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Strategies to Optimize Patient and Family Satisfaction and Decrease

Decisional Regret

David Sandberg, PhD

Arlene Baratz, MD Elizabeth Quint, MD Lesley Breech, MD

Anne-Marie Amies Oelschlager, 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.

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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

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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: 285–291

How do we measure decisional conflict?

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O’Connor AM. Decisional Conflict Scale 1993.

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 2014

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Kohler B et al. J Clin Endocrinol Metab. 2012

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%)

Why is this important for our patients and parents with DSD conditions?

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 2006

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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. 2014

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. 2014

Uses in Gynecology

� Contraception tools � Prolapse � Breast cancer �  Fibroids

Belkora et al. Patient Educ Couns. 2012 Brazell et al. Fem Pelvic Med Reconstr Surg 2014. French R et al. J Fam Plann Reprod Health Care 2014.

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Prenatal Genetic Testing �  Women were less likely to have invasive diagnostic

testing (5.9% vs 12.3%; odds ratio [OR], 0.45 [95% CI, 0.25-0.80])

�  More likely to forgo testing altogether (25.6% vs 20.4%; OR, 3.30 [95% CI, 1.43-7.64]

�  Higher knowledge scores (9.4 vs 8.6 on a 15-point scale; mean group difference, 0.82 [95% CI, 0.34-1.31])

�  More likely to correctly estimate the amniocentesis-related miscarriage risk (73.8% vs 59.0%; OR, 1.95 [95% CI, 1.39-2.75

�  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 2010

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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 2010.

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 2014

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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):195-204 �  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. 2014 �  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: 285–291 �  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. 2014 Apr;40(2):96-101

�  Graham ID, Logan J, Bennett CL et al. Physicians’ intentions and use of three patient decision aids. BMC Med Inform Decis Mak. 2007;7:20-30.

�  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: 789-805

�  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):577-88

�  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):1210-1217

References �  Legare F, Ratte S, Gravek K et al. Barriers and facilitators to implementing shared decision-

making in clinical practice; update of systematic review of health professionals’ perceptions. Patient Educ Couns. 2008; 73:526-35.

�  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):1558-63

�  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 2010 30: 444-452,

�  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. 2014

�  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):353-64