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. YP's health behavior and youth life were evaluated in seven domains: home, education, activities/friends, drugs, sleep, sexuality, and self-harm/suicidal thoughts, in accordance with the Home, Education and employment, Eating, Activities, Drugs, Sexuality, Suicide and depression, and Safety acronym. We performed descriptive statistics and multilevel logistic regression analysis. RESULTS: A total of 52% of YP with physical-mental multimorbidity reported a low level of wellbeing, compared to 27% of YP with physical conditions and 44% with mental conditions. YP with multimorbidity had significantly higher odds of reporting poor life satisfaction, compared to YP with exclusively physical or mental conditions. YP with multimorbidity had significantly higher odds for psychosocial challenges and health risk behavior, compared to YP with physical conditions, along with increased odds for loneliness (23.3%), self-harm (63.1%), and suicidal thoughts (54.2%), compared to YP with mental conditions. DISCUSSION: YP with physical-mental multimorbidity had higher odds for challenges and low wellbeing and life satisfaction. This is an especially vulnerable group and systematic screening for multimorbidity and psychosocial wellbeing is needed in all healthcare settings.

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. We established a cohort of 79,114 persons with intellectual disability. Standardized mortality ratios were increased for persons with intellectual disability, most pronounced among younger persons and among females. Life expectancies were markedly lower; among persons with intellectual disability 63.6 years among females and 59.8 years among males in 2016-2020 compared to 82.4 and 78.7 years among females and males in the reference cohort. Life expectancies decreased with severity of intellectual disability. This study reports the establishment of a nationwide Danish cohort of persons with intellectual disability.

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. In all, 6357 women with ID born between 1941 and 1967 and eligible for the screening program were identified in national registers. Women entered the study between January 1, 2007, and December 31, 2017. Subsequently, 273 women were excluded due to a history of carcinoma in situ or breast cancer, and 489 due to registration errors in registers. Each woman was individually age-matched with 10 women without ID (reference group). All women were followed up until March 31, 2021, or censoring (due to death, carcinoma in situ, or breast cancer). Data were analyzed from December 1, 2021, to June 31, 2022. Exposures: Intellectual disability was defined as being registered with an ID diagnosis or a diagnosis most likely leading to ID or residing at an institution for persons with ID. Main Outcomes and Measures: Participation in breast cancer screening (fully, partly, and never). Results: A total of 5595 women with ID and 49 423 age-matched women in the reference group were included in the analysis. Of these, 2747 women with ID (49%) and 24 723 in the reference group (50%) were 50 years of age at study entry; for those older than 50 years, the median age was 51 years (IQR, 50-58 years) in both groups. In all, 1425 women with ID (25%) were fully screened according to guidelines for the Danish breast cancer screening program compared with 30 480 women in the reference group (62%). Women with ID had nearly 5 times higher odds of never being screened compared with the reference group (odds ratio, 4.90 [95% CI, 4.60-5.22]). In all, 2498 women with ID (45%) and 6573 in the reference group (13%) were never screened. The proportion of never-screened women increased with severity of ID, from 834 of 2287 (36%) among women with mild ID to 173 of 212 (82%) among women with profound ID. Conclusions and Relevance: The findings of this cohort study suggest that women with ID are markedly less likely to participate in breast cancer screening compared with women without ID. These findings further suggest a need for tailored guidelines and approaches for breast cancer screening in this group of women.

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. Multilevel logistic regression models including joint effect analyses were performed. RESULTS: Parental illness was strongly associated with life satisfaction. Negative school experiences were more frequent among adolescents with ill parents and strongly associated with low life satisfaction for all students. However, joint effect analyses did not show effect modification by school-related variables. The odds ratio of having talked to a student counsellor was highest for adolescents with multiple ill parents, compared to no ill parents. CONCLUSIONS: Parental illness is a strong predictor of low life satisfaction among adolescents; the impact depends on number of ill parents, whether parental illness is physical or mental, and their level of impairment. Positive school experiences were less frequent in adolescents of ill parents and did not counteract the effect of parental illness on life satisfaction.

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.

Background: 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. This paper presents the study protocol for an evaluation of an extended maintenance intervention offered to children who have completed a 10-week residential health camp at one of the five Danish Christmas Seal Houses (DCSH). The target group of DSCH is 7-14-year-olds with social, mental, and/or overweight issues and the overall aim of the camp is to increase life satisfaction and a healthy lifestyle. The primary aim of this study is to assess the effectiveness of the maintenance intervention on children's life satisfaction (primary outcome) and BMI Z-score (secondary outcome) 1 year after health camp. Methods: The extended maintenance intervention is developed by DCSH and delivered to each child and family individually by an intervention coordinator to help children maintain positive benefits of the health camp on life satisfaction and health behaviors after returning to their homes. Intervention activities target the child and the family. The effect will be tested in a quasi-experimental design: The intervention is offered to half of the children at one of the five DSCH (intervention group, N~144) while the other half and the children at the other four DSCH receive a standard maintenance intervention (control group, N~894). Children will complete questionnaires on life satisfaction measured by an adapted version of the Cantril ladder and height and weight prior to health camp, at the end of health camp, 3 months and 1 year after the end of health camp. To enable per protocol analysis and nuanced interpretation of effect estimates, we will monitor the implementation of the intervention by a process evaluation study among children, parents, and follow up coordinators using qualitative and quantitative methods. Discussion: We present a systematic approach to evaluating practice-based interventions in a research design. The study will provide new knowledge on the effectiveness of individualized maintenance interventions on long-term effects on life satisfaction and weight loss among children. Trial registration: Prospectively registered at Current Controlled Trials ISRCTN 13011465 https://www.isrctn.com/ISRCTN13011465.

Living with a disability: a qualitative study of associations between social relations, social participation and quality of life.

PURPOSE: We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40 years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation. MATERIALS AND METHODS: Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews and individual interviews were audiotaped, transcribed, and thematic data analysis was conducted. RESULTS: We identified caregiving, dependency, and understanding as essential for quality of life. Acceptance from society, discrimination and prejudice, and the ability to participate in society were also highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants. CONCLUSIONS: Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects for the quality of life of the individuals. Social relations were closely related to social participation, and the latter affected the quality of life of the participants. Social tactics were used to navigate social relations. Implications for rehabilitation We suggest to formalize the concept of social tactics and use it in patient education to enhance quality of life in individuals living with disabilities. People may accept and learn to cope with the impact of their disability, but how they maintain their social participation and social relations also impact on their quality of life. In their assessment, professionals working with individuals with disabilities should, therefore, give more priority to analyze the impact of social relations. When intervening, an effort to establish and maintain social relations should be considered along with psychological help, allocation of aids and economical support aiming to enhance quality of life and social participation among individuals with disabilities. When evaluating efforts to improve quality of life, it is important to investigate whether the intervention has improved the social relations.

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. The aim of this paper was to present and discuss the initial steps in the development of the Electronic Quality of Life questionnaire (EQOL). METHODS: The development of EQOL included six steps: 1) Establishing conceptual understanding; 2) Development of interview guides which build on the conceptual understanding; 3) Qualitative interviews of 55 participants (10-40 years old) with different types and severities of disabilities; 4) Conceptualization of domains identified in the qualitative data through thematic analysis; 5) Operationalization of the identified domains into items and; 6) Evaluation of content validity of the first version of the EQOL-measure. Content validity was examined by cognitive interviews with participants in the target group as well as by continuous feedback from an advisory board. RESULTS: We identified six domains (function and health, environment (physical and social), social network, wellbeing, occupation, and managing strategies) based on themes derived from the qualitative interviews and on conceptual discussions within the author group. These domains were incorporated in a conceptual model and items were generated to measure the content of each domain. Participants expressed satisfaction with EQOL but most participants felt that there were too many items. CONCLUSIONS: In total, 191 items were included in the questionnaire. Participants felt that the EQOL-questionnaire was relevant to their quality of life and participation. We have shown that it is possible to include quality of life and participation for people with various disabilities in one instrument. Although capturing less detail than a condition specific instrument, EQOL includes aspects perceived important for people with disabilities who are not included in general surveys. This is relevant when for example evaluating environmental adaptations and when comparing populations with various disabilities.

Health profile for Danish adults with activity limitation: a cross-sectional study.

BACKGROUND: Studies have indicated that people with disabilities die earlier and may experience a poorer health than the general population. This study investigated 31 factors related to health and well-being, health behaviour and social relations among Danish adults with activity limitation (AL). METHODS: This study was based on data from the Danish Health and Morbidity Survey (DHMS) 2013 where 25,000 men and women aged 16 years or older were selected randomly from the adult Danish population. A total of 14,265 individuals answered the self-administered questionnaire including 100 questions on health-related quality of life, health behaviour, morbidity, consequences of illness and social relations. Based on an international standard question on AL, 888 individuals (6%) were defined as having profound AL and 4180 (29%) as having some AL. Multiple logistic regression analyses were used to analyse the associations between activity limitation and 31 indicators of health. The results were presented as relative risks 95% confidence intervals. RESULTS: Twenty-eight of 31 indicators showed consistently poorer health and well-being, health behaviour and social relations among individuals with AL as compared to individuals without AL. The increased relative risks were in a range of 7-661% the risk among individuals without AL. An example is obesity where RR (95% CI) was 2.07 (1.82-2.37). Only contact with internet friends was significantly higher among individuals with AL as compared to individuals with no AL. There was no association between alcohol and AL and no association between fast food and some AL. CONCLUSION: Danish adults with AL experience a poorer health and well-being, and have an unhealthier lifestyle and poorer social relations than adults without AL. People with activity limitation should be prioritized in public health and efforts done to secure availability and flexibility of health care services and primary prevention programs. Policies should address accessibility, availability and affordability of health care and health behaviour among people with activity limitation.

Determinants of inclusive education of 8-12 year-old children with cerebral palsy in 9 European regions.

The principle of inclusive education has been increasingly recognised over recent decades and most countries officially support schooling of children with disabilities in mainstream settings. The SPARCLE study offers the opportunity to report on the schooling practices for children with cerebral palsy according to the nature and severity of their impairments and the schooling policy in European regions. The aim of this paper is to describe the type of schooling of children with cerebral palsy in various European regions after controlling for relevant individual factors. Children aged 8-12 years with cerebral palsy from 9 European regions and their families were interviewed. Our findings support the hypothesis that between-region variations in the type of schooling are still significant after adjustment for individual factors; and that motor function and intellectual ability have different effects on inclusion in mainstream school, depending on the region.

Lifetime costs of cerebral palsy.

This study quantified the lifetime costs of cerebral palsy (CP) in a register-based setting. It was the first study outside the US to assess the lifetime costs of CP. The lifetime costs attributable to CP were divided into three categories: health care costs, productivity costs, and social costs. The population analysed was retrieved from the Danish Cerebral Palsy Register, which covers the eastern part of the country and has registered about half of the Danish population of individuals with CP since 1950. For this study we analysed 2367 individuals with CP, who were born in 1930 to 2000 and were alive in 2000. The prevalence of CP in eastern Denmark was approximately 1.7 per 1000. Information on productivity and the use of health care was retrieved from registers. The lifetime cost of CP was about 860,000 euro for men and about 800,000 euro for women. The largest component was social care costs, particularly during childhood. A sensitivity analysis found that alterations in social care costs had a small effect, whereas lowering the discount rate from 5 to 3 per cent markedly increased total lifetime costs. Discounting decreases the value of costs in the future compared with the present. The high social care costs and productivity costs associated with CP point to a potential gain from labour market interventions that benefit individuals with CP.

Non-participation in preventive child health examinations at the general practitioner in Denmark: a register-based study.

OBJECTIVE: To examine demographic and socioeconomic characteristics of parents and children in families not participating in preventive child health examinations at the general practitioner in a society with free and easy access to healthcare. DESIGN: Population-covering register linkage study. SETTING: Denmark, 2002-2004. SUBJECTS: Two cohorts comprising all children born in Denmark between 1 July 1998 and 30 June 1999 (n =70 891) and in 2002 (n =65 995), respectively. The demographic and socioeconomic characteristics of these children and the adults living in the same household as these were identified through register linkage. MAIN OUTCOME MEASURES: Crude and mutually adjusted odds ratios for non-participation in scheduled preventive child health examinations at the GP (age 5 weeks, 5 months, 12 months, 4 years, and 5 years) according to child characteristics (sex, number of hospitalizations, and older siblings) and parental characteristics (age, educational level, attachment to labour market, ethnicity, household income, and number of adults in the household). RESULTS: Children of young and single parents were less likely to receive a preventive child health examination. Increased odds ratios for non-participation were found for children of parents outside the labour market, with low educational level, and especially for the combination of these. Non-participation increased with decreasing household income and with the number of older siblings. CONCLUSION: Despite the fact that Denmark has free and easy access to the GP, the utilization of preventive child health examinations is lower among the more deprived part of the population.

Parent-reported quality of life of children with cerebral palsy in Europe.

OBJECTIVE: The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy. METHODS: Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains. RESULTS: The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life. CONCLUSIONS: The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

Social integration of adults with cerebral palsy.

Social integration and independence is the ultimate goal of habilitation and social support for patients with cerebral palsy (CP). Having a partner and having children provide support for social integration of adults with or without a disability. We studied 416 participants with CP born between 1965 and 1970 (243 males, 173 females; mean age 32 y 2 mo [SD 2 y]; age range 29-35 y) and compared them with 2247 age-matched comparison individuals. Diagnostic subtypes of the 416 participants were: 31% hemiplegia, 49% diplegia, 11% tetraplegia, and 9% other types. The level of motor impairment, estimated in childhood, with regard to walking ability was 65% able to walk without assistance, 22% with assistance, and 12% not able to walk (for 1% of the participants their walking ability was not known). We found no sign of increased social integration over the past two or three decades in Denmark. Sixty-eight per cent lived independently, 13% lived with their parents, and 16% lived at an accommodation facility arranged by the county (institution). Twenty-eight per cent of the participants were cohabiting and 19% had children. The presence of epilepsy and the severity of physical or cognitive impairment as assessed in childhood predicted independent living and physical and cognitive impairment predicted cohabitation, but parents' socioeconomic position and region of living did not. Fifty-five percent of the participants, compared with 4% of the comparison group, had no competitive employment, cohabiting partner, or biological children. The remaining participants had at least one of these types of social contact, but this more optimally socially integrated half of the participants only combined all three types of social contact half as often as the comparison group. This could be due to cognitive difficulties or premature ageing.

Education and employment prospects in cerebral palsy.

Parents and paediatric neurologists need information on the long-term social prognosis of children with cerebral palsy (CP). No large population-based study has been performed on this topic. On 31 December 1999, to find predictors in childhood of subsequent education and employment, 819 participants with CP born between 1965 and 1978 (471 males; mean age 28y 10 mo, SD 4y, range 21 to 35y) in the Danish Cerebral Palsy Registry were compared with 4406 controls without CP born between 1965 and 1978 (2546 males; mean age 28y 10 mo, SD 4y, range 21 to 35y). Diagnostic subtypes of the 819 participants with CP were: 31% hemiplegia, 43% diplegia, 18% tetraplegia, and 8% other types. Level of motor impairment with respect to walking ability was: 62% able to walk without assistance, 21% with assistance, and 16% not able to walk (for 1% of study children walking ability was not known). Relevant information was obtained from Denmark's unique registries. Of the participants with CP, 33% vs 77% of controls, had education beyond lower secondary school (i.e. after age 15-16y), 29% were competitively employed (vs 82% of controls), 5% were studying, and 5% had specially created jobs. Excluding participants with CP with an estimated developmental quotient (DQ) of less than 50 or inability to walk at age 5 to 6 years, the odds ratios (multivariate analysis) for not being competitively employed were 1.9 for diplegia versus hemiplegia, 22.5 for DQ 50 to 85 versus DQ greater than 85, and 3.7 for those with epilepsy versus those without epilepsy. The severity of motor impairment among participants with CP able to walk had just a minor influence. Only half the participants with CP who had attended mainstream schooling were employed. In conclusion several childhood characteristics seemed to predict long-term social prognosis.