Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

2022 ◽  
Author(s):  
Lucy Ruth Holland ◽  
Jodi Hilton ◽  
Kim Cookson ◽  
Milena Heinsch ◽  
Conor Gilligan ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young Adults ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Modifiable Factors

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

10.2196/12442 ◽  
2019 ◽  
Vol 7 (11) ◽  
pp. e12442
Author(s):  
Isa Rudolf ◽  
Katharina Pieper ◽  
Helga Nolte ◽  
Sibylle Junge ◽  
Christian Dopfer ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Life Satisfaction ◽  
Young Adults ◽  
Lung Function ◽  
Mobile App ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Lung Function Decline ◽  
High Treatment ◽  
Observation Period

Background Cystic 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. Objective This 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. Methods A 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. Results The 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. Conclusions Most 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.

scholarly journals Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation (Preprint)

2018 ◽  
Author(s):  
Isa Rudolf ◽  
Katharina Pieper ◽  
Helga Nolte ◽  
Sibylle Junge ◽  
Christian Dopfer ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Life Satisfaction ◽  
Young Adults ◽  
Lung Function ◽  
Mobile App ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Lung Function Decline ◽  
High Treatment ◽  
Observation Period

BACKGROUND Cystic 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. OBJECTIVE This 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. METHODS A 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. RESULTS The 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. CONCLUSIONS Most 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.

Evaluation of an Internet Diabetes Self-Management Training Program for Adolescents and Young Adults

2007 ◽  
Vol 9 (1) ◽  
pp. 60-67 ◽  
Author(s):  
Ben S. Gerber ◽  
Marla C. Solomon ◽  
Tracie L. Shaffer ◽  
Michael T. Quinn ◽  
Rebecca B. Lipton
Keyword(s):  
Young Adults ◽  
Training Program ◽  
Management Training ◽  
Adolescents And Young Adults ◽  
Self Management

Using a Heuristic App to Improve Symptom Self-Management in Adolescents and Young Adults with Cancer

2019 ◽  
Vol 8 (2) ◽  
pp. 131-141 ◽  
Author(s):  
Jeanne M. Erickson ◽  
Suzanne Ameringer ◽  
Lauri Linder ◽  
Catherine Fiona Macpherson ◽  
R.K. Elswick ◽  
...  
Keyword(s):  
Young Adults ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Improve Symptom

scholarly journals Yoga as a Therapy for Adolescents and Young Adults with Cystic Fibrosis: A Pilot Study

2015 ◽  
Vol 4 (6) ◽  
pp. 32-36 ◽  
Author(s):  
Jennifer Ruddy ◽  
Julia Emerson ◽  
Sharon Mcnamara ◽  
Alan Genatossio ◽  
Cora Breuner ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young Adults ◽  
Pilot Study ◽  
Adolescents And Young Adults
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