CHAPTER 31

DECISION SUPPORT FOR CONSUMERS

Introduction:

Quality healthcare demands that patients assume increasingly central and active roles in personal health promotion and disease management.

Patients who are more informed and knowledgeable about clinical and QOL aspects of their disease and its treatment are more likely to have increased satisfaction with their care process and treatment outcomes.

Consumers – direct targets of advertising campaigns by pharmaceutical companies and pieces focused on stimulating consumers’ desire for screening for cancer and genetic defects.

Direct to consumer drug advertising determined 19% of the participants requested a prescription and 35% asked their physician for additional information about a drug after seeing an advertisement.

Enabling patients to be effective participants in the management of their health states and disease treatment requires that they have both the information and an understanding of their health risks, treatment options , and associated QOL issues.

Approaches used from previous 10 years;o Computer-based applicationso Decision making modelo General-purpose computer tools (WWW)

HEALTH-RELATED DECISION-MAKING

Health-related decision making is challenging for patients for several key reasons;1) Decision making itself is a complex, perceptual, cognitive,

and social process.2) Health-related decision making is complicated because the

substance of the problems and choices is complex and exceeds the knowledge and education of most laypersons.

3) Health-related decision-making is complex because it generally involves more than a single person.

2 key groups: - The family members of the person facing a health crisis - Healthcare industry holds clinical care standards, values,

and attitudes about patients’ responsibilities for their care and organizational or personal traditions

SHARED DECISION-MAKING AND INFORMED CHOICE

The emphasis on involving patients in healthcare decision-making has greatly increased with the widespread acceptance of shared decision-making approaches which advocates that patients are best able to determine which values should govern their care

Shared decision-makingo Also known as relationship or collaborative decision makingo Empowers patients to choose among the options available to them in consultation with

their clinicians using their personal values to frame the choice among alternatives.In the study of women with breast carcinoma; 89% - preferred an active or shared role I decision-makingIn a study of breast cancer; 22% - wanted to make a decision on their cancer treatment 44% - wanted to make decision collaboratively with their clinicians 34% - wished to defer the decision to the judgment of their clinicians 42% - believed that they had experienced the level of control of the decision that they

preferred

Informed consent o an established practice that involves the patient

acknowledging that they have received adequate information to assent to the care that is recommended by the clinician.

o A passive process that simply requires that a patient has knowledge of the treatments and the probable outcomes.

PATIENTS PREFERENCES von Neumann and Morgenstern (1964) 1st proposed that the personal values and attitudes

that drive individual choice could be understood through mathematical formulations

Ledley and Lusted (1999) Introduced the concepts of mathematical

reasoning to medical decision making with particular attention to decision-making under uncertainty

Raiffa (1968) Explicated decision analytic strategies that

brought the treatment of personal preference and uncertainty into a form accessible in an interpersonal interview

Pauker and McNeil (1981) Demonstrated the feasibility of using

decision analysis to better understand treatment choices that are complicated by multiple uncertainties and personal values.

o Decision analysis• Helps in choosing one course of action from several

when the most desired strategy depends, in part, on the knowledge of the cost, benefits, and probabilities of the resolution of the outcomes of the strategy.

o Decision theory Provides mechanism for analyzing and ranking a

sequence of health states under uncertainty to derive a numerical measure to each possible paths utility

Multiattribute utility theory (MAUT) Provides the mechanism for quantifying the subjective

value of health states and can be very useful to patients who must make healthcare decisions

COMPUTER TECHNOLOGY AND PATIENT DECISION-MAKING

Assessing Utilities of Health Outcomes• The Stanford Center for the Study of Patient Preference was pioneer in the use of

computers and internet for low-cost elicitation of patient preferences for health states• Computer surveys and instructional programs available on the WWW walked the

patient through classic decision analytic methods to help them clarify their preferences.

• Preference assessments used to measure patients utilities:Visual analog scales (VAS)Pair-wise comparisons (PWC)Standard gamble (SG)Time trade-off (TT)

Envisioning Treatment Options• The technology-based Shared Decision-Making Program (SDP) was developed

within a framework grounded in the idea that rational treatment decision-making considers both what patients wants and what the clinician views as appropriate.

• It was also design for use in clinic setting to aid patients facing complex treatment choices.

Facilitating Data Management At Dana-Farber Cancer Institute, reports of health related quality of life (HRQOL) are obtained from

cancer patients each time they go to the breast cancer outpatient clinic. Patrick and Erikson (1993) define HRQOL as “the value assigned to the duration of life as modified by

the social opportunities perceptions, functional states, and impairments that influence by disease, injuries, treatments, or policy.

Linking Preferences with Treatment Decisions• The Department of Family Practice at the Medical College Virginia

Commonwealth University, designed Health Touch, a computerized health information system for health promotion and disease prevention for use in primary care.

• The preference assessment in Health touch is semantic in nature and does not explicit decision theoretic model

• Patients used touch screen to answer 20-25 questions on personal and family history and patient preferences that affect lifestyle

• Health touch was incorporated into clinic practices in two ways: actively, by staff directing the patients to complete the survey and passively, by placing the computers in the waiting area and allowing use based on patients choice.

Efficacy of Decision AidsDecision aids for providing information regarding

treatment options and health states leading to the elicitation of patients who are facing complex healthcare decisions.

The Ottawa Health Research Institute (OHR) has developed a set of evaluation measures and instruments that can be used by implementers of DSS to asses their systems performance along the dimensions of choice predisposition, decisional conflict, regret, acceptability, knowledge, realistic expectations , values, preparation for decision-making and decision self-efficacy.

Points of Decision Support System Intervention

Acute Disease Decision Support Systems Chronic Disease Management Decision

Support System

Decision-Making to Promote Health Behavior Change

Several models of health behavior change provide insight into individuals’ decision making and motivation about changing health and lifestyle habits.

3 Broad Categories acc to Glanz and colleagues: Individual change Interpersonal change Community change3 Theories of interpersonal behavior are: Social cognitive Social support theory Patient provider communication

To change the system that maintains a habit one must:1. Identify and examine the linkages among decisions2. Measure and receive feedback about behaviors3. Propose and try out new activities to improve these habits4. Build these decisions and behaviors into everyday routines

As part of an interdisciplinary course in quality improvement, clinical teams:

5. Develop a therapeutic relationships with clientsover the computer network

6. Assess clients’ current health patterns regarding diet and exercise compliance with heart-healthy lifestyle guidelines

7. Coach clients to make self-improvements in health behaviors

8. Track and trend data related to diet and exercise behavior over the project period

Decision Support in Screening for Latent Health Conditions

The advent of a wide variety of new medical technologies has enabled the screening for the presence of latent diseases or health problems ranging from genetic testing for mutations for such diseases like BRCA-1/BRCA-2 for breast cancer susceptibility, evaluating metabolic markers such as prostate-specific antigen (PSA) antigen test for identifying potential for the presence of prostate cancer and amniocentesis which allows for the screening of fetuses for a variety of health conditions including generic diseases such as Huntington and Down syndromes

Screening test may have effects on a patients life that are far broader than just their state of health and carry a different set of side effects including the potential for individual and familial psycho-logic harm as well as for affecting a person’s ability to obtain insurance