BackgroundWhether Web-based technologies can improve disease self-management is uncertain. My Asthma Portal (MAP) is a Web-based self-management support system that couples evidence-based behavioral change components (self-monitoring of symptoms, physical activity, and medication adherence) with real-time monitoring, feedback, and support from a nurse case manager.ObjectiveThe aim of this study was to compare the impact of access to a Web-based asthma self-management patient portal linked to a case-management system (MAP) over 6 months compared with usual care on asthma control and quality of life.MethodsA multicenter, parallel, 2-arm, pilot, randomized controlled trial was conducted with 100 adults with confirmed diagnosis of asthma from 2 specialty clinics. Asthma control was measured using an algorithm based on overuse of fast-acting bronchodilators and emergency department visits, and asthma-related quality of life was assessed using the Mini-Asthma Quality of Life Questionnaire (MAQLQ). Secondary mediating outcomes included asthma symptoms, depressive symptoms, self-efficacy, and beliefs about medication. Process evaluations were also included.ResultsA total of 49 individuals were randomized to MAP and 51 to usual care. Compared with usual care, participants in the intervention group reported significantly higher asthma quality of life (mean change 0.61, 95% CI 0.03 to 1.19), and the change in asthma quality of life for the intervention group between baseline and 3 months (mean change 0.66, 95% CI 0.35 to 0.98) was not seen in the control group. No significant differences in asthma quality of life were found between the intervention and control groups at 6 (mean change 0.46, 95% CI –0.12 to 1.05) and 9 months (mean change 0.39, 95% CI –0.2 to 0.98). For poor control status, there was no significant effect of group, time, or group by time. For all self-reported measures, the intervention group had a significantly higher proportion of individuals, demonstrating a minimal clinically meaningful improvement compared with the usual care group.ConclusionsThis study supported the use of MAP to enhance asthma quality of life but not asthma control as measured by an administrative database. Implementation of MAP beyond 6 months with tailored protocols for monitoring symptoms and health behaviors as individuals’ knowledge and self-management skills improve may result in long-term gains in asthma control.ClinicalTrialInternational Standard Randomized Controlled Trial Number (ISRCTN): 34326236; http://www.isrctn.com/ISRCTN34326236 (Archived by Webcite at http://www.webcitation.org/6mGxoI1R7).
BackgroundNumerous instruments are available to measure health-related quality of life (HRQoL) in patients with Chronic Obstructive Pulmonary Disease (COPD), covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning. Currently no information or guide is available yet to aid the selection of domains for a particular study or disease population. The aim of this paper is to identify which domains of HRQoL are most important with respect to COPD, from the patient perspective.MethodsTwenty-one Dutch patients with COPD were asked to describe important domains impacted by COPD freely; second, they were presented with cues (domains from the Patient-Reported Outcomes Measurement Information System (PROMIS) framework) and were asked to select the domains that were most relevant to them. During the interview, the patients were asked to indicate in which way the selected domains impact their lives. Both the answers to the open question, and the patient statements motivating nomination of PROMIS domains were coded into themes.ResultsThe most relevant (sub)domains of HRQoL for patients with COPD were: physical health (fatigue, physical functioning), social health (instrumental support, ability to participate in social roles and activities, companionship, and emotional support), and coping with COPD.ConclusionWe identified which domains of HRQoL are most important to patients with COPD. One of these (coping with COPD) is not explicitly covered by PROMIS, or by traditional questionnaires that are used to measure HRQoL in COPD.
Purpose The objective of this study is to present the implementation science approaches that were used before implementing electronic patient-reported outcome measures (ePROMs) across an integrated chronic pain network that includes primary, rehabilitation, and hospital-based care. Methods The Theoretical Domains Framework (TDF) was used to identify potential barriers and enablers to the use of ePROMS by primary care clinicians. In rehabilitation and tertiary care, the Consolidated Framework for Implementation (CFIR) was used to guide the identification of determinants of implementations, through observation of workflow, patient and clinician surveys, and clinician interviews. A mixed-method concurrent design comprising a quantitative and qualitative analysis was used. The results were reviewed by a steering committee to iteratively inform the ePROM implementation plan. The Proctor framework of evaluation was used to guide the development of an evaluation plan for the implementation of ePROMs in the integrated chronic pain network. Results Both frameworks provided similar results with respect to healthcare provider knowledge, behaviour, and experience interpreting PROM scores. The TDF and CFIR frameworks differed in identifying organizational-level determinants. The resultant implementation plan was structured around the adoption of PROMs to inform individual treatment planning and quality improvement. The evaluation plan focused on implementation and impact outcomes to evaluate the ePROM intervention. Conclusions The TDF and CFIR guided the development of a multi-component knowledge translation and training intervention that will address multiple gaps and barriers to implementation of PROMs across the integrated network. The ePROM intervention will aim to increase clinicians' knowledge and skills and foster best practices.
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