@article {9632, title = {Semi-parametric methods of handling missing data in mortal cohorts under non-ignorable missingness.}, journal = {Biometrics}, volume = {74}, year = {2018}, pages = {1427-1437}, abstract = {We propose semi-parametric methods to model cohort data where repeated outcomes may be missing due to death and non-ignorable dropout. Our focus is to obtain inference about the cohort composed of those who are still alive at any time point (partly conditional inference). We propose: i) an inverse probability weighted method that upweights observed subjects to represent subjects who are still alive but are not observed; ii) an outcome regression method that replaces missing outcomes of subjects who are alive with their conditional mean outcomes given past observed data; and iii) an augmented inverse probability method that combines the previous two methods and is double robust against model misspecification. These methods are described for both monotone and non-monotone missing data patterns, and are applied to a cohort of elderly adults from the Health and Retirement Study. Sensitivity analysis to departures from the assumption that missingness at some visit t is independent of the outcome at visit t given past observed data and time of death is used in the data application.}, keywords = {Data collection, Datasets, Survey Methodology}, issn = {1541-0420}, doi = {10.1111/biom.12891}, author = {Wen, Lan and Shaun R Seaman} } @article {8518, title = {SSA Permissions Consent History: 1992-2012 (Public Version)}, year = {2015}, month = {11/2015}, pages = {5}, institution = {Survey Research Center, University of Michigan}, address = {Ann Arbor}, abstract = {The Health and Retirement Study (HRS) is a national longitudinal study of the economic, health, marital, and family status, as well as public and private support systems, of older Americans. The HRS is a rich source of longitudinal, cross-sectional data for researchers and policymakers who study aging. Funding for the Health and Retirement Study is provided by the National Institute on Aging at NIH (U01 AG009740), with supplemental support from the Social Security Administration. The study is conducted by the Institute for Social Research (ISR) at the University of Michigan.}, keywords = {Data collection, Meta-analyses, Survey Methodology} } @article {7370, title = {Statistical design and estimation for the national social life, health, and aging project.}, journal = {J Gerontol B Psychol Sci Soc Sci}, volume = {64 Suppl 1}, year = {2009}, month = {2009 Nov}, pages = {i12-9}, publisher = {64B}, abstract = {

OBJECTIVES: The paper discusses the sample design of the National Social Life, Health, and Aging Project (NSHAP) and how the design affects how estimates should be calculated from the survey data. The NSHAP study allows researchers to study the links between sexuality and health in older adults. The goal of the design was to represent adults aged 57-85 years in six demographic domains.

METHODS: The sample design begins with a national area probability sample of households, carried out jointly with the 2004 round of the Health and Retirement Study. Selection of respondents for NSHAP balanced age and gender subgroups and oversampled African Americans and Latinos. Data collection was carried out from July 2005 to March 2006.

RESULTS: The survey obtained an overall response rate of 75.5\%.

DISCUSSION: The complex sample design requires that the selection probabilities and the field implementation be accounted for in estimating population parameters. The data set contains weights to compensate for differential probabilities of selection and response rates among demographic groups. Analysts should use weights in constructing estimates from the survey and account for the complex sample design in estimating standard errors for survey estimates.

}, keywords = {Aged, Aged, 80 and over, Aging, Bias, Data collection, Data Interpretation, Statistical, Female, Health Status, Health Surveys, Humans, Longitudinal Studies, Male, Mass Screening, Middle Aged, Research Design, Sampling Studies, Sexual Behavior, Social Behavior, United States}, issn = {1758-5368}, doi = {10.1093/geronb/gbp045}, author = {O{\textquoteright}Muircheartaigh, Colm and Eckman, Stephanie and Smith, Stephen} } @article {7318, title = {Surrogate consent for dementia research: a national survey of older Americans.}, journal = {Neurology}, volume = {72}, year = {2009}, note = {PMID 19139366}, month = {2009 Jan 13}, pages = {149-55}, publisher = {72}, abstract = {

BACKGROUND: Research in novel therapies for Alzheimer disease (AD) relies on persons with AD as research subjects. Because AD impairs decisional capacity, informed consent often must come from surrogates, usually close family members. But policies for surrogate consent for research remain unsettled after decades of debate.

METHODS: We designed a survey module for a random subsample (n = 1,515) of the 2006 wave of the Health and Retirement Study, a biennial survey of a nationally representative sample of Americans aged 51 and older. The participants answered questions regarding one of four randomly assigned surrogate-based research (SBR) scenarios: lumbar puncture study, drug randomized control study, vaccine study, and gene transfer study. Each participant answered three questions: whether our society should allow family surrogate consent, whether one would want to participate in the research, and whether one would allow one{\textquoteright}s surrogate some or complete leeway to override stated personal preferences.

RESULTS: Most respondents stated that our society should allow family surrogate consent for SBR (67.5\% to 82.5\%, depending on the scenario) and would themselves want to participate in SBR (57.4\% to 79.7\%). Most would also grant some or complete leeway to their surrogates (54.8\% to 66.8\%), but this was true mainly of those willing to participate. There was a trend toward lower willingness to participate in SBR among those from ethnic or racial minority groups.

CONCLUSIONS: Family surrogate consent-based dementia research is broadly supported by older Americans. Willingness to allow leeway to future surrogates needs to be studied further for its ethical significance for surrogate-based research policy.

}, keywords = {Advance directives, Age Factors, Aged, Aged, 80 and over, Alzheimer disease, Biomedical Research, Caregivers, Clinical Trials as Topic, Data collection, ethnicity, Female, Humans, Informed Consent, Legal Guardians, Male, Mental Competency, Middle Aged, Patient Participation, Proxy, Research Subjects, Surveys and Questionnaires, Therapeutic Human Experimentation, Third-Party Consent}, issn = {1526-632X}, doi = {10.1212/01.wnl.0000339039.18931.a2}, author = {Scott Y H Kim and H.M. Kim and Kenneth M. Langa and Jason H. Karlawish and David S Knopman and Appelbaum, P S} }