scholarly journals Assessing the Needs and Perspectives of Patients With Asthma and Chronic Obstructive Pulmonary Disease on Patient Web Portals: Focus Group Study (Preprint)

2017 ◽  
Author(s):  
Esther Metting ◽  
Aaltje Jantine Schrage ◽  
Janwillem WH Kocks ◽  
Robbert Sanderman ◽  
Thys van der Molen

BACKGROUND As accessibility to the internet has increased in society, many health care organizations have developed patient Web portals (PWPs), which can provide a range of self-management options to improve patient access. However, the available evidence suggests that they are used inefficiently and do not benefit patients with low health literacy. Asthma and chronic obstructive pulmonary disease (COPD) are common chronic diseases that require ongoing self-management. Moreover, patients with COPD are typically older and have lower health literacy. OBJECTIVE This study aimed to obtain and present an overview of patients’ perspectives of PWPs to facilitate the development of a portal that better meets the needs of patients with asthma and COPD. METHODS We performed a focus group study using semistructured interviews in 3 patient groups from the north of the Netherlands who were recruited through the Dutch Lung Foundation. Each group met 3 times for 2 hours each at a 1-week interval. Data were analyzed with coding software, and patient descriptors were analyzed with nonparametric tests. The consolidated criteria for reporting qualitative research were followed when conducting the study. RESULTS We included 29 patients (16/29, 55% male; mean age 65 [SD 10] years) with COPD (n=14), asthma-COPD overlap (n=4), asthma (n=10), or other respiratory disease (n=1). There was a large variation in the internet experience; some patients hardly used the internet (4/29, 14%), whereas others used internet >3 times a week (23/29, 79%). In general, patients were positive about having access to a PWP, considering access to personal medical records as the most important option, though only after discussion with their physician. A medication overview was considered a useful option. We found that communication between health care professionals could be improved if patients could use the PWP to share information with their health care professionals. However, as participants were worried about the language and usability of portals, it was recommended that language should be adapted to the patient level. Another concern was that disease monitoring through Web-based questionnaire use would only be useful if the results were discussed with health care professionals. CONCLUSIONS Participants were positive about PWPs and considered them a logical step. Today, most patients tend to be better educated and have internet access, while also being more assertive and better informed about their disease. A PWP could support these patients. Our participants also provided practical suggestions for implementation in current and future PWP developments. The next step will be to develop a portal based on these recommendations and assess whether it meets the needs of patients and health care providers.

2006 ◽  
Vol 13 (7) ◽  
pp. 362-368 ◽  
Author(s):  
S Costi ◽  
D Brooks ◽  
RS Goldstein

BACKGROUND: Prompt treatment of acute exacerbations (AEs) in chronic obstructive pulmonary disease (COPD) improves quality of life and reduces the use of health care resources. Although patient self-management through an individualized action plan (AP) can help with early initiation of therapy, its use is critically dependent on the patient recognizing the features of an exacerbation.OBJECTIVE: To describe COPD patients’ experiences with AEs, as well as health care professionals’ (HCPs’) attitudes toward the provision of an AP as part of self-management education.METHODS: Thirty-two patients with moderate to severe COPD who recently experienced at least one AE, and 22 HCPs with experience in the management of COPD, were interviewed.RESULTS: The most common symptoms and signs associated with an AE were difficulty breathing (84%), fatigue (81%), cold symptoms (59%), changes in sputum colour (53%) or amount (47%), and cough (44%). The main precipitants identified were environmental triggers (47%), infective agents (31%), excessive activities (25%), emotional factors (16%) and changes in medications (9%). Strategies for dyspnea relief included increasing medications (72%), resting (56%), avoiding exposure to environmental triggers (41%) and performing breathing exercises (31%). Patients supported the use of an AP and recommended that it be individualized for symptoms and triggers, and that it should also include strategies for addressing anxiety and depression. HCPs also supported the use of an individualized AP and recommended that it be regularly revisited, depending on the patient’s disease severity.CONCLUSIONS: Patients’ experiences with AEs do not always conform to a standard medical definition. Therefore, an understanding of their experience is of value in the design of an individualized AP. HCPs support the use of an AP that emphasizes self-management of exacerbations as well as general COPD management.


2018 ◽  
Author(s):  
Malin Tistad ◽  
Sara Lundell ◽  
Maria Wiklund ◽  
André Nyberg ◽  
Åsa Holmner ◽  
...  

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.


10.2196/16343 ◽  
2020 ◽  
Vol 8 (6) ◽  
pp. e16343 ◽  
Author(s):  
Sara Lundell ◽  
Mari Modig ◽  
Åsa Holmner ◽  
Karin Wadell

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.


2020 ◽  
Vol 26 (4) ◽  
pp. 3184-3200
Author(s):  
Pernilla Sönnerfors ◽  
Karin Wadell ◽  
Ing-Mari Dohrn ◽  
André Nyberg ◽  
Michael Runold ◽  
...  

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.


2015 ◽  
Vol 95 (10) ◽  
pp. 1387-1396 ◽  
Author(s):  
Pat G. Camp ◽  
W. Darlene Reid ◽  
Frank Chung ◽  
Ashley Kirkham ◽  
Dina Brooks ◽  
...  

Background Exercise is recommended for people with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD), yet there is little information to guide safe and effective mobilization and exercise for these patients. Objectives The purpose of this study was to develop a clinical decision-making tool to guide health care professionals in the assessment, prescription, monitoring, and progression of mobilization and therapeutic exercise for patients with AECOPD. Design and Methods A 3-round interdisciplinary Delphi panel identified and selected items based on a preselected consensus of 80%. These items were summarized in a paper-based tool titled Mobilization in Acute Exacerbations of Chronic Obstructive Pulmonary Disease (AECOPD-Mob). Focus groups and questionnaires were subsequently used to conduct a sensibility evaluation of the tool. Results Nine researchers, 13 clinicians, and 7 individuals with COPD identified and approved 110 parameters for safe and effective exercise in AECOPD. These parameters were grouped into 5 categories: (1) “What to Assess Prior to Mobilization,” (2) “When to Consider Not Mobilizing or to Discontinue Mobilization,” (3) “What to Monitor During Mobilization for Patient Safety,” (4) “How to Progress Mobilization to Enhance Effectiveness,” and (5) “What to Confirm Prior to Discharge.” The tool was evaluated in 4 focus groups of 18 health care professionals, 90% of whom reported the tool was easy to use, was concise, and would guide a health care professional who is new to the acute care setting and working with patients with AECOPD. Limitations The tool was developed based on published evidence and expert opinion, so the applicability of the items to patients in all settings cannot be guaranteed. The Delphi panel consisted of health care professionals from Canada, so items may not be generalizable to other jurisdictions. Conclusions The AECOPD-Mob provides practical and concise information on safe and effective exercise for the AECOPD population for use by the new graduate or novice acute care practitioner.


2017 ◽  
Author(s):  
Mark W Orme ◽  
Amie E Weedon ◽  
Paula M Saukko ◽  
Dale W Esliger ◽  
Mike D Morgan ◽  
...  

BACKGROUND Targeting sedentary time post exacerbation may be more relevant than targeting structured exercise for individuals with chronic obstructive pulmonary disease. Focusing interventions on sitting less and moving more after an exacerbation may act as a stepping stone to increase uptake to pulmonary rehabilitation. OBJECTIVE The aim of this paper was to conduct a randomized trial examining trial feasibility and the acceptability of an education and self-monitoring intervention using wearable technology to reduce sedentary behavior for individuals with chronic obstructive pulmonary disease admitted to hospital for an acute exacerbation. METHODS Participants were recruited and randomized in hospital into 3 groups, with the intervention lasting 2 weeks post discharge. The Education group received verbal and written information about reducing their time in sedentary behavior, sitting face-to-face with a study researcher. The Education+Feedback group received the same education component along with real-time feedback on their sitting time, stand-ups, and steps at home through a waist-worn inclinometer linked to an app. Patients were shown how to use the technology by the same study researcher. The inclinometer also provided vibration prompts to encourage movement at patient-defined intervals of time. Patients and health care professionals involved in chronic obstructive pulmonary disease exacerbation care were interviewed to investigate trial feasibility and acceptability of trial design and methods. Main quantitative outcomes of trial feasibility were eligibility, uptake, and retention, and for acceptability, were behavioral responses to the vibration prompts. RESULTS In total, 111 patients were approached with 33 patients recruited (11 Control, 10 Education, and 12 Education+Feedback). Retention at 2-week follow-up was 52% (17/33; n=6 for Control, n=3 for Education, and n=8 for Education+Feedback). No study-related adverse events occurred. Collectively, patients responded to 106 out of 325 vibration prompts from the waist-worn inclinometer (32.62%). Within 5 min of the prompt, 41% of responses occurred, with patients standing for a mean 1.4 (SD 0.8) min and walking for 0.4 (SD 0.3) min (21, SD 11, steps). Interviews indicated that being unwell and overwhelmed after an exacerbation was the main reason for not engaging with the intervention. Health care staff considered reducing sedentary behavior potentially attractive for patients but suggested starting the intervention as an inpatient. CONCLUSIONS Although the data support that it was feasible to conduct the trial, modifications are needed to improve participant retention. The intervention was acceptable to most patients and health care professionals. CLINICALTRIAL International Standard Randomized Controlled Trial Number (ISRCTN) 13790881; http://www.isrctn.com/ISRCTN13790881 (Archived by WebCite at http://www.webcitation.org/6xmnRGjFf)


2019 ◽  
Vol 42 (6) ◽  
pp. 423-430 ◽  
Author(s):  
Wendy S. Bauer ◽  
Rachel F. Schiffman

Individuals with chronic obstructive pulmonary disease (COPD) struggle with effective self-management, contributing to poor health outcomes and costly health care. More research is needed to understand the factors influencing COPD self-management better in order to improve outcomes and reduce health care costs for those living with this prevalent chronic illness. The purpose of this article is to describe factors influencing community-dwelling adults’ COPD self-management. In-depth interviews were conducted with 28 people living with COPD. Braun and Clarke’s thematic analysis approach was used to analyze interview data, and it resulted in the identification of themes providing insight into COPD self-management as described by those living with the disease. Specifically, factors impacting engagement in treatment recommendations are described. These findings have implications for informing evidence-based recommendations for self-management support and improving the quality of care provided to those with COPD.


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