A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Journal of General Internal Medicine

Volumn 30, Issue 10, 2015, Pages 1497-1504

  Wolff, Jennifer L ^a   Boyd, Cynthia M ^b  

^a JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^b JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

decision making; older adults; patient centered care; self management; treatment burden

Indexed keywords

AGED; ARTICLE; FAMILY CENTERED CARE; FEMALE; GERIATRIC CARE; HEALTH CARE; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL DECISION MAKING; OBSERVATIONAL STUDY; PATIENT CARE; PATIENT PREFERENCE; SELF CARE; DECISION MAKING; DOCTOR PATIENT RELATION; EPIDEMIOLOGY; FAMILY; FAMILY NURSING; MEDICARE; PROCEDURES; QUESTIONNAIRE; UNITED STATES; VERY ELDERLY;

AGED; AGED, 80 AND OVER; DECISION MAKING; FAMILY; FAMILY NURSING; FEMALE; HUMANS; MALE; MEDICARE; PATIENT-CENTERED CARE; PHYSICIAN-PATIENT RELATIONS; POPULATION SURVEILLANCE; SURVEYS AND QUESTIONNAIRES; UNITED STATES;

EID: 84942503664     PISSN: 08848734     EISSN: 15251497     Source Type: Journal    
DOI: 10.1007/s11606-015-3359-6     Document Type: Article

References (55)

1. Berwick DM. What 'patient-centered' should mean: confessions of an extremist. Health Aff. 2009;28:w555–w565.
2. NQF. Final report: addressing performance measure gaps in person-centered care and outcomes; 2014 August 15, 2014.
3. Tinetti ME, Fried TR, Boyd CM. Designing health care for the most common chronic condition–multimorbidity. JAMA. 2012;307:2493–2494.
4. Patient-centered care for older adults with multiple chronic conditions: a stepwise approach from the american geriatrics society: american geriatrics society expert panel on the care of older adults with multimorbidity. J Am Geriatr Soc. 2012;60:1957-68.
5. Boyd C, Darer J, Boult C, Fried L, Boult L, Wu A. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294:716–724.
6. Giovannetti ER, Wolff JL, Xue QL, et al. Difficulty assisting with health care tasks among caregivers of multimorbid older adults. J Gen Intern Med. 2011.
7. Boyd C, Wolff J, Giovannetti E, et al. Health care task difficulty among older adults with multimorbidity. Med Care. 2014;52:S118–S125.
8. Wolff J, Roter D. Family presence in routine medical visits: a meta-analytical review. Soc Sci Med. 2011;72:823–831.
9. IOM. Retooling for an aging America: building the health care workforce. Washington, DC: The National Academies Press; 2008.
10. Levinson W, Kao A, Kuby A, Thisted R. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med. 2005;20:531–535.
11. Zikmund-Fisher B, Couper M, Singer E, et al. The DECISIONS study: a nationwide survey of United States adults regarding 9 common medical decisions. Med Decis Making. 2010;30:20S–34S.
12. Naik AD, Street RL, Jr., Castillo D, Abraham NS. Health literacy and decision making styles for complex antithrombotic therapy among older multimorbid adults. Patient Educ Couns. 2011.
13. Gallacher K, Morrison D, Jani B, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10:e1001473.
14. Eton DT, Elraiyah TA, Yost KJ, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas. 2013;4:7–20.
15. Elkin EB, Kim SH, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol Off J Am Soc Clin Oncol. 2007;25:5275–5280.
16. Gallacher KI, Montori VM, May CR, Mair FS. Chapter 8: treatment burden and multimorbidity. In: Mercer SW, Salisbury C, Fortin M, eds. ABC of Multimorbidity. Hoboken: Wiley; 2014.
17. Kasper JD, Freedman VA. National health and aging trends study user guide: rounds 1 & 2, beta release. Baltimore: Johns Hopkins University School of Public Health; 2013.
18. Montaquila J, Freedman VA, Edwards B, Kasper JD. National Health and Aging Trends Study (NHATS) Round 1 Sample Design and Selection. Baltimore: Johns Hopkins University School of Public Health; 2012.
19. Montaquila J, Freedman VA, Spillman BC, Kasper JD. National health and aging trends study technical paper #6: development of round 2 survey weights. Baltimore: Johns Hopkins University School of Public Health; 2014.
20. Price EL, Bereknyei S, Kuby A, Levinson W, Braddock CH 3rd. New elements for informed decision making: a qualitative study of older adults’ views. Patient Educ Couns. 2012;86:335–341.
21. Legare F, Stacey D, Pouliot S, et al. Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care. 2011;25:18–25.
22. Vijan S, Hayward R, Ronis D, Hofer T. Brief report: the burden of diabetes therapy: implications for the design of effective patient-centered treatment regimens. J Gen Intern Med. 2005;20:479–482.
23. Townsend A, Hunt K, Wyke S. Managing multiple morbidity in mid-life: a qualitative study of attitudes to drug use. BMJ. 2003;327:837.
24. Bayliss E, Ellis J, Steiner J. Seniors’ self-reported multimorbidity captured biopsychosocial factors not incorporated into two other data-based morbidity measures. J Clin Epidemiol. 2008.
25. Kroenke K, Spitzer R, Williams J. The patient health questionnaire-2: validity of a two-item depression screener. Med Care. 2003;41:1284–1292.
26. Galvin JE, Roe CM, Xiong C, Morris JC. Validity and reliability of the AD8 informant interview in dementia. Neurology. 2006;67:1942–1948.
27. Kasper J, Freedman V, Spillman B. Classification of Persons by Dementia Status in the National Health and Aging Trends Study: Technical Paper #5. Baltimore: Johns Hopkins University School of Public Health; 2013.
28. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86:9–18.
29. Bastiaens H, Van Royen P, Pavlic DR, Raposo V, Baker R. Older people’s preferences for involvement in their own care: a qualitative study in primary health care in 11 European countries. Patient Educ Couns. 2007;68:33–42.
30. Belcher V, Fried T, Agostini J, Tinetti M. Views of older adults on patient participation in medication-related decision making. J Gen Intern Med. 2006;21:298–303.
31. Morton R, Tong A, Howard K, Snelling P, Webster A. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010;340:c112.
32. Smith SK, Dixon A, Trevena L, Nutbeam D, McCaffery KJ. Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Soc Sci Med. 2009;69:1805–1812.
33. Ho A. Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci. 2008;22:128–135.
34. Torke AM, Sachs GA, Helft PR, et al. Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med. 2014.
35. Levine C, Halper D, Rutberg J, Gould DA. Engaging family caregivers as partners in transitions. New York, NY: United Hospital Fund; 2013.
36. Walter LC, Eng C, Covinsky KE. Screening mammography for frail older women: what are the burdens? J Gen Intern Med. 2001;16:779–784.
37. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061–1066.
38. Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9:235–243.
39. Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310:2503–2504.
40. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339:b2803.
41. Reuben DB, Tinetti ME. Goal-oriented patient care–an alternative health outcomes paradigm. N Engl J Med. 2012;366:777–779.
42. Yarnall KS, Pollak KI, Ostbye T, Krause KM, Michener JL. Primary care: is there enough time for prevention? Am J Public Health. 2003;93:635–641.
43. Ostbye T, Yarnall KS, Krause KM, Pollak KI, Gradison M, Michener JL. Is there time for management of patients with chronic diseases in primary care? Ann Fam Med. 2005;3:209–214.
44. Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012;10:68.
45. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311:1052–1060.
46. Physicians and family caregivers. A model for partnership. Council on Scientific Affairs, American Medical Association. JAMA J Am Med Assoc. 1993;269:1282-4.
47. Cahill E, Lewis L, Barg F, Bogner H. "You don’t want to burden them": older adults’ views on family involvement in care. J Fam Nurs. 2009;15:295–317.
48. Kelly K, Reinhard S, Brooks-Danso A. Professional partners supporting family caregivers. Am J Nurs. 2008;108:6–12.
49. Mair FS, May CR. Thinking about the burden of treatment. BMJ. 2014;349:g6680.
50. Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.
51. Cella D, Hahn EA, Jensen SE, Butt Z, Nowinski CJ, N. R. Methodological issues in the selection, administration, and use of patient-reported outcomes in performance measurement in health care settings. Retrieved from http://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx#t=2&s=&p=4%7C5%7C3%7C2%7C.
52. Deutsch A, Smith L, Gage B, Kelleher C, Garfinkel D. Patient-reported outcomes in performance measurement: commissioned paper on PRO-based performance measures for healthcare accountable entities: prepared for the national quality forum; 2012 October 22, 2012.
53. Giovannetti ER, Reider L, Wolff JL, et al. Do older patients and their family caregivers agree about the quality of chronic illness care? Int J Qual Health Care J Int Soc Qual Health Care / ISQua. 2013;25:515–524.
54. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529–1538.
55. Working for quality: 2013 Annual progress report to Congress: National Strategy for Quality Improvement in Health Care. 2013. (Accessed 3/13/2015, at http://www.ahrq.gov/workingforquality/.)