Breathlessness and exercise performance to predict mortality in long-term oxygen therapy - The population-based DISCOVERY study.

BACKGROUND: Patients with chronic respiratory failure treated with long-term oxygen therapy (LTOT) often have severe breathlessness, impaired exercise performance, and high but variable mortality that is difficult to predict. We aimed to evaluate breathlessness and exercise performance upon starting LTOT as predictors of overall and short-term mortality. METHODS: This was a longitudinal, population-based study of patients who initiated LTOT between 2015 and 2018 in Sweden. Breathlessness was measured using the Dyspnea Exertion Scale, and exercise performance using the 30s-Sit-To-Stand test. Associations with overall and three-month mortality were analyzed using Cox-regression. Subgroup analyses were performed for patients with chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) respectively. The predictive capacity of models was assessed using a C-statistic. RESULTS: A total of 441 patients (57.6% female, aged 75.4 ± 8.3 years) were analyzed, of whom 141 (32%) died during a median follow-up of 260 (IQR 75-460) days. Both breathlessness and exercise performance were independently associated with overall mortality in the crude models, but only exercise performance remained independently associated with overall mortality when models were adjusted for other predictors, when short-term mortality was analyzed, or when breathlessness and exercise capacity were analyzed concurrently. The multivariable model including exercise performance but not breathlessness provided a relatively high predictive capacity for overall mortality, C-statistic 0.756 (95% CI 0.702-0.810). Similar results were seen in the COPD and ILD subgroups. CONCLUSION: Exercise performance as measured by the 30s-STS may be useful to identify patients with higher mortality on LTOT for optimized management and follow-up.

Experiences of Using an Electronic Health Tool Among Health Care Professionals Involved in Chronic Obstructive Pulmonary Disease Management: Qualitative Analysis.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is one of the most common and deadliest chronic diseases of the 21st century. eHealth tools are seen as a promising way of supporting health care professionals in providing evidence-based COPD care, for example, by reinforcing information and interventions provided to the patients and providing easier access and support to the health care professional themselves. Still, knowledge is scarce on the experience of using eHealth tools from the perspective of the health care professional involved in COPD management. OBJECTIVE: The study explored the experiences of using an eHealth tool among health care professionals that worked with patients with COPD in their daily clinical practice. METHODS: This exploratory qualitative study is part of a process evaluation in a parallel group, controlled, pragmatic pilot trial. Semistructured interviews were performed with 10 health care professionals 3 and 12 months after getting access to an eHealth tool, the COPD Web. The COPD Web, developed using cocreation, is an interactive web-based platform that aims to help health care professionals provide health-promoting strategies. Data from the interviews were analyzed using qualitative content analysis with an inductive approach. RESULTS: The main results reflected health care professionals' experiences in 3 categories: receiving competence support and adjusting practice, improving quality of care, and efforts required for implementation. These categories highlighted that using an eHealth tool such as the COPD Web was experienced to provide knowledge support for health care professionals that led to adaptation and facilitation of working procedures and person-centered care. Taken together, these changes were perceived to improve the quality of care through enhanced patient contact and encouragement of interprofessional collaboration. In addition, health care professionals expressed that patients using the COPD Web were better equipped to tackle their disease and adhered better to provided treatment, increasing their self-management ability. However, structural and external barriers bar the successful implementation of an eHealth tool in daily praxis. CONCLUSIONS: This study is among the first to explore experiences of using an eHealth tool among health care professionals involved in COPD management. Our novel findings highlight that using an eHealth tool such as the COPD Web may improve the quality of care for patients with COPD (eg, by providing knowledge support for health care professionals and adapting and facilitating working procedures). Our results also indicate that an eHealth tool fosters collaborative interactions between patients and health care professionals, which explains why eHealth is a valuable means of encouraging well-informed and autonomous patients. However, structural and external barriers requiring time, support, and education must be addressed to ensure that an eHealth tool can be successfully implemented in daily praxis. TRIAL REGISTRATION: ClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187.

A scoping review of co-creation practice in the development of non-pharmacological interventions for people with Chronic Obstructive Pulmonary Disease: A health CASCADE study.

BACKGROUND: Incorporating co-creation processes may improve the quality of outcome interventions. However, there is a lack of synthesis of co-creation practices in the development of Non-Pharmacological Interventions (NPIs) for people with Chronic Obstructive Pulmonary Disease (COPD), that could inform future co-creation practice and research for rigorously improving the quality of care. OBJECTIVE: This scoping review aimed to examine the co-creation practice used when developing NPIs for people with COPD. METHODS: This review followed Arksey and O'Malley scoping review framework and was reported according to the PRISMA-ScR framework. The search included PubMed, Scopus, CINAHL, and Web of Science Core Collection. Studies reporting on the process and/or analysis of applying co-creation practice in developing NPIs for people with COPD were included. RESULTS: 13 articles complied with the inclusion criteria. Limited creative methods were reported in the studies. Facilitators described in the co-creation practices included administrative preparations, diversity of stakeholders, cultural considerations, employment of creative methods, creation of an appreciative environment, and digital assistance. Challenges around the physical limitations of patients, the absence of key stakeholder opinions, a prolonged process, recruitment, and digital illiteracy of co-creators were listed. Most of the studies did not report including implementation considerations as a discussion point in their co-creation workshops. CONCLUSION: Evidence-based co-creation in COPD care is critical for guiding future practice and improving the quality of care delivered by NPIs. This review provides evidence for improving systematic and reproducible co-creation. Future research should focus on systematically planning, conducting, evaluating, and reporting co-creation practices in COPD care.

To Act or Not to Act-a Sense of Control Is Important for People With Chronic Obstructive Pulmonary Disease to Increase Physical Activity: Grounded Theory Study.

BACKGROUND: Among people with chronic obstructive pulmonary disease (COPD), low level of daily physical activity (PA) is the main risk factors for developing cardiovascular, metabolic, and musculoskeletal comorbidities. Increasing PA in people with COPD is complex as PA behavior itself is complex and multifaceted, including personal, physiological, and psychological elements as well as social and environmental factors. Although eHealth solutions such as web-based support or websites have shown positive effects on PA in people with COPD, the results are inconclusive, and it is still unclear how eHealth solutions might be used to support positive changes in PA behavior in people with COPD. OBJECTIVE: This study aimed to explore the perceptions of increasing objective PA when using a web-based eHealth tool among people with COPD. METHODS: This study was part of a pragmatic randomized controlled trial with in-depth interviews between the 3- and 12-month follow-ups. The methodology used was constructivist grounded theory. All sampling included participants from the randomized controlled trial intervention group, that is, participants who had access to the eHealth tool in question and agreed to be contacted for an in-depth interview. Inclusion of participants continued until data saturation was reached, resulting in an inclusion of 13 (n=7, 54% women) participants aged between 49 and 84 years and living in 8 municipalities in Middle and Northern Sweden. Two interviews were conducted face-to-face, and the remaining interviews were conducted via telephone. All interviews were recorded using a Dictaphone. RESULTS: The analysis resulted in 3 main categories: welcoming or not welcoming action, having or lacking resources, and lowering the threshold. The first 2 categories contain barriers and facilitators, whereas the third category contains only facilitators. The categories lead to the more latent theme Perceiving enough control to enable action, meaning that it seems that perceiving the right amount of control is essential to maintain or increase the level of PA when using an eHealth tool among patients with COPD. However, the right amount of control seemed to depend on the individual (and context) in question. CONCLUSIONS: The core category indicates that a need for a certain sense of control was interpreted as necessary for increasing the PA level as well as for using an eHealth tool to help increase the PA level. The eHealth tool seemed to strengthen or weaken the perception of control by either providing support or by being too demanding on the user. Perceptions varied depending on other environmental factors. The Fogg Behavior Model illustrated how motivational levels, ability levels, and functional triggers interact within our findings. Thus, this study provides further evidence for the importance of empowering the patients to boost their level of agency and their ability to improve PA levels. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2019-030788.

Preferences for an eHealth tool to support physical activity and exercise training in COPD: a qualitative study from the viewpoint of prospective users.

BACKGROUND: Despite well-known positive effects of pulmonary rehabilitation, access is limited. New strategies to improve access are advocated, including the use of eHealth tools. OBJECTIVES: The aim of this study was to explore prospective users' preferences for an eHealth tool to support the self-management of physical activity and exercise training in COPD. METHODS: A qualitative research design was applied. Data was collected in six, audio recorded, digital co-creation workshops, which were guided by a participatory and appreciative action and reflection approach. A total of 17 prospective users took part in the process, including people with COPD (n = 10), relatives (n = 2), health care givers (n = 4) and a patient organization representative (n = 1). During the workshops, pre-selected relevant topics to exploring end-users' preferences for eHealth support in self-management in COPD were discussed. The workshops were recorded and transcribed. Data was analysed using inductive qualitative content analysis. RESULTS: The overarching theme "fusing with, rather than replacing existing support structures" was uncovered when the two-sided relationship between positive expectations towards digital solutions and the fear of losing access to established rehabilitation systems, emerged in the discussions. Three categories were identified, focused on wishes for an evidence-based support platform of information about COPD, a well-designed eHealth tool including functionalities to motivate in the self-management of physical activity and exercise training, and requirements of various forms of support. Co-creators believed that there were clear benefits in combining the best of digital and existing support systems. CONCLUSIONS: Co-creators viewed an eHealth tool including support for physical activity and exercise training as a valuable digital complement to the now existing rehabilitation services. A future eHealth tool needs to focus on user-friendliness and prospective users's requests.

[Exercise training can improve dyspnea among persons with COPD and IPF]. / Fysisk aktivitet kan reducera dyspné vid KOL och lungfibros.

This article presents updated data regarding exercise training among persons with chronic obstructive pulmonary disease (COPD) and idiopathic pulmonary fibrosis (IPF). Persons with stable COPD and IPF can improve quality of life, physical capacity and dyspnea after a period of exercise training. Persons with COPD exacerbation can improve quality of life and physical capacity, and decrease hospital re-admissions, if they start physical activity directly after the exacerbation. Persons with stable COPD and IPF should be recommended aerobic and muscle strengthening  training. For those with balance impairments balance training is also recommended. Persons with COPD exacerbation should be recommended activities of daily living (ADL) followed by muscle strengthening training and then aerobic training in the early recovery phase. Diagnosis-specific advice includes individually tailored exercise training, physical activity recommendations, breathing techniques, and that oxygen saturation during exercise should be ≥88 percent in COPD and ≥85 percent in IPF.

Evaluation of a Digital COPD Education Program for Healthcare Professionals in Long-Term Care - A Mixed Methods Study.

Background: Lack of routines and competence among healthcare professionals have been reported as barriers to COPD management in long-term care. Online education could be used as a strategy to make COPD education more accessible. Purpose: The aim of this study was to evaluate a digital COPD education program for healthcare professionals in long-term care regarding feasibility, knowledge and working procedures. Methods: A randomized controlled feasibility trial with a convergent mixed methods design was conducted. Two municipalities in Sweden were randomized to intervention (n=20) or control (n=17). The intervention was a digital COPD education program accessible for three months. Data was collected through questionnaires on COPD-specific knowledge, conceptual knowledge, feasibility and usage of the COPD Web platform. Repeated individual interviews using a semi-structured interview guide was also performed. Quantitative and qualitative findings were merged using a mixed methods design. Results: The digital COPD education program appears feasible based on the expressed satisfaction of the healthcare workers and their reports that it supported them in their work. Across questionnaires, objective COPD-specific knowledge increased by 14 to 16 percentage points in the intervention group compared to 0 to 6 percentage points in the control group (p=0.001). The objective increase in COPD-specific knowledge was also captured in the interviews, where a perceived increase in knowledge led to increased security and focus on COPD management. Few changes in working procedures were expressed, but participants felt that attention was raised regarding COPD and the importance of preventive healthcare services. In addition, increased knowledge of healthcare services provided by other involved professions was emphasized, leading to discussions with other professions in relation to COPD management. Conclusion: A digital COPD education program is feasible and can increase the COPD-specific knowledge of healthcare professionals in long-term care, leading to increased focus on COPD-related issues. More comprehensive measures, including organizational changes, might be needed to change working procedures.

Participatory methods in a digital setting: experiences from the co-creation of an eHealth tool for people with chronic obstructive pulmonary disease.

BACKGROUND: Using participatory methods to engage end-users in the development and design of eHealth is important to understand and incorporate their needs and context. Within participatory research, recent social distancing practice has forced a transition to digital communication platforms, a setting that warrants deeper understanding. The aim of this study was to describe the experiences of, and evaluate a digital co-creation process for developing an eHealth tool for people with chronic obstructive pulmonary disease (COPD). METHODS: The co-creation was guided by Participatory appreciative action and reflection, where a convenience sample (n = 17), including persons with COPD, health care professionals, relatives and a patient organization representative participated in six digital workshops. User instructions, technical equipment, and skilled support were provided if necessary. Workshops centred around different topics, with pre-recorded films, digital lectures and home assignments to up-skill participants. Process validity, experiences and ownership in the co-creation process were evaluated by repeated respondent validation, member checking, questionnaires and by assessing attendance. Data was analysed quantitatively or qualitatively as appropriate. RESULTS: The co-creators were in general satisfied with the digital format of the workshops. Mean attendance and perceived engagement in workshops was high and the experience described as enjoyable. Engagement was facilitated by up-skilling activities and discussions in small groups. Few had used digital communication previously, and feelings ranging from excitement to concern were expressed initially. Technical issues, mainly audio related, were resolved with support. At completion, skills using equipment and digital platform surpassed expectations. Few disadvantages with the digital format were identified, and advantages included reduced travel, time efficiency and reduced infection risk. CONCLUSIONS: Experiences of digital co-creation were overwhelmingly positive, despite initial barriers related to computer naivety and use of digital equipment and platforms. The high level of satisfaction, engagement, attendance rates, and agreement between individual and group views suggests that a digital co-creation process is a feasible method. Several important success factors were identified, such as the provision of information and education on discussion topics in advance of workshops, as well as the smaller group discussions during workshops. The knowledge gained herein will be useful for future digital co-creation processes.

Access to, use, knowledge, and preferences for information technology and technical equipment among people with chronic obstructive pulmonary disease (COPD) in Sweden. A cross-sectional survey study.

BACKGROUND: The use of information technology can make pulmonary rehabilitation interventions in people with chronic obstructive pulmonary disease (COPD) more flexible and thereby has the potential to reach a larger proportion of the population. However, the success of using information technology in pulmonary rehabilitation is dependent on the end-user's competence in information technology and access to the Internet. The aim was to describe the access to, and the use, knowledge, and preferences of information technology and technical equipment among people with COPD. METHODS: Telephone interviews were conducted using a standardised questionnaire on information technology and technical devises addressing the household, access to and usage of the Internet, contact with authorities, e-commerce, security, the workplace, digital competence, and disabilities. Questions were also posed regarding participants' views on a future eHealth tool for COPD, appropriate content, and the potential likelihood for them to use an eHealth tool for exercise training. RESULTS: In total 137 persons agreed to participate, 17 dropped out resulting in 120 included participants (response rate 88%). The participants (86 women) were aged 51 to 92 years (mean: 72.5), and all severity grades of COPD according to GOLD A-D were represented. Over 90% had access to the Internet. Smartphones were used by 81%, and over 90% used apps. Participants had high knowledge of how to use the Internet, 91% had used the Internet during the last 3 months, 85% almost every day. The most common requests for a future eHealth tool for COPD were evidence-based and trustworthy information on COPD, (including medication, exercise training, inhalation and breathing techniques), communication (chat) with others and with health carers. Access to individually adjusted exercise training, and support, (motivation via prompts, chat rooms, digital information board) was also desired. CONCLUSIONS: The present study showed that people with COPD in Sweden have high access and ability to use the Internet and information technology. They are frequent users and most of them take part in the digital society, even to a higher extent than the general population. The results show that the use of an eHealth tool could be a suitable strategy for people with COPD.

Experiences and Factors Affecting Usage of an eHealth Tool for Self-Management Among People With Chronic Obstructive Pulmonary Disease: Qualitative Study.

BACKGROUND: Self-management strategies are regarded as highly prioritized in chronic obstructive pulmonary disease (COPD) treatment guidelines. However, individual and structural barriers lead to a staggering amount of people with COPD that are not offered support for such strategies, and new approaches are urgently needed to circumvent these barriers. A promising way of delivering health services such as support for self-management strategies is the use of eHealth tools. However, there is a lack of knowledge about the usage of, and factors affecting the use of, eHealth tools over time in people with COPD. OBJECTIVE: This study aimed, among people with COPD, to explore and describe the experiences of an eHealth tool over time and factors that might affect usage. METHODS: The eHealth tool included information on evidence-based self-management treatment for people with COPD, including texts, pictures, videos as well as interactive components such as a step registration function with automatized feedback. In addition to the latter, automated notifications of new content and pedometers were used as triggers to increase usage. After having access to the tool for 3 months, 16 individuals (12 women) with COPD were individually interviewed. At 12 months' access to the tool, 7 (5 women) of the previous 16 individuals accepted a second individual interview. Data were analyzed using qualitative content analysis. User frequency was considered in the analysis, and participants were divided into users and nonusers/seldom users depending on the number of logins and minutes of usage per month. RESULTS: Three main categories, namely, ambiguous impact, basic conditions for usage, and approaching capability emerged from the analysis, which, together with their subcategories, reflect the participants' experiences of using the eHealth tool. Nonusers/seldom users (median 1.5 logins and 1.78 minutes spent on the site per month) reported low motivation, a higher need for technical support, a negative view about the disease and self-management, and had problematic health literacy as measured by the Communicative and Critical Health Literacy Scale (median [range] 154 [5-2102]). Users (median 10 logins and 43 minutes per month) felt comfortable with information technology (IT) tools, had a positive view on triggers, and had sufficient health literacy (median [range] 5 [5-1400]). Benefits including behavior changes were mainly expressed after 12 months had passed and mainly among users. CONCLUSIONS: Findings of this study indicate that the level of motivation, comfortability with IT tools, and the level of health literacy seem to affect usage of an eHealth tool over time. Besides, regarding behavioral changes, gaining benefits from the eHealth tool seems reserved for the users and specifically after 12 months, thus suggesting that eHealth tools can be suitable media for supporting COPD-specific self-management skills, although not for everyone or at all times. These novel findings are of importance when designing new eHealth tools as well as when deciding on whether or not an eHealth tool might be appropriate to use if the goal is to support self-management among people with COPD. TRIAL REGISTRATION: ClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2017-016851.

Groping around in the dark for adequate COPD management: a qualitative study on experiences in long-term care.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is one of the most common and deadliest chronic diseases worldwide. Since COPD is a chronic and progressive disease, treatment is necessary throughout life. For people with COPD who cannot live independently, long-term care facilities are often required. However, knowledge is very limited about aspects of importance for effective COPD management in these settings in accordance with current treatment guidelines. The aim of this study was to explore aspects of importance in long-term care facilities for providing interventions according to treatment guidelines for people with COPD, from the perspective of healthcare professionals, in an effort to prove novel knowledge that could be used to facilitate implementation of treatment guidelines in these settings. METHODS: A qualitative study was performed in northern Sweden. In Sweden, municipalities are responsible for providing long-term care. Interviews with 36 healthcare professionals (nurses, physiotherapists, occupational therapists and dieticians) in municipal healthcare were conducted and analysed using qualitative content analysis with triangulation by the authors. RESULTS: The overarching theme that emerged from the analysis was Groping around in the dark for adequate COPD management. This represents healthcare professionals' experiences of working with a complex diagnosis somewhat overlooked in the municipal healthcare, an underdog in the healthcare system. The groping around in the dark theme further represents the healthcare professionals' lack of COPD-related competence, lack of interprofessional collaboration, and insufficient communication with the county council. The fragile group of people with COPD and their relatives were considered in need of support adapted to their context, but routines and resources for COPD management were limited. This lack of routines and resources also resulted in professionals being pragmatic and adopting short-term solutions without focusing on specific needs related to the diagnosis. CONCLUSIONS: The COPD management in long-term care settings showed several insufficiencies, indicating a large gap between clinical practice and treatment guidelines for COPD. It is crucial to improve COPD management in long-term care settings. Consequently, several actions are needed, such as increasing professional competence, establishing new routines, acknowledging and making COPD a higher priority, as well as adapting treatment guidelines to the context.

Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD.

Meaningful and high-quality interactions between people with COPD and healthcare professionals are essential to accomplish effective and efficient self-management.This study's aim was to explore how people with COPD experience COPD-related interactions with healthcare professionals in primary care, and how these interactions influence their self-management and how they cope with their disease.Interviews were performed with eight women and five men with COPD, and grounded theory guided data collection and analysis.The analysis resulted in a theoretical model and the core category (Re)acting in an ambiguous interaction, representing a dynamic process in which healthcare priorities, healthcare professionals' attitudes and participants' personal emotions were important for the participants' experiences of interactions, and how they managed and coped with their disease.Mutually respectful and regular relationships with healthcare professionals, along with a personal positive view of life, empowered and facilitated participants to accept and manage their disease. In contrast, experiences of being deprioritized and not taken seriously, along with experiences of fear and stigma, disempowered and inhibited participants in making healthcare contacts or forced them to compensate for experienced insufficiencies in primary care.In order to facilitate meaningful and high-quality interactions and enhance patient-provider partnerships in primary care, there is a need to improve the status of COPD, as well as to increase competence in COPD management among healthcare professionals and support the empowerment of people with COPD. Findings from this study could guide the implementation of improved self-management support in primary care for COPD and other chronic conditions.

Use of an eHealth tool for exercise training and online contact in people with severe chronic obstructive pulmonary disease on long-term oxygen treatment: A feasibility study.

Technology developments and demand for flexibility in health care and in contact with the health care system are two factors leading to increased use of eHealth solutions. The use of eHealth has been shown to have positive effects in people with chronic obstructive pulmonary disease, but the full potential for this group needs to be explored. Therefore, the aim was to evaluate the feasibility of an eHealth tool used for exercise training and online contacts for people with severe chronic obstructive pulmonary disease. The 10-week intervention included an eHealth tool for exercise training in home environment and regular online contacts, as well as weekly e-rounds for health care professionals. Seven of the nine participants completed the study. The eHealth tool was found to be feasible for e-rounds, exercise training and online contacts. Participants could manage the tool and adhere to training; positive effects were shown, and no adverse events occurred. Technical functions need to be improved.

Perceptions of Home Telemonitoring Use Among Patients With Chronic Obstructive Pulmonary Disease: Qualitative Study.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a major health problem and an economic burden globally. There is growing interest in how electronic health (eHealth) can be used to provide efficient health care. Telemonitoring, where the patient's health-related data is transmitted to a health care provider, can be used to detect early signs of exacerbations. A successful implementation of telemonitoring systems into clinical practice requires in-depth knowledge of the users' preferences. OBJECTIVE: The aim of this study was to explore perceptions of the use of a home telemonitoring system among patients with COPD. METHODS: Semistructured individual interviews were carried out with 8 women and 5 men who were participants in a project aimed at developing and evaluating a telemonitoring system. The web-based telemonitoring system measured pulmonary function, subjective symptoms, and oxygen saturation. Participants were interviewed after having used the system for 2-4 months. Interview transcripts were analyzed with qualitative content analysis. RESULTS: The analysis resulted in the theme A transition toward increased control and security and four categories: using with (in)security, affecting technical concern or confidence, providing easy access to health care, and increasing control over the disease. The participants reported various perceptions of using the telemonitoring system. They expressed initial feelings of insecurity, both in terms of operating the system and in terms of their disease. However, the practical management of the telemonitoring system became easier with time; the participants gradually gained confidence and improved their self-management. New technology was perceived as an important complement to existing health care, but the importance of maintaining a human contact in real life or through the telemonitoring system was emphasized. CONCLUSIONS: This study captured a transition among the participants from being insecure and experiencing technical concerns to acquiring technical confidence and improving disease management. Telemonitoring can be a valuable complement to health care, leading to increased self-knowledge, a sense of security, and improved self-management. Suggestions to improve the further development and implementation of telemonitoring systems include better patient education and the involvement of end users in the technical development process. Additional research is needed, particularly in the design of user-friendly systems, as well as in developing tools to predict which patients are most likely to find the equipment useful, as this may result in increased empowerment, improved quality of life, reduced costs, and a contribution to equity in health.

How stable is lung function in patients with stable chronic obstructive pulmonary disease when monitored using a telehealth system? A longitudinal and home-based study.

BACKGROUND: Many telehealth systems have been designed to identify signs of exacerbations in patients with chronic obstructive pulmonary disease (COPD), but few previous studies have reported the nature of recorded lung function data and what variations to expect in this group of individuals. The aim of the study was to evaluate the nature of individual diurnal, day-to-day and long-term variation in important prognostic markers of COPD exacerbations by employing a telehealth system developed in-house. METHODS: Eight women and five men with COPD performed measurements (spirometry, pulse oximetry and the COPD assessment test (CAT)) three times per week for 4-6 months using the telehealth system. Short-term and long-term individual variations were assessed using the relative density and weekly means respectively. Quality of the spirometry measurements (forced expiratory volume in one second (FEV1) and inspiratory capacity (IC)) was assessed employing the criteria of American Thoracic Society (ATS)/European Respiratory Society (ERS) guidelines. RESULTS: Close to 1100 measurements of both FEV1 and IC were performed during a total of 240 patient weeks. The two standard deviation ranges for intra-individual short-term variation were approximately ±210 mL and ± 350 mL for FEV1 and IC respectively. In long-term, spirometry values increased and decreased without notable changes in symptoms as reported by CAT, although it was unusual with a decrease of more than 50 mL per measurement of FEV1 between three consecutive measurement days. No exacerbation occurred. There was a moderate to strong positive correlation between FEV1 and IC, but weak or absent correlation with the other prognostic markers in the majority of the participants. CONCLUSIONS: Although FEV1 and IC varied within a noticeable range, no corresponding change in symptoms occurred. Therefore, this study reveals important and, to our knowledge, previously not reported information about short and long-term variability in prognostic markers in stable patients with COPD. The present data are of significance when defining criteria for detecting exacerbations using telehealth strategies.

Web-based support for self-management strategies versus usual care for people with COPD in primary healthcare: a protocol for a randomised, 12-month, parallel-group pragmatic trial.

INTRODUCTION: The use of adequate self-management strategies for people with chronic obstructive pulmonary disease (COPD) may increase the level of physical activity (PA), improve health-related quality of life (HRQoL) and reduce healthcare use. Whether web-based support in addition to prompts (email and SMS) could be used to promote self-management strategies to facilitate behaviour change in people with COPD is not clear. This clinical trial aims to generate evidence on the effect of a web-based solution, the COPD Web, in a cohort of people with COPD in a primary healthcare context. METHODS AND ANALYSIS: The overall design is a pragmatic randomised controlled trial with preassessments and postassessments (3 and 12 months) and an implementation and user experience evaluation. People with a diagnosis of COPD, treated in primary healthcare will be eligible for the study. A total of 144 participants will be enrolled through advertisment or by healthcare professionals at included primary healthcare units and, after fulfilled baseline assessment, randomised to either control or intervention group. All participants will receive usual care, a pedometer and a leaflet about the importance of PA. Participants in the intervention will, in addition, get access to the COPD Web, an interactive self-managed website that aims to support people with COPD in self-management strategies. They will also continuously get support from prompts with a focus on behaviour change.The effect on participants' PA, dyspnoea, COPD-related symptoms, HRQoL and health economics will be assessed using accelerometer and questionnaires. To identify enablers and barriers for the use of web-based support to change behaviour, semistructured interviews will be conducted in a subgroup of participants at the 3 months follow-up. ETHICS AND DISSEMINATION: Ethical approval has been received from the Regional Ethical Review Board in Umeå, Sweden. Dnr 2018-274 and dnr 2019-05572. Findings will be presented at conferences, submitted for publication in peer-reviewed journals and presented to the involved healthcare professionals, participants and patient organisations. TRIAL REGISTRATION NUMBER: NCT03746873.

Can the COPD web be used to promote self-management in patients with COPD in swedish primary care: a controlled pragmatic pilot trial with 3 month- and 12 month follow-up.

OBJECTIVE: Evaluate the feasibility of the COPD Web and its study design and study procedures and to increase the understanding of the potential effect of the tool in order to provide guidance for a future large scale trial. DESIGN: Parallel-group controlled pragmatic pilot trial. SUBJECTS: There was a total of 83 patients with COPD (mean age 70 ± 8 years with a forced expiratory volume in first second percent predicted of 60 ± 17%). The intervention group (n = 43) was introduced to and had access to the COPD Web in addition to usual care, while the control group (n = 40) received usual care alone. MAIN OUTCOME MEASURES: The feasibility of the COPD Web (i.e., if and how the COPD Web was used) was automatically collected through the website, while outcomes on health, conceptual knowledge, and physical activity (PA) were collected through questionnaires at baseline, 3 months and 12 months. RESULTS: At 3 months, 77% of the intervention group was considered users, and the majority of time spent on the site was related to PA and exercises and was spent during the first month (>80%). In addition, the intervention group reported increased PA (odds ratio [OR] = 4.4, P < .001), increased conceptual knowledge in five domains (OR = 2.6-4.2, all P < .05), and altered disease management strategies (e.g., increased PA) (OR ≥ 2.7 P < .05) in comparison to the control group. The latter was also different between groups at 12 months (OR = 3.7, P = .044). Knowledge of PA was correlated with level of PA (ρ = .425-.512, P < .05) as well as to the use of PA as a strategy to manage their disease (χ2 = 11.2-32.9, P < .05). CONCLUSION: Giving patients with COPD access to the COPD Web in addition to their ordinary primary care might be an effective shorter term (3 month) strategy to promote self-management. However, these results needs to be confirmed in a definitive large-scale trial. Key points Even though self-management strategies are an important part of chronic obstructive pulmonary disease (COPD) management, access to support for such strategies are limited for a large part of the COPD-population. Promoting self-management through the COPD Web might increase short-term levels of physical activity, promote conceptual knowledge and alter disease management strategies. The primary care COPD population in this study experienced limited impact of the disease in daily life, limited exertional dyspnea, and high generic quality-of-life, but vastly reduced levels of physical activity. A future large scale study should include strategies to encourage greater exposures to the COPD Web, including an extended analysis of factors associated with using or not using the tool over time and its impact on outcome measures, objective measures of conceptual knowledge, and physical activity, and it should include a large enough sample size to enable sub-group analyses and strategies to enhance recruitment.

Adults with congenital heart disease overestimate their physical activity level.

BACKGROUND: Physical activity reduces the risk of acquired cardiovascular disease, which is of great importance in patients with congenital heart disease (CHD). There are diverging data whether physical activity level (PAL) differs between patients with CHD and controls. Furthermore, it is unknown if PAL can be reliably assessed in patients with CHD using self-reported instruments. METHODS: Seventy-five patients with CHD (mean age 37.5 ±â€¯15.5 years, women n = 29 [38.7%]) and 42 age and sex matched controls completed the International Physical Activity Questionnaire (IPAQ) and carried the activity monitor Actiheart over 4 days. Time spent at ≥3 METS ≥21.4 min/day, i.e. reaching the WHO recommendation for PAL to promote health, was used as the outcome measure. Data on PAL obtained from IPAQ were compared with Actiheart. RESULTS: The proportion of individuals reaching target PAL according to IPAQ was similar in patients with CHD and controls (70.7%vs.76.2%, p = 0.52) as well as between patients with simple and complex lesions. There was an overall difference between IPAQ and Actiheart in detecting recommended PAL (72.6%vs.51.3%, p < 0.001). In a subgroup analysis, this difference was also detected in patients but was borderline for controls. The negative predictive value for IPAQ in detecting insufficient PAL was higher in patients than in controls (73%vs.40%). CONCLUSIONS: The proportion of persons reaching sufficient PAL to promote health was similar in patients and controls. The self-reported instrument overestimated PAL in relation to objective measurements. However, with a high negative predictive value, IPAQ is a potentially useful tool for detecting patients with insufficient PAL.

Usefulness and Relevance of an eHealth Tool in Supporting the Self-Management of Chronic Obstructive Pulmonary Disease: Explorative Qualitative Study of a Cocreative Process.

BACKGROUND: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives. OBJECTIVE: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers. METHODS: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis. RESULTS: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge. CONCLUSIONS: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

Exercise self-efficacy in adults with congenital heart disease.

BACKGROUND: Physical activity improves health, exercise tolerance and quality of life in adults with congenital heart disease (CHD), and exercise training is in most patients a high-benefit low risk intervention. However, factors that influence the confidence to perform exercise training, i.e. exercise self-efficacy (ESE), in CHD patients are virtually unknown. We aimed to identify factors related to low ESE in adults with CHD, and potential strategies for being physically active. METHODS: Seventy-nine adults with CHD; 38 with simple lesions (16 women) and 41 with complex lesions (17 women) with mean age 36.7 ± 14.6 years and 42 matched controls were recruited. All participants completed questionnaires on ESE and quality of life, carried an activity monitor (Actiheart) during four consecutive days and performed muscle endurance tests. RESULTS: ESE in patients was categorised into low, based on the lowest quartile within controls, (≤ 29 points, n = 34) and high (> 29 points, n = 45). Patients with low ESE were older (42.9 ± 15.1 vs. 32.0 ± 12.4 years, p = 0.001), had more complex lesions (65% vs. 42%, p = 0.05) more often had New York Heart Association functional class III (24% vs. 4%, p = 0.01) and performed fewer shoulder flexions (32.5 ± 15.5 vs. 47.7 ± 25.0, p = 0.001) compared with those with high ESE. In a logistic multivariate model age (OR; 1.06, 95% CI 1.02-1.10), and number of shoulder flexions (OR; 0.96, 95% CI 0.93-0.99) were associated with ESE. CONCLUSION: In this study we show that many adults with CHD have low ESE. Age is an important predictor of low ESE and should, therefore, be considered in counselling patients with CHD. In addition, muscle endurance training may improve ESE, and thus enhance the potential for being physically active in this population.