Patient engagement as a collaborative process in a large Dutch COVID-19 vaccination study (RECOVAC) - insight into the contribution of patient engagement and learnings for the future.

BACKGROUND: The need for patient engagement in health research has been increasingly acknowledged and accepted in recent years. However, implementation is still limited due to lack of evidence on its value and lack of guidance on how to implement patient engagement. This study aims to provide insight into the contribution of patient engagement in the RECOVAC project, which studied COVID-19 vaccination in kidney patients, and formulate concrete practice-based action perspectives for patient engagement. METHODS: We used a qualitative participatory mixed methods approach, based on the Patient Engagement Monitoring and Evaluation (PEME) framework. Patient engagement and data collection were based on the Reflexive Monitoring in Action (RMA) approach. Data collection included participant observations, open ended questionnaires and interactive reflection sessions. Qualitative analysis was done via a thematic approach. RESULTS: We have described the process of patient engagement systematically, provided insight in its value and found that there is a need for clear aims, expectations and preparations from the start of the engagement process. We have shown that reflection throughout the process is of utmost importance and the same applies to clear communication between researchers and patient representatives. By being part of the consortium patient representatives had direct access to information, straight from the source, on for example the vaccination schedule and medication availability and had indirect influence on decisions made by the National Institute for Public Health and the Environment (RIVM) on preventive measures and treatment against COVID-19. Having experienced patient representatives is important, otherwise training needs to be provided. We also found that patient engagement had impact on conduct and outcomes of research activities itself and may have impact on future research and patient engagement activities in general. CONCLUSION: Patient engagement has changed the course of the project. Concrete practice-based action perspectives have been formulated, which are already being implemented by the Dutch Kidney Patients Association (NVN). Studying patient engagement in a high pace project with high public interest has resulted in lessons learned and will help prepare and implement patient involvement in future research projects. CLINICAL TRIAL REGISTRATION: The RECOVAC studies in which the patient engagement took place are registered at clinicialtrial.gov (NCT04741386 registration date 2021-02-04, NCT04841785 registration date 2021-03-22 and NCT05030974 registration date 2021-08-20).

This article is about the extensive engagement of patients in a scientific research project and what that engagement adds to the project. Although researchers acknowledge the importance of engagement of patients in research projects, it is not happening very often, Because there is not enough scientific evidence on the value of patient engagement and not enough guidance for researcher on how to implement it in their research. We used the Patient Engagement Monitoring and Evaluation (PEME) framework and qualitative participatory mixed methods research to provide insight into patient involvement in the RECOVAC project, which studied COVID-19 vaccination in kidney patients. We also formulated practical guidance for researchers who want to engage patients in their research. We describe the process of patient engagement in the RECOVAC project; what went well and what could be improved. We found that it is important to prepare well, keep reflecting on the engagement process throughout the project with all stakeholders of the project, communicate clearly and have experienced patient representatives involved or have training available for them. Patient engagement had impact on the conduct and outcome of the research activities itself and on activities outside of the project (e.g., doctors changing their conversations with their patients). We can conclude that involving patients changed the project and its outcomes to better fit with the needs of patients. A guideline has been made and is already implemented by the Dutch Kidney Patients Association. The lessons learned from this project will help researchers involve patients in their future projects.

Characterization data of reference materials used for phase II of the priority program DFG SPP 2005 "Opus Fluidum Futurum - Rheology of reactive, multiscale, multiphase construction materials".

A thorough characterization of base materials is the prerequisite for further research. In this paper, the characterization data of the reference materials (CEM I 42.5 R, limestone powder, calcined clay and a mixture of these three components) used in the second funding phase of the priority program 2005 of the German Research Foundation (DFG SPP 2005) are presented under the aspects of chemical and mineralogical composition as well as physical and chemical properties. The data were collected based on tests performed by up to eleven research groups involved in this cooperative program.

Women who smoke during pregnancy are more likely to be referred to an obstetrician during pregnancy and birth: results from a cohort study.

BACKGROUND: Women who smoke during pregnancy make less use of prenatal care; the relation of smoking behavior with the use of other forms of maternal healthcare is unknown. The objective of this study is to investigate the association between women's smoking behavior and their use of healthcare during pregnancy, birth and six weeks postpartum. METHODS: We analyzed data from the Dutch Midwifery Case Registration System (VeCaS), period 2012-2019. We included women with a known smoking status, singleton pregnancies, and who had their first appointment before 24 weeks of gestation with the primary care midwife. We compared three groups: non-smokers, early stoppers (stopped smoking in the first trimester), and late- or non-stoppers (stopped smoking after the first trimester or continued smoking). Descriptive statistics were used to report maternal healthcare utilization (during pregnancy, birth and six weeks postpartum), statistical differences between the groups were calculated with Kruskal-Wallis tests. Multivariable logistic regression was conducted to assess the association between smoking behavior and referrals to primary, secondary or tertiary care. RESULTS: We included 41 088 pregnant women. The groups differed significantly on maternal healthcare utilization. The late- or non-stoppers initiated prenatal care later and had less face-to-face consultations with primary care midwives during pregnancy. Compared to the non-smokers, the early- and late- or non-stoppers were statistically signficiantly more likely to be referred to the obstetrician during pregnancy and birth. Postpartum, the early- and late- or non-stoppers were statistically signficantly less likely to be referred to the obstetrician compared to the non-smokers. CONCLUSIONS: Although the early- and late- or non-stoppers initiated prenatal care later than the non-smokers, they did receive adequate prenatal care (according to the recommendations). The results suggest that not smoking during pregnancy may decrease the likelihood of referral to secondary or tertiary care. The large population of smokers being referred during pregnancy underlines the important role of the collaboration between healthcare professionals in primary and secondary or tertiary care. They need to be more aware of the importance of smoking as a medical and as a non-medical risk factor.

Real-time non-adiabatic dynamics in the one-dimensional Holstein model: Trajectory-based vs exact methods.

We benchmark a set of quantum-chemistry methods, including multitrajectory Ehrenfest, fewest-switches surface-hopping, and multiconfigurational-Ehrenfest dynamics, against exact quantum-many-body techniques by studying real-time dynamics in the Holstein model. This is a paradigmatic model in condensed matter theory incorporating a local coupling of electrons to Einstein phonons. For the two-site and three-site Holstein model, we discuss the exact and quantum-chemistry methods in terms of the Born-Huang formalism, covering different initial states, which either start on a single Born-Oppenheimer surface, or with the electron localized to a single site. For extended systems with up to 51 sites, we address both the physics of single Holstein polarons and the dynamics of charge-density waves at finite electron densities. For these extended systems, we compare the quantum-chemistry methods to exact dynamics obtained from time-dependent density matrix renormalization group calculations with local basis optimization (DMRG-LBO). We observe that the multitrajectory Ehrenfest method, in general, only captures the ultrashort time dynamics accurately. In contrast, the surface-hopping method with suitable corrections provides a much better description of the long-time behavior but struggles with the short-time description of coherences between different Born-Oppenheimer states. We show that the multiconfigurational Ehrenfest method yields a significant improvement over the multitrajectory Ehrenfest method and can be converged to the exact results in small systems with moderate computational efforts. We further observe that for extended systems, this convergence is slower with respect to the number of configurations. Our benchmark study demonstrates that DMRG-LBO is a useful tool for assessing the quality of the quantum-chemistry methods.

Discovery of a functionally selective ghrelin receptor (GHSR1a) ligand for modulating brain dopamine.

SignificanceThe modulation of growth hormone secretagogue receptor-1a (GHSR1a) signaling is a promising strategy for treating brain conditions of metabolism, aging, and addiction. GHSR1a activation results in pleiotropic physiological outcomes through distinct and pharmacologically separable G protein- and ß-arrestin (ßarr)-dependent signaling pathways. Thus, pathway-selective modulation can enable improved pharmacotherapeutics that can promote therapeutic efficacy while mitigating side effects. Here, we describe the discovery of a brain-penetrant small molecule, N8279 (NCATS-SM8864), that biases GHSR1a conformations toward Gαq activation and reduces aberrant dopaminergic behavior in mice. N8279 represents a promising chemical scaffold to advance the development of better treatments for GHSR1a-related brain disorders involving the pathological dysregulation of dopamine.

Assessing Dutch women's experiences of labour and birth: adaptations and psychometric evaluations of the measures Mothers on Autonomy in Decision Making Scale, Mothers on Respect Index, and Childbirth Experience Questionnaire 2.0.

BACKGROUND: The Mothers Autonomy in Decision Making Scale (MADM) assesses women's autonomy and role in decision making. The Mothers on Respect Index (MORi) asseses women's experiences of respect when interacting with their healthcare providers. The Childbirth Experience Questionnaire 2.0 assesses the overall experience of childbirth (CEQ2.0). There are no validated Dutch measures of the quality of women's experiences in the intrapartum period. Therefore, the aim of this study was to evaluate the psychometric properties of these measures in their Dutch translations. METHODS: The available Dutch versions of the MADM and MORi were adapted to assess experiences in the intrapartum period. The CEQ2.0 was translated by using forward-backward procedures. The three measures were included in an online survey including items on individual characteristics (i.e. maternal, birth, birth interventions). Reliability was assessed by calculating Cronbach's alphas. Mann-Whitney, Kruskal Wallis or Student T-tests were applied where appropriate, to assess discrimination between women who differed on individual characteristics (known group validity). We hypothesized that women who experienced pregnancy complications and birth interventions would have statistically lower scores on the MADM, MORi and CEQ2.0, compared with women who had healthy pregnancies and physiological births. Convergent validity was assessed using Spearman Rank correlations between the MADM, MORi and/or CEQ2.0. We hypothesized moderate to strong correlations between these measures. Women's uptake of and feedback on the measures were tracked to assess acceptability and clarity. RESULTS: In total 621 women were included in the cross sectional study. The calculated Cronbach's alphas for the MADM, MORi and CEQ, were ≥ 0.77. Knowngroup validity was confirmed through significant differences on all relevant individual characteristics, except for vaginal laceration repair. Spearman Rank correlations ranged from 0.46-0.80. In total 98% of the included women out of the eligible population completed the MADM and MORi for each healthcare professional they encountered during childbirth. The proportions of MADM and MORi-items which were difficult to complete ranged from 0.0-10.8%, 0.6-2.7%, respectively. CONCLUSIONS: The results of our study showed that the Dutch version of the MADM, MORi and CEQ2.0 in Dutch are valid instruments that can be used to assess women's experiences in the intrapartum period.

The needs of women and their partners regarding professional smoking cessation support during pregnancy: A qualitative study.

BACKGROUND: Despite the health risks of smoking, some women continue during pregnancy. Professional smoking cessation support has shown to be effective in increasing the proportion of pregnant women who quit smoking. However, few women actually make use of professional support. AIM: To investigate the needs of women and their partners for professional smoking cessation support during pregnancy. METHODS: Semi-structured interviews were held with pregnant women and women who recently gave birth who smoked or quit smoking during pregnancy, and their partners, living in the north of the Netherlands. Recruitment was done via Facebook, LinkedIn, food banks, baby stores and healthcare professionals. The interviews were recorded, transcribed and thematically analysed. RESULTS: 28 interviews were conducted, 23 with pregnant women and women who recently gave birth, and five with partners of the women. The following themes were identified: 1) understanding women's needs, 2) responsibility without criticism, and 3) women and their social network. These themes reflect that women need support from an involved and understanding healthcare professional, who holds women responsible for smoking cessation but refrains from criticism. Women also prefer involvement of their social network in the professional support. CONCLUSION: For tailored support, the Dutch guideline for professional smoking cessation support may need some adaptations. The adaptations and recommendations, e.g. to involve women and their partners in the development of guidelines, might also be valuable for other countries. Women prefer healthcare professionals to address smoking cessation in a neutral way and to respect their autonomy in the decision to stop smoking.

The etiology of rhabdomyolysis: an interaction between genetic susceptibility and external triggers.

BACKGROUND AND PURPOSE: Rhabdomyolysis is a medical emergency characterized by acute skeletal muscle breakdown with a sudden rise and subsequent fall of serum creatine kinase (CK) levels. Rhabdomyolysis events are provoked by exposure to external triggers, possibly in combination with an increased genetic susceptibility. We aimed to describe comprehensively the external triggers and potentially pathogenic genetic variants possibly implicated in increased rhabdomyolysis susceptibility. METHODS: We performed a retrospective single-center study, including a total of 1302 patients with an acute CK level exceeding 2000 IU/l. RESULTS: Anoxia was the most frequently reported trigger (40%). A subset of 193 patients were clinically suspected of an underlying genetic disorder (recurrent episodes, a positive family history, very high or persistently increased CK levels). In 72 of these patients, an unequivocal genetic defect was identified. A total of 22 genes with pathogenic variants were identified, including 52 different variants. Of those, 11 genes have been previously associated with rhabdomyolysis (ACADVL, ANO5, CPT2, DMD, DYSF, FKRP, HADHA, PGM1, LPIN1, PYGM, RYR1). Eleven genes are probably implicated in increased susceptibility (including AGL, CAPN3, CNBP, DMPK, MAGT1, ACADM, SCN4A, SGCA, SGCG, SMPD1, TANGO2). CONCLUSION: These findings suggest that the spectrum of genetic susceptibility for rhabdomyolysis has not yet been completely clarified. With the increasing availability of next-generation sequencing in a diagnostic setting, we expect that in more cases a genetic defect will be identified.

Characterization data of reference cement CEM III/A 42.5N used for priority program DFG SPP 2005 "Opus Fluidum Futurum - Rheology of reactive, multiscale, multiphase construction materials".

Two types of cements were selected as the reference cement in the priority program 2005 of the German Research Foundation (DFG SPP 2005). A thorough characterization of CEM I 42.5 R has been made in a recent publication [1]. In this paper, the characterization data of the other reference cement CEM III/A 42.5 N are presented from the aspects of chemical and mineralogical compositions as well as physical and chemical properties. The characterization data of the slag, which is the second main constituent of this specific cement besides the clinker, are presented independently. For all data received, the mean values and the corresponding errors were calculated. The data shall be used for the ongoing research within the priority program. Also, researchers from outside this priority program can benefit from these data if the same materials are used.

Measuring respect and autonomy in Dutch maternity care: Applicability of two measures.

PROBLEM: In the Netherlands there are no valid measurement tools available to measure respectful maternity care and women's autonomy. BACKGROUND: Respectful maternity care including women's autonomy during childbirth are key components of high quality care. AIM: This study aims to evaluate the applicability of the Canadian measures; the Mothers Autonomy in Decision Making (MADM) scale and the Mothers on Respect index (MORi) measures among pregnant women in the Netherlands. METHODS: We translated the measures MORi and MADM according to the WHO guidelines, adapted them to the Dutch health care system, evaluated their psychometric properties, and pilot tested before administration through an online cross-sectional survey. We assessed feasibility by calculating descriptive statistics on scores, and reliability by calculating Cronbach's alpha. The construct validity was measured by hypotheses on differences between subgroups based on maternal characteristics, pregnancy characteristics and healthcare provision. FINDINGS: Of 557 women included in the study, 83% experienced high respect and 62% experienced high autonomy. Both the MORi and MADM showed feasibility, internal consistency, and with respect to construct validity, both measures discriminated between type of care provision. Compared to women with pregnancy complications, those with a healthy pregnancy reported statistically higher MORi-scores. No differences were observed on MADM-scores. DISCUSSION: Both instruments can be used as quality of care measures aiming to improve care and thus experiences of women. CONCLUSION: The results of this study support the feasibility, reliability, and to a certain extent known group validity of the Dutch MORi and MADM measures in pregnant women.

Characterization data of reference cement CEM I 42.5 R used for priority program DFG SPP 2005 "Opus Fluidum Futurum - Rheology of reactive, multiscale, multiphase construction materials".

A thorough characterization of starting materials is the precondition for further research, especially for cement, which contains various phases and presents quite a complex material for fundamental scientific investigation. In the paper at hand, the characterization data of the reference cement CEM I 42.5 R used within the priority program 2005 of the German Research Foundation (DFG SPP 2005) are presented from the aspects of chemical and mineralogical compositions as well as physical and chemical properties. The data were collected based on tests conducted by nine research groups involved in this cooperative program. For all data received, the mean values and the corresponding errors were calculated. The results shall be used for the ongoing research within the priority program.

Laryngeal cancer neck node metastases: Patterns of spread

@#<p style="text-align: justify;"><strong>OBJECTIVE:</strong> To determine the patterns of neck node metastases of patients with laryngeal carcinoma in our institution.<br /><strong>METHODS:</strong><br /><strong>Design:</strong> Chart Review<br /><strong>Setting:</strong> Tertiary Public Hospital<br /><strong>Participants:</strong> Records of thirty-eight (38) laryngeal cancer patients who underwent laryngectomy with neck dissection from January 2010 to January 2017 were considered.<br /><strong>RESULTS:</strong> Records of 34 laryngeal cancer patients with ages ranging from 45-72 years old were included. The most common subsite was the glottis with 19 (55.88%) patients. The distribution of neck node metastases for all subsites were 0/64 (0%) for level I, 22/64 (34.37%) for level II, 12/64 (18.75%) for level III, 7/64 (10.93%) for level IV, 0/64 (0%) for level V, and 1/64 (1.56%) for level VI. Distributions of lymph nodes per subsite for supraglottic SCCA were 0 (0%) for level I, 3/22 (13.63%) for level II, 2/12 (16.66%) for level III, 1/7 (14.28%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI. For glottic SCCA, they were 0 (0%) for level I, 12/22 (54.54%) for level II, 8/12 (66.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 1/1 (100%) for level VI; and for transglottic SCCA, they were 0 (0%) for level I, 7/22 (31.81%) for level II, 5/12 (41.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI.<br /><strong>CONCLUSION:</strong> Our findings show that neck node levels II, III and IV are most frequently affected in laryngeal carcinoma patients in our sample and may guide recommendations for neck dissection in our institution.</p>

Laryngeal cancer neck node metastases: Patterns of spread

OBJECTIVE: To determine the patterns of neck node metastases of patients with laryngeal carcinoma in our institution.METHODS:Design: Chart ReviewSetting: Tertiary Public HospitalParticipants: Records of thirty-eight (38) laryngeal cancer patients who underwent laryngectomy with neck dissection from January 2010 to January 2017 were considered.RESULTS: Records of 34 laryngeal cancer patients with ages ranging from 45-72 years old were included. The most common subsite was the glottis with 19 (55.88%) patients. The distribution of neck node metastases for all subsites were 0/64 (0%) for level I, 22/64 (34.37%) for level II, 12/64 (18.75%) for level III, 7/64 (10.93%) for level IV, 0/64 (0%) for level V, and 1/64 (1.56%) for level VI. Distributions of lymph nodes per subsite for supraglottic SCCA were 0 (0%) for level I, 3/22 (13.63%) for level II, 2/12 (16.66%) for level III, 1/7 (14.28%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI. For glottic SCCA, they were 0 (0%) for level I, 12/22 (54.54%) for level II, 8/12 (66.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 1/1 (100%) for level VI; and for transglottic SCCA, they were 0 (0%) for level I, 7/22 (31.81%) for level II, 5/12 (41.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI.CONCLUSION: Our findings show that neck node levels II, III and IV are most frequently affected in laryngeal carcinoma patients in our sample and may guide recommendations for neck dissection in our institution.

Laryngeal cancer neck node metastasis: Patterns of spread

OBJECTIVE: To determine the patterns of neck node metastases of patients with laryngeal carcinoma in our institution.METHODS:Design:            Chart Review Setting:            Tertiary Public HospitalSubjects:         Records of thirty-eight (38) laryngeal cancer patients who underwent laryngectomy with neck dissection from January 2010 to January 2017 were considered.RESULTS: Records of 34 laryngeal cancer patients with ages ranging from 45-72 years old were included. The most common subsite was the glottis, with 19 (55.88%) patients. The distribution of neck node metastases for all subsites were 0/64 (0%) for level I, 22/64 (34.37%) for level II, 12/64 (18.75%) for level III, 7/64 (10.93%) for level IV, 0/64 (0%) for level V, and 1/64 (1.56%) for level VI. Distributions of lymph nodes per subsite for supraglottic SCCA were 0 (0%) for level I, 3/22 (13.63%) for level II, 2/12 (16.66%) for level III, 1/7 (14.28%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI. For glottic SCCA, they were 0 (0%) for level I, 12/22 (54.54%) for level II, 8/12 (66.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 1/1 (100%) for level VI; and for transglottic SCCA, they were 0 (0%) for level I, 7/22 (31.81%) for level II, 5/12 (41.66%) for level III, 3/7 (42.85%) for level IV, 0 (0%) for level V, and 0/1 (0%) for level VI. CONCLUSION: Our findings show that neck node levels II, III, and IV are most frequently affected in laryngeal carcinoma patients in our sample, and may guide recommendations for neck dissection in our institution.

Sex Differences in Presynaptic Density and Neurogenesis in Middle-Aged ApoE4 and ApoE Knockout Mice.

Atherosclerosis and apolipoprotein E ε4 (APOE4) genotype are risk factors for Alzheimer's disease (AD) and cardiovascular disease (CVD). Sex differences exist in prevalence and manifestation of both diseases. We investigated sex differences respective to aging, focusing on cognitive parameters in apoE4 and apoE knockout (ko) mouse models of AD and CVD. Presynaptic density and neurogenesis were investigated immunohistochemically in male and female apoE4, apoE ko, and wild-type mice. Middle-aged female apoE4 mice showed decreased presynaptic density in the inner molecular layer of the dentate gyrus of the hippocampus. Middle-aged female apoE ko mice showed a trend towards increased neurogenesis in the hippocampus compared with wild-type mice. No differences in these parameters could be observed in middle-aged male mice. Specific harmful interactions between apoE4 and estrogen could be responsible for decreased presynaptic density in female apoE4 mice. The trend of increased neurogenesis found in female apoE ko mice supports previous studies suggesting that temporarily increased amount of synaptic contacts and/or neurogenesis is a compensatory mechanism for synaptic failure. To our knowledge, no other studies investigating presynaptic density in aging female apoE4 or apoE ko mice are available. Sex-specific differences between APOE genotypes could account for some sex differences in AD and CVD.

Production of (117m)Sn with high specific activity by cyclotron.

A method to produce (117m)Sn radionuclide using accelerator production route is described. A new method is proposed to separate the (117m)Sn. Specific activities and thick target yield for (116)Cd(α,3n)(117m)Sn reaction at E(α)=35MeV bombarding energy were determined. The estimated production yield of (117m)Sn was 37.5kBq/µAh for 13.16 mg/cm(2) natural cadmium-oxide target and 410 kBq/µAh for 11.07 mg/cm(2) highly enriched (95%) (116)CdO target. The method developed for separation of (117m)Sn from Cd using anion-exchange resin (Dowex -1×8, fluorine form, 400 mesh) can achieve 98% radiochemical yield of (117m)Sn with more than 99% radionuclidic purity. The estimated specific activity is 2.4 GBq/mg that can be reached with the used irradiation conditions.

Limited concordance between teachers, parents and healthcare professionals on the presence of chronic diseases in ID-adolescents.

Evidence on teachers' knowledge about somatic and mental chronic diseases among ID-adolescent compared to the knowledge parents and healthcare professionals have, is limited. The aim of this study is: (1) to assess the knowledge of teachers on the presence of chronic diseases in ID-adolescents; (2) to compare teachers with parents and healthcare professionals and parents with healthcare professionals regarding the knowledge on the presence of chronic diseases in ID-adolescents. We obtained data on 1044 ID-adolescents attending secondary schools, fully covering one region of the Netherlands. Teachers, parents and general practitioners (GPs) of the adolescents completed a questionnaire about the occurrence of chronic diseases in their child during the previous 12 months. The questionnaire was derived from the Dutch National Permanent Survey on Living Conditions questionnaire periodically administered in a representative population sample (n ≈ 10,000). Concordance between teachers, parents and healthcare professionals on the presence of chronic diseases in ID-adolescents was relatively low. In about half of all 66 dyads the concordance was for the most part fair and just in 10 dyads good to very good; nine of these latter cases concerned somatic chronic diseases. In addition, teachers reported mostly lower prevalence rates of chronic diseases in ID-adolescents compared to the parents, in particular on mental chronic diseases. Although prevalence rates of chronic diseases among ID-adolescents are very high, knowledge on this among teachers is limited. While information on chronic diseases in ID-adolescents is available among different informants, the disagreement between them reflects different points of view between the informants and probably indicates a lack of communication. The communication among teachers, parents and GPs should be improved to combine the knowledge and information on the presence of chronic diseases in ID-adolescents. This may provide opportunities to improve the support of these adolescents in their school career and in their transition from school to work.

Prevalence of chronic diseases in adolescents with intellectual disability.

Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them with the rates among adolescents in the general population. Therefore, we obtained data on 1083 ID-adolescents attending secondary schools, day care centers or living in residential centers fully covering one region of The Netherlands. Parents of the adolescents completed a questionnaire about the occurrence of chronic diseases in their child during the previous 12 months and about background characteristics. The questionnaire was derived from the Dutch National Permanent Survey on Living Conditions questionnaire periodically administered in a representative population sample (n approximately = 10,000). Prevalence rates of chronic diseases in ID-adolescents were compared with those in adolescents in the Dutch general population. Among ID-adolescents, high prevalence rates of a wide range of chronic diseases were found. The five most prevalent were: ADHD (21.1%), PDD-NOS (14.0%), dyslexia (13.9%), migraine or chronic headache (12.7%), and autistic disorder (10.9%). These prevalence rates were all higher (p<0.05) than among adolescents in the general population. Of all ID-adolescents, 62.9% was reported to have at least one chronic disease. The burden of chronic diseases among ID-adolescents is very high, showing a high need for adequate care. These high prevalence rates should alert policymakers and clinicians regarding the widespread of chronic diseases among ID-adolescents.

Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases.

BACKGROUND: Adolescents with intellectual disability (ID) (ID-adolescents) and adolescents with chronic diseases are both more likely to have emotional and behavioural problems. The aim of this study was to assess the association between chronic diseases in ID-adolescents and emotional and behavioural problems in a large school-based sample. METHODS: We obtained data on 1044 ID-adolescents, aged 12-18 years, attending secondary schools in the Netherlands. Parents of the adolescents completed the Dutch version of the Strengths and Difficulties Questionnaire and questions about chronic diseases in their child and about the background of the child. RESULTS: Prevalence rates of emotional and behavioural problems were generally high in ID-adolescents with chronic diseases (45%), compared with ID-adolescents without chronic diseases (17%). The likelihood of emotional and behavioural problems was high in ID-adolescents with two [odds ratios (OR) 4.47; 95% CI: 2.97-6.74] or more than two chronic diseases (OR 8.01; 95% CI: 5.18-12.39) and for ID-adolescents with mental chronic diseases (OR 4.56; 95% CI: 3.21-6.47). Also ID-adolescents with somatic chronic diseases had a high likelihood of emotional and behavioural problems (OR 1.99; 95% CI: 1.33-2.99), in particular in the combination of somatic and mental chronic diseases (OR 5.16; 95% CI: 3.46-7.71). CONCLUSIONS: The current study showed that chronic diseases in ID-adolescents, in particular mental chronic diseases, largely increase the likelihood of emotional and behavioural problems. This should be taken in the provision and planning of care for ID-adolescents.

Pervasive developmental disorder behavior in adolescents with intellectual disability and co-occurring somatic chronic diseases.

Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior. We obtained data on 1044 ID-adolescents, aged 12-18, attending secondary schools in the Netherlands. Parents of the adolescents completed the Dutch version of the Children's Social Behavior Questionnaire (CSBQ) parent version, covering a wide range of PDD behavior, and questions about chronic diseases and background characteristics of their child. ID-adolescents with somatic chronic diseases showed more PDD behavior, in particular milder forms, than their peers without chronic diseases. In addition, ID-adolescents with somatic chronic diseases in combination with pervasive development disorders (PDD) and attention deficit hyperactivity disorder (ADHD) also showed more PDD behavior than their peers with only PDD/ADHD. Clinicians should be extra alert on PDD behavior, in particular the milder forms, in ID-adolescents when somatic chronic diseases are present. However, to strengthen our results about the relationship between somatic chronic diseases in ID-adolescents and PDD behavior studies are needed using both the CSBQ and standardized diagnostic instruments.