Background: Patients who engage in decision-making are more likely to experience confidence and satisfaction in treatment decisions and trust in clinicians. Low health literacy can impact decision-making and is associated with greater decisional conflict and diminished understanding of key treatment information. The Association of Community Cancer Centers (ACCC) conducted a survey to explore multidisciplinary team attitudes and practices around shared decision-making (SDM) and health literacy. We also explored the critical role navigators and social workers play in supporting patients with decisions and attending to health literacy barriers.
Objective: Understand stakeholders’ attitudes, challenges, and effective practices for engaging patients with cancer through SDM. Identify resources, education, and tools needed for oncology nurse navigators, social workers, patient navigators, and financial navigators to support patients and caregivers through SDM.
Methods: ACCC convened a steering committee of multidisciplinary specialists, professional associations, and advocacy representatives to guide this research. The survey included 26 mostly closed-ended questions and was open to multidisciplinary cancer programs from 10/29/19 to 2/20/20. Of 443 survey respondents, 141 indicated they serve in a navigation role (62% social workers, 20% oncology nurse navigators, 11% financial counselors/navigators, 8% patient navigators). Exploratory analysis was performed on this data set of 141 respondents.
Results: Ninety-nine percent of the 141 respondents reported that their cancer programs ask patients to discuss quality-of-life priorities, and 88% of respondents either sometimes or always engage patients in conversations about treatment decision-making. Respondents stated that additional nurse navigator/social worker follow-up is a common strategy to support patients with low health literacy (78%), patients with metastatic disease (69%), and patients older than 65 years (62%). The most frequently cited perceived barriers to engaging in SDM were not having adequate training (46%) or being unfamiliar with the core concepts of SDM (37%), as well as patients feeling overwhelmed (51%) and having limited health literacy (46%). Most respondents have access to training in cultural sensitivity (66%) and having difficult conversations (60%), but only 17% have access to basic training about SDM. Only 10% indicated that lack of time was a barrier to engaging in SDM. Fewer than half of nurse navigator respondents (45%, n = 23) reported using patient decision aids to support SDM.
Conclusion: SDM is commonly accepted as essential to patient engagement, but clarity in terminology and prioritizing formal integration of SDM into practice is limited. Navigation is an important component of successful implementation of SDM processes. Strategies to improve integration of SDM into practice could include: (1) educational initiatives and tools to overcome barriers to SDM, including SDM training and patient decision aids; (2) initiatives to address health literacy as it relates to patient and caregiver engagement in decision-making; (3) psychosocial support for patients whose emotional upset is a barrier to SDM; and (4) healthcare policies that encourage and incentivize care team members to engage in SDM. Future analyses will require concurrent assessment of patient, caregiver, healthcare professional, and administrator perspectives.
Note: Funding for this project was provided by Pfizer Oncology.