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AIM: To review the evidence of the existing literature on the impact of guided self-determination across methodologies in different healthcare settings.METHODS: An integrated five-stage review.RESULTS: Forty-five eligible papers were included. Guided self-determination was applied in full- or small-scale, or combined with another intervention or approach in different healthcare settings handling, for example diabetes, stroke survivorship, schizophrenia, attention-deficit hyperactivity disorder and medical disorder, gynaecological and breast cancer, endometriosis, persons with chronic pain, persons in haemodialysis and intensive care survivors. The included studies covered 12 randomised trials, 26 qualitative and seven papers of different methodology. A statistically significant effect was found in three trials. Six main themes describe the qualitative findings across papers on patients: (1) Guided self-determination reduces disease-related loneliness, (2) Insight enables integration of life and disease, (3) Reflection sheets-appreciated but challenging tool to prompt insights and person-specific knowledge, (4) New person-specific knowledge enables person-centred support, (5) Feeling seen and believed in a new and trusted relationship and (6) Exchange of knowledge enables the development of life skills. Four themes describe the healthcare professionals' experience: (1) Change of usual practice-a decision from above, (2) A new role-unlearning previous behaviour and need for support, (3) Reflection sheets as facilitators and barriers and (4) Discovering the benefits of changing to a person-centred approach.CONCLUSION: Overall, guided self-determination proved to have a great impact on patient important outcomes and was useful and well-accepted by the majority of patients and healthcare professionals. Albeit guided self-determination is not a 'one size fits all' method. Continuous training and supervision of professionals are a necessary mean when implementing guided self-determination to enhance adoption and sustainability in clinical practice.

People with schizophrenia have shortened life expectancy partly due to physical ill health. Management of coexisting mental and physical health issues is complex, and knowledge in the field is lacking. This study investigated how physical health was managed among people with schizophrenia, by integrating findings from three separate analyses conducted in an ethnographic study. Qualitative data generation methods were used; 505 h of field work were undertaken among nine participants with schizophrenia and 27 mental healthcare professionals were interviewed using a semi-structured interview approach. Three separate analyses were conducted using thematic and discourse analysis. Progressive focusing was used to integrate findings. Across the mental health care contexts that were part of this research, managing physical health was characterised by a lack of recognition of the seriousness of physical health issues as part of everyday life among people with schizophrenia. Poor physical health was accounted for as being “not of importance” by both mental health care professionals and the participants experiencing physical health issues. The integrated findings offer new insights about the social co-construction of poor physical health as something normal. At the individual level, this shared understanding by people with schizophrenia and healthcare professionals contributed to sustaining inexpedient management strategies of “modifying” behaviour or “retreating” from everyday life when physical health issues were experienced.

Background Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. Objective We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. Methods This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). Results The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. Conclusions The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention’s improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

PurposeTo explore and describe the enactment of user involvement and combined care in a Danish clinic that aimed at providing integrated diabetes and mental health care.DesignAn ethnographic study.Data Sources and MethodsData consisted of field notes from 96 hours of participant observations and field notes from 32 informal conversations with healthcare providers, users and relatives as well as 12 semistructured interviews with users. Data were analysed using a thematic analysis. This study reports to the SRQR guidelines.ResultsTreatment was not combined as intended if only one healthcare provider handled the consultations. Here, the healthcare providers' focus was often on their own area of expertise—either mental health or diabetes. If more than one healthcare provider handled consultations, the consultations were often divided between them, focussing on one condition at the time. Healthcare providers noted, that learning from peer colleagues was a way to increase the possibility for combined care. Furthermore, combined care was highly dependent on the healthcare providers' ability to involve users' illness experiences in their own care planning. Here, a high level of user involvement increased the levels of combined care during consultations.ConclusionThis study set out to explore and describe user involvement and combined care in a specialised diabetes and mental health outpatient clinic. Combined care is complexed and requires that healthcare providers are well-equipped to manage the complexity of delivering care for people with both conditions. The degree of combined care was linked with the healthcare providers' ability to involve users and their knowledge on the condition outside there are of expertise.Relevance to Clinical PracticeA peer-learning environment in combination with clinical guidelines and joint display could support healthcare providers in involving users in own care and when delivering care outside their area of expertise.Public contributionNo patient or public contribution. Due to the COVID-19 pandemic, the original user council withdraw their consent to participate due to health-related worries and anxiety concerning the pandemic. The user council consisted of three members diagnosed with diabetes and severe mental illness. They were invited to participate in physical meetings, phone or online meetings. Presenting findings from the study to the study participants were also hindered by the second lockdown. This influenced the possibility for data triangulation. PurposeTo explore and describe the enactment of user involvement and combined care in a Danish clinic that aimed at providing integrated diabetes and mental health care.DesignAn ethnographic study.Data Sources and MethodsData consisted of field notes from 96 hours of participant observations and field notes from 32 informal conversations with healthcare providers, users and relatives as well as 12 semistructured interviews with users. Data were analysed using a thematic analysis. This study reports to the SRQR guidelines.ResultsTreatment was not combined as intended if only one healthcare provider handled the consultations. Here, the healthcare providers' focus was often on their own area of expertise—either mental health or diabetes. If more than one healthcare provider handled consultations, the consultations were often divided between them, focussing on one condition at the time. Healthcare providers noted, that learning from peer colleagues was a way to increase the possibility for combined care. Furthermore, combined care was highly dependent on the healthcare providers' ability to involve users' illness experiences in their own care planning. Here, a high level of user involvement increased the levels of combined care during consultations.ConclusionThis study set out to explore and describe user involvement and combined care in a specialised diabetes and mental health outpatient clinic. Combined care is complexed and requires that healthcare providers are well-equipped to manage the complexity of delivering care for people with both conditions. The degree of combined care was linked with the healthcare providers' ability to involve users and their knowledge on the condition outside there are of expertise.Relevance to Clinical PracticeA peer-learning environment in combination with clinical guidelines and joint display could support healthcare providers in involving users in own care and when delivering care outside their area of expertise.Public contributionNo patient or public contribution. Due to the COVID-19 pandemic, the original user council withdraw their consent to participate due to health-related worries and anxiety concerning the pandemic. The user council consisted of three members diagnosed with diabetes and severe mental illness. They were invited to participate in physical meetings, phone or online meetings. Presenting findings from the study to the study participants were also hindered by the second lockdown. This influenced the possibility for data triangulation.

Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended. Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.

BACKGROUND Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. OBJECTIVE We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. METHODS This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). RESULTS The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. CONCLUSIONS The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention’s improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

WHAT IS KNOWN ON THE SUBJECT: Internationally, research and policy agendas recommend that family caregivers of service users in mental health care be involved in care and treatment, to support the service user's recovery process. Family caregivers of service users in mental health care are often highly burdened. There is a lack of research-based knowledge about the experiences of family caregivers of service users in forensic mental health care (FMHC) and their involvement in care and treatment.WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: This study indicates a persistent caregiver presence and/or caregiver advocacy in regard to care and treatment of the service user in FMHC. This study indicates that health care professionals (HCPs) might play a role in eliciting a persistent caregiver presence and/or caregiver advocacy.WHAT ARE THE IMPLICATIONS FOR PRACTICE: HCPs need to develop their collaborative skills and be more willing to listen to and understand caregivers' persistent presence and/or advocacy. HCPs need to be more skilled to understand caregivers' and families' living with the complexities of mental illness and offence. HCPs are encouraged to adjust the involvement of family caregivers in care and treatment to FMHC.ABSTRACT: Introduction There is a lack of research about experiences of family caregivers of service users in forensic mental health care (FMHC) and their involvement in care and treatment. Research shows that caregivers are burdened. Further knowledge is required, to provide a foundation for improving clinical practice. Aim To review research literature, to investigate existing knowledge about caregiver experiences and, secondly, caregivers' experiences of facilitators and barriers related to their involvement in care and treatment. Method Qualitative evidence synthesis undertaken in a thematic synthesis of thirteen peer-reviewed studies. Results The analysis identified three descriptive themes: violence against family; a great burden of responsibility; and difficult collaboration, together with an additional three analytical themes: bearing witness; persistent presence; and advocacy becomes necessary. Discussion Persistent caregiver presence and/or caregiver advocacy may be elicited by health care professionals' (HCPs') exclusion of caregivers from care and treatment. Caregivers' feelings of guilt in relation to the service user's offence may play an additional role in persistent presence and advocacy and, therefore, in HCPs' exclusion of them. Implications for Practice HCPs need to develop their collaboration with caregivers by their willingness to listen to caregivers to understand emotional complexities within families experiencing mental illness and offence.

People with schizophrenia and type 2 diabetes face complex challenges in daily life and the management of both illnesses is burdensome. This qualitative interview study aimed to explore perceptions and understandings of the day-to-day management of schizophrenia and type 2 diabetes. Fourteen semi-structured interviews were conducted between January 2020 and October 2021 in the participants' respective mental health clinics, in their homes or by phone. Thematic analysis led to four themes representing participants' self-management strategies and perceived challenges. The first theme showed that participants use self-learned strategies for managing schizophrenia. In contrast, they perceived type 2 diabetes self-management as governed by a set of rules and guidelines given by health professionals. The second theme showed that both psychotic and negative symptoms present challenges to diabetes management. Theme 3 illustrated that participants consider their type 2 diabetes to be a very serious illness. They worried about potential long-term consequences and expressed wishes and motivation to improve their lifestyle. The final theme showed that participants discuss challenges related to their schizophrenia with family and friends but not type 2 diabetes. In conclusion, this study highlights the importance of considering individual challenges and everyday routines when supporting this population. It underlines the need for future research to further explore the complexity of managing the illnesses and to understand the needs for treatment and support. People with schizophrenia and type 2 diabetes face complex challenges in daily life and the management of both illnesses is burdensome. This qualitative interview study aimed to explore perceptions and understandings of the day-to-day management of schizophrenia and type 2 diabetes. Fourteen semi-structured interviews were conducted between January 2020 and October 2021 in the participants' respective mental health clinics, in their homes or by phone. Thematic analysis led to four themes representing participants' self-management strategies and perceived challenges. The first theme showed that participants use self-learned strategies for managing schizophrenia. In contrast, they perceived type 2 diabetes self-management as governed by a set of rules and guidelines given by health professionals. The second theme showed that both psychotic and negative symptoms present challenges to diabetes management. Theme 3 illustrated that participants consider their type 2 diabetes to be a very serious illness. They worried about potential long-term consequences and expressed wishes and motivation to improve their lifestyle. The final theme showed that participants discuss challenges related to their schizophrenia with family and friends but not type 2 diabetes. In conclusion, this study highlights the importance of considering individual challenges and everyday routines when supporting this population. It underlines the need for future research to further explore the complexity of managing the illnesses and to understand the needs for treatment and support.

People with coexisting type 1 and 2 diabetes and mental illness have a higher mortality rate compared to the general population, among other reasons due to unregulated diabetes. One explanation might be the complexity of managing both conditions. In this interview study, we explored the accounts of delivered diabetes and mental health care of 16 individuals living with coexisting diabetes and mental illness in Denmark. A thematic analysis by Braun and Clarke was applied in the analysis. Some of the participants described the care for diabetes and mental illness to be inextricably linked to each other. Therefore, health care providers ought to focus and knowledge of both conditions as essential components in the care provided. The participants accounted for support needs in other settings beyond diabetes and mental health outpatient clinics, such as the family doctor, residential institutions, and community care. However, the inefficient collaboration between these health care settings is one of the barriers to supporting the participants' self-management.

Was ist zu diesem Thema bekannt? Guided Self-Determination (GSD) ist ursprünglich für die Zusammenarbeit in der Behandlung von Menschen mit der Diagnose Diabetes mellitus Typ 1 entwickelt worden. GSD hat sich auch in der Begleitung von Menschen mit anderen chronischen Erkrankungen als hilfreich erwiesen. Wie wird eine neue Perspektive eingebracht? Im Zentrum von GSD steht ein gemeinsamer und geleiteter Reflexionsprozess, in dem strukturiert anhand von Arbeitsblättern an individuellen und komplexen Problemstellungen gearbeitet wird – mit dem Ziel einer personenzentrierten, ressourcenorientierten, und realitätsnahen Lösung. Was sind die Auswirkungen für die Praxis? Menschen in komplexen Problemlagen, die durch eine Erkrankung mit langfristigem Verlauf ausgelöst oder beeinflusst sind, können mit GSD gemeinsam mit professionell Helfenden strukturiert, individuell und ergebnisorientiert ihre Situation reflektieren und zu ihren Bedürfnissen passende Lösungsmöglichkeiten entwickeln.

Im ersten Teil des Artikels wurde die Methode GSD beschrieben. In diesem zweiten Teil des Artikels wird anhand eines Fallbeispiels die Umsetzung in der Praxis dargestellt. Dieses erfolgt am Beispiel der Anwendung von zwei Arbeitsblättern zur Reflexion. Bei dem ersten Arbeitsblatt steht die Frage im Mittelpunkt, welche Phasen in Bezug auf die Erkrankung erlebt worden sind. Die Patient_innen werden gebeten, eine Zeitleiste auszufüllen. Beim zweiten Arbeitsblatt geht es um die Erfahrungen mit Therapieempfehlungen für das persönliche Alltagsleben.

Background Patients diagnosed with inflammatory bowel disease may be treated with biologics, depending on several medical and non-medical factors. This study investigated healthcare costs and production values of patients treated with biologics. Methods This national register study included patients diagnosed with Crohn’s disease (CD) and ulcerative colitis (UC) between 2003 and 2015, identified in the Danish National Patient Register (DNPR). Average annual healthcare costs and production values were compared for patients receiving biologic treatment or not, and for patients initiating biologic treatment within a year after diagnosis or at a later stage. Cost estimates and production values were based on charges, fees and average gross wages. Results Twenty-six point one percent CD patients and ten point seven percent of UC patients were treated with biologics at some point in the study period. Of these, 46.4 and 45.5 % of patients initiated biologic treatment within the first year after diagnosis. CD and UC patients treated with biologics had higher average annual healthcare costs after diagnosis compared to patients not treated with biologics. CD patients receiving biologics early had lower production values both ten years before and eight years after treatment initiation, compared to patients receiving treatment later. UC patients receiving biologics early had lower average annual production values the first year after treatment initiation compared to UC patients receiving treatment later. Conclusions CD and UC patients receiving biologic treatment had higher average annual healthcare costs and lower average annual production values, compared to patients not receiving biologic treatment. The main healthcare costs drivers were outpatient visit costs and admission costs.

Background: The choice of treatment for Crohn’s disease (CD) and ulcerative colitis (UC) depends among other factors, disease severity. Patients with moderate-to-severe disease should be prescribed biologic response modifiers (biologics), according to guidelines. This study aims to explore the treatment patterns of patients diagnosed with CD and UC between 2003 and 2015 that were treated with biologics in Denmark between the years 2003 and 2016. Methods: This national register study included patients diagnosed between 2003 and 2015, identified in the Danish National Patient Registry. Biologic therapies available during the study period were infliximab, adalimumab, vedolizumab and golimumab. The share of patients initiating and receiving biologic treatment in each year was estimated. Additionally, the time from IBD diagnosis to first biologic treatment and time between treatments was calculated. Results: Among 10,302 CD patients and 22,144 UC patients, 28.5% of CD patients and 11.3% of UC patients received treatment with biologics during the study period, with an increasing trend in the number of patients initiating treatment with biologics each year. About 46% of CD patients and 45% of UC patients received their first biologic treatment within the first year after IBD diagnosis. About 57–68% of CD and UC patients received treatment with their second line biologic within 2 months of the last treatment of their first line. Conclusions: The number of patients initiating biologic treatments after diagnosis increased throughout the study period. Most patients diagnosed with CD and UC are receiving biologic treatments relatively soon after their diagnosis.

Objective: There is little information on cost-of-illness among patients diagnosed with Crohn’s disease (CD) and ulcerative colitis (UC) in Denmark. The objective of this study was to estimate the average 5-year societal costs attributable to CD or UC patients in Denmark with incidence in 2003–2015, including costs related to health care, prescription medicine, home care and production loss. Materials and methods: A national register-based, cost-of-illness study was conducted using an incidence-based approach to estimate societal costs. Incident patients with CD or UC were identified in the National Patient Registry and matched with a non-IBD control from the general population on age and sex. Attributable costs were estimated applying a difference-in-difference approach, where the total costs among individuals in the control group were subtracted from the total costs among patients. Results: CD and UC incidence fluctuated but was approximately 14 and 31 per 100,000 person years, respectively. The average attributable costs were highest the first year after diagnosis, with costs equalling €12,919 per CD patient and €6,501 per UC patient. Hospital admission accounted for 36% in the CD population and 31% in the UC population, the first year after diagnosis. Production loss exceeded all other costs the third-year after diagnosis (CD population: 52%; UC population: 83%). Conclusions: We found that the societal costs attributable to incident CD and UC patients are substantial compared with the general population, primarily consisting of hospital admission costs and production loss. Appropriate treatment at the right time may be beneficial from a societal perspective.

The objective was to elicit patient preferences for medicine administration method in the management of acute agitation episodes among patients diagnosed with bipolar disorder or schizophrenia. The patients’ experiences of acute agitation episodes and their management of episodes were also explored. Data were collected via an anonymous, internet-based survey of residents in Denmark or Sweden with schizophrenia or bipolar disorder (October 2014 to December 2014). Inclusion criteria were having a diagnosis of schizophrenia or bipolar disorder, and being above 18 years of age. The questionnaire included questions about preferences for medication attributes, experiences with pharmacological treatment for agitation and involvement in treatment plans. A total of 237 diagnosed patients (61 with schizophrenia; 176 with bipolar disorder) completed the questionnaire. Agitation episodes were experienced by 90% of the respondents. In total, 83% of the respondents reported having received treatment with tablets. When patients were presented with the attributes of an inhalation method, respondents stated that the fast onset of action, low risk of adverse reactions and least invasive form of drug delivery were positive attributes of treatment with inhalation. Inhalation is a new delivery route for treatment of acute agitation in patients diagnosed with bipolar disorder or schizophrenia. Inhalation is the preferred treatment method for acute agitation among Danish and Swedish patients with bipolar disorder or schizophrenia.

Background Biologic response modifiers (biologics) has been introduced as potent drugs for the treatment of Crohn’s disease (CD) and ulcerative colitis (UC). Whether this has resulted in a reduction in the need for surgical treatment is controversial. This study aims to explore the surgery rates of patients diagnosed with CD and UC between 2003 and 2015 and correlate to those treated with biologics or not in Denmark with a follow-up until 2016. Methods This national register study included patients diagnosed between 2003 and 2015 and followed up until 2016, identified in the Danish National Patient Registry (NPR). Biologic therapies available in (parts of) the study period were infliximab, adalimumab, vedolizumab and golimumab. Surgery rates were identified through three types: bowel resections (code KJFB), total colectomies (code KJFH) and resections and excisions of the rectum (code KJGB). The share of patients undergoing surgery or initiating and receiving biologic treatment in each year was analysed. Additionally, patients undergoing surgery were stratified to receiving biological treatment in a period before the surgery or not and the time to first surgery was investigated. Results Among 10,302 CD patients and 22,144 UC patients, 2,328 CD patients and 2,128 UC patients underwent intestinal resection. Numbers were driven by the two first surgery codes (97% for CD and 93% for UC), and >1 resection was observed in 20% of the CD cases and more in the UC cases (40%), as expected due to reoperations. In the same period, 2,939 and 2,504 patients were treated with biologics for CD and UC, respectively, with an increase observed over the years. The vast majority were treated with an anti-TNF-α biologic, as vedolizumab was not approved in Denmark before 2015. We observed similar surgery rates of patients receiving biologics compared with those not treated with biologics. However, the time period from diagnosis to first intestinal surgery was observed to be longer for the patients treated with biologics (Figure1). Conclusion The number of patients undergoing intestinal resections or initiating biologic treatments after diagnosis increased throughout the study period for the full population. The risk of intestinal resections was similar in the group of patients who received biologicals compared with the group who did not, but the treatment seemed to postpone surgery in both diseases.

The cost burden of inflammatory bowel disease is significant 10 years before diagnosis, in addition to other diagnoses related to the digestive system in patients compared with the general population, as investigated using the Danish national registries from 2003 to 2015., Background The diagnostic delay in inflammatory bowel disease (IBD) is well known, yet the costs associated with diagnoses before IBD diagnosis have not yet been reported. This study explored societal costs and disease diagnoses 10 years before Crohn’s disease (CD) and ulcerative colitis (UC) diagnosis in Denmark. Methods This national register study included patients diagnosed between 2003 and 2015 identified in the Danish National Patient Registry (NPR) and controls who were individually matched on age and sex from the general population. Societal costs included health care services, prescription medicine, home care services, and labor productivity loss. Prediagnostic hospital contact occurring before CD or UC diagnosis was identified using the NPR. Average annual costs per individual were calculated before the patient’s first CD or UC diagnosis. A 1-sample t test was then applied to determine significance in differences between cases and controls. Results Among CD (n = 9019) and UC patients (n = 20,913) the average societal costs were higher throughout the entire 10-year period before the diagnosis date compared with the general population. The difference increased over time and equaled €404 for CD patients and €516 for UC patients 10 years before diagnosis and €3377 and €2960, respectively, in the year before diagnosis. Crohn’s disease and UC patients had significantly more diagnoses before their CD and UC diagnosis compared with the general population. Conclusions Compared with the general population, the societal costs and number of additional diagnoses among CD and UC patients were substantially higher in the 10-year period before diagnosis.

Background: The use of physical coercive measures, e.g. mechanical restraint (MR), in mental health care, is a major infringement on the psychiatric patient’s autonomy. MR can cause physical and mental harm but may be necessary to avoid putting an individual’s health at risk. The nursing staff is tasked with protecting the life and health of, not only the individual patient, but also other patients, and relatives. A situation can occur in which staff is obligated to use force, and occasionally MR, if a patient is very aggressive, violent, self-destructive, or suicidal. Although MR is legal, the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment concluded, in three reports from 2002, 2008, and 2014 that no medical justification exists for applying instruments of physical restraint to psychiatric patients for days, and that doing so amounts to ill treatment. Following, the Government in Denmark decided in 2014, that the number of MR should be halved before 2020. This decision lead to development, and implementation of an array of more or less, evidence based preventive initiatives. In some regions, the development has been positive, reducing the numbers of MR episodes, but we do not know which initiatives has created this development. Aim: To examine which MR preventive factors/initiatives reduces the number of MR episodes. Methods: This study is designed as a nationwide, longitudinal, cluster, cross-sectional survey of preventive initiatives implemented in psychiatric units and the corresponding numbers of coercive episodes. Questionnaires will be used to gather data on preventive initiatives from the units’ once a year, over a period of three years, and data on coercive episodes will be accessed from the national database on coercion. A linear mixed-method model will be used to estimate the longitudinal effect of implementing the specific preventive initiatives. Results: The only data collected at the time of the conference will be from 2016, so descriptive data will be presented, together with data on coercive episodes.

BACKGROUND We co-designed a mobile health application (mHealth app) – MindFrame - in partnership with individuals with schizophrenia and healthcare providers. The purpose of MindFrame is to empower patients to confidently manage everyday living when having been recently diagnosed with schizophrenia trough tracking of the mental health state, customized psychoeducation, medication adherence support, illness exacerbation alerts and delivery of time sensitive strategies for relapse prevention and self-management. OBJECTIVE This paper explores how young adults recently diagnosed with schizophrenia, used and perceived MindFrame as a tool to foster power in the daily management of their illness. METHODS From January to December 2016 patients from a first episode psychosis outpatient program in Denmark were invited to use MindFrame as part of their care. Along with MindFrame, they continued their usual care. They customized and used MindFrame based on their needs and preferences while assessing their mental health state on a daily basis. 27 patients used MindFrame and 13 subsequently evaluated it. The evaluation was qualitative and conducted using telephone interviews. Data were analysed using a hermeneutical approach. RESULTS The analysis showed that, for patients, MindFrame served to foster power in the everyday management of living with schizophrenia. When the app was used consistently for more than a month, and with the healthcare providers, it could provide the patients with the power to keep up their medication, to keep a step ahead of their illness and to get fast and timely help. This empowered them to stay on track with the illness, thus in control of it. Also, MindFrame could fuel the fear of restraint and illness exacerbation, thereby disempowering some from feeling certain and secure. CONCLUSIONS The findings demonstrate that MindFrame has the ability to empower young adults to manage their illness in the context of their daily lives. This contributes toward the potential of putting healthcare into the patient’s pocket. The disempowering aspect of MindFrame accentuates a need for further research to clarify the limitations of mHealth apps for patient empowerment in young adults with schizophrenia.

Introduction: The incidence of head and neck cancers has increased markedly over the last decade. A Danish study of the costs of head and neck cancers has not been undertaken. Such studies have again become relevant due to the development of the HPV vaccines, as some cases are attributable to high-risk HPV 16 or 18. The objective of study was to estimate the incidence of head and neck cancers and their health care costs. Methods: Data on incidence and health care use related to head and neck cancer were obtained from Danish health care registers. New cancer patients were identified in the Danish National Cancer Register. Resource use per year in the hospital sector was estimated using data from the National Patient Register applying charges as cost estimates. Health care consumption by cancer patients was compared with that by an age- and sex-matched cohort without cancer. Results: We found that nearly 1000 new cases of oral cavity, oropharyngeal, hypopharyngeal and laryngeal cancer are diagnosed annually. In total the cost of these cancers to the Danish hospital sector constituted 31.6 million Euros per year, with the majority of costs (74%) occurring in men. The total costs associated with HPV16/18-related head and neck cancers were estimated to be 6.1 million Euros per year. Conclusion: This study provides the first Danish estimates of the costs associated with non-cervical and non-genital HPV-related cancers based on very reliable, individual-based data. It is expected that the current HPV vaccination programme will reduce this burden.

Background Agitation episodes are common among patients with schizophrenia or bipolar disorder. Oral and intramuscular administration methods are commonly used in pharmacological treatment of acute agitation. Recently, an innovative inhalation product with loxapine(Adasuve®)has become available for treatment of acute agitation episodes associated with bipolar disorder or schizophrenia. The objective for the present study was to investigate the impact of the pharmacological treatment’s administration methods on the health-related quality of life (HRQoL) in patients with bipolar disorder or schizophrenia in Denmark and Sweden using a time trade-off (TTO) approach. Methods The TTO methodology was used to examine the HRQoL impact of administration method of pharmacological treatment of acute agitation. Data were collected via an internet-based survey, using an existing panel of respondents with schizophrenia or bipolar disorder. Results Respondents considered living with schizophrenia/ bipolar disorder, having one yearly agitation episode treated with inhaler better than living with the same conditions and receiving treatment with tablet or injection. The utility value was 0.762 for inhalable treatment, 0.707 for injection and 0.734 for tablet treatment. Conclusions Patients’ preference for treatment delivery options showed that inhalation was associated with a significant utility gain when compared to injection or tablets. Inhalable loxapine may be a new tool for control of agitation episodes for strengthening the patient provider alliance when taking patient’s preference for delivery method into consideration.

Smartphone technology is being increasingly viewed as key to engaging young adults with schizophrenia in their own mental health care. In an attempt to use smartphones as an engagement tool, we conducted a participatory design process, where young adults with schizophrenia (n = 4), healthcare providers (n = 7), software designers (n = 3), graphic designer (n = 1), graphic recorder (n = 1), and team leader (n = 1) co-designed a smartphone application for use in early phase schizophrenia care. This paper reports the co-design process. Based on a variety of written data-sources, the paper describes if, and how, participatory design can help construct a physical and relational environment that enables young adults with schizophrenia to become active participants in the design of a more participatory mental health practice. Guided by Etienne Wenger's construct of Community of Practice, three major categories of characteristics and construction of a physical and relational environment supporting and inspiring participation and engagement were identified: (i) a pre-narrative about a community of practice, (ii) the room for design is a community of practice and (iii) the community of practice as a practice of special qualities. It is concluded that participatory design can support and inspire participation and engagement in the development of mental health care with young adults with schizophrenia, given that the environment in which participatory design unfolds is transparent, flexible, secure and informal.

Objective: The purpose of this study was to assess the consequences of a national immunization program with HPV vaccine for both boys and girls in Denmark, including the prophylactic effects on all potentially vaccine preventable HPV-associated diseases in male and female. Methods: The study focussed on the quadrivalent vaccine which protects against HPV type 6, 11, 16 and 18, and the vaccine's protection against genital warts, cervical intraepithelial neoplasia, cervical cancer, anogenital cancer (anal, penile, vaginal and vulvar cancer) and head and neck cancer (oral cavity, oropharyngeal, hypopharyngeal and laryngeal cancer) were included in the analyses. In general, the analysis was performed in two phases. First, an agent-based transmission model that described the HPV transmission without and with HPV vaccination was applied. Second, an analysis of the incremental costs and effects was performed. The model did not include naturally-acquired immunity to HPV in the simulations. Results: In the base case result (i.e. vaccination of girls only, 85% vaccination rate, private market price at 123 per dose ex. VAT) an ICER of 3583 /QALY (3-dose regime) is estimated when all HPV-related diseases are taken into account. Vaccination of girls & boys vs. vaccination of girls only an ICER of 28,031 /QALY (2-dose regime) and 41,636 /QALY (3-dose regime) is estimated. Conclusions: Extension of the current HPV programme in Denmark to include boys and girls is a cost effective preventive intervention that would lead to a faster prevention of cancers, cancer precursors and genital warts in men and women.

Background Besides being a causative agent for genital warts and cervical cancer, human papillomavirus (HPV) contributes to 40-85% of cases of anal, penile, vaginal and vulvar cancer and precancerous lesions. HPV types 16 & 18 in particular contribute to 74-93% of these cases. Overall the number of new cases of these four cancers may be relatively high implying notable health care cost to society. The aim of this study was to estimate the incidence and the health care sector costs of anal, penile, vaginal and vulvar cancer. Methods New anogenital cancer patients were identified from the Danish National Cancer Register using ICD-10 diagnosis codes. Resource use in the health care sector was estimated for the year prior to diagnosis, and for the first, second and third years after diagnosis. Hospital resource use was defined in terms of registered hospital contacts, using DRG (Diagnosis Related Groups) and DAGS (Danish Outpatient Groups System) charges as cost estimates for inpatient and outpatient contacts, respectively. Health care consumption by cancer patients diagnosed in 2004–2007 was compared with that by an age- and sex-matched cohort without cancer. Hospital costs attributable to four anogenital cancers were estimated using regression analysis. Results The annual incidence of anal cancer in Denmark is 1.9 per 100,000 persons. The corresponding incidence rates for penile, vaginal and vulvar cancer are 1.7, 0.9 and 3.6 per 100,000 males/females, respectively. The total number of new cases of these four cancers in Denmark is about 270 per year. In comparison, the total number of new cases cervical cancer is around 390 per year. The total cost of anogenital cancer to the hospital sector was estimated to be 7.6 million Euros per year. Costs associated with anal and vulvar cancer constituted the majority of the costs. Conclusions Anogenital cancer incurs considerable costs to the Danish hospital sector. It is expected that the current HPV vaccination program will markedly reduce this burden.

BACKGROUND:This study sought to determine the incidence and the burden of severe diarrheal disease in Denmark with emphasis on rotavirus (RV) disease.METHODS:This study was designed as a national prospective disease surveillance of children RESULTS:A total of 3100 hospitalizations annually among Danish children CONCLUSION:In conclusion, we present national disease burden data on severe cases of gastroenteritis and specifically RV-associated disease and demonstrate that RV is indeed ubiquitous in the population and can be considered a major health burden among young Danish children.