Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study.

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.

Small and large fiber neuropathy in adults with myotonic dystrophy type 1.

Introduction: Myotonic dystrophy type 1 (DM1) is an inherited neuromuscular disorder that affects multiple organs. In this study, we investigated symptoms of pain and presence of small and large fiber neuropathy in the juvenile and adult form of DM1. Method: Twenty genetically verified DM1 patients were included. Pain was assessed, and neurological examination and investigations of the peripheral nervous system by quantification of small nerve fibers in skin biopsy, quantitative sensory testing and nerve conduction studies were performed. Results from skin biopsies were compared to healthy controls. Result: Seventeen patients reported chronic pain. Large and/or small fiber abnormalities were present in 50% of the patients. The intraepidermal nerve fiber density was significantly lower in the whole group of patients compared to healthy controls. Conclusion: Small-fiber neuropathy might be an important cause of pain in DM1.

Gold standard research and evidence applied: The Inspire Nursing Leadership Program.

Billions of dollars are invested annually in leadership development globally; however, few programs are evidence-based, risking adverse outcomes, and wasted time and money. This article describes the novel Inspire Nursing Leadership Program (INLP) and the outcomes-based process of incorporating gold standard evidence into its design, delivery, and evaluation. The INLP design was informed by a needs analysis, research evidence, and by nursing, Indigenous, and equity, diversity, and inclusion experts. The program's goals include enabling participants to develop leadership capabilities, cultivate strategic community partnerships, lead innovation projects, and connect with colleagues. Design features include an outcomes-based approach, the LEADS framework, and alignment with the principles of adult learning. Components include leadership impact projects, 360-assessments, blended interactive sessions, coaching, mentoring, and application and reflection exercises. The evaluation framework and subsequent proposed research design align to top-quality standards. Healthcare leadership programs must be evidence-based to support leaders in improving and transforming health systems.

Reducing unwarranted variation: can a 'clinical dashboard' be helpful for hospital executive boards and top-level leaders?

BACKGROUND/AIM: In the past decades, there has been an increasing focus on defining, identifying and reducing unwarranted variation in clinical practice. There have been several attempts to monitor and reduce unwarranted variation, but the experience so far is that these initiatives have failed to reach their goals. In this article, we present the initial process of developing a safety, quality and utilisation rate dashboard ('clinical dashboard') based on a selection of data routinely reported to executive boards and top-level leaders in Norwegian specialist healthcare. METHODS: We used a modified version of Wennberg's categorisation of healthcare delivery to develop the dashboard, focusing on variation in (1) effective care and patient safety and (2) preference-sensitive and supply-sensitive care. RESULTS: Effective care and patient safety are monitored with outcome measures such as 30-day mortality after hospital admission and 5-year cancer survival, whereas utilisation rates for procedures selected on cost and volume are used to follow variations in preference-sensitive and supply-sensitive care. CONCLUSION: We argue that selecting quality indicators of patient safety, quality and utilisation rates and presenting them in a dashboard may help executive hospital boards and top-level leaders to focus on unwarranted variation.

Impact of a cognitive behavioural therapy training program on family physician practices: Cross-sectional study in Norway.

OBJECTIVE: To investigate changes in FPs' self-reported clinical practices after participation in a comprehensive 1-year cognitive behavioural therapy (CBT) training course. DESIGN: Cross-sectional study. SETTING: Norway. PARTICIPANTS: Family physicians. MAIN OUTCOME MEASURES: Impact of the CBT training course on FPs' delivery of CBT to patients and their use of referral to specialized mental health care providers. RESULTS: Of the 217 FPs who had participated in the training course between 2009 and 2016, 124 completed the survey (response rate=57.1%); 99.2% of participating FPs reported using CBT tools daily in patient consultations, more than three-quarters reported changing the way they organized their workdays to accommodate CBT, and 75.0% reported using structured CBT consultations at least monthly after completing the course. The most common patient groups receiving structured CBT were those experiencing mild or moderate depression (22.8%), anxiety disorders (30.4%), or a combination of an anxiety disorder and depression (43.5%). The odds of making fewer referrals to specialized mental health care providers were 5.4 times higher among FPs who used Socratic questioning (P=.02), 4.7 times higher among those who provided consultation summaries (P=.01), and 3.3 times higher among those who had participated in a refresher course (P=.05). CONCLUSION: Comprehensive training in CBT promotes the use of CBT tools and strategies in family practice. Further longitudinal research (ideally randomized controlled studies) on patient outcomes related to CBT provided in family practices is required.

Translation, reliability, and validity of the Norwegian version of the ABILHAND-NMD and the ACTIVLIM for Myotonic Dystrophy type 1.

PURPOSE: To translate ABILHAND-NMD and ACTIVLIM into Norwegian and assess their psychometric properties in adults with Myotonic Dystrophy type 1(DM1). METHODS: ABILHAND-NMD and ACTIVLIM were translated into Norwegian through a standardized translation process. Psychometric properties of the translated questionnaires were tested. Intraclass correlation coefficient (ICC3.1) was used to assess test-retest reliability and Cronbach's α for internal consistency. The validity of the questionnaires was also assessed. RESULTS: A total of 39 adults with DM1 were included. We found excellent test-retest reliability on ABILHAND-NMD (ICC 0.91) and ACTIVLIM (ICC 0.93). We found a good internal consistency of ABILHAND-NMD with Cronbach's α (95%CI) of 0.80 (0.69-0.88) and ACTIVLIM with Cronbach's α (95%CI) of 0.88 (0.82-0.93) An expert group of healthcare professionals and a pilot group reported good face and content validity. We found a high correlation between ABILHAND-NMD and ACTIVLIM (r = 0.75), p < 0.001 implying good convergent validity. ABILHAND-NMD and ACTIVLIM showed no floor effect, but a potential for ceiling effect. CONCLUSION: The Norwegian versions of ABILHAND-NMD and ACTIVLIM are reliable and valid patient reported outcome measures for Myotonic Dystrophy type 1. The questionnaires are easy to administer as they take a short time to answer, and the participants reported no problems understanding the questions.

Myotonic Dystrophy type 1 cause myopathy and altered muscle function.Impaired arm- and hand function increases patients' need for assistance and reduces independence.The use of patient reported outcome measures (PROMs) to uncover impairments and activity limitations is important in clinical practice and research.The Norwegian versions of ABILHAND-NMD and ACTIVLIM are reliable and valid measures of manual ability and activity limitations for adults with Myotonic Dystrophy type 1.

Health related quality of life, service utilization and costs for patients with Huntington's disease in Norway.

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.

Contextual factors of external inspections and mechanisms for improvement in healthcare organizations: A realist evaluation.

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.

District Medical Officers' perception of their own role. / Kommuneoverlegers opplevelse av egen rolle.

BACKGROUND: 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. MATERIAL AND METHOD: 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. RESULTS: 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. INTERPRETATION: 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.

Functional Ability and Physical Activity in Hereditary Neuromuscular Diseases.

BACKGROUND: Physical activity may help to promote health in patients with Limb-girdle muscular dystrophy (LGMD) and Charcot-Marie-Tooth disease (CMT). OBJECTIVE: To investigate associations between functional ability and other variables, with physical activity in people with LGMD and CMT grouped according to the International Classification of Functioning, Disability, and Health (ICF). METHODS: We did a cross-sectional study, recruiting respondents from the Norwegian registry of inherited neuromuscular disorders. We used the Norwegian version of Barthel index of Activities of Daily Living (ADL) to measure functional ability and the International Physical Activity Questionnaire -short form (IPAQ-sf) to classify physical activity. We used multivariable logistic regression analysis to investigate associations between variables. RESULTS: 145 subjects were recruited (79 with CMT and 66 with LGMD). 55.6% of the subjects met a minimum recommendation of physical activity. Participants with moderate to severe functional ability were more likely to be physically inactive compared to those with normal functional ability (OR 19.7; 95% CI 3.1-127.2). Mildly decreased functional ability also showed higher odds of being physically inactive compared to participants with normal functional ability (OR 4.1; 95% CI 1.1-15.6). Higher education was associated with inactivity. Fatigue, participation in physiotherapy, and participation in adapted physical activity programs were not associated with physical activity. CONCLUSIONS: Low functional ability was associated with physical inactivity in both LGMD and CMT. Association between higher education and inactivity might indicate the need to provide more understanding about physical activity benefit in this group.

Medical leadership development during the COVID-19 pandemic.

BACKGROUND: A leadership development programme (The Health Leadership School) was launched in 2018 for junior doctors and medical students in Norway. OBJECTIVE: To 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. METHODS: Participants who completed The Health Leadership School in 2018-2020 were invited to respond to a web-based questionnaire. RESULTS: A 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. CONCLUSION: This 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.

The management and clinical knowledge of headache disorders among general practitioners in Norway: a questionnaire survey.

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.

Correction: Early diagnosis of sepsis in emergency departments, time to treatment, and association with mortality: An observational study.

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

Pain in adult myotonic dystrophy type 1: relation to function and gender.

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.

Promoting leadership and quality improvement through external inspections of management of sepsis in Norwegian hospitals: a focus group study.

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.

Effects of external inspections on sepsis detection and treatment: a stepped-wedge study with cluster-level randomisation.

OBJECTIVE: To 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. DESIGN: Incomplete 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. SETTING: Nationwide inspections of sepsis care in emergency departments in Norwegian hospitals. PARTICIPANTS: 7407 patients presenting to hospital emergency departments with sepsis. INTERVENTION: External inspections of sepsis detection and treatment led by a public supervisory institution. MAIN OUTCOME MEASURES: Process measures for sepsis diagnostics and treatment, length of hospital stay and 30-day all-cause mortality. RESULTS: After 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. CONCLUSIONS: External 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 REGISTRATION: NCT02747121.

Mediators of change in healthcare organisations subject to external assessment: a systematic review with narrative synthesis.

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.

Inspecting teams' and organisations' expectations regarding external inspections in health care: a qualitative study.

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.