scholarly journals Considerations of response bias and value in linking an existing longitudinal cohort study with national health record data

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Joanne Allen ◽  
Andy Towers ◽  
Fiona Alpass ◽  
Christine Stephens
Keyword(s):  
Cohort Study ◽  
New Zealand ◽  
National Health ◽  
Data Linkage ◽  
Longitudinal Survey ◽  
Health Record ◽  
Health Work ◽  
Longitudinal Cohort ◽  
Record Data ◽  
Retirement Study

ABSTRACTObjectiveLongitudinal cohort studies remain important sources of information in health and epidemiological research and represent a significant investment of resources. The maintenance of these cohorts over time and the representativeness of retained participants are important considerations for researchers. For those weighting the benefits of augmenting a longitudinal cohort study with data linkage to national health records, the potential for bias in consent and match rates and the utility of the newly obtained data are also key considerations. This study presents an analysis of bias associated with consent to participate and record matching in an established longitudinal cohort of older persons. We present the unique outcomes generated from this national health record data linkage project and the opportunities such variables present for longitudinal cohort studies.ApproachThe New Zealand Health, Work and Retirement study is a biennial survey of persons aged 55-85 which commenced in 2006. Over the past decade, additional cohorts have been recruited to the study, with n = 9003 older New Zealand residents participating to the year 2015. In 2013 the study began an approach to active survey participants for consent to link their longitudinal survey data to national health record data held by the New Zealand Health Information Service, including data related to hospital events, the New Zealand Cancer Registry, pharmaceutical data and mental health data. We compare self-reported longitudinal health trends associated with consent/declination to participate as well as for record match success and failure. Key outcomes derived from these national datasets for the purposes of the Health, Work and Retirement Study are described.ResultsConsent (62.5%) and declination (8.9%) to participate in the data linkage project are described in terms of the corresponding longitudinal self-reported health and socio-demographic trends for these groups. Successful and unsuccessful matches of participants to national health record data are also described. The calculation of outcomes from each of the linked datasets obtained and their potential utility in building upon existing longitudinal cohort data are also presented.ConclusionsNational health record data linkage presents a potentially valuable source of data to supplement and replicate findings related to health outcomes and expenditure derived from longitudinal cohort surveys. The challenges and successes of the New Zealand Health, Work and Retirement survey data linkage project touch upon considerations pertinent to evaluating the value of augmenting existing and ongoing longitudinal survey cohort for other researchers.

scholarly journals Stratifying risk for dementia onset using large‐scale electronic health record data: A retrospective cohort study

2020 ◽  
Vol 16 (3) ◽  
pp. 531-540 ◽  
Author(s):  
Thomas H. McCoy ◽  
Larry Han ◽  
Amelia M. Pellegrini ◽  
Rudolph E. Tanzi ◽  
Sabina Berretta ◽  
...  
Keyword(s):  
Cohort Study ◽  
Electronic Health Record ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Large Scale ◽  
Health Record ◽  
Electronic Health Record Data ◽  
Record Data ◽  
Electronic Health ◽  
Dementia Onset

Predictors of Health Deterioration Among Older Adults After 12 Months of Dialysis Therapy: A Longitudinal Cohort Study From New Zealand

2017 ◽  
Vol 70 (6) ◽  
pp. 798-806 ◽  
Author(s):  
Sarah Derrett ◽  
Ari Samaranayaka ◽  
John B.W. Schollum ◽  
Bronwen McNoe ◽  
Mark R. Marshall ◽  
...  
Keyword(s):  
Older Adults ◽  
Cohort Study ◽  
New Zealand ◽  
Longitudinal Cohort Study ◽  
Dialysis Therapy ◽  
Longitudinal Cohort ◽  
Health Deterioration

scholarly journals Epidemiology of cardiovascular death in kidney failure: an Australian and New Zealand cohort study using data linkage

Nephrology ◽  
2022 ◽  
Author(s):  
Victor Khou ◽  
Nicole L. De La Mata ◽  
Patrick J. Kelly ◽  
Philip Masson ◽  
Emma O'Lone ◽  
...  
Keyword(s):  
Cohort Study ◽  
New Zealand ◽  
Kidney Failure ◽  
Data Linkage ◽  
Cardiovascular Death ◽  
Using Data

scholarly journals Testosterone in advance age: a New Zealand longitudinal cohort study: Life and Living in Advanced Age (Te Puāwaitanga o Ngā Tapuwae Kia Ora Tonu)

BMJ Open ◽  
2017 ◽  
Vol 7 (11) ◽  
pp. e016572
Author(s):  
Martin J Connolly ◽  
Ngaire Kerse ◽  
Tim Wilkinson ◽  
Oliver Menzies ◽  
Anna Rolleston ◽  
...  
Keyword(s):  
Cohort Study ◽  
New Zealand ◽  
Serum Testosterone ◽  
Older Men ◽  
Community Dwelling ◽  
Advanced Age ◽  
Longitudinal Cohort Study ◽  
Coefficient Of Determination ◽  
Total Testosterone ◽  
Longitudinal Cohort

ObjectivesSerum testosterone (T) levels in men decline with age. Low T levels are associated with sarcopenia and frailty in men aged>80 years. T levels have not previously been directly associated with disability in older men. We explored associations between T levels, frailty and disability in a cohort of octogenarian men.SettingData from all men from Life and Living in Advanced Age Cohort Study in New Zealand, a longitudinal cohort study in community-dwelling older adults.ParticipantsCommunity-dwelling (>80 years) adult men excluding those receiving T treatment or with prostatic carcinoma.Outcomes measuresAssociations between baseline total testosterone (TT) and calculated free testosterone (fT), frailty (Fried scale) and disability (Nottingham Extended Activities of Daily Living scale (NEADL)) (baseline and 24 months) were examined using multivariate regression and Wald’s χ2techniques. Subjects with the lowest quartile of baseline TT and fT values were compared with those in the upper three quartiles.ResultsParticipants: 243 men, mean (SD) age 83.7 (2.0) years. Mean (SD) TT=17.6 (6.8) nmol/L and fT=225.3 (85.4) pmol/L. On multivariate analyses, lower TT levels were associated with frailty: β=0.41, p=0.017, coefficient of determination (R2)=0.10 and disability (NEADL) (β=−1.27, p=0.017, R2=0.11), low haemoglobin (β=−7.38, p=0.0016, R2=0.05), high fasting glucose (β=0.38, p=0.038, R2=0.04) and high C reactive protein (CRP) (β=3.57, p=0.01, R2=0.06). Low fT levels were associated with frailty (β=0.39, p=0.024, R2=0.09) but not baseline NEADL (β=−1.29, p=0.09, R2=0.09). Low fT was associated with low haemoglobin (β=−7.83, p=0.0008, R2=0.05) and high CRP (β=2.86, p=0.04, R2=0.05). Relationships between baseline TT and fT, and 24-month outcomes of disability and frailty were not significant.ConclusionsIn men over 80 years, we confirm an association between T levels and baseline frailty scores. The new finding of association between T levels and disability is potentially relevant to debates on T supplementation in older men, though, as associations were not present at 24 months, further work is needed.

scholarly journals Predictors of Health Deterioration Among Older New Zealanders Undergoing Dialysis: A Three-Year Accelerated Longitudinal Cohort Study

2021 ◽  
Vol 8 ◽  
pp. 205435812110222
Author(s):  
Reshma Shettigar ◽  
Ari Samaranayaka ◽  
John B. W. Schollum ◽  
Emma H. Wyeth ◽  
Sarah Derrett ◽  
...  
Keyword(s):  
Cohort Study ◽  
New Zealand ◽  
Sense Of Community ◽  
Kidney Failure ◽  
Longitudinal Cohort Study ◽  
Dialysis Patients ◽  
Longitudinal Cohort ◽  
Social Satisfaction ◽  
Patient Reported ◽  
New Zealanders

Background: Patient involvement in dialysis decision-making is crucial, yet little is known about patient-reported outcomes over time on dialysis. Objective: To examine health-related outcomes over 24 and 36 months in an older cohort of dialysis patients. Design: The “Dialysis outcomes in those aged ≥65 years study” is a prospective longitudinal cohort study of New Zealanders with kidney failure. Setting: Three New Zealand nephrology units. Patients: Kidney failure (dialysis and predialysis) patients aged 65 or above. We have previously described outcomes after 12 months of dialysis therapy relative to baseline. Measurements: Patient-reported social and health factors using the SF-36, EQ-5D, and Kidney Symptom Score questionnaires. Methods: This article describes and compares characteristics of 120 older kidney failure patients according to whether they report “Same/better” or “Worse” health 24 and 36 months later, and identifies predictors of “worse health.” Modified Poisson regression modeling estimated relative risks (RR) of worse health. Results: Of 120 patients at 12 months, 47.5% had worse health or had died by 24 months. Of those surviving at 24 months (n = 80), 40% had “Worse health” or had died at 36 months. Variables independently associated with reduced risk of “Worse health” (24 months) were as follows: Māori ethnicity (RR = 0.44; 95% CI = 0.26-0.75), Pacific ethnicity (RR = 0.39; 95% CI = 0.33-0.46); greater social satisfaction (RR = 0.57; 95% CI = 0.46-0.7). Variables associated with an increased risk of “Worse health” were as follows: problems with usual activities (RR = 1.32; 95% CI = 1.04-1.37); pain or discomfort (RR = 1.48; 95% CI = 1.34, 1.63). At 36 months, lack of sense of community (RR = 1.41; 95% CI = 1.18-1.69), 2 or more comorbidities (RR = 1.21; 95% CI = 1.13-1.29), and problems with poor health (RR = 1.47; 95% CI = 1.41-1.54) were associated with “Worse health.” Limitations: Participant numbers restricted the number of variables able to be included in the multivariable model, and hence there may have been insufficient power to detect certain associations. Conclusions: In this study, the majority of older dialyzing patients report “Same/better health” at 24 and 36 months. Māori and Pacific people report better outcomes on dialysis. Social and/or clinical interventions aimed at improving social satisfaction, sense of community, and help with usual activities may impact favorably on the experiences for older dialysis patients. Trial registration: Australian and New Zealand clinical trials registry: ACTRN12611000024943.

scholarly journals mRNA vaccines effectiveness against COVID-19 hospitalizations and deaths in older adults: a cohort study based on data-linkage of national health registries in Portugal

2021 ◽  
Author(s):  
Baltazar Nunes ◽  
Ana Rodrigues ◽  
Irina Kislaya ◽  
Camila Cruz ◽  
Andre Peralta-Santos ◽  
...  
Keyword(s):  
Older Adults ◽  
Cohort Study ◽  
National Health ◽  
Data Linkage ◽  
Cox Regression ◽  
Vaccine Effectiveness ◽  
Hazard Ratio ◽  
Time Dependent ◽  
Age Group ◽  
Vaccination Scheme

Background: We used electronic health registries to estimate the mRNA vaccine effectiveness (VE) against COVID-19 hospitalizations and deaths in older adults. Methods: We established a cohort of individuals aged 65 and more years, resident in Portugal mainland through data linkage of eight national health registries. For each outcome, VE was computed as one minus the confounder-adjusted hazard ratio, estimated by time-dependent Cox regression. Results: VE against COVID-19 hospitalization ≥14 days after the second dose was 94% (95%CI 88 to 97) for age-group 65-79 years old (yo) and 82% (95%CI 72 to 89) for ≥80 yo. VE against COVID-19 related deaths ≥ 14 days after second dose was 96% (95%CI 92 to 98) for age-group 65-79 yo and 81% (95%CI 74 to 87), for ≥80 yo individuals. No evidence of VE waning was observed after 98 days of second dose uptake. Conclusions: mRNA vaccine effectiveness was high for the prevention of hospitalizations and deaths in age-group 65-79 yo and ≥80 yo with a complete vaccination scheme, even after 98 days of second dose uptake.

scholarly journals Feasibility of Monitoring Health and Well-being in Emerging Adults: Pilot Longitudinal Cohort Study

10.2196/30027 ◽  
2022 ◽  
Vol 6 (1) ◽  
pp. e30027
Author(s):  
Reidar P Lystad ◽  
Diana Fajardo Pulido ◽  
Lorna Peters ◽  
Melissa Johnstone ◽  
Louise A Ellis ◽  
...  
Keyword(s):  
Cohort Study ◽  
Pilot Study ◽  
Emerging Adults ◽  
Data Linkage ◽  
Well Being ◽  
Longitudinal Cohort Study ◽  
Health Records ◽  
Longitudinal Cohort ◽  
Survey Responses ◽  
Health And Well Being

Background Emerging adulthood is a distinct segment of an individual’s life course. The defining features of this transitional period include identity exploration, instability, future possibilities, self-focus, and feeling in-between, all of which are thought to affect quality of life, health, and well-being. A longitudinal cohort study with a comprehensive set of measures would be a valuable resource for improving the understanding of the multifaceted elements and unique challenges that contribute to the health and well-being of emerging adults. Objective The main aim of this pilot study was to evaluate the feasibility and acceptability of recruiting university graduates to establish a longitudinal cohort study to inform the understanding of emerging adulthood. Methods This pilot study was conducted among graduates at a large university. It involved collecting web-based survey data at baseline (ie, graduation) and 12 months post baseline, and linking survey responses to health records from administrative data collections. The feasibility outcome measures of interest included the recruitment rate, response rate, retention rate, data linkage opt-out rate, and availability of linked health records. Descriptive statistics were used to evaluate the representativeness of the sample, completeness of the survey responses, and data linkage characteristics. Results Only 2.8% of invited graduates (238/8532) agreed to participate in this pilot cohort study, of whom 59.7% (142/238) responded to the baseline survey. The retention rate between the baseline and follow-up surveys was 69.7% (99/142). The completeness of the surveys was excellent, with the proportion of answered questions in each survey domain ranging from 87.3% to 100% in both the baseline and follow-up surveys. The data linkage opt-out rate was 32.4% (77/238). Conclusions The overall recruitment rate was poor, while the completeness of survey responses among respondents ranged from good to excellent. There was reasonable acceptability for conducting data linkage of health records from administrative data collections and survey responses. This pilot study offers insights and recommendations for future research aiming to establish a longitudinal cohort study to investigate health and well-being in emerging adults. Trial Registration Australian New Zealand Clinical Trials Registry number ACTRN12618001364268; https://tinyurl.com/teec8wh International Registered Report Identifier (IRRID) RR2-10.2196/16108

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