Rare disease patients and carers report significant impacts on mental health but studies on UK populations have focussed on relatively few, specific conditions. Collectively rare conditions represent ...a substantial health burden, with an estimated 3.5 million affected individuals in the UK.
We explored the impact on mental health of living with a rare condition, and experiences of health service support, through an online survey. The survey assessed the impact of specific experiences commonly reported by those affected by a rare condition through multiple choice questions and Likert scale items, and open text question boxes. Through a multi-stakeholder workshop that involved facilitated discussion of our findings with patients/carers, clinicians and a government advisor, we developed recommendations for policy and practice toward a more person-centred and integrated approach.
Eligible responses came from 1231 patients and 564 carers. Due to their rare condition, the majority of respondents (> 90%) had felt worried/anxious; stressed; and /or low/depressed. Thirty-six percent of patients and 19% of carers had had suicidal thoughts. Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), and not being believed or taken seriously by them. Only 23% of respondents felt healthcare professionals considered mental and physical health as equally important. Almost half reported never having been asked about mental health by healthcare professionals. Our findings indicate that access to, and appropriateness of, professional psychological support needs to be improved. Peer group support is important but signposting is inadequate. Our recommendations are for healthcare professionals to be supported to effectively and sensitively recognise and address patients' and carers' mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services.
Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services.
This paper describes the cross-cultural adaptation of the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ) into Malay version (Malay PIDAQ), an oral health-related quality of life ...(OHRQoL) instrument specific for orthodontics for Malaysian adolescents between 12 and 17 years old.
The PIDAQ was cross-culturally adapted into Malay version by forward- and backward-translation processes, followed by psychometric validations. After initial investigation of the conceptual suitability of the measure for the Malaysian population, the PIDAQ was translated into Malay, pilot tested and back translated into English. Psychometric properties were examined across two age groups (319 subjects aged 12-14 and 217 subjects aged 15-17 years old) for factor structure, internal consistency, reproducibility, discriminant and construct validity, criterion validity, and assessment of floor and ceiling effects.
Fit indices by confirmatory factor analysis showed good fit statistics (comparative fit index = 0.936, root-mean-square error of approximation = 0.064) and invariance across age groups. Internal consistency and reproducibility tests were satisfactory (Cronbach's α = 0.71-0.91; intra-class correlations = 0.72-0.89). Significant differences in Malay PIDAQ mean scores were observed between subjects with severe malocclusion and those with slight malocclusion based on a self-rated and an investigator-rated malocclusion index, for all subscales and all age groups (p < 0.05). Construct validity of the Malay PIDAQ subscales with those who rated themselves with excellent to poor dental appearance and those who felt they needed or did not need braces, showed significant associations for all age groups (p < 0.05). Criterion validity also showed significant association between the Malay PIDAQ scores with those with and without impact on daily activities attributed to malocclusion. There were no ceiling effects detected but floor effects were detected for the Aesthetic Concern subscale.
The study has provided initial evidence for the validity and reliability of the Malay PIDAQ to assess the impact of malocclusion on the OHRQoL of 12-17 year old Malaysian adolescents.
Abstract
Background
SARS-CoV-2 is an RNA virus responsible for the coronavirus disease 2019 (COVID-19) pandemic. Viruses exist in complex microbial environments, and recent studies have revealed both ...synergistic and antagonistic effects of specific bacterial taxa on viral prevalence and infectivity. We set out to test whether specific bacterial communities predict SARS-CoV-2 occurrence in a hospital setting.
Methods
We collected 972 samples from hospitalized patients with COVID-19, their health care providers, and hospital surfaces before, during, and after admission. We screened for SARS-CoV-2 using RT-qPCR, characterized microbial communities using 16S rRNA gene amplicon sequencing, and used these bacterial profiles to classify SARS-CoV-2 RNA detection with a random forest model.
Results
Sixteen percent of surfaces from COVID-19 patient rooms had detectable SARS-CoV-2 RNA, although infectivity was not assessed. The highest prevalence was in floor samples next to patient beds (39%) and directly outside their rooms (29%). Although bed rail samples more closely resembled the patient microbiome compared to floor samples, SARS-CoV-2 RNA was detected less often in bed rail samples (11%). SARS-CoV-2 positive samples had higher bacterial phylogenetic diversity in both human and surface samples and higher biomass in floor samples. 16S microbial community profiles enabled high classifier accuracy for SARS-CoV-2 status in not only nares, but also forehead, stool, and floor samples. Across these distinct microbial profiles, a single amplicon sequence variant from the genus
Rothia
strongly predicted SARS-CoV-2 presence across sample types, with greater prevalence in positive surface and human samples, even when compared to samples from patients in other intensive care units prior to the COVID-19 pandemic.
Conclusions
These results contextualize the vast diversity of microbial niches where SARS-CoV-2 RNA is detected and identify specific bacterial taxa that associate with the viral RNA prevalence both in the host and hospital environment.
Nutritional deficiencies in children Ali, Farhana; Mouzaki, Marialena
Current opinion in gastroenterology,
03/2024, Letnik:
40, Številka:
2
Journal Article
Recenzirano
The purpose of this review is to summarize commonly encountered nutritional deficiencies in children and their implications. Considering data suggesting that the majority of children with the United ...States consume unhealthy diets, the growing interest in the consumption of limiting diets, as well as the insidious clinical presentation of nutritional deficiencies, this is a timely and highly relevant review.
The underlying socioeconomic and medical circumstances that predispose to nutritional deficiencies in the Western world are covered. The high index of suspicion required to recognize nutritional deficiencies and the limitations of available testing are also discussed. Finally, the need for the development of accurate nutritional biomarkers is presented as a future research priority.
Nutritional deficiencies are not uncommon, even in high resource countries. Clinicians should remain vigilant and include nutritional deficiencies in the differential diagnoses of patients presenting with nonspecific symptoms.
The Malay version of the Psychosocial Impact of Dental Aesthetics Questionnaire has been validated for use by Malaysian adolescents. Although Malay is their national language, English is widely used ...as the lingua franca among Malaysians of different ethnicities. This study aimed to validate an English version of the PIDAQ adapted for use by Malaysian adolescents to optimize data capture from adolescents who prefer English as the medium for communication.
The published English version of PIDAQ was pilot tested on 12- to 17-year-old adolescents, resulting in a few modifications to suit the Malaysian variety of English. Psychometric properties were tested on 393 adolescents who attended orthodontic practices and selected schools. Malocclusion was assessed using the Malocclusion Index, an aggregation of Perception of Occlusion Scale and the Aesthetic Component of the Index of Orthodontic Treatment Need, by the subjects (MI-S) and investigators (MI-D). Data were analysed for internal consistency and age-associated invariance, discriminant, construct and criterion validities, reproducibility and floor and ceiling effects using AMOS v.20 and SPSS v.20.
The item Don't like own teeth on video of the Aesthetic Concern (AC) subscale was not relevant to a large proportion of participants (11.7%). Therefore, it was removed and the Malaysian English PIDAQ was analysed based on 22 items instead of 23 items. Confirmatory factor analysis showed good fit statistics (comparative fit index: 0.902, root-mean-square error of approximation: 0.066). Internal consistency was good for the Dental Self-Confidence, Social Impact and Psychological Impact subscales (Cronbach's alpha: 0.70-0.95) but lower (0.52-0.62) though acceptable for the AC subscale as it consisted of only 2 items. The reproducibility test was acceptable (intra-class correlations: 0.53-0.78). For all PIDAQ subscales, the MI-S and MI-D scores of those with severe malocclusion differed significantly from those with no or slight malocclusion. There were significant associations between the PIDAQ subscales with ranking of perceived dental appearance, need for braces and impact of malocclusion on daily activities. There were no floor or ceiling effects.
The adapted Malaysian English PIDAQ demonstrated adequate psychometric properties that are valid and reliable for assessment of psychological impacts of dental aesthetics among Malaysian adolescents.
Determining the role of fomites in the transmission of SARS-CoV-2 is essential in the hospital setting and will likely be important outside of medical facilities as governments around the world make ...plans to ease COVID-19 public health restrictions and attempt to safely reopen economies. Expanding COVID-19 testing to include environmental surfaces would ideally be performed with inexpensive swabs that could be transported safely without concern of being a source of new infections. However, CDC-approved clinical-grade sampling supplies and techniques using a synthetic swab are expensive, potentially expose laboratory workers to viable virus and prohibit analysis of the microbiome due to the presence of antibiotics in viral transport media (VTM). To this end, we performed a series of experiments comparing the diagnostic yield using five consumer-grade swabs (including plastic and wood shafts and various head materials including cotton, synthetic, and foam) and one clinical-grade swab for inhibition to RNA. For three of these swabs, we evaluated performance to detect SARS-CoV-2 in twenty intensive care unit (ICU) hospital rooms of patients including COVID-19+ patients. All swabs were placed in 95% ethanol and further evaluated in terms of RNase activity. SARS-CoV-2 was measured both directly from the swab and from the swab eluent.
Compared to samples collected in VTM, 95% ethanol demonstrated significant inhibition properties against RNases. When extracting directly from the swab head as opposed to the eluent, RNA recovery was approximately 2-4× higher from all six swab types tested as compared to the clinical standard of testing the eluent from a CDC-approved synthetic (SYN) swab. The limit of detection (LoD) of SARS-CoV-2 from floor samples collected using the consumer-grade plastic (CGp) or research-grade plastic The Microsetta Initiative (TMI) swabs was similar or better than the SYN swab, further suggesting that swab type does not impact RNA recovery as measured by the abundance of SARS-CoV-2. The LoD for TMI was between 0 and 362.5 viral particles, while SYN and CGp were both between 725 and 1450 particles. Lastly microbiome analyses (16S rRNA gene sequencing) of paired samples (nasal and floor from same patient room) collected using different swab types in triplicate indicated that microbial communities were not impacted by swab type, but instead driven by the patient and sample type.
Compared to using a clinical-grade synthetic swab, detection of SARS-CoV-2 from environmental samples collected from ICU rooms of patients with COVID was similar using consumer-grade swabs, stored in 95% ethanol. The yield was best from the swab head rather than the eluent and the low level of RNase activity and lack of antibiotics in these samples makes it possible to perform concomitant microbiome analyses. Video abstract.
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