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1.
J Adolesc Young Adult Oncol ; 10(1): 100-104, 2021 02.
Article in English | MEDLINE | ID: mdl-32716668

ABSTRACT

This longitudinal study examined feasibility of "Roadmap 1.0," a modular health information application integrated with the electronic medical record, provided to 30 adolescent and young adult (AYA) inpatients 11-24 years of age undergoing hematopoietic stem cell transplantation (HSCT). Feasibility was demonstrated: 70% accessed the application. Utilization was highest the first 2 weeks of hospitalization, with the laboratory results module used most. Users' tension and fatigue were higher than nonusers' at baseline, but not hospital discharge or day 100. Results suggest AYAs utilize health information technology in ways consistent with the HSCT trajectory and Roadmap 1.0 addressed informational and psychological needs.


Subject(s)
Hematopoietic Stem Cell Transplantation , Medical Informatics , Adolescent , Aged , Fatigue , Female , Humans , Inpatients , Longitudinal Studies , Male , Young Adult
2.
Support Care Cancer ; 27(6): 2103-2112, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30232587

ABSTRACT

PURPOSE: We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121). METHODS: BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models. RESULTS: BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04). CONCLUSIONS: BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.


Subject(s)
Caregivers/psychology , Hematopoietic Stem Cell Transplantation/methods , Medical Informatics/methods , Neoplasms/therapy , Patient Reported Outcome Measures , Quality of Life/psychology , Transplantation Conditioning/methods , Adult , Aged , Child , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Young Adult
3.
JCO Clin Cancer Inform ; 2: 1-12, 2018 12.
Article in English | MEDLINE | ID: mdl-30652535

ABSTRACT

PURPOSE: Health information technology (IT) is an ideal medium to improve the delivery of patient-centered care and increase patient engagement. Health IT interventions should be designed with the end user in mind and be specific to the needs of a given population. Hematopoietic cell transplantation (HCT), commonly referred to as blood and marrow transplantation (BMT), is a prime example of a complex medical procedure where patient-caregiver-provider engagement is central to a safe and successful outcome. We have previously reported on the design and development of an HCT-specific health IT tool, BMT Roadmap. METHODS: This study highlights longitudinal quantitative and qualitative patient-reported outcomes (PROs) in 20 adult patients undergoing allogeneic HCT. Patients completed PROs at three time points (baseline, day 30 post-HTC, and day 100 post-HCT) and provided weekly qualitative data through semistructured interviews while using BMT Roadmap. RESULTS: The mean hospital stay was 23.3 days (range, 17 to 37 days), and patients had access to BMT Roadmap for a mean of 21.3 days (range, 15 to 37 days). The total time spent on BMT Roadmap ranged from 0 to 139 minutes per patient, with a mean of 55 minutes (standard deviation, 47.6 minutes). We found that patients readily engaged with the tool and completed qualitative interviews and quantitative PROs. The Patient Activation Measure, a validated measure of patient engagement, increased for patients from baseline to discharge and day 100. Activation was significantly and negatively correlated with depression and anxiety PROs at discharge, suggesting that this may be an important time point for intervention. CONCLUSION: Given the feasibility and promising results reported in this study, next steps include expanding our current health IT platform and implementing a randomized trial to assess the impact of BMT Roadmap on critical PROs.


Subject(s)
Hematopoietic Stem Cell Transplantation/methods , Medical Informatics/methods , Patient Participation/psychology , Patient Reported Outcome Measures , Adult , Aged , Evaluation Studies as Topic , Female , Hematopoietic Stem Cell Transplantation/psychology , Humans , Interviews as Topic , Length of Stay , Male , Middle Aged , Patient-Centered Care , Transplantation Conditioning , Transplantation, Homologous/psychology
4.
Biol Blood Marrow Transplant ; 23(5): 813-819, 2017 May.
Article in English | MEDLINE | ID: mdl-28132870

ABSTRACT

Health information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing first-time HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and single-institution experience, these initial findings are encouraging and support further investigation.


Subject(s)
Caregivers/education , Hematopoietic Stem Cell Transplantation/psychology , Medical Informatics/methods , Patient-Centered Care/methods , Adolescent , Adult , Caregivers/psychology , Child , Child, Preschool , Emotions , Female , Health Communication , Health Information Management , Hospitalization , Humans , Male , Medical Informatics/standards , Middle Aged , Patient Participation/methods , Patient Portals , Young Adult
5.
J Biomech Eng ; 137(10): 101001, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26201289

ABSTRACT

For the accurate prediction of the vascular disease progression, there is a crucial need for developing a systematic tool aimed toward patient-specific modeling. Considering the interpatient variations, a prior distribution of model parameters has a strong influence on computational results for arterial mechanics. One crucial step toward patient-specific computational modeling is to identify parameters of prior distributions that reflect existing knowledge. In this paper, we present a new systematic method to estimate the prior distribution for the parameters of a constrained mixture model using previous biaxial tests of healthy abdominal aortas (AAs). We investigate the correlation between the estimated parameters for each constituent and the patient's age and gender; however, the results indicate that the parameters are correlated with age only. The parameters are classified into two groups: Group-I in which the parameters ce, ck1, ck2, cm2,Ghc, and ϕe are correlated with age, and Group-II in which the parameters cm1, Ghm, G1e, G2e, and α are not correlated with age. For the parameters in Group-I, we used regression associated with age via linear or inverse relations, in which their prior distributions provide conditional distributions with confidence intervals. For Group-II, the parameter estimated values were subjected to multiple transformations and chosen if the transformed data had a better fit to the normal distribution than the original. This information improves the prior distribution of a subject-specific model by specifying parameters that are correlated with age and their transformed distributions. Therefore, this study is a necessary first step in our group's approach toward a Bayesian calibration of an aortic model. The results from this study will be used as the prior information necessary for the initialization of Bayesian calibration of a computational model for future applications.


Subject(s)
Aorta, Abdominal/physiology , Patient-Specific Modeling , Vascular Remodeling , Aged , Aorta, Abdominal/growth & development , Bayes Theorem , Biomechanical Phenomena , Calibration , Female , Humans , Male , Middle Aged , Multivariate Analysis , Young Adult
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