4J-3 A STAKEHOLDER-CENTERED APPROACH TO ELICITING PATIENT TREATMENT GOALS IN THE CONTEXT OF HIGH-STAKE CLINICAL DECISIONS

Tuesday, October 25, 2016: 4:00 PM
Bayshore Ballroom Salon D, Lobby Level (Westin Bayshore Vancouver)

Nananda F. Col, MD, MPH, MPP, FACP1, Andrew Solomon, MD2, Vicky Springmann, MSc3, Calvin Garbin, PhD4, Carolina Ionete, MD, PhD5, Lori Pbert, PhD5, Enrique Alvarez, MD, PhD6, Brenda Tierman, RN7, Ashli Hopson, BA8, Christen Kutz, PA, PhD9, Idanis Berrios Morales, MD5, Carolyn Griffin, RN5, Glenn Phillips, PhD10 and Long Ngo, PhD11, (1)Shared Decision Making Resources, Georgetown, ME, (2)Neurological Sciences, University of Vermont College of Medicine, Burlington, VT, (3)Tononto, ON, Canada, (4)Dept of Psychology, Univ of Nebraska, Lincoln, NE, (5)University of Massachusetts Memorial Medical Center, Worcester, MA, (6)Dept of Neurology, Univ. of Colorado, Aurora, CO, (7)Fayetteville, GA, (8)Shared Decision Making Resources, Buford, GA, (9)Colorado Springs Neurological Associates, Colorado Springs, CO, (10)Biogen, Cambridge, MA, (11)Beth Israel Deaconess Med Ctr, Boston, MA

Purpose:

   Patients facing a high-stakes clinical decision often confront a bewildering array of treatment options that may impact many facets of their lives. A good decision requires consideration of patients' goals and preferences and providers' scientific rationale for treatment. However, preference-assessment instruments typically focus on pre-selected clinical outcomes and preference attributes that may not be relevant to patients. We sought to develop a patient-centered approach to elicit treatment goals and to compare the treatment goals of patients with Multiple Sclerosis (MS) to MS healthcare providers.

Methods:

  To generate a comprehensive list of treatment goals, we conducted 6 structured focus groups using Nominal Group Technique among MS patients and MS healthcare providers. Groups were conducted in Georgia, Colorado, Massachusetts, and online. Each group of 5-9 participants responded to one question about their treatment goals. Responses were shared, consolidated, and ranked (top 9). Weights were assigned and scores summed to develop a prioritized list. Goals were consolidated across groups and the combined list was then presented to a larger sample (n=41) to rate and sort into categories using their own criteria (“How do you see these going together?”). A co-occurrence matrix was created based on how frequently items were sorted into the same category. Multidimensional Scaling was used to create an optimal geometric solution for the matrix (“cognitive map”) and Hierarchical Cluster Analysis and clinical judgement via patient and provider consultation was used to identify and label clusters of related attributes.

Results:

   34 unique patient-generated treatment goals were included in the combined list. Ten clusters were identified and prioritized (highest to lowest): Brain Health, Disability Concerns, Avoiding Flare-ups/Progression, Caring/Informed Medical Team, Quality-of-Life, Safe Treatments, Symptom Management, Financial Concerns, Lifestyle & Daily Living, and Avoiding Care Facilities. Goals generated by patients were primarily focused on managing symptoms and limiting loss of function, while providers focused on slowing disease progression. The ratings and groupings of items also differed between the groups.

 

Conclusions:

   Unlike other preference assessment approaches that focus on assigning weights to investigator-identified outcomes and attributes, this patient-centered approach prioritizes and maps outcomes and attributes elicited by patients, minimizing investigator bias and maximizing their relevance to patients. Cognitive mapping can be used to identify patient goals and gaps among priorities considered by patients and their providers.

 

See more of: ORAL ABSTRACTS: SHARED DECISION MAKING AND PATIENT CENTERED DECISION SUPPORT

See more of: 38th Annual North American Meeting of the Society for Medical Decision Making