Health status and public health needs in a Togolese child health care centre modelled after the Dutch system.

BACKGROUND: The charity foundation Association Soutien Enfants Togo started a child health care (CHC) centre in Togo that was modelled after the Dutch high-quality CHC system to improve child health. AIM: To describe health care data of children who visited the centre. SUBJECTS AND METHODS: Data were routinely collected between October 2010-July 2017. Outcomes were completed vaccinations, growth, development, lifestyle, physical examination, and laboratory testing results. RESULTS: In total, 8,809 children aged 0-24 years were available. Half (47.5%) of children aged 0-4 years did not receive all eligible free vaccinations from the government. The proportions of stunted children (all) or with a developmental delay (0-4 years) were 10.1% and 9.5%, respectively. In total, 40-50% of all children did not wash their hands with soap after toilet or before eating, or did not use clean drinking water. Furthermore, 5.1-6.6% had insufficient vision, high eye pressure or hearing loss. Sickle cell disease was detected in 5.3%. CONCLUSION: A large group of children in need of prevention and early treatment were detected, informed and treated by the centre. Further research is needed to confirm if this strategy can improve children's health in Sub-Saharan Africa. Our data are available for further research.

Development and evaluation study of FLY-Kids: a new lifestyle screening tool for young children.

Evaluating, discussing, and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. We aimed to develop and evaluate a new lifestyle screening tool for children aged 1-3 years. The lifestyle screening tool "FLY-Kids" was developed using data from lifestyle behaviour patterns of Dutch toddlers, age-specific lifestyle recommendations, target group analyses, and a Delphi process. Through 10 items, FLY-Kids generates a dashboard with an overview of the child's lifestyle that can be used as conversation aid. FLY-Kids was completed by parents of children aged 1-3 years attending a regular youth healthcare appointment. Youth healthcare professionals (YHCP) then used the FLY-Kids dashboard to discuss lifestyle with the parents and provided tailored advice. Parents as well as YHCP evaluated the tool after use. Descriptive and correlation statistics were used to determine the usability, feasibility, and preliminary effect of FLY-Kids. Parents (N = 201) scored an average of 3.2 (out of 9, SD 1.6) unfavourable lifestyle behaviours in their children, while 3.0% complied with all recommendations. Most unfavourable behaviours were reported in unhealthy food intake and electronic screen time behaviour. Parents and YHCP regarded FLY-Kids as usable and feasible. The number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment (r = 0.47, p < 0.001).     Conclusion: FLY-Kids can be used to identify unhealthy lifestyle behaviour in young children and guide the conversation about lifestyle in preventive healthcare settings. End-users rated FLY-Kids as helpful and user-friendly. What is Known: • A healthy lifestyle is important for optimal growth, development and overall health of young children (1-3 years). • Evaluating, discussing and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. What is New: • The new lifestyle screening tool FLY-Kids generates a dashboard with an overview of young children's lifestyle that can be used as conversation aid between parents and youth healthcare professionals. • As parents and youth healthcare professionals rated FLY-Kids as helpful and user-friendly, and the number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment, FLY-Kids can be considered guiding the lifestyle discussion in preventive healthcare settings.

Women-centered care: Implementation of CenteringPregnancy® in The Netherlands.

INTRODUCTION: In response to a relatively high perinatal mortality rate in The Netherlands, the Dutch Health Ministry recommended changes to maternity care, opening a pathway toward more integrated woman-centered services. Because of its potential to positively influence risk factors for adverse pregnancy outcomes, CenteringPregnancy (CP) group prenatal care was implemented. METHODS: We performed a retrospective cohort study (n = 2318) and survey on women's experiences (n = 222) in eight primary care midwifery practices to investigate outcome differences between CP and traditional individual prenatal care. Data from the period 2011-2013 were analyzed. RESULTS: Primiparous and multiparous CP women attended more prenatal care visits compared with women who received individual care (adjusted odds ratio [aOR] 1.23 [95% confidence interval [CI] 1.18-1.29] and 1.29 [1.21-1.36]). Fewer primiparous CP women used pain relief during labor (0.56 [0.43-0.73]), and they initiated breastfeeding more often (1.74 [1.15-2.62]). Women participating in CP were more likely to feel that their wishes with respect to medication use (69.1% vs 54.4%, P = 0.039), physical activities (72.8% vs 52.5%, P = 0.008), and relaxation exercises (67.9% vs 35.6%, P ≤ 0.001) were listened to by care providers. They also felt more supported to actively participate in their care (89.6% vs 68.5%, P = 0.001) and felt more able to voice opinions about care (92.7% vs 73.9%, P = 0.002). CONCLUSIONS: The CP model is a good approach aligning with Dutch policy calling for women-centered care and responding to the needs of pregnant women. This study supports CP scale-up in The Netherlands and adds to the pool of international knowledge about CP implementation.

Problem behavior of individuals with Down syndrome in a nationwide cohort assessed in late adolescence.

OBJECTIVE: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability. STUDY DESIGN: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 years were collected using a written parental questionnaire. Problem behavior was measured using the Child Behavior Checklist and compared with normative data. The degree of intellectual disability was determined using the Dutch Social competence rating scale. RESULTS: The response rate was 62.8% (322/513), and the mean age 18.3 years (SD ± 0.8). The total score for problem behavior was higher in adolescents with Down syndrome than in adolescents without Down syndrome (26.8 vs 16.5; P < .001). Overall, 51% of adolescents with Down syndrome had problem scores in the clinical or borderline range on 1 or more Child Behavior Checklist subscales; this is more than twice as high as adolescents without Down syndrome. Adolescents with Down syndrome had more internalizing problems than their counterparts without Down syndrome (14% and 9%, respectively, in the clinical range); the percentages for externalizing problems were almost equal (7% and 9%, respectively, in the clinical range). The highest problem scores in adolescents with Down syndrome were observed on the social problems and thought problems subscales (large to very large standardized differences). Male sex and/or more severe mental disabilities were associated with more behavioral problems. CONCLUSIONS: Serious problem behavior is more prevalent in adolescents with Down syndrome. This demonstrates the need for a focus on general behavior improvement and on the detection and treatment of specific psychopathology in individuals with Down syndrome.

The creation of the Global Scales for Early Development (GSED) for children aged 0-3 years: combining subject matter expert judgements with big data.

INTRODUCTION: With the ratification of the Sustainable Development Goals, there is an increased emphasis on early childhood development (ECD) and well-being. The WHO led Global Scales for Early Development (GSED) project aims to provide population and programmatic level measures of ECD for 0-3 years that are valid, reliable and have psychometrically stable performance across geographical, cultural and language contexts. This paper reports on the creation of two measures: (1) the GSED Short Form (GSED-SF)-a caregiver reported measure for population-evaluation-self-administered with no training required and (2) the GSED Long Form (GSED-LF)-a directly administered/observed measure for programmatic evaluation-administered by a trained professional. METHODS: We selected 807 psychometrically best-performing items using a Rasch measurement model from an ECD measurement databank which comprised 66 075 children assessed on 2211 items from 18 ECD measures in 32 countries. From 766 of these items, in-depth subject matter expert judgements were gathered to inform final item selection. Specifically collected were data on (1) conceptual matches between pairs of items originating from different measures, (2) developmental domain(s) measured by each item and (3) perceptions of feasibility of administration of each item in diverse contexts. Prototypes were finalised through a combination of psychometric performance evaluation and expert consensus to optimally identify items. RESULTS: We created the GSED-SF (139 items) and GSED-LF (157 items) for tablet-based and paper-based assessments, with an optimal set of items that fit the Rasch model, met subject matter expert criteria, avoided conceptual overlap, covered multiple domains of child development and were feasible to implement across diverse settings. CONCLUSIONS: State-of-the-art quantitative and qualitative procedures were used to select of theoretically relevant and globally feasible items representing child development for children aged 0-3 years. GSED-SF and GSED-LF will be piloted and validated in children across diverse cultural, demographic, social and language contexts for global use.

Protocol for validation of the Global Scales for Early Development (GSED) for children under 3 years of age in seven countries.

INTRODUCTION: Children's early development is affected by caregiving experiences, with lifelong health and well-being implications. Governments and civil societies need population-based measures to monitor children's early development and ensure that children receive the care needed to thrive. To this end, the WHO developed the Global Scales for Early Development (GSED) to measure children's early development up to 3 years of age. The GSED includes three measures for population and programmatic level measurement: (1) short form (SF) (caregiver report), (2) long form (LF) (direct administration) and (3) psychosocial form (PF) (caregiver report). The primary aim of this protocol is to validate the GSED SF and LF. Secondary aims are to create preliminary reference scores for the GSED SF and LF, validate an adaptive testing algorithm and assess the feasibility and preliminary validity of the GSED PF. METHODS AND ANALYSIS: We will conduct the validation in seven countries (Bangladesh, Brazil, Côte d'Ivoire, Pakistan, The Netherlands, People's Republic of China, United Republic of Tanzania), varying in geography, language, culture and income through a 1-year prospective design, combining cross-sectional and longitudinal methods with 1248 children per site, stratified by age and sex. The GSED generates an innovative common metric (Developmental Score: D-score) using the Rasch model and a Development for Age Z-score (DAZ). We will evaluate six psychometric properties of the GSED SF and LF: concurrent validity, predictive validity at 6 months, convergent and discriminant validity, and test-retest and inter-rater reliability. We will evaluate measurement invariance by comparing differential item functioning and differential test functioning across sites. ETHICS AND DISSEMINATION: This study has received ethical approval from the WHO (protocol GSED validation 004583 20.04.2020) and approval in each site. Study results will be disseminated through webinars and publications from WHO, international organisations, academic journals and conference proceedings. REGISTRATION DETAILS: Open Science Framework https://osf.io/ on 19 November 2021 (DOI 10.17605/OSF.IO/KX5T7; identifier: osf-registrations-kx5t7-v1).

Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective?

BACKGROUND: The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. PROCEDURE: Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). RESULTS: The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). CONCLUSIONS: We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer.

BACKGROUND: This study investigates the effect of using patient reported outcomes (PROs) about health-related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation. PROCEDURE: Children (N = 193) with cancer participated in a sequential cohort intervention study, with a control (no PRO was used) and intervention group (a PRO was used). For each child three consecutive consultations with the paediatric oncologist were audio recorded in order to assess the discussed psychosocial topics. One third of the audio recordings were qualitatively analysed. RESULTS: The type of the discussed psychosocial topics in the control and intervention group did not differ from each other. However, the discussion of psychosocial topics increased in the intervention group compared to the control group. In both groups, topics within the social domain occurred most frequently and topics regarding the emotional domain had the lowest incidence. CONCLUSIONS: PROs do not change the psychosocial content of communication. Paediatric oncologists already address psychosocial issues during the consultation, regardless of the use of a PRO. However, with a PRO available they address these issues more systematically and more often.

Ethnic differences and parental beliefs are important for overweight prevention and management in children: a cross-sectional study in the Netherlands.

BACKGROUND: The prevalence of obesity and overweight is highest among ethnic minority groups in Western countries. The objective of this study is to examine the contribution of ethnicity and beliefs of parents about overweight preventive behaviours to their child's outdoor play and snack intake, and to the parents' intention to monitor these behaviours. METHODS: A cross-sectional survey was conducted among parents of native Dutch children and children from a large minority population (Turks) at primary schools, sampled from Youth Health Care registers. RESULTS: Native Dutch parents observed more outdoor play and lower snack intake in their child and had stronger intentions to monitor these behaviours than parents of Turkish descent. In the multivariate analyses, the parents' attitude and social norm were the main contributing factors to the parental intention to monitor the child's outdoor play and snack intake. Parental perceived behavioural control contributed to the child's outdoor play and, in parents who perceived their child to be overweight, to snacking behaviour. The associations between parents' behavioural cognitions and overweight related preventive behaviours were not modified by ethnicity, except for perceived social norm. The relationship between social norm and intention to monitor outdoor play was stronger in Dutch parents than in Turkish parents. CONCLUSIONS: As the overweight related preventive behaviours of both children and parents did differ between the native and ethnic minority populations of this study, it is advised that interventions pay attention to cultural aspects of the targeted population. Further research is recommended into parental behavioural cognitions regarding overweight prevention and management for different ethnicities.

The Preventive Child and Youth Healthcare Service in the Netherlands: The State of the Art and Challenges Ahead.

The Netherlands has a unique system for promoting child and youth health, known as the preventive Child and Youth Healthcare service (CYH). The CYH makes an important contribution to the development and health of children and young people by offering (anticipatory) information, immunisation, and screening, identifying care needs and providing preventive support to children and their families from birth up to the age of 18 years. The CYH is offered free of charge and offers basic preventive care to all children and special preventive care to children who grow up in disadvantaged situations, such as children growing up in poverty or in a family where one of the members has a chronic health condition. Basic care is supported by 35 evidence-based guidelines and validated screening tools. Special care is supported by effective interventions. The impact of the CYH is high. It is estimated that every EUR 1 spent on the CYH provides EUR 11 back. Although the Dutch CYH is a solid public health system with a reach of up to 95% among young children, the access to this service could be further improved by paying more attention to health literacy, making special care available to all children in need and improving transmural and integrated care coordination. In addition, the generation of nationwide data could help to demonstrate the impact of the CYH and will direct and prioritise the necessary care. By continuously developing care on the basis of new (scientific) insights and (societal) issues, the CYH will continue to offer all children in the Netherlands the best preventive healthcare.

Correlates of use of health care services by children and adolescents from 11 European countries.

OBJECTIVE: To examine the association between use of health care services and health status, sociodemographic, and health care system characteristics in children and adolescents from 11 European countries. RESEARCH DESIGN: Cross-sectional surveys in representative samples included using phone or school-based sampling. SUBJECTS: Children and adolescents aged 8-18 years and their parents. Questionnaires were administered in households or at schools in Austria, Czech Republic, France, Germany, Greece, Hungary, Poland, Spain, Switzerland, the Netherlands, and the United Kingdom. MAIN OUTCOME MEASURES: Any visit to ("access") and number of visits ("intensity of use") to health care professionals during the previous 12 months. RESULTS: The study included 16,210 parent-child pairs. In a multivariate analysis, variables statistically associated with access included the following: health status (more disability days, more chronic conditions), sociodemographic characteristics (being younger, being female, having a higher socioeconomic status, or higher parental educational level), and health system variables (higher percentage of public health expenditure, widespread private health care coverage, pediatrician-led system). The strongest association was with disability days [odds ratio (OR) = 6.92; 95% confidence interval (CI) = 5.24-9.14 for 5-15 days]. In the "intensity of use" model, sociodemographic (being younger, strong social support) and health status (chronic conditions, disability days, psychiatric disorders, psychosomatic complaints, poor health-related quality of life) characteristics were associated with greater intensity of use. Health system variables were not significant in this model. CONCLUSIONS: The likelihood of contacting the health services is a function of health status, socioeconomic factors, and health system characteristics. Intensity of use among those having made contact is associated with health status and sociodemographic characteristics but not with health system characteristics.

Putting pharmacogenetics into practice.

Genetics is slowly explaining variations in drug response, but applying this knowledge depends on implementation of a host of policies that provide long-term support to the field, from translational research and regulation to professional education.

Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands.

BACKGROUND: Knowledge about psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands is limited and Dutch reference data are lacking. Aim of the current study is to collect Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity. METHODS: In this study the PedsQL was administered to Dutch children aged 5 to 18 years. A socio-demographic questionnaire was completed as well. The sample consisted of three age groups: 5-7 years (parent proxy report), 8-12 years and 13-18 years (child self report). Analysis was performed with SPSS 16.0.2. A reliability analysis was done using Cronbach's alpha coefficient. Socio-demographic within-group differences were assessed by means of an ANOVA with post hoc Bonferroni correction and t-tests. Subsequently, construct validity was determined by t-tests and effect sizes. RESULTS: For 496 children PedsQL reference data were collected. PedsQL total scores were 84.18 (group 5-7), 82.11 (group 8-12) and 82.24 (group 13-18). Internal consistency coefficients ranged from .53 to .85. Socio-demographic within-group differences demonstrated that, in group 8-12, children of parents born in the Netherlands had significantly lower scores on several PedsQL subscales, compared to children of parents born in another country. With respect to construct validity, healthy children of group 5-7 and 13-18 scored significantly higher than children with a chronic health condition on all subscales, except for emotional functioning. In group 5-7, the PedsQL total score for healthy children was 85.31, whereas the same age group with a chronic health condition scored 78.80. Effect sizes in this group varied from 0.58 to 0.88. With respect to group 13-18, healthy children obtained a PedsQL total score of 83.14 and children suffering from a chronic health condition 77.09. Effect sizes in this group varied from 0.45 to 0.67. No significant differences were found in group 8-12 regarding health. CONCLUSION: The Dutch version of the PedsQL has adequate psychometric properties and can be used as a health related quality of life instrument in paediatric research in the Netherlands.

Family history of diabetes: exploring perceptions of people at risk in the Netherlands.

INTRODUCTION: The aim of this study was to explore the perceptions of causes, risk, and control with regard to diabetes and the role of family history among people at increased risk for type 2 diabetes. METHODS: Semistructured interviews were conducted among people aged 57 to 72 years with (n = 9) and without (n = 12) a family history of diabetes. RESULTS: Participants mentioned different causes for diabetes; these were often a combination of genetic and behavioral factors. Some participants with a family history expressed incoherent causal beliefs; their general ideas about the causes of diabetes did not explain why their relatives were affected. The role of genetics as a cause for diabetes was more pronounced when people perceived diabetes as "running in the family," and this finding did not necessarily relate to a high number of affected relatives. Although people with a family history were aware of the diabetes in their family, they did not always associate their family history with increased risk, nor did they worry about getting diabetes. The absence of diabetes in the family was often used as a reason to perceive a low risk. Participants who primarily perceived genetic predisposition as a cause felt less able to prevent getting diabetes. CONCLUSION: Future diabetes prevention strategies would benefit from giving more attention to individual perceptions, especially in the context of family history, explaining the multifactorial character of diabetes, and highlighting effective ways to reduce the risk.

Parental Opinions about the Expansion of the Neonatal Screening Programme.

BACKGROUND: Advances in genomics will open up opportunities in the fields of genetic testing, early diagnosis and disease treatment. While neonatal screening is the field of application par excellencefor these developments, the debate on its potential benefits and drawbacks is mainly theoretically driven and based on the opinions of professionals. METHODS: We conducted a qualitative study of the perceptions, preferences and needs of parents (and parents to be) with respect to expansion of the neonatal screening programme. Seven focus group discussions were conducted. Using disease scenarios, 4 examples of conditions amenable to neonatal screening were discussed in depth. All focus group discussions were audio taped and content analysed. RESULTS: Participants thought that the medical benefits of screening were very important for the child. Assuming the availability of effective early medical treatment, almost 100% would be willing to participate in a screening programme. If such treatment were absent, their potential willingness would be much lower. CONCLUSIONS: The divergence in attitudes and preferences we found in this study reflected the complexity inherent in any consideration of screening for additional conditions. To implement such options successfully and to direct applied research in genomics, it is important to develop a better understanding of the thinking of target groups, namely parents.

Internet-based self-management offers an opportunity to achieve better asthma control in adolescents.

BACKGROUND: Internet and short message service are emerging tools for chronic disease management in adolescents, but few data exist on the barriers to and benefits of internet-based asthma self-management. Our objective was to reveal the barriers and benefits perceived by adolescents with well-controlled and poorly controlled asthma to current and internet-based asthma management. METHODS: Ninety-seven adolescents with mild-to-moderate persistent asthma monitored their asthma control on a designated Web site. After 4 weeks, 35 adolescents participated in eight focus groups. Participants were stratified in terms of age, gender, and asthma control level. We used qualitative and quantitative methods to analyze the written focus group transcripts. RESULTS: Limited self-efficacy to control asthma was a significant barrier to current asthma management in adolescents with poor asthma control (65%) compared to adolescents with good asthma control (17%; p < 0.01). The former group revealed the following several benefits from internet-based asthma self-management: feasible electronic monitoring; easily accessible information; e-mail communication; and use of an electronic action plan. Personal benefits included the ability to react to change and to optimize asthma control. Patients with poor asthma control were able and ready to incorporate internet-based asthma self-management for a long period of time (65%), whereas patients with good control were not (11%; p < 0.01). CONCLUSIONS: Our findings reveal a need for the support of self-management in adolescents with poorly controlled asthma that can be met by the application of novel information and communication technologies. Internet-based self-management should therefore target adolescents with poor asthma control.

Level of agreement between patient self-report and observer ratings of health-related quality of life communication in oncology.

OBJECTIVE: To determine the level of agreement between patients and observers regarding the frequency with which health-related quality of life topics are discussed during outpatient clinical oncology visits. METHODS: The sample (n=50) consisted of a consecutive series of cancer patients undergoing chemotherapy. Both the patients and observers used a checklist to report which HRQL topics had been discussed during the consultation. Percentage of agreement, kappa and adjust-kappa statistics were calculated. RESULTS: The percentage agreement between patients' and observers' ratings was generally high, ranging from 74% for fatigue to 96% for sleep problems and cognitive functioning. The average percentage of agreement over the 13 HRQL topics rated was 86%. Cohen's kappa varied between 0.41 (for pain) and 0.78 (for sleep problems). Prevalence-adjusted kappa's were generally higher, ranging from 0.48 (for fatigue) to 0.92 (for sleep problems and social functioning). The average Cohen's kappa and prevalence-adjusted kappa over the 13 HRQL topics were 0.56 and 0.71, respectively. Level of agreement was not found to vary significantly as a function of patients' background characteristics. CONCLUSION: Oncology patients' self-reports of the HRQL-related topics discussed during outpatient chemotherapy visits are in reasonably close agreement with those provided by observers. PRACTICE IMPLICATIONS: Our results indicate that the patient is a legitimate source of information about the HRQL-related content of medical encounters, and thus can be used in communication studies where the collection of observational data (e.g., via audio- or videotaping) is either too costly or logistically impractical.

Cost-effectiveness of pharmacogenomics in clinical practice: a case study of thiopurine methyltransferase genotyping in acute lymphoblastic leukemia in Europe.

Only a few studies have addressed the cost-effectiveness of pharmacogenetics interventions in healthcare. Lack of health economics data on aspects of pharmacogenetics is perceived as one of the barriers hindering its implementation for improving drug safety. Thus, a recent Institute for Prospective Technological Studies (IPTS) study, entitled 'Pharmacogenetics and pharmacogenomics: state-of-the-art and potential socio-economic impact in the EU' included an explorative cost-effectiveness review for a pharmacogenetic treatment strategy compared with traditional medical practice. The selected case study examined the cost-effectiveness of thiopurine methyltransferase (TMPT) genotyping prior to thiopurine treatment in children with acute lymphoblastic leukemia (ALL). Information for the cost-effectiveness model parameters was collected from literature surveys and interviews with experts from four European countries (Germany, Ireland, the Netherlands and the UK). The model has established that TPMT testing in ALL patients has a favorable cost-effectiveness ratio. This conclusion was based on parameters collected for TPMT genotyping costs, estimates for frequency of TMPT deficiency, rates of thiopurine-mediated myelosuppression in TPMT-deficient individuals, and myelosuppression-related hospitalization costs in each of the four countries studied. The mean calculated cost per life-year gained by TPMT genotyping in ALL patients in the four study countries was euro 2100 (or euro 4800 after 3% discount) based on genotyping costs of euro 150 per patient. Cost per life-year gained is expected to further improve following the introduction of the wider use of TMPT genotyping and the availability of lower cost genotyping methods. Our analysis indicates that TPMT genotyping should be seriously considered as an integral part of healthcare prior to the initiation of therapy with thiopurine drugs.

Modelling and estimation of valuations for the Dutch London Handicap Scale.

This paper presents a study to estimate a preference-based participation index from the Dutch London Handicap Scale (LHS) classification system that can be applied to past or future Dutch LHS data sets. A subset of 60 states were valued by a representative sample of 285 respondents of the Dutch general adult population. Different models were estimated for predicting health state valuations for all 46,656 states defined by the LHS. Several criteria were used for comparison of the different models and for arguing which one is the most preferred model to use. Our data showed that using the English index would give systematic errors for the Dutch population preferences.

Development and validation of the Dutch version of the London Handicap Scale.

BACKGROUND: The London Handicap Scale (LHS) was found to be a valid and reliable scale for measuring participation restrictions in adults. OBJECTIVE: This paper describes the development and assesses the construct-related validity of a Dutch version of the London Handicap Scale (DLHS). METHODS: The DLHS was tested in 798 adults (mean age: 50.7 years, SD=14.5, range 16 to 85) and validated with the 'Impact on Participation and Autonomy' (IPA) questionnaire, the Dutch version of the EQ-5D and questions concerning comorbidity and use of medical devices. The study population consisted of patients with rheumatoid arthritis, chronic obstructive pulmonary disease (COPD), epilepsy, laryngectomy and multiple sclerosis. RESULTS: Feasibility was satisfactory. Large correlations (ρ > 0.6) for the DLHS sum score were found with the IPA subscales 'autonomy outdoors', 'perceiving problems', 'family role', autonomy indoors', 'work and education' and with the EQ-5D. The DLHS sum score differs significantly between subgroups based on the number of chronic diseases, number of medical devices and self-reported burden of disease or handicap (p< 0.001). CONCLUSIONS: Based on this evaluation the questionnaire seems feasible and valid for assessing differences in level of participation between subgroups of chronically ill or disabled persons in the Netherlands.