Catalog of EQ-5D-3L Health-Related Quality-of-Life Scores for 199 Chronic Conditions and Health Risks in Denmark.

Background. Assessments of health-related quality of life (HRQoL) are essential in estimating quality-adjusted life-years. It is sometimes not feasible to collect primary HRQoL data, and reliable secondary sources are necessary. Current "off-the-shelf" HRQoL catalogs are based on older diagnosis classifications and include a limited number of diseases. This article aims to provide 1) a Danish EQ-5D-3L-based HRQoL catalog for 199 nationally representative chronic conditions based on ICD-10 codes and 2) a complementary model-based catalog controlling for age, sex, comorbidities, lifestyle, and health risks. Design. A total of 55,616 respondents from 3 national health survey samples were pooled and combined with 7 national registers containing patient-level information on diagnoses, health care activity, and sociodemographics. EQ-5D-3L data were converted to utility scores using the Danish EQ-5D-3L value set to estimate the mean utility for each chronic disease population. Adjusted limited dependent variable mixture models were estimated and used to provide a regression-based catalog of utilities/disutilities. Results. Diseases with the lowest mean EQ-5D score in the Danish population were systemic sclerosis (M34; score = 0.432), fibromyalgia (M797; score = 0.490), rheumatism (M790; score = 0.515), dementia (F00, G30; score = 0.546), posttraumatic stress syndrome (F431; score = 0.557), and systemic atrophies (G10-G14; score = 0.583. Based on the estimated models, the largest estimated disutilities were cystic fibrosis, cerebral palsy, depression, dorsalgia, sclerosis, and fibromyalgia. Lifestyle factors, including perceived stress, loneliness, and body mass index, were also significantly associated with low HRQoL. Conclusions. This study provides a comprehensive nationally representative catalog and a model-based catalog of EQ-5D-3L-based HRQoL scores for Denmark that can be used to describe aspects of disease burden and allocate resources within health care. Additional Stata programs are also provided to facilitate predictions in other populations. Highlights: A Danish national representative catalog of health-related quality-of-life scores for 199 chronic conditions is presented, which provides population estimates for chronic conditions subgroups that can be used for health economic evaluation.Two separate regression models of EQ-5D-3L utility scores with different sets of control variables are estimated to allow researchers to adjust for differences in the composition of the subgroups and provide a tool that can be used in other settings.Results indicate that health-related quality of life varies across disease groups but is lowest for renal disease, mental and behavioral disorders, benign neoplasms and diseases of the blood, digestive systems, and nervous systems.Health risks and lifestyle factors such as perceived stress, loneliness, and a large body mass index are highly correlated with health-related quality of life, and, in many cases, the correlation is higher than with individual diseases.

The Danish-American Research Exchange (DARE): a cross-sectional study of a binational research education program.

BACKGROUND: Most medical educational programs emphasize clinical observation or clinical skill acquisition, fewer focus upon research. The Danish-American Research Exchange (DARE) program, sponsored by the Lundbeck Foundation, is unique in that the medical student initiates biomedical research collaboration between Danish and US medical institutions. To achieve this, Danish medical students (DARE students) conduct binational mentored research projects while based in the United States for 10 months. In addition, DARE students are introduced to interdisciplinary thinking about how to develop ultra-low-cost healthcare interventions through the '$10 Challenge'. METHODS: We conducted a cross-sectional study of DARE alumni over five consecutive years (2015-2020, n = 24). Research metrics included completion of a research project, primary authorship, and co-authorship of publications. The number of publications, prior to and after the DARE program were enumerated. For the first four cohorts, graduation from medical school and acceptance or intention to enter a joint MD-PhD program also were assessed. Two focus groups were conducted using constructivist grounded theory. Discussions were transcribed, redacted, and coded using Dedoose software. RESULTS: DARE Medical students were 31.2 years (range 24-35), the majority were women (67%;16/24). The majority (17/24;71%) completed a first author publication in a peer-reviewed journal with a median of 3.9 per DARE alumnus. DARE alumnus reported increased proficiency in biostatistics, epidemiology, coding and public speaking as well as stronger research qualities in creativity, critical thinking, comfort in approaching scientist in both the US and Denmark (p < 0.001 for all). Qualitative key themes included: increased confidence, a deepening of research inquiry and linkage to a research network. CONCLUSIONS: Preliminarily, this study suggests that medical students can initiate binational collaboration in medicine. Benefits include research productivity, intention to pursue academic medical careers, as well as positive impacts on motivation. This medical student-initiated research model lays the groundwork for using this model across other country pairs to promote binational collaboration.

Physical child abuse demands increased awareness during health and socioeconomic crises like COVID-19.

Background and purpose - Physical abuse of children, i.e., nonaccidental injury (NAI) including abusive head trauma (AHT) is experienced by up to 20% of children; however, only 0.1% are diagnosed. Healthcare professionals issue less than 20% of all reports suspecting NAI to the responsible authorities. Insufficient knowledge concerning NAI may partly explain this low percentage. The risk of NAI is heightened during health and socioeconomic crises such as COVID-19 and thus demands increased awareness. This review provides an overview and educational material on NAI and its clinical presentation.Methods - We combined a literature review with expert opinions of the senior authors into an educational paper aiming to help clinicians to recognize NAI and act appropriately by referral to multidisciplinary child protection teams and local authorities.Results - Despite the increased risk of NAI during the current COVID-19 crisis, the number of reports suspecting NAI decreased by 42% during the lockdown of the Danish society. Healthcare professionals filed only 17% of all reports of suspected child abuse in 2016.Interpretation - The key to recognizing and suspecting NAI upon clinical presentation is to be aware of inconsistencies in the medical history and suspicious findings on physical and paraclinical examination. During health and socioeconomic crises the incidence of NAI is likely to peak. Recognition of NAI, adequate handling by referral to child protection teams, and reporting to local authorities are of paramount importance to prevent mortality and physical and mental morbidity.

The construct validity of the Child Health Utility 9D-DK instrument.

BACKGROUND: Relative to their application with adults there is currently little information about the application of preference-based health-related quality of life (HRQL) instruments among populations of young people. The Child Health Utility 9D (CHU9D) is a paediatric-specific generic preference-based HRQL instrument, recently translated and linguistically validated into Danish (CHU9D-DK). The purpose of this study was to investigate the construct validity of the CHU9D-DK in a sample of Danish high school students. METHODS: All students attending a Danish High School were invited to participate in a web-based survey in January 2018 (N = 272). The survey included the CHU9D-DK, the young adult version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL), self-reported health status, presence/absence of disability/chronic diseases, life satisfaction, and socio-economic questions. CHU9D-DK utility scores were generated by employing the two scoring algorithms developed from adults in the UK and adolescents in Australia, respectively. Internal consistency, reliability and construct validity of the CHU9D-DK instrument were investigated. RESULTS: Two hundred and twenty-eight (84%) students consented to participate and completed the survey. The mean ± (standard deviation) values of the CHU9D-DK utilities were 0.84 (0.11) when the UK adult algorithm was applied and 0.70 (0.22), when the Australian adolescent algorithm was applied. The mean PedsQL score was 82.32 (13.14). The CHU9D-DK showed good internal consistency reliability (Cronbach's alpha = 0.803). Higher levels of health status and life satisfaction were significantly associated with higher CHU9D-DK utility scores regardless of which scoring algorithm was applied (p-values < 0.001). Students living with a disability/chronic disease exhibited significantly lower utility scores relative to their healthy peers (p-values < 0.05). Higher socio-economic status (approximated by financial situation and frequency of family vacations) was also associated with higher utility scores (p-values < 0.005). CONCLUSION: The CHU9D-DK demonstrated good psychometric performance overall and shows potential as a valid and reliable instrument for assessing the HRQL of Danish young people. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT03391999, Registered 15 October 2017.

Exclusion and inclusion of parents of hospitalized children in Norway in the period 1877-2017.

BACKGROUND: Today, Norwegian parents have the right to stay with their children when they are in hospital. This right is relatively new. The purpose of this article is to examine the nursing profession's ideas on how parents should be included/excluded when their children are in hospital, and to examine the social and ideological conditions that made the nursing profession's ideas on inclusion/exclusion practices possible. METHODS: The analyses are done in the tradition of the French philosopher Michel Foucault's writings on how different kinds of knowledge have been used to discipline citizens. Such studies include analyses of descriptive and normative material and analyses of the ideological and social conditions that made the practices possible. The analyses are based on Norwegian textbooks on nursing. RESULTS: Parents are rarely mentioned in Norwegian nursing textbooks from the period 1877-1940, and they are not present in photos from hospitals. The exclusion of parents may be due to the absence of welfare services and the fear of parents transmitting diseases from the hospitals to the general population.The first Norwegian nursing textbook that argued for the importance of letting parents visit their children in hospital was published in 1941. In 1968, nursing textbooks started to argue for parents' participation in the care. Since 1987, nursing textbooks have advocated full parental participation. The inclusion of parents was in accordance with humanistic ideology. The inclusion of parents occurred in a period of great nursing shortage. In this situation, it would have been of interest to entrust as much as possible of the nurse's work to the family. CONCLUSIONS: Our conclusion is that ideas break through when they are in line with social conditions. From 1877 to 1940 social and economic conditions made it difficult for parents to be with their children in hospital, and hygiene ideology/theory contributed to legitimization of the exclusion of the parents in the care. During the period 1941-2017 it has been economically advantageous for the hospitals that parents care for their children. Ideas on the vulnerable child and self-help ideology have contributed to legitimization of the inclusion of the parents.

The traditional care culture and the Western nursing culture in Cameroon.

AIM: This study explored the relationship between the traditional care culture and the Western nursing culture. BACKGROUND: Cameroonians are highly dependent on seeking medical aid from traditional healers and medicines, despite the emergence of contemporary health practices that are provided by Western nursing care. METHODS: This study was conducted based on Bourdieu's praxeological approach using observational and descriptional research, and interviews. RESULTS: While the traditional care culture and the Western nursing culture practices coexist, there are also conflicts and challenges. The people of Cameroon prefer the availability of both health care forms because they are provided with options in terms of the care they are offered and can afford. CONCLUSION: Traditional care culture practices can be combined with the contemporary practices of Western nursing care. Both health care forms have advantages, and when integrated, they can contribute to providing more effective health care practices that can improve health care services in Cameroon.

Novel TRPV4 variant causes a severe form of metatropic dysplasia.

We present a girl born with a frontal bossing, short neck, bell-shaped thorax, short limbs with prominent joints, and a tail-like coccygeal appendage. Genetic screening of TRPV4 identified a novel de novo heterozygous missense variant. We believe the variant causes the severe form of metatropic dysplasia in this patient.

Measuring Health-Related Quality of Life in Adolescent Populations: An Empirical Comparison of the CHU9D and the PedsQLTM 4.0 Short Form 15.

OBJECTIVE: The aim was to conduct an empirical assessment of the measurement properties of the preference-based Child Health Utility 9D (CHU9D) versus the non-preference-based Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (referred to as 'PedsQL') in an Australian community-based sample of adolescents. METHODS: An online survey including the CHU9D, the PedsQL, a self-reported general health question, and socio-demographic questions was administered to adolescents (aged 15-17 years). Descriptive summary statistics and psychometric analyses were conducted to assess levels of agreement and convergent validity between the instruments. RESULTS: A total of 775 adolescents (mean ± SD age 15.8 ± 0.8 years) completed the survey. The mean ± SD scores of the CHU9D and the PedsQL were 0.72 ± 0.22 and 72.86 ± 16.56, respectively. For both instruments, there were significant differences in health-related quality of life scores according to self-reported health status and socio-economic status. Overall, both the Spearman's correlation (r = 0.63) and the intraclass correlation coefficient (0.77) suggested a high level of agreement. CONCLUSIONS: The findings indicate good levels of agreement overall between the CHU9D and PedsQL and provide further support for the validity of the application of the CHU9D in the economic evaluation of adolescent health care treatment and service programmes.

Natural history of pain associated with melanoma surgery.

INTRODUCTION: After excision of a primary malignant melanoma (MM), treatment of stage IB or higher MM consists of sentinel lymph node biopsy (SLNB). If malignant cells are identified, a complete lymph node dissection (CLND) can be performed. OBJECTIVE: To determine the natural history of pain and sensory changes after MM surgery. METHODS: We prospectively followed 39 patients (29 SLNB-only, 2 CLND-only, and 8 CLND preceded by SLNB) from before inguinal or axillary surgery through 6 months after surgery on measures of pain intensity, sensory symptoms, allodynia, and questionnaires of anxiety, depression, and catastrophizing. RESULTS: No patient had pain preoperatively. Ten days after surgery, 35% had surgical site pain after SLNB-only compared with 90% after CLND (P < 0.003); clinically meaningful pain (Visual Analogue Scale ≥ 30 mm/100 mm) was reported by 3% of patients after SLNB-only compared with 40% after CLND (P < 0.001). At 6 months, all SLNB-only patients were pain-free. By contrast, 4 of 7 in the SLNB + CLND group still had pain (P < 0.002). At 6 months, symptoms of altered sensation or numbness were reported by 32% and 42% of SLNB-only patients, and by 67% and 67% of patients undergoing CLND surgery (both P > 0.05). CONCLUSION: Acute pain is more common after CLND surgery. Undergoing SLNB followed by more invasive CLND surgery may increase the likelihood of pain at 6 months. Persistent sensory symptoms typical of those associated with nerve injury are more common after CLND. Surgery for MM is a good model for studying the natural history of postsurgical pain and sensory changes.

Confirmation of CAGSSS syndrome as a distinct entity in a Danish patient with a novel homozygous mutation in IARS2.

Since the original description of the IARS2-related cataracts, growth hormone deficiency, sensory neuropathy, sensorineural hearing loss, skeletal dysplasia syndrome (CAGSSS; OMIM 616007) in an extended consanguineous family of French-Canadian descent, no further patients have been reported. IARS2 (OMIM 612801) encodes the mitochondrial isoleucine-tRNA synthetase which belongs to the class-I aminoacyl-tRNA synthetase family, and has been implicated in CAGSSS and a form of Leigh syndrome. Here, we report on a female Danish patient with a novel homozygous IARS2 mutation, p.Gly874Arg, who presented at birth with bilateral hip dislocation and short stature. At 3 months, additional dysmorphic features were noted and at 18 months her radiographic skeletal abnormalities were suggestive of an underlying spondyloepimetaphyseal dysplasia (SEMD). Retrospective analysis of the neonatal radiographs confirmed that the skeletal changes were present at birth. It was only with time that several of the other manifestations of the CAGSSS emerged, namely, cataracts, peripheral neuropathy, and hearing loss. Growth hormone deficiency has not (yet) manifested. We present her clinical features and particularly highlight her skeletal findings, which confirm the presence of a primary SEMD skeletal dysplasia in a growing list of mitochondrial-related disorders including CAGSSS, CODAS, EVEN-PLUS, and X-linked SEMD-MR syndromes.

The follicle-stimulating hormone (FSH) and luteinizing hormone (LH) response to a gonadotropin-releasing hormone analogue test in healthy prepubertal girls aged 10 months to 6 years.

OBJECTIVE: Premature thelarche and precocious puberty are frequently diagnosed in girls even below 6 years of age and may be difficult to differentiate in the early stages. A GnRH test is often included in the diagnostic work-up, although interpretation of the GnRH test in girls below 6 years of age is challenging, as no reference interval exists for this age group. The objective is to determine the normal FSH and LH response to a GnRH test in healthy prepubertal girls below 6 years of age. DESIGN AND METHODS: A standardized GnRH test, baseline reproductive hormones, clinical evaluation and bone age were determined in all participants. Forty-eight healthy normal-weight girls aged 3.5 ± 0.2 years (range: 0.8-5.9 years) were included. Serum concentrations of LH and FSH were measured before and 30 min after the gonadorelin injection. RESULTS: The 30-min LH responses (mean ± 2 s.d.) were 5.2 ± 4.0 and 2.9 ± 2.5 IU/L and the FSH responses were 23.3 ± 16.2 and 14.5 ± 10.3 IU/L in girls aged 0.8-3.0 years and 3.0-5.9 years respectively. This corresponds to upper cut-off limits for LH of 9.2 IU/L (<3 years) and 5.3 IU/L (3-6 years). The stimulated LH/FSH ratio was 0.23 ± 0.19 (range 0.06-0.43) and did not correlate with age. CONCLUSIONS: We found that LH increases up to 9.2 IU/L during GnRH test in healthy normal-weight girls below 3 years of age and that the stimulated LH/FSH ratio did not exceed 0.43. Our findings have important implications for appropriate diagnosis of central precocious puberty in girls below 6 years of age.

Economic evaluation of an implementation strategy for the management of low back pain in general practice.

In connection with the publication of a clinical practice guideline on the management of low back pain (LBP) in general practice in Denmark, a cluster randomised controlled trial was conducted. In this trial, a multifaceted guideline implementation strategy to improve general practitioners' treatment of patients with LBP was compared with a usual implementation strategy. The aim was to determine whether the multifaceted strategy was cost effective, as compared with the usual implementation strategy. The economic evaluation was conducted as a cost-utility analysis where cost collected from a societal perspective and quality-adjusted life years were used as outcome measures. The analysis was conducted as a within-trial analysis with a 12-month time horizon consistent with the follow-up period of the clinical trial. To adjust for a priori selected covariates, generalised linear models with a gamma family were used to estimate incremental costs and quality-adjusted life years. Furthermore, both deterministic and probabilistic sensitivity analyses were conducted. Results showed that costs associated with primary health care were higher, whereas secondary health care costs were lower for the intervention group when compared with the control group. When adjusting for covariates, the intervention was less costly, and there was no significant difference in effect between the 2 groups. Sensitivity analyses showed that results were sensitive to uncertainty. In conclusion, the multifaceted implementation strategy was cost saving when compared with the usual strategy for implementing LBP clinical practice guidelines in general practice. Furthermore, there was no significant difference in effect, and the estimate was sensitive to uncertainty.

Mapping CHU9D Utility Scores from the PedsQLTM 4.0 SF-15.

BACKGROUND: The Pediatric Quality of Life Inventory™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL) and the Child Health Utility-9 Dimensions (CHU9D) are two generic instruments designed to measure health-related quality of life in children and adolescents in the general population and paediatric patient groups living with specific health conditions. Although the PedsQL is widely used among paediatric patient populations, presently it is not possible to directly use the scores from the instrument to calculate quality-adjusted life-years (QALYs) for application in economic evaluation because it produces summary scores which are not preference-based. OBJECTIVE: This paper examines different econometric mapping techniques for estimating CHU9D utility scores from the PedsQL for the purpose of calculating QALYs for cost-utility analysis. METHODS: The PedsQL and the CHU9D were completed by a community sample of 755 Australian adolescents aged 15-17 years. Seven regression models were estimated: ordinary least squares estimator, generalised linear model, robust MM estimator, multivariate factorial polynomial estimator, beta-binomial estimator, finite mixture model and multinomial logistic model. The mean absolute error (MAE) and the mean squared error (MSE) were used to assess predictive ability of the models. RESULTS: The MM estimator with stepwise-selected PedsQL dimension scores as explanatory variables had the best predictive accuracy using MAE and the equivalent beta-binomial model had the best predictive accuracy using MSE. CONCLUSIONS: Our mapping algorithm facilitates the estimation of health-state utilities for use within economic evaluations where only PedsQL data is available and is suitable for use in community-based adolescents aged 15-17 years. Applicability of the algorithm in younger populations should be assessed in further research.

A multifaceted implementation strategy versus passive implementation of low back pain guidelines in general practice: a cluster randomised controlled trial.

BACKGROUND: Guidelines are often slowly adapted into clinical practice. However, actively supporting healthcare professionals in evidence-based treatment may speed up guideline implementation. Danish low back pain (LBP) guidelines focus on primary care treatment of LBP, to reduce referrals from primary care to secondary care. The primary aim of this project was to reduce secondary care referral within 12 weeks by a multifaceted implementation strategy (MuIS). METHODS: In a cluster randomised design, 189 general practices from the North Denmark Region were invited to participate. Practices were randomised (1:1) and stratified by practice size to MuIS (28 practices) or a passive implementation strategy (PaIS; 32 practices). Included were patients with LBP aged 18 to 65 years who were able to complete questionnaires, had no serious underlying pathology, and were not pregnant. We developed a MuIS including outreach visits, quality reports, and the STarT Back Tool for subgrouping patients with LBP. Both groups were offered the usual dissemination of guidelines, guideline-concordant structuring of the medical record, and a new referral opportunity for patients with psycho-social problems. In an intention-to-treat analysis, the primary and secondary outcomes pertained to the patient, and a cost-effectiveness analysis was performed from a healthcare sector perspective. Patients and the assessment of outcomes were blinded. Practices and caregivers delivering the interventions were not blinded. RESULTS: Between January 2013 and July 2014, 60 practices were included, of which 54 practices (28 MuIS, 26 PaIS) included 1101 patients (539 MuIS, 562 PaIS). Follow-up data for the primary outcome were available on 100 % of these patients. Twenty-seven patients (5.0 %) in the MuIS group were referred to secondary care vs. 59 patients (10.5 %) in the PaIS group. The adjusted odds ratio (AOR) was 0.52 [95 % CI 0.30 to 0.90; p = 0.020]. The MuIS was cost-saving £-93.20 (£406.51 vs. £499.71 per patient) after 12 weeks. Conversely, the MuIS resulted in less satisfied patients after 52 weeks (AOR 0.50 [95 % CI 0.31 to 0.81; p = 0.004]). CONCLUSIONS: Using a MuIS changed general practice referral behaviour and was cost effective, but patients in the MuIS group were less satisfied. This study supports the application of a MuIS when implementing guidelines. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01699256.

Systematic review of the cost-effectiveness of implementing guidelines on low back pain management in primary care: is transferability to other countries possible?

OBJECTIVE: The primary aim is to identify, summarise and quality assess the available literature on the cost-effectiveness of implementing low back pain guidelines in primary care. The secondary aim is to assess the transferability of the results to determine whether the identified studies can be included in a comparison with a Danish implementation study to establish which strategy procures most value for money. DESIGN: Systematic review. DATA SOURCES: The search was conducted in Embase, PubMed, Cochrane Library, NHS Economic Evaluation Database, Scopus, CINAHL and EconLit. No restrictions were made concerning language, year of publication or publication type. The bibliographies of the included studies were searched for any studies not captured in the literature search. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: To be included, a study must be: (1) based on a randomised controlled trial comparing implementation strategies, (2) the guideline must concern treatment of low back pain in primary care and (3) the economic evaluation should contain primary data on cost and cost-effectiveness. RESULTS: The title and abstract were assessed for 308 studies; of these, three studies were found eligible for inclusion. The Consensus Health Economic Criteria (CHEC) list showed that the 3 studies were of moderate methodological quality while application of Welte's model showed that cost results from two studies could, with adjustments, be transferred to a Danish setting. It was questionable whether the associated effects could be transferred. CONCLUSIONS: Despite the resemblance of the implementation strategies, the 3 studies report conflicting results on cost-effectiveness. This review showed that transferring the results from the identified studies is not straightforward and underlines the importance of transparent reporting. Future research should focus on transferability of effects, for example, development of a supplement to Welte's model.

Catalog of 199 register-based definitions of chronic conditions.

INTRODUCTION: The aim of the current study was to present and discuss a broad range of register-based definitions of chronic conditions for use in register research, as well as the challenges and pitfalls when defining chronic conditions by the use of registers. MATERIALS AND METHODS: The definitions were defined based on information from nationwide Danish public healthcare registers. Medical and epidemiological specialists identified and grouped relevant diagnosis codes that covered chronic conditions, using the International Classification System version 10 (ICD-10). Where relevant, prescription and other healthcare data were also used to define the chronic conditions. RESULTS: We identified 199 chronic conditions and subgroups, which were divided into four groups according to a medical judgment of the expected duration of the conditions, as follows. Category I: Stationary to progressive conditions (maximum register inclusion time of diagnosis since the start of the register in 1994). Category II: Stationary to diminishing conditions (10 years of register inclusion after time of diagnosis). Category III: Diminishing conditions (5 years of register inclusion after time of diagnosis). Category IV: Borderline conditions (2 years of register inclusion time following diagnosis). The conditions were primarily defined using hospital discharge diagnoses; however, for 35 conditions, including common conditions such as diabetes, chronic obstructive lung disease and allergy, more complex definitions were proposed based on record linkage between multiple registers, including registers of prescribed drugs and use of general practitioners' services. CONCLUSIONS THIS STUDY PROVIDED A CATALOG OF REGISTER-BASED DEFINITIONS FOR CHRONIC CONDITIONS FOR USE IN HEALTHCARE PLANNING AND RESEARCH, WHICH IS, TO THE AUTHORS' KNOWLEDGE, THE LARGEST CURRENTLY COMPILED IN A SINGLE STUDY.

Crucial dimensions constituting dignity experience in persons living with dementia.

Dignity is seen as an essential need, fundamental right, and inherent quality of each human being. There is however, a need for increased knowledge on crucial dimensions constituting dignity experience in persons living with dementia. This study explored personal dimensions of life which persons with dementia perceived crucial for experiencing dignity in their daily lives. Based on the findings of eight empirical sub-dimensions, three main dimensions crucial for constituting dignity experience, were identified through hermeneutical interpretation: A historical dignity-dimension, acknowledging one's own life-projects and life-history; an intrapersonal dignity-dimension, recognizing one's own human worth, and living according to internal values; and an interpersonal dignity-dimension, experiencing being part of a caring and confirming communion. Knowledge of dignity preservation should be a crucial foundation for future dementia care.

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

INTRODUCTION: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice. MATERIAL AND METHODS: All members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392). RESULTS: The unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41-0.53] compared to a population mean of 0.85 [0.84-0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc. CONCLUSION: The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.