Upgrading chronic care : exploring challenges in rheumatology care management.

Introduction: The literature on chronic care describes a gap between what patients need and what healthcare provides. In rheumatoid arthritis, major medical advances have taken place in recent years which have made it possible to successfully treat more patients. However, these advances have led to organizational challenges in the man-agement of healthcare delivery. Aim: To explore the challenges in rheumatology care management by studying users’ perceptions of the Feed Forward System (FFS) principles (Study I), simulation model-ing as a tool for chronic care improvement (Study II and Study IV), and a way to test new chronic care processes (Study III). Method: Qualitative and quantitative research methods were used to explore the chal-lenges faced by providers and their patients at Swedish rheumatology clinics. Methods include interviews, a focus group discussion, questionnaires, a meta-analysis, and simu-lation modeling. Content analysis was used to analyze qualitative data. Findings: Patients became more involved in and informed about their own care when they used the FFS. Providers said that it offered an overview of past treatments and their effects, as well as support for treatment decisions (Study I). Simulation modeling provided a way to test the effects of moving from time-centric to need-centric processes in rheumatology care (Study III). Simulation modeling was also shown to support healthcare improvement by visualizing the effects of planned changes, communicating these changes to management, and engaging providers to explore and test innovative solutions (Study II and IV). Discussion: Feed Forward Systems and simulation modeling represent an upgrade of how to manage the challenges inherent to rheumatology care. FFS encourage patient empowerment, self-management, and shared decision making, as well as support learn-ing for patients and providers alike. Simulation modeling helps manage complex prob-lems and facilitates learning for providers and managers. This is enabled through the shared features of FFS and simulation modeling: (1) the transformation of data into knowledge, (2) a mutual communication platform for multiple stakeholder involve-ment, (3) provision of real time feedback that enables action in clinical practice, and (4) self-correction that generates learning opportunities. Conclusion: The introduction of FFS and simulation modeling has implications at the clinical level and the patient level of rheumatology care. Upgrading chronic care where it is delivered, at both levels, can contribute to improvements in care management – changing the healthcare system from within

Team behaviors in emergency care: a qualitative study using behavior analysis of what makes team work

<p>Abstract</p> <p>Objective</p> <p>Teamwork has been suggested as a promising approach to improving care processes in emergency departments (ED). However, for teamwork to yield expected results, implementation must involve behavior changes. The aim of this study is to use behavior analysis to qualitatively examine how teamwork plays out in practice and to understand eventual discrepancies between planned and actual behaviors.</p> <p>Methods</p> <p>The study was set in a Swedish university hospital ED during the initial phase of implementation of teamwork. The intervention focused on changing the environment and redesigning the work process to enable teamwork. Each team was responsible for entire care episodes, i.e. from patient arrival to discharge from the ED. Data was collected through 3 days of observations structured around an observation scheme. Behavior analysis was used to pinpoint key teamwork behaviors for consistent implementation of teamwork and to analyze the contingencies that decreased or increased the likelihood of these behaviors.</p> <p>Results</p> <p>We found a great discrepancy between the planned and the observed teamwork processes. 60% of the 44 team patients observed were handled solely by the appointed team members. Only 36% of the observed patient care processes started according to the description in the planned teamwork process, that is, with taking patient history together. Beside this behavior, meeting in a defined team room and communicating with team members were shown to be essential for the consistent implementation of teamwork. Factors that decreased the likelihood of these key behaviors included waiting for other team members or having trouble locating each other. Getting work done without delay and having an overview of the patient care process increased team behaviors. Moreover, explicit instructions on when team members should interact and communicate increased adherence to the planned process.</p> <p>Conclusions</p> <p>This study illustrates how behavior analysis can be used to understand discrepancies between planned and observed behaviors. By examining the contextual conditions that may influence behaviors, improvements in implementation strategies can be suggested. Thereby, the adherence to a planned intervention can be improved, and/or revisions of the intervention be suggested.</p

"You have to know why you're doing this" : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking. Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.FORTE, the Swedish Research Council for Health, Working Life and Welfare, grant number 2014-4238Vinnova, the Swedish Governmental Agency for Innovation SystemsPublishe

Persons with rheumatoid arthritis challenge the relevance of the health assessment questionnaire: a qualitative study of patient perception

Abstract Background The Stanford Health Assessment Questionnaire-Disability Index (HAQ) is widely used to measure functional ability in persons with Rheumatoid Arthritis (RA). The instrument was developed with limited involvement from persons with RA, and their perception of the instrument has not been studied in depth. The aim of this study was to explore how persons with RA experience the use of the HAQ in care. Methods The study used secondary data analysis. Persons with RA participated in semi-structured interviews in previous research projects. Thirty-nine interviews were included based on data fit, and thematic analysis applied. Results The participants questioned the relevance of the HAQ but nevertheless experienced that the instrument had a profound effect on their understanding of health and how care is delivered. The analysis resulted in three themes: Problems with individual items, meaning of the summative score, and effects on care and health perceptions. Conclusions To make the HAQ relevant to persons with RA, it needs to be revised or to include an option to select items most meaningful to the respondent. To ensure relevance, the HAQ update should preferably be co-created by researchers, clinicians and persons with RA

“You have to know why you're doing this” : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking. Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.Spetspatiente

Impact of the Covid-19 pandemic on use of Video consultations in a Swedish Primary care setting

The objective is to describe how the uptake of online video consultations was affected by the Covid-19 pandemic, using data from a Swedish primary care setting. There seem to be a relationship between the use of video consultations and spread of Covid-19, especially in 2020 when the use varied more with the contagion waves. In 2021 the use was more consistent over time. In summary, the Covid-19 pandemic had a direct impact on the adoption of video consultations in our primary care setting, yet after the initial high use, it appears to have stabilized on a lower level

Digital tools as promoters for person-centered care practices in chronic care? : Healthcare professionals' experiences from rheumatology care

BACKGROUND: Person-centered care (PCC) emphasize the importance of supporting individuals' involvement in care provided and self-care. PCC has become more important in chronic care as the number of people living with chronic conditions is increasing due to the demographic changes. Digital tools have potential to support interaction between patients and healthcare providers, but empirical examples of how to achieve PCC in chronic care and the role of digital tools in this process is limited. The aim of this study was to investigate strategies to achieve PCC used by the healthcare professionals at an outpatient Rheumatology clinic (RC), the strategies' relation to digital tools, and the perceived impact of the strategies on healthcare professionals and patients. METHODS: A single case study design was used. The qualitative data consisted of 14 semi-structured interviews and staff meeting minutes, covering the time period 2017-2019. The data were analyzed using conventional content analysis, complemented with document analyses. RESULTS: Ten strategies on two levels to operationalize PCC, and three categories of perceived impact were identified. On the individual patient level strategies involved several digital tools focusing on flexible access to care, mutual information sharing and the distribution of initiatives, tasks, and responsibilities from provider to patients. On the unit level, strategies concerned involving patient representatives and individual patients in development of digital services and work practices. The roles of both professionals and patients were affected and the importance of behavioral and cultural change became clear. CONCLUSIONS: By providing an empirical example from chronic care the study contributes to the knowledge on strategies for achieving PCC, how digital tools and work practices interact, and how they can affect healthcare staff, patients and the unit. A conclusion is that the use of the digital tools, spanning over different dimensions of engagement, facilitated the healthcare professionals' interaction with patients and the patients' involvement in their own care. Digital tools complemented, rather than replaced, care practices

Staffs' and managers' perceptions of how and when discrete event simulation modelling can be used as a decision support in quality improvement : A focus group discussion study at two hospital settings in Sweden

Objective: To explore healthcare staffs' and managers' perceptions of how and when discrete event simulation modelling can be used as a decision support in improvement efforts. Design: Two focus group discussions were performed. Settings: Two settings were included: a rheumatology department and an orthopaedic section both situated in Sweden. Participants: Healthcare staff and managers (n=13) from the two settings. Interventions: Two workshops were performed, one at each setting. Workshops were initiated by a short introduction to simulation modelling. Results from the respective simulation model were then presented and discussed in the following focus group discussion. Results: Categories from the content analysis are presented according to the following research questions: how and when simulation modelling can assist healthcare improvement? Regarding how, the participants mentioned that simulation modelling could act as a tool for support and a way to visualise problems, potential solutions and their effects. Regarding when, simulation modelling could be used both locally and by management, as well as a pedagogical tool to develop and test innovative ideas and to involve everyone in improvement work. Conclusions: Its potential as an information and communication tool and as an instrument for pedagogic work with healthcare improvement render a broader application and value of simulation modelling than previously reported

Data from: Staffs’ and managers’ perceptions of how and when discrete event simulation modeling can be used as a decision support in quality improvement: a focus group discussion study at two hospital settings in Sweden

Objective To explore healthcare staffs’ and managers’ perceptions of how and when discrete event simulation modeling can be used as a decision support in improvement efforts. Design Two focus group discussions were performed. Setting Two settings were included: a rheumatology department and an orthopedic section both situated in Sweden. Participants Healthcare staff and managers (n=13) from the two settings. Interventions Two workshops were performed, one at each setting. Workshops were initiated by a short introduction to simulation modeling. Results from the respective simulation model were then presented and discussed in the following focus group discussion. Results Categories from the content analysis are presented according to the following research questions: how and when simulation modeling can assist healthcare improvement? Regarding how, the participants mentioned that simulation modeling could act as a tool for support and a way to visualize problems, potential solutions and their effects. Regarding when, simulation modeling could be used both locally and by management, as well as a pedagogical tool to develop and test innovative ideas and to involve everyone in the improvement work. Conclusions Its potential as an information and communication tool and as an instrument for pedagogic work within healthcare improvement render a broader application and value of simulation modeling than previously reported