Disclosure 3/31/2015. Strategies to Optimize Patient and Family Satisfaction and Decrease Decisional Regret. Anne-Marie Amies Oelschlager, MD

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1 Strategies to Optimize Patient and Family Satisfaction and Decrease Decisional Regret David Sandberg, PhD Anne-Marie Amies Oelschlager, MD Arlene Baratz, MD Elizabeth Quint, MD Lesley Breech, MD Disclosure Dr. Sandberg was awarded a contract from the Patient Centered Outcomes Research Institute (PCORI 1360). This multisite project that involves the input of provider specialists from multiple disciplines, representatives of DSD patient support/advocacy organizations and parents of affected children, will deliver a web-based decision support tool. 1

2 Objectives Understand the background, process, and importance of shared decision making. Why is it important to patients? Why is important to providers? Learn about decisional conflict, decisional regret, and how decision support tools affect treatment choice and satisfaction. Learn how to use a new decision support tool for DSD conditions. Anticipate and understand the benefits and challenges to implementation of shared decision making. Definitions Shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient s values and preferences. It is a subset of informed decision making Definitions Decisional Regret: A negative conscious and emotional reaction to personal past acts, decisions, or behaviors Decisional conflict: Personal uncertainty of which course of action to take when options involve risk, regret, or challenge to life values 2

3 Why is this so important? Decisional regret impacts our patients Decisional regret impacts their parents Decisional regret impacts us Regret and Consequences for Providers Most common scenarios for regret: Perceived lack of control in patient care loss of therapeutic adherence patient s condition worsening unexpectedly Committed errors Sense that patient s dignity was not respected. More severe consequences for the patient. Regret may lead to 2 types of consequences Changes in clinical practices Negative impact on health care professionals own health and quality of life. sleep disorders attention deficits Delphine S et al. Med Care 2013;51: How do we measure decisional conflict? 3

4 O Connor AM. Decisional Conflict Scale Decision Regret Scale Decisional Regret Distal hypospadias repair Decisional regret is associated with Postoperative complications (OR 14.7) Parental desire to avoid circumcision (OR 7.4) Preoperative decisional conflict (OR 1.06) Lorenzo et al. J Urol

5 Why is this important for our patients and parents with DSD conditions? For many 46 XY,DSD partially androgenized females after feminization surgery, dissatisfaction levels are high With function of the surgical result (47.1%) With clitoral arousal (47.4%) With overall sex life (37.5%) With desire (70.6%), With dyspareunia (56.3%) Kohler B et al. J Clin Endocrinol Metab Why are decision support tools helpful with DSD conditions? Uncertainty and multiple options Best time to intervene is not clear Optimal surgical approach may not be clear Gender identity may not be clear Long term outcomes are uncertain Uncertainty about optimal timing Uncertainty about long term sexual function Tumor risk is unclear Family values differ The child may not be able to give assent or informed consent There is limited time in clinic What are Patient Decision Aids? Patient decision aids are tools designed to help people participate in decision making about health care options. They provide evidence-based information on the underlying condition, treatment options, and benefits, harms, and uncertainties. They help patients clarify and communicate the personal values. They allow patients and families time to review the surgical intervention as well as other more conservative options Elwyn G et al. BMJ

6 Why are the benefits? Greater knowledge Lower decisional conflict related to feeling uninformed Less decisional conflict related to feeling unclear about personal values Stimulate people to take a more active role in decision making Reduced proportion of people who remained undecided Positive effect on patient-practitioner communication Reduced the number of people of choosing major elective invasive surgery in favor of more conservative options Improve accurate risk perceptions when probabilities are included in decision aids Stacey D. Cochrane Review What are the unknowns? Decision aids were no better for: Satisfaction with decision making Anxiety Health outcomes Inconclusive: May increase consultation length May not impact continuation of treatment Resource use Stacey D. Cochrane Review Uses in Gynecology Contraception tools Prolapse Breast cancer Fibroids Belkora et al. Patient Educ Couns Brazell et al. Fem Pelvic Med Reconstr Surg French R et al. J Fam Plann Reprod Health Care

7 Prenatal Genetic Testing Women were less likely to have invasive diagnostic testing (5.9% vs 12.3%; odds ratio [OR], 0.45 [95% CI, ]) More likely to forgo testing altogether (25.6% vs 20.4%; OR, 3.30 [95% CI, ] Higher knowledge scores (9.4 vs 8.6 on a 15-point scale; mean group difference, 0.82 [95% CI, ]) More likely to correctly estimate the amniocentesisrelated miscarriage risk (73.8% vs 59.0%; OR, 1.95 [95% CI, Significant differences did not emerge in decisional conflict or regret. Kupperman M et al. JAMA 2014 Fibroids Mailed DVD and brochure about fibroid treatment to 300 women Intervention group reported Higher knowledge scores Knew more treatment options Felt more satisfied with their decision Reported more consistency with their values Solberg LI, et al. Med Decis Making

8 How do we do this? Set the stage and develop and appropriate team Establish preferences for information and roles in decision making Perceive and address emotions Define concerns and values Identify options and present evidence Share responsibility for making a decision Karkazis K, Tamar Mattis A, Kon A. J Pediatr Endocrinol Metab Web Based Decision Support Tool Facilitators and Barriers to Implementation Facilitators: Financial incentives Physician buy-in crucial Barriers: Competing demands and time pressures were persistent barriers The effect of decision aids on length of consultation varied from 8 minutes shorter to 23 minutes longer Adjusting the tool for low literacy Uy V et al. Health Expect 2014 Stacy et al. Cochrane Review

9 Questions? References Belkora JK, Volz S, Teng AE, Moore DH, Loth MK, Sepucha KR Impact of decision aids in a sustained implementation at a breast care center. Patient Educ Couns. 2012;86(2): Brazell H, O Sullivan D, Forrest A, Greene J. Effect of a Decision Aid on Decision Making for the Treatment of Pelvic Organ Prolapse. Female Pelvic Med Reconstr Surg Brehaut JC, O Connor AM, Wood TJ et al. Validation of a decision regret scale. Med Decis Making 2003;23:281. Elwyn G, O'Connor A, Stacey D, Volk R et al. )Developing a quality criteria framework for. patient decision aids: online international Delphi consensus process'. BMJ 2006;333:417 Delphine S et al. Validation of a 10-item Care-related Regret Intensity Scale (RIS-10) for Health Care Professionals. Med Care 2013;51: French R, Cowan F, Wellings K, Dowie J. The development of a multi-criteria decision analysis aid to help with contraceptive choices: My Contraception Tool. J Fam Plann Reprod Health Care Apr;40(2): Graham ID, Logan J, Bennett CL et al. Physicians intentions and use of three patient decision aids. BMC Med Inform Decis Mak. 2007;7: Karkazis K, Tamar-Mattis A, Kon A. Genital surgery for disorders of sex development: implementing a shared decision making approach. J Pediatr Endocrinol Metab 2010; 23: Kohler B, Kleinemeier E, Lux A, Hjort O, Gruters A, Thyen U. Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: results from the German clinical evaluation study. J Clinic Endocrinol Metab 2012 Feb;97(2): Kuppermann M, Pena S, Bishop J, Nakagawa S, Gregorich S, Sit A, Vargas J, Caughey A, Sykes S, Pierce L, Norton, M. Effect of Enhanced Information, Values Clarification, and Removal of Financial Barriers on Use of Prenatal Genetic Testing: A Randomized Clinical Trial. JAMA. 2014;312(12): References Legare F, Ratte S, Gravek K et al. Barriers and facilitators to implementing shared decisionmaking in clinical practice; update of systematic review of health professionals perceptions. Patient Educ Couns. 2008; 73: Lorenzo AJ, Braga L, Zlateska B et al. Analysis of decisional conflict among parents who consent to hypospadias repair: single institution prospective study of 100 couples. J Urol 2012; 188:571. Lorenzo AJ et al. Decisional regret after distal hypospadias repair: single institution prospective analysis of factors associated with subsequent parental remorse or distress. J Urol. 2014;191(5 Suppl): O Connor AM. User Manual-Decision Regret Scale. Ottawa: Ottawa Hospital Research Institute 1996; pp1-3. Solberg LI, Asche SE, Sepucha K, Thygeson NM, Madden JE, Morrissey L, Kraemer KK, Anderson LH Informed Choice Assistance for Women Making Uterine Fibroid Treatment Decisions: A Practical Clinical Trial Med Decis Making July/August : , Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn- Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JHCDecision aids for people facing health treatment or screening Decisions. Cochrane Review Uy V, May SG, Tietbohl C, Frosch DL. Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community-based primary care settings. Health Expect 2014 Jun;17(3):