Determinants of life satisfaction in adolescents with congenital or acquired heart disease: a nationwide cross-sectional study.

Background: We aimed to investigate how self-reported physical and cognitive limitations (challenges), self-efficacy, and social support interacted with life satisfaction in adolescents and young adults with congenital heart disease (CHD) or acquired heart disease, among whom life satisfaction may be impaired.

Methods: "Adolescence with Heart Disease" was a cross-sectional, nationwide survey of patients with CHD or early acquired heart disease aged 15-25. Structural equation modeling was used to test the implied latent variable mediation model between the main outcome of interest (life satisfaction) and challenges, social support, and self-efficacy.

The risk of type 2-diabetes among persons with intellectual disability: a Danish population-based matched cohort study.

Background: Previous research shows that obesity, unhealthy eating, physical inactivity and a high use of psychotropic medications are prevalent among persons with intellectual disability (ID), which might increase the risk of type 2-diabetes (T2DM). This study aims to investigate: (1) whether persons with ID have an increased risk of T2DM compared with an age- and sex-matched reference group and (2) differences in T2DM risk by sex, birth year, ID inclusion diagnosis and ID severity.

Methods: This study is a nationwide cohort study, including 65 293 persons with ID and 659 723 persons in an age- and sex-matched reference group without ID.

Potentially avoidable mortality among adults with intellectual disability.

Persons with intellectual disabilities (ID) face pronounced health disparities. The aim of this study was to describe premature mortality by causes of death and avoidable mortality among persons with ID compared to the general Danish population. This study is based on a Danish nationwide cohort of adults (aged 18-74 years) with ID (n = 57 663) and an age- and sex-matched reference cohort (n = 607 097) which was established by linkage between several registers.

Radiological follow-up of osteonecrosis lesions in children and adolescents with Hodgkin lymphoma.

Osteonecrosis (ON) is a common complication of glucocorticoid-based Hodgkin lymphoma (HL) treatment, but the natural evolution and prognosis of ON lesions remain poorly understood. We describe the radiological evolution of ON lesions identified in a Nordic population-based cohort of paediatric HL patients. Magnetic resonance images of suspected ON lesions were centrally reviewed to confirm ON diagnosis and grade the ON lesions according to the Niinimäki classification.

Heart failure patients' perspectives on treatment outcomes and unmet medical needs: A qualitative preference study.

Aims: Decision-makers still predominantly focus on the perspective of non-patient stakeholders, which may deviate from the unique perspective of heart failure (HF) patients. To enhance patient-centred decision-making, there is a need for more patient-based evidence derived directly from the patients themselves. Hence, this study aimed to understand (i) HF patients' unmet medical needs and preferred treatment outcomes; (ii) patients' risk tolerance; and (iii) their information needs, uncertainties and satisfaction towards HF treatment.

Low Level of Well-being in Young People With Physical-Mental Multimorbidity: A Population-Based Study.

Purpose: We aimed to examine whether wellbeing, health behavior, and youth life among young people (YP) with co-occurrence of physical-mental conditions, that is, multimorbidity differ from YP with exclusively physical or mental conditions.

Methods: The population included 3,671 YP reported as having a physical or/and mental condition from a Danish nationwide school-based survey (aged 14-26 years). Wellbeing was measured by the five-item World Health Organization Well-Being Index and life satisfaction by the Cantril Ladder.

CT doses based on clinical indications. New national DRL's in Iceland.

A diagnostic reference level (DRL) is an investigation level to use in the optimization of a medical exposure using ionizing radiation. The aim of this project was to gather dose data from computed tomography (CT) studies in Iceland with the purpose of updating existing national DRL and proposing DRLs based on clinical indications. Dose data (total dose length product (DLP) and CT dose index) were retrospectively collected from all CT scanners in Iceland for 50 patients for all common CT studies.

Mortality patterns in a Danish nationwide cohort of persons with intellectual disabilities.

Mortality disparities among persons with intellectual disability are important to guide health-care practices. The objective was to evaluate mortality patterns of persons with intellectual disability in a nationwide study from 1976 to 2020. This study establishes a Danish nationwide cohort of persons with intellectual disability and age- and sex-matched reference cohort through linkage between several registers.

Breast Cancer Screening Among Women With Intellectual Disability in Denmark.

Importance: Breast cancer-specific mortality is increased among women with intellectual disability (ID), and knowledge about participation in breast cancer screening in this group is needed.

Objective: To examine participation in the Danish national breast cancer screening program among women with ID compared with women without ID.

Design, Setting, And Participants: This dynamic population-based cohort study assessed participation in the Danish national breast cancer screening program initiated in 2007, targeting women aged 50 to 69 years with a screening interval of 2 years.

Chronic health conditions and school experience in school-aged children in 19 European countries.

This study investigates chronic conditions (CC) prevalence among children in mainstream schools, their school experience and life satisfaction in Europe. Data were collected from the 2017/2018 HBSC survey, a cross-national study using self-reported questionnaires administered in classrooms. Nationally representative samples of children aged 11, 13, and 15 years in mainstream schools from 19 European countries (n = 104,812) were used.

Examining patient and professional perspectives in the UK for gene therapy in haemophilia.

Introduction: With the development of gene therapy for people with haemophilia (PWH), it is important to understand how people impacted by haemophilia (PIH) and clinicians prioritise haemophilia treatment attributes to support informed treatment decisions.

Objective: To examine the treatment attribute preferences of PIH and clinical experts in the United Kingdom (UK) and to develop a profile of gene therapy characteristics fit for use in future discrete choice experiments (DCEs).

Methods: Semi-structured interviews were conducted with PIH (n = 14) and clinical experts (n = 6) who ranked pre-defined treatment attributes by importance.

Parental Illness and Life Satisfaction among Young People: A Cross-Sectional Study of the Importance of School Factors.

Background: The aim of this study was to examine the relationship between parental illness and life satisfaction among Danish adolescents and the potential modifying effect of positive school experiences. Moreover, we describe the use of student counsellor services among adolescents with and without ill parents.

Methods: Data included 9565 adolescents primarily aged 13-19 years, who participated in the cross-sectional Well-being Despite Study.

Heart disease among Greenlandic children and young adults: a nationwide cohort study.

Background: The incidences of heart disease (HD) and congenital heart disease (CHD) among Inuit in Greenland (GL) and Denmark (DK) are unknown. This study aims to estimate incidence rates (IRs) of HD and CHD among the young Inuit populations in Greenland and Denmark compared with rates among young non-Inuit populations in the same countries.

Methods: A register-based nationwide cohort including all individuals living in Greenland and Denmark from birth to age <40 years through 1989-2014 was formed.

Study Protocol for Evaluation of an Extended Maintenance Intervention on Life Satisfaction and BMI Among 7-14-Year-Old Children Following a Stay at a Residential Health Camp in Denmark.

It is challenging to maintain effects of public health interventions. For residential health camps benefits often disappear as the child returns home. Furthermore, long-term effects are often not measured or reported.

Patient preferences for gene therapy in haemophilia: Results from the PAVING threshold technique survey.

Objectives: The aim of the Patient preferences to Assess Value IN Gene therapies (PAVING) study was to investigate trade-offs that adult Belgian people with haemophilia (PWH) A and B are willing to make when choosing between prophylactic factor replacement therapy (PFRT) and gene therapy.

Methods: The threshold technique was used to quantify the minimum acceptable benefit (MAB) of a switch from PFRT to gene therapy in terms of 'Annual bleeding rate' (ABR), 'Chance to stop prophylaxis' (STOP), and 'Quality of life' (QOL). The design was supported by stakeholder involvement and included an educational tool on gene therapy.

Why Do Some Adolescents Manage Despite Parental Illness? Identifying Promotive Factors.

Purpose: This study aimed to examine the association between social support, leisure time, school experience, and well-being among adolescents with an ill parent. Moreover, we explored the cumulative effect of promotive factors in relation to well-being.

Methods: The population included a subsample of 676 students reporting serious or chronic parental illness, selected from a nationwide Danish survey, the Well-being Despite Study.

Identifying and Characterizing Children of Parents with a Serious Illness Using Survey and Register Data.

Purpose: To estimate the prevalence and characterize children and adolescents aged 0-21 years with a physically or mentally ill parent based on registers. Further, to explore the use of register and survey data to identify parental serious illness.

Methods: The study is based on: 1) a 20% register sample of children and adolescents aged 0-21 in 2014; and 2) survey data from the Danish Youth Profile 2014 including 63,437 youth education students linked to registers.

Patient Preferences to Assess Value IN Gene Therapies: Protocol Development for the PAVING Study in Hemophilia.

Gene therapies are innovative therapies that are increasingly being developed. However, health technology assessment (HTA) and payer decision making on these therapies is impeded by uncertainties, especially regarding long-term outcomes. Through measuring patient preferences regarding gene therapies, the importance of unique elements that go beyond health gain can be quantified and inform value assessments.

From questionnaire to practical application: A quality of life profile for populations with diverse disabilities.

Aims: Existing quality of life questionnaires are either disease specific or generic in their assessment of themes which are perceived important to the quality of life in populations with disabilities. To be able to improve quality of life in a population with diverse disabilities there was a need for a cross-disability instrument. The Electronic Quality of Life (EQOL)-questionnaire was developed to meet this need.

Barriers and Opportunities for Implementation of Outcome-Based Spread Payments for High-Cost, One-Shot Curative Therapies.

The challenging market access of high-cost one-time curative therapies has inspired the development of alternative reimbursement structures, such as outcome-based spread payments, to mitigate their unaffordability and answer remaining uncertainties. This study aimed to provide a broad overview of barriers and possible opportunities for the practical implementation of outcome-based spread payments for the reimbursement of one-shot therapies in European healthcare systems. A systematic literature review was performed investigating published literature and publicly available documents to identify barriers and implementation opportunities for both spreading payments and for implementing outcome-based agreements.

Market access of gene therapies across Europe, USA, and Canada: challenges, trends, and solutions.

This review can inform gene therapy developers on challenges that can be encountered when seeking market access. Moreover, it provides an overview of trends among challenges and potential solutions.

Patient perspectives regarding gene therapy in haemophilia: Interviews from the PAVING study.

Introduction: Exploring patient perceptions regarding gene therapies may provide insights about their acceptability to patients.

Objective: To investigate opinions of people with haemophilia (PWH) regarding gene therapies. Moreover, this study aimed to identify patient-relevant attributes (treatment features) that influence PWH's treatment choices.

Study of correlation between the NAT2 phenotype and genotype status among Greenlandic Inuit.

-acetyltransferase 2 (NAT2) is the main enzyme metabolizing isoniazid and genotype-based treatment has been studied for years without becoming common practice. To investigate whether genotype-based isoniazid treatment is feasible in Greenland, we sequenced the coding sequence of and determined the NAT2 enzyme-activity by caffeine test. No additional genetic variants were identified in the coding sequence of , so that genotype status in 260 study participants could be assessed by a well-established 7-SNP panel.

Conceptualization, operationalization, and content validity of the EQOL-questionnaire measuring quality of life and participation for persons with disabilities.

Background: Measurement of quality of life demands thoroughly developed and validated instruments. The development steps from theory to concepts and from empirical data to items are sparsely described in the literature of questionnaire development. Furthermore, there seems to be a need for an instrument measuring quality of life and participation in a population with diverse disabilities.

Determinants of tuberculosis trends in six Indigenous populations of the USA, Canada, and Greenland from 1960 to 2014: a population-based study.

Background: Tuberculosis continues to disproportionately affect many Indigenous populations in the USA, Canada, and Greenland. We aimed to investigate whether population-based tuberculosis-specific interventions or changes in general health and socioeconomic indicators, or a combination of these factors, were associated with changes in tuberculosis incidence in these Indigenous populations.

Methods: For this population-based study we examined annual tuberculosis notification rates between 1960 and 2014 in six Indigenous populations of the USA, Canada, and Greenland (Inuit [Greenland], American Indian and Alaska Native [Alaska, USA], First Nations [Alberta, Canada], Cree of Eeyou Istchee [Quebec, Canada], Inuit of Nunavik [Quebec, Canada], and Inuit of Nunavut [Canada]), as well as the general population of Canada.