This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
Two online self-management programs for patients with atopic dermatitis (AD) or food allergy (FA) were developed with the aim of helping patients cope with their condition, follow the prescribed treatment regimen, and deal with the consequences of their illness in daily life. Both programs consist of several modules containing information, personal stories by fellow patients, videos, and exercises with feedback. Health care professionals can refer their patients to the programs. However, the use of the program in daily practice is unknown.
The aim of this study was to explore the use and characteristics of users of the online self-management programs “Living with eczema,” and “Living with food allergy,” and to investigate factors related to the use of the trainings.
A cross-sectional design was carried out in which the outcome parameters were the number of log-ins by patients, the number of hits on the system’s core features, disease severity, quality of life, and domains of self-management. Descriptive statistics were used to summarize sample characteristics and to describe number of log-ins and hits per module and per functionality. Correlation and regression analyses were used to explore the relation between the number of log-ins and patient characteristics.
Since the start, 299 adult patients have been referred to the online AD program; 173 logged in for at least one occasion. Data from 75 AD patients were available for analyses. Mean number of log-ins was 3.1 (range 1-11). Linear regression with the number of log-ins as dependent variable showed that age and quality of life contributed most to the model, with betas of .35 (
The online self-management programs “Living with eczema” and “Living with food allergy” were used by patients in addition to the usual face-to-face care. Almost 60% of all referred patients logged in, with an average of three log-ins. All modules seemed to be relevant, but there is room for improvement in the use of the training. Age, quality of life, and lower social integration and support were related to the use of the training, but only part of the variance in use could be explained by these variables.
Atopy refers to the genetic tendency to develop allergic diseases such as atopic dermatitis (AD), allergic rhinitis, asthma or food allergy (FA). Allergic diseases are common in children in the age group up to twelve years; a study showed that at twelve years 58% of the children had AD, asthma, and/or rhinitis at some time [
Technological self-management systems for patients with chronic diseases can help them to understand and monitor their condition, and support patients in achieving behavioral change [
We previously developed two online self-management programs based on scientific guidelines and professional experience for patients with AD or FA. The programs were aimed at helping patients cope with their condition, follow the prescribed treatment and deal with the consequences of their illness in daily life. Both programs “Living with eczema” [
In 2010, a feasibility study of the self-management programs for adults took place to explore the usefulness and ease of use of the training. This was based on the Technology Acceptance Model (TAM) developed by Davis [
Therefore, the primary objective of this study was to explore the use and characteristics of adult visitors to the online self-management program “Living with eczema” and “Living with food allergy” in order to increase and optimize the use of the program in daily practice. The secondary objective was to investigate the factors related to the use of the program.
A cross-sectional research design was used to explore the use of two online self-management programs among patients with AD or FA. The measure of usage was the total number of log-ins in the study period. Data of usage was obtained during the patient’s use of the program and was embedded into the program design. Patients had access to the program for a three month period. The number of log-ins was measured for all participants of both programs, and the number of hits on the system’s core features was measured only among the participants who provided informed consent. To explore the patients’ characteristics a questionnaire-based online survey was conducted on a convenience sample of patients attending the online self-management programs. All patients who provided informed consent were included, and the questionnaires were incorporated at the start of the program.
Study population consisted of adult patients with FA or with AD who received an account for one of the online programs. To investigate patient characteristics, all patients who provided informed consent since the start of the programs were included. The gender of each patient and the health care provider who enrolled them in the program were registered, and from the start of the program the number of visits to the site was counted. To examine the usage of the program, patients were recruited from the participants of both online self-management programs between October 2012 and November 2013, because since October 2012 it has been possible to measure the number of hits on the system’s core features.
Eligible patients were at least 18 years old, Dutch speaking, and had a clinical diagnosis of AD or FA. Patients were referred to the online programs by GPs, specialists, dieticians or nurses. After referral, they received an account from which they were given access to the training. The account was valid for a period of three months in which patients could complete the program, but this period could be extended at the request of the participant. Informed consent was asked at the start of the online program through a specific letter and was incorporated as a link in the webpage of the program. Their reply was registered and they received a copy via email. A flowchart of the study can be found in
The Medical Ethics Review Committee of UMC Utrecht confirmed that the Medical Research Involving Human Subjects Act did not apply to this study.
Accounts for the online programs.
Measurement of the demographic variables (age and gender) was incorporated in the initial questionnaire.
Disease severity of AD was measured using the extent+ severity part of the Impact of Chronic Skin Disease on Daily Life (ISDL) questionnaire [
Disease severity characteristics of FA were measured by two questions: (1) which food caused an allergic reaction; and (2) whether the patient had been prescribed an adrenaline auto injector.
Quality of life (QoL) was measured using the Dermatology Life Quality Index (DLQI) for patients with AD. The DLQI is a self-administered general dermatology QoL instrument and consists of ten questions with a 4-point Likert scale ranging from 0 (not at all) to 3 (very much)[
QoL of patients with FA was measured using the Food Allergy Quality of Life Questionnaire-Adult Form (FAQLQ-AF). FAQLQ-AF contains 29 items and 4 domains about allergen avoidance & dietary restrictions, emotional impact, risk of accidental exposure, food allergy related health. The total FAQLQ score is the sum of all the items divided by the number of items and ranges from 1 (minimal impairment in health-related quality of life (HRQL)) to 7 (maximal impairment in HRQL) [
Self-management in patients with both conditions was measured using the health education impact Questionnaire (heiQ) version 3.0 [
Number of log-ins and hits per module and per functionality (information, exercises, videos, and patient narratives) were automatically registered in the web system of the online program. This functionality has been available since October 2012.
Statistical analyses were performed using SPSS Statistics 20.0 (IBM Corporation, Somers, NY, USA). Standard descriptive statistics were used to summarize sample characteristics and to describe numbers of log-ins and hits per module and per functionality.
The total score on the DLQI, FAQLQ-AF and the sum scores on the eight different domains of the heiQ are at interval/ratio level measurements, and correlations with the number of log-ins were calculated using Pearson’s product-moment correlation. The correlation between the extent + severity part of the ISDL, and usage was also calculated using Pearson’s product moment.
For the analysis of factors associated with number of log-ins into the online program, multiple linear regression was used. Variables related to the number of log-ins with a significance level of ≤ 0.1 were included in the model. Categorical variables were converted into dummy variables to perform the regression analysis. Prior to each regression analysis, data were checked for linearity and normality by performing a residual analysis, and checked for multicollinearity.
Since the start of both programs, a total of 513 patients received an account for the online program by their physician, nurse or dietician: 299 patients for AD and 214 for FA (
Referral to the online program.
Referral to the online program | Food allergy n(%) | Atopic dermatitis n(%) |
University hospital | 196 (92%) | 178 (60%) |
Dietician | 3 (1%) | - |
General hospital | 12 (6%) | 108 (36%) |
General practitioner | 3 (1%) | 11 (4%) |
Other |
|
2 (1%) |
Total | 214 | 299 |
Of the 299 AD patients referred to the online program, 173 logged in on at least one occasion and 95 gave informed consent for the use of their data. Eighty-one patients filled in questionnaires, but 6 were excluded because they were under 18 years of age (n=4) or age was unknown (n=2). Reasons for not using the program or no informed consent were not given, because patients were asked to give their informed consent (yes or no) online when first visiting the program.
Data of 75 patients was available for analysis (
A low, but significant correlation was shown between the number of log-ins and age (Pearson correlation coefficient r=.38,
Characteristics of users of the online program “Living with eczema”.
Characteristics | Mean (SD) |
|
Age in years | 34.4 (14.8) |
|
Number of log-ins | 3.1 (2.6) |
|
Severity of AD (ISDL score) | 18.8 (4.9) |
|
Intensity of itching (VAS) | 6.0 (2.7) |
|
Quality of life | 9.6 (7.0) |
|
|
|
|
|
Health directed behavior | 11.4 (2.4) |
|
Positive and active engagement in life | 15.0 (2.8) |
|
Emotional well-being | 12.4 (3.7) |
|
Self-monitoring and insight | 16.7 (2.2) |
|
Constructive attitude and appeal | 15.5 (2.9) |
|
Skills and techniques | 10.3 (2.1) |
|
Social integration and support | 14.6 (2.9) |
|
Health service navigation | 14.8 (2.4) |
Of the 214 FA patients referred to the online program, 124 logged in at least once and 61 gave informed consent for the use of their data. Forty-nine patients filled in questionnaires, but 4 were excluded because they were under 18 years of age. Reasons for not using the program or no informed consent were not given.
Data of 45 patients were available for analysis (
A low, but significant negative correlation was shown between the number of log-ins and the domain of self-management “social integration and support” (r=-.36,
Characteristics of users of the online program “Living with food allergy”.
Characteristics |
|
|
Gender (female), n (%) | 36 (80%) | |
Age, mean in years (SD)(range) | 34.6 (12.5) (18-64) | |
|
|
|
|
Peanut | 27 (60%) |
|
Tree nuts | 36 (80%) |
|
Vegetables + fruits | 29 (64%) |
|
Milk | 11 (24%) |
|
Egg | 8 (18%) |
|
Seafood | 5 (11%) |
|
Sesame | 7 (16%) |
|
Other | 3 (7%) |
Number of food allergies,,mean (SD) (range) | 3.5 (1.9)(1-8) | |
In possession of EpiPen, n (%) | 33 (73.3%) | |
Number of log-ins, mean (SD) (range) | 3 (2.3)(1-11) | |
|
|
|
|
Health directed behavior | 11.9 (2.6)(7-16) |
|
Positive and active engagement in life | 16.1 (2. 5)(10-20) |
|
Emotional well-being | 11.0 (3.7)(6-17) |
|
Self-monitoring and insight | 17.1 (2.2)(10-21) |
|
Constructive attitude and appeal | 16.6 (2.6)(10-20) |
|
Skills and techniques | 11.2 (1.9) (6-16) |
|
Social integration and support |
|
|
Health service navigation | 15.3 (2.2) (9-20) |
|
||
|
Allergy avoidance & dietary restrictions | 3.5 (1.2) (1.2-6.0) |
|
Emotional impact | 3.9 (1.4) (1.0-6.1) |
|
Risk of accidental exposure | 3.9 (1.2) (1.1-5.8) |
|
Food allergy related health | 3.8 (1.7) (1.3-7.0) |
|
Food allergy quality of life total score | 3.8 (1.1) (1.2-5.5) |
The modules “What is AD” and “Treatment of AD” were the most visited modules of the AD program with 34% and 32% of all hits respectively. The module “How is it diagnosed” in the FA program was most visited with 24% of all hits (
Most hits (excluding hits on introduction of a module) were on the informational parts of the modules (55-58%), followed by exercises (30-32%). Ten percent or less of all hits were on videos and patient narratives (
Use of the different modules of the program.
Atopic dermatitis (n=43 patients ; total of 109 log-ins) | Food allergy (n=30 patients; total of 65 log-ins) | ||
Usage per module | Number of hits (%) | Usage per module | Number of hits (%) |
What is AD | 179 (34%) | What is FA | 127 (18%) |
Treatment of AD | 171 (32%) | How is it diagnosed | 172 (24%) |
Communication | 46 (9%) | What to do in case of allergic reaction | 120 (17%) |
Coping with itch | 78 (15%) | Diet & food allergy | 125 (17%) |
Coping with AD in daily life | 56 (11%) | Cross-reactivity | 53 (7%) |
Coping with FA in daily life | 128 (18%) | ||
Total number of hits | 530 | Total number of hits | 725 |
Use of different functionalities per program.
Number of hits | Living with |
Living with food allergya
|
Informational parts | 307 (58%) | 331(55%) |
Exercises | 157 (30%) | 189 (32%) |
Videos | 33 (6%) | 57 (10%) |
Patient narratives | 33 (6%) | 21 (4%) |
aHits on the introduction of a module were not counted.
The online self-management programs “Living with eczema” and “Living with food allergy” were mostly used by patients of our university center. Of all referred patients, 58% logged in for at least one occasion. Patients who participated in the online program had an average of three log-ins and mostly visited the modules with information about the disease (AD or FA) and its treatment. Most hits were on the informational sections of the modules and on exercises. It seemed that higher age and lower quality of life influenced use of the AD program, while the lower scores on “social integration and support” influenced use of the FA program. However, explained variance of use was low.
The feasibility evaluations of both online programs, carried out previously, showed that usefulness and usability of the programs were well-appreciated. According to the TAM model [
Besides the factors related to the online program itself, patient characteristics may also influence the use of the program. We concluded that higher age and lower quality of life were associated with use of the “Living with AD” program, but the explained variance was 23%. The mean age of users of the AD program was 34 years. It is possible that relatively older patients more often took the opportunity to visit the program than young adults. Usage of eHealth interventions has also been studied in patients with other chronic diseases. For example, users of a health weight assistant [
Because of the low explained variance in the use of both programs, other factors than demographics, disease severity, quality of life, and self-management may be of influence. We expect that eHealth literacy is such a factor. eHealth literacy is defined as “
There is no doubt about the importance of patient education and self-management support for patients with AD [
A limitation of the study was that disease severity, quality of life, and self-management were only measured at the start of the program; as a result, effects of the program on these clinical outcomes are unknown and it is not possible to analyze which patients will benefit most from the program. Further research with a longitudinal design will give additional insight into the effects of the programs. Moreover, most patients were referred by a university center. In this center specialized nurses or dieticians already support patients with information and education The actual need for information in this university center may be lower in than in less specialized or general hospitals. Implementation of the program at regional hospitals or in community care would probably increase the use of the programs and extend it to a more diverse patient group. Knowledge about use and factors influencing use of specific self-management programs can contribute to optimal usage of these programs, which in turn will increase the intended effects on clinical outcomes. However, generalizability of the findings of this study is limited due to the small sample size and specific adult patient group.
Physicians, dieticians, and nurses, mostly from a university center, regularly referred their patients to the online programs “Living with food allergy” or “Living with eczema” for online self-management training, in addition to the usual face-to-face care. Nearly 60% of all referred patients logged in. All modules seemed to be relevant, but there is room for improvement in use of the program. Age, quality of life, and lower social integration and support were related to use of the program, but only a part of variance in use could be explained. Further research is needed into predictors of use related to the program and characteristics of users, as well as further research into the effects of the program on clinical outcomes.
atopic dermatitis
Dermatology Life Quality Index
food allergy
food allergy quality of life questionnaire-adult Form
health education impact questionnaire
health-related quality of life
Impact of Chronic Skin Disease on Daily Life
quality of life
Visual Analogue Scale
The development of the online program “Living with food allergy” was funded by the Innovatiefonds Zorgverzekeraars, Zeist, the Netherlands. The development of the online program “Living with eczema” was funded by Stichting Voorzorg, Utrecht, the Netherlands. No funding was received for the study, described in this manuscript. The authors thank Richard Osborne and his colleagues, Deakin University Australia for the collaboration in translating the heiQ into Dutch
None declared.