Source: International Congress 2016 – Non-inflammatory assessment of airway disorders
Disease area: Airway diseases

Abstract

Rationale: RAPSODI is a newly developed Dutch severe asthma registry, aimed at improving quality of care by systematically collecting and evaluating clinical data, effectiveness of novel treatments, side effects and costs. We wondered whether patients would be willing to participate in the registry by periodically completing questionnaires through a web-based interactive platform, and whether this would be feasible, and sustainable.Methods: 24 adult patients (12 severe asthma, 12 mild-moderate asthma) were consecutively recruited from an outpatient asthma clinic and asked to complete 4 asthma-related questionnaires through a web-based platform. Beforehand and afterwards they were asked about their willingness to participate in the registry, the (expected) time to complete the questionnaires, and how often they would be prepared to enter data.Results: 91.7% of patients were willing to participate. Willingness was similar between patients with severe and mild-moderate asthma. Time for completion of the RAPSODI questionnaires was shorter than patients expected beforehand (20 min vs 12.5 min respectively; p<0.01). Severe asthma patients were willing to complete the questionnaires more frequent than mild-moderate asthmatics (4 times/yr vs 2 times/yr; p=0.045), and even more frequent (up to 12 times/yr) after actual completion of the questionnaires.Conclusion: Patients with asthma are willing to participate in an interactive disease specific registry, and those with severe asthma are prepared to spend more time on the registry compared to patients with mild asthma. This shows that regular data entry by patients with severe asthma through a web-based platform is sustainable and feasible.


Rating:

Share or cite this content

Citations should be made in the following way:
Duco Schippers (Amsterdam, Netherlands), Duco Schippers, P.W. Hekking, J.K. Sont, E.H.D. Bel. Are asthma patients willing to participate in an interactive web-based disease registry?. Eur Respir J 2016; 48: Suppl. 60, 1025

Member's Comments

No comment yet.

Related content which might interest you: Ownership of written asthma action plans in a large Australian survey Source: Annual Congress 2013 –Management of respiratory diseases in primary care Year: 2013 Automated telephone message service for people with uncontrolled asthma or COPD Source: Virtual Congress 2020 – Diagnosis and management of COPD Year: 2020 What are reasons for non-adherence in patients with asthma? A 24 weeks prospective telephone follow-up research Source: Annual Congress 2013 –Treatment and adherence to treatment of respiratory disease Year: 2013 How do asthma and COPD patients think about a patient web portal? Results from a focusgroup study Source: International Congress 2014 – Management of asthma and other respiratory diseases in primary care Year: 2014 Internet-based home asthma telemonitoring - can patients handle the technology? Source: Annual Congress 2007 - Primary care: information technology: new ways of monitoring in primary care Year: 2007 Possession of written plans in case of asthma attack among asthma patients. A community pharmacy-based survey Source: Eur Respir J 2007; 30: Suppl. 51, 233s Year: 2007 FeNO and web-based monitoring in paediatric asthma managemant; the BATMAN study Source: Annual Congress 2013 –The best of paediatric asthma and allergy Year: 2013 A national database study of the effectiveness of switching real-life asthma patients to fostair Source: International Congress 2015 – New data on established treatments for asthma, COPD and bronchiectasis Year: 2015 Mortality rates in individuals with asthma, COPD and ACOS in a large population-based cohort: Is gender important? Source: International Congress 2016 – Asthma, COPD, and ACOS: physical activity, dietary aspects, and diseases burden Year: 2016 Self-management in COPD: How well are patients trained and what actions do they conduct in practice? Source: International Congress 2016 – Targeting care, pulmonary rehabilitation, management, and self-management of COPD exacerbations in primary care Year: 2016 Work related symptoms of adult patients with asthma: A multicenter, national, questionnaire based study Source: International Congress 2015 – Work, environment and the epidemiology of asthma Year: 2015 Online Asthma/COPD self-management diaries: A qualitative study into patient and professional experiences with persistent users and quitters Source: International Congress 2014 – How to best educate students, colleagues and patients: the most recent advances in respiratory medical education Year: 2014 Asthma, asthma medication and training intensity in Swedish competitive athletes: An internet-based survey Source: International Congress 2016 – Pathophysiological mechanisms at different levels: lung, airways, muscles and symptom perception Year: 2016 We provided patients with patients oriented diagnosis and treatment advice from their lung assessments using an algorithm. It was feasible and in general well appreciated by our patients Source: International Congress 2016 – Screening, diagnosis, assessment, and treatment of COPD in primary care Year: 2016 What is important to people with asthma: Maximising research impact? Source: International Congress 2015 – Any news from the asthma field? Year: 2015 Expert Bangladeshi patients? A randomised trial of a lay-led self management programme for Bangladeshis with respiratory and cardiovascular disease Source: Eur Respir J 2003; 22: Suppl. 45, 409s Year: 2003 Selfmanagement by eHealth in asthma and COPD patients: with or without the professional. Source: International Congress 2017 – Primary care management of asthma and COPD Year: 2017 Adherence to online selfmanagement in patients with COPD or asthma: The role of disease burden Source: International Congress 2015 – New developments in medical education, web and internet Year: 2015 The use of email and a web-based database as a rare paediatric respiratory disease registry Source: Annual Congress 2007 - Clinical physiology: blood gases, muscle function and ventilation Year: 2007 Self-management education using interactive application software for tablet computer to improve health status in patients with COPD: A randomized controlled trial Source: International Congress 2016 – Latest insights into the management of chronic respiratory diseases Year: 2016