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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.
Carolina Wannheden; Ulrica Von Thiele Schwarz; Claes-Göran Östenson; Karin Pukk Härenstam; Terese Stenfors. What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management. Sustainability 2021, 13, 5221 .
AMA StyleCarolina Wannheden, Ulrica Von Thiele Schwarz, Claes-Göran Östenson, Karin Pukk Härenstam, Terese Stenfors. What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management. Sustainability. 2021; 13 (9):5221.
Chicago/Turabian StyleCarolina Wannheden; Ulrica Von Thiele Schwarz; Claes-Göran Östenson; Karin Pukk Härenstam; Terese Stenfors. 2021. "What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management." Sustainability 13, no. 9: 5221.
Introduction: Digital health technologies such as self-monitoring devices and apps are becoming increasingly important as tools to promote healthy habits and support individuals in their self-care. There is still a scarcity of research that builds on motivational theory to better understand the functioning of digital health technologies. The self-determination theory (SDT) is a macro theory of motivation that delineates three basic psychological needs that are linked to different types of motivation and lead to well-being when satisfied and illbeing when frustrated.Objective: To explore how the use of a digital tool for self-monitoring and communication with healthcare satisfies or frustrates basic psychological needs across four spheres of user experience: interface, task, behavior, and life.Methods: The study was conducted in a Swedish primary care setting with individuals who participated in a pilot study of a digital health intervention for self-monitoring in chronic care management. Data from a follow-up survey with participants 7 months after recruitment were analyzed using a thematic approach mixing inductive and deductive analysis. The unit of analysis is based on a total of 642 individual answers to seven open-ended questions, from 121 respondents.Results: The analysis identified positive and negative influences of self-monitoring and digital communication with healthcare on all three psychological needs. Three main findings are that: (1) data covered all four spheres of user experiences, but most user experiences concerned the behavior and task spheres; (2) satisfaction and frustration of competence needs was more prominent than influences on other needs; (3) the same experience may be perceived as both need frustrating and need satisfying, which suggests a tension that reflects individual differences.Conclusion: Designers of digital health technologies need to take into account basic psychological needs within all spheres of user experience, from interface to life in general. Because some features may be simultaneously experienced as satisfying and frustrating by different users, these types of tools need to be flexible to accommodate for variation of user experiences. Careful design considerations that take motivational theory into account would contribute to the transformation of care for individuals with chronic conditions.
Carolina Wannheden; Terese Stenfors; Andreas Stenling; Ulrica Von Thiele Schwarz. Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care. Frontiers in Public Health 2021, 8, 1 .
AMA StyleCarolina Wannheden, Terese Stenfors, Andreas Stenling, Ulrica Von Thiele Schwarz. Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care. Frontiers in Public Health. 2021; 8 ():1.
Chicago/Turabian StyleCarolina Wannheden; Terese Stenfors; Andreas Stenling; Ulrica Von Thiele Schwarz. 2021. "Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care." Frontiers in Public Health 8, no. : 1.
Background Technological advances have radically changed the opportunities for individuals with chronic conditions to practice self-care and to coproduce health care and research. Digital technologies enable patients to perform tasks traditionally carried out by health care professionals in a more convenient way, at lower costs, and without compromising quality. Patients may also share real-world data with other stakeholders to promote individual and population health. However, there is a need for legal frameworks that enable patient privacy and control in such sharing of real-world data. We believe that this need could be met by the conceptualization of patient-controlled real-world data as knowledge commons, which is a resource shared by a group of people. Objective This study aimed to propose a conceptual model that describes how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while respecting personal data privacy and control. Methods An action research approach was used to develop a solution to enable patients, in a self-determined way, to share patient-controlled data to other settings. We chose the context of cystic fibrosis (CF) care in Sweden, where coproduction between patients, their families, and health care professionals is critical in the introduction of new drugs. The first author, who is a lawyer and parent of children with CF, was a driver in the change process. All coauthors collaborated in the analysis. We collected primary and secondary data reflecting changes during the time period from 2012 to 2020, and performed a qualitative content analysis guided by the knowledge commons framework. Results Through a series of changes, a national system for enabling patients to share patient-controlled real-world data to different stakeholders in CF care was implemented. The case analysis resulted in a conceptual model consisting of the following three knowledge commons arenas that contributed to patient-controlled real-world data collection, use, and sharing: (1) patient world arena involving the private sphere of patients and families; (2) clinical microsystem arena involving the professional sphere at frontline health care clinics; and (3) round table arena involving multiple stakeholders from different settings. Based on the specification of property rights, as presented in our model, the patient can keep control over personal health information and may grant use rights to other stakeholders. Conclusions Health information exchanges for sharing patient-controlled real-world data are pivotal to enable patients, health care professionals, health care funders, researchers, authorities, and the industry to coproduce high-quality care and to introduce and follow-up novel health technologies. Our model proposes how technical and legal structures that protect the integrity and self-determination of patients can be implemented, which may be applicable in other chronic care settings as well.
Andreas Hager; Staffan Lindblad; Mats Brommels; Stina Salomonsson; Carolina Wannheden. Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study. Journal of Medical Internet Research 2021, 23, e16842 .
AMA StyleAndreas Hager, Staffan Lindblad, Mats Brommels, Stina Salomonsson, Carolina Wannheden. Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study. Journal of Medical Internet Research. 2021; 23 (1):e16842.
Chicago/Turabian StyleAndreas Hager; Staffan Lindblad; Mats Brommels; Stina Salomonsson; Carolina Wannheden. 2021. "Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study." Journal of Medical Internet Research 23, no. 1: e16842.
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Worldwide, the number of people with Parkinson’s disease (PwP) is predicted to double between the years 2005 and 2030. Given this predicted increase and the limited availability of healthcare resources, eHealth/mHealth services have the potential to provide considerable support for PwP's self-management and collaboration with healthcare professionals (HCPs). Chronic care management requires a different practice of healthcare compared to the management of acute conditions, emphasizing both patients’ and HCP's knowledge and active collaboration for best possible health outcomes, which has been described as 'co-care'. Objective: The aim of this study was to explore how co-care could be operationalized in PD care, supported by eHealth/mHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth/mHealth functionalities to achieve co-care. Methods: Principles of participatory design were used to enable the identification of PwP's and HCP's views on co-care. The collaborative work was performed in a series of four half-day co-design workshops. Seven (4 women) PwP and 9 HCPs (4 women) participated; 4 neurologists, 3 nurses and 2 physiotherapists. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshop. The focus groups were transcribed verbatim. The data were analyzed using qualitative thematic analysis. Results: The qualitative analysis of data resulted in two main themes. The first theme, Core eHealth functionalities and their expected values, describes six desired eHealth functionalities for supporting Parkinson's disease co-care between PwP and HCP: 1) self-tracking, 2) pre-visit questionnaires, 3) graphical visualization, 4) clinical decision support, 5) self-care recommendations, 6) asynchronous communication). The second theme, Individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth/mHealth service for co-care. Individual constraints: eHealth literacy and acceptance; organizational constraints: teamwork and administrative workload. Conclusions: This study adds to our knowledge on how co-care in Parkinson's Disease care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by patients' needs and enabled by active information exchange between PwP and HCPs and further supported by 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 healthcare.
Carolina Wannheden; Åsa Revenäs. How People with Parkinson's Disease and Healthcare Professionals Wish to Partner in Care Using eHealth: A Co-design Study (Preprint). Journal of Medical Internet Research 2020, 22, 1 .
AMA StyleCarolina Wannheden, Åsa Revenäs. How People with Parkinson's Disease and Healthcare Professionals Wish to Partner in Care Using eHealth: A Co-design Study (Preprint). Journal of Medical Internet Research. 2020; 22 (9):1.
Chicago/Turabian StyleCarolina Wannheden; Åsa Revenäs. 2020. "How People with Parkinson's Disease and Healthcare Professionals Wish to Partner in Care Using eHealth: A Co-design Study (Preprint)." Journal of Medical Internet Research 22, no. 9: 1.
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. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11278
Carolina Wannheden; Åsa Revenäs. How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint). 2020, 1 .
AMA StyleCarolina Wannheden, Åsa Revenäs. How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint). . 2020; ():1.
Chicago/Turabian StyleCarolina Wannheden; Åsa Revenäs. 2020. "How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint)." , no. : 1.
BACKGROUND Technological advances have radically changed the opportunities for individuals with chronic conditions to practice self-care and to coproduce health care and research. Digital technologies enable patients to perform tasks traditionally carried out by health care professionals in a more convenient way, at lower costs, and without compromising quality. Patients may also share real-world data with other stakeholders to promote individual and population health. However, there is a need for legal frameworks that enable patient privacy and control in such sharing of real-world data. We believe that this need could be met by the conceptualization of patient-controlled real-world data as knowledge commons, which is a resource shared by a group of people. OBJECTIVE This study aimed to propose a conceptual model that describes how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while respecting personal data privacy and control. METHODS An action research approach was used to develop a solution to enable patients, in a self-determined way, to share patient-controlled data to other settings. We chose the context of cystic fibrosis (CF) care in Sweden, where coproduction between patients, their families, and health care professionals is critical in the introduction of new drugs. The first author, who is a lawyer and parent of children with CF, was a driver in the change process. All coauthors collaborated in the analysis. We collected primary and secondary data reflecting changes during the time period from 2012 to 2020, and performed a qualitative content analysis guided by the knowledge commons framework. RESULTS Through a series of changes, a national system for enabling patients to share patient-controlled real-world data to different stakeholders in CF care was implemented. The case analysis resulted in a conceptual model consisting of the following three knowledge commons arenas that contributed to patient-controlled real-world data collection, use, and sharing: (1) patient world arena involving the private sphere of patients and families; (2) clinical microsystem arena involving the professional sphere at frontline health care clinics; and (3) round table arena involving multiple stakeholders from different settings. Based on the specification of property rights, as presented in our model, the patient can keep control over personal health information and may grant use rights to other stakeholders. CONCLUSIONS Health information exchanges for sharing patient-controlled real-world data are pivotal to enable patients, health care professionals, health care funders, researchers, authorities, and the industry to coproduce high-quality care and to introduce and follow-up novel health technologies. Our model proposes how technical and legal structures that protect the integrity and self-determination of patients can be implemented, which may be applicable in other chronic care settings as well.
Andreas Hager; Staffan Lindblad; Mats Brommels; Stina Salomonsson; Carolina Wannheden. Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study (Preprint). 2019, 1 .
AMA StyleAndreas Hager, Staffan Lindblad, Mats Brommels, Stina Salomonsson, Carolina Wannheden. Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study (Preprint). . 2019; ():1.
Chicago/Turabian StyleAndreas Hager; Staffan Lindblad; Mats Brommels; Stina Salomonsson; Carolina Wannheden. 2019. "Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study (Preprint)." , no. : 1.
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. 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 activaftion, motivation, overall well-being, and health literacy over time in and between groups. 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. 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. 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. International Standard Randomised Controlled Trial Number: 18055968; http://www.isrctn.com/ISRCTN18055968 (Archived by WebCite at http://www.isrctn.com/ISRCTN18055968). DERR1-10.2196/11625.
Mirjam Ekstedt; Kristina Schildmeijer; Camilla Wennerberg; Lina Nilsson; Carolina Wannheden; Amanda Hellström. Enhanced Patient Activation in Cancer Care Transitions: Protocol for a Randomized Controlled Trial of a Tailored Electronic Health Intervention for Men With Prostate Cancer. JMIR Research Protocols 2019, 8, e11625 .
AMA StyleMirjam Ekstedt, Kristina Schildmeijer, Camilla Wennerberg, Lina Nilsson, Carolina Wannheden, Amanda Hellström. Enhanced Patient Activation in Cancer Care Transitions: Protocol for a Randomized Controlled Trial of a Tailored Electronic Health Intervention for Men With Prostate Cancer. JMIR Research Protocols. 2019; 8 (3):e11625.
Chicago/Turabian StyleMirjam Ekstedt; Kristina Schildmeijer; Camilla Wennerberg; Lina Nilsson; Carolina Wannheden; Amanda Hellström. 2019. "Enhanced Patient Activation in Cancer Care Transitions: Protocol for a Randomized Controlled Trial of a Tailored Electronic Health Intervention for Men With Prostate Cancer." JMIR Research Protocols 8, no. 3: e11625.
The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce. The aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group...
Åsa Revenäs; Helena Hvitfeldt Forsberg; Emma Granström; Carolina Wannheden; Jonas Geuens; Birgitte Nørgaard; Thomas Schmidt; Helle Johannessen. Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges. JMIR Research Protocols 2018, 7, e11278 .
AMA StyleÅsa Revenäs, Helena Hvitfeldt Forsberg, Emma Granström, Carolina Wannheden, Jonas Geuens, Birgitte Nørgaard, Thomas Schmidt, Helle Johannessen. Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges. JMIR Research Protocols. 2018; 7 (10):e11278.
Chicago/Turabian StyleÅsa Revenäs; Helena Hvitfeldt Forsberg; Emma Granström; Carolina Wannheden; Jonas Geuens; Birgitte Nørgaard; Thomas Schmidt; Helle Johannessen. 2018. "Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges." JMIR Research Protocols 7, no. 10: e11278.
Background: The aim of this observational cohort study was to determine the incidence and risk factors of active tuberculosis (TB) in persons living with HIV in a low endemic setting over a 17-year time period when combination antiretroviral therapy (ART) has been available. We thereby aimed to understand the usefulness of TB chemoprophylaxis among HIV patients with latent TB. Methods: All 2127 adult patients diagnosed with HIV January 1996–December 2013 at the Karolinska University Hospital in Stockholm County were eligible. After exclusion of 259 patients transferred to other clinics, 1868 were followed until TB diagnosis, death or end of study period (December 2013). The median follow-up time was 7.9 years (interquartile range, 3.9–11.5). Results: Active TB was diagnosed in 92 patients, corresponding to an incidence rate of 6.2 cases (95% CI 5.1–7.6) per 1000 person-years with a significant decline over time. The majority (52%) of TB cases were diagnosed within 1 month from HIV diagnosis. Being a migrant from a TB-endemic region, was the only patient characteristic associated with significantly higher risk of active TB (Hazard Ration, HR: 8.54, 95% confidence interval, CI: 3.09–23.61 in a multivariate regression analysis controlling for route of HIV transmission, year of HIV diagnosis and CD4-cell count and viral load at HIV diagnosis. The number needed to treat to prevent one case of TB among patients in this high-risk group was 22 (95% CI 26–47). Conclusion: The incidence of active TB in persons living with HIV in Stockholm County declined significantly after the introduction of ART but was still 80 times higher than in the general population at the end of the study period. The therapeutic gain of chemoprophylaxis in low endemic settings should be weighed against costs and side effects.
Maria Norrby; Carolina Wannheden; Anna Mia Ekström; Ingela Berggren; Lars Lindquist. Incidence of tuberculosis and the need of prophylactic treatment in persons living with HIV in Stockholm during the era of anti-retroviral therapy 1996–2013. Infectious Diseases 2018, 50, 807 -816.
AMA StyleMaria Norrby, Carolina Wannheden, Anna Mia Ekström, Ingela Berggren, Lars Lindquist. Incidence of tuberculosis and the need of prophylactic treatment in persons living with HIV in Stockholm during the era of anti-retroviral therapy 1996–2013. Infectious Diseases. 2018; 50 (11-12):807-816.
Chicago/Turabian StyleMaria Norrby; Carolina Wannheden; Anna Mia Ekström; Ingela Berggren; Lars Lindquist. 2018. "Incidence of tuberculosis and the need of prophylactic treatment in persons living with HIV in Stockholm during the era of anti-retroviral therapy 1996–2013." Infectious Diseases 50, no. 11-12: 807-816.
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 improve. An eHealth intervention based on motivational behavioral theory has been developed for this purpose. OBJECTIVE to compare the effectiveness of a tailored eHealth-assisted self-management support, ePATH, with standard care of postoperative symptoms (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim is to test the effect on patient activation, motivation, overall well-being, and health literacy over time, in and between groups. METHODS A pragmatic multi-center block-randomized controlled trial (RCT) with two 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 N.A. CONCLUSIONS Many prostate cancer survivors suffer from poor quality of life and depression due to postoperative complications. Erectile dysfunction and urinary leakage are common and may be difficult to discuss openly. With the expected increase of men living with cancer, attention should be paid to rehabilitation, psychosocial care, and creation of tools to help patients return to as normal a life as possible. This project can increase knowledge of how patients can be supported to perform self-care and to feel involved in their care. The anticipated effects of ePATH could improve health outcomes for individuals and facilitate follow-up for healthcare professionals. CLINICALTRIAL ISRCTN 18055968
Mirjam Ekstedt; Kristina Schildmeijer; Camilla Wennerberg; Lina Nilsson; Carolina Wannheden; Amanda Hellström. (Preprint). 2018, 1 .
AMA StyleMirjam Ekstedt, Kristina Schildmeijer, Camilla Wennerberg, Lina Nilsson, Carolina Wannheden, Amanda Hellström. (Preprint). . 2018; ():1.
Chicago/Turabian StyleMirjam Ekstedt; Kristina Schildmeijer; Camilla Wennerberg; Lina Nilsson; Carolina Wannheden; Amanda Hellström. 2018. "(Preprint)." , no. : 1.
BACKGROUND The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce. OBJECTIVE The aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. METHODS We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. RESULTS Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. CONCLUSIONS Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design.
Åsa Revenäs; Helena Hvitfeldt Forsberg; Emma Granström; Carolina Wannheden. Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint). 2018, 1 .
AMA StyleÅsa Revenäs, Helena Hvitfeldt Forsberg, Emma Granström, Carolina Wannheden. Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint). . 2018; ():1.
Chicago/Turabian StyleÅsa Revenäs; Helena Hvitfeldt Forsberg; Emma Granström; Carolina Wannheden. 2018. "Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint)." , no. : 1.
Summary Background: The care of HIV-related tuberculosis (HIV/TB) is complex and challenging. Clinical decision support (CDS) systems can contribute to improve quality of care, but more knowledge is needed on factors determining user acceptance of CDS. Objectives: To analyze physicians’ and nurses’ acceptance of a CDS prototype for evidence-based drug therapy recommendations for HIV/TB treatment. Methods: Physicians and nurses were involved in designing a CDS prototype intended for future integration with the Swedish national HIV quality registry. Focus group evaluation was performed with ten nurses and four physicians, respectively. The Unified Theory of Acceptance and Use of Technology (UTAUT) was used to analyze acceptance. Results: We identified several potential benefits with the CDS prototype as well as some concerns that could be addressed by redesign. There was also concern about dependence on physician attitudes, as well as technical, organizational, and legal issues. Conclusions: Acceptance evaluation at a prototype stage provided rich data to improve the future design of a CDS prototype. Apart from design and development efforts, substantial organizational efforts are needed to enable the implementation and maintenance of a future CDS system.
Helena Hvitfeldt-Forsberg; Elena Eftimovska; Katarina Westling; Johan Ellenius; Carolina Wannheden. Boosting Quality Registries with Clinical Decision Support Functionality. Methods of Information in Medicine 2017, 56, 339 -343.
AMA StyleHelena Hvitfeldt-Forsberg, Elena Eftimovska, Katarina Westling, Johan Ellenius, Carolina Wannheden. Boosting Quality Registries with Clinical Decision Support Functionality. Methods of Information in Medicine. 2017; 56 (04):339-343.
Chicago/Turabian StyleHelena Hvitfeldt-Forsberg; Elena Eftimovska; Katarina Westling; Johan Ellenius; Carolina Wannheden. 2017. "Boosting Quality Registries with Clinical Decision Support Functionality." Methods of Information in Medicine 56, no. 04: 339-343.
The treatment of patients co-infected with human immunodeficiency virus (HIV) and tuberculosis (TB) is challenging. The aim of this study was to compare socio-demographic and clinical characteristics among HIV-infected patients before and after the introduction of combined antiretroviral therapy (cART) in a Swedish cohort, and to identify factors associated with anti-TB treatment success as well as adverse reactions.
Carolina Wannheden; Maria Norrby; Ingela Berggren; Katarina Westling. Tuberculosis among HIV-infected patients in Stockholm, Sweden, 1987–2010: Treatment outcomes and adverse reactions. Scandinavian Journal of Infectious Diseases 2014, 46, 331 -339.
AMA StyleCarolina Wannheden, Maria Norrby, Ingela Berggren, Katarina Westling. Tuberculosis among HIV-infected patients in Stockholm, Sweden, 1987–2010: Treatment outcomes and adverse reactions. Scandinavian Journal of Infectious Diseases. 2014; 46 (5):331-339.
Chicago/Turabian StyleCarolina Wannheden; Maria Norrby; Ingela Berggren; Katarina Westling. 2014. "Tuberculosis among HIV-infected patients in Stockholm, Sweden, 1987–2010: Treatment outcomes and adverse reactions." Scandinavian Journal of Infectious Diseases 46, no. 5: 331-339.
Infectious Diseases Department, Karolinska University Hospital, Stockholm, Sweden.
Carolina Wannheden; Katarina Westling; Carl Savage; C Sandahl; J Ellenius. HIV and tuberculosis coinfection: a qualitative study of treatment challenges faced by care providers. The International Journal of Tuberculosis and Lung Disease 2013, 17, 1029 -1035.
AMA StyleCarolina Wannheden, Katarina Westling, Carl Savage, C Sandahl, J Ellenius. HIV and tuberculosis coinfection: a qualitative study of treatment challenges faced by care providers. The International Journal of Tuberculosis and Lung Disease. 2013; 17 (8):1029-1035.
Chicago/Turabian StyleCarolina Wannheden; Katarina Westling; Carl Savage; C Sandahl; J Ellenius. 2013. "HIV and tuberculosis coinfection: a qualitative study of treatment challenges faced by care providers." The International Journal of Tuberculosis and Lung Disease 17, no. 8: 1029-1035.