Search

Background Despite promising ongoing clinical trials there is no curative treatment for Huntington’s disease (HD), and patients need tailored comprehensive healthcare for optimal function and quality of life. No studies have systematically investigated the unmet needs for healthcare and social services or their associations with other factors such as patients’ quality of life. Aims The present study aims to identify the level and type of unmet healthcare service needs using a newly developed scale, the Needs and Provision Complexity Scale (NPCS), and to examine associations with clinical and socio-demographic factors. Methods 86 patients living in South-East Norway were included in a cross-sectional population based study. Socio-demographic and clinical characteristics were collected. We used the NPCS to evaluate unmet healthcare services needs, the Unified Huntington’s Disease Rating Scale’s Total Functional Capacity to measure functional ability (stages I-V), and EQ-5D Visual Analogue Scale to assess health-related Quality of Life (HRQoL). Descriptive and multivariate regression analyses were used. Results 79 patients reported unmet needs for healthcare and social services. High levels of unmet needs were found in all disease stages, but being in stage III increased the odds of having a high level of unmet needs by 3.5 times. Higher levels of unmet needs were associated with lower HRQoL (β value: −0.228; p = 0.018). Conclusions Many patients do not receive the tailored care they need to maintain and improve function and quality of life. Clinicians should systematically assess needs for healthcare and social services, in addition to performing clinical evaluations, specifically of patients in the middle disease stage. Norway is a well-fare state, and these findings indicate that increased awareness of HD is needed on the policy level. Studies from different countries are needed to verify the results across differently organised health-care systems.

Background Research suggests that physical activity is associated with improved quality of life and motor function in individuals affected by Huntington’s disease (HD). Few studies have assessed the level of physical activity in the general population of people with HD. Aims This study aimed to describe the self-reported levels of physical activity in individuals with early to mid-stage HD, and to investigate how physical activity is associated with health-related quality of life (HRQoL) and life satisfaction (LS). Methods 42 patients in stages I-III living in South-East Norway were included in a cross-sectional study. Physical activity, including sedentary behaviour were recorded using the short form of the International Physical Activity Questionnaire (IPAQ-SF). We assessed HRQoL using the EQ-5D Visual Analogue Scale and LS using the Satisfaction with life scale (SWLS). Socio-demographic and clinical characteristics were also collected. Descriptive and multivariate analyses were performed. Results 6 (14%) participants reported high, 21 (50%) medium and 15 (36%) low levels of physical activity. Multivariate regression analyses revealed that physical activity levels (β value = 5.2, p = 0.047) and apathy (β value = −6.5, p = 0.003) were strongest associated with LS and sedentary behaviour (β value = −2.7, p = 0.030), depression (β value = −12.8, p = 0.042) and apathy (β value = −17.5, p = 0.008) were strongest associated with HRQoL. Conclusions Physical activity and apathy may impact HRQoL and life satisfaction in individuals with HD. Sedentary behaviour seems to be an important variable on its own, and should be subject for further research.

Background Little is known about variation in service provision for those affected with Huntington’s disease. The Care Improvement Committee of the Enroll-HD study did a survey to describe how health care services are organised and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. Methods Enroll-HD and other eligible sites (EHDN’s REGISTRY sites) were invited to respond to a 69 items survey that was distributed in 2014. 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. The majority of centres (59.7%) follow 50–199 patients, 21.9% care for more than 200. Most centres (75.2%) provide care in all stages of HD, and nearly all (94%) review pre-symptomatic cases. Care is multidisciplinary in 54.6% of sites, with outreach clinics offered by 48.2%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centres. Conclusion 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 organised and how such features may be associated with quality of care.

Background This study aimed to evaluate the feasibility and benefit of a structured exercise intervention in people with Huntington’s disease (HD). Methods This study was conducted at 6 sites, and participants were randomised into either exercise or control (usual care) groups, and were assessed at baseline, 13 and 26 weeks. The intervention was 12 weeks, three times per week progressive exercise program, including aerobic (stationary cycling) and upper and lower body strengthening exercise with tapered 1:1 support for 20 of 36 sessions. The trial was registered (Current Controlled Trials ISRCTN11392629). Results 314 adults were assessed for eligibility: 248 did not meet inclusion criteria, 34 declined, and 32 were recruited and randomised. Three individuals in the intervention group were withdrawn within the first month due to concomitant medical conditions, resulting in 14 participants in intervention and 15 in control groups. There were two AEs in the intervention group, both related to previous medical conditions, and there were two SAEs, both in the control group. The intervention group had statistically significantly better fitness (predicted VO2 max difference: 493.3 ml.min-1, 95% CI: [97.1, 887.6]), lower UHDRS mMS (difference 2.9 points, 95% [−5.42, −0.32]) and lower weight at Week 13 (difference 2.25 kg, 95% CI: [−4.47, −0.03]). Conclusions This study demonstrates that a short-term exercise intervention is safe and feasible. Individuals with HD may benefit from structured exercise, and intensity, monitoring and support may be key factors in optimising response. Larger scale trials are now required to fully elucidate the extended clinical potential of exercise in HD. This trial was funded by The Jacques and Gloria Gossweiler Foundation.

Objective The medical literature lacks a comprehensive taxonomy of decisions made by physicians in medical encounters. Such a taxonomy might be useful in understanding the physician-centred, patient-centred and shared decision-making in clinical settings. We aimed to identify and classify all decisions emerging in conversations between patients and physicians. Design Qualitative study of video recorded patient–physician encounters. Participants and setting 380 patients in consultations with 59 physicians from 17 clinical specialties and three different settings (emergency room, ward round, outpatient clinic) in a Norwegian teaching hospital. A randomised sample of 30 encounters from internal medicine was used to identify and classify decisions, a maximum variation sample of 20 encounters was used for reliability assessments, and the remaining encounters were analysed to test for applicability across specialties. Results On the basis of physician statements in our material, we developed a taxonomy of clinical decisions—the Decision Identification and Classification Taxonomy for Use in Medicine (DICTUM). We categorised decisions into 10 mutually exclusive categories: gathering additional information, evaluating test results, defining problem, drug-related, therapeutic procedure-related, legal and insurance-related, contact-related, advice and precaution, treatment goal, and deferment. Four-coder inter-rater reliability using Krippendorff9s α was 0.79. Conclusions DICTUM represents a precise, detailed and comprehensive taxonomy of medical decisions communicated within patient–physician encounters. Compared to previous normative frameworks, the taxonomy is descriptive, substantially broader and offers new categories to the variety of clinical decisions. The taxonomy could prove helpful in studies on the quality of medical work, use of time and resources, and understanding of why, when and how patients are or are not involved in decisions.

Background There has been an increased interest in recruiting health professionals with a clinical background to management positions in health care. We know little about the factors that influence individuals’ decisions to engage in management. The aim of this study is to explore clinicians’ journeys towards management positions in hospitals, in order to identify potential drivers and barriers to management recruitment and development. Methods We did a qualitative study which included in-depth interviews with 30 clinicians in middle and first-line management positions in Norwegian hospitals. In addition, participant observation was conducted with 20 of the participants. The informants were recruited from medical and surgical departments, and most had professional backgrounds as medical doctors or nurses. Interviews were analyzed by systemic text condensation. Results We found that there were three phases in clinicians’ journey into management; the development of leadership awareness, taking on the manager role and the experience of entering management. Participants’ experiences suggest that there are different journeys into management, in which both external and internal pressure emerged as a recurrent theme. They had not anticipated a career in clinical management, and experienced that they had been persuaded to take the position. Being thrown into the position, without being sufficiently prepared for the task, was a common experience among participants. Being left to themselves, they had to learn management “on the fly”. Some were frustrated in their role due to increasing administrative workloads, without being able to delegate work effectively. Conclusions Path dependency and social pressure seems to influence clinicians’ decisions to enter into management positions. Hospital organizations should formalize pathways into management, in order to identify, attract, and retain the most qualified talents. Top managers should make sure that necessary support functions are available locally, especially for early stage clinician managers.

Directly observed treatment (DOT) has been implemented globally as a strategy in treatment of tuberculosis. Studies from high-endemic settings show that DOT involves social and economical burdens for patients, but little is known about experiences with practicing DOT in low-endemic settings. The present study explores patients' and health professionals' views and experiences with DOT in Norway.In-depth interviews were conducted with 22 patients originating from Somalia and Ethiopia and with 20 health professionals. Data from the interviews were analysed using systematic text condensation.We found that there was little room for patients to negotiate whether or not to consent to the organization of treatment (DOT). Patients told that it was difficult to question the way treatment was organized, as they got the impression that there was no other way of gaining access to medication. Both patients and health professionals reported that persuasion based on authority and subtle threats was used as means to facilitate patients' acceptance of DOT. A majority of patients experienced DOT as humiliating and discriminating, while some had the experience of being cared for. Patients who attended school or had occupational obligations reported high social costs related to the treatment. Patients with positive experiences told that they had been given an opportunity to negotiate flexible treatment schedules and emphasized the importance of continuity among health professionals. Health professionals had divergent views and practices. Some argued that patients should be treated equally, while others argued for an individualized and flexible approach.The practice of DOT reflects societal power structures that influence the clinical interactions between health professionals and patients. To avoid experiences of disempowerment and humiliation among patients, treatment and care should be organized in a way that safeguards patients' right to consent to treatment and that allows patients to negotiate an individualized treatment schedule.

Background Delayed prescribing of antibiotics for respiratory tract infections (RTIs) lowers the amount of antibiotics consumed. Several national treatment guidelines on RTIs recommend the strategy. When advocating treatment innovations, the feasibility and credibility of the innovation must be taken into account. The objective of this study was to explore GPs use and patients uptake of wait-and-see prescriptions for RTIs, and to investigate the feasibility of the strategy from GPs' and patients' perspectives. Methods Questionnaire survey among Norwegian GPs issuing and patients receiving a wait-and-see-prescription for RTIs. Patients reported symptoms, confidence and antibiotics consumption, GPs reported diagnoses, reason for issuing a wait-and-see-prescription and their opinion about the method. Results 304 response pairs from consultations with 49 GPs were received. The patient response rate was 80%. The most common diagnosis for the GPs to issue a wait-and-see prescription was sinusitis (33%) and otitis (21%). 46% of the patients reported to consume the antibiotics. When adjusted for other factors, the diagnosis did not predict antibiotic consumption, but both being 16 years or more (p = 0,006) and reporting to have a fever (p = 0,012) doubled the odds of antibiotic consumption, while feeling very ill more than quadrupled the odds (p = 0,002). In 210 cases (69%), the GP found delayed prescribing a very reasonable strategy, and 270 patients (89%) would prefer to receive a wait-and-see prescription in a similar situation in the future. The GPs found delayed prescribing very reasonable most frequently in cases of sinusitis (79%, p = 0,007) and least frequently in cases of lower RTIs (49%, p = 0,002). Conclusion Most patients and GPs are satisfied with the delayed prescribing strategy. The patients' age, symptoms and malaise are more important than the diagnosis in predicting antibiotic consumption. The GP's view of the method as a reasonable approach depends on the patient's diagnosis. In our setting, delayed prescribing seems to be a feasible strategy, especially in cases of sinusitis and otitis. Educational efforts to promote delayed prescribing in similar settings should focus on these diagnoses.

Introduction Huntington’s disease (HD) is a complex and progressive disease, and long-term, individually tailored multidisciplinary healthcare is important to maintain patients’ functional ability and quality of life. In order to plan and improve provision of healthcare services it is essential to understand the met and unmet healthcare needs of individuals and families with HD. While previous research has described utilisation of healthcare services in HD in Europe, studies that systematically examine the health care needs of these patients are needed in order to advance our understanding. Aims To identify met and unmet health services needs among HD patients and assess the relationship between unmet needs, functional disability, and health related quality of life. Methods To date we included 80 patients with clinical diagnosis of HD residing in the South-East region of Norway. Measurements: Needs and Provision Complexity Scale (NPCS) (rater and patient version), a scale specifically developed to identify healthcare needs in patients with complex neurological disabilities. An algorithm is used to identify unmet healthcare needs. Additionally, the UHDRS Total Functional Capacity and Functional assessment scales and the EQ-5D a self-report measurement on quality of life scale are used. Demographic and patient characteristics are recorded. Results We are currently analysing the collected data, and preliminary results will be presented at the conference. Conclusion Modelling of met and unmet healthcare needs and it’s relation to functional disability and quality of life across all HD disease stages may provide important information when planning appropriate long term multidisciplinary healthcare services for HD patients and families.

Background Knowledge about lay beliefs of etiology, transmission and treatment of TB, and lay perceptions of the relationship between TB and HIV is important for understanding patients' health seeking behavior and adherence to treatment. We conducted a study to explore lay beliefs about TB and TB/HIV co-infection in Addis Ababa, Ethiopia. Findings We conducted a qualitative study using in-depth interviews with 15 TB/HIV co-infected patients and 9 health professionals and focus group discussions with 14 co-infected patients in Addis-Ababa, Ethiopia. We found that a predominant lay belief was that TB was caused by exposure to cold. Excessive sun exposure, exposure to mud, smoking, alcohol, khat and inadequate food intake were also reported as causes for TB. Such beliefs initially led to self-treatment. The majority of patients were aware of an association between TB and HIV. Some reported that TB could transform into HIV, while others said that the body could be weakened by HIV and become more susceptible to illnesses such as TB. Some patients classified TB as either HIV-related or non-HIV-related, and weight loss was a hallmark for HIV-related TB. The majority of patients believed that people in the community knew that there was an association between TB and HIV, and some feared that this would predispose them to HIV-related stigma. Conclusion There is a need for culturally sensitive information and educational efforts to address misperceptions about TB and HIV. Health professionals should provide information about causes and treatment of TB and HIV to co-infected patients.

Background Delayed prescribing has been promoted as a strategy that meets patients9 expectations and helps to avoid unnecessary use of antibiotics in upper respiratory tract infections. Aim To explore GPs9 views on and experiences with delayed prescribing in patients with acute upper respiratory tract infections. Design of study Qualitative study involving focus groups. Setting Norwegian general practice. Method Qualitative analysis of data collected from five focus groups comprising 33 GPs who took part in a quality-improvement programme of antibiotic prescribing. Results The views of GPs differed on the usefulness of delayed prescribing. GPs who endorsed the strategy emphasised shared decision making and the creation of opportunities for educating patients, whereas GPs who were negative applied the strategy mainly when being pressed to prescribe. Mild and mainly harmless conditions of a possible bacterial origin, such as acute sinusitis and acute otitis, were considered most suitable for delayed prescribing. A key argument for issuing a wait-and-see prescription was that it helped patients avoid seeking after-hours care. For issuing a wait-and-see prescription, the GPs required that the patient was ‘knowledgeable’, able to understand the indications for antibiotics, and motivated for shared decision making. GPs emphasised that patients should be informed thoroughly when receiving a wait-and-see prescription. Conclusion Not all GPs endorse delayed prescribing; however, it appears to be a feasible approach for managing patients with early symptoms of mild upper respiratory tract infections of a possible bacterial origin. Informing the patients properly while issuing wait-and-see prescriptions is essential.

Background The Prescription Peer Academic Detailing (Rx-PAD) project is an educational intervention study aiming at improving GPs' competence in pharmacotherapy. GPs in CME peer groups were randomised to receive a tailored intervention, either to support a safer prescription practice for elderly patients or to improve prescribing of antibiotics to patients with respiratory tract infections. The project was based on the principles of peer group academic detailing, incorporating individual feedback on GPs' prescription patterns. We did a study to explore GPs and tutors' experiences with peer group academic detailing, and to explore GPs' reasons for deviating from recommended prescribing practice. Methods Data was collected through nine focus group interviews with a total of 39 GPs and 20 tutors. Transcripts from the interviews were analyzed by two researchers according to a procedure for thematic content analysis. Results A shared understanding of the complex decision-making involved in prescribing in general practice was reported by both GPs and tutors as essential for an open discussion in the CME groups. Tutors experienced that CME groups differed regarding structure and atmosphere, and in some groups it was a challenge to run the scheme as planned. Individual feedback motivated GPs to reflect on and to improve their prescribing practice, though feedback reports could cause distress if the prescribing practice was unfavourable. Explanations for inappropriate prescriptions were lack of knowledge, factors associated with patients, the GP's background, the practice, and other health professionals or health care facilities. Conclusions GPs and tutors experienced peer group academic detailing as a suitable method to discuss and learn more about pharmacotherapy. An important outcome for GPs was being more reflective about their prescriptions. Disclosure of inappropriate prescribing can cause distress in some doctors, and tutors must be prepared to recognise and manage such reactions.

Background Non-adherence to tuberculosis (TB) treatment is an important barrier for TB control programs because incomplete treatment may result in prolonged infectiousness, drug resistance, relapse, and death. The aim of the present study is to explore enablers and barriers in the management of TB treatment during the first five months of treatment in Addis Ababa, Ethiopia. Methods Qualitative study which included 50 in-depth interviews and two focus groups with TB patients, their relatives and health personnel. Results We found that loss of employment or the possibility to work led to a chain of interrelated barriers for most TB patients. Daily treatment was time-consuming and physically demanding, and rigid routines at health clinics reinforced many of the emerging problems. Patients with limited access to financial or practical help from relatives or friends experienced that the total costs of attending treatment exceeded their available resources. This was a barrier to adherence already during early stages of treatment. A large group of patients still managed to continue treatment, mainly because relatives or community members provided food, encouragement and sometimes money for transport. Lack of income over time, combined with daily accumulating costs and other struggles, made patients vulnerable to interruption during later stages of treatment. Patients who were poor due to illness or slow progression, and who did not manage to restore their health and social status, were particularly vulnerable to non-adherence. Such patients lost access to essential financial and practical support over time, often because relatives and friends were financially and socially exhausted by supporting them. Conclusion Patients' ability to manage TB treatment is a product of dynamic processes, in which social and economic costs and other burdens change and interplay over time. Interventions to facilitate adherence to TB treatment needs to address both time-specific and local factors.

Objective To explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Methods We interviewed 40 men and women diagnosed with heterozygous familial hypercholesterolemia. Data were analyzed by systematic text condensation inspired by Giorgi's phenomenological method. Results Participants disclosed their condition as inherited and not caused by an unhealthy lifestyle. They could experience guilt or shame if they violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. Conclusion Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. Practice implications Health professionals should be sensitive to a patient's readiness for counseling in order to diminish the risk of unintentionally inducing guilt and shame in patients.

Amyotrophic lateral sclerosis leads to severe paresis and early death. Nevertheless, many patients claim to have a good quality of life. Pathographies, i.e. biographical books describing disease experiences, may contribute to our understanding of the impact of severe disease on quality of life.We discuss how living with amyotrophic sclerosis is depicted in three pathographies. These are interpreted in the light of literature about pathographies and our own clinical and theoretical experience with the disease.A common theme for the books is that the patient's identity gradually becomes less dependent on the body. Criticism of health care and welfare systems and fighting for care are important in some narratives, while others barely mention these subjects. The authors delineate different strategies for coping with loss of body functions and dependence on care and technical aid, but they all emphasize that meaningful lives are led despite of major disabilities.The pathographies challenge our knowledge and attitudes to quality of life and dignity with severe disease, and shed light on experiences that are under-represented in medical literature. Narratives in the form of pathographies may provide valuable insight to health professionals, patients and the public.

In contrast to Henrik Ibsen's literary work, the author's health during the last years of his life has not attracted much attention. Ibsen suffered from a variety of symptoms due to arteriosclerotic cardiovascular disease. He was first hit by a stroke in March 1900, which resulted in paresis of his left foot. During the summer 1900 he was ill with erysipelas. Thereafter, in 1901 and in 1903, he was hit by two more strokes, which left him with severe right hemiparesis and aphasia. Ibsen's varying health might indicate that he was hit by several additional minor stokes in both hemispheres, most likely tromboembolic cerebral infarcts. During his last years he developed symptoms of cardiac failure, and it was probably an increasing cardiac failure that led to the cardiac arrest that ended his life.

PURPOSE Knowledge about the ways patients perceive their vulnerability to disease is important for communication with patients about risk and preventive health measures. This interview study aimed to explore how patients with a diagnosis of heterozygous familial hypercholesterolemia understand and perceive their vulnerability to coronary heart disease. METHODS We did a qualitative study of 40 patients with familial hypercholesterolemia who were recruited through a lipid clinic in Norway. We elicited participants’ perceptions about their vulnerability to heart disease in semistructured interviews. Data were analyzed by systematic text condensation inspired by Giorgi’s phenomenological method. RESULTS We found that participants negotiated a personal and dynamic sense of vulnerability to coronary heart disease that was grounded in notions of their genetic and inherited risk. Participants developed a sense of their vulnerability in a 2-step process. First, they consulted their family history to assess their genetic and inherited risk, and for many a certain age determined when they could expect to develop symptoms of coronary heart disease. Second, they negotiated a personal sense of vulnerability by comparing themselves with their family members. In these comparisons, they accounted for individual factors, such as sex, cholesterol levels, use of lipid-lowering medications, and lifestyle. Participants’ personal sense of vulnerability to heart disease could shift dynamically as a result of changes in situational factors, such as cardiac events in the family, illness experiences, or becoming a parent. CONCLUSIONS Patients with a diagnosis of familial hypercholesterolemia negotiate a personal and dynamic sense of vulnerability to coronary heart disease that is grounded in their understanding of their genetic and inherited risk. Doctors should elicit patients’ understanding of their family history and their personal vulnerability to individualize clinical management.

Objective. To explore barriers in the health service to diagnosis and treatment experienced by women at increased risk of coronary heart disease (CHD). Design. Qualitative study using semi-structured interviews. Setting. Norway. Subjects. Twenty women diagnosed with heterozygous familial hypercholesterolemia (FH) recruited through a lipid clinic. Results. Women reported three specific barriers related to diagnosis and treatment of CHD. They had to struggle to take a cholesterol test; they experienced that their risk was being downplayed by doctors; and that their symptoms of CHD were misinterpreted when they consulted doctors for evaluation and treatment. Conclusion. Stereotyping CHD as a man's disease may result in barriers to diagnosis and treatment for women. Doctors should ask the patient about the family history of CHD if a concern about heart disease is on the patient's agenda.

The Journal of the Norwegian Medical Association is a peer review-based general medical journal in Norwegian. Peer review is a hallmark of scientific medical journals. The purpose of a peer review system is to evaluate and secure that only high-quality, up-dated and relevant articles are offered to readers. Peer review has been criticised as being subjective, time-consuming and hindering new hypotheses and thinking. During the last years, peer review has been evaluated scientifically. Increased attention is being given to editorial work and to scientific writing and reading.

The authors describe a course titled Medicine and the Arts, established in 1996, that is part of the first semester of the undergraduate medical curriculum at the University of Oslo Faculty of Medicine. The course comprises four two-hour seminars on literature, visual arts, architecture, and music. The core objectives of the course are to demonstrate how art can be a source of personal and professional development, and also how art represents a source of insight into patients' experiences and the social, cultural, and historical context of medical practice. The course emphasizes that art is ambiguous and many layered and that its interpretation requires sensitivity, engagement, imagination, and reflection. Fostering these skills is a major aim of the course because these skills are also essential for clinical competence and professional development. The course's seminars are integrated into the curriculum but are not compulsory. Although the topics covered by the course have not been explicitly addressed in the formal examination of students, there has been some discussion about doing so, which would be a signal that those topics are as important as others in the curriculum.

During the last decades attempts have been made at integrating art in medical education. What should be the form, content and objectives of such teaching?We address this question on the basis of a review of articles in medical journals from 1990 until May 2001 about art and undergraduate medical education.A common reason for integrating art in undergraduate medical education is that art may act as a balance to the dominance of natural science. One pedagogical approach is to use art as a tool for training skills. Many articles emphasise that teaching art should also contribute to the personal and professional development of medical students. The majority of articles report on courses in literature and medicine. Art is often taught in small or medium-sized groups; courses may last from single lessons to programmes over years. The aim of art courses may be the development of skills, but also one of facilitating personal growth and professional development.

Background Research suggests that multidisciplinary rehabilitation is associated with improvement in physical functioning in HD. Aims To assess the effects of an intensive, multidisciplinary rehabilitation program for patients with early to mid-stage Huntington’s disease (HD), and to explore participants’ experiences with the programme. Methods/techniques A one year group-based multidisciplinary rehabilitation program for individuals with early to mid-stage HD was established, consisting of three in house stays of three weeks in a rehabilitation institution. Participants were members of groups of four to six, and the program involved intensive physical training, information and support related to speech, nutrition, activities of daily living and cognitive function. Participants were individually assessed and a tailored rehabilitation plan was made for each participant. Results Out of 37 participants, 31 (83.8%) completed the program as planned. Assessments of participants 3 months after the final stay found improved balance, gait function, physical quality of life and reduced symptoms of depression and anxiety in participants compared with scores at baseline. In qualitative interviews the social benefits of group “comradery” was reported as an important motivation, in addition to experiencing measurable improvements and having a contact person assigned to each participant. Conclusions Intensive multidisciplinary rehabilitation for individuals with early to mid-stage HD is feasible and associated with improved function and physical quality of life. An individually tailored plan, a contact person for each participant, a peer group approach and communication between institutions and primary health professionals could be mediators of clinical outcomes. Randomised controlled trials are needed to study effects of various interventions, as well as cost-benefit analysis of interventions. Future research should aim at studying effects of specific components in programs.

Introduction Patients with Huntington’s disease (HD) develop cognitive impairment. While cognitive dysfunction has been found to negatively affect health-related quality of life, studies have shown that cognitive aids can help to improve and maintain quality of life in other patient populations suffering cognitive dysfunction. Objectives To identify utilisation of cognitive aids in HD patients, and to assess whether there is a correlation between cognitive aids and quality of life. Methods Through the Oslo University Hospital and Vikersund Rehabilitation Centre all patients with a clinical diagnosis of HD living in the South-East region of Norway have been invited to participate in the study. Currently 80 patients are included and 39 are being followed up. The UHDRS Total Functional Capacity and functional ability scales, and selected items of the Needs and Provision Complexity Scale, which determines met and unmet healthcare needs in patients with complex neurological disabilities, and EQ-5D, a patient self-report measurement for quality of life, are used. Demographic and patient characteristics, information about the use of cognitive aids are recorded. The clinical evaluation of the patients’ cognitive status, based on information from the patient and/or next of kin and healthcare professionals is made by the same trained raters. Results We are currently analysing the collected data, and results will be presented at the conference. Conclusion Results will give knowledge about the utilisation of cognitive aids in patients with HD, identify unmet needs for such aids, and study any correlations with quality of life. The results may inform stakeholders and clinicians when planning long-term management of HD patients.

Background In order to develop interventions and conduct studies which endeavour to improve the quality of the care provided and improve outcomes and wellbeing for individuals with HD and their families, it is crucial to establish and understand factors, structures and processes underpinning health and social care delivery at different clinics around the world. Aims In order to gain insight into variation in current service provision across clinics/Enroll-HD research sites worldwide this survey aims to: 1) Provide a descriptive overview of how services are currently organised and delivered, 2) map and categorise models of care and interdisciplinary working in HD. Methods All current and planned Enroll-HD sites (n = 190) were invited to participate in a structured cross-sectional survey questionnaire. To identify, define and categorise distinct models of care and service delivery, data collected will be critically evaluated using descriptive statistical methods to provide an overview of the sampled population and summarise key components of service organisation and provision. To provide further context to the data, additional free text items will be systematically analysed using qualitative methods (content analysis). Results A descriptive overview of inter-site and inter-country differences will be presented. Conclusion The results of this survey will provide the foundation for understanding the complexity of factors underpinning HD service delivery. The data will be used to inform development of studies within Enroll-HD to understand the determinants of good clinical care for different stages of HD.