Pilot evaluation of web enabled symptom monitoring in cystic fibrosis

Roehrer, Erin; Cummings, Elizabeth; Beggs, Sean; Turner, Paul; Hauser, Jenny; Micallef, Nicole; Ellis, Leonie; Reid, David W.

doi:10.3109/17538157.2013.812646

Cited by 23 publications

(12 citation statements)

References 5 publications

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“…This strongly supports the well-known fact that adolescents and young adults are particularly challenging to draw into clinical studies and to motivate for higher disease investment [5,7], the primary reason for our study. The reasons for this low motivation are most likely multifactorial and correspond to similar findings by others pertaining to CF patients [29], with the overall difficulty in motivation of this particular age group figuring prominently among possible causes [5], potentially even more pronounced in those affected by chronic diseases [4-6] because of a strong desire for normality [5,7]. Numerous competing studies, as well as numerous competing mHealth apps, might have also contributed.…”

Section: Discussionsupporting

confidence: 85%

Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

Rudolf¹,

Pieper²,

Nolte³

et al. 2019

JMIR Mhealth Uhealth

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BackgroundCystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the most important contributor to morbidity and mortality. Adherence is challenging in CF due to the high treatment burden and the lack of immediate health consequences in case of nonadherence. Lung function decline is particularly pronounced in the transition phase between 12 and 24 years of age. The improvement of self-management and self-responsibility and independence from parents and desire for normalcy are conflicting aspects for many adolescents with CF, which influence adherence to the time-consuming pulmonary therapy. Mobile health (mHealth) care apps could help to support self-management and independence and thereby reconcile seemingly conflicting goals to improve adherence, quality of life, and ultimately CF life expectancy.ObjectiveThis study aimed to (1) assess user behavior and satisfaction among adolescents and young adults with CF over an observation period of three months using an mHealth app; (2) identify areas of improvement for this mHealth app; and (3) compare overall and disease-specific satisfaction, lung function, and anthropometry before and after using the mHealth app.MethodsA total of 27 adolescents and young adults with CF (age range 12-24 years, mean age 16 years, SD 3 years; 14 females, 11 males) used a free mHealth app for three months of whom 25 provided questionnaire data for analysis at the end of the study. Data collection was carried out using questionnaires on usage characteristics and life satisfaction, and standardized assessment of lung function and anthropometry.ResultsThe use of the reminder function for medication declined from 70% (15/21) of the participants at week 4 to 65% (13/20) at week 8 of the observation period. At the end of the study, only 17% (4/23) of the participants wanted to continue using the app. Nevertheless, 56% (14/25) of participants saw the mobile app as a support for everyday life. Potential improvements targeting hedonistic qualities were identified to improve mHealth app adherence. Comparisons of satisfaction with different life aspects hinted at improvements or stabilization for the subitem respiration and the subitem lack of handicap by CF, suggesting that app use might stabilize certain CF-specific aspects of the weighted satisfaction with life. Lung function and anthropometry were not affected consistently.ConclusionsMost of the patients did not want to continue using the app after the study period. Only a few CF-specific aspects of weighted life satisfaction were possibly stabilized by the mHealth app; clinical parameters were not affected. Adaptation of the functions to adolescent-specific needs could improve the long-term use and thus positively affect the disease course.

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Section: Discussionsupporting

confidence: 85%

Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

Rudolf¹,

Pieper²,

Nolte³

et al. 2019

JMIR Mhealth Uhealth

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“…Information technology–mediated personalized Web apps can improve accessibility and exchangeability of information [ 12 , 13 ]. A personalized approach may address the individual biologic, physiologic, and social factors that are particularly important for the individual patient by addressing the different needs among patients and supporting self-care, which may have long-term effects [ 14 , 15 ]. As such, a Web app tailored to the patient’s profile can differentiate between several types of content (text, pictures, films, and print options) and Web designs.…”

Section: Introductionmentioning

confidence: 99%

Preferences for Web-Based Information Material for Low Back Pain: Qualitative Interview Study on People Consulting a General Practitioner

Riis¹,

Hjelmager²,

Vinther³

et al. 2018

JMIR Rehabil Assist Technol

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BackgroundInformation on self-management, including addressing people’s fears and concerns, are core aspects of managing patients with low back pain (LBP). Web apps with patient information may be used to extend patient-physician consultations and encourage self-management outside of the consultation room. It is, however, important to identify the end users’ needs and preferences in order to maximize acceptance.ObjectiveThe aim of this study was to identify preferences for the content, design, and functionality of a Web app with evidence-based information and advice for people with LBP in Denmark.MethodsThis is a phenomenological qualitative study. Adults who had consulted their general practitioner because of LBP within the past 14 days were included. Each participated in a semistructured interview, which was audiotaped and transcribed for text condensation. Interviews were conducted at the participant’s home by 2 interviewers. Participants also completed a questionnaire that requested information on age, gender, internet usage, interest in searching new knowledge, LBP-related function, and pain.ResultsFifteen 45-min interviews were conducted. Participants had a median age of 40 years (range 22-68 years) and reported a median disability of 7 points (range 0-18) using the 23-item Roland Morris Disability Questionnaire. Participants reported that Web-based information should be easy to find and read, easily overviewed, and not be overloaded with information. Subjects found existing Web-based information confusing, often difficult to comprehend, and not relevant for them, and they questioned the motives driving most hosting companies or organizations. The Patient Handbook, a Danish government-funded website that provides information to Danes about health, was mentioned as a trustworthy and preferred site when searching for information and advice regarding LBP.ConclusionsThis study identified important issues to consider when developing and supplementing existing general practice treatment with Web-based information and advice for patients with LBP. Development of a Web app should consider patient input, and developers should carefully address the following domains: readability, customization, design, credibility, and usability.

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“…Additional groups have integrating devices in the home to evaluate other aspects of CF care centered in Australia. [136][137][138] Despite encouraging results from earlier studies in CF, a large scale randomized controlled trial of home monitoring in the United States did not demonstrate clinical efficacy. 139 Adherence with the monitoring arm of the protocol in this trial was lower than desired, with only 19% of the participants in the intervention arm transmitting their home data twice weekly 80% of the time or greater for the year duration of the study.…”

Section: Use Of Home Monitoring For Exacerbationmentioning

confidence: 99%

Acute Pulmonary Exacerbations in Cystic Fibrosis

Goss

2019

Semin Respir Crit Care Med

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With the improving survival of cystic fibrosis (CF) patients and the advent of highly effective cystic fibrosis transmembrane conductance regulator therapy, the clinical spectrum of this complex multisystem disease continues to evolve. One of the most important clinical events for patients with CF in the course of this disease is an acute pulmonary exacerbation. Clinical and microbial epidemiology studies of CF pulmonary exacerbations continue to provide important insight into the disease course, prognosis, and complications. This work has now led to a number of large scale clinical trials with the goal of improving the treatment paradigm for CF pulmonary exacerbation. The primary goal of this review is to provide a summary of the pathophysiology, the clinical epidemiology, microbial epidemiology, outcome and the treatment of CF pulmonary exacerbation.

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Pilot evaluation of web enabled symptom monitoring in cystic fibrosis

Cited by 23 publications

References 5 publications

Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

Preferences for Web-Based Information Material for Low Back Pain: Qualitative Interview Study on People Consulting a General Practitioner

Acute Pulmonary Exacerbations in Cystic Fibrosis

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