Evidence-based decision support in HIV/TB care: designing treatment, monitoring, and assessment support for care providers

Introduction: HIV and tuberculosis (TB) coinfection, which is a major challenge for healthcare systems worldwide, requires effective strategies to support care providers in applying best clinical evidence in making treatment decisions about the care of individ- ual patients. Clinical decision support (CDS) systems have the potential to facilitate the implementation of evidence-based guidelines in clinical practice. Aim: The aim of this thesis was to explore how a CDS system could be designed to sup- port the adoption of evidence-based guidelines in the treatment of HIV-related TB. Study design: The HIV outpatient clinic at the Karolinska University Hospital, Huddinge, Stockholm, was the setting for a user-centered design approach structured in three phases: contextual analysis (Studies I and II), design (Study III), and evaluation (Study IV). Study I explores care providers’ challenges and requirements; Study II, which describes socio- demographic and clinical characteristics of patients in this setting, analyzes the factors associated with anti-TB treatment success as well as adverse drug reactions; Study III proposes a CDS framework of drug therapy recommendations that is applied to HIV- related TB treatment guidelines; Study IV formatively evaluates the conceptual design of a CDS prototype that is based on the framework developed in Study III. Methods: In Study I, the contextual analysis is based on observations and interviews. Study II analyses patient treatment outcomes in the research setting between the years 1987 to 2010 (inclusive). Study III presents the design that is based on prototyping and guideline modeling. Study IV uses focus groups of physicians and nurses in the evalua- tion of the design. Results: The contextual analysis revealed challenges related to the complexity of HIV- related TB treatment (Studies I and II). Because the care providers thought they lacked sufficient experience with HIVTB drug therapy, they sought improved support tools and structures (Study I). Combined HIV and TB treatment was related to treatment success, but was also associated with adverse drug reactions (Study II). The design phase ap- plied the eviTMA (evidence-based Treatment, Monitoring, and Assessment) framework to model HIV-related TB treatment guidelines. This resulted in a CDS prototype that models alternative drug therapy options, their expected effects, and recommended mon- itoring routines (Study III). The care providers identified several potential benefits of the eviTMA CDS prototype including support for decision making, collaboration, and qual- ity improvement work (Study IV). Identified concerns that need to be addressed in future include the risk of overdependence on CDS, increased workload, and aspects related to the implementation and maintenance of a CDS system (Study IV). Conclusions: The main contribution of this thesis is the eviTMA CDS framework de- signed to support care providers in the adoption of evidence-based drug therapy rec- ommendations. The framework was evaluated in a CDS prototype for HIV-related TB treatment. Application to other conditions was desired by care providers and should be explored in future

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth : Co-Design Study

Background: Worldwide, the number of people with Parkinson's disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. Objective: This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. Methods: Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results: The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). Conclusions: This study adds to our knowledge on how PD co-care could be operationalized Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care

Unveiling the Mechanisms of Change: An Explanatory Case Study of Improving Hip Fracture Rehabilitation in Sweden

Background: Hip fracture has a high risk of mortality and puts a large financial burden on the health care system.&nbsp;Context and Purpose: A successful hip fracture rehabilitation project at a Swedish university hospital resulted in reduced length of hospital stay, earlier returns to pre-accident housing, and decreased costs. The purpose was to identify promoters and obstacles of change in the improvement project.&nbsp;Methods: This is an explanatory case study of a hip fracture improvement project. Pettigrew and Whipp’s framework was used for describing the four strategic dimensions of change in the case: context, content, process, and outcomes. Mixed methods data was used to identify promoters and obstacles.Findings: Promoters: a dedicated project leader, empowerment educated rehabilitation staff, the combination of planned and emergent change; co-location of orthopaedic surgery and geriatric rehabilitation ward. Obstacles: organizational complexity, resistance to change.&nbsp;Conclusions: A dedicated project leader supported by top management and the use of empowerment in the rehabilitation in combination with planned and emergent change can lead to improvement, despite organizational complexity and resistance to change.Potential implications: This study provides a better understanding of promoters and obstacles of change that influenced the success of a hip fracture improvement project in a large health care organization. This knowledge may support decision makers when planning large-scale improvement projects in complex organizations.</p

Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care

publishedVersio

Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care

publishedVersio

Enhanced patient activation in cancer care transitions : protocol for a randomized controlled trial of a tailored eectronic health intervention for men with prostate cancer

Background: Prostate cancer has increased in incidence worldwide and is the leading cause of cancer death in 24 countries. The most common treatment is radical prostatectomy. However, surgery is associated with postoperative complications such as urinary incontinence and sexual dysfunction, causing decreased quality of life. If survivors are encouraged to be more active in self-care management, the symptom burden may decrease and quality of life may improve. An electronic health (eHealth) intervention based on motivational behavioral theory has been developed for this purpose. Objective: This study aimed to compare the effectiveness of standard care in combination with a tailored eHealth and mobile health self-management support system, electronic Patient Activation in Treatment at Home (ePATH), with standard care of adverse effects of prostate cancer treatment (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim was to test the effect on patient activation, motivation, overall well-being, and health literacy over time in and between groups. Methods: A pragmatic multicenter, block-randomized controlled trial with 2 study arms, standard care (control) and eHealth-assisted standard care (intervention), for patients undergoing radical prostatectomy. For 80% power, a sample of 242 men will need to be recruited. Results: Recruitment started in January 2018 and is expected to be completed by August 2019. Data collection will be completed in August 2020. The first cross-sectional results from this trial are anticipated to be published in January 2020. Conclusions: With the increasing number of prostate cancer survivors, attention should be paid to rehabilitation, psychosocial care, and support for endurance of self-care to reduce suffering from adverse treatment effects, poor quality of life, and depression because of postoperative complications. This project may increase knowledge of how patients can be supported to feel involved in their care and returning to as normal a life as possible. The anticipated effects of ePATH could improve health outcomes for individuals and facilitate follow-up for health care professionals

Patients’ and clinicians’ views on the appropriate use of safety-netting advice in consultations—an interview study from Sweden

Background A promising approach to manage clinical uncertainty and thereby reduce the risk of preventable diagnostic harm is to use safety-netting advice (ie, communicating structured information to patients about when and where to reconsult healthcare).Aim To explore clinicians’ and patients’ views on when and how safety-netting can be successfully applied in primary-care and emergency-care settings.Design and setting An exploratory qualitative research design; we performed focus groups and interviews in a Swedish setting.Participants Nine physicians working in primary or emergency care and eight patients or caregivers participated. The participants were an ethnically homogeneous group, originating from Western European or Australian backgrounds.Method Data were analysed inductively, using the framework method. The results are reported according to the Standards for Reporting Qualitative Research guidelines for reporting qualitative research.Results In order to manage diagnostic uncertainty using safety-netting, clinicians and patients emphasised the need to understand the preconditions for the consultation (ie, the healthcare setting, the patient’s capacity and existing power imbalance). Furthermore, participants raised the importance of establishing a mutual understanding regarding the patient’s perspective and the severity of the situation before engaging in safety-netting advice.Conclusion The establishment of a shared mental model between clinician and patient of the preconditions for the clinical encounter is a vital factor affecting how safety-netting advice is communicated and received and its ability to support patients in problem detection and planning after the visit. We suggest that successful safety-netting can be viewed as a team activity, where the clinician and patient collaborate in monitoring how the patient’s condition progresses after the care visit. Furthermore, our findings suggest that to be successfully implemented, safety-netting advice needs to be tailored to the clinical context in general and to the patient–clinician encounter in particular

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

Design and Development of an eHealth Service for Collaborative Self-Management among Older Adults with Chronic Diseases: A Theory-Driven User-Centered Approach

The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients&rsquo; engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application&mdash;ePATH (electronic Patient Activation in Treatment at Home)&mdash;with separate user interfaces for patients and healthcare professionals was developed. The feasibility study with two nurses and five patients led to a redesign and highlighted the importance of adequately addressing not only varying user needs but also the complex nature of healthcare organizations when implementing new services and processes in chronic care management

What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management

Chronic care management is dependent on productive interactions between patients and healthcare professionals. Digital health technologies (eHealth) open up new possibilities for improving the quality of care, but there is a limited understanding of what productive interactions entail. This study explores characteristics of productive interactions to support self-care and healthcare in the context of eHealth use in diabetes care. We collected qualitative data based on interviews with nurses and responses to open-ended survey questions from patients, prior to and post using an eHealth service for self-monitoring and digital communication. We found that eHealth’s influence on productive interactions was characterized by unconstrained access, health parameter surveillance, and data-driven feedback, with implications for self-care and healthcare. Our findings indicate that eHealth perforates the boundaries that define interactions under traditional, non-digital care. This was manifested in expressions of uncertainty and in blurred boundaries between self-care and healthcare. We conclude that the attainment of a sustainable eHealth ecosystem will require healthcare to acknowledge eHealth as a disruptive change that may require re-organization to optimally support the productive use of eHealth services for both patients and staff, which includes agreement on new routines, as well as social interaction rules