Dental health care for children with Down syndrome:Parents’ description of their children's needs in dental health care settings

A visit to the dental clinic may be challenging for a child with Down syndrome due to medical and oral health problems as well as communication problems. The aim of the present study was to explore how parents of children with Down syndrome describe their child's needs in the dental health care setting. In a survey concerning parental experiences with dental health care in Sweden, free comments were analysed with content analysis and resulted in five categories: “Need for continuity of care in dental health care”; “Need for dental health care professionals to have knowledge and expertise in caring for children with Down syndrome and other disabilities”; “Need for dental health care professionals to use a caring approach with children with Down syndrome”; “Need for the child with Down syndrome to be prepared to participate in their dental health care visit” and “Need for the child with Down syndrome to be given the same rights as typically developing children”. To support children with Down syndrome in an optimal way, dental health care needs to be tailored to meet the child's unique needs. In addition, dental health care professionals need knowledge of and expertise in the care of children with Down syndrome

Molecular pathway-based classification of ectodermal dysplasias: first five-yearly update

To keep pace with the rapid advancements in molecular genetics and rare diseases research, we have updated the list of ectodermal dysplasias based on the latest classification approach that was adopted in 2017 by an international panel of experts. For this purpose, we searched the databases PubMed and OMIM for the term “ectodermal dysplasia”, referring mainly to changes in the last 5 years. We also tried to obtain information about those diseases on which the last scientific report appeared more than 15 years ago by contacting the authors of the most recent publication. A group of experts, composed of researchers who attended the 8th International Conference on Ectodermal Dysplasias and additional members of the previous classification panel, reviewed the proposed amendments and agreed on a final table listing all 49 currently known ectodermal dysplasias for which the molecular genetic basis has been clarified, including 15 new entities. A newly reported ectodermal dysplasia, linked to the gene LRP6, is described here in more detail. These ectodermal dysplasias, in the strict sense, should be distinguished from syndromes with features of ectodermal dysplasia that are related to genes extraneous to the currently known pathways involved in ectodermal development. The latter group consists of 34 syndromes which had been placed on the previous list of ectodermal dysplasias, but most if not all of them could actually be classified elsewhere. This update should streamline the classification of ectodermal dysplasias, provide guidance to the correct diagnosis of rare disease entities, and facilitate the identification of individuals who could benefit from novel treatment options

Behaviour support in dentistry: A Delphi study to agree terminology in behaviour management

Objectives: Dental behaviour support (DBS) describes all specific techniques practiced to support patients in their experience of professional oral healthcare. DBS is roughly synonymous with behaviour management, which is an outdated concept. There is no agreed terminology to specify the techniques used to support patients who receive dental care. This lack of specificity may lead to imprecision in describing, understanding, teaching, evaluating and implementing behaviour support techniques in dentistry. Therefore, this e‐Delphi study aimed to develop a list of agreed labels and descriptions of DBS techniques used in dentistry and sort them according to underlying principles of behaviour. Methods: Following a registered protocol, a modified e‐Delphi study was applied over two rounds with a final consensus meeting. The threshold of consensus was set a priori at 75%. Agreed techniques were then categorized by four coders, according to behavioural learning theory, to sort techniques according to their mechanism of action. Results: The panel (n = 35) agreed on 42 DBS techniques from a total of 63 candidate labels and descriptions. Complete agreement was achieved regarding all labels and descriptions, while agreement was not achieved regarding distinctiveness for 17 techniques. In exploring underlying principles of learning, it became clear that multiple and differing principles may apply depending on the specific context and procedure in which the technique may be applied. Discussion: Experts agreed on what each DBS technique is, what label to use, and their description, but were less likely to agree on what distinguishes one technique from another. All techniques were describable but not comprehensively categorizable according to principles of learning. While objective consistency was not attained, greater clarity and consistency now exists. The resulting list of agreed terminology marks a significant foundation for future efforts towards understanding DBS techniques in research, education and clinical care

Defect root cementum of primary teeth in children with x-linked hypophosphatemia

Defect root cementum of primary teeth in children with x-linked hypophosphatemia Norderyd J. National Oral disability Centre for Rare Disorders, The Institute for Postgraduate Dental Education, Jönköping, Sweden and CHILD research group, Swedish Institute for Disability Research, School of Health and Welfare, Jönköping University, Jönköping, Sweden. Background X-linked hypophosphatemia (XLH) is a rare disorder where low phosphate levels affect the mineralisation of bone and teeth.  The main and well-known dental complications are pulpal infections and abscesses attributed to large pulpal chambers and defective dentine. Increased risk for periodontal disease has also been described and recently, defect root cementum was suggested as a likely aetiology behind periodontal attachment loss in adults with XLH (Biosse Duplan et al 2017). However, no reports describing root cementum defects in primary teeth in children with XLH has to this date been published. The National Oral Disability Centre for Rare Disorders in Jönköping, Sweden, receives many consultations about patients where dental complications are part of a rare syndrome and XLH is one of those.   Aim The aim of this project was to search the National Oral Disability Centre’s consultations about XLH and retrospectively check for root cementum defects described in histological analyses of extracted primary teeth. Results Ten children with confirmed XLH were identified among the consultations to the centre from different parts of Sweden during 2004 to 2018. Five of these children had had a primary tooth sent for biopsy diagnosis. In one analysis, the oldest, the root cementum is not mentioned. The other four biopsy diagnoses describe teeth with globular dentin, typical for XLH, and they also reveal aplastic and/or hypoplastic root cementum. Conclusions - XLH can be added to the list of diagnoses where hypoplastic root cementum in primary teeth may be part of the syndrome.   - In addition to the well-known risk for dental abscesses due to defect dentine, children with XLH may also have an increased risk for early periodontal problems because of dysplastic root cementum.   - Preventive measures should focus both on keeping the enamel intact and on periodontal health. - Even when the XLH diagnosis is already medically and/or genetically verified, there is a value for individuals with XLH to have an extracted or lost primary or permanent tooth sent for biopsy diagnoses of dentin as well as root cementum.

A biopsychosocial approach to functioning, oral health and specialist dental health care in children with disabilities – Swedish and international perspectives

Introduction: Maintaining good oral health may be more important for children with disabilities than others, since problems with oral health may increase the impact of a disability, or the medical condition may increase the risk for poor oral health. In addition, the risk for oral health problems may be influenced by the functioning of the child. Functioning can also affect the child’s ability to cooperate in the dental setting, and how dental treatment is performed. A medical diagnosis alone does not provide enough information about a child’s functioning, nor oral health. Thus, there is a need for a holistic perspective of oral health and dental health care in children with disabilities. The International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY) enables a structured assessment of the biopsychosocial consequences of a health condition. Aim: The overall aim of this thesis was to investigate how biopsychosocial factors relate to oral health and specialist dental health care in children with disabilities in a Swedish, and an international context, with special focus on the experience of dental treatment under general anaesthesia (DGA). Material and methods: The research was conducted using a quantitative, cross-sectional, comparative and descriptive design. An ICF-CY Checklist for Oral Health was completed with data from a structured interview with children 0-16 years old, referred for specialist dental health care, and their parents/carers. Additional information was retrieved from dental and medical records. Three groups were included in data analyses: one large international group of 218 children from Argentina, France, Ireland and Sweden; one large Swedish group with 99 children with complex disabilities; and one international group of children with disabilities and manifest dental caries from Argentina, France and Sweden. Results: The ICF-CY Checklist for Oral Health identified both common and varying functional, social and environmental aspects relevant for oral health and oral health care in children who had been referred to specialist dental clinics in four countries. Swedish children with caries experience had been referred to a paediatric dental specialist clinic at a significantly older age than caries-free children. The medical diagnoses were not significantly related to dental caries or child functioning in the large Swedish group with complex disabilities and low caries prevalence, nor was there a significant relationship between dental caries and child functioning. Collinearity between dental caries and problems in the functioning factor ’Interpersonal interactions andrelationships’ was observed in the international group of children with disabilities and manifest dental caries. DGA sessions with combined medical and dental treatment were common in the large Swedish study group. Children with experience of DGA had more severe problems in intellectual functions than those without experience of DGA. Problems in interpersonal interactions and relationships increased, while problems with mobility decreased, the likelihood for children having had experience of DGA. On international group level, dmft/DMFT was significantly higher in children with the experience of DGA than in those without DGA experience, but looking at Argentina, France and Sweden separately, this was not true for the Swedish children. There were significant, international differences between the prevalence of dmft/DMFT, DGA and environmental barriers. Conclusion: The biopsychosocial perspective, operationalised by the ICF-CY, contributes a holistic view on oral health and specialist dental health care in children with disabilities. In addition to certain differences, children with different health status from different countries share many functional and environmental aspects, important for oral health and dental health care. Early referral to a paediatric specialist dental clinic seemed favourable for oral health. The medical diagnosis was not related to child functioning or dental caries. Child functioning had a significant impact on DGA, and in children with disabilities and manifest dental caries, child functioning also had a correlation with caries. The dental caries burden was a stronger factor than functioning for the experience of DGA, however, dental health organisation and country context seemed to matter the most. Combining dental and medical procedures during the same GA session is good use of resources for both the individual and the society. To ensure children with complex disabilities to have the possibility of achieving equivalent good oral health as other children, DGA is one important factor

Etik i børnetandplejen med særligt fokus på børn med funktionsnedsættelse eller langvarig sygdom

Dental care for children with disabilities – ethical considerations All dental care demands an ethical approach, maybe even more so in child dental care. Today more children with disabilities or longterm illness come to the dentist. How these children should be met and cared for does not differ from other patients, but in dental care for children with disabilities and long-term illness it may be more likely for situations and ethical dilemmas to evolve, where the dentist must stop, reflect, and analyze before continuing with treatment. Autonomy, integrity, and informed consent are important concepts when meeting patients and parents. The dentist also has to be prepared to sometimes step in and substitute autonomy

Specialised dental care for children with complex disabilities focusing on child’s functioning and need for general anaesthesia

International audienc

Specialised dental care for children with complex disabilities focusing on child’s functioning and need for general anaesthesia

International audienc