Decision Quality Initiative
What is Decision Quality?
Two women, Linda and Beth, are diagnosed with early stage breast cancer. Both decide on mastectomy rather than the breast-conserving alternative, lumpectomy with radiation. Linda makes her decision about treatment the moment she’s given the biopsy results. She believes that a less aggressive treatment would lower her chances of survival. Her surgeon spends little time discussing the pros and cons of her treatment options.
After surgery, Linda is surprised by the length of time before she can lift and carry items or fully use her arm. She feels confused and angry when she learns from a friend that survival after mastectomy is the same as after breast-conserving surgery with radiation.
Beth comes to her decision after learning about the advantages, disadvantages, and survival statistics of both treatments. She views a decision aid video on early stage breast cancer and creates a list of questions for her surgeon. She spends some time pondering her priorities for treatment and realizes that as a mother of small children, avoiding repeat surgeries is very important to her, as is avoiding the many weeks of radiation therapy required for breast-conserving treatment. Beth is prepared for the recovery time required after surgery.
Unlike Linda, Beth feels comfortable with her decision and remains certain that the decision to have a mastectomy was a good one for her.
The Difference is a Quality Problem
Although both women chose the same treatment, the essence of their decisions and the process involved in decision making were entirely different. Linda’s decision was prompted by fear and misinformation, without consideration of her personal values and preferences. Beth’s decision reflected a thoughtful deliberation of the pros and cons of both treatment options, discussion with her care provider, and a careful weighing of her personal priorities.
The difference between these women’s experience is reflected in a discrepancy in “decision quality.”
Decision quality is defined as the extent to which treatment reflects the informed preferences of patients and is implemented. It describes the agreement between what a well-informed patient really wants and the treatment he or she actually gets. Decision quality is essential to providing efficient and patient-centered health care.
Measuring Decision Quality
Researcher Karen Sepucha and her colleagues at the Health Decision Research Unit at Massachusetts General Hospital (MGH) are studying the best ways to measure decision quality. They have developed a series of questionnaire-based instruments that assess several features of the decision-making process.
The decision quality instruments developed by the team at MGH include questions that:
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• Assess the patient’s knowledge about the treatment options;
• Elucidate the goals and concerns most salient to the patient; and
• Assess the nature of the interaction between patients and providers
For example, patients with early stage breast cancer complete a short worksheet version of the decision quality instrument before they meet with the surgeon. (Early Stage Breast Cancer Worksheet) The worksheet includes questions that test the patient’s knowledge about survival after mastectomy versus lumpectomy with radiation, assess the relative importance to the patient of avoiding radiation, and ascertain whether the patient has chosen mastectomy, lumpectomy with radiation, or is currently unsure about her treatment choice.
Sepucha and other researchers use decision quality instruments to determine the extent to which health decisions are made in concert with patients’ desires and preferences. They measure the “concordance,” or degree of agreement, between patients’ stated values and preferences and the treatment decisions they ultimately make. Low concordance reflects poor decision quality.
Dr. Sepucha’s team has documented many problems with the quality of health decisions in the United States and has also recorded the success of several health centers in helping patients make good quality decisions.
For more information about Dr. Sepucha’s recent findings, click here.
Bibliography
Sepucha K, Ozanne E, Silvia K, Partridge A, Mulley A. An approach to measuring the quality of breast cancer decisions. Patient Education and Counseling. 2007;65(2):261-9.
Collins ED, Moore C, Clay K, Kearing S, OConnor AM, Llewellyn-Thomas H, Barth R, Sepucha K. Can Women Make an Informed Decision for Mastectomy? Journal of Clinical Oncology. 2009;27(4):519-25.
Sepucha K, Ozanne E. How to define and measure concordance between patients’ preferences and medical treatments: A systematic review of approaches and recommendations for standardization. Patient Education and Counseling. 2009; Jun 29.
Sepucha K, Levin C, Uzogara E, Barry M, O’Connor A, Mulley A. Developing instruments to measure the quality of decisions: Early results for a set of symptom-driven decisions. Patient Education and Counseling. 2008;73:504-510.