Background: Adequate self-management skills are of great importance for patients with chronic obstructive pulmonary disease (COPD) to reduce the impact of COPD exacerbations. Using mobile health (mHealth) to support exacerbation-related self-management could be promising in engaging patients in their own health and changing health behaviors. However, there is limited knowledge on how to design mHealth interventions that are effective, meet the needs of end users, and are perceived as useful. By following an iterative user-centered design (UCD) process, an evidence-driven and usable mHealth intervention was developed to enhance exacerbation-related self-management in patients with COPD. Objective: This study aimed to describe in detail the full UCD and development process of an evidence-driven and usable mHealth intervention to enhance exacerbation-related self-management in patients with COPD. Methods: The UCD process consisted of four iterative phases: (1) background analysis and design conceptualization, (2) alpha usability testing, (3) iterative software development, and (4) field usability testing. Patients with COPD, health care providers, COPD experts, designers, software developers, and a behavioral scientist were involved throughout the design and development process. The intervention was developed using the behavior change wheel (BCW), a theoretically based approach for designing behavior change interventions, and logic modeling was used to map out the potential working mechanism of the intervention. Furthermore, the principles of design thinking were used for the creative design of the intervention. Qualitative and quantitative research methods were used throughout the design and development process. Results: The background analysis and design conceptualization phase resulted in final guiding principles for the intervention, a logic model to underpin the working mechanism of the intervention, and design requirements. Usability requirements were obtained from the usability testing phases. The iterative software development resulted in an evidence-driven and usable mHealth intervention—Copilot, a mobile app consisting of a symptom-monitoring module, and a personalized COPD action plan. Conclusions: By following a UCD process, an mHealth intervention was developed that meets the needs and preferences of patients with COPD, is likely to be used by patients with COPD, and has a high potential to be effective in reducing exacerbation impact. This extensive report of the intervention development process contributes to more transparency in the development of complex interventions in health care and can be used by researchers and designers as guidance for the development of future mHealth interventions.
In 2019, The Global Initiative for Chronic Obstructive Lung Disease (GOLD) modified the grading system for patients with COPD, creating 16 subgroups (1A–4D). As part of the COPD Cohorts Collaborative International Assessment (3CIA) initiative, we aim to compare the mortality prediction of the 2015 and 2019 COPD GOLD staging systems. We studied 17 139 COPD patients from the 3CIA study, selecting those with complete data. Patients were classified by the 2015 and 2019 GOLD ABCD systems, and we compared the predictive ability for 5-year mortality of both classifications. In total, 17139 patients with COPD were enrolled in 22 cohorts from 11 countries between 2003 and 2017; 8823 of them had complete data and were analysed. Mean±SD age was 63.9±9.8 years and 62.9% were male. GOLD 2019 classified the patients in milder degrees of COPD. For both classifications, group D had higher mortality. 5-year mortality did not differ between groups B and C in GOLD 2015; in GOLD 2019, mortality was greater for group B than C. Patients classified as group A and B had better sensitivity and positive predictive value with the GOLD 2019 classification than GOLD 2015. GOLD 2015 had better sensitivity for group C and D than GOLD 2019. The area under the curve values for 5-year mortality were only 0.67 (95% CI 0.66–0.68) for GOLD 2015 and 0.65 (95% CI 0.63–0.66) for GOLD 2019. The new GOLD 2019 classification does not predict mortality better than the previous GOLD 2015 system.
Patients with chronic obstructive pulmonary disease (COPD) are often limited in their daily physical activity. However, the level, type and intensity of daily physical activity are not known, nor there is a clear insight in the contributing factors. The aim of this review is to describe daily physical activity of COPD patients, and to examine its relationship with demographic factors, pulmonary function, physical fitness, systemic inflammation and quality of life. A systematic literature search was conducted, including studies assessing daily physical activity in all stages of COPD by various different types of measurement techniques. In total, 47 studies were selected; 17 performance-, 20 questionnaire-, and 12 interview-based. Two studies used both a performance- and questionnaire-based method. Overall, COPD patients have a lower level and intensity of daily physical activity compared to healthy controls. This was reported by performance- as well as questionnaire-based studies, yet with a large variation (42-86% and 28-97%, respectively). Reduced daily physical activity is associated with higher levels of airway obstruction, higher levels of systemic inflammation, and lower levels of physical fitness. The association between daily physical activity and quality of life is less clear. In conclusion, this is the first review that examined the level, type and determinants of daily physical activity in COPD. It demonstrates that reduced daily physical activity frequently occurs in COPD patients, yet with a large variation. Methods of measuring and reporting daily physical activity should be more standardized.
MULTIFILE
Every year in the Netherlands around 10.000 people are diagnosed with non-small cell lung cancer, commonly at advanced stages. In 1 to 2% of patients, a chromosomal translocation of the ROS1 gene drives oncogenesis. Since a few years, ROS1+ cancer can be treated effectively by targeted therapy with the tyrosine kinase inhibitor (TKI) crizotinib, which binds to the ROS1 protein, impairs the kinase activity and thereby inhibits tumor growth. Despite the successful treatment with crizotinib, most patients eventually show disease progression due to development of resistance. The available TKI-drugs for ROS1+ lung cancer make it possible to sequentially change medication as the disease progresses, but this is largely a ‘trial and error’ approach. Patients and their doctors ask for better prediction which TKI will work best after resistance occurs. The ROS1 patient foundation ‘Stichting Merels Wereld’ raises awareness and brings researchers together to close the knowledge gap on ROS1-driven oncogenesis and increase the options for treatment. As ROS1+ lung cancer is rare, research into resistance mechanisms and the availability of cell line models are limited. Medical Life Sciences & Diagnostics can help to improve treatment by developing new models which mimic the situation in resistant tumor cells. In the current proposal we will develop novel TKI-resistant cell lines that allow screening for improved personalized treatment with TKIs. Knowledge of specific mutations occurring after resistance will help to predict more accurately what the next step in patient treatment could be. This project is part of a long-term collaboration between the ROS1 patient foundation ‘Stichting Merels Wereld’, the departments of Pulmonary Oncology and Pathology of the UMCG and the Institute for Life Science & Technology of the Hanzehogeschool. The company Vivomicx will join our consortium, adding expertise on drug screening in complex cell systems.
De chronische longziekte COPD (Chronic Obstructive Pulmonary Disease) kenmerkt zich door een toename van kortademigheid, hoesten en slijmvorming en is een veelvoorkomende ziekte in Nederland. Momenteel zijn er therapieën beschikbaar, waaronder het voorschrijven van een lage onderhoudsdosis Azitromycine, die ervoor zorgt dat het aantal longaanvallen drastisch daalt. De samenstelling van de microbiële populatie (het microbioom) in deze patiëntenpopulatie speelt een belangrijke rol in het ziekteverloop. Microvida analyseert COPD-patiëntmonsters voor het Amphia met behulp van klassieke kweektechnieken en wil nu haar dienstverlening graag uitbreiden. Nieuwe innovatieve ‘next-generation sequencing’ (NGS) maakt het mogelijk om het volledige microbioom van deze patiëntenpopulatie snel en gedetailleerd in kaart te brengen zonder kweek vooraf. Binnen dit project gaan we met een driehoek van MKB-, kennis- en praktijkpartners een high-throughput methode opzetten die het mogelijk maakt het microbioom in sputum snel en gebruiksvriendelijk te analyseren binnen deze patiëntenpopulatie. In het Amphia ziekenhuis loopt momenteel een klinische trial die het veilig afbouwen van het antibioticum Azitromycine onderzoekt en waarbij sputum samples verzameld worden. Met deze samples wordt in dit project een methode opgezet voor het isoleren van zuiver genetisch materiaal alvorens deze samples met behulp van NGS-technieken geanalyseerd worden. Als laatste stap zal een gebruikersinterface ontwikkeld worden die het mogelijk maakt om de verkregen data gebruiksvriendelijk te interpreteren en de resultaten te beoordelen. Alles met uiteindelijke doel meer kennis te vergaren over de samenstelling van het microbioom in relatie tot ziekte en gezondheid van de COPD-patiënt.
AANLEIDING Mensen met Chronic Obstructive Pulmonary Disease (COPD) hebben vaak langdurig fysiotherapie nodig. Symptomen zoals kortademigheid en vermoeidheid, veelal in combinatie met beperkte gezondheidsvaardigheden (46%), beïnvloeden hun leven sterk. Persoonsgerichte zorg is afgestemd op iemands persoonlijke behoeften, wensen en voorkeuren. Dit vereist dat fysiotherapeuten zinvol gebruik maken van meetresultaten. Zinvol betekent meetresultaten integreren in het zorgproces, deze communiceren op een begrijpelijke manier voor de patiënt, om samen te beslissen en zodoende tot persoonsgerichte zorg te komen. Echter, fysiotherapeuten vinden het lastig om meetresultaten zinvol te gebruiken in het zorgproces en de ervaren meerwaarde van gebruik van meetresultaten is beperkt. In de dagelijkse praktijk ontbreekt het fysiotherapeuten aan praktische handvatten om meetresultaten zinvoller te gebruiken ten behoeve van verdere personalisatie van fysiotherapeutische zorg. DOEL Het bevorderen van inzicht, kennis, vaardigheden en attitude van fysiotherapeuten in het zinvol gebruiken van meetresultaten voor patiënten met COPD. Dit willen we bereiken door: • Praktische handvatten voor zinvol gebruik van meetresultaten, wat leidt tot een transparanter, efficiënter en effectiever zorgproces. • Een verschuiving naar meer persoonsgerichte zorg, waarbij patiënten actief betrokken worden bij hun zorgproces en ongelijkheid in zorg wordt verminderd. CONSORTIUM Zuyd Hogeschool, Hogeschool Utrecht, Amsterdam UMC, LUMC, Nivel, Chronisch ZorgNet, KNGF, Longfonds, Mens Achter de Patiënt, 7 eerstelijns fysiotherapiepraktijken. ONDERZOEKSPLAN De doelstellingen worden gerealiseerd met een mixed methods design met vier, onderling samenhangende, werkpakketten (WP) met elk een specifieke focus. WP1: Verdiepend inzicht (maand 1-12) WP2: Handvatten selecteren en (door)ontwikkelen met de praktijk (maand 1-13) WP3: Handvatten testen met de praktijk (maand 13-20) WP4: Disseminatie (maand 13-24) RELEVANTIE Dit project is relevant omdat eerstelijns fysiotherapeuten beter toegerust worden om meetresultaten zinvol te kunnen gebruiken voor persoonsgerichte zorg bij patiënten met COPD. In het verlengde daarvan dragen ze bij aan het verminderen van ongelijkheid in zorg, betere gezondheidsuitkomsten en meer patiënttevredenheid.
