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 Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn.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.

Background: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. Objective: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. Methods: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. Results: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. Conclusions: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.

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 Identifier (IRRID): RR2-10.2196/11278

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.

The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients’ 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—ePATH (electronic Patient Activation in Treatment at Home)—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.

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: 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. Clinical Trial: ISRCTN 18055968