LBA Category III: Patient Advocacy/Patient Empowerment

October 2022 Vol 13, No 10 —November 8, 2022
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C1 Impact of a HealthTree Myeloma Coach on Quality of Life for Multiple Myeloma Patients: A Pilot Study


Rozalynn W. Hite, OTR/L; Marsha G. Calloway-Campbell, JD; Christian S. Cheung; Jennifer M. Ahlstrom, BA; Jay R. Hydren, PhD; Nathan W. Sweeney, PhD

HealthTree Foundation, Lehi, UT

Background: The quality of life (QOL) is greatly altered after a diagnosis like multiple myeloma (MM). Virtual/digital coaching has been shown to reduce cancer-related distress and improve QOL among patients with cancer.

Objectives: We launched a single-arm pilot study to investigate the effect of a HealthTree Myeloma Coach (one-on-one personalized support program utilizing digital, virtual, or in-person interactions) on QOL for MM patients over a 6-month period.

Methods: We invited patients with active MM cancer or precursor conditions who have a HealthTree Cure Hub profile to participate online in an initial EORTC QLQ-C30 questionnaire. After a 6-month period, patients were subsequently invited to participate online in a follow-up EORTC QLQ-C30. Both initial and follow-up questionnaires had a screening question as to whether the patient had worked with a coach. Patient responses were scored 0 to 100 following the EORTC QLQ-C30 version 3.0 guidelines.

Results: Thirty-three MM patients participated in the initial QOL survey. Of these 33 patients, 8 have worked with a HealthTree Myeloma Coach for 6 months and completed the follow-up QOL survey. The average functional score (ie, physical, role, emotional, cognitive, and social functions) before and after working with a HealthTree Myeloma Coach increased favorably from 68.6 to 74.2 (+5.6), respectively. The average symptom score (ie, fatigue, nausea and vomiting, pain, dyspnea, insomnia, appetite loss, constipation, diarrhea, and financial difficulties) before and after working with a HealthTree Myeloma Coach stayed relatively the same at 27.2 and 27.8 (+0.6), respectively. Interestingly, the largest increase before and after working with a HealthTree Myeloma Coach was seen in the patients’ overall QOL with a score of 62.5 and 75 (+12.5), respectively.

Conclusions: Preliminary results illustrate patients with MM benefit from a HealthTree Myeloma Coach in regard to functional needs and QOL. In addition, needs related to health and symptoms remained relatively similar over the 6-month period, which should be interpreted as a positive benefit. Despite the limitations of this study, which included a small sample size and selection bias among enrolled patients and coaches, HealthTree Myeloma Coaches appear to improve the EORTC QLQ-C30 average functional score of MM patients, indicating that a one-on-one outreach program may help patients improve their overall QOL.


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C2 What Are the Top African American Myeloma Patient Concerns at and Since Diagnosis?


Marsha G. Calloway-Campbell, JD; Nathan W. Sweeney, PhD; David F. Barton, BA, MPA, MBA; Rozalynn W. Hite, OTR/L; Jorge Arturo Hurtado Martínez, MD; Jennifer M. Ahlstrom, BA; Jay R. Hydren, PhD

HealthTree Foundation, Lehi, UT

Background: First learning of a multiple myeloma (MM) or smoldering MM (SMM) diagnosis is a difficult and important initial step of a patient’s cancer journey. Unfortunately, this can be an overwhelming educational process made more difficult within racial/ethnic minorities who are both medically underserved and who may focus on different priorities.

Objectives: To spotlight the common concerns of newly diagnosed and changes in the top concerns since diagnosis of MM and SMM African American (AA) patients and compare their responses to non–African American (non-AA) patients.

Methods: Patients with MM and SMM were invited to participate in an online survey, hosted by the HealthTree Cure Hub platform, and asked to select concerns and questions from a list of 20 topics at and since diagnosis.

Results: Twenty-nine AAs completed the survey, of whom 83% had MM and 17% had SMM, 76% were diagnosed before 2021, 79% saw a specialist, age 66 ± 9 years, 79% female, 54% retired, 18% reported currently working, and 100% had health insurance. The non-AA group consisted of 285 patients, 76% with MM and 23% with SMM; 84% were diagnosed before 2021, 81% saw a specialist, age 65 ± 8 years, 57% female, 52% retired, 30% reported currently working, and 98% had health insurance. There were 6 questions that 50% or more of non-AAs had when they were diagnosed: What is my life expectancy? What are the treatment options? What is myeloma? Can myeloma be treated? What can I expect during treatment? and What side effects would I experience? AAs had these 6 questions, plus 4 more: Does my doctor have sufficient experience? How is my life going to change? Is it hereditary, could my family members get cancer? and What side effects would I experience? Since diagnosis, neither group had questions with >50% prevalence. The top 5 concerns changed, and there was differentiation with a subset of questions. Both groups kept the question What side effects would I experience? and added the questions What can I do to prevent further spreading of the disease? and Is a clinical trial right for me? which, importantly, was the top question for both groups since diagnosis (non-AA 30%; AA 42%). The non-AAs also continued to be concerned with: What are the treatment options? and What is my life expectancy? In contrast, AAs added 2 questions, within the same question domain, and not previously seen in other subanalyses: How do I deal with anxiety? (31%), and How do I deal with fear? (27%).

Conclusion: The results of this study reveal racial similarities and nuances of AA MM and SMM patients with non-AAs. Although both groups largely have similar questions and concerns at and since diagnosis, AAs have more questions at diagnosis, while questions of dealing with fear and anxiety became top concerns since diagnosis. Of current relevance, both groups’ top question since diagnosis indicates AAs become equally, and potentially more interested than non-AAs, in clinical trials.


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Our Health History Is in the Stories We Tell Within Black and Brown Families
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May 2023 Vol 14, No 5

With National Black Family Cancer Awareness Week (June 15-21, 2023) on the horizon, it is paramount to acknowledge the pivotal role that nurse navigators play in educating and empowering patients and their loved ones—to include fostering candid and transparent conversations about family health history, knowing our bodies, risk reduction, and proactive cancer screenings. As a breast cancer survivor and founder of the Tigerlily Foundation, I am a testament to the profound, lifesaving impact of these conversations. My mother was a nurse, and I often say that she gave me life and saved my life. Here’s how.

Category III: Patient Advocacy/Patient Empowerment
October 2022 Vol 13, No 10
Patient Advocacy Changes in a COVID-19 World
March 2022 Vol 13, No 3
Last modified: January 4, 2023

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