Cumulative risk factors for injuries and poisoning requiring hospital care in youth with prenatal substance exposure: A longitudinal controlled cohort study.

Aim: To investigate whether the youth with prenatal substance exposure (PSE) (aged 15-24 years, n = 615) had been in hospital care more often due to injuries and poisoning in comparison with unexposed matched controls (n = 1787). Methods: Data from medical records (exposure) and national health and social welfare registers (outcome and confounders) were combined and youths were monitored from birth until either outpatient or inpatient hospital care for injury or poisoning, death or the end of the study period (December 2016). Cox regression models were used in the analyses accounting for associated child and maternal risk factors. Results: Half (50.4%) of the exposed group and 40.6% of controls had been in hospital care due to injury or poisoning during the follow-up (p < 0.001). The difference between groups was diminished after controlling for postnatal child and maternal risk factors (hazard ratio [HR] = 0.88, 95% confidence interval [CI] 0.72-1.07, p > 0.05). Cumulative adversity, especially out-of-home care in combination with a diagnosed attention or behavioural dysregulation problem, posed the highest risk in both groups (exposed: HR = 1.65, 95% CI 1.24-2.19, p < 0.001; controls: HR = 1.84, 95% CI 1.33-2.56, p < 0.001). Conclusion: Hospital care for injury and poisoning is more common in youth with PSE, but this is largely explained by the related postnatal child and maternal factors. Long-term support to families with maternal substance abuse problems could prevent injury and poisoning among youth with PSE.

Rapid urine screening for ethyl glucuronide from pregnant women as a tool for detecting prenatal alcohol exposure.

BACKGROUND: An increasing prevalence of alcohol consumption is a major public health problem, which has also led to an increasing number of children who have been prenatally exposed to the toxic effects of ethanol. However, obtaining reliable information on prenatal alcohol exposure through maternal self-reports has proved difficult. AIMS: Our aim was to evaluate the potential for rapid screening test for measuring ethyl glucuronide (EtG), a specific alcohol metabolite, from urine samples of pregnant women. METHODS: Five hundred five urine samples of pregnant women were collected anonymously from five prenatal units in two Finnish cities: a tertiary specialist antenatal clinic for pregnant women with problematic substance use (HAL), a regular hospital antenatal clinic (LCH = Lahti Central Hospital), a prenatal screening unit and two community maternity clinics (USR = user self-recruiting units). All samples were screened using rapid EtG test strips, and all positive, uncertain, and randomly selected negative samples were confirmed by quantitative analyses. The samples were also screened for cotinine and use of cannabis. RESULTS: In this material an EtG cut-off of 300 ng/mL suggesting heavy alcohol drinking was exceeded by 7.4% (5/68) of the samples in the HAL clinic, 1.9% (4/202) in LCH, and 0.9% (2/225) in USR. A cut-off of 100 ng/mL was exceeded by 17.6% (12/68) of samples from HAL, 7.5% (16/212) from LCH, and 6.7% (15/225) from USR. Based on confirmatory quantitative analyses, there were no false negatives nor false positives in rapid EtG screening. However, 57 (11.3%) of test results were classified as uncertain. In these cases, confirmation by quantitative analyses resulted in 56.1% rate of positive values. 73% of the samples with EtG > 300 ng/mL showed positive cotinine results suggesting smoking co-occurring with alcohol intake. CONCLUSIONS: Rapid EtG tests may be an easy and inexpensive method, which may improve the possibilities for screening alcohol use among pregnant women during routine prenatal visits. Quantitative EtG analyses are recommended to confirm screening positive and uncertain cases. TRIAL REGISTRATION: NCT04571463 Date of Registration 11/05/2020.

Children with FASD-Evolving Patterns of Developmental Problems and Intervention Costs in Ages 0 through 16 in Finland.

This is a retrospective chart review of 55 persons (mean age 11 years, range 2-28 years) diagnosed with fetal alcohol spectrum disorder (FASD) in one Finnish central hospital. The aim was to determine typical problems and interventions and estimate their costs during different periods of childhood between ages 0 and 16. During the first year, 29/38 (76.3%) were treated in the neonatal intensive care unit, 29/43 (67.4%) received physiotherapy, 15/43 (34.9%) were diagnosed with congenital malformation, 8/43 (18.6%) had heart defects. Between 1 and 6 years, 39/45 (86.7%) received occupational therapy, 25/45 (55.6%) speech therapy, and 12/45 (26.7%) were diagnosed with strabismus. Between 7 and 12 years, 25/37 (67.6%) were diagnosed with ADHD and special education was recommended for 30/37 (81.1%). Learning disorders and the need for psychiatric care increased with age. Between 13 and 16 years, 12/15 (80%) were treated in the psychiatric unit, and by this age, 8/15 (53.3%) were diagnosed with intellectual disability. Before 16 years, 44/55 (80%) were placed out of home, which caused 78.5% of the estimated cumulative mean extra costs of EUR 1,077,000 in 2022 currency. Except for psychiatric costs, health care costs were highest during early years. Charting typical patterns of problems may help in identifying children with FASD and planning follow-ups, content of assessments, and interventions.

Adverse childhood experiences and neurodevelopmental disorders among youth with and without prenatal substance exposure: A longitudinal matched register-based cohort study.

Background: Previous research has shown an association between adverse childhood experiences (ACEs) and secondary mental health problems in youth with prenatal substance exposure (PSE), but the association between ACEs and neurodevelopmental disorders is less clear. Methods: This longitudinal register-based cohort study investigated relationships between health at birth, ACEs (out-of-home care (OHC) and maternal adversities), and neurodevelopmental disorders among youth with PSE (alcohol/drugs, n = 615) and matched unexposed controls (n = 1787). Hospital medical records and register data were merged and analysed using Cox regression models. Results: Conduct and emotional disorders (International Statistical Classification of Diseases and Related Health Problems ICD-10, F90-F94) were more common among the exposed than the controls but only when the exposed and controls with no OHC were compared. The difference appeared in hyperkinetic disorders (ADHD, F90), mixed disorders of conduct and emotions (F92) and emotional disorders with onset specific to childhood (F93). Among the exposed and controls with OHC, over 40% had received an F90-F94 diagnosis. Regarding specific developmental disorders (F80-F83, e.g., impairments in speech and language and scholastic skills) the moderate difference between the exposed and controls attenuated after adjustment for OHC. Again, the rates were highest among the exposed with OHC and the controls with OHC. OHC and maternal risks were interrelated and, together with male sex and low birth weight, were associated with neurodevelopmental disorders both among the exposed and controls and decreased the difference between them. Conclusions: A strong association between ACEs and neurodevelopmental disorders was found. Brain research is needed to examine whether ACEs worsen neurodevelopmental outcomes caused by PSE.

The role of ethical analysis in conducting a health technology assessment of medical treatments for gender dysphoria.

OBJECTIVES: Treatment seeking for gender dysphoria (GD) has increased manifold in western countries. This has led to increased interest on evidence-base of treatments, but also discussions related to human rights, identity politics, gender-related structures, and medicalization. Combining these discourses into coherent health policy is difficult. Health technology assessment (HTA) is the golden standard for assessing whether a medical intervention should be included in a health system. A comprehensive HTA should include medical, safety, and cost-utility perspectives, but often also ethical, societal, organizational, and legal concerns. Still, ethics is often omitted in practice. This paper aims to demonstrate how integrated ethical analysis influenced a HTA of complex and controversial topics like GD. METHODS: A HTA of medical treatments of GD was conducted using integrated ethical analysis based on the EUnetHTA-model. This integrates ethical thinking into the whole HTA, explicitly analyses ethical topics, and balances arguments using several ethical theories. RESULTS: Integrating ethics had a significant impact on the HTA process and recommendations. It influenced how the HTA was planned and executed, emphasized autonomy and justice when creating the recommendations, and helped the workgroup to understand the complexity of combining different stakeholders' discourses. Tensions between scientific evidence, expectations, and values became explicit. CONCLUSIONS: Comprehensive HTA provides an important, integrative approach to considering complex and controversial topics in health systems. HTA emphasizes multidisciplinary and multi-stakeholder approach but simultaneously forces a pragmatic, results-oriented, and evidence-based approach on all argumentation. Ethical analysis can facilitate interactions between stakeholders, bridge different discourses, and help formulate widely acceptable guidelines and policy decisions.

Mood and neurotic disorders among youth with prenatal substance exposure: A longitudinal register-based cohort study.

BACKGROUND: Prenatal substance exposure is associated with mood and neurotic disorders but this association is complex and understudied. This study investigated the recorded use of specialised healthcare services for mood and neurotic disorders among youth with prenatal substance exposure in comparison with an unexposed matched cohort. Furthermore, the influence of adverse maternal characteristics and out-of-home care (OHC) is investigated. METHODS: This longitudinal register-based matched cohort study included 594 exposed and 1735 unexposed youth. Cox proportional hazard regression models were applied to study the first episode of mood and neurotic disorders in specialised healthcare from 13 years of age, and the influence of adverse maternal characteristics and OHC. Mediation analysis was applied to study the mediating effect of OHC on the association between prenatal substance exposure and the disorders. RESULTS: The exposed cohort had a two-fold higher likelihood of being treated at specialised healthcare for mood and neurotic disorders compared with the unexposed cohort (HR 2.34, 95% CI 1.86-2.95), but this difference was attenuated to non-significant levels (AHR 1.29, 95% CI 0.92-1.81) following adjustments with adverse maternal characteristics and OHC. OHC mediated 61% (95% CI 0.41-0.94) of the association between prenatal substance exposure and youth's mood and neurotic disorders. LIMITATIONS: Register data likely include more severe cases of disorders, and as an observational study, causality cannot be assessed. CONCLUSION: Mood and neurotic disorders are more common following prenatal exposure to substances and interlinked with significant adversities in the postnatal caregiving environment and OHC.

Evidence needs, training demands, and opportunities for knowledge translation in social security and insurance medicine: A European survey.

OBJECTIVE: To perform a European survey of the evidence needs and training demands of insurance medicine professionals related to professional tasks and evidence-based practice. DESIGN: International survey. SUBJECTS: Professionals working in insurance medicine. METHODS: Experts designed an online questionnaire including 26 questions related to 4 themes: evidence needs; training demands; evidence-seeking behaviour; and attitudes towards evidence-based medicine. Descriptive statistics were presented by country/conference and the total sample. RESULTS: A total of 782 participants responded. Three-quarter of participants experienced evidence needs at least once a week, related to mental disorders (79%), musculoskeletal disorders (67%) and occupational health (65%). Guidelines (76%) and systematic reviews (60%) were the preferred types of evidence and were requested for assessment of work capacity (64%) and prognosis of return-to-work (51%). Evidence-based medicine was thought to facilitate decision-making in insurance medicine (95%). Fifty-two percent of participants felt comfortable finding, reading, interpreting, and applying evidence. Countries expressed similar needs for reviews on typical topics. CONCLUSION: This study reveals evidence gaps in key areas of insurance medicine, supporting the need for further research, guidelines and training in evidence-based insurance medicine. Importantly, insurance medicine professionals should recognize that evidence-based practice is crucial in producing high-quality assessments.

Completed secondary education among youth with prenatal substance exposure: A longitudinal register-based matched cohort study.

INTRODUCTION: The dual impact of prenatal substance exposure (i.e. alcohol/drugs) and adverse postnatal caregiving environment on offspring secondary education completion is an understudied research area. The aim was to investigate the influence of childhood adversities, out-of-home care, and offspring's mental and/or behavioural disorders on secondary education completion among prenatally exposed offspring in comparison to matched unexposed offspring. METHODS: This is a longitudinal register-based matched cohort study in Finland including offspring with a history of prenatal substance exposure and a matched unexposed cohort. The study sample included 283 exposed and 820 unexposed offspring aged 18-23 years. RESULTS: The results showed a time lag in secondary education completion and lower educational attainment overall among exposed compared with unexposed (37.8% vs. 51.0%, respectively). The results from the multivariate logistic regression models showed that the differences in the secondary education completion between exposed and unexposed were diminished in the presence of covariates. A cumulative childhood adversity score and out-of-home care were not associated with secondary education completion in the multivariate models, whereas the different domains of offspring's mental and/or behavioural disorders including psychiatric disorders (AOR 0.65, 95% CI 0.45-0.96), neuropsychological disorders (AOR 0.35, 95% CI 0.23-0.54) and dual psychiatric and neuropsychological disorder (AOR 0.29, 95% CI 0.18-0.48) showed an independent negative effect on secondary education completion. CONCLUSIONS: Inferior educational outcomes may not be directly linked with prenatal substance exposure but may rather reflect the extent of evolving offspring's mental and/or behavioural disorders over time influenced by childhood adversities.

Core competencies for ethics experts in health technology assessment.

OBJECTIVES: There is no consensus on who might be qualified to conduct ethical analysis in the field of health technology assessment (HTA). Is there a specific expertise or skill set for doing this work? The aim of this article is to (i) clarify the concept of ethics expertise and, based on this, (ii) describe and specify the characteristics of ethics expertise in HTA. METHODS: Based on the current literature and experiences in conducting ethical analysis in HTA, a group of members of the Health Technology Assessment International (HTAi) Interest Group on Ethical Issues in HTA critically analyzed the collected information during two face-to-face workshops. On the basis of the analysis, working definitions of "ethics expertise" and "core competencies" of ethics experts in HTA were developed. This paper reports the output of the workshop and subsequent revisions and discussions online among the authors. RESULTS: Expertise in a domain consists of both explicit and tacit knowledge and is acquired by formal training and social learning. There is a ubiquitous ethical expertise shared by most people in society; nevertheless, some people acquire specialist ethical expertise. To become an ethics expert in the field of HTA, one needs to acquire general knowledge about ethical issues as well as specific knowledge of the ethical domain in HTA. The core competencies of ethics experts in HTA consist of three fundamental elements: knowledge, skills, and attitudes. CONCLUSIONS: The competencies described here can be used by HTA agencies and others involved in HTA to call attention to and strengthen ethical analysis in HTA.

Cohort profile: ADEF Helsinki - a longitudinal register-based study on exposure to alcohol and drugs during foetal life.

PURPOSE: The need for longitudinal studies on prenatal substance exposure (PSE) extending into adulthood is widely recognised. In particular, studies on the dual effect of exposure to substances and adverse childhood experiences are needed. This register-based matched cohort study investigates the effect of this dual exposure on the health and development of youth with PSE. The follow-up is from birth to young adulthood. PARTICIPANTS: The exposed youth were born in 1992-2001 to mothers with a significant substance misuse problem during pregnancy. The mothers were identified in primary care maternity clinics in the Helsinki metropolitan area and referred for intensified pregnancy follow-up in a tertiary care setting (HAL-clinics). Data from hospital medical records were collected for the mothers during the pregnancy follow-up and linked with register data from multiple national health and social welfare registers obtained for each mother-child dyad from birth until the end of 2015-2018. Similar register data were gathered for three matched mother-child dyads without any evidence of the mother's substance misuse in national health and social welfare registers. The study consists of 615 exposed and 1787 unexposed youth aged 15-24 years. FINDINGS TO DATE: A majority of the exposed youth (64%) had been in out-of-home care at least once compared with 8% among the unexposed. Outpatient and inpatient hospital care due to mental or behavioural disorders were two to three times more common among the exposed than among the unexposed. The exposed had less often completed secondary school education and had more often needed social assistance. FUTURE PLANS: The data comprise a wide range of information on infant health, youth's mental and somatic health and development, out-of-home care history, and mother's life situation at the delivery and later health. Risk and protective factors for different long-term developmental outcomes in adolescence or in young adulthood will be studied.

Prenatal substance exposure, adverse childhood experiences and diagnosed mental and behavioral disorders - A longitudinal register-based matched cohort study in Finland.

Both prenatal substance exposure (PSE, alcohol/drugs) and experiences during the first years of life have powerful effects on brain development. However, only a few studies have investigated the combined effect of PSE and adverse childhood experiences (ACEs) on mental and behavioral disorders among exposed adolescents and adults. This longitudinal register-based cohort study 1) compared the nature and extent of diagnosed mental and behavioral disorders among youth with PSE and matched unexposed controls, and 2) investigated the influence of PSE, health in infancy and ACEs (maternal risk factors and out-of-home care, OHC) on diagnoses of mental and behavioral disorders. The data consisted of 615 exposed youth aged 15-24 years and 1787 matched unexposed controls. Data from hospital medical records and nine registers were merged for the analysis. Descriptive analysis methods and Cox regression were used. The results showed that the prevalence of mental and behavioral disorders was twice as high among exposed compared with controls. The highest levels of mental and behavioral disorders and ACEs were found among exposed with at least one OHC episode. The difference in the risk of mental and behavioral disorders between exposed and controls diminished after controlling for the effect of ACEs. Low birth weight, maternal risk factors, and OHC were the strongest predictors of mental and behavioral disorders. The results suggest that PSE alone does not explain poorer mental health among exposed youth. Risk factors accumulate, and low birth weight and ACEs are strongly associated with increased risk of mental and behavioral disorders.

Physicians' experiences with sickness absence certification in Finland.

Aims: The aim of this study was to explore Finnish physicians' perceptions of sickness absence (SA) certification. Methods: A questionnaire was sent to 50% of the physicians in Finland who provide care to working-age patients in a clinical practice setting. Of the 8867 physicians, 3089 responded. Physicians handling SA certification patients at least a few times per month were included (n = 2472). Results: At least a few times per month, 61% of all physicians perceived SA issues as problematic, 60% had experienced a lack of time in dealing with SA matters, 36% had disagreed with a patient on SA certification, and 36% had met a patient who wanted a SA certificate for reasons other than a disease or injury. Physicians were least worried about patients filing complaints (4%), exhibiting threatening behaviour (2%), or switching physicians for SA certification reasons (1%). A total of 60% of physicians had prescribed SA for a longer period than necessary because of long waiting times for further care/measures. Non-specialized physicians, general practitioners, and psychiatrists experienced problems more frequently than surgeons and occupational health physicians. Over 50% of the respondents had a fairly large or very large need to deepen their knowledge of social insurance matters. The need for national guidelines for all or some diseases was reported by 80% of the respondents. Conclusions: Many physicians perceive SA tasks as problematic and are unable to dedicate enough time to them. Shortcomings in physicians' sickness certification know-how, as well as obstacles in the healthcare and rehabilitation system, prolong the SA process. Attitudes towards the adoption of national guidelines on the duration of SA were positive.

Early part-time sick leave results in considerable savings in social security costs at national level: an analysis based on a quasi-experiment in Finland.

Objectives We analyzed social security costs based on an earlier quasi-experiment that compared work participation between partial sickness beneficiaries and a matched group of full sickness beneficiaries. Methods Utilizing a population-based 70% representative sample, 1878 persons with part-time sick leave (intervention group) due to musculoskeletal diseases or mental disorders at an early stage of work disability and their propensity-score-matched controls with full-time sick leave were followed for two years. The outcome was the difference (absolute and relative) in social security costs between the intervention and control groups during follow-up. Costs of sickness absence, vocational rehabilitation, unemployment, and retirement days were calculated from national administrative registers. Results A cost reduction of €2395 per person per year [95% confidence interval (CI) -2890- -1899) was observed in the intervention compared with the control group. The cost ratio was 0.512 (95% CI 0.511-0.513). The largest savings were attributable to differences in the costs of retirement and vocational rehabilitation. The savings were higher for the second compared with the first follow-up year. Costs were saved across both genders and diagnostic groups, however, savings for women with musculoskeletal diseases were lowest. Conclusions Part-time instead of full-time sick leave, at the early stage of work disability due to musculoskeletal diseases or mental disorders, leads to considerable social security cost savings during two years, in correspondence with increased work participation and in addition to earlier reported health benefits. Part-time sick leave can be recommended from an economic perspective; however more consideration should be given to women with musculoskeletal diseases.

Sustained return to work and work participation after a new legislation obligating employers to notify prolonged sickness absence.

AIMS: Return to work (RTW) after prolonged sickness absence benefits both the individual and society. However, the effectiveness of legislation aiming to improve RTW remains uncertain. We examined whether sustained RTW and work participation were different before and after a legislative change enacted in 2012 (i.e. an intervention) that obligated employers to give notice of prolonged sickness absence to occupational health services. METHODS: Two random samples (2010 and 2013) of the Finnish working aged population (70%, ~2.6 million each) were drawn. Using survival analysis, we assessed sustained RTW (≥28 consecutive working days) during a two-month follow-up after a sickness absence minimum of 30 calendar days in the pre- and post-intervention period. We also identified pathways for RTW with cluster analysis and calculated relative gain in work participation in the total sample and by several population subgroups. RESULTS: In the total sample, sustained RTW was 4% higher and the mean time to sustained RTW was 0.42 days shorter in the post- than in the pre-intervention period. The estimates were larger among women than men and among those with mental disorders compared with other diagnoses. Changes in the pathways for sustained RTW indicated a 4.9% relative gain in work participation in the total sample. The gain was larger among those who lived in areas of low unemployment rate (20.6%) or worked in the public sector (11.9%). CONCLUSIONS: From 2010 to 2013, RTW and work participation increased among the employees with prolonged sickness absence, suggesting that the legislative change enhanced RTW. The change in work participation varied by population subgroup.

Labour Market Segregation and Gender Differences in Sickness Absence: Trends in 2005-2013 in Finland.

Objectives: Women have higher sickness absence rate than men, but less is known of changes in this difference over time. We examined gender differences in sickness absence trends focusing on gender segregation in the labour market. Methods: We used large nationwide register data on Finnish wage earners aged 25-59 and generalized estimation equations based on repeated logistic regression to estimate the annual risk of sickness absence lasting at least 2 weeks. Results: Between 2005 and 2013, the age-adjusted proportion (%) of employees with all-cause sickness absence decreased from the initial levels of 10.6 among men and 15.1 among women by 16.7 and 13.6%, respectively. Among both genders, the largest decrease in sickness absence coincided with the peak of the economic recession in 2009. In sickness absence due to all causes and musculoskeletal diseases, also the excess decrease among men mainly occurred in 2009, and in sickness absence due to mental disorders 2 years later. In sickness absence due to all causes and musculoskeletal diseases, the increasing gender difference was mainly attributable to a larger decrease in sickness absence at the time of the recession in male-dominated groups, such as in manual and manufacturing work, than in other sectors and occupational classes. In mental disorders, the increasing gender difference was partly attributable to a later smaller decrease in sickness absence among female-dominated lower non-manual and lower income employment groups. The increasing gender differences did not result from differential distributional changes in employment or sociodemographic factors among the employed male and female populations. In fact, widening of the gender gap in sickness absence due to all causes and musculoskeletal diseases would have been even larger without faster increase among women in the educational level and in non-manual employment. Conclusions: Sickness absence decreased especially in male-dominated employment groups, resulting in a larger decrease in absences among men compared with women. More research is needed to ascertain whether these differential changes are attributable, for example, to reduced willingness to seek medical advice or increased presenteeism in male-dominated groups, or to increased work pressures in female-dominated groups. Selection mechanisms, i.e. men's increased ill-health-related exit from work through other routes than sickness absence, also cannot be ruled out.

Legislative change enabling use of early part-time sick leave enhanced return to work and work participation in Finland.

Objectives The aim of the study was to assess the effectiveness of the use of part-time sick leave at the early (first 12 weeks) stage of work disability due to mental disorder or musculoskeletal disease on sustained return to work (RTW) and overall work participation. Methods In a nation-wide register-based quasi-experimental study, we compared sustained RTW (ie, ≥28 consecutive days at work) and 2-year work participation between the part- and full-time sickness absence (SA) benefit groups (N=1878 in each group) using propensity-score matching. Persons who received partial or full SA benefit due to musculoskeletal diseases or mental disorders between January 1, 2010 and December 31, 2011 were eligible as cases or controls, respectively. Results A higher proportion showed sustained RTW after part- compared to full-time sick leave [absolute risk difference 8.0%, 95% confidence interval (95% CI) 5.3-10.9]. Moreover, the proportion of time at work was at a 10.5% higher level in the part- compared to full-time sick leave group. The prevalence of full disability retirement was almost three-fold among the full- compared to part-time sick leave group, whereas partial disability retirement was 4.5-fold more prevalent in the part- compared to full-time sick leave group. Conclusions The use of part-time sick leave during the first three months of SA enhances RTW and overall work participation during two years among persons with mental disorders and musculoskeletal diseases. The prescription of part-time sick leave can be recommended at an early stage of work disability.

Multiprofessional evaluation in clinical practice: establishing a core set of outcome measures for children with cerebral palsy.

AIM: To develop a national consensus on outcome measures that define functional ability in children with cerebral palsy (CP) according to the International Classification of Functioning, Disability and Health (ICF) framework. METHOD: The project started in 2008 in neuropaediatric units of two university hospitals and one outpatient clinic. Each professional group selected representatives to be knowledge brokers for their own specialty. Based on the evidence, expert opinion, and the ICF framework, multiprofessional teams selected the most valid measures used in clinical practice (2009-2010). Data from 269 children with CP were analysed, classified by the Gross Motor Function Classification System, Manual Ability Classification System, and Communication Function Classification System, and evaluated. RESULTS: The process aimed at improving and unifying clinical practice in Finland through a national consensus on the core set of measures. The selected measures were presented by professional groups, and consensus was reached on the recommended core set of measures to be used in all hospitals treating children with CP in Finland. INTERPRETATION: A national consensus on relevant and feasible measures is essential for identifying differences in the effectiveness of local practices, and for conducting multisite intervention studies. This project showed that multiprofessional rehabilitation practices can be improved through respect for and inclusion of everyone involved.

Psychosocial intervention for children with narcolepsy:: Parents' expectations and perceived support.

The study focuses on the parents of children who were affected by narcolepsy after a pandemic influenza and vaccination campaign in Finland. The main aim of the study was to clarify parents' expectations and perceived support from the intervention and to assess their need for additional support. The data were gathered using questionnaires. Fifty-eight parents answered the baseline questionnaire and 40 parents the final questionnaire. Parents' expectations of and perceived support from the intervention mainly related to peer support. The intervention offered an arena for sharing information and experiences and provided encouragement for coping in everyday life. Many expectations were not met, especially those concerning information about needed services, financial benefits and availability of local support. The results highlight that for persons with rare disorders and their families, an inpatient psychosocial intervention can offer an important arena to receive both informal and professionally led peer support. Comprehensive psychosocial and other support services are also needed in the community. Listening to parents' perspectives on the intervention and perceived support can help to establish multiform family-centred support for families with children affected by a rare chronic disabling condition.