scholarly journals Users’ Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

10.2196/15896 ◽  
2020 ◽  
Vol 8 (7) ◽  
pp. e15896 ◽  
Author(s):  
Jacqueline Floch ◽  
Thomas Vilarinho ◽  
Annabel Zettl ◽  
Gema Ibanez-Sanchez ◽  
Joaquim Calvo-Lerma ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Cystic Fibrosis ◽  
Mixed Methods ◽  
Chronic Diseases ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Management Approach

Background Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users’ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users’ experiences can inform the design of approaches toward increased motivation for digital self-management. Objective This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. Methods A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. Results Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. Conclusions Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case—the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.

scholarly journals Users’ Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study (Preprint)

2019 ◽  
Author(s):  
Jacqueline Floch ◽  
Thomas Vilarinho ◽  
Annabel Zettl ◽  
Gema Ibanez-Sanchez ◽  
Joaquim Calvo-Lerma ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Cystic Fibrosis ◽  
Mixed Methods ◽  
Chronic Diseases ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Management Approach

BACKGROUND Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users’ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users’ experiences can inform the design of approaches toward increased motivation for digital self-management. OBJECTIVE This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. METHODS A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. RESULTS Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. CONCLUSIONS Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case—the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.

scholarly journals Evaluation of a Mobile Phone App for Patients With Pollen-Related Allergic Rhinitis: Prospective Longitudinal Field Study

10.2196/15514 ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. e15514
Author(s):  
Manuela Glattacker ◽  
Martin Boeker ◽  
Robin Anger ◽  
Frank Reichenbach ◽  
Adrian Tassoni ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Allergic Rhinitis ◽  
Health Literacy ◽  
Mobile Phone ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Prospective Longitudinal

Background Mobile health apps have great potential to support the self-management of chronic conditions such as allergic diseases, which constitute significant challenges in health care. However, the health app market is confusing for users, as it is vast, dynamic, and lacks scientific evidence regarding the effectiveness of the apps on offer. To our knowledge, no health app for pollen-related allergic rhinitis has been evaluated. Objective The aim of our study was to evaluate the Husteblume mobile phone health app, developed in Germany to facilitate the self-management of pollen-related allergic rhinitis. Methods We evaluated usability and changes in quality of life, health literacy, and self-efficacy for managing one’s chronic disease. We conducted 2 online surveys of registered users of the app, 1 before and 1 after the 2017 pollen season, allowing for the analysis of both cross-sectional and longitudinal data in a field setting. Results The sample comprised 661 app users at the first measurement point and 143 users at follow-up. The subgroup of study participants at follow-up rated the usability of the app as good or very good. There were no significant changes in patient-reported outcomes such as quality of life, health literacy, and self-efficacy between the 2 measurement points (P>.05). However, those reached at follow-up perceived subjective improvements due to the app: 55.9% (80/143) reported being subjectively better informed about their allergy, 27.3% (39/143) noted improved quality of life, 33.6% (48/143) reported subjectively better coping with their allergy, and 28.0% (40/143) felt better prepared for the consultation with their physician. Finally, 90.9% (130/143) users did not identify any adverse effects of the app. Conclusions Despite some methodological caveats, the results of the evaluation of the Husteblume app are encouraging for the subgroup using the app in the long term. However, further studies evaluating the effectiveness of the app are needed. Trial Registration German Clinical Trials Register DRKS00011897; https://tinyurl.com/yxxrg9av

Exploring Personal Healthcare with the Help of Two Large European Framework Programs for Healthcare

2010 ◽  
pp. 918-938
Author(s):  
Harald Reiter ◽  
Joerg Habetha
Keyword(s):  
Chronic Diseases ◽  
New Technologies ◽  
Wearable Sensors ◽  
Ease Of Use ◽  
The Self ◽  
Self Management ◽  
European Research ◽  
Research Projects ◽  
Personal Healthcare

Personal healthcare enables prevention and early diagnosis in daily life and is centered on the patient. There is a need for a new personal healthcare paradigm in the treatment of chronic diseases. This will be achieved by new technologies that are currently explored (e.g., in European Research projects such as MyHeart and HeartCycle). These projects develop technologies and application concepts for the (self-)management of chronic diseases in patients’ homes with special emphasis on usability and ease-of-use (e.g., wearable sensors and processing units that can even be integrated into the patient’s clothes). These technologies allow empowering patients, fostering self-management and therefore reducing cost, and improving patients’ quality of life.

Measuring Self-Efficacy Expectations for the Self-management of Cystic Fibrosis

CHEST Journal ◽  
1993 ◽  
Vol 103 (5) ◽  
pp. 1524-1530 ◽  
Author(s):  
L. Kay Bartholomew ◽  
Guy S. Parcel ◽  
Paul R. Swank ◽  
Danita I. Czyzewski
Keyword(s):  
Cystic Fibrosis ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Efficacy Expectations

Six-Month Data From a Pilot Self-Management Intervention ForAdolescents With Sickle Cell Disease

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 1675-1675 ◽  
Author(s):  
Lori E Crosby ◽  
Naomi Joffe ◽  
Karen Kalinyak ◽  
Alex Bruck ◽  
Clinton H Joiner
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Cell Disease ◽  
Management Skills ◽  
Post Intervention ◽  
Management Behaviors

Abstract Background Tanabe and colleagues (2010) highlighted the importance of engaging patients with Sickle Cell Disease (SCD) in disease self-management activities to improve health outcomes. Specifically, they recommended interventions that address disease self-efficacy, patient-provider communication, healthy lifestyle behaviors, future planning, and advocacy. The Stanford Chronic Disease Self-Management Program (CDSMP) is a six-week, structured intervention for adults with a chronic disease that helps them develop self-management skills in all of these areas. The CDSMP has been implemented with adults with a variety of chronic diseases (e.g., arthritis, Type II diabetes), and outcome data has shown improvements in health utilization, health status and self-management behaviors for participants six-months post participation in the CDSMP (Lorig et al. 2001). There is limited data available on the effectiveness of the CDSMP for adults with SCD, particularly young adults and adolescents. As a first step in examining the effectiveness of the CDSMP in adolescents with SCD, we conducted two CDSMP intervention groups with SCD patients 16-24 years of age. Objective The objective of the study was to assess: 1) the feasibility, acceptability and utility of the CDSMP with this population, and, 2) changes in disease self-efficacy, quality of life (QOL), and self-management behaviors from pre to 6-months after participation in the CDSMP. Methods Patients were eligible if they: 1) had a diagnosis of SCD; 2) were followed by the University of Cincinnati Health Complex or Cincinnati Children’s Hospital Medical Center (CCHMC) sickle cell clinics; 3) were between the ages of 16 -24; and, 4) had no significant cognitive limitations. Participants received a letter followed by a phone call inviting them to participate in the CDSMP and were compensated at the end of each weekly session. Results Eighteen adolescents completed the CDSMP (i.e., attended four of the six sessions) and have completed their 6-month follow-up. The majority of patients were female (56%) and had Hb SS (SS 67%; SC 28%; Sβ+Thal 5%); the mean age for participants was 19.06 (SD = 2.44). Acceptability data indicated that sessions 2 and 6 (physical activity and exercise, managing difficult emotions, working with your healthcare provider, and planning for the future) were the most beneficial. Overall participant satisfaction with the CDSMP was high, M=8.88 (SD=1.67) on a scale of 1-10 (10=totally satisfied). Qualitative comments suggest that the participants enjoyed interacting with other patients and learning skills to help manage their illness. Repeated measures ANOVAs were used to examine the QOL and disease self-efficacy data. There was not a significant improvement on PedsQL total scores over time. Patient-reported disease self-efficacy scores showed a positive trend (F(1.572, 9.432) = 3.442, P = .083). Participants reported continuing to use a number of the self-management skills/strategies they learned during the intervention such as better breathing (86.7%), problem solving (73.3%), and action planning (66.7%). Discussion Initial Results from this small pilot suggest that the CDSMP may have some promising benefits as an intervention for adolescents and young adults with SCD given its feasibility, acceptability, and potential impact on disease self-efficacy and utilization of skills learned. In addition to participants being satisfied with the content, structure, and opportunity to interact with other participants, they also reported that they continued to use the self-management skills that they had developed. Disease self-efficacy also trended upwards for participants over the course of the intervention. Although improvements in quality of life were not observed at six-months post-intervention, the small sample size likely had an impact. The next steps will be to examine these outcomes for the duration of the post-intervention period (i.e., nine and twelve-month follow-ups) to determine whether the improvements in disease self-efficacy are maintained and whether we see quality of life improving once analyses are completed with a more complete sample size. Disclosures: No relevant conflicts of interest to declare.

scholarly journals FACTORS INFLUENCING SELF-MANAGEMENT BEHAVIORS OF PATIENTS WITH HEMODIALYSIS

2021 ◽  
Vol 10 (4) ◽  
pp. 3154-3159
Author(s):  
Jieun Cha
Keyword(s):  
Self Efficacy ◽  
Secondary Analysis ◽  
Descriptive Study ◽  
Psychological State ◽  
Self Management ◽  
Management Behaviour ◽  
Management Behaviors

Improving the level of self-management is a useful way to cut down the incidence of mortality and complications and enhance quality of life. The purpose of this study was to explore the potential effects of positive and negative emotions on self-management behaviour among persons undergoing hemodialysis. A descriptive study and secondary analysis was conducted using two surveys that were administered two years apart (2014, 2016). A total of 250 hemodialysis patients were included in the first survey and 75 participated in the two-year follow-up survey in 2016.Self-efficacy, serenity, and depression was measured at baseline, and self-management was assessed at the two-year follow-up. Baseline self-efficacy (r = .36, p = .002) and serenity (r = .32, p = .005) were positively associated with follow-up self-management behaviour. Hierarchical multiple regression analysis showed baseline self-efficacy was a important predictor of self-management behaviours, explaining 10.7% of the variance (F = 5.14, p= .003). This study demonstrated the importance of maintaining a positive psychological state, particularly self-efficacy and serenity, while coping with a long-term chronic disease. Improving self-efficacy may increase self-management behaviour of patients undergoing hemodialysis or potentially of patients with other chronic therapies or conditions.

Knowledge, Attitude, and Self-Efficacy in Asthma Self-Management and Quality of Life

2010 ◽  
pp. 1-6
Author(s):  
Carol A. Mancuso ◽  
Wendy Sayles ◽  
John P. Allegrante
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Self Management

scholarly journals Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Helena M. Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n = 70). A representative sample of primary diagnoses were invited (n = 28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p = 0.003, CI: 3.9–14.6) and sex (p = 0.022, CI: − 13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

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