BackgroundMany adolescents and young adults with chronic illness or disability often fail to develop the self-management skills necessary to independently handle medical and self-management routines. In light of these needs, we are developing iMHere 2.0 (Interactive Mobile Health and Rehabilitation), a mobile health (mHealth) system to support a self-management program.ObjectiveOur objective was to gather data from persons with brain and spinal cord anomalies (BSA) and their caregivers to better understand how mHealth would be most helpful in supporting them to proactively manage daily self-care routines and to access medical care as needed. The specific purpose was not only to gather feedback and to gain increased insight into the design of the new version of iMHere, but also to gather perspectives of new groups, namely adolescents as young as 12 years and their parents and/or caregivers.MethodsOur project employed focus group sessions and surveys to collect data from participants with BSA, as well as their caregivers. A total of six focus group sessions were conducted on four separate occasions until the data gathered reached saturation. The objectives of our focus group sessions were to better understand ways to develop mHealth systems to support self-management, to promote independence, to motivate long-term system use, and to prevent medical problems that lead to hospitalizations and emergency room visits for youth and young adults with BSA.ResultsA total of 16 youth and young adults with BSA and 11 caregivers participated in the sessions. Within and among our groups, the following five overarching themes emerged from the data: (1) make it easy, (2) engage, (3) educate and prepare, (4) motivate and support, and (5) personalize. Participants shared their perspectives and detailed information about mHealth apps that would be important for independence in self-care and self-management.ConclusionsOur findings suggest that most individuals keep their mobile phones with them at all times and typically use a mobile phone for social media, music, photos, and texting. Our qualitative analysis indicates that youth and young adults with BSA, as well as their caregivers, acknowledge the importance of being actively engaged in developing and using mHealth apps that monitor and manage their health care needs. Information gleaned from these focus group sessions and surveys have provided data to refine the iMHere 2.0 mHealth prototype platform that we have developed.
Importance:The need for cancer rehabilitation is expected to continue to dramatically increase with the aging population and increasing number of cancer survivors. These survivors experience a wide range of physical limitations and symptoms that negatively affect their health and quality of life. Research is needed to determine the rate of adherence, reasons for non-adherence, and interventions to improve adherence to acute inpatient rehabilitation among patients with cancer. Objective: To evaluate the rate of adherence and reasons for non-adherence to acute inpatient rehabilitation in patients with cancer. Design, Setting, and Participants: This was a secondary analysis of a retrospective study that assessed medical complications in 165 patients with cancer who had a median length of stay of 11 days (interquartile range of 8-14) in acute inpatient rehabilitation. We reviewed the records of all consecutive patients who underwent acute inpatient rehabilitation from September 1, 2017 through February 28, 2018 at a large academic, quaternary National Cancer Institute-designated Cancer Center. Main Outcomes and Measures: We calculated the rehabilitation session adherence rate and descriptively summarized the reasons for non-adherence. Results: There were 78/165 (47%) patients that had 1 or more incomplete rehabilitation sessions due to medical complications. These patients had a median of 2 (interquartile range of 1-4) incomplete rehabilitation sessions. We noted other reasons for incomplete rehabilitation sessions in 146/165 (89%) patients, who had a median of 3 (interquartile range of 2-4) incomplete rehabilitation sessions. The median total number of days with incomplete rehabilitation sessions in the entire cohort was 2 (interquartile range 1-3). Conclusion and Relevance: Among patients with cancer undergoing acute inpatient rehabilitation, the adherence rate to 1-hour long intensive rehabilitation sessions were low due to medical complications and other reasons. This in turn affected compliance with the 3 hours of rehabilitation a day requirement for acute inpatient rehabilitation. Patients with cancer undergoing acute inpatient rehabilitation are medically complex and further research at multiple institutions with larger cohorts may be beneficial in further assessing adherence rates and reasons for non-adherence to improve participation in acute inpatient rehabilitation.
Date Presented 4/7/2016 This randomized controlled trial explores the psychosocial and medical outcomes of use of the mobile health system with persons with spinal cord injury. Outcome measures include medical usage, cost and clinical efficiency, and self-management skills of the clients. Primary Author and Speaker: Andrea Fairman Additional Author and Speaker: Meredith Kravolis, Elizabeth Mueller, Carly Sullivan Contributing Authors: Brad E. Dicianno, Theresa Crytzer
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