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Background General practitioners (GPs) diagnose and manage a majority of headache patients seeking health care. With the aim to understand the potential for clinical improvement and educational needs, we performed a study to investigate Norwegian GPs knowledge about headache and its clinical management. Methods We invited GPs from a random sample of 130 Norwegian continuous medical education (CME) groups to respond to an anonymous questionnaire survey. Results 367 GPs responded to the survey (73% of invited CME groups, 7.6% of all GPs in Norway). Mean age was 46 (SD 11) years, with an average of 18 (SD 10) years of clinical experience. In general the national treatment recommendations were followed, while the International Classification of Headache Disorders and other international guidelines were rarely used. Overall, 80% (n = 292) of the GPs suggested adequate prophylactic medication for frequent episodic migraine, while 28% (n = 101) suggested adequate prophylactic medication for chronic tension-type headache (CTTH). Half (52%, n = 191)) of the respondents were aware that different types of acute headache medication can lead to medication-overuse headache (MOH), and 59% (n = 217) knew that prophylactic headache medication does not lead to MOH. GPs often used MRI in the diagnostic work-up. GPs reported that lack of good treatment options was a main barrier to more optimized treatment of headache patients. Conclusion The knowledge of management of CTTH and MOH was moderate compared to migraine among Norwegian GPs.

BackgroundDuring the first wave of COVID-19 pandemic, hospitals were forced to cancel or postpone non-COVID-19 care. With new outbreaks emerging, hospitals are now figuring out how to balance preparedness for future COVID-19 waves with their elective and regular services. This report discusses how four hospital systems deal with these dual responsibilities in China, Norway and the UK.ReflectionsBased on the experiences and combined reflections of hospital executives, we have formulated five strategic and leadership lessons for hospitals as they manage these dual responsibilities. (1) Redesign organisation to separate COVID-19 and non-COVID-19 services both within and across hospitals. (2) Expand virtual care strategies to improve access. (3) Use data-driven models to allocate resources across COVID-19 and non-COVID-19 units. (4) Invest in programmes to promote frontline staff well-being. (5) Secure financial support to continue to deliver on the dual responsibilities.ConclusionThe COVID-19 pandemic gives rise to leadership challenges that have fuelled organisational change and new approaches to healthcare delivery. Leading hospitals during the pandemic is a balancing act—providing care for both patients with COVID-19 and non-COVID-19, while at the same time preparing for the next waves of the pandemic.

All Norwegian municipalities have a statutory duty to employ a District Medical Officer as their medical advisor, but they are free to decide where this role should be placed in the municipal hierarchy. The position's contracted working hours, seniority and job content vary between municipalities. We conducted a survey to increase our understanding of how District Medical Officers see their own role.Data were collected by conducting focus group interviews with fifteen District Medical Officers from various municipalities and counties. The data were subjected to thematic qualitative analysis involving systematic text condensation.All the District Medical Officers had advisory roles and many reported limited access to formal decision-making arenas. They typically saw their role as poorly defined and felt a sense of invisibility, but this perception was combined with considerable autonomy. Most of the District Medical Officers reported that they felt caught between demands for advice at two different levels: clinical advice relating to individual cases and general public health advice to local authorities. This sense of being squeezed was more pronounced among District Medical Officers in large municipalities than in small municipalities. Organisational contexts and managerial expectations played a part in creating greater demand for clinical advice. This curbed the development of a public health identity and role.District Medical Officers have a hybrid role as multi-level advisors, and this requires them to adopt several identities. In order to bolster the public health aspect, their role must be made clearer by introducing appropriate expectations and organisational contexts within the municipality.

BackgroundA leadership development programme (The Health Leadership School) was launched in 2018 for junior doctors and medical students in Norway.ObjectiveTo study participants’ experiences and self-assessed learning outcomes, and if there were any differences in outcome among participants who met face-to-face versus and those who had to complete half of the programme in a virtual classroom due to the COVID-19 pandemic.MethodsParticipants who completed The Health Leadership School in 2018–2020 were invited to respond to a web-based questionnaire.ResultsA total of 33 (83%) out of 40 participants responded. The majority of respondents (97%) somewhat agreed or strongly agreed that they had gained knowledge and skills they did not learn in medical school. Respondents reported a high learning outcome for most competency domains, and there was no difference in outcome when comparing scores of those who met face-to-face versus and those who had to complete half of the programme in a virtual classroom. Among participants who participated in virtual classroom sessions due to the COVID-19 pandemic, the majority agreed that the programme could be run as a combination of face-to-face and virtual sessions.ConclusionThis brief report suggests that leadership development programmes for junior doctors and medical students can be run in-part using virtual classroom sessions, but that face-to-face sessions are important to foster relational and teamwork skills.

External inspections constitute a key element of healthcare regulation. Improved quality of care is one of the important goals of inspections but the mechanisms of how inspections might contribute to quality improvement are poorly understood. Drawing on interviews with healthcare professionals and managers and health record data from inspected organizations, we used a realist evaluation approach to explore how twelve inspections of healthcare providers in x= Norway influenced quality improvement. We found that for inspections to contribute to quality improvement, there must be contextual structures present supporting accountability and engaging staff in improvement work. When such structures are present, inspections can contribute to improvement by creating awareness of gaps between desired and current practices, which leads to readiness for change and stimulates intra-organizational reasoning around quality improvement. We discuss our findings using the theory of de- and recoupling, noting how regulators can identify decoupling between intended goals, management systems, practices, and patient outcomes. We further argue that regulators can contribute to a recoupling between these levels by having the capacity to track the providers' clinical performance over time. This will hold the organization accountable for implementing improvement measures and evaluate the effects of the measures on quality of care. publishedVersion

BAKGRUNN Alle kommuner er lovpålagt å ha en kommunelege som medisinskfaglig rådgiver, men bestemmer selv organiseringen av rollen. Stillingsstørrelse, plassering og innhold varierer mellom ulike kommuner. Vi gjorde en studie for å få økt kunnskap om hvordan kommuneoverleger opplever sin egen rolle. MATERIALE OG METODE Det ble samlet data fra fokusgruppeintervjuer med 15 kommuneoverleger fra ulike kommuner og fylker. Dataene ble gjenstand for tematisk kvalitativ analyse med bruk av systematisk tekstkondensering. RESULTATER Alle kommuneoverlegene var i rådgiverfunksjoner, og mange oppga liten tilgang på formelle beslutningsarenaer. Deres opplevelse var preget av rolleuklarhet og usynlighet, men også stor grad av autonomi. De fleste kommuneoverlegene ga uttrykk for å stå i skvis mellom behovene for rådgivning på to ulike nivåer: klinisk rådgivning i enkeltsaker og overordnet samfunnsmedisinsk rådgivning til ledelsen i kommunen. Opplevelsen var tydeligere hos kommuneoverleger i større kommuner enn i små. Organisatorisk ramme og forventninger fra ledelsen bidro til overvekt av etterspørsel etter klinisk rådgivning. Dette begrenset utviklingen av en samfunnsmedisinsk identitet og rolleutøvelse. FORTOLKNING Kommuneoverleger står i en hybridrolle som rådgivere på ulike nivåer som krever ulike identiteter. For å styrke den samfunnsmedisinske utøvelsen må rollen tydeliggjøres gjennom organisatoriske rammer og forventninger i kommunen.

Background Huntington’s disease (HD) is a progressive genetic neurodegenerative disease accompanied by mental and neurocognitive disabilities, which requires long-term and comprehensive treatment and care. Information on the health and economic burden of HD is scarce, but essential for conducting health economic analyses, in light of the prospect of new therapies for HD. In this study, we aim to identify values for Health-Related Quality of Life (HRQoL), describe service utilization and costs, and their associations with clinical and socio-demographic variables across all phases of HD. Methods A cross-sectional study including 86 patients across all phases of HD. Values of HRQoL were calculated based on EQ-5D-3L index scores. Additionally, health care and societal costs were estimated based on service utilization collected using the Client Service Receipt Inventory (CSRI) and data from the patients’ interviews. Total societal costs included costs of primary and secondary health care services, informal care and productivity loss of the patients. Multiple regression analyses were used to investigate associations between socio-demographic and clinical variables on HRQoL and costs. Results HRQoL values declined, while total costs increased across disease severity. Total six-month healthcare costs and total societal costs were € 18,538 and € 66,789 respectively. Healthcare and societal costs doubled from early to middle phase, and tripled from middle to advanced disease phase. Main six-month cost components for the three disease phases were informal care costs (€ 30,605) accounting for approximately half the total societal costs, and costs due to production loss (€ 18,907) being slightly higher than the total healthcare costs. Disease severity and gender were found to have the strongest effect on both values of HRQoL and costs. Conclusions Reported values of HRQoL and costs including costs for production loss may be used in modelling the cost-effectiveness of treatment for HD. Our results highlight the crucial role the informal caregivers play in the care provided to HD patients in all disease phases. Future research should focus on the estimation of productivity loss among informal caregivers.

Background: Studies have assessed the therapeutic effect of music, dance, and rhythmic auditory cueing for patients with Huntington’s disease (HD). However, the synthesis of evidence in support of their positive impact on symptoms is lacking. Objective: We conducted a systematic literature review to evaluate the potential benefits of music, dance, and rhythm on the cognitive, psychiatric and motor function in patients with HD. Methods: Two- and three-keyword searches and a manual search identified medical literature published from 1999 through 2019. We considered literature that assessed outcomes of art-based rehabilitation programs or individual modalities for persons with early, middle, or advanced HD. Structured analysis was conducted using data entry tables with categories for patient health status, art methods, and outcomes. Results: Seven articles and six abstracts met eligibility criteria, of which nine evaluated art-based rehabilitation programs. Studies mainly assessed cognitive, psychiatric, and motor functions through music, dance, or rhythm modalities. Although results were conflicting, in summary improvements to motor function were dependent on disease severity and more responsive to art therapy programs than rhythm-motor synchronization. Benefits to global cognition that resulted from rhythmic training correlated with microstructural changes. Qualitative data verified a positive impact on language production, chorea, behavior, and quality of life. Conclusions: Our review has shown a potential benefit of music, dance, and rhythm for patients with HD, which is particularly important for a disease that has no cure. Art forms seemed to affect cognitive, psychiatric, motor, psychosocial, and neuroanatomical domains. However, evidence is preliminary, warranting further investigation to establish the foundation for this field.

Background Pain is prevalent in myotonic dystrophy 1 (DM1). This study investigated whether CTG repeat size, disease duration, BMI and motor and psychological function were related to pain in adult patients with DM1, and if there were gender differences regarding intensity and location of pain. Method Cross-sectional design. Pain was investigated in 50 genetically confirmed DM1 patients by combining clinical assessment and self-reports of pain intensity and locations. Pain scoring results were related to CTG size, disease duration, muscle strength, walking capacity measured by 6-min walk test, activity of daily life by Katz ADL Index, respiratory function by Forced Vital Capacity and BMI. In addition, the degree of reported pain was related to Quality of life measured by WHOQOL-BREF; fatigue was measured by Fatigue severity scale; psychological functions were measured by Beck Depression Inventory, Beck Anxiety Inventory, IQ and Autism spectrum Quotient. Results Pain was reported in 84% of the patients and was significantly correlated with CTG size (r = 0.28 p = 0.050), disease duration (r = 0.38 p = 0.007), quality of life (r = − 0.37 p = 0.009), fatigue (r = 0.33 p = 0.02) and forced vital capacity (r = − 0.51, p = 0.005). Significant gender differences, with higher scores for females, were documented. In male subjects the number of pain locations was significantly correlated with quality of life and the autism quotient. In females, pain intensity was significantly correlated with activity, respiratory function and BMI. Conclusions Pain in DM1 was prevalent, with a strong association to lung function and other aspects of the disease. Significant gender differences were present for pain intensity and number of pain locations. How pain was related to other symptoms differed between male and female subjects. Our findings highlight the importance of assessments of pain in DM1 patients.

Health systems invest significant resources in leadership development for physicians and other health professionals. Competent leadership is considered vital for maintaining and improving quality and patient safety. We carried out this systematic review to synthesise new empirical evidence regarding medical leadership development programme factors which are associated with outcomes at the clinical and organisational levels. Using Ovid MEDLINE, we conducted a database search using both free text and Medical Subject Headings. We then conducted an extensive hand-search of references and of citations in known healthcare leadership development reviews. We applied the Medical Education Research Study Quality Indicator (MERSQI) and the Joanna Briggs Institute (JBI) Critical Appraisal Tool to determine study reliability, and synthesised results using a meta-aggregation approach. 117 studies were included in this systematic review. 28 studies met criteria for higher reliability studies. The median critical appraisal score according to the MERSQI was 8.5/18 and the median critical appraisal score according to the JBI was 3/10. There were recurring causes of low study quality scores related to study design, data analysis and reporting. There was considerable heterogeneity in intervention design and evaluation design. Programmes with internal or mixed faculty were significantly more likely to report organisational outcomes than programmes with external faculty only (p=0.049). Project work and mentoring increased the likelihood of organisational outcomes. No leadership development content area was particularly associated with organisational outcomes. In leadership development programmes in healthcare, external faculty should be used to supplement in-house faculty and not be a replacement for in-house expertise. To facilitate organisational outcomes, interventions should include project work and mentoring. Educational methods appear to be more important for organisational outcomes than specific curriculum content. Improving evaluation design will allow educators and evaluators to more effectively understand factors which are reliably associated with organisational outcomes of leadership development.

Background: Myotonic Dystrophy type 1 (DM1) is an inherited neuromuscular disorder affecting multiple organs. There is an increasing awareness of chronic pain in DM1. In this cross-sectional study, we investigated symptoms of neuropathic pain and small and large fiber neuropathy in the adult form of DM1. We also studied if neuropathy was related to the number of CTG repeats, disease duration and other clinical DM1 symptoms, and investigated if skin biopsy tests for small fiber neuropathy differed in the DM1 group compared to reference values from healthy controls.Methods: 20 genetically verified DM1 adult patients were included in the study. Pain descriptions, neurologic examination and objective investigations of the peripheral nerve system by quantitative sensory testing, skin biopsies and neurography were conducted. Statistical analyses of group differences and frequencies were performed.Results: Six patients (30%) out of 20 patients with DM1 described neuropathic pain, and three of these had objective findings on both small and large fiber neuropathy, as well as clinically sensory findings. Together, large and/or small fibre neuropathy is present in 50% of the patients with DM1. The intra epidermal nerve fiber density was significantly lower (p= d = 1.2) in the 20 patients with DM1 (mean 8.16, SD: 2.28) compared to a reference group (N = 106, mean 12.43, SD: 4.59). Patients with large fiber neuropathy had significantly lower muscle strength (p = 0.01, Cohen`s d = 1.6, mean difference 0.4, CI: 0.7 - 0.1) than patients without large fiber neuropathy.Conclusion: Symptoms of neuropathic pain was more frequent in patients with DM1 compared to the general population. Intra epidermal nerve fiber density was significantly lower in the DM1 group than in a sample of healthy controls. Neuropathy may be a mechanism of pain in DM1.

Background: The literature offers discrepant findings regarding age at death in individuals with Huntington disease (HD). Objective: To study the age at death and causes of death in males and females with a diagnosis of HD in Norway. Methods: Registry study of deaths in 1986–2015 using data from two national registries: the Norwegian Cause of Death Registry (NCDR) and the registry of the Centre for Rare Disorders (CRD), Oslo University Hospital. Results: Mean age at death for individuals with HD was found to be 63.9 years (NCDR) and 61.7 years (CRD), compared to a mean of 76.9 years in the general population (NCDR). There were no significant gender differences for age at death in individuals with HD. The significant increase in age at death within the general population from 1986 to 2015 was not observed in individuals with HD. In 73.5% of individuals with HD, the underlying cause of death was HD, followed by cardiovascular diseases, cancer and respiratory diseases. The most common immediate cause of death was respiratory diseases (44.2%). Suicide was a more common cause of death in the population with HD (2.3%) compared to the general population (1.3%). Conclusion: The age at death of individuals with HD was stable over a period of 30 years and 13.3 years lower than in the general population. Longer life expectancy for females from the general population was not found in females with HD. Suicide was more common among individuals with HD compared to the general population.

Martin Luther King Jr, in the midst of the civil rights movement, referred to the ongoing protests by noting, ‘It would be fatal for the nation to overlook the urgency of the moment’.1 Broaden the context to the entire world as it faces and responds to the COVID-19 pandemic, and his words resonate today. The healthcare system and society more broadly are facing a situation with little precedent in its pace, health and economic impact, global reach and the societal distress it causes. The pandemic has escalated at breathtaking speed, leaving healthcare organisations and professionals struggling to plan, respond and cope. On 27th February 2020, the Johns Hopkins University Centre for Systems Sciences and Engineering reported 82 700 cases worldwide, most of these in China; just over 1 month later, on 1st April 2020, that number was exceeded by cases in Italy (105 792), Spain (102 136) and the USA (189 633), while the global figure stood at 873 767.2 On the same date and time, deaths worldwide numbered 43 288, with the Imperial College COVID-19 response team estimating that unmitigated, the pandemic could lead to …

Background Physical activity is associated with positive health effects, but individuals with neuromuscular disease (NMD) may experience constraints being physically active. There is a gap in the literature on the activity level of people with NMDs, and therefore we did a study to determine the physical activity level in people with Limb-Girdle muscular dystrophy (LGMD) and Charcot-Marie-Tooth disease (CMT). Methods This study used a cross-sectional design to obtain self-reported physical activity and sitting time among individuals with LGMD and CMT who were recruited from the Norwegian registry for hereditary and congenital neuromuscular diseases. Results A total of 127 respondents who filled out questionnaires about either physical activity or sitting time were included in the analysis. Seventy (55.1%) had a diagnosis of CMT and 57 (44.9%) had a diagnosis of LGMD. Seventy-three (57.5%) respondents were female and 54 (42.5%) were male. Among the 108 respondents with available physical activity data, 44.4% reported being physically inactive. Among the 109 respondents with available sitting time data, the average sitting time was 8.6 h. Longer sitting time was associated with higher physical inactivity. Conclusion Among people with LGMD and CMT in our study, 55.6% reported being physically active. Respondents with LGMD and CMT reported longer sitting time and less physical activity compared with healthy respondents in other studies. Further research should explore variables and measures that can promote physical activity among people with neuromuscular conditions.

ObjectiveInspections and other forms of external assessment may contribute to positive changes in the health services, but the mechanisms of such change remain unclear. We did a study to explore how external inspections may foster clinical improvement in hospitals.DesignFocus group study.SettingStatutory inspections of sepsis treatment in hospital emergency departments in Norway.ParticipantsClinicians, managers and inspection teams involved with the inspections of sepsis treatment in emergency departments at four different hospitals. Twelve focus group interviews were carried out, with a total of 47 participants.ResultsThree themes emerged as central for understanding how the inspections could contribute to clinical improvement in the emergency departments: (1) increasing awareness about the need to improve the quality of care by providing data on clinical performance, (2) building acceptance for improvement through professional credibility and focus on clinical practice, and (3) fostering leadership commitment.ConclusionOur findings suggest that the inspections have the potential to enhance hospital management and staff’s understanding of complicated care processes and help strengthen the organisational commitment to bring about systemic quality improvements.

Background Early recognition of sepsis is critical for timely initiation of treatment. The first objective of this study was to assess the timeliness of diagnostic procedures for recognizing sepsis in emergency departments. We define diagnostic procedures as tests used to help diagnose the condition of patients. The second objective was to estimate associations between diagnostic procedures and time to antibiotic treatment, and to estimate associations between time to antibiotic treatment and mortality. Methods This observational study from 24 emergency departments in Norway included 1559 patients with infection and at least two systemic inflammatory response syndrome criteria. We estimated associations using linear and logistic regression analyses. Results Of the study patients, 72.9% (CI 70.7–75.1) had documented triage within 15 minutes of presentation to the emergency departments, 44.9% (42.4–47.4) were examined by a physician in accordance with the triage priority, 44.4% (41.4–46.9) were adequately observed through continual monitoring of signs while in the emergency department, and 25.4% (23.2–27.7) received antibiotics within 1 hour. Delay or non-completion of these key diagnostic procedures predicted a delay of more than 2.5 hours to antibiotic treatment. Patients who received antibiotics within 1 hour had an observed 30-day all-cause mortality of 13.6% (10.1–17.1), in the timespan 2 to 3 hours after admission 5.9% (2.8–9.1), and 4 hours or later after admission 10.5% (5.7–15.3). Conclusions Key procedures for recognizing sepsis were delayed or not completed in a substantial proportion of patients admitted to the emergency department with sepsis. Delay or non-completion of key diagnostic procedures was associated with prolonged time to treatment with antibiotics. This suggests a need for systematic improvement in the initial management of patients admitted to emergency departments with sepsis. Copyright: © 2020 Husabø et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis and respiratory failure, with a life expectancy of 2-4 years. In order to better understand how MND is managed in the community, we conducted a qualitative study to explore the challenges healthcare professionals encounter when managing MND in primary healthcare. Based on data from 15 semi-structured interviews with primary healthcare professionals in Norway, we found that MND is viewed as a condition that requires exceptional effort and detailed planning. Healthcare professionals reported five main challenges in managing MND in primary healthcare: (i) building relationships with those giving and receiving care in the home; (ii) preventing caregiver burnout and breakdown; (iii) providing tailored care; (iv) ensuring good working conditions in patients' homes; and (v) recruiting and retaining qualified nursing assistants. Healthcare professionals reported needing working conditions that allow them to tailor their approach to the personal, emotional and existential nature of care preferences of those living with MND. However, people with MND and their families were sometimes perceived by healthcare professionals to prefer a strictly task-focused relationship with care providers. Such relationships limited the healthcare professionals' control over the MND trajectory and their capacity to prevent family caregiver burnout and breakdown. Adequate resources, along with training and support of nursing assistants, may increase the continuity of nursing assistants. Responsiveness to patient and family needs may enhance collaboration and promote tailored primary care and support for patients with MND and their families.

Background In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18–24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons’ hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home. Methods In this qualitative study, we interviewed 16 mothers of boys or men with hemophilia A or B. Data were collected via semistructured interviews and analyzed using an inductive thematic analytical approach. Results Mothers experienced both practical and emotional challenges in relation to their sons' treatment, and repeated venipuncture was especially difficult emotionally. Parents preferred home treatment to hospital treatment because it was less time-consuming, less disruptive to family life, and provided a greater sense of control. Encountering healthcare professionals who were unfamiliar with hemophilia was a second major stress factor, especially when parents felt that health professionals lacked competence and were unwilling to seek advice. Conclusion While home treatment for hemophilia enables freedom, flexibility, and autonomy for the boys as well as for the family, mothers may experience treatment of hemophilia as a burden. Health professionals should provide tailored practical and emotional support to parents by probing into their experiences with treating their sons' hemophilia.

Background: Little is known about the organization of clinical services for Huntington’s disease (HD). Objective: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. Methods: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study. Results: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50–199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD. Conclusions: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care. This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License.

Little is known about the experiences of women with Fabry disease. The aim of this study was to explore women's experiences of being heterozygous for Fabry disease. We used an explorative qualitative study design and selected ten Norwegian women who were known heterozygous for Fabry disease to participate. We conducted in-depth semi-structured interviews and analyzed the interviews using inductive thematic analysis. We found that learning about one's heterozygous status may be devastating for some. However, for most of the participants, heterozygous status, as well as doctors' acceptance of symptoms in women heterozygous for Fabry disease, provided an explanation and relief. Although many women did not consider themselves ill, they wished to be acknowledged as more than "just carriers." The participants were grateful for enzyme replacement therapy, although it had its burdens regarding time, planning, and absences from school or work. Women with Fabry disease felt that the lack of knowledge among healthcare professionals about Fabry disease was frustrating and worrisome. These findings suggest that healthcare professionals should acknowledge the different ways women react to their diagnosis, and be aware of the personal costs of receiving treatment.

“Structural violence is silent, it does not show—it is essentially static, it is the tranquil waters.”—Johan Galtung1 The sinking of RMS Titanic on 15 April 1912 has taught us some important lessons about leadership, hubris, safety culture and the importance of accounting for the parts of the iceberg we do not see. Two-thirds of the passengers did not survive the tragic incident, and famously, social class and sex were important determinants of passenger’s chances of surviving.2 There was more than one iceberg at play. What are the icebergs we should be more aware today of when reflecting on leadership challenges and inequalities in the health services and in health? One challenge that has long hidden in plain sight is the need to better meet the needs of people disadvantaged by race, gender, class or other sources of inequality. In a modern society, interactions with the healthcare system are not optional: people are literally born interacting with it. The system, including hospitals, public health, primary care and community services, is meant to serve all citizens, without regard to gender, social or ethnic background and race. Nevertheless, social determinants have a huge impact on disease burden and mortality.3 How well do our systems address health disparities? How well do they adapt to the population’s diversity in needs, preferences, health literacy and service utilisation? How can services better target vulnerable groups and those who experience barriers to access? Further, in every country, health and care systems are major employers: to what extent …

ObjectiveTo evaluate the effects of external inspections on (1) hospital emergency departments’ clinical processes for detecting and treating sepsis and (2) length of hospital stay and 30-day mortality.DesignIncomplete cluster-randomised stepped-wedge design using data from patient records and patient registries. We compared care processes and patient outcomes before and after the intervention using regression analysis.SettingNationwide inspections of sepsis care in emergency departments in Norwegian hospitals.Participants7407 patients presenting to hospital emergency departments with sepsis.InterventionExternal inspections of sepsis detection and treatment led by a public supervisory institution.Main outcome measuresProcess measures for sepsis diagnostics and treatment, length of hospital stay and 30-day all-cause mortality.ResultsAfter the inspections, there were significant improvements in the proportions of patients examined by a physician within the time frame set in triage (OR 1.28, 95% CI 1.07 to 1.53), undergoing a complete set of vital measurements within 1 hour (OR 1.78, 95% CI 1.10 to 2.87), having lactate measured within 1 hour (OR 2.75, 95% CI 1.83 to 4.15), having an adequate observation regimen (OR 2.20, 95% CI 1.51 to 3.20) and receiving antibiotics within 1 hour (OR 2.16, 95% CI 1.83 to 2.55). There was also significant reduction in mortality and length of stay, but these findings were no longer significant when controlling for time.ConclusionsExternal inspections were associated with improvement of sepsis detection and treatment. These findings suggest that policy-makers and regulatory agencies should prioritise assessing the effects of their inspections and pay attention to the mechanisms by which the inspections might contribute to improve care for patients.Trial registrationNCT02747121.

ObjectivesExternal inspections are widely used to improve the quality of care. The effects of inspections remain unclear and little is known about how they may work. We conducted a narrative synthesis of research literature to identify mediators of change in healthcare organisations subject to external inspections.MethodsWe performed a literature search (1980–January 2020) to identify empirical studies addressing change in healthcare organisations subject to external inspection. Guided by the Consolidated Framework for Implementation Research, we performed a narrative synthesis to identify mediators of change.ResultsWe included 95 studies. Accreditation was the most frequent type of inspection (n=68), followed by statutory inspections (n=19), and external peer review (n=9). Our findings suggest that the regulatory context in which the inspections take place affect how they are acted on by those being inspected. The way inspections are conducted seem to be critical for how the inspection findings are perceived and followed up. Inspections can engage and involve staff, facilitate leader engagement, improve communication and enable the creation of new networks for reflection on clinical practice. Inspections can contribute to creating an awareness of the inspected organisation’s current practice and performance gaps, and a commitment to change. Moreover, they can contribute to facilitating the planning and implementation of change, as well as self-evaluation and the use of data to evaluate performance.ConclusionsExternal inspections can affect different mediators of organisational change. The way and to what extent they do depend on a range of factors related to the outer setting, the way inspections are conducted and how they are perceived and acted on by the inspected organisation. To improve the quality of care, the organisational change processes need to involve and impact the way care is delivered to the patients.

Background Myotonic Dystrophy 1 (DM1) causes progressive myopathy of extremity muscles. DM1 may also affect muscles of the trunk. The aim of this study was to investigate fat infiltration and muscle size in trunk muscles in DM1 patients, and in an age and gender matched control group. Further, explore how fat infiltration and degree of atrophy in these muscles are associated with motor and respiratory function in DM1 patients. Method We measured fat infiltration and trunk muscle size by MRI in 20 patients with genetically confirmed classic form of DM1, and compared these cases with 20 healthy, age and gender matched controls. In the DM1 group, we investigated correlations between MRI findings and clinical measures of muscle strength, mobility and respiration. We used sum scores for fat infiltration and muscle size in trunk flexors and trunk extensors in the analysis of group differences and correlations. Results Significant differences between cases and controls were present for fat infiltration in trunk flexors (p = 0.001) and trunk extensors (p =

BackgroundThe format and content of leadership development programmes for physicians is a theme for discussion in the literature.ObjectivesThe aim of this study is to explore healthcare executives’ perspectives on physician leadership development, focusing on perceived benefits and negative effects associated with multidisciplinary programmes.MethodsWe did a qualitative study based on data from semistructured interviews with 16 healthcare executives in US healthcare systems.ResultsWe found that one group perceived programmes targeting one profession as advantageous, promoting openness and professional relationships among peers. Other executives argued that multidisciplinary programmes could add value because they could bridge professional boundaries, strengthen networks and build leadership capacity throughout an organisation. Costs, timing, organisational culture and a lack of knowledge about how to run multidisciplinary programmes were challenges our informants associated with multidisciplinary leadership development programmes.ConclusionThis study identifies topics and challenges that can inform organisational policies and decisions about leadership development activities.

PURPOSE Young adults (18-24 years) frequently report poorer health care access and experience than older adults. We aimed to investigate how differences between young and older adults vary across 11 high-income countries. METHODS A total of 20,045 participants from 11 high-income countries (i.e., Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, United Kingdom, United States) participating in the Commonwealth Fund 2013 International Health Policy Survey. We compared young adults (18-24 years) with older adults (25-34; 35-49; 50-64; 65+ years) on three aspects of health care: overall satisfaction, cost barriers to access, and four indicators of consultation quality relating to adequate information, time, involvement, and explanation. RESULTS Across all participants, young adults reported significantly worse overall satisfaction (63.6% vs. 70.3%; p < .001) and more frequent cost barriers (21.3% vs. 15.2%; p < .001) than older adults. Country-level analyses showed that young adults reported lower overall satisfaction than older adults in five of 11 countries (Australia, Canada, Norway, Switzerland, United States) and more frequent cost barriers in six of 11 countries (Canada, France, Germany, Switzerland, Norway, United States). In five countries (Australia, Canada, France, Norway, Switzerland), most patient experience indicators were less positive among young adults than those among older adults. In three countries (Netherlands, New Zealand, United Kingdom), there was no significant difference between young and older adults on any indicator. CONCLUSIONS Associations between age and health care access/experience varied markedly between countries, suggesting that poor access and experience among young adults is not inevitable and may be amenable to policy/practice interventions.

ObjectiveTo identify and classify all clinical decisions that emerged in a sample of patient–physician encounters and compare different categories of decisions across clinical settings and personal characteristics.DesignCross-sectional descriptive evaluation of hospital encounters videotaped in 2007–2008 using a novel taxonomy to identify and classify clinically relevant decisions (both actions and judgements).Participants and setting372 patients and 58 physicians from 17 clinical specialties in ward round (WR), emergency room (ER) and outpatient (OP) encounters in a Norwegian university hospital.ResultsThe 372 encounters contained 4976 clinically relevant decisions. The average number of decisions per encounter was 13.4 (min–max 2–40, SD 6.8). The overall distribution of the 10 topical categories in all encounters was: defining problem: 30%, evaluating test result: 17%, drug related: 13%, gathering additional information: 10%, contact related: 10%, advice and precaution: 8%, therapeutic procedure related: 5%, deferment: 4%, legal and insurance related: 2% and treatment goal: 1%. Across three temporal categories, the distribution of decisions was 71% here-and-now, 16% preformed and 13% conditional. On average, there were 15.7 decisions per encounter in internal medicine specialties, 7.1 in ear–nose–throat encounters and 11.0–13.6 in the remaining specialties. WR encounters contained significantly more drug-related decisions than OP encounters (P=0.031) and preformed decisions than ER and OP encounters (PConclusionsPatient–physician encounters contain a larger number of clinically relevant decisions than described in previous studies. Comprehensive descriptions of how decisions, both as judgements and actions, are communicated in medical encounters may serve as a first step in assessing clinical practice with respect to efficiency and quality on a provider or system level.

Introduction To explore Norwegian general practitioners’ experiences with care coordination in primary health care. Methods Qualitative study using data from five focus groups with 32 general practitioners in Norway. We analysed the data using systematic text condensation, a descriptive and explorative method for thematic cross-case analysis of qualitative data. Results The general practitioners had different notions of care pathways. They expressed a wish and an obligation to be involved in planning and coordination of primary health-care services, but they experienced organisational and financial barriers that limited their involvement and contribution. General practitioners reported lack of information about and few opportunities for involvement in formal coordination initiatives, and they missed informal arenas for dialogue with other primary health-care professionals. They argued that the general practitioner’s role as coordinator should be recognised by other parties and that they needed financial compensation for contributions and attendance in meetings with the municipality. Discussion General practitioners need informal arenas for dialogue with other primary health-care professionals and access to relevant information to promote coordinated care. There might be an untapped potential for improving patient care involving general practitioners more in planning and coordinating services at the system level. Financial compensation of general practitioners contribution may promote increased involvement by general practitioners.

Henrik Ibsen (1828-1906) is a Norwegian playwright and poet who is known as the father of modern drama. Ibsen was in good health when he announced at his 70th birthday celebration that he intended to continue writing. His last play, When We Dead Awaken, was published in 1899. Why did Ibsen's dramatic writing come to an end? This chapter presents a medical account of Ibsen's health condition during the last 6 years of his life. It is based on a review of a document written by one of his doctors, Edvard Bull (1845-1925), letters, biographic information, and Ibsen's death certificate. The historical material suggests that he suffered from arteriosclerosis and cerebrovascular disease, and that he suffered several strokes, in 1900, 1901, and 1903. He suffered a paresis in his left foot, expressive aphasia, and a right hemiparesis, and he lost the ability to write. There is no evidence that Ibsen was hospitalised. He received medical treatment and care at his home and at a recreational spa. His health condition was unstable, and it is likely that he suffered from a series of smaller strokes in the last years of his life. Ibsen developed signs of heart failure, and he died peacefully from "paralysis cordis" at his home on May 23rd, 1906.

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

High quality care relies on interprofessional teamwork. We developed a short simulation-based course for final year medical, nursing and nursing anaesthesia students, using scenarios from emergency medicine. The aim of this paper is to describe the adaptation of an interprofessional simulation course in an undergraduate setting and to report participants’ experiences with the course and students’ learning outcomes. We evaluated the course collecting responses from students through questionnaires with both closed-ended and open-ended questions, supplemented by the facilitators’ assessment of students’ performance. Our data is based on responses from 310 students and 16 facilitators who contributed through three evaluation phases. In the analysis, we found that students reported emotional activation and learning outcomes within the domains self-insight and stress management, understanding of the leadership role, insight into teamwork, and skills in team communication. In subsequent questionnaire studies students reported having gained insights about communication, teamwork and leadership, and they believed they would be better leaders of teams and/or team members after having completed the course. Facilitators’ observations suggested a progress in students’ non-technical skills during the course. The facilitators observed that nursing anaesthesia students seemed to be more comfortable in finding their role in the team than the two other groups. In conclusion, we found that an interprofessional simulation-based emergency team training course with a focus on leadership, communication and teamwork, was feasible to run on a regular basis for large groups of students. The course improved the students’ team skills and received a favourable evaluation from both students and faculty. The final version of this research has been published in Journal of Interprofessional Care. © 2018 Taylor & Francis