Leveraging the Health and Retirement Study to Advance Palliative Care Research

Overview

Journal J Palliat Med

Specialty Critical Care

Date 2014 Apr 4

PMID 24694096

Citations 19

Authors

Amy S Kelley

Kenneth M Langa

Alexander K Smith

John Cagle

Katherine Ornstein

Maria J Silveira

Lauren Nicholas

Kenneth E Covinsky

Christine S Ritchie

Affiliations

Soon will be listed here.

Abstract

Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care.

Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas.

Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research.

Citing Articles

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The Hidden Toll of Incarceration: Exploring the Link Between Incarceration Histories and Pain Among Older Adults in the United States.

Yang Y, Lutz G, Zhang Y, Chen C, Kheirbek R Innov Aging. 2023; 7(10):igad116.

PMID: 38094938 PMC: 10714910. DOI: 10.1093/geroni/igad116.

Defining a taxonomy of Medicare-funded home-based clinical care using claims data.

Ankuda C, Ornstein K, Leff B, Rajagopalan S, Kinosian B, Brody A BMC Health Serv Res. 2023; 23(1):120.

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Life satisfaction among persons living with dementia and those without dementia.

Gotanda H, Tsugawa Y, Xu H, Reuben D J Am Geriatr Soc. 2022; 71(4):1105-1116.

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The Missing Piece of the Puzzle: High-Quality, Nonhospice, Community-Based Care for Persons with Dementia.

Aldridge M J Palliat Med. 2022; 25(9):1324-1325.

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References

Kim C, Kabeto M, Wallace R, Langa K . Quality of preventive clinical services among caregivers in the health and retirement study. J Gen Intern Med. 2004; 19(8):875-8. PMC: 1492495. DOI: 10.1111/j.1525-1497.2004.30411.x. View

Kelley A, Morrison R, Wenger N, Ettner S, Sarkisian C . Determinants of treatment intensity for patients with serious illness: a new conceptual framework. J Palliat Med. 2010; 13(7):807-13. PMC: 4968277. DOI: 10.1089/jpm.2010.0007. View

Ersek M, Carpenter J . Geriatric palliative care in long-term care settings with a focus on nursing homes. J Palliat Med. 2013; 16(10):1180-7. PMC: 3996937. DOI: 10.1089/jpm.2013.9474. View

Kelly A, Conell-Price J, Covinsky K, Cenzer I, Chang A, Boscardin W . Length of stay for older adults residing in nursing homes at the end of life. J Am Geriatr Soc. 2010; 58(9):1701-6. PMC: 2945440. DOI: 10.1111/j.1532-5415.2010.03005.x. View

Kelley A . Epidemiology of care for patients with serious illness. J Palliat Med. 2013; 16(7):730-3. PMC: 3684106. DOI: 10.1089/jpm.2013.9498. View

Katz S, Kabeto M, Langa K . Gender disparities in the receipt of home care for elderly people with disability in the United States. JAMA. 2000; 284(23):3022-7. DOI: 10.1001/jama.284.23.3022. View

Morrison R . Research priorities in geriatric palliative care: an introduction to a new series. J Palliat Med. 2013; 16(7):726-9. PMC: 3684101. DOI: 10.1089/jpm.2013.9499. View

Hurd M, Martorell P, Delavande A, Mullen K, Langa K . Monetary costs of dementia in the United States. N Engl J Med. 2013; 368(14):1326-34. PMC: 3959992. DOI: 10.1056/NEJMsa1204629. View

Silveira M, Kabeto M, Langa K . Net worth predicts symptom burden at the end of life. J Palliat Med. 2005; 8(4):827-37. DOI: 10.1089/jpm.2005.8.827. View

10.

Hanson L, Winzelberg G . Research priorities for geriatric palliative care: goals, values, and preferences. J Palliat Med. 2013; 16(10):1175-9. PMC: 3837560. DOI: 10.1089/jpm.2013.9475. View

11.

Capistrant B, Moon J, Berkman L, Glymour M . Current and long-term spousal caregiving and onset of cardiovascular disease. J Epidemiol Community Health. 2011; 66(10):951-6. PMC: 3855843. DOI: 10.1136/jech-2011-200040. View

12.

Kelley A, Ettner S, Morrison R, Du Q, Wenger N, Sarkisian C . Determinants of medical expenditures in the last 6 months of life. Ann Intern Med. 2011; 154(4):235-42. PMC: 4126809. DOI: 10.7326/0003-4819-154-4-201102150-00004. View

13.

Bischoff K, Sudore R, Miao Y, Boscardin W, Smith A . Advance care planning and the quality of end-of-life care in older adults. J Am Geriatr Soc. 2013; 61(2):209-14. PMC: 3760679. DOI: 10.1111/jgs.12105. View

14.

Wu Q, Tchetgen Tchetgen E, Osypuk T, White K, Mujahid M, Glymour M . Combining direct and proxy assessments to reduce attrition bias in a longitudinal study. Alzheimer Dis Assoc Disord. 2012; 27(3):207-12. PMC: 3731387. DOI: 10.1097/WAD.0b013e31826cfe90. View

15.

Unroe K, Meier D . Research priorities in geriatric palliative care: policy initiatives. J Palliat Med. 2013; 16(12):1503-8. PMC: 3919476. DOI: 10.1089/jpm.2013.9464. View

16.

Langa K, Plassman B, Wallace R, Herzog A, Heeringa S, Ofstedal M . The Aging, Demographics, and Memory Study: study design and methods. Neuroepidemiology. 2005; 25(4):181-91. DOI: 10.1159/000087448. View

17.

Okura T, Plassman B, Steffens D, Llewellyn D, Potter G, Langa K . Neuropsychiatric symptoms and the risk of institutionalization and death: the aging, demographics, and memory study. J Am Geriatr Soc. 2011; 59(3):473-81. PMC: 3088883. DOI: 10.1111/j.1532-5415.2011.03314.x. View

18.

Meng H, Hale L, Friedberg F . Prevalence and predictors of fatigue in middle-aged and older adults: evidence from the health and retirement study. J Am Geriatr Soc. 2010; 58(10):2033-4. PMC: 2981161. DOI: 10.1111/j.1532-5415.2010.03088.x. View

19.

Smith A, Cenzer I, Knight S, Puntillo K, Widera E, Williams B . The epidemiology of pain during the last 2 years of life. Ann Intern Med. 2010; 153(9):563-9. PMC: 3150170. DOI: 10.7326/0003-4819-153-9-201011020-00005. View

20.

Morrison R, Augustin R, Souvanna P, Meier D . America's care of serious illness: a state-by-state report card on access to palliative care in our nation's hospitals. J Palliat Med. 2011; 14(10):1094-6. PMC: 3391707. DOI: 10.1089/jpm.2011.9634. View