The Importance of Shared Decision-making in Myeloma Treatment by International Myeloma Foundation

Shared Decision Making

Teresa Miceli, RN, BSN, OCN

International Myeloma Foundation InfoLine Advisor & Nurse Leadership Board; Mayo Clinic-Rochester

Shared Decision Making: Be An Active

Member

Of Your Health Care Team

Teresa Miceli, RN BSN OCN

International Myeloma Foundation - InfoLine Advisor, NLB Member, Support Group Leader (MMSS, Smolder Bolder)

Mayo Clinic – Myeloma Nurse Navigator

National Cancer Institute - Myeloma Patient Advocate

Goals

• Review Share Decision Making (SDM) Concepts

• Identify Influencing Factors To Treatment Decision Making

• Discuss Strategies To Enhance Patient Empowerment & Promote Shared Decision Making

Individual Beliefs & Preferences

Transplant

Eligible Patients

Individual Care Partner

Family

Initial Therapy

A Person With `

Treating Myeloma

Transplant (ASCT) Maintenance

Transplant

Ineligible Patients

Everyone

Social Network & Obligations

Treatment of Relapsed disease

Consolidation / Maintenance Continued therapy

Myeloma Symptoms & Treatment

Options

Supportive Care

Employme nt & Finances

the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality

SDM: Patient-Centered Care

“The aim of shared decisionmaking is to ensure that:

- Patients understand their options and the pros and cons of those options.

- Patient's goals and treatment preferences are used to guide decisions.”

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/c ommunication/strategy6i-shared-decisionmaking.html#6i1

Steps in Shared Decision-Making

 Identify that a decision is needed: The HCP informs the patient that a decision is to be made and that the patient's opinion is important (Choice talk).

 Understand the options:

The HCP explains the evidence-based options and their pros and cons. The patient expresses their preferences, and the HCP supports the patient in decision-making (Option talk).  Come to a decision:

The HCP and patient discuss the patient's wish to take part in the decision making and incorporate the patient's values and preferences into the decision (Decision talk

Follow-up: Review and evaluate the decision, adjust as needed

Advantages to Partaking in SDM

Patients, regardless of age, want to be a part of treatment decision-making

 Requires staying informed

 Reduces uncertainty and alleviates concerns

 Decisions reflect personal and family values

 Promotes patient and care partner engagement and sense of empowerment

 Positive impact on QOL and continuation on therapy

“The 'efficacy' of treatment means different things to different patients, and treatment decision-making in the context of personalized medicine must be guided by an individual's composite definition of what constitutes the best treatment choice.” Terpos, et al. Terpos, et al. 2021

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/ 6-strategies-for-improving/communication/strategy6i-shared-decision making.html#6i1

Influencing Factors to Treatment DecisionMaking

• Disease-derived

• Time: Stage, risk stratification, Urgent intervention needed vs time to consider options

• Treatment: Availability/access, effectiveness, toxicity, current research

Choon-Quinones, Mimi, Hose D, Kaló Z, Zelei T, Harousseau JL, Durie B, Keown P, Barnett M, Jakab I. Patient and Caregiver Experience Decision Factors in Treatment Decision Making: Results of a Systematic Literature Review of Multiple Myeloma Decision Aids. Value Health. 2023 Jan;26(1):39-49. doi: 10.1016/j.jval.2022.04.003. Epub 2022 May 22. PMID: 35613958.

 Patient-derived

 Provider-derived

 Time limitations

 Support for patient involvement

 Provider bias and preference

 Understanding complex treatment options

 Physical and emotional wellness

 Comfort in speaking up “Doctor knows best”

 Financial, Cultural and Religious factors

 Care partner & social network, transportation

https://www.valueinhealthjournal.com/action/showFullTableHTML?isHtml=true&tableId=tbl4&pii=S1098-3015 %2822%2900198-X

https://www.ahrq.gov/sites/def ault/files/wysiwyg/cahps/qualit y-improvement/improvement-g uide/6-strategies-for-improving /communication/cahps-strateg y-section-6-i.pdf

Strategies for Patient Empowerment

 Consider your priorities

 Consider your goals/values/preferences

 Include your care partner/network in the discussion

 Be a part of the conversation, create a dialog

 Ask questions & Express your goals/values/preferences

 Ask for time to consider options, if needed

 Arrive at a treatment decision together

 Arrange follow up to review and adjust the plan, if needed

Strategies for Patient Empowerment

Know the members of your care teamUnderstand their different roles

 Myeloma specialist and General Heme/Onc

 Primary care: for health screening, general check ups, vaccinations

 Sub-specialists: specialty needs

 Keep a contact list of your providers

Care Provider (PCP)

Subspecialists

Health Staff

Allied

Strategies: Prepare For Medical Visits

Prepare

 Medications: Bring a current list of prescribed and over-thecounter

 Questions: Prioritize questions & concerns including financial issues

 Paperwork needing medical signature (ex FMLA, prior authorizations)

Inform

 Updates: Medical or life changes since your last visit

 Symptoms: How have they changed (improved, worsened, stable)? Keep a symptom diary. Bring it along

 Communicate effectively so your health care team can help

Follow Up

 “Next Steps”: Future appointments, medication changes, plan of care. Ask for the information in writing or on your patient portal

Include a care partner, especially for pivotal appointments

Consider Telemedicine

Strategies: Prepare For Tele-Med Visits

Check with your healthcare team –

 Is telemedicine an option?

 What is the process and what technology is needed?

 Are labs needed in advance? Do you need an order?

Preparation is similar for “in-person” appointment PLUS:

 Location: quiet, well-lit location with strong Wi-Fi is best

 Yourself: Do you need to show a body part - wear accessible clothing

 Vital signs (blood pressure, temp, heart rate, weight) selfserve blood pressure cuff is available at many pharmacies and for purchase

Include a care partner, especially for pivotal appointments

Create a Care Network

Myeloma causes the highest burden of symptoms, most commonly effecting people of older age with other medical issues. Care partner support is valuable in SDM

 Care partners assist in many ways

 Attending medical appointments, being present to learn and discuss possible treatment options and alert the medical team of side effects to treatment

 Some treatment options available only if care partner support exists

 Care partners can be one person or a rotation of many people

 Building a partnership is based in good communication

 Finding the balance:

- helping the patient with needed activities while maintaining a sense of independence

- allowing the care partner to have time for good self-care

Care Partner Tip Card https://www.myeloma.org/resource-library/tip-cardcare-partners

Terpos, et al. 2021; Soong, et al., 2023

Credit: https://www.mmtoldtrue.com/community/care-partner-corner

Key

Take-Aways - Think About It ….

Over the next two days:

 Evaluate where you are at in the process (What decisions need to be made?)

 Absorb the information being presented (What are the options?)

 Consider how the information impacts you and your family (What are your preferences?)

 Create questions that will lead to better understanding (What more do I need to know before making a decision?)

 Become an active member of your health care team

Share Decision Making

Resource List

Bylund CL, Eggly S, LeBlanc TW, Kurtin S, Gandee M, Medhekar R, Fu A, Khurana M, Delaney K, Divita A, McNamara M, Baile WF. Survey of patients and physicians on shared decision-making in treatment selection in relapsed/refractory multiple myeloma. Transl Behav Med. 2023 Apr 15;13(4):255-267. doi: 10.1093/tbm/ibac099. PMID: 36688466.

Chari A, Romanus D, DasMahapatra P, Hoole M, Lowe M, Curran C, Campbell S, Bell JA. Patient-Reported Factors in Treatment Satisfaction in Patients with Relapsed/Refractory Multiple Myeloma (RRMM). Oncologist. 2019 Nov;24(11):1479-1487. doi: 10.1634/theoncologist.2018-0724. Epub 2019 Aug 1. PMID: 31371520; PMCID: PMC6853123.

Rifkin RM, Bell JA, DasMahapatra P, Hoole M, Lowe M, Curran C, Campbell S, Hou P, Romanus D. Treatment Satisfaction and Burden of Illness in Patients with Newly Diagnosed Multiple Myeloma. Pharmacoecon Open. 2020 Sep;4(3):473-483. doi: 10.1007/s41669-019-00184-9. PMID: 31605300; PMCID: PMC7426337.

3718 Cytokine Release Syndrome: The Patient, Caregiver and Healthcare Professional Experience. Janelle Soong, Giuseppe De Carlo, Naziah Lasi-Tejani, Sumanjit K. Sethi, Natacha Bolaños, Martine Elias, Yelak Biru, Solène Clavreul, G. Scott Chandler, Klaus Finzler, Yann Nouet, Antonio Giuseppe Del Santo. Blood (2023) 142 (Supplement 1): 3718

Terpos E, Mikhael J, Hajek R, Chari A, Zweegman S, Lee HC, Mateos MV, Larocca A, Ramasamy K, Kaiser M, Cook G, Weisel KC, Costello CL, Elliott J, Palumbo A, Usmani SZ. Management of patients with multiple myeloma beyond the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality of life. Blood Cancer J. 2021 Feb 18;11(2):40. doi: 10.1038/s41408-021-00432-4. PMID: 33602913; PMCID: PMC7891472.

https://www.ahrq.gov/health-literacy/professional-training/shared-decision/index.html

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html #6i1