Feasibility of Using Mobile Health to Promote Self-Management in Spina Bifida

Dicianno, Brad E.; Fairman, Andrea D.; McCue, Michael; Parmanto, Bambang; Yih, Erika T.; McCoy, Andrew; Pramana, Gede; Yu, Daihua X.; McClelland, Justin; Collins, Diane; Brienza, David M.

doi:10.1097/phm.0000000000000400

Cited by 57 publications

(43 citation statements)

References 28 publications

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“…In light of the growing need of persons with BSA, we developed iMHere (Interactive Mobile Health and Rehabilitation), an mHealth system to support a self-management program [ 19 ]. The initial version of iMHere 1.0 connected adults with disabilities to clinicians and was implemented to support individuals with SB [ 20 ] and spinal cord injury (SCI). iMHere 1.0 was developed on an Android platform and did not support iPhone or other non-Android users.…”

Section: Introductionmentioning

confidence: 99%

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management

Bendixen

Fairman

Karavolis

et al. 2017

JMIR Mhealth Uhealth

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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.

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Section: Introductionmentioning

confidence: 99%

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management

Bendixen

Fairman

Karavolis

et al. 2017

JMIR Mhealth Uhealth

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“…With regard to apps specifically targeting persons with a DD, Dicianno and colleagues [35][36][37] developed an integrated system to support self-management of several health-related activities among individuals with spina bifida [38], which showed improvements in self-management abilities [35]. The interactive Mobile Health and Rehabilitation (iMHere) system comprises 6 smartphone modules providing reminders to individuals to take their medications, perform their catheterization and bowel management programs, examine their skin, complete a survey assessing depressive symptoms, and send and receive messages to and from the clinician.…”

Section: Medication Management Appsmentioning

confidence: 99%

Identifying Medication Management Smartphone App Features Suitable for Young Adults With Developmental Disabilities: Delphi Consensus Study (Preprint)

Salgado¹,

Fedrigon²,

Omichinski³

et al. 2017

Preprint

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BACKGROUND Smartphone apps can be a tool to facilitate independent medication management among persons with developmental disabilities. At present, multiple medication management apps exist in the market, but only 1 has been specifically designed for persons with developmental disabilities. Before initiating further app development targeting this population, input from stakeholders including persons with developmental disabilities, caregivers, and professionals regarding the most preferred features should be obtained. OBJECTIVE The aim of this study was to identify medication management app features that are suitable to promote independence in the medication management process by young adults with developmental disabilities using a Delphi consensus method. METHODS A compilation of medication management app features was performed by searching the iTunes App Store, United States, in February 2016, using the following terms: adherence, medication, medication management, medication list, and medication reminder. After identifying features within the retrieved apps, a final list of 42 features grouped into 4 modules (medication list, medication reminder, medication administration record, and additional features) was included in a questionnaire for expert consensus rating. A total of 52 experts in developmental disabilities, including persons with developmental disabilities, caregivers, and professionals, were invited to participate in a 3-round Delphi technique. The purpose was to obtain consensus on features that are preferred and suitable to promote independence in the medication management process among persons with developmental disabilities. Consensus for the first, second, and third rounds was defined as ≥90%, ≥80%, and ≥75% agreement, respectively. RESULTS A total of 75 responses were received over the 3 Delphi rounds—30 in the first round, 24 in the second round, and 21 in the third round. At the end of the third round, cumulative consensus was achieved for 60% (12/20) items in the medication list module, 100% (3/3) in the medication reminder module, 67% (2/3) in the medication administration record module, and 63% (10/16) in the additional features module. In addition to the medication list, medication reminder, and medication administration record features, experts selected the following top 3 most important additional features: automatic refills through pharmacies; ability to share medication information from the app with providers; and ability to share medication information from the app with family, friends, and caregivers. The top 3 least important features included a link to an official drug information source, privacy settings and password protection, and prescription refill reminders. CONCLUSIONS Although several mobile apps for medication management exist, few are specifically designed to support persons with developmental disabilities in the complex medication management process. Of the 42 different features assessed, 64% (27/42) achieved consensus for inclusion in a future medication management app. This study provides information on the features of a medication management app that are most important to persons with developmental disabilities, caregivers, and professionals.

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“…We also conducted a series of accessibility studies [ 18 , 19 ] to inform development for individuals with motor, cognitive and sensory impairments. We then conducted a clinical trial of the system in a group of adults with SB and found that higher utilization of the mHealth system resulted in improved self-management outcomes [ 20 ]. Additionally, a personal health record module and a module that educates users on issues relevant to their health have been subsequently built.…”

Section: Introductionmentioning

confidence: 99%

Design of Mobile Health Tools to Promote Goal Achievement in Self-Management Tasks

Dicianno

Henderson

Parmanto

2017

JMIR Mhealth Uhealth

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BackgroundGoal-setting within rehabilitation is a common practice ultimately geared toward helping patients make functional progress.ObjectiveThe purposes of this study were to (1) qualitatively analyze data from a wellness program for patients with spina bifida (SB) and spinal cord injury (SCI) in order to generate software requirements for a goal-setting module to support their complex goal-setting routines, (2) design a prototype of a goal-setting module within an existing mobile health (mHealth) system, and (3) identify what educational content might be necessary to integrate into the system.MethodsA total of 750 goals were analyzed from patients with SB and SCI enrolled in a wellness program. These goals were qualitatively analyzed in order to operationalize a set of software requirements for an mHealth goal-setting module and identify important educational content.ResultsThose of male sex (P=.02) and with SCI diagnosis (P<.001) were more likely to achieve goals than females or those with SB. Temporality (P<.001) and type (P<.001) of goal were associated with likelihood that the goal would be achieved. Nearly all (210/213; 98.6%) of the fact-finding goals were achieved. There was no significant difference in achievement based on goal theme. Checklists, data tracking, and fact-finding tools were identified as three functionalities that could support goal-setting and achievement in an mHealth system. Based on the qualitative analysis, a list of software requirements for a goal-setting module was generated, and a prototype was developed. Targets for educational content were also generated.ConclusionsInnovative mHealth tools can be developed to support commonly set goals by individuals with disabilities.

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Feasibility of Using Mobile Health to Promote Self-Management in Spina Bifida

Abstract: Use of the iMHere system in spina bifida is feasible and was associated with short-term self-reported improvements in self-management skill. This system holds promise for use in many diverse chronic care models to support and increase self-management skills.

Cited by 57 publications

References 28 publications

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management

Identifying Medication Management Smartphone App Features Suitable for Young Adults With Developmental Disabilities: Delphi Consensus Study (Preprint)

Design of Mobile Health Tools to Promote Goal Achievement in Self-Management Tasks

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