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Abstract Background Huntington’s disease (HD) has substantial impact on patients and carers’ lives. Managing patients in the advanced phase of HD may be challenging to primary health care professionals. The aim of this study is to elicit health care professionals’ experiences of managing the challenges with patients with advanced HD in primary health care. Methods We did a qualitative study, collecting data from four focus group interviews with 22 primary health care professionals who had experience with caring for patients with HD in Norway. The data were analysed using a qualitative content analysis method, systematic text condensation. Results We found that health care professionals who care for patients with HD in primary health care experience challenges related to patients’ behaviour, family members and caregivers, professionals’ individual competency, and the organizational context. They conveyed that successful care and management of patients with advanced HD was dependent on individuals’ competency and “everyday tactics”, well-functioning teams, and leadership and organizational support. Conclusion In addition to individual competencies, including being personally suitable for the job, well-functioning primary care teams, and organization support and training is important for health care professionals’ ability to manage patients with advanced HD in primary health care.

Abstract 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.

Abstract 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.

Abstract 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.

Abstract Background There is a gap in the literature regarding what takes place between the announcement of a regulatory intervention, such as an external inspection of a health care organisation, and the inspecting body’s site visit. This study aimed to explore inspecting bodies’ expectations of how inspected organisations should prepare before an external inspection and to elucidate how inspected health care organisations prepare before site visits. Methods This qualitative study was based on data from 17 group interviews with a total of 75 participants representing inspection teams, organisation leaders and clinicians in inspected health care organisations. The data were analysed using a qualitative content analysis method. Results We identified two approaches to how the inspection teams expected that the inspected organisations should prepare before site visits. In the first approach the inspection teams did not expect any improvement activities to be initiated during this period and focused on identifying inadequacies that the inspected organisations should subsequently improve. In the second approach the inspection teams expected organisations to review their own practices and begin improvement activities if necessary. The inspected organisations responded in different ways to an upcoming site visit, and the organisations’ leaders were important in determining which activities would be initiated. Organisations in which leaders involved clinicians in assessing care delivery tended to initiate action to improve and expected inspection teams to assess their ongoing improvement work and provide guidance on further improvements. Leaders who did not involve clinicians in assessing the quality of care tended to perceive the current quality of care as adequate on the basis of reviewing written guidelines. They did not initiate action to improve care delivery apart from updating written guidelines describing how care should be delivered, and they expected the inspection team to confirm that their current practices were in line with the guidelines and external standards. Conclusions To promote anticipatory effects in inspected organisations, inspecting bodies should stress the importance of assessing clinical practice and involving frontline clinical staff and leaders in the assessment and in improvement work before the site visit.

Abstract Background Physician turnover is a concern in many health care systems globally. A better understanding of physicians’ reasons for leaving their job may inform organisational policies to retain key personnel. The aim of this study was to investigate hospital physicians’ intention to leave their current job, and to investigate if such intentions are associated with how physicians assess their leaders and the organisational context. Methods Data was derived from a survey of 971 physicians working in public hospitals in Norway in 2016. The data was analysed using descriptive statistics and multivariate analysis. Results We found that 21.0% of all hospital physicians expressed an intention to leave their current job for another job. An additional 20.3% of physicians had not made up their mind whether to stay or leave. Physicians’ perceptions of their leaders and the organisational context influence their intention to leave their hospital. Respondents who perceived their leaders as professional-supportive had a significantly lower probability of reporting an intention to leave their job. The analysis suggests that organisational context, such as department mergers, weigh in on physicians’ considerations about leaving their current job. Social climate and commitment are important reasons why physician stay. Conclusions A professional-supportive leadership style may have a positive influence on retention of physicians in public hospitals. Further research should investigate how retention of physicians is associated with performance related to organisational and leadership style.

Abstract 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.

Abstract 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 =

Objective: To explore general practitioners’ (GPs) views on leadership roles and leadership challenges in general practice and primary health care. Design: We conducted focus groups (FGs) with 17 GPs. Setting: Norwegian primary health care. Subjects: 17 GPs who attended a 5 d course on leadership in primary health care. Results: Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement. Conclusions: GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance.KEY POINTS Little is known about doctors’ experiences and views about leadership in general practice and primary health care. Our study suggests that: There is a lack of preparation and formal training for the leadership role. GPs experience tensions between the clinical and leadership role. GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care.

Objective: Feedback may be scarce and unsystematic during students' clerkship periods. We wanted to explore general practitioners' (GPs) and medical students' experiences with giving and receiving supervision and feedback during a clerkship in general practice, with a focus on their experiences with using a structured tool (StudentPEP) to facilitate feedback and supervision. Design: Qualitative study. Setting: Teachers and students from a six-week clerkship in general practice for fifth year medical students were interviewed in two student and two teacher focus groups. Subjects: 21 GPs and nine medical students. Results: We found that GPs first supported students' development in the familiarization phase by exploring the students' expectations and competency level. When mutual trust had been established through the familiarization phase GPs encouraged students to conduct their own consultations while being available for supervision and feedback. Both students and GPs emphasized that good feedback promoting students' professional development was timely, constructive, supportive, and focused on ways to improve. Among the challenges GPs mentioned were giving feedback on behavioral issues such as body language and insensitive use of electronic devices during consultations or if the student was very insecure, passive, and reluctant to take action or lacked social or language skills. While some GPs experienced StudentPEP as time-consuming and unnecessary, others argued that the tool promoted feedback and learning through mandatory observations and structured questions. Conclusion: Mutual trust builds a learning environment in which supervision and feedback may be given during students' clerkship in general practice. Structured tools may promote feedback, reflection and learning. Key Points Observing the teacher and being supervised are essential components of Medical students' learning during general practice clerkships. Teachers and students build mutual trust in the familiarization phase. Good feedback is based on observations, is timely, encouraging, and instructive. StudentPEP may create an arena for structured feedback and reflection.

Kunnskapsutviklingen innen medisin, ny teknologi og endringer i befolkningens forventninger og behov fører til stadige endringer i helsevesenet. Hvilke signaler har norske myndigheter gitt de siste ti år når det gjelder innholdet i medisinstudiet, og hvordan har norske universiteter forholdt seg til disse? En gjennomgang av offentlige dokumenter og rapporter viser at norske helse- og utdanningsmyndigheter forventer at nyutdannede leger tilegner seg kunnskap om kvalitetsforbedring og pasientsikkerhet og har forståelse for systemer og behandlingsforløp. Det kreves videre at leger kan samarbeide i team på tvers av tjenestenivåer og profesjonelle grupper, kan involvere pasienter og brukere, og har kompetanse innen elektronisk samhandling og forebyggende helsearbeid. Norske universiteter har forholdt seg til nye kompetansekrav og signaler fra myndighetene ved å iverksette endringer og revisjoner i de medisinske studieplanene. Utviklingen av medisinstudiet fordrer dialog mellom universitetsmiljøene og nasjonale og internasjonale fag- og forskningsmiljøer, myndigheter, studenter, arbeidsgivere og representanter for brukere og pasienter. Statlig detaljstyring av studiets innhold vil kunne hemme lokal innovasjon og universitetenes eget kontinuerlige arbeid med å utvikle og kvalitetssikre studieplanene. Nøkkelord: medisinstudiet, profesjonalitet, kompetanse, regulering

Introduction:Huntington’s disease is hereditary and causes motor, cognitive and behavioural symptoms that progress over time. The aim of this article is to describe the disease and to highlight why physiotherapy is important and to point out potential treatment strategies. Main section:Knowledge and principles about physical treatment can be transferred from other neurological diseases. There is a growing amount of research about physiotherapy and Huntington’s disease. Early intervention can improve the function and a goal is to sustain the level of function as long as possible. To motivate patients and teach them training they are able to do may help them to stay active. It may be a good idea to introduce aids while the patients are still able to learn how to use them. There are many tests that can be used to measure change, but no specific tests for HD. Conclusion:It’s important to take into account all aspects of the disease in addition to the motor symptoms. Training and physical therapy is an important aspect of the treatment of HD

[This corrects the article DOI: 10.1371/journal.pone.0227652.].

Objective Inspections 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.Design Focus group study.Setting Statutory inspections of sepsis treatment in hospital emergency departments in Norway.Participants Clinicians, 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.Results Three 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.Conclusion Our 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.

Objectives External 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.Methods We 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.Results We 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.Conclusions External 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.

BackgroundEarly 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.MethodsThis 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.ResultsOf 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).ConclusionsKey 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.

Patients' adherence to antiretroviral therapy (ART) is important for effective medical treatment of HIV/AIDS. We conducted a qualitative interview study in the Copperbelt Province of Zambia in 2006. The aim of the study was to explore patients' and health care professionals' perceived barriers and facilitators to patients' adherence to ART. Based on data from individual interviews and focus group interviews with a total of 60 patients and 12 health care professionals, we identified barriers and facilitators related to patients' beliefs and behaviours, the health service, and socio-economic and cultural factors. Among the barriers we identified were lack of communication and information about ART, inadequate time during consultations, lack of follow-up and counselling, forgetfulness, stigma, discrimination and disclosure of HIV status, lack of confidentiality in the treatment centres, and lack of nutritional support. Feeling better, prospects of living longer, family support, information about ART, support for income-generating activities, disclosure of HIV status, prayers and transport support were among the facilitators. Our study suggests that several issues need to be considered when providing ART. Further research is needed to study interactions between patients and their health care providers. Our findings can inform interventions to improve adherence to ART.