scholarly journals Health-related quality of life in children and adults with X-linked hypophoshatemia

2019 ◽  
Author(s):  
María Isabel Luis Yanes ◽  
Manuel Díaz-Curiel ◽  
Pilar Peris ◽  
Carmen Calderón ◽  
Silvia Marín ◽  
...  

Abstract Background X-linked hypophosphatemia (XLH) is an inherited type of severe rickets leading to deformities and can sometimes become a debilitating condition. Its impact on health-related quality of life (HRQoL) has not been extensively studied. Results Using standardized questionnaires in 21 children and 29 adults with confirmed XLH, we observed significant impaired HRQoL. Children had moderate problems in walking about (61.9%), washing or dressing themselves (9.52%), and performing their usual activities (33.33%). They also felt moderate pain or discomfort (61.9%) and were moderately anxious or depressed (23.81%). The mean EQ-5D-3L/EQ-5D-3L proxy index was 0.79 ± 0.15 and the mean VAS score was 68.33 ± 16.61. Adults had lower HRQoL, particularly with problems in walking (93%, with 3.45% unable to walk independently) and pain (86%, with 3.45% experiencing extreme pain). They also reported problems when carrying out their usual activities (80%) and washing or dressing themselves (>50%), and 65% of adult patients reported symptoms of anxiety and/or depression. The differences compared with the general Spanish population were significant, especially in the mobility and pain/discomfort dimensions of the EQ-5D-5L instrument. Caregivers and parents showed mild reduction in HRQoL, with a mean EQ-5D-5L index value (0.82 ± 0.16) and a mean VAS score (75.48 ± 17.24) smaller than that found in the general Spanish population. Conclusions X-linked hypophosphatemia reduced health-related quality of life despite treatment. These results evidenced limitations of conventional treatment in preventing disease complications, which in turn impaired quality of life in pediatric and adult patients.

2019 ◽  
pp. 35-42
Author(s):  
Tri Vo Duc ◽  
Ngoc Nguyen Phuoc Bich

Background: The prevalence of diabetes mellitus (DM) has been increasing significantly in the world as well as in Viet Nam. DM is a serious and complex chronic disease that affects the physical health of the patients and lower health-related quality of life (HRQoL). Objectives: (1) To analyze the HRQoL in DM outpatients at Hue University of Medicine and Pharmacy Hospital. (2) To evaluate the associated factorsin outpatients with DM. Materials and method: A cross-sectional descriptive study was conducted on 253 outpatients at Hue University of Medicine and Pharmacy Hospital. EuroQoL-5 dimension-5 level (EQ-5D-5L) scale was used for the assessment of HRQoL. Results: The median of the EQ-5D index was 0.85(interquartile range (IQR) = 0.28). The mean of EQ-VAS score was 64.07 (SD=16.99). Aging was associated with lower HRQoL. Unemployed participants had the lowest HRQoL index compared to workers. Higher educational levels led to higher HRQoL. Patients withDM duration of over 10 years had lower HRQoL index than the other groups. Conclusion: The median of the EQ-5D index was 0.85 (IQR = 0.28). The mean of EQ-VAS score was 64.07 (SD=16.99). The HRQoL in diabetic patients was associated with age, occupation, level of education and DM duration. Key words: EQ-5D-5L, quality of life, diabetes mellitus.


Author(s):  
Fitsum Sebsibe Teni ◽  
Ulf-G. Gerdtham ◽  
Reiner Leidl ◽  
Martin Henriksson ◽  
Mimmi Åström ◽  
...  

Abstract Purpose This study aimed to investigate inequality and heterogeneity in health-related quality of life (HRQoL) and to provide EQ-5D-5L population reference data for Sweden. Methods Based on a large Swedish population-based survey, 25,867 respondents aged 30‒104 years, HRQoL is described by sex, age, education, income, economic activity, health-related behaviours, self-reported diseases and conditions. Results are presented by EQ-5D-5L dimensions, respondents rating of their overall health on the EQ visual analogue scale (EQ VAS), VAS index value and TTO (time trade-off) index value allowing for calculation of quality-adjusted life years (QALYs). Ordinary Least Squares and multivariable logistic regression analyses were used to study inequalities in observed EQ VAS score between socioeconomic groups and the likelihood to report problems on the dimensions, respectively, adjusted for confounders. Results In total, 896 different health states were reported; 24.1% did not report any problems. Most problems were reported with pain/discomfort. Women reported worse HRQoL than men, and health deteriorated with age. The strongest association between diseases and conditions and EQ VAS score was seen for depression and mental health problems. There was a socioeconomic gradient in HRQoL; adjusting for health-related behaviours, diseases and conditions slightly reduced the differences between educational groups and income groups, but socioeconomic inequalities largely remained. Conclusion EQ-5D-5L population reference (norms) data are now available for Sweden, including socioeconomic differentials. Results may be used for comparisons with disease-specific populations and in health economic evaluations. The observed socioeconomic inequality in HRQoL should be of great importance for policy makers concerned with equity aspects.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Pakkhesal ◽  
Elham Riyahi ◽  
AliAkbar Naghavi Alhosseini ◽  
Parisa Amdjadi ◽  
Nasser Behnampour

Abstract Background Childhood dental caries can affect the children’s and their parents’ oral health-related quality of life. The aim of the present study was to evaluate the impact of oral and dental health conditions on the oral health-related quality of life in preschool children and their parents. Methods In this descriptive-analytical cross-sectional study, samples were selected from children 3 to 6 years old enrolled in licensed kindergartens using "proportional allocation" sampling. Then, the parents of the children were asked to complete the Early Childhood Oral Health Impact Scale (ECOHIS). Results In this study, 350 children aged 3 to 6 years were evaluated with a mean age of 4.73 years. The mean dmft index (decayed, missed, and filled teeth) was 3.94 ± 4.17. The mean score of oral health-related quality of life was 11.88 ± 6.9, which 9.36 ± 5.02 belongs to the impact on children and 2.52 ± 3.20 to parents' impact. Conclusions The mean score of ECOHIS increased with the dmft index increase in children, indicating a significant relationship between the dmft and ECOHIS score. These outcomes can be used as proper resources to develop preventive policies and promote oral health in young children.


2017 ◽  
Vol 37 (5) ◽  
pp. 461-475 ◽  
Author(s):  
Nicholas L. Rider ◽  
Carleigh Kutac ◽  
Joud Hajjar ◽  
Chris Scalchunes ◽  
Filiz O. Seeborg ◽  
...  

2005 ◽  
Vol 42 (4) ◽  
pp. 355-361 ◽  
Author(s):  
Klaus Sinko ◽  
Reinhold Jagsch ◽  
Verena Prechtl ◽  
Franz Watzinger ◽  
Karl Hollmann ◽  
...  

Objective Evaluation of esthetic, functional, and health-related quality-of-life (HRQoL) outcomes in adult patients with a repaired cleft lip and palate. The treatment for all patients was based on the so-called Vienna concept. Patients/Design Seventy adult patients with a repaired complete cleft lip and palate, ranging in age from 18 to 30 years, were included in the study. Esthetic and functional outcomes were assessed by the patients themselves and by five experts using a visual analog scale. Patients also completed the MOS Short-Form 36 questionnaire to evaluate health-related quality of life. Results Patients rated their esthetic outcome significantly worse than the experts did. No significant differences were observed in the ratings for function. Female patients, especially, were dissatisfied with their esthetic outcomes. In a personal interview, nearly 63% of them asked for further treatment, particularly for upper-lip and nose corrections. The health-related quality-of-life questionnaire revealed low scores for only two subscales, namely social functioning and emotional role. In most subscales of health-related quality of life, patients who desired further treatment had significantly lower scores than did patients who desired no further treatment. Conclusion Surgery of the lip and nose appears to be of prime importance for patients with a cleft lip and palate. Cleft patients who do not request secondary treatment are not always satisfied with the treatment. Patients with realistic expectations in regard to further treatment should be treated by specialists, whereas those with unrealistic expectations should be referred to a clinical psychologist.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Julia Colombijn ◽  
Anna Bonenkamp ◽  
Anita Van Eck van der Sluijs ◽  
Alferso C Abrahams ◽  
Joost Bijlsma ◽  
...  

Abstract Background and Aims Dialysis patients are often prescribed a large number of medications to improve metabolic control and manage co-existing comorbidities. However, several studies suggest that a large number of medications can also detrimentally affect their health-related quality of life (HRQoL). Therefore, this study aims to provide insight in the association between the number of medications and various aspects of HRQoL in dialysis patients. Method A multicentre study was conducted among dialysis patients from Dutch dialysis centres three months after initiation of dialysis as part of the ongoing prospective DOMESTICO study. The number of medications, defined as the number of concomitantly prescribed types of drugs, was obtained from electronic patient records. Primary outcome was HRQoL measured with the Physical Component Summary (PCS) score and Mental Component Summary (MCS) score (range 0-100) of the Short Form 12. Secondary outcomes were number of symptoms (range 0-30) measured with the Dialysis Symptoms Index and self-rated health (range 0-100) measured with the visual analogue scale of the EuroQol-5D-5L. Data were analysed using linear regression and adjusted for possible confounders, including age, sex, dialysis modality, and comorbidity. Analyses for MCS and number of symptoms were performed after categorising patients in tertiles according to their number of medications because assumptions of linearity were violated for these outcomes. Results A total of 162 patients were included. Mean age of patients was 58 ± 17 years, 35% were female, and 80% underwent haemodialysis. The mean number of medications was 12.2 ± 4.5. Mean PCS and MCS were 36.6 ± 10.2 and 46.8 ± 10.0, respectively. The mean number of symptoms was 12.3 ± 6.9 and mean self-rated health 60.1 ± 20.6. In adjusted analyses, PCS was 0.6 point lower for each additional medication (95%CI -0.9 – -0.2; p=0.002). MCS was 4.9 point lower (95%CI -8.8 – -1.0; p=0.01) and 1.0 point lower (95%CI -5.1 – 3.1; p=0.63) for the highest and middle tertiles of medications, respectively, compared to the lowest tertile. Patients in the highest tertile of medications reported 4.1 more symptoms compared to the lowest tertile (95%CI 1.5 – 6.6; p=0.002) but no significant difference in the number of symptoms was observed between the middle and lowest tertile. Self-rated health was 1.5 point lower for each medication (95%CI -2.2 – -0.7; p<0.001). Conclusion After adjustment for comorbidity and other confounders, a higher number of medications was associated with a lower PCS, MCS, and self-rated health in dialysis patients and with more symptoms. This suggests that it may be relevant to weigh expected therapeutic benefits of medication against their possible harmful effects on HRQoL. An unfavourable balance between expected benefits and impact on HRQoL might be ground to deviate from clinical guidelines, especially for patients with a limited life-expectancy and for whom a kidney transplant is unattainable.


Author(s):  
Silva Hovsepian ◽  
Mostafa Qorbani ◽  
Mohammad Esmaeil Motlagh ◽  
Aryan Madady ◽  
Morteza Mansourian ◽  
...  

AbstractBackground:Considering the role of different ethnical, cultural and geographical factors in health related quality of life (HRQOL) as well as the perception of different populations regarding various weight disorders, we aimed to evaluate the association between body mass index (BMI) and HRQOL in Iranian children and adolescents.Methods:This cross-sectional study was part of the Weight Disorders Survey of the CASPIAN-IV study. During this study, students aged 6–18 years from urban and rural areas of 30 provinces of Iran were selected. HRQOL of the students was evaluated by using the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales. The mean of total HRQOL and its subscales were compared in underweight, normal weight, overweight and obese students.Results:The mean of total HRQOL, physical functioning and psychological functioning scores in the total population were 83.31, 84.25 and 82.79, respectively. The mean of the total HRQOL score and the psychosocial score were significantly lower in underweight students aged 6–12 years than in other groups (p<0.05). The mean of the total HRQOL score and psychosocial score were significantly lower in obese students aged 13–18 years than in other groups (p<0.05). Overweight and obesity was negatively associated with total HRQOL, psychosocial and school functioning subscales (p<0.05). There was a significant negative association between emotional functioning and obesity (p<0.05).Conclusions:The findings or this study support the importance of personal perception and cultural norm roles in HRQOL. Given the association between weight disorders and psychosocial health, it is suggested that social and cultural factors have a more crucial role in the HRQOL of children and adolescents.


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