) and not undergoing mastectomy (HR = 1.5, 95%CI = 1.2-1.8). Conclusions Less than half of women completed five years of endocrine therapy. Women at greatest risk of stopping any therapy early were those with newly-treated hot flashes, no initial chemotherapy, or no initial mastectomy. This suboptimal use means that the reductions in recurrence demonstrated in clinical trials may not be realised in practice

    The Medical Genome Reference Bank contains whole genome and phenotype data of 2570 healthy elderly

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    Population health research is increasingly focused on the genetic determinants of healthy ageing, but there is no public resource of whole genome sequences and phenotype data from healthy elderly individuals. Here we describe the first release of the Medical Genome Reference Bank (MGRB), comprising whole genome sequence and phenotype of 2570 elderly Australians depleted for cancer, cardiovascular disease, and dementia. We analyse the MGRB for single-nucleotide, indel and structural variation in the nuclear and mitochondrial genomes. MGRB individuals have fewer disease-associated common and rare germline variants, relative to both cancer cases and the gnomAD and UK Biobank cohorts, consistent with risk depletion. Age-related somatic changes are correlated with grip strength in men, suggesting blood-derived whole genomes may also provide a biologic measure of age-related functional deterioration. The MGRB provides a broadly applicable reference cohort for clinical genetics and genomic association studies, and for understanding the genetics of healthy ageing
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