scholarly journals Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration

10.2196/16121 ◽  
2019 ◽  
Vol 6 (12) ◽  
pp. e16121 ◽  
Author(s):  
Emma Morton ◽  
Rachelle Hole ◽  
Greg Murray ◽  
Simone Buzwell ◽  
Erin Michalak
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Assessment Tool ◽  
Self Management ◽  
Care Providers ◽  
Self Assessment ◽  
Self Monitoring ◽  
Web Based ◽  
Qualitative Exploration

Background Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work. Objective This study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool. Methods A total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD. Results In total, 4 categories describing people’s experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use. Conclusions The findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone–based apps.

scholarly journals Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration (Preprint)

2019 ◽  
Author(s):  
Emma Morton ◽  
Rachelle Hole ◽  
Greg Murray ◽  
Simone Buzwell ◽  
Erin Michalak
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Assessment Tool ◽  
Self Management ◽  
Care Providers ◽  
Self Assessment ◽  
Self Monitoring ◽  
Web Based ◽  
Qualitative Exploration

BACKGROUND Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work. OBJECTIVE This study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool. METHODS A total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD. RESULTS In total, 4 categories describing people’s experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use. CONCLUSIONS The findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone–based apps.

Supporting Self-Management and Quality of Life in Bipolar Disorder with the Beta PolarUs App: Protocol for a Mixed-Methods Study (Preprint)

2022 ◽  
Author(s):  
Erin E Michalak ◽  
Steven J Barnes ◽  
Emma Morton ◽  
Heather O'Brien ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Self Management ◽  
Community Based ◽  
Self Monitoring ◽  
Web Based ◽  
Beta Version

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.

scholarly journals Supporting Self-Management in Bipolar Disorder: Mixed-Methods Knowledge Translation Study (Preprint)

2019 ◽  
Author(s):  
Erin E Michalak ◽  
Emma Morton ◽  
Steven J Barnes ◽  
Rachelle Hole ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Mixed Methods ◽  
Chronic Disease ◽  
Knowledge Translation ◽  
Digital Health ◽  
Self Management ◽  
Web Based ◽  
Health Technologies

BACKGROUND Self-management is increasingly recognized as an important method through which individuals with bipolar disorder (BD) may cope with symptoms and improve quality of life. Digital health technologies have strong potential as a method to support the application of evidence-informed self-management strategies in BD. Little is known, however, about how to most effectively maximize user engagement with digital platforms. OBJECTIVE The aims of this study were (1) to create an innovative Web-based Bipolar Wellness Centre, (2) to conduct a mixed-methods (ie, quantitative and qualitative) evaluation to assess the impact of different sorts of engagement (ie, knowledge translation [KT]), and (3) to support engagement with the self-management information in the Bipolar Wellness Centre. METHODS The project was implemented in 2 phases. In phase 1, community-based participatory research and user-centered design methods were used to develop a website (Bipolar Wellness Centre) housing evidence-informed tools and strategies for self-management of BD. In phase 2, a mixed-methods evaluation was conducted to explore the potential impact of 4 KT strategies (Web-based webinars, Web-based videos, Web-based one-to-one Living Library peer support, and in-person workshops). Quantitative assessments occurred at 2 time points—preintervention and 3 weeks postintervention. Purposive sampling was used to recruit a subsample of participants for the qualitative interviews, ensuring each KT modality was represented, and interviews occurred approximately 3 weeks postintervention. RESULTS A total of 94 participants were included in the quantitative analysis. Responses to evaluative questions about engagement were broadly positive. When averaged across the 4 KT strategies, significant improvements were observed on the Bipolar Recovery Questionnaire (F1,77=5.887; P=.02) and Quality of Life in Bipolar Disorder (F1,77=8.212; P=.005). Nonsignificant improvements in positive affect and negative affect were also observed. The sole difference that emerged between KT strategies related to the Chronic Disease Self-Efficacy measure, which decreased after participation in the webinar and video arms but increased after the Living Library and workshop arms. A subsample of 43 participants was included in the qualitative analyses, with the majority of participants describing positive experiences with the 4 KT strategies; peer contact was emphasized as a benefit across all strategies. Infrequent negative experiences were reported in relation to the webinar and video strategies, and included technical difficulties, the academic tone of webinars, and feeling unable to relate to the actor in the videos. CONCLUSIONS This study adds incremental evidence to a growing literature that suggests digital health technologies can provide effective support for self-management for people with BD. The finding that KT strategies could differentially impact chronic disease self-efficacy (hypothesized as being a product of differences in degree of peer contact) warrants further exploration. Implications of the findings for the development of evidence-informed apps for BD are discussed in this paper.

scholarly journals Supporting Self-Management in Bipolar Disorder: Mixed-Methods Knowledge Translation Study

10.2196/13493 ◽  
2019 ◽  
Vol 6 (4) ◽  
pp. e13493 ◽  
Author(s):  
Erin E Michalak ◽  
Emma Morton ◽  
Steven J Barnes ◽  
Rachelle Hole ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Mixed Methods ◽  
Chronic Disease ◽  
Knowledge Translation ◽  
Digital Health ◽  
Self Management ◽  
Web Based ◽  
Health Technologies

Background Self-management is increasingly recognized as an important method through which individuals with bipolar disorder (BD) may cope with symptoms and improve quality of life. Digital health technologies have strong potential as a method to support the application of evidence-informed self-management strategies in BD. Little is known, however, about how to most effectively maximize user engagement with digital platforms. Objective The aims of this study were (1) to create an innovative Web-based Bipolar Wellness Centre, (2) to conduct a mixed-methods (ie, quantitative and qualitative) evaluation to assess the impact of different sorts of engagement (ie, knowledge translation [KT]), and (3) to support engagement with the self-management information in the Bipolar Wellness Centre. Methods The project was implemented in 2 phases. In phase 1, community-based participatory research and user-centered design methods were used to develop a website (Bipolar Wellness Centre) housing evidence-informed tools and strategies for self-management of BD. In phase 2, a mixed-methods evaluation was conducted to explore the potential impact of 4 KT strategies (Web-based webinars, Web-based videos, Web-based one-to-one Living Library peer support, and in-person workshops). Quantitative assessments occurred at 2 time points—preintervention and 3 weeks postintervention. Purposive sampling was used to recruit a subsample of participants for the qualitative interviews, ensuring each KT modality was represented, and interviews occurred approximately 3 weeks postintervention. Results A total of 94 participants were included in the quantitative analysis. Responses to evaluative questions about engagement were broadly positive. When averaged across the 4 KT strategies, significant improvements were observed on the Bipolar Recovery Questionnaire (F1,77=5.887; P=.02) and Quality of Life in Bipolar Disorder (F1,77=8.212; P=.005). Nonsignificant improvements in positive affect and negative affect were also observed. The sole difference that emerged between KT strategies related to the Chronic Disease Self-Efficacy measure, which decreased after participation in the webinar and video arms but increased after the Living Library and workshop arms. A subsample of 43 participants was included in the qualitative analyses, with the majority of participants describing positive experiences with the 4 KT strategies; peer contact was emphasized as a benefit across all strategies. Infrequent negative experiences were reported in relation to the webinar and video strategies, and included technical difficulties, the academic tone of webinars, and feeling unable to relate to the actor in the videos. Conclusions This study adds incremental evidence to a growing literature that suggests digital health technologies can provide effective support for self-management for people with BD. The finding that KT strategies could differentially impact chronic disease self-efficacy (hypothesized as being a product of differences in degree of peer contact) warrants further exploration. Implications of the findings for the development of evidence-informed apps for BD are discussed in this paper.

scholarly journals Patient-reported outcomes measure for children born preterm: validation of the SOLE VLBWI Questionnaire, a new quality of life self-assessment tool

2016 ◽  
Vol 58 (9) ◽  
pp. 957-964 ◽  
Author(s):  
Ivana Olivieri ◽  
Stefania M Bova ◽  
Elisa Fazzi ◽  
Daniela Ricci ◽  
Francesca Tinelli ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Assessment Tool ◽  
Self Assessment ◽  
Patient Reported

scholarly journals Intervention and Evaluation of Mobile Health Technologies in Management of Patients Undergoing Chronic Dialysis: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Yang Yang ◽  
Helen Chen ◽  
Hammad Qazi ◽  
Plinio P Morita
Keyword(s):  
Quality Of Life ◽  
Mobile Health ◽  
Scoping Review ◽  
Behavioral Change ◽  
User Acceptance ◽  
Adult Patients ◽  
Chronic Dialysis ◽  
Self Monitoring ◽  
Web Based

BACKGROUND Studies have shown the effectiveness and user acceptance of mobile health (mHealth) technologies in managing patients with chronic kidney disease (CKD). However, incorporating mHealth technology into the standard care of patients with CKD still faces many challenges. To our knowledge, there are no reviews on mHealth interventions and their assessments concerning the management of patients undergoing dialysis. OBJECTIVE This study provided a scoping review on existing apps and interventions of mHealth technologies in adult patients undergoing chronic dialysis and identified the gaps in patient outcome assessment of mHealth technologies in the literature. METHODS We systematically searched PubMed (MEDLINE), Scopus, and the Cumulative Index to Nursing and Allied Health Literature databases, as well as gray literature sources. Two keywords, “mHealth” and “dialysis,” were combined to address the main concepts of the objectives. Inclusion criteria were as follows: (1) mHealth interventions, which are on a smartphone, tablet, or web-based portals that are accessible through mobile devices; and (2) adult patients (age ≥18 years) on chronic dialysis. Only English papers published from January 2008 to October 2018 were included. Studies with mHealth apps for other chronic conditions, based on e-consultation or videoconferencing, non-English publications, and review papers were excluded. RESULTS Of the 1054 papers identified, 22 met the inclusion and exclusion criteria. Most studies (n=20) were randomized controlled trials and cohort studies. These studies were carried out in 7 countries. The main purposes of these mHealth interventions were as follows: nutrition or dietary self-monitoring (n=7), remote biometric monitoring (n=7), web-based portal (n=4), self-monitoring of in-session dialysis-specific information (n=3), and self-monitoring of lifestyle or behavioral change (n=1). The outcomes of the 22 included studies were organized into five categories: (1) patient satisfaction and acceptance, (2) clinical effectiveness, (3) economic assessment, (4) health-related quality of life, and (5) impact on lifestyle or behavioral change. The mHealth interventions showed neutral to positive results in chronic dialysis patient management, reporting no to significant improvement of dialysis-specific measurements and some components of the overall quality of life assessment. Evaluation of these mHealth interventions consistently demonstrated evidence in patients’ satisfaction, high level of user acceptance, and reduced use of health resources and cost savings to health care services. However, there is a lack of studies evaluating safety, organizational, sociocultural, ethical, and legal aspects of mHealth technologies. Furthermore, a comprehensive cost-effectiveness and cost-benefit analysis of adopting mHealth technologies was not found in the literature. CONCLUSIONS The gaps identified in this study will inform the creation of health policies and organizational support for mHealth implementation in patients undergoing dialysis. The findings of this review will inform the development of a comprehensive service model that utilizes mHealth technologies for home monitoring and self-management of patients undergoing chronic dialysis.

scholarly journals An Assessment of Cancer Pain Control in an LMIC Oncology Clinic

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 230s-230s
Author(s):  
A. Joseph ◽  
O. Salako ◽  
A. Alabi ◽  
A. Adenipekun
Keyword(s):  
Quality Of Life ◽  
Cancer Pain ◽  
Pain Assessment ◽  
Pain Control ◽  
Assessment Tool ◽  
Study Group ◽  
Care Providers ◽  
Prevalence Of Pain

Background: Cancer has become a leading cause of morbidity and mortality in adults globally. Pain is universally one of the most commonly encountered symptoms by health and supportive care providers involved in care of cancer patients. Inadequate pain control negatively impacts the patient´s quality of life, and may slow down the healing process. Health care providers often ignore pain control as a target of treatment as they focus on reducing the tumor burden. Pain management should be considered an important target and end point in the treatment of cancer patients. Aim: To assess the prevalence of pain, oncologists´ prescribing patterns; and efficacy of pain control in the Radiotherapy Department of the Lagos University Teaching Hospital. Methods: Adult cancer outpatients were assessed using a Universal Pain Assessment Tool and followed up for 2-6 weeks thereafter. Pain scores were assessed at first interview and at the follow-up appointment within 2 weeks minimum and 6 weeks maximum. Results: 347 adult clinic attendees were recruited, assessed, and followed up with interviewer-administered questionnaires over a close-out period of 6 weeks. There was an 85% (298 respondents) prevalence of pain in the study group; with over half of respondents characterizing their pain in the moderate to severe ranges. [Figure: see text] 9 out of 10 respondents stated the cancer was the primary source of their pain. Other sources of pain were medical tests; and treatment-related such as chemotherapy and radiation therapy. 86 patients (29% of study group) were not asked about pain by their attending physician, and all respondents stated their physician had not used any pain assessment tool to determine the nature or severity of their pain. [Figure: see text] Oral nonsteroidal analgesics were the most frequently prescribed form of pain control (237 patients), with radiotherapy coming in second (69 patients). The only available strong opioid analgesics at the oncology pharmacy were oral morphine and parenteral pentazocine. Oxycodone, fentanyl pethidine, and hydromorphone were unavailable. Interventional (e.g., cordotomy) and alternative (e.g., massage) forms of pain control were not prescribed in any patients. 43 respondents (15%) despite being in pain, did not receive any form of treatment or recommendation for pain control. At follow-up appointment 2-6 weeks after; 4 out of 10 respondents had not obtained pain relief from instituted measures. [Figure: see text] Conclusion: Undertreatment of cancer pain remains a major concern. The treatment process must begin with a proper and thorough evaluation of the patient's pain; a clear pain control goal and end point target; and regular reevaluation with application of guidelines when adequate control is not achieved. Inclusion of pain assessment and management guidelines in medical training would be of benefit to reduce the prevalence of inadequately controlled pain in patients living with cancer; ultimately improving their quality of life.

OP28 Patient Involvement at AQuAS: Experiences And Reflections For Future

2019 ◽  
Vol 35 (S1) ◽  
pp. 6-6
Author(s):  
Lina Masana ◽  
Emmanuel Gimenez Garcia ◽  
Mireia Espallargues
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Cataract Surgery ◽  
Patient Involvement ◽  
Assessment Tool ◽  
Economic Evaluations ◽  
Self Assessment ◽  
Maxillofacial Reconstruction ◽  
Patient Reported

IntroductionAQuAS is gradually incorporating patient involvement in health technology assessment (HTA). We present two experiences conducted during 2018 and the different methods and approaches used. The aim is to reflect on learnings from those experiences to improve ways for increasing patient involvement with HTA at AQuAS.MethodsWe conducted two experiences using different quantitative and qualitative techniques (mix-methods approach). The first, a focus group discussion regarding the use of 3D-technologies for maxillofacial reconstruction with a selection of hospital patients that received maxillofacial reconstruction, which included the use of a quality-of-life retrospective self-assessment tool. The second, a sequence of email correspondence regarding cataract surgery technology (femtosecond laser-assisted cataract surgery (FLACS), in the context of an EUnetHTA Joint Assessment) with a patients’ association representative, to learn their opinion regarding the use of laser technology.ResultsMain learnings were: (1) patients and associations have different levels of knowledge and expertise to consider when planning an HTA; (2) sharing experience and knowledge among peers (i.e. focus group) proved to have a positive impact on patients and worked as a resource for some to improve knowledge on their condition; (3) critiques were received regarding a specific Patient Reported Experience template for HTA patient involvement (iv) quality of life retrospective self-assessment tool provided unexpected positive and negative results.ConclusionsRecent patient involvement in HTA at AQuAS proved to be useful to complement HTA reports. We believe that patients’ experiences and opinions can help decision-making regarding the use, disinvestment or incorporation of health technologies, contribute to the improvement of tools and survey accuracy and improve doctor-patient communication. Their involvement might be beneficial for them to gain more knowledge, share experiences, reflect on their health situation and improve communication with the professionals that treat them. Future patient-involvement in HTA is needed, e.g. considering the social perspective in economic evaluations or including patients in recommendation consensus panels.

Research Implementing the Flinders Model of Self-management Support with Aboriginal People who have Diabetes: Findings from a Pilot Study

2008 ◽  
Vol 14 (1) ◽  
pp. 66 ◽  
Author(s):  
Malcolm W. Battersby ◽  
Jackie Ah Kit ◽  
Colleen Prideaux ◽  
Peter W. Harvey ◽  
James P. Collins ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assessment Tool ◽  
Aboriginal People ◽  
Health Workers ◽  
South Australia ◽  
Management Program ◽  
Self Management ◽  
Management Support ◽  
Structured Interviews

A pilot program for Aboriginal people with diabetes on Eyre Peninsula, South Australia, aimed to test the acceptability and impact of using the Flinders model of self-management care planing to improve patient self-management. A community development approach was used to conduct a twelve-month demonstration project. Aboriginal health workers (AHWs) conducted patient-centred, self-management assessment and care planning. Impacts were measured by patient-completed diabetes self-management assessment tool, goal achievement, quality of life and clinical measures at baseline and 12 months. Impact and acceptability were also assessed by semi-structured interviews and focus groups of AHWs. Sixty Aboriginal people with type 2 diabetes stated their main problems as family and social dysfunction, access to services, nutrition and exercise. Problems improved by 12% and goals by 26%, while quality of life scores showed no significant change. Self-management scores improved in five of six domains. Mean HbA1c reduced from 8.74-8.09 and mean blood pressure was unchanged. AHWs found the process acceptable and appropriate for them and their patients. It was concluded that a diabetes self-management program provided by AHWs is acceptable, improves self-management and is seen to be useful by Aboriginal communities. Barriers include lack of preventative health services, social problems and time pressure on staff. Enablers include community concern regarding the prevalence and mortality associated with diabetes.

scholarly journals The Role of Education, Monitoring, and Symptom Perception in Internet-Based Self-management Among Adolescents With Asthma: Secondary Analysis of a Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Thijs Beerthuizen ◽  
E R V M Rikkers-Mutsaerts ◽  
Jiska B Snoeck-Stroband ◽  
Jacob K Sont
Keyword(s):  
Quality Of Life ◽  
Asthma Control ◽  
Controlled Trial ◽  
Self Management ◽  
Life Questionnaire ◽  
Symptom Perception ◽  
Web Based ◽  
Randomized Controlled ◽  
Related Quality

BACKGROUND Internet-based self-management programs improve asthma control and the asthma-related quality of life in adults and adolescents. The components of self-management programs include education and the web-based self-monitoring of symptoms; the latter requires adequate perception in order to timely adjust lifestyle or medication or to contact a care provider. OBJECTIVE We aimed to test the hypothesis that adherence to education and web-based monitoring and adequate symptom perception are important determinants for the improvement of asthma control in self-management programs. METHODS We conducted a subgroup analysis of the intervention group of a randomized controlled trial, which included adolescents who participated in the internet-based self-management arm. We assessed the impacts that attendance in education sessions, the frequency of web-based monitoring, and the level of perception had on changes in asthma control (Asthma Control Questionnaire [ACQ]) and asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire) from baseline to 12 months after intervention. RESULTS Adolescents who attended education sessions had significant and clinically relevant improvements in asthma control (ACQ score difference: −0.6; <i>P</i>=.03) and exhibited a nonsignificant trend of improvement in asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire score difference: −0.45; <i>P</i>=.15) when compared to those who did not adhere to education. Frequent monitoring alone did not improve asthma control (<i>P</i>=.07) and quality of life (<i>P</i>=.44) significantly, but its combination with education did result in improved ACQ scores (difference: −0.88; <i>P</i>=.02). There were no significant differences in outcomes between normoperceivers and hypoperceivers. CONCLUSIONS Education, especially in combination with frequent web-based monitoring, is an important determinant for the 1-year outcomes of asthma control in internet-based self-management programs for adolescents with partly controlled and uncontrolled asthma; however, we could not establish the effect of symptom perception. This study provides important knowledge on the effects of asthma education and monitoring in daily life.

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