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Objective Falls are common in people with multiple sclerosis. There is rising interest in how the multifactorial and chronic nature of fall risk among people with multiple sclerosis can be addressed through self-management. Thus, the aims were to investigate the extent and the scope of publications on self-management of falls in people with multiple sclerosis, and to identify how the concept of self-management was defined and used. Data sources A systematic literature search in Medline, Cochrane, Web of Science and PsycInfo was conducted to identify publications until July 2022. Review methods Published methodological guidance was followed. Articles targeting: (1) people with multiple sclerosis, (2) falls, and (3) self-management were selected. Of 1656 records, 203 publications were assessed for eligibility, of which 173 did not meet the inclusion criteria, and 16 publications did not contain empirical data. The type of publication, study focus, and study design was extracted. If applicable, key findings, self-management tasks and skills, and the definition of self-management were extracted. Results Fourteen original articles met all inclusion criteria. Ten articles represented six different fall prevention interventions. Three publications were randomized controlled trials. Self-management content was variable and not comprehensive in nature. None of the 14 publications included a self-management definition. Conclusion The limited number of original articles and the even fewer intervention studies show that the research on self-management of falls in people with multiple sclerosis is in its infancy. To progress in the research area of self-management of falls, a more robust, consensus-based description of self-management frameworks and activities is needed.

Background The Patient Activation Measure (PAM) is a recognized measure of how active patients are in their care, and has been translated into several languages and cultural contexts. Patient activity, self-care, and health literacy have become increasingly important aspects of health care, and thus reliable measures of these are needed. However, a Swedish translation of PAM is currently lacking. The aim of the study was to translate and assess the validity and reliability of the Swedish PAM-13. Methods A self-report questionnaire was handed out to 521 patients at ten medical, geriatric, and surgical wards, and one Virtual Health Room. The Rasch model was employed, using the partial credit model, to assess the functioning of the PAM scale, item fit, targeting, unidimensionality, local independence, differential item functioning (DIF), and person-separation index. Evidence of substantive, content, structural, and external validity was examined. Results Of the 521 patients who were consecutively handed a questionnaire, 248 consented to participate, yielding a response rate of 47.6%. The average measure for each category advanced monotonically. The difficulty of the PAM items ranged from − 1.55 to 1.26. The infit and outfit values for the individual items were acceptable. Items 1, 2, and 4 showed disordered thresholds. The mean person location was 1.48 (SD = 1.66). The person-item map revealed that there were no item representations at the top of the scale. The evidence for unidimensionality was ambiguous and response dependency was seen in some items. DIF was found for age. The person separation index was 0.85. Conclusion The Swedish PAM-13 was reliable, but was not conclusively found to represent one underlying construct. It seems that the Swedish PAM-13 lacks strong evidence for substantive, content, and structural validity. Although valid and reliable measures of ability for activation in self-care among patients are highly warranted, we recommend further development of PAM-13 before application in everyday clinical care.

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.

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.

BACKGROUND The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. Therefore, patients’ engagement in self-managing their illness becomes increasingly important. eHealth interventions are a promising resource for the provision of adequate and timely support, but there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients with multimorbidity. OBJECTIVE To apply an evidence-based and theory-informed user-centered design approach for a) identifying the needs of older adults and healthcare professionals in the collaborative management of multimorbidity, b) developing an eHealth service to address these needs, and c) testing the feasibility and acceptance of the eHealth service in a clinical setting. METHODS A theory-driven user-centered design approach was carried out in three interconnected phases: 1) exploration of user needs with patients and healthcare professionals; 2) design and development of content and software; 3) feasibility study of the software prototype and redesign. RESULTS Phase 1 resulted in the specification of twenty-two user needs, which were grouped into five themes: diagnosis-specific information, medication management support, self-management support, care coordination support, psychosocial support. A web-based application – ePATH (electronic Patient Activation in Treatment at Home) – with separate user interfaces for patients and healthcare professionals was developed to address these needs. Two nurses and five patients tested the ePATH service in clinical practice, resulting in a refined web interface and a mobile application (mPATH) to support self-tracking and make it possible to get reminders through push notifications. The feasibility study 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. CONCLUSIONS We conclude that user engagement in design and development should not be limited to the elicitation of user needs and creation of new services but should focus more holistically on improving current practices to shape better care, which requires adequate strategies and resources to implement changes in people’s lives and complex organizations. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11625

IntroductionFalls among people with multiple sclerosis (PwMS) are common and associated with injuries, fear of falling and low health-related quality of life. Considerations of behavioural, environmental, psychological and physical influences (including ambulation status) are needed to meet fall prevention needs for PwMS. Thus, using a codesign process involving key stakeholders a novel online self-management fall prevention intervention was created specifically for ambulatory and non-ambulatory PwMS. The feasibility, acceptability, fidelity and outcome of this complex intervention will be explored. Findings will inform a future full-scale randomised controlled trial.Methods and analysisA mixed-method design will be used. Forty-eight PwMS, stratified for ambulation level, will be randomised to control (n=24) or intervention (n=24). Both groups will receive a brochure about fall risk factors and fall prevention. The intervention is group-based (eight PwMS in each group); will be delivered online; and involve six, 2-hour weekly sessions and a booster session 8 weeks after the sixth session. Each intervention group will be led by a trained facilitator. Data collection will be performed at baseline, and after seven and 18 weeks. Outcome measures will capture data on fall prevention behaviours, fear of falling, falls self-efficacy, social and everyday activities, perceived impact of MS and number of falls. Feasibility of recruitment process, data collection procedures, outcome measures, and delivery, and intervention acceptability, fidelity and outcomes will be evaluated. Both quantitative and qualitative methods will be used.Ethics and disseminationEthical approval has been obtained from the Swedish Ethical Review Authority (registration number 2021-04817). Results will be disseminated in peer-review journals, at conferences, research meetings, in social media and through the patient organisation Neuro Sweden.Trial registration numberNCT04317716.

Background Multimorbidity, the co-existence of two or more chronic conditions in an individual, is present in most patients over 65 years. Primary health care (PHC) is uniquely positioned to provide the holistic and continual care recommended for this group of patients, including support for self-management. The aim of this study was to explore professionals’, patients’, and family caregivers’ perspectives on how PHC professionals should support self-management in patients with multimorbidity. This study also includes experiences of using telemedicine to support self-management. Methods A mixed qualitative method was used to explore regular self-management support and telemedicine as a tool to support self-management. A total of 42 participants (20 physicians, 3 registered nurses, 12 patients, and 7 family caregivers) were interviewed using focus group interviews (PHC professionals), pair interviews (patients and family caregivers), and individual interviews (registered nurses, patients, and family caregivers). The study was performed in urban areas in central Sweden and rural areas in southern Sweden between April 2018 and October 2019. Data were analyzed using content analysis. Results The main theme that emerged was “Standing on common ground enables individualized support.” To achieve such support, professionals needed to understand their own views on who bears the primary responsibility for patients’ self-management, as well as patients’ self-management abilities, needs, and perspectives. Personal continuity and trustful relationships facilitated this understanding. The findings also indicated that professionals should be accessible for patients with multimorbidity, function as knowledge translators (help patients understand their symptoms and how the symptoms correlated with diseases), and coordinate between levels of care. Telemedicine supported continual monitoring and facilitated patient access to PHC professionals. Conclusion Through personal continuity and patient-centered consultations, professionals could collaborate with patients to individualize self-management support. For some patients, this means that PHC professionals are in control and monitor symptoms. For others, PHC professionals play a less controlling role, empowering patients’ self-management. Development and improvement of eHealth tools for patients with multimorbidity should focus on improving the ability to set mutual goals, strengthening patients’ inner motivation, and including multiple caregivers to enhance information-sharing and care coordination.

To explore the perceived quality of care transitions from hospital to the home with referral to subsequent rehabilitation in the home, and factors associated with low perceived quality, in people with stroke.Observational study.Eligible were patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region and discharged home with referral to a neurorehabilitation team in primary care.Data on perceived quality of care transition was collected with the Care Transition Measure (CTM-15) 1 week after discharge. Additional data were mainly retrieved from medical records. To analyze difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable regression analyses were performed. Thereafter, multivariable regression models were created to explore associations between low perceived quality and the independent variables.Mean age of the 189 participants was 75 years and 91% had a mild or very mild stroke. The majority perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. The association was weak between patient or clinical characteristics and the perceived quality.Our findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition after stroke. Special attention should be given to people with severe stroke.

Research use and evidence-based practice among Swedish medical social workers : a qualitative study

ObjectivesThe aim of this study was to describe challenges in self-management activities among people with multimorbidity during a 4-week post-discharge period.DesignThis is a longitudinal qualitative study using data from a randomised controlled trial (RCT) of motivational interviewing (MI) sessions.SettingThe RCT was conducted at six wards in two hospitals—one university hospital and one general hospital in Stockholm, Sweden, during 2016–2018.ParticipantsSixteen participants from the intervention group, diagnosed with heart failure or chronic obstructive pulmonary disease and at least one other chronic condition, were purposively selected for this study.InterventionsEach participant had four or five post-discharge MI sessions with a trained social worker during a period of approximately 4 weeks. The sessions were recorded digitally and analysed using content analysis. Altogether, 70 recorded sessions were analysed.ResultsSelf-management after hospital discharge was a dynamic process with several shifting features that evolved gradually over time. Patients with multimorbidity experienced two major challenges with self-management in the first 4 weeks following hospital discharge: ‘Managing a system-centred care’ and ‘Handling the burden of living with multiple illnesses at home post-discharge’.ConclusionsSelf-management for patients with multimorbidity in the first post-discharge period does not equate to a fixed set of tasks, but varies over the post-discharge period. Self-management challenges include not only the burden of the disease itself, but also that of navigating and understanding the healthcare system. Hence, self-management support post-discharge involves both aiding patients with care coordination and meeting their gradually shifting disease-related needs.Trial registration numberNCT02823795.

Introduction: Of the 25.000 persons suffering a stroke each year in Sweden, 90% are treated in stroke units at hospital. After the hospital, a period of rehabilitation is needed to regain functions that have been affected. However, there is a lack of knowledge on how patients in Sweden perceive the current care transitions. The aim of this study is to explore the perceived quality of care transitions between hospital and the home for patients with stroke. Methods: A total of 200 patients with stroke referred from stroke unit to home rehabilitation will be included. To date, approximately 185 patients have been included from five wards stroke and geriatric at three different hospitals. One week after discharge, the perceived quality of care transitions are assessed with the Care Transitions Measure CTM. The CTM consists of 15 items covering different areas such as critical understanding, preferences important, management preparation, and care plan. Baseline data on age, sex and stroke severity are collected from the patients’ hospital medical records. Results: The preliminary results from 80 participants with a mild stroke 53 men, mean age 70 years, show that a majority perceived a high quality of care transitions. However, 26% did not perceive that they had clear health goals or knew how to reach them; 30% did not know what warning signs and symptoms to watch out; and 20% lacked a readable and understandable written healthcare plan. Further, 24% perceived they had a poor understanding about their health and 29% lacked written understandable information about plans after discharge. In addition, 46% had not clearly understood the possible side-effects of their medications. Discussions: These preliminary findings have shown that there is room for improvement regarding the transition process. The participants had a mild stroke and where all discharged to their home for continued rehabilitation in the home environment. This meant that the patients would get home visits from rehabilitation staff but overall manage their rehabilitation training on their own. This stresses the importance of preparing the discharge from the stroke unit to the home. Extra attention should be made stating clear health goals and informing about how further health care needs can be met. Conclusions: The preliminary conclusion is the staff at stroke units should acknowledge the importance of informing about subsequent care and rehabilitation after discharge. Specific attention should also be drawn towards self-monitoring and increasing patient knowledge about potential side-effects of their medications. Lessons learned: Even patients with a mild stroke experience problems in the discharge from hospital to home which emphasize further analysis on patients with more severe forms of stroke. Limitations: A limitation of the study is that the questionnaire was only distributed in Swedish and that no aid was provided to help patients with affected cognitive functions. We hence lack information on how especially vulnerable groups perceive the quality of care transitions. Suggestions for future research: Future research should focus on how the discharge could include patients and family care givers in the goal setting including self-monitoring and medication awareness.

Objective: The aim of the present study was to compare client-centeredness as it was documented by the occupational therapists in the units randomized to the intervention clusters with documentation by occupational therapists in the control clusters. Design: Comparison of medical records. Setting: The study is conducted in a context of a randomized controlled trial in Sweden, with 16 post-stroke rehabilitation units cluster randomized to intervention or control group. Subjects: Occupational therapist documentation in medical records of 279 clients with stroke. Main measures: The medical records were reviewed for their level of client-centeredness using a protocol developed from the Stewart et al model. The occupational therapists in the intervention groups participated in a workshop training to enhance their client-centeredness. Results: Occupational therapists with training in client-centeredness documented significantly more on goal setting (OR = 4.1; 95% CI, 1.87-8.81), on client participation in goal setting (OR=11.34; 95% CI, 5.97-21.57), on how the goals could be reached (OR=2.8; 95% CI, 1.7-4.62), on client participation in how goals could be reached (OR=4.56; 95% CI, 2.73-7.64), on the follow-up on goals (OR=5.77; 95% CI, 2.78-11-98) and on client participation in follow-up on goals (OR=7.44, 95% CI, 4.33-12.8). This association remained after adjustment for healthcare setting, client socio-demographic variables, and stroke severity. Conclusion: Documentation of goal setting and client participation in goal setting can be influenced by training.

In previous research we have learned that patients with chronic or complex diseases often experience difficulties when transitioning from hospital care to self-care in their home. We address these difficulties by developing an eHealth tool for patients - ePATH (electronic Patient Activation in Treatment at Home) - intended to empower each patient to manage their individual situation. We have employed a user-centered design process involving both patients and healthcare personnel to specify the content and functionality of ePATH. The system is deployed as a web application with secure login for patients. In this article, we describe the main content and functionality of the system that makes it possible for a patient to manage symptoms development in relation to treatment progression Interactive functionality, e.g., reminders and social support, is included to make the ePATH a useful and informative bridge between patients, next-of-kin and different caregivers. One lesson learned is that it is necessary to incorporate motivational components in the development of an eHealth tool to successfully overcome the "intention-behavior" gap. The self-determination theory of motivation can be used to ensure that important aspects are not missed.

ObjectiveThe objective of the study was to compare the total use of healthcare services in the course of the first year after a stroke between participants who, after the acute care, had received occupational therapy as a client-centred activities of daily living (ADL) intervention (CADL) and participants who had received usual ADL intervention (UADL).DesignA secondary analysis of a multicentre cluster-randomised controlled trial (RCT).SettingPrimary and secondary care in Sweden.ParticipantsParticipants were included if they: (1) had received CADL or UADL in the RCT, either as inpatients in geriatric rehabilitation units or in their own homes, and (2) data could be retrieved about their use of healthcare services provided by the county council from computerised registers.InterventionsCADL or UADL.Outcome measuresInpatient and outpatient healthcare in the course of the first year after stroke.ResultsParticipants from 7 of the 16 units included in the RCT met the criteria. Participants in the CADL group (n=26) who received geriatric inpatient rehabilitation had a shorter length of hospital stay (p=0.03) than participants in the UADL group (n=46), and the CADL group with home rehabilitation (n=13) had fewer outpatient contacts (p=0.01) compared with the UADL group (n=25). Multiple regression analyses showed that in four of the models, a higher age was associated with a lower use of healthcare services. The use of healthcare services was also associated (some of the models) with dependence in ADL, stroke severity and type of rehabilitation received, CADL or UADL.ConclusionsThe provision of client-centred occupational therapy after stroke did not appear to increase the use of healthcare services during the first year after stroke.rrrrrTrial registration numberNCT01417585.

Background Handovers between hospital and primary healthcare possess a risk for patient care. It has been suggested that the exchange of a comprehensive medical record containing both medical and patient-centered aspects of information can support high quality handovers. Objective The objective of this study was to explore patient handovers between primary and secondary care by assessing the levels of patient-centeredness of medical records used for communication between care settings and by assessing continuity of patient care. Methods Quantitative content analysis was used to analyze the 76 medical records of 22 Swedish patients with chronic diseases and/or polypharmacy. Results The levels of patient-centeredness documented in handover records were assessed as poor, especially in regards to informing patients and achieving a shared understanding/agreement about their treatment plans. The follow up of patients’ medical and care needs were remotely related to the discharge information sent from the hospital to the primary care providers, or to the hospital provider's request for patient follow-up in primary healthcare. Conclusion The lack of patient-centered documentation either indicates poor patient-centeredness in the encounters or low priority given by the providers on documenting such information. Based on this small study, discharge information sent to primary healthcare cannot be considered as a means of securing continuity of patient care. Healthcare providers need to be aware that neither their discharge notes nor their referrals will guarantee continuity of patient care.

Background Medication management is a complex, error-prone process. The aim of this study was to explore what constitutes the complexity of the medication management process (MMP) in specialized home healthcare and how healthcare professionals handle this complexity. The study is theoretically based in resilience engineering. Method Data were collected during the MMP at three specialized home healthcare units in Sweden using two strategies: observation of workplaces and shadowing RNs in everyday work, including interviews. Transcribed material was analysed using grounded theory. Results The MMP in home healthcare was dynamic and complex with unclear boundaries of responsibilities, inadequate information systems and fluctuating work conditions. Healthcare professionals adapted their everyday clinical work by sharing responsibility and simultaneously being authoritative and preserving patients’ active participation, autonomy and integrity. To promote a safe MMP, healthcare professionals constantly re-prioritized goals, handled gaps in communication and information transmission at a distance by creating new bridging solutions. Trade-offs and workarounds were necessary elements, but also posed a threat to patient safety, as these interim solutions were not systematically evaluated or devised learning strategies. Conclusions To manage a safe medication process in home healthcare, healthcare professionals need to adapt to fluctuating conditions and create bridging strategies through multiple parallel activities distributed over time, space and actors. The healthcare professionals’ strategies could be integrated in continuous learning, while preserving boundaries of safety, instead of being more or less interim solutions. Patients’ and family caregivers’ as active partners in the MMP may be an underestimated resource for a resilient home healthcare.

OBJECTIVES: To provide a comprehensive overview of health economic evaluations of patient education interventions for people living with chronic illness.METHODS: Relevant literature published between 2000 and 2016 has been comprehensively reviewed, with attention paid to variations in study, intervention, and patient characteristics.RESULTS: Of the 4693 titles identified, 56 articles met the inclusion criteria and were included in this scoping review. Of the studies reviewed, 46 concluded that patient education interventions were beneficial in terms of decreased hospitalization, visits to Emergency Departments or General Practitioners, provide benefits in terms of quality-adjusted life years, and reduce loss of production. Eight studies found no health economic impact of the interventions.CONCLUSIONS: The results of this review strongly suggest that patient education interventions, regardless of study design and time horizon, are an effective tool to cut costs. This is a relatively new area of research, and there is a great need of more research within this field.PRACTICE IMPLICATIONS: In bringing this evidence together, our hope is that healthcare providers and managers can use this information within a broad decision-making process, as guidance in discussions of care quality and of how to provide appropriate, cost-effective patient education interventions.

Introduction Deficient hospital discharging and patients struggling to handle postdischarge self-management have been identified as potential causes of re-hospitalisation rates. Despite an increased interest in interventions aiming to reduce re-hospitalisation rates, there is yet no best evidence on how to support patients in being active participants in their self-management postdischarge. The aim of this paper is to describe the study protocol for an upcoming randomised controlled trial (RCT) of the Supporting Patient in Activation to Home (sPATH) intervention. Methods/analysis The described study is a randomised, controlled, analysis-blinded, two-site trial, with primary outcome re-hospitalisation within 90 days. In total, 290 participants aged 18 years or older with chronic obstructive pulmonary disease or congestive heart failure who are admitted to hospital and who are living in an own home will be eligible for inclusion into an intervention (n=145) or control group (n=145). Patients who need an interpreter to communicate in Swedish, or who have a diagnosis of dementia or cognitive impairment, will be excluded from inclusion. The sPATH intervention, developed with a theoretical base in the self-determination theory, consists of five postdischarge motivational interviewing sessions (face to face or by phone). The intervention covers the self-management areas medication management, follow-up/care plan, symptoms/signs of worsening condition and relations/contacts with healthcare providers. This RCT will add to the literature on evidence to support patient activation in postdischarge self-management. Ethics and dissemination The study is approved by the Regional Research Ethics Committee (No. 2014/1498-31/2) in Stockholm, Sweden. The results of the study will be published in peer-reviewed journals and presented at international and national scientific conferences. Trial registration number NCT02823795; Pre-results.

Introduction : The burden of chronic diseases is expected to escalate worldwide. Despite extensive use of emergency rooms and specialized care of persons with multiple or chronic diseases, the majority of the time care is managed in the patient’s home. For patients, living with chronic illnesses can be highly demanding, requiring them to manage their symptoms, disabilities and complex medical regimens at home. Effectively functioning in the role of self-manager requires a high level of knowledge, skill, and confidence. In order to handle these challenges, new models for care are required. eHealth solutions, successfully implemented in everyday clinical practice have shown significant effects on symptom management and self-efficacy, improving quality of care. Despite the wide proliferation and everyday use of consumer technology as well as eHealth solutions, the contribution of eHealth solutions in enhancing patients’ activation in self-management of their care is an underdeveloped field. Therefore, we undertake a long-term project of developing an eHealth solution where patients and care-givers are active stakeholders, and in parallel, paving the way for clinical ownership of the eHealth solution, in order to evaluate it in a randomized controlled study. The aim of this abstract is to describe the user-centered design in the development of an eHealth service. Theory and Method : We report process data from an ongoing study; aiming to improve transitional care by focusing on patient activation and participation during the critical post-hospitalization phase. We draw upon principals of the evidence-based Care Transition Intervention, which will be integrated into an eHealth solution, as a ‘digital coach’ to support patients’ self- management. We have identified four pillars that will form the foundation of the eHealth solution: care plan, medication self-management, symptom management, and contact information to relevant care-givers. In the first phase of the project, we have utilized a user-centered design process by engaging patients and care-givers in interviews, workshops and design activities. Results from these activities are documented in user-centered material such as patient journeys, effect maps, and prototypes of the eHealth solution. This material has been directly fed into the development of the technical solution, making us confident that the proposed solution will solve concrete user needs. At the same time, we make long-term collaborations with the care-givers and departments, from where the eHealth solution will be distributed to patients in the study. Progress report : A number of observational and design activities have been conducted with both patients and care-givers, at two different hospitals. User context has been documented in patient journeys, which describe a typical patient’s journey from first symptom through medical evaluation and treatment, up to living with the disease or complications of the treatment. The patient journey describes, in different stages, how the patient´s feels, their contact with health care, what information they receives and requires, and what examinations and treatments they undergoes. Visualizing health care from the patient’s perspective in this manner helps identifying gaps in e.g. information needs and to position the eHealth solution in situations where it can solve concrete needs. Furthermore, user needs have been captured in effect maps, which connect hands-on needs or functionality with high-level goals (e.g. ultimately enhanced patient activation and reduced re-hospitalization). As of now, in the second phase of the project, development of technical solution has commenced, and we are planning for pilot testing in the next couple of months. Discussion and conclusions : eHealth solutions play an important part in improving activation and awareness. However, it is not simply solved by the sheer introduction of eHealth solutions we have learned that it requires: - Successful implementation in the health care processes, as personnel should feel an ownership of the eHealth solution in order to perceive it as an effective tool in their communication with patients and collaboration with other care givers. - Presentation of relevant feedback to patients, in order for them to learn about their own disease and symptoms, and to be actively engaged in self-management at home Using motivational gamification in eHealth solutions will help to capture patients’ interest to take active role in their own care, and to motivate patients to learn and maintain self-management knowledge and skills. - Fitting it into the existing eco system of technical solutions for health care as well as patient- and lifestyle-centered applications.

Item does not contain fulltext BACKGROUND: Organizational culture is seen as having a growing impact on quality and safety of health care, but its impact on hospital to community patient discharge is relatively unknown. OBJECTIVES: To explore aspects of organizational culture to develop a deeper understanding of the discharge process. RESEARCH DESIGN: A qualitative study of stakeholders in the discharge process. Grounded Theory was used to analyze the data. SUBJECTS: In 5 European Union countries, 192 individual and 25 focus group interviews were conducted with patients and relatives, hospital physicians, hospital nurses, general practitioners, and community nurses. RESULTS: Three themes emerged representing aspects of organizational culture: a fragmented hospital to primary care interface, undervaluing administrative tasks relative to clinical tasks in the discharge process, and lack of reflection on the discharge process or process improvement. Nine categories were identified: inward focus of hospital care providers, lack of awareness to needs, skills, and work patterns of the professional counterpart, lack of a collaborative attitude, relationship between hospital and primary care providers, providing care in a "here and now" situation, administrative work considered to be burdensome, negative attitude toward feedback, handovers at discharge ruled by habits, and appreciating and integrating new practices. CONCLUSIONS: On the basis of the data, we hypothesize that the extent to which hospital care providers value handovers and the outreach to community care providers is critical to effective hospital discharge. Community care providers often are insufficiently informed about patient outcomes. Ongoing challenges with patient discharge often remain unspoken with opportunities for improvement overlooked. Interventions that address organizational culture as a key factor in discharge improvement efforts are needed.

Background: Safe patient transitions depend on effective communication and a functioning care coordination process. Evidence suggests that primary care physicians are not satisfied with communication at transition points between inpatient and ambulatory care, and that communication often is not provided in a timely manner, omits essential information, or contains ambiguities that put patients at risk. Objective: Our aim was to demonstrate how process mapping can illustrate current handover practices between ambulatory and inpatient care settings, identify existing barriers and facilitators to effective transitions of care, and highlight potential areas for quality

Background \ud \ud We developed a method to estimate the expected cost-effectiveness of a service intervention at the design stage and ‘road-tested’ the method on an intervention to improve patient handover of care between hospital and community.\ud \ud Method \ud \ud The development of a nine-step evaluation framework:\ud \ud 1. Identification of multiple endpoints and arranging them into manageable groups;\ud \ud 2. Estimation of baseline overall and preventable risk;\ud \ud 3. Bayesian elicitation of expected effectiveness of the planned intervention;\ud \ud 4. Assigning utilities to groups of endpoints;\ud \ud 5. Costing the intervention;\ud \ud 6. Estimating health service costs associated with preventable adverse events;\ud \ud 7. Calculating health benefits;\ud \ud 8. Cost-effectiveness calculation;\ud \ud 9. Sensitivity and headroom analysis.\ud \ud Results\ud \ud Literature review suggested that adverse events follow 19% of patient discharges, and that one-third are preventable by improved handover (ie, 6.3% of all discharges). The intervention to improve handover would reduce the incidence of adverse events by 21% (ie, from 6.3% to 4.7%) according to the elicitation exercise. Potentially preventable adverse events were classified by severity and duration. Utilities were assigned to each category of adverse event. The costs associated with each category of event were obtained from the literature. The unit cost of the intervention was €16.6, which would yield a Quality Adjusted Life Year (QALY) gain per discharge of 0.010. The resulting cost saving was €14.3 per discharge. The intervention is cost-effective at approximately €214 per QALY under the base case, and remains cost-effective while the effectiveness is greater than 1.6%.\ud \ud Conclusions \ud \ud We offer a usable framework to assist in ex ante health economic evaluations of health service interventions.

Background: Communication between healthcare settings at patient transfers between primary and secondary care, ‘handover’, is a critical and risky process for patients. Patients’ views on their roles in these processes are often lacking despite the knowledge that patient participation contributes to enhanced safety and wellbeing. Objective: This study aims to improve the knowledge and understanding of patients’ perspectives about their participation in handover. Methods: Twenty-three Swedish patients with chronic diseases were individually interviewed about their experiences with handovers between three clinical microsystems: emergency room, emergency ward and primary healthcare centres. Data were analysed using inductive qualitative content analysis. Results: Patients participated within the microsystems by exchanging information, and between microsystems by making contact with and conveying information to their next healthcare provider. Enablers for participation included positive encounters with providers, patient empowerment and beliefs about organisational factors. Patients’ trust in their providers, and providers’ attitudes were important factors in patients’ willingness to communicate. Patients who thought medical records access was shared across microsystems volunteered less information to their providers. Patients with experiences of non-effective handovers took more responsibility in the handover to ensure continuity of care. Conclusions: Patients participate actively in handovers when they feel a need for involvement to ensure continuity of care, and are less active when they perceive that their contribution is unnecessary or not valued. In acute care settings with short hospital stays and less time to establish a trusting relationship between patients and their providers, discharge encounters may be important enablers for patient engagement in handovers. The advantages of a redundant handover process need to be considered.

Background: Patient safety experts have postulated that increasing patient participation in communications during patient handovers will improve the quality of patient transitions, and that this may reduce hospital readmissions. Choosing strategies that enhance patient safety through improved handovers requires better understanding of patient experiences and preferences for participation. Objective: The aim of this paper is to explore the patients' experiences and perspectives related to the handovers between their primary care providers and the inpatient hospital. Methods: A qualitative secondary analysis was performed, based on individual and focus group patient interviews with 90 patients in five European countries. Results: The analysis revealed three themes: patient positioning in the handover process; prerequisites for patient participation and patient preferences for the handover process. Patients' participation ranged from being the key actor, to sharing the responsibility with healthcare professional(s), to being passive participants. For active participation patients required both personal and social resources as well as prerequisites such as information and respect. Some patients preferred to be the key actor in charge; others preferred their healthcare professionals to be the key actors in the handover. Conclusions: Patients' participation is related to the healthcare system, the activity of healthcare professionals' and patients' capacity for participation. Patients prefer a handover process where the responsibility is clear and unambiguous. Healthcare organisations need a clear and well-considered system of responsibility for handover processes, that takes into account the individual patient's need of clarity, and support in relation to his/hers own recourses.

Background: In the wake of demographic changes, with a growing and aging population living with a diversity of long-term and complex conditions, there is an urgent need for cost-effective care. Concurrent ideological voices, advocating greater citizen involvement, autonomy and freedom of choice and the bolstering of private markets for social care services and products, raise a number of competing and contradictory demands. In the face of these global challenges, Swedish healthcare, like that in many other countries, has undergone a number of reforms. The changes made, aiming to improve effectiveness and quality, have rather led to increased specialization, division of roles and responsibilities, making it hard to see how integrated care services that bridge institutional borders can be supported. To meet the increasing burden of cancer treatment and the need for better coordination and integration of the different clinical aspects involved in cancer care, the Swedish government recently launched a national reform to standardize cancer patient pathways. Prostate cancer is one of five cancer diagnoses for which a clinical chain of care was introduced in early 2015, operationalized as a standardized package. In this paper, we illustrate the dilemmas that arise and the conflicting demands that need to be managed with the introduction of a standardized patient pathway for prostate cancer patients. The aim was to describe how patients diagnosed with prostate cancer experienced their pathway through the healthcare system and to compare with the journey described in healthcare policy documents. Methods: Fourteen individual interviews were conducted with patients who had undergone treatment for prostate cancer at a mid-sized hospital in southeast Sweden. As a basis for the interviews, a template with a generic scheme for a standardized cancer patient pathway was used. Interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: We found that the clinical view of the standardized cancer pathway as a ‘straight line’ through the health care system was rather experienced as ‘riding an undesirable rollercoaster’ from the patients’ point of view. Lack of personalized and timely, coordinated information was the most common experience. Although lead times between test and diagnosis or between diagnosis and treatment were shortened within standardized frames, the patients’ experiences of ‘waiting’ were of an existential nature: a matter relating to life and death. Patients described being left in a void between planned visits to the hospital. Integration of support from professionals or other caregivers was not sufficiently included in the standardized cancer pathways. Discussion: This study highlights that implementation of standardized care pathways for specific patient groups, such as prostate cancer patients, aimed to make care more efficient, may not be compatible with other ideological incentives, such as personalization, integration and equity of care for all patient groups.

Background There is a growing impetus to reorganize the hospital discharge process to reduce avoidable readmissions and costs. The aim of this study was to provide insight into hospital discharge problems and underlying causes, and to give an overview of solutions that guide providers and policy-makers in improving hospital discharge. Methods The Intervention Mapping framework was used. First, a problem analysis studying the scale, causes, and consequences of ineffective hospital discharge was carried out. The analysis was based on primary data from 26 focus group interviews and 321 individual interviews with patients and relatives, and involved hospital and community care providers. Second, improvements in terms of intervention outcomes, performance objectives and change objectives were specified. Third, 220 experts were consulted and a systematic review of effective discharge interventions was carried out to select theory-based methods and practical strategies required to achieve change and better performance. Results Ineffective discharge is related to factors at the level of the individual care provider, the patient, the relationship between providers, and the organisational and technical support for care providers. Providers can reduce hospital readmission rates and adverse events by focusing on high-quality discharge information, well-coordinated care, and direct and timely communication with their counterpart colleagues. Patients, or their carers, should participate in the discharge process and be well aware of their health status and treatment. Assessment by hospital care providers whether discharge information is accurate and understood by patients and their community counterparts, are important examples of overcoming identified barriers to effective discharge. Discharge templates, medication reconciliation, a liaison nurse or pharmacist, regular site visits and teach-back are identified as effective and promising strategies to achieve the desired behavioural and environmental change. Conclusions This study provides a comprehensive guiding framework for providers and policy-makers to improve patient handover from hospital to primary care. Electronic supplementary material The online version of this article (doi:10.1186/1472-6963-14-389) contains supplementary material, which is available to authorized users.

Introduction : In recent years much attention has been given to care transitions between healthcare settings and to re-hospitalizations. This is not without reason. Errors in medication, therapy, and in follow-up of tests and procedures following hospitalization are not uncommon and the associated costs are profound. Putting effort on increasing patients’ knowledge on disease control and symptom management has shown an effect on decreased re-hospitalization rates. Yet, little is known about how the information aimed to prepare patients are given to patients during hospital discharge, and how the information make sense to the patients. This study aims to explore how the hospital discharge process provides a learning environment for patients’ understanding of their self-management. Theory/Methods : This study uses observational multiple-case study design. The cases – three wards of internal medicine from different hospital types: one regional, one general and one university hospital, all located in the county council of Stockholm, Sweden – were selected to allow inclusion of patients with varying diagnoses and backgrounds. The observations primarily focused on the discharge encounters but included other events where patient self-management learning was considered to either take place or be discussed: medical distribution, bedside rounds, formal/informal meetings between patients and healthcare professionals. After the observed discharge encounters, patients and their present next-of-kin who agreed to participate in the study, and thereafter the discharging healthcare professional were interviewed. Semi-structured interview guides were used. Data was analysed using cross-case synthesis in which the case under study at each units first were analysed separately, using content analysis, where after the analyses were compared and cross-case conclusions drawn. Results : The wards were overall similar in the prerequisites for patient understanding of self-management in the hospital discharge process. Patient understanding of self-management were supported or constrained during the medical distribution by the registered nurses, the bedside rounds and the discharge encounters. Each of these encounters provided opportunities for the patients to learn about self-management, and for the healthcare professionals to gain and provide information to support the patients’ self-management. Patients were not involved in the decisions preceding discharge. The bed-side rounds overall focused on giving informations to patients and not on involving patients in the communication. The short hospital stays were considered as barriers for patient self-management learning; the patients were too stressed at the discharge encounters to grasp the information and the healthcare professionals lacked time to grasp the patients’ situation and needs. The healthcare professionals used several pedagogical efforts to facilitate patient understanding. The efforts were however not a conscious thought-through strategy and the professionals expressed uncertainty whether the patients had understood the information or not. Upon discharge, patients received a plain language written discharge note and medication list. The oral information followed the structure of the discharge letter, omitting self-management activities. Patients’ made several efforts to facilitate their understanding, they checked that they had understood the healthcare professional, asked for clarification and confirmed when they had understood. Discussion : The discharge letter constituted the base of the discharge information, as both the oral and written information given by the physician sprung out of the letter. As we found that the discharge letter overall had a retrospective focus it only gives patients limited understanding of self-management activities post-discharge. Much time and effort was put into providing patients with accurate information and to facilitate the practical details of the discharge. However, only a small amount of effort was given to involve patients in the decisions, to ensure that patients had understood the information and had the skills to manage the self-management needed. Evidence suggests that information alone does not promote patient adherence to medications. A targeted, person-centred communication, in order to reach common ground for decision-making, is far from realized in healthcare. In contrast we found that patients were not actively involved in the planning of their discharge, and that sensemaking rarely came through in the discharge encounters. Conclusion : The information given at discharge was driven by the needs of the staff of communicating information, rather than patients´ needs or level of understanding. Simple use of pedagogical teaching and patients’ involvement in the decisions preceding discharges with the aim of ensuring patient understanding has the potential to enhance patient self-management knowledge, whereas a system accountability overlapping the gaps could provide patients with comfort to put knowledge into action.

Background: Advocates for quality and safety havecalled for healthcare that is patient-centred anddecision-making that involves patients.Objective: The aim of the paper is to explore thebarriers and facilitators to patient-centred care in thehospital discharge process.Methods: A qualitative study using purposive samplingof 192 individual interviews and 26 focus groupinterviews was conducted in five European Unioncountries with patients and/or family members,hospital physicians and nurses, and community generalpractitioners and nurses. A modified Grounded Theoryapproach was used to analyse the data.Results: The barriers and facilitators were classified into15 categories from which four themes emerged:(1) healthcare providers do not sufficiently prioritisedischarge consultations with patients and family membersdue to time restraints and competing care obligations;(2) discharge communication varied from instructingpatients and family members to shared decision-making;(3) patients often feel unprepared for discharge, andpostdischarge care is not tailored to individual patientneeds and preferences; and (4) pressure on availablehospital beds and community resources affect thedischarge process.Conclusions: Our findings suggest that involvement ofpatients and families in the preparations for discharge isdetermined by the extent towhich care providers arewillingand able to accommodate patients’ and families’ capabilities,needs and preferences. Future interventions should bedirected at healthcare providers’ attitudes and theirorganisation’s leadership, with afocus on improvingcommunication among care providers, patients and families,and between hospital and community care providers.

Background: A multicentre, multinational research study requires careful planning and coordination to accomplish the aims of the study and to ensure systematic and rigorous examination of all project methods and data collected. Objective: The aim of this paper is to describe the approach we used during the HANDOVER Project to develop a multicentre, multinational research project for studying transitions of patient care while creating a community of practice for the researchers. Method: We highlight the process used to assure the quality of a multicentre qualitative study and to create a codebook for data analysis as examples of attending to the community of practice while conducting rigorous qualitative research. Findings: Essential elements for the success of this multinational, multilanguage research project included recruiting a strong research team, explicit planning for decision-making processes to be used throughout the project, acknowledging the differences among the study settings and planning the protocols to capitalise upon those differences. Conclusions: Although not commonly discussed in reports of large research projects, there is an underlying, concurrent stream of activities to develop a cohesive team that trusts and respects one another’s skills and that engage independent researchers in a group process that contributes to achieving study goals. We discuss other lessons learned and offer recommendations for other teams planning multicentre research.