HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Sweeney, Nathan W.; Ahlstrom, Jennifer M.; Davies, Faith E.; Thompson, Michael A.

doi:10.1200/cci.21.00141

Cited by 3 publications

(1 citation statement)

References 27 publications

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“…For the current study, the following questionnaires were posted on the HealthTree® Cure Hub website (14) between December 2019 and April 2022: visual analog scale for pain; European Organisation for Research and Treatment of Cancer, Quality of Life, Cancer-Related Fatigue Questionnaire (EORTC QLQ-FA12); National Comprehensive Cancer Network (NCCN) Distress Thermometer; and a Basic Assessment of Physical Activity (BAPA) questionnaire, which was developed by the authors specifically to study PA in MM patients. In addition to study-specific questionnaires, the HealthTree® Cure Hub is used to collect self-reported data on an individual's demographics, laboratory values, treatment histories, and other health-related information (15). The study was promoted through email, social media, and community events.…”

Section: Methodsmentioning

confidence: 99%

Physical Activity and Patient-Reported Outcomes in Monoclonal Plasma Cell Disorders

Joseph

Hillengaß

Sweeney

et al. 2023

Medicine &Amp; Science in Sports &Amp; Exercise

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Introduction Plasma cell disorders (PCD) are a group of conditions characterized by disproportionate proliferation of a single clone of B lymphocytes. Multiple myeloma (MM) is a malignant type of PCD. Improvements in MM survival have led patients and physicians to pursue strategies to improve quality of life for those living longer with this disease. Bone disease and instability associated with MM have made physicians reluctant to recommend physical activity (PA) to this patient population. The goal of this study was to examine the relationship between PA and physical and psychosocial patient-reported outcomes (PRO) in patients with MM and precursor conditions. Methods We employed a cross-sectional study design. Questionnaires on PA, demographics, fatigue, distress, and other aspects of quality of life were posted on the HealthTree® Cure Hub website, a patient portal through which individuals with MM and related disorders obtain support, track labs and other information about their diseases, and participate in research. Results A total of 794 individuals, including 664 with MM, are included in the current analysis. We observed potential inverse associations between PA and poor quality of life, including problems with sleep, fatigue, neuropathy, distress, and several psychosocial states. On average, patients reported that their PA levels have declined since diagnosis and that they would like to be even more active in the future than they were prior to their diagnosis. Conclusions In our cross-sectional study, regular physical activity was associated with multiple quality-of-life indicators and other PROs, including better sleep and less fatigue, neuropathy, and distress. The findings of this study can help guide the design of prospective studies of the role of PA in MM survivorship.

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Section: Methodsmentioning

confidence: 99%

Physical Activity and Patient-Reported Outcomes in Monoclonal Plasma Cell Disorders

Joseph

Hillengaß

Sweeney

et al. 2023

Medicine &Amp; Science in Sports &Amp; Exercise

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Direct-to-Patient Clinical Trials: One Small Step or a Giant Leap?

Desai

Subbiah

2023

Clinical Cancer Research

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Patient perspectives on BCMA-targeted therapies for multiple myeloma: a survey conducted in a patient advocacy group

Hydren,

Lin,

Sweeney

et al. 2024

Front. Health Serv.

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BackgroundAdvances in multiple myeloma (MM) treatment have shifted the therapeutic landscape. Understanding patients' perspectives can assist physicians in helping patients make informed decisions. This study aimed to understand the patient decision-making process and gain insights into patient perspectives on B-cell maturation antigen (BCMA)-targeted therapies for MM.MethodsAn 18-question survey was completed by patients with MM enrolled in HealthTree® Cure Hub, an online portal helping patients with plasma cell dyscrasias navigate their disease.ResultsFrom October 28, 2022, to January 12, 2023, 325 patients with MM participated in the survey. The mean age (standard deviation) of the respondents was 66 (8) years; 54% were female and 90% were White. Among 218 patients with complete clinical records in the database, the median (min, max) lines of therapy (LOT) was 2 (1,16). Among 61 (28%) patients who had received ≥4 LOTs, 55 (90%) were triple-class exposed. Of the 290 patients who responded to the question about openness to new therapies, 76 (26%) were open to trying a new therapy immediately and 125 (43%) wanted more information on safety and efficacy. Most respondents reported likely or very likely to try a BCMA CAR T-cell therapy (60%) or a bispecific antibody (74%) and some needed more information to decide (16% for CAR T-cell therapy and 13% for bispecific antibody). The most requested information included efficacy, side effects (SEs), eligibility, and administration process for both CAR T-cell and bispecific therapies. When 2 therapies with the same efficacy and duration of response were offered, 69% of respondents would prefer the therapy with a lower risk of severe SEs but requires continuous dosing with no treatment-free interval, and 31% preferred a therapy given once followed by a treatment-free interval but with a potentially higher risk of severe SEs. To receive an effective therapy, the top acceptable trade-offs included frequent monitoring of SEs and initiating a new therapy in a hospital setting, and the least acceptable compromise was caregiver burden.ConclusionsThis study found a high level of openness in patients with MM to try BCMA-targeted therapies. Information on efficacy, safety, availability, and eligibility may assist patients on decision-making.

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HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Cited by 3 publications

References 27 publications

Physical Activity and Patient-Reported Outcomes in Monoclonal Plasma Cell Disorders

Physical Activity and Patient-Reported Outcomes in Monoclonal Plasma Cell Disorders

Direct-to-Patient Clinical Trials: One Small Step or a Giant Leap?

Patient perspectives on BCMA-targeted therapies for multiple myeloma: a survey conducted in a patient advocacy group

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