Cross-sectional survey on disease severity in Japanese patients with harlequin ichthyosis/ichthyosis: Syndromic forms and quality-of-life analysis in a subgroup

2018 ◽  
Vol 92 (2) ◽  
pp. 127-133 ◽  
Author(s):  
Chiaki Murase ◽  
Takuya Takeichi ◽  
Akitaka Shibata ◽  
Masahiro Nakatochi ◽  
Fumie Kinoshita ◽  
...  
Author(s):  
Danielle LoRe ◽  
Christopher Mattson ◽  
Dalia M. Feltman ◽  
Jessica T. Fry ◽  
Kathleen G. Brennan ◽  
...  

Objective The study aimed to explore physician views on whether extremely early newborns will have an acceptable quality of life (QOL), and if these views are associated with physician resuscitation preferences. Study Design We performed a cross-sectional survey of neonatologists and maternal fetal medicine (MFM) attendings, fellows, and residents at four U.S. medical centers exploring physician views on future QOL of extremely early newborns and physician resuscitation preferences. Mixed-effects logistic regression models examined association of perceived QOL and resuscitation preferences when adjusting for specialty, level of training, gender, and experience with ex-premature infants. Results A total of 254 of 544 (47%) physicians were responded. A minority of physicians had interacted with surviving extremely early newborns when they were ≥3 years old (23% of physicians in pediatrics/neonatology and 6% in obstetrics/MFM). The majority of physicians did not believe an extremely early newborn would have an acceptable QOL at the earliest gestational ages (11% at 22 and 23% at 23 weeks). The majority of physicians (73%) believed that having an extremely preterm infant would have negative effects on the family's QOL. Mixed-effects logistic regression models (odds ratio [OR], 95% confidence interval [CI]) revealed that physicians who believed infants would have an acceptable QOL were less likely to offer comfort care only at 22 (OR: 0.19, 95% CI: 0.05–0.65, p < 0.01) and 23 weeks (OR: 0.24, 95% CI: 0.07–0.78, p < 0.02). They were also more likely to offer active treatment only at 24 weeks (OR: 9.66, 95% CI: 2.56–38.87, p < 0.01) and 25 weeks (OR: 19.51, 95% CI: 3.33–126.72, p < 0.01). Conclusion Physician views of extremely early newborns' future QOL correlated with self-reported resuscitation preferences. Residents and obstetric physicians reported more pessimistic views on QOL. Key Points


2021 ◽  
Vol 33 (3) ◽  
pp. 249-264
Author(s):  
Gert Scheerder ◽  
Sandra Van den Eynde ◽  
Patrick Reyntiens ◽  
Ria Koeck ◽  
Jessika Deblonde ◽  
...  

This cross-sectional survey explored the quality of life in 505 people living with HIV in Belgium. Several domains of quality of life were impaired: 26% had been diagnosed with depression and 43% had weak social support. HIV-related stigma is still widespread, with 49% believing most people with HIV are rejected and 65% having experienced discrimination due to HIV. The impact of HIV was limited on professional life, but 40% experienced a negative impact on life satisfaction and 41% a negative impact on sexual life. For several domains, people with a recent diagnosis of HIV and long-term survivors had significantly worse scores. This survey also uncovered strengths of people living with HIV, such as positive coping and HIV self-image. Expanding the scope of quality of life in people living with HIV may provide a more complete picture of relevant life domains that may be impacted by living with HIV, but this needs further validation.


2018 ◽  
Vol 21 ◽  
pp. S199-S200 ◽  
Author(s):  
DT Gold ◽  
SA Williams ◽  
RJ Weiss ◽  
Y Wang ◽  
C Watkins ◽  
...  

2020 ◽  
Vol 7 (10) ◽  
pp. 2015
Author(s):  
Shrish Bhatnagar ◽  
Roshan R. Mane ◽  
Irfan A. Shaikh ◽  
Ganesh Kadhe

Background: Functional gastrointestinal disorders (FGIDs) in infants and toddlers possess extensive burden to the parents and healthcare professionals. Guidelines addressing the practices in diagnosis and management of FGIDs in infants in Indian subcontinent is unavailable. Hence this study assessed current knowledge, attitude and practice of pediatricians in diagnosis and treatment of FGIDs.Methods: A cross-sectional survey based on a structured questionnaire assessed pediatrician’s knowledge about prevalence and profile of most common GI disorders in pediatric age groups (birth to 12 months), association of FGIDs with different feeding practices, impact of FGID on quality of life, various management options and physician preferred method of treatment.Results: Colic was rated as the most common GI disorder, followed by gassiness/fussiness, regurgitation and constipation. About 59% pediatricians come across FGIDs more in formula-fed infants compared to breastfed infants (4.2%) and 93.9% pediatricians affirm that FGIDs affect quality of life. Approximately 91% pediatricians believed reassurance and education was the best management option, which was also reported as the preferred mode of management by about 89% pediatricians, whereas pharmacological therapies were the least preferred (1.6%). For breastfed infants suffering with regurgitation, colic or constipation, majority pediatricians opted for switching to 100% whey partially hydrolysed protein formula; sequentially followed by use of pre/probiotics and switch to extensively hydrolyzed protein formula.Conclusions: Parental education and reassurance offer an ideal mode of management of FGIDs. Partially hydrolysed protein formula may be considered one of the best management options irrespective of the FGID condition in infants who are breastfeed.


PLoS ONE ◽  
2021 ◽  
Vol 16 (2) ◽  
pp. e0246409
Author(s):  
Qi Chen ◽  
Li Ran ◽  
Mengying Li ◽  
Xiaodong Tan

Objective To evaluate health-related quality of life (HRQoL) of middle-aged and elderly people with hypertension in Enshi, China, and to explore the important correlates defining HRQoL. Methods From April through July 2018, a self-monitoring intervention program for hypertension control was implemented in a remote area of central China. Participants completed a cross-sectional survey which included demographic characteristics, the Health-related Quality of Life Survey, and the Pittsburgh Sleep Quality Index Survey. Univariate analysis was performed by analysis of variance, and multiple linear regression analysis was used to analyze the influencing factors of HRQoL in middle-aged and elderly hypertensive patients. In the multivariate analysis, the variables with P≤0.05 in the single factor analysis were combined with the professional significance to establish a multiple linear regression model. Results Information from 500 participants was available for analysis. Among them, the scores of PCS and MCS was 31.66 ± 9.50 and 41.38 ± 10.69, respectively. Multivariable regression analyses showed that higher education and sleep quality, and moderate physical activity (30 minutes for at least five days a week) had a positive influence on PCS scores. Higher monthly family income (3,000–5,000 ¥) and sleep quality, regular tea-drinking, having 30 minutes of moderate physical activity at least five days a week were positively associated with MCS scores. Conclusion The overall HRQoL for rural middle-aged and elderly hypertensive patients in Xuan’en county of Hubei province was poor. Effective relevant measures for the above factors were urgently needed to improve the quality of life for the elderly in rural areas. Awareness of these relevant factors could help health care professionals provide better supportive care.


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