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

Syrjala, Karen L.; Crouch, Marie-Laure; Leisenring, Wendy; Flowers, Mary E.D.; Artherholt, Samantha B.; Fiscalini, Allison Stover; Romano, Eleni M.; Romano, Joan M.; Martin, Paul J.; Yi, Jean C.

doi:10.1016/j.bbmt.2018.05.004

Cited by 17 publications

(15 citation statements)

References 53 publications

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“…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).…”

Section: Resultsmentioning

confidence: 99%

“…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.…”

Section: Resultsmentioning

confidence: 99%

“… 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.…”

Section: A General Search Termsmentioning

confidence: 99%

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The Landscape of Connected Cancer Symptom Management in Rural America

Chih¹,

Mccowan²,

Whittaker³

et al. 2020

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Background The 2016 President’s Cancer Panel called for projects focusing on improving cancer symptom management using connected health technologies (broadband and telecommunications). However, rural communities, like those in Appalachia, may experience a “double burden” of high cancer rates and lower rates of broadband access and adoption necessary for connected health solutions. Purpose To better understand the current landscape of connected health in the management of cancer symptoms in rural America. Methods A literature search was conducted using four academic databases (PubMed, CINAHL, MEDLINE, and PsycINFO) to locate articles published from 2010 to 2019 relevant to connected cancer symptom management in rural America. Text screening was conducted to identify relevant publications. Results Among 17 reviewed studies, four were conducted using a randomized controlled trial; the remainder were formative in design or small pilot projects. Five studies engaged stakeholders from rural communities in designing solutions. Most commonly studied symptoms were psychological/emotional symptoms, followed by physical symptoms, particularly pain. Technologies used were primarily telephone-based; few were Internet-enabled video conferencing or web-based. Advanced mobile and Internet-based approaches were generally in the development phase. Overall, both rural patients and healthcare providers reported high acceptance, usage, and satisfaction of connected health technologies. Ten of the 17 studies reported improved symptom management outcomes. Methodological challenges that limited the interpretation of the findings were summarized. Implications The review identified a need to engage rural stakeholders to develop and test connected cancer symptom management solutions that are based on advanced mobile and broadband Internet technologies.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: A General Search Termsmentioning

confidence: 99%

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The Landscape of Connected Cancer Symptom Management in Rural America

Chih¹,

Mccowan²,

Whittaker³

et al. 2020

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“…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.…”

Section: Methodsmentioning

confidence: 99%

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

Walsh

Rosenberg

et al. 2020

Psycho-Oncology

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Objective: Hematopoietic stem cell transplantation (HSCT) can compromise longterm health and social functioning. We examined the impact of physical and socialemotional factors on the social functioning of long-term adolescent and young adult (AYA) HSCT survivors. Methods: This cross-sectional analysis included HSCT recipients from the INSPIRE trial [NCT00799461] who received their first transplant between ages 15-39. Patient-reported outcome measures included the Short Form-36v2, Fatigue Symptom Inventory, Cancer and Treatment Distress, and the ENRICHD Social Support Inventory. We used hierarchical multiple linear regression to identify physical and social-emotional factors associated with social functioning at the baseline assessment, with the first block including sociodemographic and clinical factors significant at P = <0.10 in univariate testing, the second block including fatigue and physical function, and the third block including social support and distress. Results: Participants (N = 279) were 52% male and 93.5% white, non-Hispanic, with a mean age of 30.3 (SD 6.6) at first transplant. Social Functioning mean was 48.5 (SD 10.5), below age-adjusted norms (t = −13.6, P = <0.001). In the first block, current chronic graft-vs-host disease accounted for 5.5% of the variance (P = <0.001). Adding fatigue and physical function explained an additional 46.6% of the variance (P = <0.001). Adding distress and social support explained an additional 7.7% of the variance (P = <0.001). The final model explained 59.8% of the variance; distress, fatigue, and physical function were significantly associated with social functioning. Conclusions: Distress, fatigue, and physical function are associated with social functioning and interventions targeting these symptoms may help to improve SF among long-term cancer survivors treated with HSCT as AYAs.

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“…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.…”

Section: Introductionmentioning

confidence: 99%

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

Preussler

Denzen

Majhail

et al. 2019

Support Care Cancer

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Purpose-INSPIRE (INteractive Survivorship Program with Information and REsources) is an online health program that includes a mobile app, website, health action plan, and individualized survivorship care plans for adult hematopoietic cell transplant (HCT) survivors. The INSPIRE program integrates two previously effective randomized control trials that tested an internet-based program and patient-centered survivorship care plans for HCT survivors. Methods-Three focus groups were conducted with a total of 22 participants (20 patients, 2 caregivers/patient advocates) to explore patient and caregiver preferences and to optimize the patient-centered emphasis of INSPIRE. Adult (age > 18 years at the time of study entry) HCT recipients had to be at least 1-year post-HCT to participate; caregivers/patient advocates were also eligible. Participants had to be able to communicate in English, could have any diagnosis, transplant type, or donor source, and could have had multiple transplants. Results-All patient participants received an allogeneic HCT; average time since HCT was 8 years (range 2-22 years). The majority of participants were female (77.3%). Overall, the tools were well received by participants in this study, particularly the personalized features of all the tools. Major themes included interest in having the ability to tailor features to individual needs, and an interest in tracking information over time. Discussion-Engaging patients and caregivers is invaluable to optimize tools designed to improve HCT survivorship care.

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

Cited by 17 publications

References 53 publications

The Landscape of Connected Cancer Symptom Management in Rural America

The Landscape of Connected Cancer Symptom Management in Rural America

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

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

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