Benefits of Guideline Standards to Older Americans: a patient perspective IOM Committee on Standards for Developing Trustworthy Clinical Practice Guidelines Joyce Dubow, AARP January 11, 2010

Critical need to improve care Quality problems are widely recognized, well- documented Older people are high users of health care –Top ¼ of beneficiaries account for 85 percent of Medicare spending (2005) –Those age 65+ made up 13 percent of the U.S. population in 2002, but consumed 36 percent of total U.S. personal health care expenses Patients would directly benefit from more effective, efficient, and safer care Poor quality is costly

Value to older patients Patients benefit when their clinicians adhere to evidence-based guidelines Need to incent provider adherence to guidelines Financial reward Recognition –Guidelines need to be presented in formats that will facilitate adherence: brief, clear, credible

Benefits to Patients Patients and their caregivers benefit when they are informed and knowledgeable about their conditions and recommended interventions—better outcomes, often reduced costs Need to provide patients with tools to care for themselves –Decision support- help with uncertainty; risk/benefit assessment; understand what is possible, realistic –Self-management- active engagement in their own (loved one’s) care to improve: symptom management, communication with clinicians, hospital utilization (<), self-reported health status Self-efficacy or confidence is associated with health outcomes

Chronic disease self-management: lessons learned David Sobel, Kaiser Permanente Adherence to guidelines would improve outcomes. Patients need help to make healthy choices and decisions. Support includes: Timely, accurate, understandable information Involvement in collaborative decision making Goal setting and problem-solving Help managing psychosocial issues

Guidelines for Patient Guidelines Brief Clear Trustworthy Accessible Understandable Meaningful (reflects patient preferences) Consistent with other guidelines Evidence-based (preference-related evidence for health outcomes, financial considerations, esp. when there are tradeoffs) How communicated and by whom

Barriers and Challenges Numeracy –Relationship of numeracy to risk perception (A. Fagerlin) Poor numeracy skills related to difficulty in calculating benefit of a procedure Poor numeracy skills affect health outcomes

Barriers and Challenges Characteristics of older adults can affect adherence to guidelines: –Health literacy/numeracy deficits –Decision making skills –Cognitive impairment –Personal preferences Physician-centric practices –Physicians discuss risks and benefits only 9% of the time and assess understanding only 2% of the time Braddock, J Gen Intern Med. 1997;12: 339–345

Barriers and Challenges Insufficient evidence to manage many conditions affecting older persons (Reuben, 12/2009) Evidence for decisions may not fit the combination of a patient’s unique clinical and social situations Non-adherence to guidelines by clinicians and patients even when evidence exists Incorporating patient preference throughout the guideline development/implementation process remains elusive “Productive communication” not widespread (lack of empathy, desire to control…)