Models of childhood cancer survivorship care in Australia and New Zealand: Strengths and challenges.
Signorelli Christina,Wakefield Claire E,McLoone Jordana K,Fardell Joanna E,Lawrence Renae A,Osborn Michael,Truscott Jo,Tapp Heather,Cohn Richard J,
Asia-Pacific journal of clinical oncology
AIM:Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face. METHODS:We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10. RESULTS:Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment. CONCLUSION:The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age.
mHealth self-care interventions: managing symptoms following breast cancer treatment.
Fu Mei R,Axelrod Deborah,Guth Amber A,Rampertaap Kavita,El-Shammaa Nardin,Hiotis Karen,Scagliola Joan,Yu Gary,Wang Yao
BACKGROUND:Many women suffer from daily distressing symptoms related to lymphedema following breast cancer treatment. Lymphedema, an abnormal accumulation of lymph fluid in the ipsilateral body area or upper limb, remains an ongoing major health problem affecting more than 40% of 3.1 million breast cancer survivors in the United States. Patient-centered care related to lymphedema symptom management is often inadequately addressed in clinical research and practice. mHealth plays a significant role in improving self-care, patient-clinician communication, and access to health information. The-Optimal-Lymph-Flow health IT system (TOLF) is a patient-centered, web-and-mobile-based educational and behavioral mHealth interventions focusing on safe, innovative, and pragmatic electronic assessment and self-care strategies for lymphedema symptom management. The purpose of this paper is to describe the development and test of TOLF system. METHODS:The development of TOLF was guided by the Model of Self-Care for Lymphedema Symptom Management and designed based on principles fostering accessibility, convenience, and efficiency of mHealth system to enhance training and motivating assessment of and self-care for lymphedema symptoms. Test of TOLF was accomplished by conducting a psychometric study to evaluate reliability, validity, and efficiency of the electronic version of Breast Cancer and Lymphedema Symptom Experience Index (BCLE-SEI), a usability testing and a pilot feasibility testing of mHealth self-care interventions. RESULTS:Findings from the psychometric study with 355 breast cancer survivors demonstrated high internal consistency of the electronic version of the instrument: a Cronbach's alpha coefficient of 0.959 for the total scale, 0.919 for symptom occurrence, and 0.946 for symptom distress. Discriminant validity of the instrument was supported by a significant difference in symptom occurrence (z=-6.938, P<0.000), symptom distress (z=-5.894, P<0.000), and total scale (z=-6.547, P<0.000) between breast cancer survivors with lymphedema and those without it. Findings of usability testing showed that breast cancer survivors were very satisfied with the mHealth self-care interventions: 90% rated the system having no usability problems; 10% noted minor cosmetic problems: spelling errors or text font size. The majority of participants 96.6% strongly agreed that the system was easy to use and effective in helping to learn about lymphedema, symptoms and self-care strategies. Feasibility testing demonstrated that a 12-week one group intervention using TOLF had significantly positive effects on less pain (P=0.031), less soreness (P=0.021), less aching (P=0.024), less tenderness (P=0.039), fewer numbers of lymphedema symptoms (P=0.003), and improved symptom distress (P=0.000) at 12 weeks after intervention. Themes from the qualitative data included empowerment, high quality information, loving avatar simulation videos, easy accessibility, and user-friendliness. CONCLUSIONS:TOLF system using the electronic version of the instrument is able to assess patients' lymphedema symptoms with high reliability and validity. TOLF system is also able to deliver self-care interventions to enhance self-care strategies for lymphedema symptom management.
eHealth for Breast Cancer Survivors: Use, Feasibility and Impact of an Interactive Portal.
Kuijpers Wilma,Groen Wim G,Oldenburg Hester Sa,Wouters Michel Wjm,Aaronson Neil K,van Harten Wim H
BACKGROUND:MijnAVL is an interactive portal including patient education, overview of appointments, access to the electronic medical records (EMR), patient-reported outcomes, plus feedback and physical activity support. OBJECTIVE:With this study we aimed to evaluate the use, feasibility, and impact of MijnAVL among breast cancer survivors. METHODS:We included survivors currently or recently treated with curative intent, who completed questions on sociodemographics, patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for four months. Log data were collected retrospectively and participants completed questions on acceptability, satisfaction, and the PAM, SF-36 and IPAQ. RESULTS:Ninety-two women (mean age 49.5 years, 59% on-treatment) participated, with a mean number of logins of 8.7. Overview of appointments (80% of participants) and access to the EMR (90%) were most frequently used and most highly valued. Average website user satisfaction was 3.8 on a 5-point scale. Although participants reported having more knowledge and experiencing more control of their situation after using MijnAVL, PAM scores did not change significantly. Three domains of the SF-36 (role functioning - emotional, mental health, and social functioning) and median vigorous physical activity improved significantly over time. The burden of MijnAVL for professionals was limited. CONCLUSIONS:User experiences were positive and exposure to MijnAVL was accompanied by improvements in three quality of life domains and vigorous physical activity. Tailored features may be needed to enhance the usefulness and efficacy of MijnAVL. Research with a controlled design is needed to confirm our findings.
Smartphone-Enabled Health Coaching Intervention (iMOVE) to Promote Long-Term Maintenance of Physical Activity in Breast Cancer Survivors: Protocol for a Feasibility Pilot Randomized Controlled Trial.
Ritvo Paul,Obadia Maya,Santa Mina Daniel,Alibhai Shabbir,Sabiston Catherine,Oh Paul,Campbell Kristin,McCready David,Auger Leslie,Jones Jennifer Michelle
JMIR research protocols
BACKGROUND:Although physical activity has been shown to contribute to long-term disease control and health in breast cancer survivors, a majority of breast cancer survivors do not meet physical activity guidelines. Past research has focused on promoting physical activity components for short-term breast cancer survivor benefits, but insufficient attention has been devoted to long-term outcomes and sustained exercise adherence. We are assessing a health coach intervention (iMOVE) that uses mobile technology to increase and sustain physical activity maintenance in initially inactive breast cancer survivors. OBJECTIVE:This pilot randomized controlled trial (RCT) is an initial step in evaluating the iMOVE intervention and will inform development of a full-scale pragmatic RCT. METHODS:We will enroll 107 physically inactive breast cancer survivors and randomly assign them to intervention or control groups at the University Health Network, a tertiary cancer care center in Toronto, Canada. Participants will be women (age 18 to 74 years) stratified by age (55 years and older/younger than 55 years) and adjuvant hormone therapy (AHT) exposure (AHT vs no AHT) following breast cancer treatment with no metastases or recurrence who report less than 60 minutes of preplanned physical activity per week. Both intervention and control groups receive the 12-week physical activity program with weekly group sessions and an individualized, progressive, home-based exercise program. The intervention group will additionally receive (1) 10 telephone-based health coaching sessions, (2) smartphone with data plan, if needed, (3) supportive health tracking software (Connected Wellness, NexJ Health Inc), and (4) a wearable step-counting device linked to a smartphone program. RESULTS:We will be assessing recruitment rates; acceptability reflected in selective, semistructured interviews; and enrollment, retention, and adherence quantitative intervention markers as pilot outcome measures. The primary clinical outcome will be directly measured peak oxygen consumption. Secondary clinical outcomes include health-related quality of life and anthropometric measures. All outcome measures are administered at baseline, after exercise program (month 3), and 6 months after program (month 9). CONCLUSIONS:This pilot RCT will inform full-scale RCT planning. We will assess pilot procedures and interventions and collect preliminary effect estimates. TRIAL REGISTRATION:ClinicalTrials.gov NCT02620735; https://clinicaltrials.gov/ct2/show/NCT02620735 (Archived by WebCite at https://clinicaltrials.gov/ct2/show/NCT02620735).
Feasibility of smartphone application and social media intervention on breast cancer survivors' health outcomes.
Pope Zachary,Lee Jung Eun,Zeng Nan,Lee Hee Yun,Gao Zan
Translational behavioral medicine
Breast cancer survivors are at risk for poor health, with physical activity a possible treatment. Little research has examined how technology might promote breast cancer survivor physical activity or health. The aim of this study is to investigate the feasibility of employing a commercially available mobile health application- and social media-based health education intervention to improve breast cancer survivor physical activity or health.Ten breast cancer survivors (X̅ age = 45.80 ± 10.23 years; X̅ weight = 79.51 ± 20.85 kg) participated in this 10-week single-group pilot study from 2015 to 2016. Participants downloaded the MapMyFitness application, documented all physical activity with MapMyFitness, and were enrolled in a Social Cognitive Theory-based, Facebook-delivered health education intervention. Objectively measured physical activity, weight or body composition, cardiovascular fitness, psychosocial constructs, and quality of life indices were measured at baseline and 10 weeks. Intervention use and acceptability was evaluated during and following the intervention. Descriptive statistics were calculated for all study outcomes, with qualitative analyses performed regarding use and acceptability.At postintervention, average daily moderate-to-vigorous physical activity and steps increased by 2.6 min and 1,657, respectively, with notable decreases in weight (2.4 kg) and body fat percentage (2.3%). Physical activity-related social support and ability to engage in social roles or activity demonstrated the greatest improvements among all psychosocial and quality of life indices, respectively. Participants enjoyed the feedback and tracking features of MapMyFitness, with most finding the Facebook component helpful. All participants recommended the intervention for future use.Physical activity interventions combining commercially available mobile health applications and theoretically based social media-delivered health interventions may promote certain physiological, psychosocial, and quality of life outcomes among breast cancer survivors. Larger samples and randomized studies are warranted.
Female cancer survivor perspectives on remote intervention components to support physical activity maintenance.
Gell Nancy M,Tursi Alexandra,Grover Kristin W,Dittus Kim
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
PURPOSE:Physical activity minimizes the side effects of cancer; yet, participation rates among cancer survivors are low. Technological innovations are promoted as efficient means for communication and remote monitoring, but little is known about acceptability among female cancer survivors. The purpose of this study was to examine female cancer survivor perspectives on remote monitoring and communication to support independent, physical activity maintenance after completing a structured, facility-based program. METHODS:Participants were 19 female cancer survivors (mean age 56.3) recruited after completing a 12-week exercise-based oncology rehabilitation program. Semi-structured interviews were conducted with participants following a 4-week pilot trial of a tailored text message, FitBit®, and health coach intervention to support independent physical activity maintenance. All interviews were audio-recorded and transcribed. Transcripts from the interviews were iteratively coded by two team members using a thematic analysis. RESULTS:Participants reported acceptance and satisfaction with remote monitoring and communication. Emergent themes related to technology-based support for physical activity maintenance included the following: (1) accountability to a remote partner; (2) plan Bs, planning for barriers; (3) the habit cycle; (4) convenience through technology; and (5) reclaiming health ownership following a cancer diagnosis. CONCLUSIONS:Participants attributed physical activity maintenance to accountability enabled by technology. Communication based on remote monitoring was perceived as encouraging and not intrusive, during the transition to a home program. IMPLICATIONS FOR CANCER SURVIVORS:This study highlights the importance of accountability and support for physical activity adherence and the positive role that technology can provide for female cancer survivors to regain control of health management.
Cancer Survivors' Experience With Telehealth: A Systematic Review and Thematic Synthesis.
Cox Anna,Lucas Grace,Marcu Afrodita,Piano Marianne,Grosvenor Wendy,Mold Freda,Maguire Roma,Ream Emma
Journal of medical Internet research
BACKGROUND:Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors-individuals living with and beyond cancer-to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are "complex," and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized. OBJECTIVE:To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group. METHODS:Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. RESULTS:Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance-a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors' lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. CONCLUSIONS:Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.
A user centered design approach to development of an online self-management program for cancer survivors: Springboard Beyond Cancer.
Leach Corinne R,Diefenbach Michael A,Fleszar Sara,Alfano Catherine M,Stephens Robert L,Riehman Kara,Hudson Shawna V
OBJECTIVE:The American Cancer Society and the National Cancer Institute launched and evaluated a personalized online program leveraging behavioral science principles to help people self-manage physical and emotional symptoms, improve communication skills, and lead healthier lives during and after a cancer diagnosis. METHODS:Cancer survivors were recruited from an academic medical and a community clinical setting (N = 40) to complete in-person user testing of the Springboard Beyond Cancer website, which included action decks and content to promote self-management. Action decks were printable or savable collections of information and action steps related to a cancer topic or treatment side effect. Participants performed structured tasks to evaluate the program's content and usability. Comments and reactions were recorded, and qualitative thematic analyses were conducted. RESULTS:Most participants successfully found information about fatigue (95%), pain (83%), sexual side effects (90%), and support groups (85%). Survivors, particularly those in treatment, found information on the site to be clear, concise, and meeting their needs. Use of action decks to create self-management plans was inconsistent. Survivors reported needing more instruction and support within the program on how to best utilize enhanced functionality in action decks to prioritize their most pressing concerns. CONCLUSIONS:Early stakeholder engagement throughout the multiple phases of prototyping and deployment are needed to fully maximize end user engagement. Providing actionable self-management content and activating tools to cancer survivors via an eHealth program is a feasible and scalable approach to increasing access to self-management tools and addressing cancer survivor needs.
Development and pilot evaluation of a clinic-based mHealth app referral service to support adult cancer survivors increase their participation in physical activity using publicly available mobile apps.
Short Camille E,Finlay Amy,Sanders Ilea,Maher Carol
BMC health services research
BACKGROUND:Participation in regular physical activity holds key benefits for cancer survivors, yet few cancer survivors meet physical activity recommendations. This study aimed to develop and pilot test a mHealth app referral service aimed at assisting cancer survivors to increase their physical activity. In particular, the study sought to examine feasibility and acceptability of the service and determine preliminary efficacy for physical activity behaviour change. METHODS:A systematic search identified potentially appropriate Apple (iOS) and Android mHealth apps. The apps were audited regarding the type of physical activity encouraged, evidence-based behavioural strategies and other characteristics, to help match apps to users' preferences and characteristics. A structured service was devised to deliver the apps and counselling, comprising two face-to-face appointments with a mid-week phone or email check-up. The mHealth app referral service was piloted using a pre-post design among 12 cancer survivors. Participants' feedback regarding the service's feasibility and acceptability was sought via purpose-designed questionnaire, and analysed using inductive thematic analysis and descriptive statistics. Change in physical activity was assessed using a valid and reliable self-report tool and analysed using paired t-tests. In line with recommendations for pilot studies, confidence intervals and effect sizes were reported to aid interpretation of clinical significance, with an alpha of 0.2 used to denote statistical significance. RESULTS:Of 374 mHealth apps identified during the systematic search, 54 progressed to the audit (iOS = 27, Android = 27). The apps consistently scored well for aesthetics, engagement and functionality, and inconsistently for gamification, social and behaviour change features. Ten participants completed the pilot evaluation and provided positive feedback regarding the service's acceptability and feasibility. On average, participants increased their moderate-vigorous physical activity by 236 min per week (d = 0.73; 95% CI = -49 to 522; p = 0.09). CONCLUSION:This study offered initial evidence that a mHealth app referral service for cancer survivors is feasible and acceptable and may increase physical activity levels. The large increase in physical activity is promising, but should be interpreted with caution given the small sample size and lack of control group. Further research is warranted on a larger scale to investigate generalisability, long-term compliance and application in clinical settings.
A Mobile System to Improve Quality of Life Via Energy Balance in Breast Cancer Survivors (BENECA mHealth): Prospective Test-Retest Quasiexperimental Feasibility Study.
Lozano-Lozano Mario,Cantarero-Villanueva Irene,Martin-Martin Lydia,Galiano-Castillo Noelia,Sanchez Maria-José,Fernández-Lao Carolina,Postigo-Martin Paula,Arroyo-Morales Manuel
JMIR mHealth and uHealth
Achieving value in mobile health applications for cancer survivors.
Davis Sharon Watkins,Oakley-Girvan Ingrid
Journal of cancer survivorship : research and practice
PURPOSE:This study aimed to identify appropriate development and testing strategies for mobile health applications for cancer survivors. METHODS:In January of 2016, we conducted a PubMed search for mobile applications for cancer survivors. A total of 32 articles were selected for inclusion, including 13 review articles, and 19 articles describing an mHealth application or intervention. We assessed mobile app development and testing strategies and standards as described in these articles. RESULTS:We identified seven elements of patient empowerment applications for cancer survivors, strategies for application development that take advantage of smartphone capabilities, issues for consideration in developing new applications, and steps for creating user-centered mobile health applications that provide meaningful value for cancer survivors. However, few mobile health apps implemented empowerment elements, underwent rigorous design approaches, or included assessment of use in the cancer survivor population. CONCLUSIONS:There is tremendous potential for mobile health apps to benefit cancer survivors. However, there are specific issues for consideration in developing new applications and steps for creating user-centered applications which are not routinely used. This diminishes the value for the cancer survivor population but could be easily addressed through standardized development and testing procedures. IMPLICATIONS FOR CANCER SURVIVORS:Smartphone applications have the potential to improve the cancer survivorship experience, but users should look for evidence that the application was appropriately developed and tested.
Effectiveness of Two Web-Based Interventions for Chronic Cancer-Related Fatigue Compared to an Active Control Condition: Results of the "Fitter na kanker" Randomized Controlled Trial.
Bruggeman-Everts Fieke Z,Wolvers Marije D J,van de Schoot Rens,Vollenbroek-Hutten Miriam M R,Van der Lee Marije L
Journal of medical Internet research
BACKGROUND:Approximately one third of all patients who have been successfully treated for cancer suffer from chronic cancer-related fatigue (CCRF). Effective and easily accessible interventions are needed for these patients. OBJECTIVE:The current paper reports on the results of a 3-armed randomized controlled trial investigating the clinical effectiveness of two different guided Web-based interventions for reducing CCRF compared to an active control condition. METHODS:Severely fatigued cancer survivors were recruited via online and offline channels, and self-registered on an open-access website. After eligibility checks, 167 participants were randomized via an embedded automated randomization function into: (1) physiotherapist-guided Ambulant Activity Feedback (AAF) therapy encompassing the use of an accelerometer (n=62); (2) psychologist-guided Web-based mindfulness-based cognitive therapy (eMBCT; n=55); or (3) an unguided active control condition receiving psycho-educational emails (n=50). All interventions lasted nine weeks. Fatigue severity was self-assessed using the Checklist Individual Strength - Fatigue Severity subscale (primary outcome) six times from baseline (T0b) to six months (T2). Mental health was self-assessed three times using the Hospital Anxiety and Depression Scale and Positive and Negative Affect Schedule (secondary outcome). Treatment dropout was investigated. RESULTS:Multiple group latent growth curve analysis, corrected for individual time between assessments, showed that fatigue severity decreased significantly more in the AAF and eMBCT groups compared to the psycho-educational group. The analyses were checked by a researcher who was blind to allocation. Clinically relevant changes in fatigue severity were observed in 66% (41/62) of patients in AAF, 49% (27/55) of patients in eMBCT, and 12% (6/50) of patients in psycho-education. Dropout was 18% (11/62) in AAF, mainly due to technical problems and poor usability of the accelerometer, and 38% (21/55) in eMBCT, mainly due to the perceived high intensity of the program. CONCLUSIONS:Both the AAF and eMBCT interventions are effective for managing fatigue severity compared to receiving psycho-educational emails. TRIAL REGISTRATION:Trialregister.nl NTR3483; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3483 (Archived by WebCite at http://www.webcitation.org/6NWZqon3o).
The use of telemedicine in the care of the pediatric trauma patient.
Kim Paul T,Falcone Richard A
Seminars in pediatric surgery
Telemedicine is increasingly becoming an important part of the health care system as it has the potential to help deliver quality medical care to underserved areas. When implemented correctly, it can be a cost-effective way of expanding access to excellent medical care. However, because it is a relatively new and quickly changing field, there are multiple issues and challenges that need to be addressed. This article reviews the current literature on various modalities of telemedicine, evidence for teletrauma, and challenges and barriers related to telemedicine.
A review of the use and effectiveness of digital health technologies in patients with asthma.
Unni Elizabeth,Gabriel Susan,Ariely Rinat
Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology
OBJECTIVE:A new generation of digital health technologies (DHT) offers the opportunity to improve adherence and asthma control. Recent literature was reviewed to summarize the use of technological aids and evaluate their impact on health outcomes in patients with asthma. DATA SOURCES:PubMed and Embase were searched to identify articles published over the past 5 years (2013 to 2017). STUDY SELECTIONS:All records were judged for eligibility by 2 independent reviewers; 28 articles met the inclusion criteria. RESULTS:Interactive websites were the most frequently evaluated type of DHT (50% of all studies), followed by mobile apps in adult patient cohorts. Relatively few studies assessed electronic monitoring devices, phone calls, or text messaging. Among the 16 studies that focused on children, most interventions that used interactive websites (n = 8) showed at least some benefit, although results varied based on the specific outcome. Twelve studies focused on adults, with interventions using interactive websites (n = 6) reporting results that were generally less consistent compared with the pediatric studies. The 6 studies that assessed mobile apps with adult patients reported consistent benefits across a range of outcomes, including medication adherence and asthma control. CONCLUSION:Most interventions reported at least some benefit, although results varied based on the specific outcome. Overall, technology that included more interactive features, such as website-based daily diary entries and apps that provided real-time feedback, was associated with increased asthma control, as was the case for multidimensional interventions that combined the use of several complementary types of DHT.
Methods of usability testing in the development of eHealth applications: A scoping review.
Maramba Inocencio,Chatterjee Arunangsu,Newman Craig
International journal of medical informatics
BACKGROUND:The number of eHealth applications has exponentially increased in recent years, with over 325,000 health apps now available on all major app stores. This is in addition to other eHealth applications available on other platforms such as PC software, web sites and even gaming consoles. As with other digital applications, usability is one of the key factors in the successful implementation of eHealth apps. Reviews of the literature on empirical methods of usability testing in eHealth were last published in 2015. In the context of an exponentially increasing rate of App development year on year, an updated review is warranted. OBJECTIVE:To identify, explore, and summarize the current methods used in the usability testing of eHealth applications. METHODS:A scoping review was conducted on literature available from April 2014 up to October 2017. Four databases were searched. Literature was considered for inclusion if it was (1) focused on an eHealth application (which includes websites, PC software, smartphone and tablet applications), (2) provided information about usability of the application, (3) provided empirical results of the usability testing, (4) a full or short paper (not an abstract) published in English after March 2014. We then extracted data pertaining to the usability evaluation processes described in the selected studies. RESULTS:133 articles met the inclusion criteria. The methods used for usability testing, in decreasing order of frequency were: questionnaires (n = 105), task completion (n = 57), 'Think-Aloud' (n = 45), interviews (n = 37), heuristic testing (n = 18) and focus groups (n = 13). Majority of the studies used one (n = 45) or two (n = 46) methods of testing. The rest used a combination of three (n = 30) or four (n = 12) methods of testing usability. None of the studies used automated mechanisms to test usability. The System Usability Scale (SUS) was the most frequently used questionnaire (n = 44). The ten most frequent health conditions or diseases where eHealth apps were being evaluated for usability were the following: mental health (n = 12), cancer (n = 10), nutrition (n = 10), child health (n = 9), diabetes (n = 9), telemedicine (n = 8), cardiovascular disease (n = 6), HIV (n = 4), health information systems (n = 4) and smoking (n = 4). Further iterations of the app were reported in a minority of the studies (n = 41). The use of the 'Think-Aloud' (Pearson Chi-squared test: χ2 = 11.15, p < 0.05) and heuristic walkthrough (Pearson Chi-squared test: χ2 = 4.48, p < 0.05) were significantly associated with at least one further iteration of the app being developed. CONCLUSION:Although there has been an exponential increase in the number of eHealth apps, the number of studies that have been published that report the results of usability testing on these apps has not increased at an equivalent rate. The number of digital health applications that publish their usability evaluation results remains only a small fraction. Questionnaires are the most prevalent method of evaluating usability in eHealth applications, which provide an overall measure of usability but do not pinpoint the problems that need to be addressed. Qualitative methods may be more useful in this regard. The use of multiple evaluation methods has increased. Automated methods such as eye tracking have not gained traction in evaluating health apps. Further research is needed into which methods are best suited for the different types of eHealth applications, according to their target users and the health conditions being addressed.
Electronic Mentoring Programs and Interventions for Children and Youth With Disabilities: Systematic Review.
Lindsay Sally,Kolne Kendall,Cagliostro Elaine
JMIR pediatrics and parenting
BACKGROUND:Children and youth with disabilities experience many challenges in their development, including higher risk of poor self-esteem, fewer friendships, and social isolation. Electronic mentoring is a potentially viable approach for youth with disabilities to access social and peer support within a format that reduces physical barriers to accessing mentors. OBJECTIVE:Our objective was to synthesize and review the literature on the impact of electronic mentoring for children and youth with disabilities. METHODS:We conducted a systematic review, completing comprehensive searches of 7 databases from 1993 to May 2018. We selected articles for inclusion that were peer-reviewed publications, had a sample of children or youth with disabilities (≤25 years of age), and had empirical findings with at least one outcome focusing on the impact of electronic mentoring. Two reviewers independently applied the inclusion criteria, extracted the data, and rated the study quality before discussing the findings. RESULTS:In the 25 studies meeting our inclusion criteria, 897 participants (aged 12-26, mean 17.4 years) were represented across 6 countries. Although the outcomes varied across the studies, of 11 studies testing significance, 9 (81%) reported a significant improvement in at least one of the following: career decision making, self-determination, self-advocacy, self-confidence, self-management, social skills, attitude toward disability, and coping with daily life. The electronic mentoring interventions varied in their delivery format and involved 1 or more of the following: interactive websites, virtual environment, email, mobile apps, Skype video calls, and phone calls. A total of 13 studies involved one-to-one mentoring, 6 had group-based mentoring, and 6 had a combination of both. CONCLUSIONS:The evidence in this review suggests it is possible that electronic mentoring is effective for children and youth with disabilities. More rigorously designed studies are needed to understand the impact and effective components of electronic mentoring interventions.
Using an mHealth App to Transition Care of Type 1 Diabetes from Parents to Teens: Protocol for a Pilot Study.
Holtz Bree E,Mitchell Katharine M,Hershey Denise D,Cotten Shelia R,Holmstrom Amanda J,Richman Joshua,Dunneback Julie K,Wood Michael A
JMIR research protocols
BACKGROUND:Type 1 diabetes mellitus (T1DM) afflicts approximately 154,000 people under the age of 20 in the United States. Most people with T1DM are diagnosed at a young age, and parents have to take on the responsibility of T1DM management. Eventually, the child must begin to transition to self-management. Adolescents often struggle to take on responsibility for all the necessary tasks to successfully self-manage their T1DM. In fact, approximately three-quarters of adolescents are not achieving American Diabetes Association-recommended glycated hemoglobin (HbA) targets. This lack of adherence can lead to negative health outcomes. OBJECTIVE:The goals of this interdisciplinary proposal are as follows: (1) to develop a unique and theory-driven technology using a mobile phone app to promote self-management behaviors for adolescents aged 10-15 years with T1DM and their parents and (2) to explore the feasibility and impact of the self-management mobile app. METHODS:This study has two phases: app development and pilot testing. In the app development phase, the app will be conceptualized and a prototype will be tested. In Phase 2, the mobile app will undergo pilot testing to determine its feasibility and impact on diabetes self-management. RESULTS:The pilot test was launched in September 2017. Data collection for the final pilot test is underway, and results are forthcoming. CONCLUSIONS:Adolescents with T1DM and their parents can have a difficult time managing the transition of diabetes care. It is hoped that this app can help. The focus groups and prototype testing have indicated promising outcomes of app use. TRIAL REGISTRATION:ClinicalTrials.gov NCT03436628; https://clinicaltrials.gov/ct2/show/NCT03436628 (Archived by WebCite at http://www.webcitation.org/72tHXTE2Z). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/10803.
Real-world evaluation of a mobile health application in children with asthma.
Stukus David R,Farooqui Nabeel,Strothman Kasey,Ryan Kelsey,Zhao Songzhu,Stevens Jack H,Cohen Daniel M
Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology
BACKGROUND:Mobile health applications for asthma are increasingly being developed. However, there are no published randomized controlled trials evaluating efficacy in decreasing exacerbations. OBJECTIVE:To evaluate the impact of a mobile asthma application for asthma-related urgent health care usage. METHODS:We conducted a 6-month prospective randomized controlled trial for patients (6 months-21 years old) with persistent asthma presenting with an asthma exacerbation to the emergency department of a pediatric academic medical center. Participants were randomized to AsthmaCare (application providing medication and trigger reminders and treatment plan) or the control (online asthma information). Primary outcome measures were comparison of emergency department and urgent care visits and hospitalizations 6 months before and after randomization. RESULTS:AsthmaCare participants (n = 98) were slightly older (7.84 vs 6.24 years; P = .02) than controls (n = 95) but similar for sex (55% vs 62% boys), race (83% vs 77% African American), and insurer (89% vs 98% Medicaid). The 2 groups were similar in having more than 2 comorbidities (34% vs 32%) and receiving National Heart, Lung, and Blood Institute step 3 treatment or higher (69% vs 57%). There was no significant decrease in emergency department or urgent care visits or hospitalizations between the intervention and control groups. AsthmaCare participants were more likely to report improvement in asthma management 6 months after study enrollment (79% vs 64%; P = .06). CONCLUSION:This randomized controlled trial did not demonstrate a significant decrease in asthma-related emergency department visits or hospitalizations among children who used a mobile health application. TRIAL REGISTRATION:ClinicalTrials.gov, Identifier NCT02333630.
Barriers and Facilitators When Implementing Web-Based Disease Monitoring and Management as a Substitution for Regular Outpatient Care in Pediatric Asthma: Qualitative Survey Study.
van den Wijngaart Lara S,Geense Wytske W,Boehmer Annemie Lm,Brouwer Marianne L,Hugen Cindy Ac,van Ewijk Bart E,Koenen-Jacobs Marie-José,Landstra Anneke M,Niers Laetitia Em,van Onzenoort-Bokken Lonneke,Ottink Mark D,Rikkers-Mutsaerts Eleonora Rvm,Groothuis Iris,Vaessen-Verberne Anja A,Roukema Jolt,Merkus Peter Jfm
Journal of medical Internet research
BACKGROUND:Despite their potential benefits, many electronic health (eHealth) innovations evaluated in major studies fail to integrate into organizational routines, and the implementation of these innovations remains problematic. OBJECTIVE:The purpose of this study was to describe health care professionals' self-identified perceived barriers and facilitators for the implementation of a Web-based portal to monitor asthmatic children as a substitution for routine outpatient care. Also, we assessed patients' (or their parents) satisfaction with this eHealth innovation. METHODS:Between April and November 2015, we recruited 76 health care professionals (from 14 hospitals). During a period of 6 months, participants received 3 questionnaires to identify factors that facilitated or impeded the use of this eHealth innovation. Questionnaires for patients (or parents) were completed after the 6-month virtual asthma clinic (VAC) implementation period. RESULTS:Major perceived barriers included concerns about the lack of structural financial reimbursement for Web-based monitoring, lack of integration of this eHealth innovation with electronic medical records, the burden of Web-based portal use on clinician workload, and altered patient-professional relationship (due to fewer face-to-face contacts). Major perceived facilitators included enthusiastic and active initiators, a positive attitude of professionals toward eHealth, the possibility to tailor care to individual patients ("personalized eHealth"), easily deliverable care according to current guidelines using the VAC, and long-term profit and efficiency. CONCLUSIONS:The implementation of Web-based disease monitoring and management in children is complex and dynamic and is influenced by multiple factors at the levels of the innovation itself, individual professionals, patients, social context, organizational context, and economic and political context. Understanding and defining the barriers and facilitators that influence the context is crucial for the successful implementation and sustainability of eHealth innovations.
Information technology implementing globalization on strategies for quality care provided to children submitted to cardiac surgery: International Quality Improvement Collaborative Program--IQIC.
Sciarra Adilia Maria Pires,Croti Ulisses Alexandre,Batigalia Fernando
Revista brasileira de cirurgia cardiovascular : orgao oficial da Sociedade Brasileira de Cirurgia Cardiovascular
INTRODUCTION:Congenital heart diseases are the world's most common major birth defect, affecting one in every 120 children. Ninety percent of these children are born in areas where appropriate medical care is inadequate or unavailable. OBJECTIVE:To share knowledge and experience between an international center of excellence in pediatric cardiac surgery and a related program in Brazil. METHODS:The strategy used by the program was based on long-term technological and educational support models used in that center, contributing to the creation and implementation of new programs. The Telemedicine platform was used for real-time monthly broadcast of themes. A chat software was used for interaction between participating members and the group from the center of excellence. RESULTS:Professionals specialized in care provided to the mentioned population had the opportunity to share to the knowledge conveyed. CONCLUSION:It was possible to observe that the technological resources that implement the globalization of human knowledge were effective in the dissemination and improvement of the team regarding the care provided to children with congenital heart diseases.
Adoption of a Portal for the Primary Care Management of Pediatric Asthma: A Mixed-Methods Implementation Study.
Fiks Alexander G,DuRivage Nathalie,Mayne Stephanie L,Finch Stacia,Ross Michelle E,Giacomini Kelli,Suh Andrew,McCarn Banita,Brandt Elias,Karavite Dean,Staton Elizabeth W,Shone Laura P,McGoldrick Valerie,Noonan Kathleen,Miller Dorothy,Lehmann Christoph U,Pace Wilson D,Grundmeier Robert W
Journal of medical Internet research
BACKGROUND:Patient portals may improve communication between families of children with asthma and their primary care providers and improve outcomes. However, the feasibility of using portals to collect patient-reported outcomes from families and the barriers and facilitators of portal implementation across diverse pediatric primary care settings have not been established. OBJECTIVE:We evaluated the feasibility of using a patient portal for pediatric asthma in primary care, its impact on management, and barriers and facilitators of implementation success. METHODS:We conducted a mixed-methods implementation study in 20 practices (11 states). Using the portal, parents of children with asthma aged 6-12 years completed monthly surveys to communicate treatment concerns, treatment goals, symptom control, medication use, and side effects. We used logistic regression to evaluate the association of portal use with child characteristics and changes to asthma management. Ten clinician focus groups and 22 semistructured parent interviews explored barriers and facilitators of use in the context of an evidence-based implementation framework. RESULTS:We invited 9133 families to enroll and 237 (2.59%) used the portal (range by practice, 0.6%-13.6%). Children of parents or guardians who used the portal were significantly more likely than nonusers to be aged 6-9 years (vs 10-12, P=.02), have mild or moderate/severe persistent asthma (P=.009 and P=.04), have a prescription of a controller medication (P<.001), and have private insurance (P=.002). Portal users with uncontrolled asthma had significantly more medication changes and primary care asthma visits after using the portal relative to the year earlier (increases of 14% and 16%, respectively). Qualitative results revealed the importance of practice organization (coordinated workflows) as well as family (asthma severity) and innovation (facilitated communication and ease of use) characteristics for implementation success. CONCLUSIONS:Although use was associated with higher treatment engagement, our results suggest that achieving widespread portal adoption is unlikely in the short term. Implementation efforts should include workflow redesign and prioritize enrollment of symptomatic children. CLINICALTRIAL:Clinicaltrials.gov NCT01966068; https://clinicaltrials.gov/ct2/show/NCT01966068 (Archived by WebCite at http://www.webcitation.org/6i9iSQkm3).
The PAediatric Risk Assessment (PARA) Mobile App to Reduce Postdischarge Child Mortality: Design, Usability, and Feasibility for Health Care Workers in Uganda.
English Lauren Lacey,Dunsmuir Dustin,Kumbakumba Elias,Ansermino John Mark,Larson Charles P,Lester Richard,Barigye Celestine,Ndamira Andrew,Kabakyenga Jerome,Wiens Matthew O
JMIR mHealth and uHealth
BACKGROUND:Postdischarge death in children is increasingly being recognized as a major contributor to overall child mortality. The PAediatric Risk Assessment (PARA) app is an mHealth tool developed to aid health care workers in resource-limited settings such as Sub-Saharan Africa to identify pediatric patients at high risk of both in-hospital and postdischarge mortality. The intended users of the PARA app are health care workers (ie, nurses, doctors, and clinical officers) with varying levels of education and technological exposure, making testing of this clinical tool critical to successful implementation. OBJECTIVE:Our aim was to summarize the usability evaluation of the PARA app among target users, which consists of assessing the ease of use, functionality, and navigation of the interfaces and then iteratively improving the design of this clinical tool. METHODS:Health care workers (N=30) were recruited to participate at Mbarara Regional Referral Hospital and Holy Innocents Children's Hospital in Mbarara, Southwestern Uganda. This usability study was conducted in two phases to allow for iterative improvement and testing of the interfaces. The PARA app was evaluated using quantitative and qualitative measures, which were compared between Phases 1 and 2 of the study. Participants were given two patient scenarios that listed hypothetical information (ie, demographic, social, and clinical data) to be entered into the app and to determine the patient's risk of in-hospital and postdischarge mortality. Time-to-completion and user errors were recorded for each participant while using the app. A modified computer system usability questionnaire was utilized at the end of each session to elicit user satisfaction with the PARA app and obtain suggestions for future improvements. RESULTS:The average time to complete the PARA app decreased by 30% from Phase 1 to Phase 2, following user feedback and modifications. Participants spent the longest amount of time on the oxygen saturation interface, but modifications following Phase 1 cut this time by half. The average time-to-completion (during Phase 2) for doctors/medical students was 3 minutes 56 seconds. All participants agreed they would use the PARA app if available at their health facility. Given a high PARA risk score, participants suggested several interventions that would be appropriate for the sociocultural context in southwestern Uganda, which involved strengthening discharge and referral procedures within the current health care system. CONCLUSIONS:Through feedback and modifications made during this usability study, the PARA app was developed into a user-friendly app, encompassing user expectations and culturally intuitive interfaces for users with a range of technological exposure. Doctors and medical students had shorter task completion times, though all participants reported the usefulness of this tool to improve postdischarge outcomes.
Using telemedicine in the care of newborn infants after discharge from a neonatal intensive care unit reduced the need of hospital visits.
Robinson Charlotta,Gund Anna,Sjöqvist Bengt-Arne,Bry Kristina
Acta paediatrica (Oslo, Norway : 1992)
AIM:This study examined the use of telemedicine as a means to follow up infants discharged from a Swedish neonatal intensive care unit to home health care. METHODS:Families were randomised to either a control group receiving standard home health care (n = 42 families) or a telemedicine group receiving home health care with telemedicine support (n = 47 families) after discharge from the hospital. Both groups had follow-up hospital appointments with the neonatal nurse. In the telemedicine group, appointments were supplemented by the use of a specially designed web page and video calls. RESULTS:The use of the web page and video calls decreased the number of emergency visits to the hospital (p = 0.047). In the telemedicine group, 26% of the families felt they had more scheduled appointments than necessary, whereas only 6% of the families in the control group thought so (p = 0.037). The parents were highly satisfied with the use of telemedicine. Although the nurses were favourable to using telemedicine, the rigid organisation of the home healthcare programme and the nurses' schedules and work routines prevented its optimal use. CONCLUSION:The use of telemedicine decreased the need of hospital visits. Organisational adaptations would be necessary to make the best use of telemedicine.
A randomized controlled study about the use of eHealth in the home health care of premature infants.
Gund Anna,Sjöqvist Bengt Arne,Wigert Helena,Hentz Elisabet,Lindecrantz Kaj,Bry Kristina
BMC medical informatics and decision making
BACKGROUND:One area where the use of information and communication technology (ICT), or eHealth, could be developed is the home health care of premature infants. The aim of this randomized controlled study was to investigate whether the use of video conferencing or a web application improves parents' satisfaction in taking care of a premature infant at home and decreases the need of home visits. In addition, nurses' attitudes regarding the use of these tools were examined. METHOD:Thirty-four families were randomized to one of three groups before their premature infant was discharged from the hospital to home health care: a control group receiving standard home health care (13 families); a web group receiving home health care supplemented with the use of a web application (12 families); a video group with home health care supplemented with video conferencing using Skype (9 families). Families and nursing staff answered questionnaires about the usefulness of ICT. In addition, semi-structured interviews were conducted with 16 families. RESULTS:All the parents in the web group found the web application easy to use. 83% of the families thought it was good to have access to their child's data through the application. All the families in the video group found Skype easy to use and were satisfied with the video calls. 88% of the families thought that video calls were better than ordinary phone calls. 33% of the families in the web group and 75% of those in the video group thought the need for home visits was decreased by the web application or Skype. 50% of the families in the web group and 100% of those in the video group thought the web application or the video calls had helped them feel more confident in caring for their child. Most of the nurses were motivated to use ICT but some were reluctant and avoided using the web application and video conferencing. CONCLUSION:The families were satisfied with both the web application and video conferencing. The families readily embraced the use of ICT, whereas motivating some of the nurses to accept and use ICT was a major challenge.
Teletherapy delivery of caregiver behavior training for children with attention-deficit hyperactivity disorder.
Tse Yuet Juhn,McCarty Carolyn A,Stoep Ann Vander,Myers Kathleen M
Telemedicine journal and e-health : the official journal of the American Telemedicine Association
BACKGROUND:Preliminary studies suggest that videoteleconferencing (VTC) may be an effective means to deliver behavioral interventions to families. Subjects consisted of a subsample of children (n=37) and caregivers who participated in the Children's Attention-Deficit Hyperactivity Disorder (ADHD) Telemental Health Treatment Study (CATTS) (n=223), a randomized trial testing the effectiveness of delivering treatments for ADHD to families residing in their home communities using distant technologies. Families randomized to the CATTS intervention arm received pharmacotherapy and caregiver behavior training. MATERIALS AND METHODS:Thirty-seven families from the CATTS intervention arm participated. All families received pharmacotherapy through VTC. Twelve families received the caregiver behavior training through VTC, or teletherapy, and 25 received the intervention in-person. We assessed children's outcomes at 25 weeks with the Vanderbilt ADHD Parent Rating Scale and the Columbia Impairment Scale. We assessed caregivers' outcomes using measures of distress in caring for a child with ADHD, including depression, stress, strain, and empowerment. We used analysis of covariance to assess outcomes from baseline to 25 weeks. RESULTS:Families in the two conditions showed comparable attendance at sessions and satisfaction with their care. Caregivers in both conditions reported comparable outcomes for their children's ADHD-related behaviors and functioning, but caregivers in the teletherapy group did not report improvement in their own distress. CONCLUSIONS:Findings support the feasibility, acceptability, and effectiveness of treating children with ADHD through teletherapy. Future work should investigate how teletherapy may improve caregivers' distress. Teletherapy is a promising modality for delivering behavioral interventions for children with ADHD.
Effects of using WeChat-assisted perioperative care instructions for parents of pediatric patients undergoing day surgery for herniorrhaphy.
Liu Jun,Zheng Xin,Chai Shouxia,Lei Meirong,Feng Zehui,Zhang Xuelin,Lopez Violeta
Patient education and counseling
OBJECTIVE:This study examined the effects of WeChat-assisted perioperative instructions for parents whose children were to undergo herniorrhaphy. METHOD:A randomized controlled trial was conducted in a day surgery center in China. Participants were randomly assigned to the intervention (WeChat) group (n = 209) and the control (Leaflet) group (n = 209). The primary outcomes of this study were parents' knowledge regarding hernia and rate of cancellation of children's surgery. The secondary outcomes were the rate of lost-to-follow-up and the rate of complications and adverse events during the seventh postoperative follow-up day. RESULTS:There was a significant difference in the rate of cancelling the surgery and the mean knowledge score between the WeChat group and leaflet groups. The lost-to-follow-up rate was significantly lower in the WeChat group (0.54%) than in the leaflet group (3.66%). The incidence of postoperative complications were higher in the control group. CONCLUSIONS:WeChat-assisted perioperative care instructions enhanced parents' knowledge on perioperative instructions and promoted the preparation of their children for day surgery resulting in lower rate of cancelling the surgery. PRACTICE IMPLICATIONS:WeChat has the ability to expand health services outside the hospital confines and could be used as an important low-cost health educational medium in China.
mPneumonia: Development of an Innovative mHealth Application for Diagnosing and Treating Childhood Pneumonia and Other Childhood Illnesses in Low-Resource Settings.
Ginsburg Amy Sarah,Delarosa Jaclyn,Brunette Waylon,Levari Shahar,Sundt Mitch,Larson Clarice,Tawiah Agyemang Charlotte,Newton Sam,Borriello Gaetano,Anderson Richard
Pneumonia is the leading infectious cause of death in children worldwide. Each year, pneumonia kills an estimated 935,000 children under five years of age, with most of these deaths occurring in developing countries. The current approach for pneumonia diagnosis in low-resource settings--using the World Health Organization Integrated Management of Childhood Illness (IMCI) paper-based protocols and relying on a health care provider's ability to manually count respiratory rate--has proven inadequate. Furthermore, hypoxemia--a diagnostic indicator of the presence and severity of pneumonia often associated with an increased risk of death--is not assessed because pulse oximetry is frequently not available in low-resource settings. In an effort to address childhood pneumonia mortality and improve frontline health care providers' ability to diagnose, classify, and manage pneumonia and other childhood illnesses, PATH collaborated with the University of Washington to develop "mPneumonia," an innovative mobile health application using an Android tablet. mPneumonia integrates a digital version of the IMCI algorithm with a software-based breath counter and a pediatric pulse oximeter. We conducted a design-stage usability field test of mPneumonia in Ghana, with the goal of creating a user-friendly diagnostic and management tool for childhood pneumonia and other childhood illnesses that would improve diagnostic accuracy and facilitate adherence by health care providers to established guidelines in low-resource settings. The results of the field test provided valuable information for understanding the usability and acceptability of mPneumonia among health care providers, and identifying approaches to iterate and improve. This critical feedback helped ascertain the common failure modes related to the user interface design, navigation, and accessibility of mPneumonia and the modifications required to improve user experience and create a tool aimed at decreasing mortality from pneumonia and other childhood illnesses in low-resource settings.
Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial.
Boogerd Emiel,Maas-Van Schaaijk Nienke M,Sas Theo C,Clement-de Boers Agnes,Smallenbroek Mischa,Nuboer Roos,Noordam Cees,Verhaak Chris M
Journal of medical Internet research
BACKGROUND:Raising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information. OBJECTIVE:The first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D. The second aim was to assess the feasibility of implementing Sugarsquare in clinical practice. METHODS:The parents of 105 children (N=105) with T1D below the age of 13 participated in a 6-month multicenter randomized controlled feasibility trial. They were randomly assigned to an experimental (n=54, usual care and Sugarsquare) or a control group (n=51, usual care). Attrition rates and user statistics were gathered to evaluate feasibility of the trial and implementation. To determine potential efficacy, the parenting stress index (PSI-SF) was assessed at baseline (T0) and after 6 months (T1). RESULTS:Of a potential population of parents of 445 children, 189 were willing to participate (enrollment refusal=57.5%, n=256), 142 filled in the baseline questionnaire (baseline attrition rate=25%, n=47), and 105 also filled in the questionnaire at T1 (post randomization attrition rate during follow-up=26%, n=32). As such, 24% of the potential population participated. Analysis in the experimental group (n=54) revealed a total of 32 (59%) unique users, divided into 12 (38%) frequent users, 9 (28%) incidental users, and 11 (34%) low-frequent users. Of the total of 44 professionals, 34 (77%) logged in, and 32 (73%) logged in repeatedly. Analysis of the user statistics in the experimental group further showed high practicability and integration in all users, moderate acceptability and demand in parents, and high acceptability and demand in health care professionals. Baseline parenting stress index scores were related to the parents' frequency of logging on (ρ=.282, P=.03) and page-views (ρ=.304, P=.01). No significant differences in change in parenting stress between experimental and control group were found (F=.49, P=.49). CONCLUSIONS:The trial can be considered feasible, considering the average enrollment refusal rate, baseline attrition rate and postrandomization attrition rate, compared to other eHealth studies, although lower than hypothesized. Implementing Sugarsquare in clinical practice was partly feasible, given moderate demand and acceptability in parent users and lack of potential efficacy. Parents who reported higher levels of parenting stress used Sugarsquare more often than other parents, although Sugarsquare did not reduce parenting stress. These results indicate that Web-based interventions are a suitable way of providing parents of children with T1D with additional support. Future studies should determine how Sugarsquare could reduce parenting stress, for instance by adding targeted interventions. Factors potentially contributing to successful implementation are suggested. TRIAL REGISTRATION:Nederlands Trial Register Number: NTR3643; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3643 (Archived by WebCite at http://www.webcitation.org/6qihOVCi6).
Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study.
Longacre Meghan,Grande Stuart,Hager Andreas,Montan Meera,Bergquist Rikard Palmer,Martensson Maria,Kotzbauer Greg
JMIR pediatrics and parenting
BACKGROUND:Mobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Barriers to implementation include the lack of support and infrastructure to use mHealth in the clinical microsystem. Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting. OBJECTIVE:This study explored the development, adoption, and integration of a new, co-produced mHealth platform (Genia) for the management of pediatric CF in Sweden. METHODS:A retrospective, qualitative case study approach was used. The case was defined as the process of introducing and using Genia at the Pediatric Cystic Fibrosis Center at Skåne University Hospital in Lund, Sweden. Data sources included interviews, presentations, meeting notes, and other archival documents created between 2014 and 2017. To be included, data sources must have described or reflected upon the Genia adoption process. Iterative content analysis of data source materials was conducted by 2 qualitatively trained researchers to derive themes characterizing the mHealth clinical adoption process. RESULTS:In total, 4 core themes characterized successful clinical integration of Genia in Lund: cultural readiness to use mHealth; use of weekly huddles to foster momentum and rapid iteration; engagement in incremental "Genia Talk" to motivate patient adoption; and co-design approach toward pediatric chronic care. CONCLUSIONS:Principles of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of mHealth technology into clinical care systems for pediatric CF care.
Design and evaluation of the StartingTogether App for home visits in preventive child health care.
Blanson Henkemans Olivier Anne,Keij Marjolein,Grootjen Marc,Kamphuis Mascha,Dijkshoorn Anna
Background:The StartingTogether program (in Dutch SamenStarten) is a family-centred method for early identification of social-emotional and behavioural problems in young children. Nurses in preventive child health care find it challenging to: determine family issues and need for care; provide education; refer to social services; increase parent empowerment. To mitigate these challenges, we developed and evaluated the StartingTogether App, offering nurses and parents conversational support, tailored education and information on social services. Methods:A mixed method design, consisting of a qualitative evaluation of the StartingTogether App, with group discussions with nurses ( = 14) and a pilot test ( = 5), and a randomized controlled trial, evaluating the effectiveness of the app. Nurses ( = 33) made home visits to parents ( = 194), in teams with or without the app. Nurses were surveyed on the challenges experienced during visits. Parents ( = 166) were surveyed on their satisfaction with health care and app. Nurses were interviewed on the benefits and barriers to use the app. Results:Parents with the StartingTogether App were more satisfied with the visits than parents without ( = .002). Parents with a high educational level were more satisfied with the visits than the parents with a low educational level. With the app, their satisfaction level was similar ( < .001). Nurses using the app felt more equipped to communicate with parents ( = .012) and experienced that parents were more knowledgeable and skilled ( = .001). Parents felt that with the app the nurse was more polite ( = .02), listened more carefully ( = .03), and had more time ( = .02). Nurses with the app gave parents more opportunity to ask questions ( = .001) and gave clearer answers ( < .001). The qualitative evaluation indicated that some nurses needed extra time to develop the habit of using the app. Conclusions:The StartingTogether App contributes to parents' satisfaction with home visits. An interaction effect between parents' educational level and rating of home visits indicated that the app has an additional value for parents with a lower educational level. Applying mobile applications, such as the StartingTogether App, potentially has a positive effect on communication between nurses and parents about the family situation in relation to parent empowerment and the child's development. Trial registration:The study is registered with ISRCTN under the number ISRCTN12491485, on August 23, 2018. Retrospectively registered.
Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study.
McWilliams Andrew,Reeves Kelly,Shade Lindsay,Burton Elizabeth,Tapp Hazel,Courtlandt Cheryl,Gunter Andrew,Dulin Michael F
JMIR mHealth and uHealth
BACKGROUND:Asthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design. OBJECTIVE:To describe a case study of a pediatric asthma SDM health IT solution's development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team. METHODS:We adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) "real-world users" consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics. RESULTS:Using this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app. CONCLUSIONS:This project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process.
An Analytics Platform to Evaluate Effective Engagement With Pediatric Mobile Health Apps: Design, Development, and Formative Evaluation.
Pham Quynh,Graham Gary,Lalloo Chitra,Morita Plinio P,Seto Emily,Stinson Jennifer N,Cafazzo Joseph A
JMIR mHealth and uHealth
BACKGROUND:Mobile health (mHealth) apps for pediatric chronic conditions are growing in availability and challenge investigators to conduct rigorous evaluations that keep pace with mHealth innovation. Traditional research methods are poorly suited to operationalize the agile, iterative trials required to evidence and optimize these digitally mediated interventions. OBJECTIVE:We sought to contribute a resource to support the quantification, analysis, and visualization of analytic indicators of effective engagement with mHealth apps for chronic conditions. METHODS:We applied user-centered design methods to design and develop an Analytics Platform to Evaluate Effective Engagement (APEEE) with consumer mHealth apps for chronic conditions and implemented the platform to analyze both retrospective and prospective data generated from a smartphone-based pain self-management app called iCanCope for young people with chronic pain. RESULTS:Through APEEE, we were able to automate the process of defining, operationalizing, and evaluating effective engagement with iCanCope. Configuring the platform to integrate with the app was feasible and provided investigators with a resource to consolidate, analyze, and visualize engagement data generated by participants in real time. Preliminary efforts to evaluate APEEE showed that investigators perceived the platform to be an acceptable evaluative resource and were satisfied with its design, functionality, and performance. Investigators saw potential in APEEE to accelerate and augment evidence generation and expressed enthusiasm for adopting the platform to support their evaluative practice once fully implemented. CONCLUSIONS:Dynamic, real-time analytic platforms may provide investigators with a powerful means to characterize the breadth and depth of mHealth app engagement required to achieve intended health outcomes. Successful implementation of APEEE into evaluative practice may contribute to the realization of effective and evidence-based mHealth care.
The feasibility of text reminders to improve medication adherence in adolescents with asthma.
Johnson Kevin B,Patterson Barron L,Ho Yun-Xian,Chen Qingxia,Nian Hui,Davison Coda L,Slagle Jason,Mulvaney Shelagh A
Journal of the American Medical Informatics Association : JAMIA
OBJECTIVE:Personal health applications have the potential to help patients with chronic disease by improving medication adherence, self-efficacy, and quality of life. The goal of this study was to assess the impact of MyMediHealth (MMH) - a website and a short messaging service (SMS)-based reminder system - on medication adherence and perceived self-efficacy in adolescents with asthma. METHODS:We conducted a block-randomized controlled study in academic pediatric outpatient settings. There were 98 adolescents enrolled. Subjects who were randomized to use MMH were asked to create a medication schedule and receive SMS reminders at designated medication administration times for 3 weeks. Control subjects received action lists as a part of their usual care. Primary outcome measures included MMH usage patterns and self-reports of system usability, medication adherence, asthma control, self-efficacy, and quality of life. RESULTS:Eighty-nine subjects completed the study, of whom 46 were randomized to the intervention arm. Compared to controls, we found improvements in self-reported medication adherence (P = .011), quality of life (P = .037), and self-efficacy (P = .016). Subjects reported high satisfaction with MMH; however, the level of system usage varied widely, with lower use among African American patients. CONCLUSIONS:MMH was associated with improved medication adherence, perceived quality of life, and self-efficacy.Trial Registration This project was registered under http://clinicaltrials.gov/ identifier NCT01730235.
Clinic Personnel, Facilitator, and Parent Perspectives of eHealth Familias Unidas in Primary Care.
Molleda Lourdes,Bahamon Monica,St George Sara M,Perrino Tatiana,Estrada Yannine,Correa Herrera Deborah,Pantin Hilda,Prado Guillermo
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
INTRODUCTION:The purpose of this qualitative study was to understand the feasibility and acceptability of implementing eHealth Familias Unidas, an Internet-based, family-based, preventive intervention for Hispanic adolescents, in primary care. METHODS:Semistructured individual interviews with clinic personnel and facilitators (i.e., physicians, nurse practitioners, administrators, and mental health workers; n = 9) and one focus group with parents (n = 6) were audiorecorded, transcribed verbatim, and analyzed using a general inductive approach. RESULTS:Nine major themes emerged, including recommendations to minimize disruption to clinic flow, improve collaboration and training of clinic personnel and the research team, promote the clinic as a trusted setting for improving children's behavioral health, and highlight the flexibility and convenience of the eHealth format. DISCUSSION:This study provides feasibility and acceptability findings, along with important considerations for researchers and primary care personnel interested in collaborating to implement an eHealth preventive intervention in pediatric primary care.
Health-Related Quality of Life Outcomes of a Telehealth Care Coordination Intervention for Children With Medical Complexity: A Randomized Controlled Trial.
Looman Wendy S,Hullsiek Robyn L,Pryor Lyndsay,Mathiason Michelle A,Finkelstein Stanley M
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
The purpose of this study was to explore health-related quality of life (HRQL) and family impact in the context of an advanced practice registered nurse-delivered telehealth care coordination intervention for children with medical complexity (CMC). This was a secondary outcomes analysis of a randomized controlled trial with 163 families of CMC in an existing medical home. HRQL and family impact were measured using the PedsQL measurement model. Bivariate and analysis of covariance analyses were conducted to explore associations at baseline and the intervention effect over 2 years. Significant predictors of Year 2 child HRQL were baseline HRQL and the presence of both neurologic impairment and technology dependence. There was no significant intervention effect on child HRQL or family impact after 24 months. Care coordination interventions for CMC may need to incorporate family system interventions for optimal outcomes in a range of quality of life domains.
Improving pediatric Inflammatory Bowel Disease (IBD) follow-up.
Dykes Dana,Williams Elizabeth,Margolis Peter,Ruschman Jennifer,Bick Julianne,Saeed Shehzad,Opipari Lisa
BMJ quality improvement reports
Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice's ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes. Telemedicine provides an alternative method of care delivery to address these gaps, but has had limited use in patients with IBD. A multi-step approach to offer alternative follow-up care options via telemedicine was developed with potential impact on remission rates and quality of life. Short term goals of the pilot were to improve telemedicine access for patients with IBD were to 1) increase the percent of patients with active disease with a follow-up completed within two months of a visit from 40% to 70%, 2) increase the percent of patients with a visit scheduled within two months of their last sick visit from 20% to 70% (interim measure), 3) increase the number of eVisits from zero visits per month to two visits per month during pilot phase, 4) increase electronic communication with patients from zero messages per month to 200 messages per month, 5) no change in complications or adverse events (defined as an unplanned visit or ED (emergency department) encounter within 30 days of an eVisit. The expected outcomes of the e-visit model were to: maintain baseline care standards and health screening capabilities, improve access to care, and provide equivalent care delivery (no increase in the number of unplanned clinical encounters). Using the IHI model for improvement (Plan-Do-Study-Act) we have seen a progressive increase in the rate of patient signups for the electronic medical record patient portal, with a baseline median of 20% per clinic compared with a current median of approximately 70% after six months. We successfully implemented e-messaging in its pilot form among five providers and have seen steady uptake in patient use from 5 patient initiated messages during the first month to 76 messages/month over the past three months. E-visits have replaced a total of 32 visits to date. Medications, nutrition, and disease activity were appropriately screened and managed electronically without the need for a physical office visit by the treating gastroenterologist. Access to care was improved in that all patients completed their e-visits from their homes without missing school or work and did not require a physical office visit. One visit successfully identified worsening of the patient's clinical course and resulted in a scheduled office visit request, but no unplanned office visits or ED visits have occurred. This report represents the first description of telemedicine use in routine clinical care in children with IBD. We anticipate continuing use of this novel mode of health care delivery in pediatrics in an effort to increase the proportion of patients seen for interval follow-up, after IBD diagnosis, or mild flare in an effort to target early treatment changes that should result in improved remission and patient reported outcomes. E-visits are less expensive and time consuming than traditional visits and may serve as an additional method of cost savings by matching care to a patient's individual needs.
Understanding clinicians' attitudes toward a mobile health strategy to childhood asthma management: A qualitative study.
Hollenbach Jessica P,Cushing Anna,Melvin Emilie,McGowan Bryanna,Cloutier Michelle M,Manice Melissa
The Journal of asthma : official journal of the Association for the Care of Asthma
OBJECTIVES:Mobile technology for childhood asthma can provide real-time data to enhance care. What real-time adherence information clinicians want, how they may use it, and if the data meet their clinical needs have not been fully explored. Our goal was to determine whether pediatric primary care and pulmonary clinicians believe if a sensor-based mobile intervention is useful in caring for patients with asthma. METHODS:We recruited participants from 3 urban, primary care and 1 pulmonary practice from July to September 2015 in Hartford, CT. Forty-one participated in four focus groups, which included a demonstration of the technology. Participants were probed with open-ended questions on the type, frequency, and format of inter-visit patient information they found useful. RESULTS:41 participants (mean age 49 (±13.7) years) were board-certified clinicians (41% MDs and 20% mid-level practitioners), practiced medicine on an average of 19 (±14) years, were primarily white (59%) and women (78%). Clinicians wanted 1) adherence to prescribed inhaler therapy and 2) data on inhaler technique. Clinicians wanted it at the time of a scheduled clinic visit but also wanted inter-visit alerts for excessive use of rescue therapy. Pulmonologists liked the mobile spirometer's provision of inter-visit lung function data; pediatricians did not share this view. Concerns with data accuracy were raised due to families who shared inhalers, access to smartphones, and protection of health information. CONCLUSIONS:Overall, clinicians view an asthma mobile health technology as enhancing the patient-centered medical home. Pediatric primary care clinicians and pulmonologists want different information from a mobile app.
IIAM (important information about me): a patient portability profile app for adults, children and families with neurodevelopmental disabilities.
Jiam N T,Hoon A H,Hostetter C F,Khare M M
Disability and rehabilitation. Assistive technology
PURPOSE:To describe the development of important information about me (IIAM), an application (app) used to communicate and organize healthcare information for people with neurodevelopmental disabilities (NDD). METHODS:Prior to the development of IIAM version 1.0, households with NDD were selected to participate in a focus group. Respondents (n = 7) were parents of children with NDD. Participants were asked to use a beta version for at least 2 months in day-to-day applications and to complete a questionnaire at the end of the trial. RESULTS:Over half (57%) of the participants found the beta version to be useful. The greatest limitation in usability was the child's age and literacy level. All participants found the app to be visually appealing and easy to navigate. IIAM was commonly used to communicate information to caregivers, and to facilitate quality interactions between the child and others. CONCLUSION:Mobile technology has become ubiquitous and has emerged as an important tool in healthcare. New applications could potentially promote accessible, cost-effective and self-managed interventions for the disability community. IIAM is a user-friendly, well-accepted and useful app for people with NDD. The focus group feedback elicited from the beta testing was used to develop the IIAM app version 1.0. However, the sample size in this initial feasibility study is small, and warrants a prospective study that evaluates the overall benefits of this app in improving quality of life and helping individuals with developmental disabilities manage their day-to-day activities. Implications for Rehabilitation Mobile technology has been more ubiquitous in health care and has emerged as a tool in communicating healthcare needs. New applications could potentially promote accessible, cost-effective and self-managed interventions for the disability community. IIAM (important information about me) is a new iOS application that enables adults and children with neurodevelopmental disabilities to organize their medical records, advocate for their healthcare needs, and help overcome communication and time limitations with health professionals and caregivers.
Comparison of Telemedicine to Traditional Face-to-Face Care for Children with Special Needs: A Quasiexperimental Study.
Hooshmand Mary,Foronda Cynthia
Telemedicine journal and e-health : the official journal of the American Telemedicine Association
BACKGROUND:Services for Children with Special Healthcare Needs (CSHCN) have been challenging in terms of cost and access to appropriate healthcare services. OBJECTIVES:The objectives of this study were to examine cost, caring, and family-centered care in relationship to pediatric specialty services integrating telemedicine visits compared to traditional face-to-face visits only for (CSHCN) in rural, remote, and medically underserved areas. METHODS:This study used a prospective, quasiexperimental research design with 222 parents or legal guardians of CSHCN receiving pediatric specialty care. The traditional group (n = 110) included families receiving face-to-face pediatric specialty care and the telemedicine group (n = 112) included families who had telemedicine visits along with traditional face-to-face pediatric specialty care. RESULTS:Results indicated no significant differences in family costs when the telemedicine group was compared to traditional face-to-face care. When the telemedicine group was asked to anticipate costs if telemedicine was not available, there were significant differences found across all variables, including travel miles, cost of travel, missed work hours, wages lost, child care cost, lodging cost, other costs, and total family cost (p < 0.001). There were no differences in the families' perceptions of care as caring. Parents/guardians perceived the system of care as significantly more family-centered when using telemedicine (p = 0.003). CONCLUSIONS:The results of this study underscore the importance of facilitating access to pediatric specialty care by use of telemedicine. We endorse efforts to increase healthcare access and decrease cost for CSHCN by expanding telemedicine and shaping health policy accordingly.