Dataset Information

Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study.

ABSTRACT: Background: The aim of this study was to collect information on oral health-related quality of life (OHRQoL) in people with rare diseases. Methods: A questionnaire comprising free text questions and the German version of the standardized Oral Health Impact Profile-14 (OHIP-14) questionnaire on OHRQoL was developed. All participants who indicated oral symptoms in the questionnaire were included in a cluster analysis. Different cluster analyses were performed (Ward's, k-Means) to find symptom profile groups in the data. Results: A total of 484 questionnaires with 96 rare diseases were included in the study. The most reported symptoms were anomalies of the tooth formation, dysgnathia, changes in number of the teeth, and malocclusions. The OHIP mean values of the five resulting symptom clusters ranged from 15.1 to 19.9, which is very high compared to the general population in Germany, which has a mean value of 4.09. Discussion: All investigated symptoms show a negative association with OHRQoL, but the strongest were for symptoms of the oral mucosa and periodontal diseases. All the symptoms described in this cluster analysis can lead to considerably higher mean values of the OHIP total score among people with rare disease and thus to worse OHRQoL than reported in the general population.

SUBMITTER: Wiemann S

PROVIDER: S-EPMC6068528 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study.

Wiemann Sabrina S Frenzel Baudisch Nicolas N Jordan Rainer A RA Kleinheinz Johannes J Hanisch Marcel M

International journal of environmental research and public health 20180715 7

<i>Background</i>: The aim of this study was to collect information on oral health-related quality of life (OHRQoL) in people with rare diseases. <i>Methods</i>: A questionnaire comprising free text questions and the German version of the standardized Oral Health Impact Profile-14 (OHIP-14) questionnaire on OHRQoL was developed. All participants who indicated oral symptoms in the questionnaire were included in a cluster analysis. Different cluster analyses were performed (Ward's, k-Means) to fin ...[more]

PMID: 30011949

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Project description:Background and objective: To date, there have only been a few studies on oral health-related quality of life (OHRQoL) of people with Ehlers-Danlos syndromes (EDS) and oral conditions. The aim of this study was, therefore, to analyze the OHRQoL of people with EDS from their own point of view as well as obtain information about their age at the time of the diagnosis, the period of time until diagnosis, and the presence of oral conditions (if any) and their association with oral health quality. Methods: The study was designed as an anonymous questionnaire-based cross-sectional study. We conducted a descriptive analysis of the Oral Health Impact Profile-14 (OHIP-14) scores, age of the participants, age at diagnosis, and the time-period between the first signs of the disease and the diagnosis of EDS. To verify the differences in OHIP-14 scores between patients with and without oral conditions, a Mann-Whitney U test was performed. A multivariate quantile (median) regression analysis was performed to evaluate the effect of different general characteristics (gender, age, and the presence of oral conditions) on the OHIP 14 scores. Furthermore, using a Mann-Whitney U test, the influence of different oral conditions was verified by testing the differences between patients without any oral conditions and patients with a specific diagnosis. Results: A total of 79 evaluable questionnaires from 66 female (83.5%) and 13 male (16.5%) participants were analyzed. On average, after the first condition, it takes 18.36 years before EDS are correctly diagnosed. Oral conditions were described by 69.6% of the participants. The median (interquartile range) OHIP-14 score was eight (ten) points for patients without oral conditions and 19 (15) for patients with oral conditions. The multivariable quantile regression shows a statistical notable association between OHIP-14 score and oral conditions (p < 0.001). OHIP-14 scores for dysgnathia, periodontitis, TMD (Temporomandibular dysfunction), a high-arched palate, malocclusion, and the anomaly of tooth formation were statistical notably different between the participants with and the participants without oral conditions. Conclusions: Long diagnostic pathways seem to be a typical problem in patients with EDS. Oral conditions associated with the underlying disease occurred regularly and showed a negative correlation with OHRQoL.

Project description:OBJECTIVES:To identify sociodemographic and illness-related factors associated with quality of life among people with Schizophrenia. METHODS:A hospital-based cross-sectional study design was employed among 351 people with schizophrenia and attending the followup service at Jimma University Medical Center, psychiatric clinic during the study period. Participants were recruited using a systematic random sampling method and a sample fraction of two was used after the first person was identified by a lottery method. Data entry was done using EpiData version 3.1 and then exported to Statistical Package for Social Sciences version 25 for analysis. Multiple regression analysis was used to determine the statistically significant association between quality of life and independent variables. RESULTS:Among the four domains of quality of life, respondents scored the lowest mean in the social relationships domain (10.14 ± 3.12). Final adjusted multiple regression model revealed, being divorced was negatively associated with the physical domain (β = -0.72, p = 0.02), having no formal education was negatively associated with physical health domain (β = -0.69, p = 0.001) and age was positively associated with the psychological domain (β = 0.371, p = 0.071). Being rural resident was negatively associated with physical domain (β = -0.48, p = 0.01), with environmental domain (β = -0.64, p = 0.03), with social relationships domain (β = -0.45, p = 0.04), and with overall quality of life (β = -1.93, p = 0.006). Positive symptoms (β = -0.22, p = 0.001), negative symptoms (β = -0.36, p = 0.001), and general psychopathology (β = -0.098, p = 0.006) were inversely associated with overall quality of life. CONCLUSION:In this study, the social relationship domain of quality of life among people with schizophrenia has the lowest mean score. Some socio-demographic variables and psychiatric symptoms were found to be key significant associated factors of quality of life. Priority interventions to improve the social deficits and addressing psychiatric symptoms of people with schizophrenia is essential to improve their quality of life.

Project description:Many countries are introducing smaller, more home-like care facilities that represent a radically new approach to nursing home care for people with dementia. The green care farm is a new type of nursing home developed in the Netherlands. The goal of this study was to compare quality of care, quality of life and related outcomes in green care farms, regular small-scale living facilities and traditional nursing homes for people with dementia.A cross-sectional design was used. Three types of nursing homes were included: (1) green care farms; (2) regular small-scale living facilities; (3) traditional nursing homes. All participating nursing homes were non-profit, collectively funded nursing homes in the south of the Netherlands. One hundred and fifteen residents with a formal diagnosis of dementia were included in the study. Data on quality of care was gathered and consisted of outcome indicators (e.g. falling incidents, pressure ulcers), structure indicators (e.g. hours per resident per day), and process indicators (e.g. presence, accessibility and content of protocols on care delivery). Furthermore, questionnaires on cognition, dependence in activities of daily living, quality of life, social engagement, neuropsychiatric symptoms, agitation, and depression were used.Data showed that quality of care was comparable across settings. No large differences were found on clinical outcome measures, hours per resident per day, or process indicators. Higher quality of life scores were reported for residents of green care farms in comparison with residents of traditional nursing homes. They scored significantly higher on the Quality of Life - Alzheimer's disease Scale (p < 0.05, ES = 0.8) indicating a better quality of life. In addition, residents of green care farms scored higher on three quality of life domains of the Qualidem: positive affect, social relations and having something to do (p < 0.05, ES > 0.7). No differences with regular small-scale living facilities were found.Green care farms seem to be a valuable alternative to existing nursing homes. This is important as people with dementia are a heterogeneous group with varying needs. In order to provide tailored care there also is a need for a variety of living environments.

Dataset Information

Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study.

Publications

Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study.

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