Search

PURPOSEThe study of rare diseases, such as multiple myeloma (MM), often experiences unique research hurdles that can delay or prevent lifesaving discoveries. HealthTree Cure Hub is a first-in-class software program designed to overcome these potential research hurdles.METHODSWe assessed whether HealthTree Cure Hub improved four commonly experienced research hurdles such as (1) small numbers of patient accrual to clinical trials and research studies, (2) shallow and isolated data sets, (3) high costs to answer research questions, and (4) lack of long-term follow-up patient data.RESULTSAs of June 2021, HealthTree Cure Hub, with its unique portal features, has attracted 9,225 patients with MM and diverse demographic backgrounds. While completing an online health profile, patients shared comprehensive data, as well as provided consent to contribute data from electronic medical records. Portal use answered research questions using patient-driven real-world data. This also cultivated relationships with patients and established communication channels that enabled continual patient contact to allow for long-term follow-up.CONCLUSIONThese results suggest that a patient-driven data capture tool such as HealthTree Cure Hub will help alleviate common research hurdles, which, in turn, will accelerate MM research, develop new hypotheses, and ultimately improve survival.

8046 Background: As treatments advance in multiple myeloma (MM) and increasingly deeper and longer responses are achieved, the definition of what a cure is becomes increasingly relevant. While many physicians quote that patients may achieve a “functional cure”, understanding the patient perspective on the concept of cure has yet to be explored. Methods: HealthTree Cure Hub by the HealthTree Foundation represents an online portal for patients with plasma cell dyscrasias to help navigate their disease. It is the largest single database of patients with multiple myeloma with over 10,200 patients as of January 2022. Using this platform, we surveyed patients online from November 11th 2021 to Feb 7th 2022. Varying scenarios incorporating toxicity, disease status, and being on/off treatment were presented, and participants were asked to rate them from 1-5, with 5 being an ideal cure. Patient awareness of the term functional or operational cure was also. Results: A total of 1525 participants completed the survey. Table lists characteristics of the patients who completed this survey. The majority of the patients were female (55.5%), college educated (88.5%) and non-Hispanic White (70.7%). Most patients rated being off treatment permanently and having no evidence of disease as a cure (1116/1469, 75.5%), with a median score of 5 amongst respondents, indicating an ideal version of cure. Continuing to take the same pill or injection with significant toxicity and no evidence of disease had a median score of 1, a score lower than either “continuing to take same pill or injection without significant toxicity even in the evidence of disease” (median score 2) or “stopping treatment permanently even with some detectable disease” (median score 2). The majority of patients (76.3%) reported being unfamiliar with the term functional or operational cure. Conclusions: In the first study of patients with plasma cell dyscrasias in which patients were asked about their perceptions of what a cure is, our results highlight that drug toxicity and being on treatment profoundly impacts patient's perception of cure. Furthermore, most patients are not familiar with the term functional or operational cure. Future efforts should recruit more diverse patient populations and incorporate patient preferences in approaches to defining cure in myeloma, as well as explaining cure in easily comprehensible terms to patients. [Table: see text]

8058 Background: Previous studies have observed smoldering multiple myeloma (SMM) patients with a biomarker criteria of > 20% bone marrow plasma cells, > 2 g/dL M protein spike, and > 20 free light chain ratio, also known as 20/2/20, are at a higher risk of progressing to multiple myeloma (MM) than others. These findings have ignited interest in pursuing early intervention for these high-risk patients. However, we asked if early intervention would be beneficial for all SMM patients regardless of the progression risk level. Methods: We utilized real-world data from HealthTree Cure Hub for Multiple Myeloma to first, determine whether 20/2/20 resulted in a higher risk of progression and second, analyze whether early intervention delayed progression from SMM to MM. A 2-sample t-test was used to compare 20/2/20 to non-20/2/20 patients, as well as in the comparison between SMM patients who received early intervention with treatment to without early intervention. Results: We found that patients who met at least two of the criteria of 20/2/20 had a tendency to progress to MM 35% faster than patients who did not meet the criteria (n = 36, p-value < 0.10). While not significant, it’s still worth noting that there is a difference in the mean time to progression for these patients. Next, we found SMM patients who do not receive early intervention with treatment develop MM two times faster than those who do receive early intervention with treatment, regardless of progression risk level (n = 129, p-value < 0.001). Conclusions: Our results revealed that at least two of the biomarker criteria could aid in the identification of patients with a higher risk of progression. However, a casual approach of “sit and wait” for patients to develop 20/2/20 is not warranted since our findings revealed that all SMM patients benefited from treatment intervention regardless of the progression risk level.

e20003 Background: People that live in rural areas experience significant health disparities from higher incidences of disease and disability, increased mortality rates, and lower life expectancies. Rural risk factors for health disparities include geographic isolation, lower socioeconomic status, limited access to healthcare specialists and sub-specialists, and limited job opportunities. Interestingly, we often see other, non-white, races experience delays in care, are under-treated, and lack of access to MM specialists. We, therefore, investigated whether there was a relationship between race and where one lives geographically. Methods: Validated real-world (RW) MM patient data was collected through HealthTree Cure Hub for Multiple Myeloma (healthtree.org). We examined the patient’s race which was either Caucasian American (White) or any other race (Black American, Asian, American Indian, East Indian, Middle Eastern, or Native Hawaiian) which was categorized as “non-White” and where they lived geographically (Rural, Urbanized Cluster, or Urban Areas). The association between race and geographic classification was compared by using a chi-squared test. Results: In this retrospective analysis of 2,687 MM patients, we compared the geographical classification of Whites (n = 2403) and non-Whites (n = 284). Our analysis revealed a significant association between the two groups and where they lived with a chi-square value of 20.455 (2, n = 2,687, p < 0.001). We found that Whites are 1.9 times more likely to live in urbanized cluster areas and 2.7 times more likely to live in a rural area compared to non-Whites. Conclusions: The results of this RW analysis identified a disparity among races and where one lives geographically. While there is strong evidence of health disparities our findings revealed that where one lives geographically is not a probable reason why non-Whites experience delays in care, are under-treated, or lack access to MM specialists.

e20024 Background: Chimeric antigen receptor (CAR) T-cell therapies are in clinical development for multiple myeloma (MM). Patient-reported outcomes (PRO) can provide valuable insights into how patients perceive the relative risks and benefits of these new therapies. This study aimed to evaluate CAR T-cell therapy in relapsed/refractory MM (RRMM) patients. Methods: We utilized HealthTree Cure Hub for Multiple Myeloma to analyze patient-reported data from 17 patients who participated in CAR T-cell clinical trials. In this study, we examined total prior lines of therapy, time to next treatment (TNT), overall survival (OS), patient-reported toxicity and severity, and patient-reported outcomes (myeloma reduction or no myeloma reduction). The Kaplan-Meier model was used to calculate overall survival. The severity of toxicity was assessed using a 1 to 10 scale (1 = minimal and 10 = severe). Results: Our analysis of the 17 patients found a median of 10 lines of therapy prior to CAR T-cell treatment. Ten patients had no new treatments to report at the time of this study, 5 patients reported new treatment with a median TNT of 15.9 months, and for 2 patients we did not have data. The median OS was 24 months (95% CI 21-30 months). The probability that a patient remained alive at 2 years was 0.48 (95% CI: 0.195, 1). Four of the 17 patients died with a median of 22.5 months post-CAR T-cell therapy. Two of these patients died without reporting a change in treatment. There was a total of 36 different side effects reported by patients as a result of the therapy. Table lists the side effects experienced by 2 or more patients and the corresponding average severity. Finally, 76% of patients treated with CAR T-cell therapy reported a reduction in their myeloma, four of these patients had m-protein levels reported and saw an average decrease of 93%. Of the remaining patients, three (18%) reported little to no reduction in their myeloma, and one patient (6%) did not know their response at the time of this analysis. Conclusions: Our investigation of patient-reported results suggests an emerging and viable immunotherapy treatment option for RRMM, with encouraging outcomes and manageable side effects. Future directions include analysis of genetics and treatment options post CAR T-cell therapy. These data highlight the expedited benefit of using PROs via an online platform, like HealthTree Cure Hub, to assess new therapeutics in the research community.[Table: see text]

e20022 Background: Patient-reported data play a critical role in assessing clinical benefit from therapeutic interventions and are increasingly used in clinical trials. Internet-based platforms such as HealthTree Cure Hub for Multiple Myeloma ( www.healthtree.org ) provide the opportunity to obtain such real-world patient-reported data, while also providing valuable insights into high-yield areas to focus on quality-improvement efforts. For example, proteasome inhibitor (PI)-based maintenance after autologous stem cell transplantation (ASCT) is a consensus recommendation in many practice guidelines for high-risk multiple myeloma (MM) yet real-world adherence to this practice remains uncertain (PMID 23541011, 30932732). Methods: We examined post-ASCT maintenance therapy in patients with high-risk MM, as defined per mSMART criteria, using patient-reported treatment data from the HealthTree Cure Hub for Multiple Myeloma database. Patients who received an ASCT prior to 2014 were excluded. Results: Our analysis identified 110 MM patients with high-risk MM. Of those, only 48 (44%) received PI-based maintenance therapy. Additionally, 60 (55%) received IMiD (immunomodulatory imide drug) maintenance, 1 (< 1%) received ‘other’, and 1 (< 1%) did not report maintenance therapy. Conclusions: The benefits of PI-based maintenance in MM are well established for high-risk MM. However, analysis of patient-reported data using an online patient portal, HealthTree Cure Hub for Multiple Myeloma, suggests a disparity between practice recommendations and real-world practice patterns. These findings, and others from online patient portals, can serve as a springboard in helping investigators to identify areas for quality-improvement initiatives.

e20044 Background: Recent advancements in the treatment of plasma cell disorders (PCD) have led to a revolution in treatment options. Despite improved outcomes, patients have unmet symptom management needs. Integrative medicine (IM) is a method for addressing symptoms in cancer, but its use and efficacy is poorly defined in PCD patients. This analysis describes the utilization of IM among myeloma patients and explores associations with symptom burden. Methods: For 3 months, a 70-question online survey was hosted on HealthTree.org, an online resource for myeloma patients and researchers created by the HealthTree Foundation. The survey included questions about demographics, PCD type, disease stage, complementary practice use, PHQ-2 score (depression screen), and quality of life (sum of 6 interference items; possible score range 0-6). Mean outcome values were compared between IM users and non-users using two-sample t-tests. Proportions of supplement users and IM users were compared between patients currently on myeloma-specific treatment and patients not currently on treatment using chi-square tests. Results: Of 195 total respondents, 17 were excluded for not completing the survey section on IM practices. Median age range was 60-69 years old, 61% were female, 91% were non-Hispanic white, and 57% were overweight or obese. Plasma cell subtypes were active myeloma (81%), smoldering myeloma (12%), MGUS (3%), amyloidosis (2%), and plasmacytoma (1%), and 72% of patients were currently on cancer-specific treatment. On a scale of 1-10 (1=very uncomfortable; 10=very comfortable), patients reported a mean score of 3.7 when discussing IM therapies with their oncologist. The top 10 IM modalities reported were aerobic exercise (83%), nutrition (67%), natural products (60%), strength exercise (52%), support groups (48%), breathing exercises (44%), meditation (42%), yoga (40%), mindfulness-based stress reduction (38%), and massage (38%). Those who participated in meditation had significantly higher PHQ-2 scores (worse depression) than non-participants (1.1 vs. 0.8; p=0.05). Users of support groups (3.4 vs. 2.7; p=0.04), medicinal marijuana (4.0 vs. 2.9; p=0.03), or vitamin C (3.6 vs. 2.7; p=0.01) reported higher mean interference (worse quality of life) than non-users. Compared to patients currently on cancer treatment for PCD, untreated patients were significantly more likely to use curcumin (58% vs. 41%; p=0.04) or green tea (44% vs. 17%; p

e20026 Background: Whether tandem autologous stem cell transplant (ASCT) is superior to single ASCT for new diagnosed multiple myeloma (MM) patients remains a subject of discussion in the era of novel agents. This project analyzed patient-reported outcomes to single ASCT and tandem ASCT utilizing an online patient-centered platform. Methods: We analyzed patient-reported treatment outcomes pertaining to tandem ASCT and single ASCT from HealthTree Cure Hub ( www.healthtree.org ). In this study, we examined whether patients reported a reduction or no reduction in their myeloma after their tandem or single ASCT. The association between stem cell transplant and myeloma outcome was compared by chi-squared test. Results: In this retrospective analysis of 945 MM patients, we compared two groups, those that reported receiving a tandem ASCT (n = 75) and those that reported receiving a single ASCT (n = 870). Our analysis revealed an association between patients who reported receiving a tandem ASCT and a reduction of their myeloma (chi-square (1) = 3.87, p = .04), compared to patients who reported receiving a single ASCT. Conclusions: Tandem ASCT was perceived by patients to be superior over single ASCT in regard to myeloma reduction for the HealthTree patient population. A more in-depth analysis of the patient-provided health data from HealthTree could aid in determining factors related to survival as well as help to quickly answer lingering questions related to tandem ASCT, such as timing, genetic factors, progression free survival, and more.[Table: see text]

e20025 Background: Patients with multiple myeloma (MM) are uniquely susceptible to viral and bacterial illnesses. In addition, MM and its treatments lead to immune deficiency, putting patients at a high risk for infection, including the novel coronavirus (COVID-19). The emotional impact of COVID-19 on high-risk groups, such as MM patients, remains unclear. The purpose of this project was to understand psychosocial distress and unmet needs among patients with active MM during the acute and chronic phase of COVID-19 and its impact in the United States. Methods: We utilized the HealthTree Cure Hub (healthtree.org) and invited patients with active MM cancer or precursor conditions to participate in an online CancerSupportSource distress screening questionnaire by the Cancer Support Community. Participants were asked to rate their level of concern (Not at All to Very Seriously) on 12 items assessing physical, psychosocial, and practical needs during the acute and chronic phase of the COVID-19 pandemic. De-identified responses were aggregated and reviewed. Results: 1,079 MM patients analyzed during the acute phase of the pandemic (April 15, 2020, to June 8, 2020) and 246 were analyzed during the chronic phase (January 8, 2021, to February 12, 2021). The percent of patients responding moderately to very seriously concerned are reported here. While eating and nutrition increased 3% from acute (71%) to chronic (74%) phases, physical needs overall decreased 2%. Psychosocial needs (worrying about the future, family concerns, feeling irritable, sad, nervous, or lonely, and relationship concerns) decreased 4% between the two phases, despite the 2% increase in problems with your spouse/partner. Additionally, practical needs (health insurance or money worries) decreased 4% between the acute and chronic phases of the pandemic. Conclusions: Respondents to our survey maintain a concern for eating and nutrition during the acute and chronic phases of the pandemic. Between the three types of needs examined in this survey, physical needs had the smallest change over time. This information can inform patients and medical professionals of the type of distress experienced by patients and help investigators assess the needs of the patient community to enhance patient outcomes.[Table: see text]

e20565 Background: Multiple myeloma (MM) prognostic risk factors include cancer genetics as well as imaging characteristics. In order to engage the patient (pt) community regarding genetic testing and diagnostic imaging we utilized a patient-centered platform, HealthTree (www.healthtree.org), to evaluate the patient understanding of cancer genetic characteristics as well as evaluation of radiology methods used to evaluate their disease. Methods: An investigator-submitted online survey asking pts about myeloma genetic testing and imaging was fielded via HealthTree to 4,944 pts from May 10, 2019, to January 9, 2020. De-identified responses were aggregated and reviewed. The study was determined to be exempt by the Western Institutional Review Board. Results: 558 MM pts participated in the surveys. Pts who received more than one imaging or genetic test were able to indicate by selecting more than one option, this total response is indicated in the tables. Abbreviated questions and simplified responses are noted in the Table including: 1. At your diagnosis (or any time), did you receive any of the following tests to better understand the genetic profile of your disease? 2. At diagnosis (or any time), what imaging (radiology) tests were performed? Conclusions: Patient self-reported data registries are limited by patient perception or recall; however, these engaged and online MM pts may also be more biased toward knowing more about their medical history than the average pt. There are certainly real or perceived gaps in optimized genetic and imaging testing, which may reflect a communication or education gap. Pt reported interventions via an online portal can help investigators survey the pt community and result in hypothesis generating research questions including the actual use of testing, communication and education about testing and testing options, and MD trends in testing. [Table: see text][Table: see text]

e20567 Background: Multiple myeloma (MM) is a cancer of the immune system. Infection is a major cause of morbidity and mortality in MM. Vaccines are the first line of prevention for infectious diseases. Anti-microbial prophylaxis may improve patient (pt) outcomes, but real-world use has not been well characterized. In order to engage the pt community regarding vaccination we utilized HealthTree (www.healthtree.org). Methods: An investigator-submitted online survey asking about infection prophylaxis and vaccinations was fielded to 4,944 pts from May 10, 2019, to January 9, 2020. The HealthTree platform queries pts about sharing data for research purposes. De-identified responses were aggregated and reviewed. The study was determined to be exempt by the Western Institutional Review Board. Results: 458 MM pts participated in the surveys and were able to select more than one option with the total response indicated below. Abbreviated questions and simplified responses are noted in Table including: 1. Have you ever been vaccinated in the last 5 years with a pneumococcal vaccine (PV)? 2. In the last 3 flu seasons, have you received the influenza vaccine (FV)? 3. After you began myeloma treatment, did you ever receive the anti-Varicella Zoster Virus (VZV, shingles) vaccine? 4. Were you (or are you currently) treated with anti-viral prophylaxis? 5. Were you (or are you currently) treated with antibiotic bactrim? 6. Were you (or are you currently) treated with levofloxacin prior to stem cell transplant or at the beginning of your MM therapy? Conclusions: Both FV and PV were fairly high in this self-selected cohort of volunteers compared with a large health system ( http://ow.ly/O8Dx30b9Wuc ) and a global registry ( http://ow.ly/Uofg30h6Qen ). Most did not receive an anti-VZV vaccine, but a few received a live vaccine. Anti-viral prophylaxis was common, but not universal. Anti-PJP and levofloxacin use were reported by a minority of participants. Pt reported interventions via an online portal can help investigators survey the pt community and result in hypothesis generating research questions including investigating vaccine: types, dosing, sequencing, and use of anti-infective interventions. [Table: see text]