Engagement with INSPIRE, an Online Program for Hematopoietic Cell Transplantation Survivors

Abstract

In a secondary analysis of a randomized controlled trial (RCT), we examined participants' engagement with INSPIRE, a personalized online program for hematopoietic cell transplantation (HCT) survivors that focuses on cancer-related distress, depression, fatigue, and health care needs. We approached all adult, 3- to 18-year HCT survivors treated for hematologic malignancy without relapse or second cancer in the previous 2 years for participation in an RCT with either immediate or delayed access to INSPIRE. Participants with immediate access could view the online material at any time. Data included page view tracking, medical records, and patient-reported outcomes, including the Short Form 36 and Cancer and Treatment Distress (CTXD) measures. Of 1322 eligible HCT survivors, 771 (58%) completed the baseline assessment, and 451 received immediate INSPIRE access and were included in analyses. The cohort was 56% male, with a mean age of 52 ± 12.2 years, and 26% received an autologous transplant. Most (77%) logged into the INSPIRE site at least once, and 48% viewed ≥8 pages. Survivors who viewed ≥2 pages were more likely to be age ≥40 years (relative risk [RR], 1.41; 95% confidence interval [CI], 1.10 to 1.80), to be female (RR, 1.22; 95% CI, 1.07 to 1.40), to have chronic graft-versus-host disease (RR, 1.28; 95% CI, 1.08 to 1.51), to be less than 10 years post-HCT (RR, 1.19; 95% CI, 1.01 to 1.39), and to have moderate CTXD distress (RR, 1.34; 95% CI, 1.14 to 1.57). Engagement did not differ by race, education, income, rural/urban residence, computer experience, donor type, or depression (all P ≥ .50). The INSPIRE online program was widely used, including by those who often have reduced access to care after treatment.

The Landscape of Connected Cancer Symptom Management in Rural America

“…The original screening yielded 22 selected articles. One paper 23 reported the engagement outcomes of a study whose main outcomes were reported elsewhere, 24 and the decision was to include it as well. Therefore, a total of 23 papers 23 – 45 representing 17 unique studies were included in this review ( Appendix 2 ; see Additional Files).…”

“…One paper 23 reported the engagement outcomes of a study whose main outcomes were reported elsewhere, 24 and the decision was to include it as well. Therefore, a total of 23 papers 23 – 45 representing 17 unique studies were included in this review ( Appendix 2 ; see Additional Files). Appendix 2 contains the summarized details of each of the 17 unique studies in these categories: study design, cancer population, symptoms, connected cancer symptom management system, feasibility, and key study impact.…”

“… 14. Syrjala (2018b), J. of Cancer Survivorship 24 Syrjala (2018a), Biology of Blood and Marrow Transplantation 23 An online, 3-arm RCT testing a web-based health information system, called and telehealth calls Among 337 hematopoietic cell transplant (HCT) survivors with high depression, distress, and fatigue, 66 (20%) were rural participants. Email and Internet access was required to join the study.…”

Factors associated with social functioning among long‐term cancer survivors treated with hematopoietic stem cell transplantation as adolescents or young adults

“…Survivors of a hematologic malignancy who were between 3 and 18 years post‐HSCT, able to communicate and complete patient‐reported outcome (PRO) measures in English, and with internet and email access were recruited from a single transplant center for the INSPIRE randomized controlled trial [NCT00799461] 18,19 . The Fred Hutchinson Cancer Research Center Institutional Review Board approved the trial.…”

Engaging hematopoietic cell transplantation patients and caregivers in the design of print and mobile application individualized survivorship care plan tools

“…In a multi-center prospective, randomized control trial (RCT), it was effective in reducing cancer and treatment distress and improved the mental health domain of quality of life [13]. An internet-based intervention, INSPIRE (INternet-based Survivorship Program with Information and Resources), was also tested in an RCT, and had a marginal benefit in alleviating distress in an intent-to-treat analysis, although a significant effect on relieving distress in those who logged into the program [15,16]. In an effort to further improve upon the out-comes of these two approaches, we are combining the individualized mailed SCPs and the INSPIRE intervention in an online health program with an interactive, individualized mobile app and website.…”