Accountability for patient self-management of chronic conditions;ethical analysis and a proposal

Abstract

Patient self-management (PSM) of varying portions of therapy for chronic illness is expanding. However, several current conditions of practice are ethically problematic. Standards remain process-oriented, and accountability for patient outcomes and quality of practice of both patient and provider is diffuse. PSM carries important benefits but largely unmonitored potential harms. Also, access to preparation for safe PSM appears to be skewed in favour of high socio-economic classes. This condition persists even though available evidence supports the conclusion that less advantaged patients with poor disease outcomes can be taught to self-manage, albeit they require more intensive and prolonged interventions. Routine clinical use of well-validated measurement instruments could serve to develop evidence-based standards of PSM, quality improvement and effective public policy. Development of a standard dataset would facilitate description of the effectiveness of existing programmes and comparison across programmes. Such reform will require investment in the development of instruments that measure patient ability to make sound clinical judgements and sustain PSM over changed disease and social conditions. It will take advantage of modern psychometric theory, which is increasingly necessary for building the empirical base for evidence-based healthcare.

Keywords

Accountability Chronic illness Ethics Patient self-management

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References

Porter ME , Teisberg EO Redefining health care. Boston: Harvard Business School Press, 2006.

Baily MA , Botrell M. , Lynn J. , Jennings B. The ethics of using QI methods to improve health care quality and safety. Hastings Center Report 2006; 36: S1—40.

Ham C. Paying the price for quality in primary care. Lancet 2006; 367: 147—8.

Mensing C. , Boucher J. , Cypress M. , et al. National standards for diabetes self-management education. Diabetes Care 2006; 29(suppl 1): S78—85.

Caplan AL Ethical issues surrounding forced, mandated or coerced treatment. J Substance Abuse Treatment 2006; 31: 117—20.

Yap TL , Brown CT , Emberton M. Self-management in lower urinary tract symptoms: the next major therapeutic revolution. World J Urol 2006; 24: 371—7.

Brown CT , Emberton M. Could self-management challenge pharmacotherapy as a long-term treatment for uncomplicated lower urinary tract symptoms? Current Opin Urol 2004; 14: 7—12.

Steinbrook R. Imposing personal responsibility for health . N Engl J Med 2006; 355: 753—6.

Bishop G. , Brodkey AC Personal responsibility and physician responsibility — West Virginia's Medicaid plan. N Engl J Med 2006; 355: 756—8.

10.

Blakeman T. , Macdonald W. , Bower P. , Gately C. , Chew-Graham C. A qualitative study of GPs' attitudes to self-management of chronic disease. Br J Gen Pract 2006; 56: 407—14.

11.

McGlynn EA , Kerr EA , Adams J. , Keesey J. , Asch SM The quality of health care delivered to adults in the United States. N Engl J Med 2003; 348: 2635—45.

12.

Chodosh J. , Morton SC , Mojica W. , et al. Meta-analysis: chronic disease self-management programs for older adults. Ann Intern Med 2005; 143: 427—38.

13.

Warsi A. , Wang PS , LaValley MP , Avorn J. , Solomon DH Self-management education programs in chronic disease; a systematic review and methodological critique of the literature. Arch Intern Med 2004; 164: 1641—9.

14.

Powers M. , Faden R. Social justice. New York: Oxford University Press, 2006.

15.

Glazier RH , Bajcar J. , Kennie NR , Willson K. A systematic review of interventions to improve diabetes care in socially disadvantaged populations. Diabetes Care 2006 ; 29: 1675—88.

16.

Clarke C. , Friedman SM , Shi K. , et al. Emergency department discharge instructions comprehension and compliance study. Can J Emerg Med 2005; 7: 5—11.

17.

Brown SA , Blozis SA , Kouzekanani K. , Garcia AA , Winchell M. , Hanis CL Dosage effects of diabetes self-management education for Mexican Americans . Diabetes Care 2005; 28: 527—32.

18.

Rosenbaum S. A dose of reality: assessing the Federal Trade Commission/Department of Justice report in an uninsured, underserved, and vulnerable population context. J Health Politics Policy Law 2006; 31: 657—70.

19.

Daniels N. Equity and population health; toward a broader bioethics agenda. Hastings Center Report 2006; 36: 22—35.

20.

Woolfolk A. Educational psychology, 8th edn. Boston: Allyn & Bacon, 2001.

21.

Spenceley SM , Williams BA Self-care from the perspective of people living with diabetes. Can J Nurs Res 2006; 38: 124—45.

22.

Wearden AJ , Hynd K. , Smith H. , Davies R. , Tarrier N. Idiosyncratic personal explanations for blood glucose events are associated with poorer self-management and glycemic control in adult patients with long-standing type I diabetes. Diabetes Care 2006; 29: 1208—13.

23.

Redman BK Measurement instruments in patient education, 2nd edn. New York: Springer Publishing Company, 2003.

24.

Dunn LB , Nowrangi MA , Palmer BW , Jeste DV , Saks ER Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 2006; 163: 1323—34.

25.

Young J. Ageism in services for transient ischemic attacks and stroke. BMJ 2006; 355: 508—9.

26.

Trostle JA Epidemiology and culture. New York: Cambridge University Press, 2005.

27.

Revicki DA , Cella D. , Hays RD , et al. Responsiveness and minimal important differences for patient reported outcomes. Health Qual Life Outcomes 2006; 4: 70.

28.

Kane MT Current concerns in validity theory. Educational Measurement 2001; 38: 319—42.

29.

Munshi M. , Grande L. , Hayes M. , et al. Cognitive dysfunction is associated with poor diabetes control in older adults. Diabetes Care 2006; 29: 1794—9.