@article {10.1093/ageing/afaa043, title = {Self-reported vision and hallucinations in older adults: results from two longitudinal US health surveys}, journal = {Age and Ageing}, year = {2020}, note = {afaa043}, type = {Journal}, abstract = {Vision loss may be a risk factor for hallucinations, but this has not been studied at the population level.To determine the association between self-reported vision loss and hallucinations in a large community-based sample of older adults, we performed a cross-sectional and longitudinal analysis of two large, nationally representative US health surveys: the National Health and Aging Trends Study (NHATS) and the Health and Retirement Study (HRS). Visual impairment and hallucinations were self- or proxy-reported. Multivariate single and mixed effects logistic regression models were built to examine whether visual impairment and history of cataract surgery were associated with hallucinations.In NHATS (n = 1520), hallucinations were more prevalent in those who reported difficulty reading newspaper print (OR 1.77, 95\% confidence interval (CI): 1.32{\textendash}2.39) or recognising someone across the street (OR 2.48, 95\% CI: 1.86{\textendash}3.31) after adjusting for confounders. In HRS (n = 3682), a similar association was observed for overall (OR 1.32, 95\% CI: 1.08{\textendash}1.60), distance (OR 1.61, 95\% CI: 1.32{\textendash}1.96) and near eyesight difficulties (OR 1.52, 95\% CI: 1.25{\textendash}1.85). In neither sample was there a significant association between cataract surgery and hallucinations after adjusting for covariates.Visual dysfunction is associated with increased odds of hallucinations in the older US adult population. This suggests that the prevention and treatment of vision loss may potentially reduce the prevalence of hallucinations in older adults.}, keywords = {blindness, Hallucinations, Health Surveys, Older adult, Proxy, self-report, vision}, issn = {0002-0729}, doi = {10.1093/ageing/afaa043}, url = {https://academic.oup.com/ageing/advance-article-abstract/doi/10.1093/ageing/afaa043/5816673}, author = {Ali G Hamedani and Thibault, Dylan P and Shea, Judy A and Allison W Willis} } @article {8551, title = {Does the Relationship of the Proxy to the Target Person Affect the Concordance between Survey Reports and Medicare Claims Measures of Health Services Use?}, journal = {Health Serv Res}, volume = {51}, year = {2016}, month = {2016 Feb}, pages = {314-27}, abstract = {

OBJECTIVES: To compare concordance of survey reports of health service use versus claims data between self respondents and spousal and nonspousal relative proxies.

DATA SOURCES: 1995-2010 data from the Survey on Assets and Health Dynamics among the Oldest Old and 1993-2010 Medicare claims for 3,229 individuals (13,488 person-years).

STUDY DESIGN: Regression models with individual fixed effects were estimated for discordance of any hospitalizations and outpatient surgery and for the numbers of under- and over-reported physician visits.

PRINCIPAL FINDINGS: Spousal proxies were similar to self respondents on discordance. Nonspousal proxies, particularly daughters/daughters-in-law and sons/sons-in-law, had less discordance, mainly due to reduced under-reporting.

CONCLUSIONS: Survey reports of health services use from nonspousal relatives are more consistent with Medicare claims than spousal proxies and self respondents.

}, keywords = {Ambulatory Surgical Procedures, Female, Hospitalization, Humans, Insurance Claim Review, Male, Medicare, Patient Acceptance of Health Care, Proxy, Self Report, Socioeconomic factors, Spouses, United States}, issn = {1475-6773}, doi = {10.1111/1475-6773.12321}, url = {https://www.ncbi.nlm.nih.gov/pubmed/26059195}, author = {George L Wehby and Michael P Jones and Fred A Ullrich and Yiyue Lou and Frederic D Wolinsky} } @article {8677, title = {A pilot study among older adults of the concordance between their self-reports to a health survey and spousal proxy reports on their behalf.}, journal = {BMC Health Serv Res}, volume = {16}, year = {2016}, month = {2016 09 09}, pages = {485}, abstract = {

BACKGROUND: Proxy respondents are frequently used in health surveys, and the proxy is most often the spouse. Longstanding concerns linger, however, about the validity of using spousal proxies, especially for older adults. The purpose of this pilot study was to evaluate the concordance between self-reports and spousal proxy reports to a standard health survey in a small convenience sample of older married couples.

METHODS: We used the Seniors Together in Aging Research (STAR) volunteer registry at the University of Iowa to identify and consent a cross-sectional, convenience sample of 28 married husband and wife couples. Private, personal interviews with each member of the married couple using a detailed health survey based on the 2012 Health and Retirement Study (HRS) instrument were conducted using computer assisted personal interviewing software. Within couples, each wife completed the health survey first for herself and then for her husband, and each husband completed the health survey first for himself and then for his wife. The health survey topics included health ratings, health conditions, mobility, instrumental activities of daily living (IADLs), health services use, and preventative services. Percent of agreement and prevalence and bias adjusted kappa statistics (PABAKs) were used to evaluate concordance.

RESULTS: PABAK coefficients indicated moderate to excellent concordance (PABAKs >0.60) for most of the IADL, health condition, hospitalization, surgery, preventative service, and mobility questions, but only slight to fair concordance (PABAKs = -0.21 to 0.60) for health ratings, and physician and dental visits.

CONCLUSIONS: These results do not allay longstanding concerns about the validity of routinely using spousal proxies in health surveys to obtain health ratings or the number of physician and dental visits among older adults. Further research is needed in a nationally representative sample of older couples in which each wife completes the health survey first for herself and then for her husband, each husband completes the health survey first for himself and then for his wife, and both spouses{\textquoteright} Medicare claims are linked to their health survey responses to determine not just the concordance between spousal reports, but the concordance of those survey responses to the medical record.

}, keywords = {Activities of Daily Living, Aged, Aged, 80 and over, Epidemiologic Methods, Female, Health Status, Hospitalization, Humans, Iowa, Male, Medicare, Middle Aged, Patient Acceptance of Health Care, Physicians, Proxy, Spouses, United States}, issn = {1472-6963}, doi = {10.1186/s12913-016-1734-6}, author = {Frederic D Wolinsky and Ayres, Lioness and Michael P Jones and Yiyue Lou and George L Wehby and Fred A Ullrich} } @article {7881, title = {Combining direct and proxy assessments to reduce attrition bias in a longitudinal study.}, journal = {Alzheimer Dis Assoc Disord}, volume = {27}, year = {2013}, note = {Times Cited: 0}, month = {2013 Jul-Sep}, pages = {207-12}, publisher = {27}, abstract = {

Retaining severely impaired individuals poses a major challenge in longitudinal studies of determinants of dementia or memory decline. In the Health and Retirement Study (HRS), participants complete direct memory assessments biennially until they are too impaired to complete the interview. Thereafter, proxy informants, typically spouses, assess the subject{\textquoteright}s memory and cognitive function using standardized instruments. Because there is no common scale for direct memory assessments and proxy assessments, proxy reports are often excluded from longitudinal analyses. The Aging, Demographics, and Memory Study (ADAMS) implemented full neuropsychological examinations on a subsample (n=856) of HRS participants, including respondents with direct or proxy cognitive assessments in the prior HRS core interview. Using data from the ADAMS, we developed an approach to estimating a dementia probability and a composite memory score on the basis of either proxy or direct assessments in HRS core interviews. The prediction model achieved a c-statistic of 94.3\% for DSM diagnosed dementia in the ADAMS sample. We applied these scoring rules to HRS core sample respondents born 1923 or earlier (n=5483) for biennial assessments from 1995 to 2008. Compared with estimates excluding proxy respondents in the full cohort, incorporating information from proxy respondents increased estimated prevalence of dementia by 12 percentage points in 2008 (average age=89) and suggested accelerated rates of memory decline over time.

}, keywords = {Aged, Bias, Caregivers, Dementia, Female, Humans, Longitudinal Studies, Male, Neuropsychological tests, Prevalence, Proxy}, issn = {1546-4156}, doi = {10.1097/WAD.0b013e31826cfe90}, author = {Bei Wu and Tchetgen Tchetgen, Eric J and Theresa L Osypuk and White, Kellee and Mujahid, Mahasin and M. Maria Glymour} } @article {7459, title = {Advance directives and outcomes of surrogate decision making before death.}, journal = {N Engl J Med}, volume = {362}, year = {2010}, month = {2010 Apr 01}, pages = {1211-8}, publisher = {362}, abstract = {

BACKGROUND: Recent discussions about health care reform have raised questions regarding the value of advance directives.

METHODS: We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.

RESULTS: Of 3746 subjects, 42.5\% required decision making, of whom 70.3\% lacked decision-making capacity and 67.6\% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7\%) or comfort care (96.2\%) than all care possible (1.9\%); 83.2\% of subjects who requested limited care and 97.1\% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95\% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95\% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95\% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95\% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.

CONCLUSIONS: Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.

}, keywords = {Advance directives, Aged, Aged, 80 and over, Decision making, Female, Humans, Living Wills, Logistic Models, Male, Mental Competency, Middle Aged, Proxy, Terminal Care, United States}, issn = {1533-4406}, doi = {10.1056/NEJMsa0907901}, author = {Maria J Silveira and Scott Y H Kim and Kenneth M. Langa} } @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} }