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A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.

ABSTRACT: BACKGROUND:Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT. OBJECTIVE:This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0). METHODS:Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection. RESULTS:Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being. CONCLUSIONS:This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/resprot.4918.

SUBMITTER: Chaar D

PROVIDER: S-EPMC6913725 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.

Chaar Dima D Shin Ji Youn JY Mazzoli Amanda A Vue Rebecca R Kedroske Jacob J Chappell Grant G Hanauer David A DA Barton Debra D Hassett Afton L AL Choi Sung Won SW

JMIR mHealth and uHealth 20191024 10

<h4>Background</h4>Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.<h4>Objective</h4>This study explored the views and perceptions of family caregive ...[more]

PMID: 31651402

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Project description:BACKGROUND:Cancer patients who undergo allogeneic hematopoietic stem cell transplantation are among the most medically fragile patient populations with extreme demands for caregivers. Indeed, with earlier hospital discharges, the demands placed on caregivers continue to intensify. Moreover, an increased number of allogeneic hematopoietic stem cell transplantations are being performed worldwide, and this expensive procedure has significant economic consequences. Thus, the health and well-being of family caregivers have attracted widespread attention. Mobile health technology has been shown to deliver flexible, and time- and cost-sparing interventions to support family caregivers across the care trajectory. OBJECTIVE:This protocol aims to leverage technology to deliver a novel caregiver-facing mobile health intervention named Roadmap 2.0. We will evaluate the effectiveness of Roadmap 2.0 in family caregivers of patients undergoing hematopoietic stem cell transplantation. METHODS:The Roadmap 2.0 intervention will consist of a mobile randomized trial comparing a positive psychology intervention arm with a control arm in family caregiver-patient dyads. The primary outcome will be caregiver health-related quality of life, as assessed by the PROMIS Global Health scale at day 120 post-transplant. Secondary outcomes will include other PROMIS caregiver- and patient-reported outcomes, including companionship, self-efficacy for managing symptoms, self-efficacy for managing daily activities, positive affect and well-being, sleep disturbance, depression, and anxiety. Semistructured qualitative interviews will be conducted among participants at the completion of the study. We will also measure objective physiological markers (eg, sleep, activity, heart rate) through wearable wrist sensors and health care utilization data through electronic health records. RESULTS:We plan to enroll 166 family caregiver-patient dyads for the full data analysis. The study has received Institutional Review Board approval as well as Code Review and Information Assurance approval from our health information technology services. Owing to the COVID-19 pandemic, the study has been briefly put on hold. However, recruitment began in August 2020. We have converted all recruitment, enrollment, and onboarding processes to be conducted remotely through video telehealth. Consent will be obtained electronically through the Roadmap 2.0 app. CONCLUSIONS:This mobile randomized trial will determine if positive psychology-based activities delivered through mobile health technology can improve caregiver health-related quality of life over a 16-week study period. This study will provide additional data on the effects of wearable wrist sensors on caregiver and patient self-report outcomes. TRIAL REGISTRATION:ClinicalTrials.gov NCT04094844; https://www.clinicaltrials.gov/ct2/show/NCT04094844. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/19288.

Project description:BackgroundThe Roadmap mobile health (mHealth) app was developed to provide health-related quality of life (HRQOL) support for family caregivers of patients with cancer.MethodsEligibility included: family caregivers (age ≥18 years) who self-reported as the primary caregiver of their pediatric patient with cancer; patients (age ≥5 years) who were receiving cancer care at the University of Michigan. Feasibility was calculated as the percentage of caregivers who logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the 120-day study duration. Feasibility and acceptability was also assessed through a Feasibility and Acceptability questionnaire and the Mobile App Rating Scale to specifically assess app-quality. Exploratory analyses were also conducted to assess HRQOL self- or parent proxy assessments and physiological data capture.ResultsBetween September 2020-September 2021, 100 participants (or 50 caregiver-patient dyads) consented and enrolled in the ONC Roadmap study for 120-days. Feasibility of the study was met, wherein the majority of caregivers (N=32; 65%) logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the study duration (defined a priori in the Protocol). The Feasibility and Acceptability questionnaire responses indicated that the study was feasible and acceptable with the majority (>50%) reporting Agree or Strongly Agree with positive Net Favorability [(Agree + Strongly Agree) - (Disagree + Totally Disagree)] in each of the domains (e.g., Fitbit use, ONC Roadmap use, completing longitudinal assessments, engaging in similar future study, study expectations). Improvements were seen across the majority of the mental HRQOL domains across all groups; even though underpowered, there were significant improvements in caregiver-specific aspects of HRQOL and anxiety and in depression and fatigue for children (ages 8-17 years), and a trend toward improvement in depression for children ages 8-17 years and in fatigue for adult patients.ConclusionsThis study supports that mHealth technology may be a promising platform to provide HRQOL support for caregivers of pediatric patients with cancer. Importantly, the findings suggest that the study protocol was feasible, and participants were favorable to participate in future studies of this intervention alongside routine cancer care delivery.

Project description:BackgroundThe number of solid organ transplants (SOT) in Canada has increased 33% over the past decade. Hospital readmissions are common within the first year after transplant and are linked to increased morbidity and mortality. Nearly half of these admissions to hospital appear to be preventable. Mobile health (mHealth) technologies hold promise to reduce admission to hospital and improve patient outcomes as they allow real-time monitoring and timely clinical intervention.ObjectiveTo determine whether an innovative mHealth intervention can reduce hospital readmission and unscheduled visits to the emergency department (ED) or transplant clinic. Our second objective is to assess the use of clinical and continuous ambulatory physiologic data to develop machine learning algorithms to predict risk of infection, organ rejection, and early mortality in adult heart, kidney, and liver transplant recipients.MethodsREmote moBile Outpatient mOnitoring in Transplant (Reboot) 2.0 is a two-phased single-center study to be conducted at the University Health Network (UHN) in Toronto, Canada. Phase 1 will consist of a 1-year concealed randomized control trial of 400 adult heart, kidney, and liver transplant recipients. Participants will be randomized to receive either personalized communication using a mHealth application in addition to standard of care phone communication (intervention group), or standard of care communication only (control group). In phase two, the prior collected dataset will be utilized to develop machine learning (ML) algorithms to identify early markers of rejection, infection, and graft dysfunction post-transplantation. The primary outcome will be a composite of any unscheduled hospital admission, visits to the ED or transplant clinic following discharge from the index admission. Secondary outcomes will include: 1) patient-reported outcomes using validated self-administered questionnaires; 2) 1-year graft survival rate; 3) 1-year patient survival rate; and 4) number of standard of care phone voice messages.ResultsAt the time of this manuscript's completion, no results are available.ConclusionsBuilding from previous work, this project will aim to leverage an innovative mHealth application to improve outcomes and reduce hospital readmission in adult SOT recipients. Additionally, the development of ML algorithms to better predict adverse health outcomes will allow for personalized medicine to tailor clinician-patient interactions, and mitigate the healthcare burden of a growing patient population.ClinicaltrialClinicalTrials.gov NCT04721288; https://www.clinicaltrials.gov/ct2/show/NCT04721288.

Project description:Importance:Studies demonstrating improved survival after allogeneic hematopoietic cell transplant generally exclude infants. Objective:To analyze overall survival trends and other outcomes among infants who undergo allogeneic hematopoietic cell transplant. Design, Setting, and Participants:In this cohort study, we used time-trend analysis to evaluate 3 periods: 2000 through 2004, 2005 through 2009, and 2010 through 2014. The study was conducted in a multicenter setting through the Center for International Blood and Marrow Transplant Research, which is made up of a voluntary working group of more than 450 transplant centers worldwide. Two groups of infants aged 1 year or younger in 2 cohorts were included: those with malignant conditions, such as leukemia, and those with nonmalignant disorders, including immunodeficiencies. Data analysis was conducted from July 2017 to December 2018. Exposures:Allogeneic hematopoietic cell transplant. Main Outcomes and Measures:Survival trends, disease relapse, and toxicity. Results:A total of 2498 infants with a median age of 7 months (range, <1-12 months) were included. In the nonmalignant cohort (n = 472), survival rates improved from the first to the second period (hazard ratio, 0.77 [95% CI, 0.63-0.93]; P = .007) but did not change after 2004. Compared with infants with nonmalignant diseases (n = 2026; 3-year overall survival: 2000-2004, 375/577 [65.0%]; 2005-2009, 503/699 [72.0%]; and 2010-2014, 555/750 [74.0%]), those with malignant conditions had poorer survival rates, without improvement over time (3-year overall survival: 2000-2004, 109/199 [54.8%]; 2005-2009, 104/161 [64.6%]; and 2010-2014, 66/112 [58.9%]). From 2000 through 2014, relapse rates increased in infants with malignant conditions (3-year relapse rate: 2000-2004, 19% [95% CI, 14%-25%]; 2005-2009, 23% [95% CI, 17%-30%]; 2010-2014, 36% [95% CI, 27%-46%]; P = .01). Sinusoidal obstruction syndrome was frequent, occurring with a cumulative incidence of 13% (95% CI, 11%-16%) of infants with nonmalignant diseases and 32% (95% CI, 22%-42%) of those with malignant diseases. Generally, recipients of human leukocyte antigen-identical sibling bone marrow grafts had the best outcomes. Conclusions and Relevance:Survival rates have not improved for infants with malignant diseases over the 15-year study period. Infants with nonmalignant diseases had improved survival rates in the earlier but not the later study period. Higher relapses for the malignant cohort and toxicities for all infants remain significant challenges. Strategies to reduce relapse and toxicity and optimize donor and graft selection may improve outcomes in the future.

Project description:Adolescence can be a fertile time for relationship issues, with interpersonal conflict being a risk factor for poor mental health. Mobile app interventions may have a significant appeal to young people in assisting with relationship distress. However, currently available apps have not been formally evaluated. Youths' perspectives on engaging with mobile technology to assist with relationships are also unknown.This study aimed to examine adolescents' attitudes toward the concept of a mobile phone app for relationship help and support, and whether they would be likely to use such an intervention.A cross-sectional Web survey consisting of 42 questions, including 13 free responses, was delivered. The proposed app, including character vignettes, was presented, and participants were asked to indicate whether they had experienced the same relationship issues, whether their peers would relate to the issues, and how helpful they found the proposed advice. Participants were also asked to provide their own suggestions for help, which were analyzed using thematic analyses.A total of 150 adolescents (aged 15 to 18) participated. Overall, 60.7% (91/150) were likely to use an app for relationship problems, and this was not associated with demographics or social support (all P values >.05). Likelihood of app usage was found to be influenced by perceived need for help, personal beliefs about app effectiveness, and whether the app is engaging and easy to use. Overall, adolescents were receptive of the proposed content with an average of 99.3% (149/150), rating the strategies provided as somewhat to very helpful.Adolescents were likely to use a mobile phone app for relationship support, and use was not influenced by gender, age, social support, or any other background characteristic. Instead, likely use was influenced by need, personal beliefs, usability, and the appropriateness of app content. App developers must address these factors if the app is to have a wide-scale uptake.

Project description:BackgroundA growing number of cancer and hematopoietic stem cell transplant (HSCT) survivors require long-term follow-up with optimal communication schemes, and patients' compliance is crucial. Adolescents have various unmet needs. Regarding self-report of symptoms and health status, users of mobile apps showed enhanced compliance. Currently, HSCT aftercare at the HSCT outpatient clinic of the St. Anna Children's Hospital in Vienna, Austria, is based on handwritten diaries, carrying various disadvantages. Recently, we developed the prototype of a web-based, self-monitoring gamified mobile app tailored for adolescents: the INTERACCT (Integrating Entertainment and Reaction Assessment into Child Cancer Therapy) app.ObjectiveThis observational, prospective study evaluated the usability of the INTERACCT app for tracking real-time self-reported symptoms and health status data in adolescent HSCT patients and a healthy matched control group. The primary outcome of the study was the quality of the self-reported medical information. We hypothesized that the mobile app would provide superior medical information for the clinicians than would the handwritten diaries.MethodsHealth data were reported via paper diary and mobile app for 5 consecutive days each. The quality of medical information was rated on a 5-point scale independently and blinded by two HSCT clinicians, and the duration of use was evaluated. A total of 52 participant questionnaires were assessed for gaming patterns and device preferences, self-efficacy, users' satisfaction, acceptability, and suggestions for improvement of the mobile app. Interrater reliability was calculated with the intraclass correlation coefficient, based on a two-way mixed model; one-way repeated-measures analysis of variance and t tests were conducted post hoc. Descriptive methods were used for correlation with participants' demographics. For users' satisfaction and acceptability of the mobile app, the median and the IQR were calculated.ResultsData from 42 participants-15 patients and 27 healthy students-with comparable demographics were evaluated. The results of our study indicated a superiority of the quality of self-reported medical data in the INTERACCT app over traditional paper-and-pencil assessment (mobile app: 4.14 points, vs paper-based diary: 3.77 points, P=.02). The mobile app outperformed paper-and-pencil assessments mainly among the patients, in particular among patients with treatment-associated complications (mobile app: 4.43 points, vs paper-based diary: 3.73 points, P=.01). The mobile app was used significantly longer by adolescents (≥14 years: 4.57 days, vs ≤13 years: 3.14 days, P=.03) and females (4.76 days for females vs 2.95 days for males, P=.004). This corresponds with a longer duration of use among impaired patients with comorbidities. User satisfaction and acceptability ratings for the mobile app were high across all groups, but adherence to entering a large amount of data decreased over time. Based on our results, we developed a case vignette of the target group.ConclusionsOur study was the first to show that the quality of patient-reported medical information submitted via the INTERACCT app embedded in a serious game is superior to that submitted via a handwritten diary. In light of these results, a refinement of the mobile app supported by a machine learning approach is planned within an international research project.

Project description:BackgroundIn the United States, hematopoietic stem cell transplant (HCT) surpasses 22,000 procedures annually. Due to the demanding and time-intensive process of an HCT, patients and family care partners face unique challenges involving their health and well-being. Positive psychology interventions (PPIs) may offer potential solutions to help boost health and well-being.ObjectiveThis study aimed to explore and understand patients' experiences and perceptions about the use of the Roadmap 2.0 app, specifically its PPI features, during the acute phase of HCT.MethodsFrom an ongoing randomized controlled trial, HCT patients (n=17) were recruited to participate in semistructured qualitative interviews between October 2022 and January 2023 within a large academic medical center in the Midwestern states. Using a qualitative descriptive approach, interviews were conducted in person or via Zoom. The data were analyzed through constant comparative analysis. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were followed.ResultsThe majority of the participants reported Roadmap 2.0 as easy to use and enjoyed the ability to track their health data (eg, steps, mood, sleep; 9/17). Regarding the use of PPIs during the acute phase of treatment, 88% of the participants reported interest in participating in PPIs, specifically the Pleasant Activity Scheduling (11/17) followed by Gratitude Journaling (7/17) activities. Additionally, participants provided recommendations on adapting Roadmap 2.0. The major recommendations were (1) "Working Together: Need for Dyadic Involvement," (2) "Connectivity with Other Patients," and (3) "Gap in Nutritional Support." Participants (10/17) expressed the importance of caregiver involvement in activities beyond treatment-related management for maintaining healthy patient-caregiver dyadic relationships. They also expressed their desire for connectivity with other patients undergoing HCT, primarily for comparing experiences and discussing topics such as symptom management (8/17). Lastly, participants identified a gap in nutritional support during the HCT process and expressed interest in an intervention that could promote healthy eating through education and notification reminders (9/17).ConclusionsParticipants openly expressed their eagerness to participate in research studies that foster connection and positive relationships with their caregivers as well as with other HCT patients. They emphasized the significance of having access to nutritional support or guidance and highlighted the potential benefits of using mobile technology to enhance these collective efforts.Trial registrationClinicalTrials.gov NCT04094844; https://clinicaltrials.gov/study/NCT04094844.International registered report identifier (irrid)RR2-10.2196/19288.

Dataset Information

A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.

Publications

A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.

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