Multisite Quality Improvement Initiative to Identify and Address Racial Disparities and Deficiencies in Delivering Equitable, Patient-Centered Care for Multiple Myeloma—Exploring the Differences between Academic and Community Oncology Centers
Abstract
:1. Introduction
2. Materials and Methods
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Baseline Chart Audits | |||
Academic Patients (n = 200) | Community Patients (n = 200) | p-Value 1 | |
African American/Black | 105 (53%) | 32 (16%) | <0.001 |
Non-African American | 95 (47%) | 133 (67%) | |
Race Not Documented | 0 (0%) | 35 (17%) | |
Mean age | 70 years | 71 years | 0.285 |
Male sex | 68% | 46% | 0.001 |
Patient and Provider Surveys | |||
Academic Patients (n = 39) | Community Patients (n = 100) | ||
Mean age | 63 years | 62 years | 0.676 |
African American/Black | 67% | 47% | 0.001 |
Hispanic/Latino | 18% | 3% | |
Asian/Pacific Islander | 10% | 0% | |
Native American/Alaska Native | 5% | 0% | |
White | 0% | 50% | |
Mean years attending clinic for MM care | 3.5 years | 5.5 years | 0.032 |
Academic Providers (n = 31) | Community Providers (n = 59) | ||
Hematologist/Oncologist | 65% | 29% | 0.011 |
Primary Care Physician/Other Physician | 0% | 14% | |
NP/PA | 12% | 22% | |
Nurse | 23% | 32% | |
Other | 0% | 3% | |
African American/Black | 45% | 8% | 0.001 |
Caucasian/White | 29% | 75% | |
Hispanic/Latino | 16% | 0% | |
Asian/Pacific Islander | 10% | 17% | |
Mean patients with MM seen per month | 9 patients | 49 patients | 0.001 |
Mean years caring for patients with MM | 17 years | 9 years | 0.001 |
Feedback-Focused Educational Sessions | |||
Academic Providers (n = 58) | Community Providers (n = 59) | ||
Hematologist/Oncologist | 84% | 29% | 0.001 |
NP/PA | 5% | 22% | |
Nurse/Patient navigator/Case manager | 10% | 31% | |
Primary Care Physician | 0% | 14% | |
Other | 0% | 5% | |
Learners’ self-reported monthly caseload of patients with MM (mean) | 514 patients | 1699 patients | 0.001 |
Academic Patients (n = 200) | Community Patients (n = 200) | p-Value 2 | |
---|---|---|---|
Disease Characteristics | |||
Disease Stage | 48% | 29% | <0.001 |
Stage 1 | 24% | 8% | <0.001 |
Stage 2 | 20% | 8% | <0.001 |
Stage 3 | 4% | 14% | <0.001 |
Stage Not Documented | 52% | 71% | <0.001 |
Cytogenetics | 40% | 8% | <0.001 |
t(4;14) | 6% | 4% | 0.359 |
Imaging | 97% | 79% | <0.001 |
Patient-Centered Care Practices | |||
Referrals/ongoing management of comorbidities | 20% | 5% | <0.001 |
Response evaluation | 85% | 84% | 0.777 |
Provision of patient education | 24% | 22% | 0.634 |
Involvement of interprofessional team in diagnostic and prognostic tests | 24% | 47% | <0.001 |
Advance care planning documentation | 25% | 70% | <0.001 |
Assessment of side effects | 25% | 27% | 0.648 |
Assessment of adherence | 30% | 37% | 0.138 |
Assessment of patient-reported function | 38% | 49% | 0.026 |
Assessment of patient-reported quality of life | 39% | 45% | 0.224 |
Assessment of alcohol | 68% | 91% | <0.001 |
Shared Decision-Making Practices | |||
Checking for the patient/caregiver understanding of treatment options | 24% | 26% | 0.644 |
Exploring patient/caregiver expectations for treatment outcomes | 27% | 26% | 0.821 |
Ask patient or caregiver about treatment goals | 28% | 30% | 0.659 |
Exploring patient/caregiver concerns and fears | 31% | 29% | 0.663 |
Explaining pros and cons of treatment options | 34% | 41% | 0.148 |
Providing treatment options | 35% | 37% | 0.677 |
Providing opportunities for patient or caregiver to ask questions | 52% | 35% | <0.001 |
Academic | Community | |||||
---|---|---|---|---|---|---|
Providers (n = 31) | Patients (n = 39) | p-value 3 | Providers (n = 59) | Patients (n = 100) | p-Value 3 | |
Challenges for Patients with MM | ||||||
Patient prompt: What is the biggest challenge you have faced in your MM care? Provider prompt: What is the biggest challenge your patients have faced in their MM care? | ||||||
Feeling confident in the treatment plan | 22% | 10% | 0.196 * | 18% | 32% | 0.067 |
Choosing whether to have/worry about complications of SCT | 11% | 0% | 0.082 * | 16% | 7% | 0.095 |
Lack of reliable transportation to and from care center | 19% | 20% | 0.920 | 5% | 10% | 0.375 * |
Worry about working or meeting responsibilities at home | 22% | 20% | 0.841 | 18% | 18% | 0.920 |
Difficulty communicating with care team about concerns | 15% | 25% | 0.335 | 5% | 5% | >0.999 |
Worry about not having family/caregivers who can help | 4% | 18% | 0.069 * | 5% | 14% | 0.079 |
Worry about the cost of treatment/financial concerns | 7% | 7% | >0.999 | 32% | 9% | <0.001 |
Goals of Treatment | ||||||
Patient prompt: What are your top 2 goals for MM treatment? Provider prompt: What do you believe are your patients’ top 2 goals for MM treatment? | ||||||
Controlling symptoms | 26% | 49% | 0.050 | 34% | 24% | 0.177 |
Improving quality of life | 52% | 49% | 0.807 | 59% | 37% | 0.006 |
Surviving as long as possible | 56% | 33% | 0.071 | 63% | 47% | 0.055 |
Preventing progression or recurrence | 22% | 18% | 0.623 | 25% | 43% | 0.026 |
Maintaining independence in daily activities | 33% | 15% | 0.095 | 16% | 16% | 0.888 |
Staying out of the emergency room/hospital | 11% | 15% | 0.721 * | 4% | 12% | 0.032 |
Avoiding the need for a stem cell transplant | 0% | 5% | 0.499 * | 0% | 3% | 0.295 * |
Treatment Decision-Making | ||||||
Patient prompt: Which of the following factors are the most important for your treatment-decision making? Provider prompt: Which of the following factors are the most important for your patients’ treatment decision-making? | ||||||
How well it will work against my/their cancer | 56% | 39% | 0.171 | 50% | 57% | 0.450 |
Effects on quality of life | 56% | 44% | 0.351 | 54% | 45% | 0.260 |
Risks/complications/side effects associated with the treatment | 37% | 46% | 0.532 | 57% | 29% | <0.001 |
Cost of treatment | 19% | 26% | 0.532 | 21% | 18% | 0.718 |
Advice from loved ones | 19% | 31% | 0.277 | 0% | 13% | 0.005 * |
Advice/education from treatment team members | 7% | 13% | 0.452 * | 11% | 22% | 0.110 |
Clinical Trial Experience | ||||||
Patient prompt: Please describe your experience with clinical trials for MM (select all that apply). Provider prompt: Please rate how often you and your team do the following. | ||||||
Patient prompt: My doctor has asked about my interest in clinical trials Provider prompt: Discuss the possibility of clinical trial enrollment | 93% | 15% | <0.001 | 88% | 21% | <0.001 |
Patient prompt: My doctor has referred me to a clinical trial Provider prompt: Refer patients for clinical trial enrollment | 89% | 15% | <0.001 | 87% | 17% | <0.001 |
Patient prompt: I enrolled in a clinical trial | -- | 15% | -- | -- | 15% | -- |
Patient prompt: No experience with clinical trials | -- | 59% | -- | -- | 47% | -- |
Topics of Discussion | ||||||
Patient prompt: Please describe whether and how much your MM care team discussed the following topics with you. Provider prompt: Please rate how often you and your team discuss the following with your patients. | ||||||
Long-term side effects of cancer treatment for MM | 85% | 77% | 0.474 | 96% | 83% | 0.011 |
The need for regular follow-up care and monitoring after completing treatment for MM | 85% | 67% | 0.102 | 79% | 83% | 0.597 |
The pros and cons of different treatment options for MM | 81% | 65% | 0.128 | 93% | 88% | 0.290 |
Patient’s goals and preference for treatment | 81% | 70% | 0.277 | 100% | 84% | 0.001 |
Barriers to Care Access | ||||||
Patient prompt: Thinking about people like yourself, how much of a problem are these issues? Provider prompt: Please rate the degree of each problem (if present) for African American/Black patients relative to other patients. | ||||||
Having enough MM doctors or treatment centers near where patients live | ||||||
Problem (any degree) | 56% | 34% | 0.071 | 49% | 61% | 0.145 |
Major problem | 7% | 13% | 0.452 * | 15% | 42% | <0.001 |
Minor problem | 49% | 21% | 0.014 | 34% | 19% | 0.035 |
Not a problem | 11% | 10% | >0.999 | 34% | 17% | 0.015 |
Don’t know | 33% | 56% | 0.044 | 18% | 23% | 0.517 |
Having difficulty getting the best care because of their race/ethnic background | ||||||
Problem (any degree) | 63% | 30% | 0.005 | 44% | 40% | 0.617 |
Major problem | 30% | 10% | 0.277 | 13% | 20% | 0.303 |
Minor problem | 33% | 20% | 0.264 | 21% | 20% | >0.999 |
Not a problem | 15% | 15% | >0.999 | 47% | 29% | 0.019 |
Don’t know | 22% | 55% | 0.004 | 19% | 32% | 0.067 |
Being able to afford the cost of health insurance and needed medical care | ||||||
Problem (any degree) | 86% | 12% | <0.001 | 75% | 75% | >0.999 |
Major problem | 41% | 5% | <0.001 | 31% | 44% | 0.092 |
Minor problem | 45% | 7% | <0.001 | 44% | 31% | 0.097 |
Not a problem | 7% | 10% | 0.687 * | 7% | 12% | 0.290 |
Don’t know | 7% | 78% | <0.001 | 19% | 14% | 0.439 |
Community Providers (n = 59) | Black/Latinx Patients (n = 50) | White Patients (n = 50) | |
---|---|---|---|
Goals of Treatment | |||
Patient prompt: What are your top 2 goals for MM treatment? Provider prompt: What do you believe are your patients’ top 2 goals for MM treatment? | |||
Controlling symptoms | 34% | 26% | 22% |
Improving quality of life | 59% | 46% | 28% |
Surviving as long as possible | 63% | 38% | 56% |
Preventing progression or recurrence | 25% | 32% | 54% |
Maintaining independence in daily activities | 16% | 18% | 14% |
Staying out of the emergency room/hospital | 4% | 16% | 8% |
Avoiding the need for a stem cell transplant | 0% | 6% | 4% |
Treatment Decision-Making | |||
Patient prompt: Which of the following factors are the most important for your treatment decision-making? Provider prompt: Which of the following factors are the most important for your patients’ treatment decision-making? | |||
How well it will work against my/their cancer | 50% | 42% | 56% |
Effects on quality of life | 54% | 60% | 42% |
Risks/complications/side effects associated with the treatment | 57% | 36% | 30% |
Cost of treatment | 21% | 20% | 16% |
Advice from loved ones | 0% | 22% | 8% |
Advice/education from treatment team members | 11% | 10% | 24% |
Shared Decision-Making (SDM) | |||
Patient prompt: What keeps you from being more involved in treatment decision-making? | |||
I trust my care team to make the best decisions for me | -- | 64% | 30% |
I am too overwhelmed/worried to make a decision | -- | 28% | 8% |
I do not speak the same first language as my treating physician/treatment team members | -- | 18% | 10% |
I don’t know a lot about medicine or health, so I don’t really understand what my care team is telling me or I don’t know what to ask | -- | 14% | 12% |
My care team never asked what is important to me or what my goals of treatment are | -- | 14% | 8% |
I do not feel that my team values my opinions/listens to my concerns for my care | -- | 2% | 6% |
I feel that I am completely involved in my treatment decision making | -- | 14% | 54% |
Areas of Improvement | |||
Patient prompt: Which one aspect of your care do you think your MM care team could most improve? | |||
Education about MM and treatment options | -- | 34% | 16% |
Better provision of a translator/educational materials provided in my first language | -- | 26% | 4% |
Discussion about realistic treatment expectations and prognosis | -- | 28% | 24% |
Empathy throughout the emotional journey of managing my MM | -- | 32% | 13% |
Counseling to help me cope with my diagnosis and treatment | -- | 28% | 16% |
Insurance/financial counseling | -- | 14% | 18% |
Audit Feedback Sessions | ||||
---|---|---|---|---|
Pre-Activity | Post-Activity | |||
Academic Providers (n = 59) | Community Providers (n = 58) | Academic Providers (n = 41) | Community Providers (n = 49) | |
Pre-Activity: What is the biggest challenge to equitable MM care in your system? Post-Activity: Following this program, which challenge to equitable MM care do you intend to address with your team? | ||||
Engaging patients in SDM | 22% | 17% | 29% | 38% |
Individualizing treatment decision-making based on patient- and disease-related factors | 16% | 25% | 37% | 18% |
Providing adequate patient education about treatment options and potential side effects | 16% | 17% | 6% | 28% |
Integrating distress screening into patient monitoring | 5% | 12% | 4% | 13% |
Ensuring equitable access to novel therapies for all patients | 36% | 29% | 24% | 3% |
Other | 5% | 0% | 0% | 0% |
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Mikhael, J.R.; Sullivan, S.L.; Carter, J.D.; Heggen, C.L.; Gurska, L.M. Multisite Quality Improvement Initiative to Identify and Address Racial Disparities and Deficiencies in Delivering Equitable, Patient-Centered Care for Multiple Myeloma—Exploring the Differences between Academic and Community Oncology Centers. Curr. Oncol. 2023, 30, 1598-1613. https://doi.org/10.3390/curroncol30020123
Mikhael JR, Sullivan SL, Carter JD, Heggen CL, Gurska LM. Multisite Quality Improvement Initiative to Identify and Address Racial Disparities and Deficiencies in Delivering Equitable, Patient-Centered Care for Multiple Myeloma—Exploring the Differences between Academic and Community Oncology Centers. Current Oncology. 2023; 30(2):1598-1613. https://doi.org/10.3390/curroncol30020123
Chicago/Turabian StyleMikhael, Joseph R., Shelby L. Sullivan, Jeffrey D. Carter, Cherilyn L. Heggen, and Lindsay M. Gurska. 2023. "Multisite Quality Improvement Initiative to Identify and Address Racial Disparities and Deficiencies in Delivering Equitable, Patient-Centered Care for Multiple Myeloma—Exploring the Differences between Academic and Community Oncology Centers" Current Oncology 30, no. 2: 1598-1613. https://doi.org/10.3390/curroncol30020123
APA StyleMikhael, J. R., Sullivan, S. L., Carter, J. D., Heggen, C. L., & Gurska, L. M. (2023). Multisite Quality Improvement Initiative to Identify and Address Racial Disparities and Deficiencies in Delivering Equitable, Patient-Centered Care for Multiple Myeloma—Exploring the Differences between Academic and Community Oncology Centers. Current Oncology, 30(2), 1598-1613. https://doi.org/10.3390/curroncol30020123