The management of ectodermal dysplasia and severe hypodontia. International conference statements.

An international conference on ectodermal dysplasias and hypodontia, held in London in 2004, featured a session devoted to the management of the ectodermal dysplasias and severe hypodontia. This paper presents a set of statements prepared by an international specialist panel, including representatives of patient support groups, who presented and subsequently debated a series of papers on this subject. The following topics were explored: potential roles of patient support groups; core care standards, including the roles and composition of medical and dental multidisciplinary teams for treating these conditions; the format of a baseline data set for patients with an ED; and priorities for research in ectodermal dysplasias, with particular regard to laboratory and clinical studies, and research methodology. The statements are intended to form an international framework for developing patient care pathways, and collaborative research in this field.

[The mentally retarded and the dental health services. Treatment needs and preventive strategies]. / Tannhelsetjenesten og de psykisk utviklingshemmede. Behandlingstilbud og behov.

Mentally retarded individuals are, since 1984 a priority group for the Norwegian public dental health service. This group of patients may have many problems which affect oral health. Difficulties with feeding are common, as are various oral motor problems like rumination, bruxism, mouth breathing and drooling. The impaired oral function may cause retention of food, reduced self-cleaning from lips and tongue and long-term use of puree food. Obstipation is a common problem which is often treated with prunes, raisins or sweetened laxatives. In behaviour modification programs sweets are often used as rewards. Tooth cleaning may cause problems for many parents and caretakers due to lack of cooperation or anatomical malformation of oral structures or teeth. Dental treatment may also be difficult to perform. Recent research in Nordic countries supports earlier reports that mentally retarded individuals have a high incidence of plaque, periodontal disease and malocclusion. Caries does not seem to be a problem. Nevertheless, older individuals with mental retardation have more untreated caries and missing teeth than average. Early intervention with oral motor training and frequent regular preventive treatment (4 x per year) will reduce caries, periodontal disease, early tooth loss and the need for treatment under general anesthesia in the future.

Dental welfare profiles in a group of disabled Norwegian adults.

In a group of 496 non-institutionalized disabled Norwegian adults the possibility of identifying groups with particular dental welfare profiles which could be ascribed to a set of resource profiles was studied. Eight independent resource variables and seven dependent dental welfare variables were included in the model using canonical correlation analysis. Three main dental welfare profiles were identified: The most important profile was dominated by number of own teeth and differences were mainly ascribed to age, income, marital status and education. The second profile comprised a combination of absence of payment arrangement, chewing problems and barriers for dental care and differences were ascribed to sex, hospital experience, and organized assistance. The third profile discriminating between the disabled individuals was problems with performing dental hygiene associated with irregular use of dental services and barriers for dental care and differences were related to sex, marital status, degree of dependency, and organized assistance. For all profiles, individual characteristics were more important than contextual resources.

Determinants of receipt of assistance benefit and welfare services in a group of disabled adults in Norway.

A survey of 472 chronically ill and disabled Norwegian adults with four different main diagnoses (asthma/allergy, hemophilia, osteogenesis imperfecta and rheumatic disease) was carried out during a period of 3 years. The purpose was to analyse the factors influencing their use of available Social Insurance and Welfare services. The participants were interviewed and their medical records studied. Compared to the total population their level of education was lower and fewer were active in the work force. Available social insurance benefits had been obtained by almost half of the patients with hemophilia and osteogenesis imperfecta, but very few with asthma/allergy and rheumatic disease. Patients with high family income and/or high educational level had received relatively more social insurance benefits than others. Men had obtained more benefits than women and young patients more than the older ones. The need for practical welfare services was high, particularly in families where a parent or daughter looked after the patient, where the patient had several additional diagnoses, and among the female patients. There was a higher unmet need for welfare services among patients suffering from asthma/allergy and rheumatic diseases than among those with hemophilia and osteogenesis imperfecta. There were marked regional differences in the granting of both social insurance and welfare services.

Aspects of living conditions among groups of disabled children and their families in Norway: family situation, mothers' health, financial assistance.

A survey of 875 disabled children in Norway aged 0-19, representing ten different disabling conditions, was carried out between January 1976 and December 1978. Parents of the disabled children were interviewed, medical records studied and the children examined. Mother's age, level of education, presence of disabled siblings, spouse's education and profession as well as emergency situations related to the disabled child's condition appeared to be factors influencing the mother's health and therefore inevitably the family's ability to cope with the situation. Social insurance seemed to have been granted in a rather haphazard way; only families of children suffering from hemophilia, mental retardation, spina bifida and cerebral palsy seemed to have received fairly adequate social insurance benefits. Families of children suffering from juvenile rheumatoid arthritis, asthma, congenital heart disease and epilepsy had received less social insurance assistance than those in the other groups. One-parent families had received more social insurance than others. Families with children who were totally dependent on their parents, who had several diagnoses or had spent much time in hospital, had also been granted more social insurance. Welfare benefits distributed by local authorities had mainly been given to families who were also receiving social insurance benefits and to families of children with brain damage. Almost half of all families expressed needs for welfare benefits which had not been met. Thus, there seemed to be an underconsumption of both social insurance and welfare benefits, particularly among some diagnostic groups.