Growth hormone treatment in children with short stature: impact of the diagnosis on parents.

OBJECTIVES: This prospective multicenter study aimed (1) to examine changes in parent-reported health-related quality of life (HRQOL) of children with short stature and the effects of the children's condition on parents themselves within the first year of human growth hormone (hGH) treatment and (2) to predict effects on parents based on main and interaction effects of children's HRQOL and increase in height. METHODS: A total of 110 parents of children aged 4-18 years, diagnosed with idiopathic growth hormone deficiency, small for gestational age, or idiopathic short stature, were recruited from 11 participating German pediatric endocrinologists and asked to fill out the short stature-specific Quality of Life in Short Stature Youth (QoLISSY) Questionnaire before hGH treatment was initiated and one year later. RESULTS: Negative effects of the children's short stature on the parents decrease over time, independent of diagnosis and treatment status. Furthermore, treatment status and height increase moderated the links between children's improved HRQOL as perceived by their parents and decreased caregiving burden. CONCLUSIONS: Based on the children's improved HRQOL and the parent's decrease in caregiving burden, patient-reported outcomes that consider parental and child's perspectives should be considered when deciding on hGH treatment for children.

Psychological (co)morbidity in patients with psoriasis: the impact of pruritus and anogenital involvement on symptoms of depression and anxiety and on body dysmorphic concerns - a cross-sectional study.

OBJECTIVES: While stress plays a paramount role on the onset/exacerbation of psoriasis, via overactivation of the hypothalamic-pituitary-adrenal axis and increased release of pro-inflammatory cytokines, cutaneous inflammatory response induces, in turn, anxiety/depression symptoms, via body disfigurement and stigmatisation. The intensity of pruritus and anogenital involvement are additional risk factors for psychological comorbidity.Aims were to (1) examine the effects of intensity of pruritus and anogenital psoriasis on disease burden and psychological comorbidity and (2) identify the variables associated with the presence of clinically significant depression, anxiety, and dysmorphic concerns. DESIGN: Cross-sectional study. SETTING: Conducted at the University Medical Center Hamburg-Eppendorf (UKE). PARTICIPANTS: 107 patients with psoriasis (mean age = 46.3, SD = 14.6 years; 53.3% male): 64 with none/mild pruritus; 43 with moderate/severe pruritus; 31 with anogenital psoriasis; 76 not affected in the anogenital area. PRIMARY/SECONDARY OUTCOMES MEASURES: Disease severity was assessed with Psoriasis Area and Severity Index and intensity of pruritus was rated by patients. Patient-reported outcomes included the Dermatology Life Quality Index, ItchyQoL, Patient Benefit Index, Perceived Stigmatisation Questionnaire, and Relationship and Sexuality Scale. Psychological morbidity was assessed with the Patient Health Questionnaire, Generalised Anxiety Disorder, and Dysmorphic Concern Questionnaire. RESULTS: Patients with moderate/severe pruritus reported more quality of life impairments, depression, anxiety and dysmorphic concerns, and less treatment benefits than those with none/mild pruritus. Moderate/severe pruritus had a deleterious effect on depression and stigmatisation for patients without anogenital involvement. Less patient benefits were associated with a higher likelihood of clinically significant depression/anxiety. CONCLUSION: Pruritus induces significant burden and psychological morbidity, particularly for patients without anogenital involvement. However, coping strategies used by patients with anogenital psoriasis might be dysfunctional for overall psychosocial adaptation. Patient-centred healthcare might be the best way to prevent psychological comorbidity. ETHICS APPROVAL: Ethics Committee of the Medical Association of Hamburg (process number PV6083, 28 May 2019).

Quality of Life of Children and Adolescents with Short Stature: The Twofold Contribution of Physical Growth and Adaptive Height-Related Cognitive Beliefs.

This study aimed to examine the health-related quality of life (HrQoL), coping, height-related beliefs, and social support of children/adolescents with short stature, the sociodemographic, clinical, and psychosocial variables associated with HrQoL, and the moderating role of sociodemographic and clinical variables on the associations between psychosocial variables and HrQoL. 114 Portuguese children/adolescents with short stature, aged 8-18 years old, completed the Quality of Life in Short Stature Youth questionnaire and the Satisfaction with Social Support Scale. Regression analyses explained 54% of the variance of HrQoL, with significant main effects of current height deviation and height-related beliefs, and a significant interaction effect between beliefs and diagnosis. Results suggest that a multidisciplinary therapeutic approach, not only focused on hormone treatment to boost physical growth, but also including psychosocial interventions focused on the modification of height-related beliefs, may contribute to improve the HrQoL of pediatric patients with short stature.

The triple epidemics of arboviruses in Feira de Santana, Brazilian Northeast: Epidemiological characteristics and diffusion patterns.

Arboviruses are diseases of worldwide importance in the field of communicable diseases. In Brazil, the reemergence of dengue and the emergence of chikungunya and Zika since 2014 have led to epidemic waves of great magnitude and rapid spread. However, their diffusion patterns vary and change over time. This study analyzes the spatial diffusion of the simultaneous circulation of three arboviruses transmitted by the same vector in a large urban space over two epidemic waves in consecutive years. An ecological study of spatial and temporal aggregates on the occurrence of dengue, chikungunya, and Zika, from 2014 to 2019, in Feira de Santana, Bahia State, was carried out using data of cases reported to the national surveillance system. Four different methods were used to analyze the spatial diffusion: Kernel Estimation with sequential maps, cumulative nearest-neighbor ratios (NNI) over time, spatial correlograms and local autocorrelation changes (LISA) over time. From 2014-2019, there were 21,723 confirmed cases of arboviruses. The highest incidences were among women (496.9, 220.2, and 91.0 cases/100,000 women for dengue, chikungunya and Zika respectively). By age group, the highest incidences were from ages 10-19 years old (609.3 dengue cases/100,000), from 60 and more (306.7 chikungunya cases/100,000), and from 0-9 years old (124.1 Zika cases/100,000 inhabitants). The temporal distribution demonstrated two epidemic waves of simultaneous circulation in 2014 and 2015. Kernel maps indicate that arboviruses spread to neighboring areas near the first hotspots, suggesting an expansion diffusion pattern. The NNI, spatial correlograms and LISA changes results suggest expansion patterns for the three arboviruses in all periods. The spatial diffusion pattern of dengue, Zika, and chikungunya in the 2014-2015 epidemics in Feira de Santana was expansion. These findings are useful to guide prevention measures and reduce occurrence in other areas.

Prevalence and incidence of pressure ulcers/injuries in emergency services: A systematic review protocol.

AIM: To develop a systematic review protocol on the prevalence and/or the incidence of pressure ulcers/injuries in adult patients in emergency services. MATERIALS AND METHODS: This protocol was developed according to the Preferred Reporting Items Form Systematic Review and Meta-Analysis Protocols (PRISMA-P) and the Joanna Briggs Institute (JBI) methodology for systematic reviews of prevalence and incidence studies. The inclusion criteria will be based on the CoCoPop mnemonic. The main variables of interest will be the "prevalence" and/or the "incidence" of "pressure ulcers/injuries" (Condition) reported in studies developed in emergency services (Context), with participants aged 18 or more (Population). This Systematic Review Protocol was registered in PROSPERO (CDR42021252906). RESULTS: If meta-analysis is not possible, the syntheses of quantitative data will be presented in a narrative form to address the scope and objectives of this systematic review. Tables, graphs and/or figures will be designed to present the results of the prevalence and the incidence of pressure ulcers/injuries, their body locations and the respective categories/stages. The Systematic Review is currently ongoing. CONCLUSIONS: Prevalence and incidence systematic reviews are an emerging methodology in the field of evidence synthesis. We believe that the systematic review on prevalence and incidence of pressure ulcers/injuries in emergency services can provide useful information for healthcare professionals and policy makers about the dimension of this problem in a specific context. The standardized approach outlined in this systematic review protocol offers a rigorous and transparent method to conduct the review.

Exploring the burden of xerosis cutis and the impact of dermatological skin care from patient's perspective.

BACKGROUND: Xerosis cutis is recognized as a burdensome and stressful condition of the skin, resulting in impaired health-related quality of life (HRQoL). Therefore, it should be treated as a relevant skin disease with detailed care and treatment recommendations. METHODS: This cross-sectional, exploratory study aimed to examine xerosis cutis-related burden from patient's perspective and compare it with individuals without xerosis cutis. Within-group comparisons were also performed among patients with xerosis cutis associated with atopic dermatitis (AD) or not. The second aim was to assess the effect of a routinely applied basic skin care therapy in terms of burden release. RESULTS: Overall, 127 participants were included in the study. Patients with xerosis cutis reported a lower quality of life (p = .041), more dysmorphic concerns (p < .001), and higher general anxiety (p = .029) than individuals without xerosis cutis. The presence of AD was associated with lower HRQoL (p = .023), more depression (p = .008) and anxiety symptoms (p = .003), and more stigmatization experiences at baseline (p < .001). CONCLUSION: Patients with xerosis cutis showed higher psychosocial burden than participants without xerosis cutis. Additionally, patients with xerosis and AD had more psychosocial impairments than patients with xerosis without AD.

Seroprevalence of Chikungunya virus and living conditions in Feira de Santana, Bahia-Brazil.

BACKGROUND: Chikungunya is an arbovirus, transmitted by Aedes mosquitoes, which emerged in the Americas in 2013 and spread rapidly to almost every country on this continent. In Brazil, where the first cases were detected in 2014, it currently has reached all regions of this country and more than 900,000 cases were reported. The clinical spectrum of chikungunya ranges from an acute self-limiting form to disabling chronic forms. The purpose of this study was to estimate the seroprevalence of chikungunya infection in a large Brazilian city and investigate the association between viral circulation and living condition. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a population-based ecological study in selected Sentinel Areas (SA) through household interviews and a serologic survey in 2016/2017. The sample was of 1,981 individuals randomly selected. The CHIKV seroprevalence was 22.1% (17.1 IgG, 2.3 IgM, and 1.4 IgG and IgM) and varied between SA from 2.0% to 70.5%. The seroprevalence was significantly lower in SA with high living conditions compared to SA with low living condition. There was a positive association between CHIKV seroprevalence and population density (r = 0.2389; p = 0.02033). CONCLUSIONS/SIGNIFICANCE: The seroprevalence in this city was 2.6 times lower than the 57% observed in a study conducted in the epicentre of the CHIKV epidemic of this same urban centre. So, the herd immunity in this general population, after four years of circulation of this agent is relatively low. It indicates that CHIKV transmission may persist in that city, either in endemic form or in the form of a new epidemic, because the vector infestation is persistent. Besides, the significantly lower seroprevalences in SA of higher Living Condition suggest that beyond the surveillance of the disease, vector control and specific actions of basic sanitation, the reduction of the incidence of this infection also depends on the improvement of the general living conditions of the population.

Assessing the quality of life of people with chronic wounds by using the cross-culturally valid and revised Wound-QoL questionnaire.

The Wound-QoL is an often used reliable and valid measure, originally developed in Germany. It has been sequentially translated and validated for other languages/countries, for the measurement of health-related quality of life (HRQoL) in patients with chronic wounds. However, a study from the United States postulated its benefits from further adaptations. Furthermore, some patients struggled to provide an answer for some of the items. We aimed to test the cross-cultural structure and psychometric performance of the questionnaire to suggest necessary revisions. This cross-sectional analysis of existing data sets included 1185 patients from Germany, the US, the Netherlands, Spain, Sweden, and Israel. Patients in the U.S. Wound Registry completed the Wound-QoL during routine care. Different studies comprised the data collection in the other countries. Almost half of the patients were women (48.4%). Furthermore, 42.6% were diagnosed with leg ulcers. Their average age was 66 years. We used a confirmatory factor analysis and an unconstrained graded response model. We revised and shortened the Wound-QoL from 17 to 14 items. In addition, we supported the cross-cultural metric invariance of the revised Wound-QoL questionnaire. The new version with 14 items and three dimensions revealed good psychometric properties with Cronbach's alpha (α) of 0.913 for the total score, and 0.709-0.907 for different dimensions. Furthermore, we provided strict invariance for different clinical variables. In conclusion, the revised Wound-QoL is a reliable and cross-cultural instrument to measure the HRQoL on patients with chronic wounds. Future studies should analyse the revised Wound-QoL for convergent validity with generic HRQoL questionnaires as well as for determining its sensitivity to clinical change.

Development and psychometric evaluation of the U.S. English Wound-QoL questionnaire to assess health-related quality of life in people with chronic wounds.

People with chronic wounds perceive an impaired health-related quality of life (HRQoL). For the assessment of HRQoL, valid instruments are needed. Therefore, the Wound-QoL questionnaire was originally developed and psychometrically validated for use in Germany. As the Wound-QoL is to be used in numerous countries, international versions are required. Therefore, this study aimed to psychometrically validate the U.S. English Wound-QoL version. Upon translation into U.S. English, psychometric testing was performed based on cross-sectional data deriving from the U.S. Wound Registry. Besides descriptive statistics, internal consistency and concurrent validity were tested. In addition, a graded response model was used. The sample consisted of 599 people with chronic wounds of different etiologies. Participants were between 18 and 95 years old, mean age was 63.7 (SD = 15.9) years. Gender was distributed almost equally, with 47.4% female patients. High internal consistency, low floor and ceiling effects of the subscales could be largely confirmed. The internal consistency of the global score was excellent, with α > .9. Concurrent validity between the Wound-QoL and pain, the surface area of the largest wound, total surface area, and total number of active wounds could be confirmed. In contrast, item response theory (IRT) analyses could not fully confirm the factorial model underlying the Wound-QoL subscales. Furthermore, the items regarding smell and discharge and the items on problems with hitting the wound against something, climbing stairs and feeling dependent on help from others showed a low item information in their belonging dimensions. In conclusion, the newly validated Wound-QoL is available for HRQoL measurement in people with chronic wounds in the United States. It showed good psychometric properties, demonstrating its reliability and validity. Therefore, the instrument may be used to assess HRQoL in clinical practice. However, IRT analyses showed that the instrument may benefit from future refinement.

Yellow fever transmission in non-human primates, Bahia, Northeastern Brazil.

Yellow fever virus (YFV) causes a clinical syndrome of acute hemorrhagic hepatitis. YFV transmission involves non-human primates (NHP), mosquitoes and humans. By late 2016, Brazil experienced the largest YFV outbreak of the last 100 years, with 2050 human confirmed cases, with 681 cases ending in death and 764 confirmed epizootic cases in NHP. Among affected areas, Bahia state in Northeastern was the only region with no autochthonous human cases. By using next generation sequence approach, we investigated the molecular epidemiology of YFV in NHP in Bahia and discuss what factors might have prevented human cases. We investigated 47 YFV positive tissue samples from NHP cases to generate 8 novel YFV genomes. ML phylogenetic tree reconstructions and automated subtyping tools placed the newly generated genomes within the South American genotype I (SA I). Our analysis revealed that the YFV genomes from Bahia formed two distinct well-supported phylogenetic clusters that emerged most likely of an introduction from Minas Gerais and Espírito Santo states. Vegetation coverage analysis performed shows predominantly low to medium vegetation coverage in Bahia state. Together, our findings support the hypothesis of two independent YFV SA-I introductions. We also highlighted the effectiveness of the actions taken by epidemiological surveillance team of the state to prevented human cases.

Characteristics and determinants of patient burden and needs in the treatment of chronic spontaneous urticaria.

BACKGROUND: Treatment of chronic spontaneous urticaria (CSU) is founded on evidence-based guidelines. However, specific patient needs and benefits of therapy have not been outlined at the guideline level. OBJECTIVES: The aim of this study was to characterise the specific needs and treatment goals in chronic spontaneous urticaria from the patient's perspective. MATERIALS AND METHODS: This cross-sectional study was conducted in four German outpatient dermatology clinics. Patient needs and potential therapy goals were determined with the validated Patient Needs Questionnaire (PNQ) using a specific version for chronic urticaria. Further instruments to characterise the link between patient needs and disease burden were disease-specific (CU-Q2oL), skin-generic (DLQI) and health-generic (EQ VAS) scales. RESULTS: Data from 103 patients were analysed (age: 43.92 ± 14.96 years; 71.4% female). Among the most important therapeutic goals were the absence of visible skin lesions (92.3% important/very important), to be free of itching (91.5%) and the desire to be healed of all skin defects (89.5%). All 26 items were found to be quite important/very important by at least 30% of the respondents. Specific profiles of patient needs were found to be related to sex and disease duration. CONCLUSION: Innovative drugs and patient-centred individualised treatment may increase overall benefits. Regardless of the treatment chosen, shared decision making in the management of the disease should be a goal.

Disease burden and treatment needs of patients with psoriasis in sexually-sensitive and visible body areas: results from a large-scale survey in routine care.

Psoriasis may cause considerable disease burden. The involvement of sexually-sensitive/visible body areas has been associated with decreased quality of life (QoL), more depressive symptoms and stigmatisation experiences. To characterise the topical distribution of psoriasis in sexually-sensitive and visible areas, to examine its impact on QoL and to determine which specific patient needs should be addressed in routine care. Patients with psoriasis vulgaris were recruited within a cross-sectional nationwide survey, involving 157 randomly assigned German dermatology practices/clinics. The main outcome measures were the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), the Patient Needs Questionnaire (PNQ) and a grid scheme for topical distribution of psoriasis. The sample included 2,009 patients (43.7% female; 21.8% ≥ 65 years; 64.2% with lesions in sexually-sensitive areas and 86.2% with lesions in visible areas). Patients with concomitant involvement of sexually-sensitive and visible areas presented increased DLQI impairments relative to patients with no involvement of sexually-sensitive or visible areas (F(3, 1723) = 4.091, p = 0.007). Significant differences were also found for patient needs dimensions (PNQ) depending on the body areas affected (F(15, 4602) = 2.936, p < 0.001). Significant effects of gender and age group were also observed. Increased disease severity, lesions in both sexually-sensitive/visible or only visible areas, and increased QoL impairment were associated with specific patient needs. These results highlight the need for proactive evaluation of difficult-to-communicate impairments and the requirements for patient-centred routine care.

Sex-related impairment and patient needs/benefits in anogenital psoriasis: Difficult-to-communicate topics and their impact on patient-centred care.

Genital psoriasis affects 2-5% of psoriasis patients; generalised plaque or intertriginous psoriasis also affects the genital area in 29-40% of cases. Anogenital psoriasis has been associated with significant quality of life impairments, but little is known about specific patient needs/treatment goals. This study aimed to examine the overall and sex-related disease burden, patient needs and treatment benefits in patients with anogenital psoriasis, compared to patients with psoriasis not affecting the anal/genital areas. Within the cross-sectional nationwide survey, 2,009 participants were consecutively recruited in 157 randomly assigned German dermatology practices and clinics, according to the following inclusion criteria aged 18 years or over; diagnosis of psoriasis vulgaris; ability to answer the questionnaires; and written informed consent. Based on a high-resolution grid on the topical distribution of psoriasis, two groups were formed: anogenital psoriasis (n = 622) and comparison group (n = 1,303). Clinical severity was assessed by the Psoriasis Area and Severity Index (PASI). Patients completed the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), and the Patient Benefit Index (PBI). Patients with anogenital psoriasis had higher PASI (13.0±10.6 vs. 8.9±7.6, P < 0.001) and more DLQI impairments (8.9±6.9 vs. 7.0±6.2, P = 0.002) than controls. At the item-level, they also reported more sex-related DLQI impairments (DLQI-i9: 0.5±0.8 vs. 0.3±0.7, P < 0.001) and treatment needs (PBI-i17: 2.2±1.8 vs. 1.9±1.8, P = 0.001). A great percentage of missing/not-relevant responses was found for sex-related items (23.3-41.9%). These results suggest that the assessment of sex-related impairments and treatment needs should be prioritised in patients with anogenital psoriasis. Questionnaires may be used as a less uncomfortable way for patients to discuss their genital lesions and sexual function during healthcare visits. However, the great percentage of missing/not-relevant responses to sex-related items calls for in-depth assessments and effective patient-physician communication regarding these sensitive topics.

Sociodemographic, sexual, and reproductive variables associated with pregnancy among adolescents from low socioeconomic background.

Adolescent pregnancy remains a public health concern in both developed and developing countries. Portugal and Brazil represent some of the best examples of this phenomenon. The present study aimed to identify sociodemographic, sexual, and reproductive health-related variables associated with adolescent pregnancy among students from low socioeconomic backgrounds in both countries. The sample included 984 female adolescents, among whom 215 became pregnant. Living with a partner and lack of information about sex and contraception from the family were the best explicative factors for pregnancy occurrence in both countries. Country-specific variables were also identified. Our results may contribute to developing global preventive interventions, addressing the school as an ideal setting for primary intervention and considering culture-specific characteristics of high-risk populations.

Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment.

Aside from clinical endpoints like height gain, health-related quality of life has also become an important outcome indicator in the medical field. However, the data on short stature and health-related quality of life is inconsistent. Therefore, we examined changes in health-related quality of life in German children with idiopathic growth hormone deficiency or children born small for gestational age before and after 12 months of human growth hormone treatment. Children with idiopathic short stature without treatment served as a comparison group. At baseline, health-related quality of life data of 154 patients with idiopathic growth hormone deficiency (n = 65), born small for gestational age (n = 58), and idiopathic short stature (n = 31) and one parent each was collected. Of these, 130 completed health-related quality of life assessments after 1-year of human growth hormone treatment. Outcome measures included the Quality of Life in Short Stature Youth questionnaire, as well as clinical and sociodemographic data. Our results showed that the physical, social, and emotional health-related quality of life of children treated with human growth hormone significantly increased, while untreated patients with idiopathic short stature reported a decrease in these domains. Along with this, a statistically significant increase in height in the treated group can be observed, while the slight increase in the untreated group was not significant. In conclusion, the results showed that human growth hormone treatment may have a positive effect not only on height but also in improving patient-reported health-related quality of life of children with idiopathic growth hormone deficiency and children born small for gestational age.

Do 8- to 18-year-old children/adolescents with chronic physical health conditions have worse health-related quality of life than their healthy peers? a meta-analysis of studies using the KIDSCREEN questionnaires.

PURPOSE: This meta-analytic review aimed to estimate the magnitude of health-related quality of life (HrQoL) impairments, as assessed by the KIDSCREEN questionnaires, both self- and parent-reported, in 8- to 18-years-old children/adolescents with chronic health conditions. METHODS: To identify studies using the KIDSCREEN questionnaires, three electronic databases (PubMed, PsycINFO, EBSCOhost Psychology & Behavioral Sciences) were searched. The final search (February 14-15, 2018) revealed 528 non-duplicated articles, of which 23 papers (21 studies) directly compared the HrQoL of pediatric patients to community/healthy controls and were included in the meta-analysis. Pooled mean differences (MD) with 95% CIs were estimated using the inverse-variance random-effects method. RESULTS: Of the 21 studies, 16 used self-reports, one used parent-reports and four adopted a multi-informant approach. Self-reported data were retrieved from 20 studies (4852 cases/28,578 controls), and parent-reported data were retrieved from four studies (511 cases/433 controls). Pediatric patients presented significant HrQoL impairments in the domains of physical well-being (MD = - 4.84, 95% CI - 6.44/- 3.24 for self-reports; MD = - 6.86, 95% CI - 10.42/- 3.29 for parent-reports) and peers and social support (MD = - 1.29, 95% CI - 2.25/- 0.34 for self-reports; MD = - 3.90, 95% CI - 5.28/- 2.52 for parent-reports), compared to community/healthy peers. Between-studies heterogeneity was explained by diagnostic categories, instrument version and informants. CONCLUSIONS: The identification of significant HrQoL impairments among pediatric patients, specifically in the physical and social domains, highlights the importance of routine psychosocial assessment and intervention in primary pediatric healthcare services. Specific recommendations include the use of profile measures, both self- and parent-reports, and the prioritization of oncology, endocrinology and neurology services.

Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment.

BACKGROUND: The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH). METHOD: The instrument was administered to children with idiopathic growth hormone Deficiency (IGHD) and small for gestational age (SGA) before and after 12 month of hGH treatment. Children with idiopathic short stature (ISS) served as a reference group receiving no treatment. Psychometric testing included scale distribution characteristics, reliability (internal consistency), criterion-and convergent validity (correlations with the generic KIDSCREEN-Index, inter-correlations among QOLISSY subscales), known-group validity (treatment status, height SDS), and responsiveness analysis (ability to detect change). RESULTS: One hundred fifty-two parents and 66 children/adolescents completed both HRQOL assessments. The QoLISSY demonstrated good reliability with Cronbach's alpha > .70. Moderate significant correlations between QoLISSY domains and the KIDSCREEN-10 Index supported criterion validity. Statistically significant differences in HRQOL were observed between treatment groups at baseline with children who were about to start treatment reporting a significantly lower HRQOL compared to the children who will not receive treatment. No significant differences were found between the level of short stature based on height SDS scores (≤ - 2 SDS, > - 2 SDS). Furthermore, the instrument detected significant changes in HRQOL between the treated and the untreated group in patient-reports. CONCLUSIONS: In conclusion, the scales showed satisfactory reliability, adequate validity and ability to detect change in self-reported HRQOL within GH treatment. Findings support QoLISSY's further use in clinical trials, offering the opportunity to adequately assess HRQOL from the patients' and caregivers' perspective to improve patient-centered care.

Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire.

Background The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a condition-specific instrument for measuring the health-related quality of life (HRQoL) in short statured children/adolescents from patients' and parents' perspectives. The aim of this study was to investigate the psychometric properties of the Greek version of the QoLISSY questionnaire. Methods The original European QoLISSY scales were translated into Greek following the guidelines for linguistic validation and applied to 184 dyads of children 8-18 years old and their parents, as well as to 14 parents of children 4-7 years old in Greece. The field testing responses to the Greek version of QoLISSY were analyzed. Results The qualitative analysis of the Greek data provided results consistent with the European sample. The subsequent field test showed acceptable internal consistency (Cronbach α between 0.67-0.93) and high test-retest reliability (intraclass correlation coefficients [ICC] ≥0.70). Correlations with the generic KIDSCREEN questionnaire indicated good convergent validity. Confirmatory factor analysis (CFA) also yielded acceptable results. Higher HRQoL for taller children suggests that QoLISSY was able to detect significant height-related differences. Conclusions The Greek version of the QoLISSY questionnaire is psychometrically sound and its use is recommended in further clinical research to ascertain the impact of short stature (SS) and treatments in Greek children/adolescents and families.

Establishing priorities for psychological interventions in pediatric settings: A decision-tree approach using the DISABKIDS-10 Index as a screening instrument.

Most children and adolescents with chronic health conditions have impaired health-related quality of life and are at high risk of internalizing and externalizing problems. However, few patients present clinically significant symptoms. Using a decision-tree approach, this study aimed to identify risk profiles for psychological problems based on measures that can be easily scored and interpreted by healthcare professionals in pediatric settings. The participants were 736 children and adolescents between 8-18 years of age with asthma, epilepsy, cerebral palsy, type-1diabetes or obesity. The children and adolescents completed self-report measures of health-related quality of life (DISABKIDS-10) and psychological problems (Strengths and Difficulties Questionnaire). Sociodemographic and clinical data were collected from their parents/ physicians. Children and adolescents were classified into the normal (78.5%) or borderline/clinical range (21.5%) according to the Strengths and Difficulties Questionnaire cut-off values for psychological problems. The overall accuracy of the decision-tree model was 78.1% (sensitivity = 71.5%; specificity = 79.9%), with 4 profiles predicting 71.5% of borderline/clinical cases. The strongest predictor of psychological problems was a health-related quality of life standardized score below the threshold of 57.5 for patients with cerebral palsy, epilepsy or obesity and below 70.0 for patients with asthma or diabetes. Other significant predictors were low socio-economic status, single-parent household, medication intake and younger age. The model showed adequate validity (risk = .28, SE = .02) and accuracy (area under the Receiver Operating Characteristic curve = .84; CI = .80/.87). The identification of pediatric patients at high risk for psychological problems may contribute to a more efficient allocation of health resources, particularly with regard to their referral to specialized psychological assessment and intervention.

Children's psychosocial functioning and parents' quality of life in paediatric short stature: The mediating role of caregiving stress.

OBJECTIVES: On the basis of the multidimensional model of the caregiving process, this study aimed (a) to compare the levels of quality of life (QoL) and psychological problems of children with short stature and the levels of caregiving stress and QoL of their parents, between diagnostic, treatment, and current height deviation groups, and (b) to examine the direct and indirect links, via caregiving stress, between children's psychosocial functioning and their parents' QoL. METHOD: The sample was collected in 5 European countries and comprised 238 dyads of 8- to 18-year-old children and adolescents with a clinical diagnosis of growth hormone deficiency or idiopathic short stature and one of their parents. The children completed self-report measures of height-related QoL (Quality of Life in Short Stature Youth Core Module) and psychological problems (Strengths and Difficulties Questionnaire); the parents reported on their own QoL (EUROHIS-QOL-8 Index) and caregiving stress (Quality of Life in Short Stature Youth Effects on Parents subscale). RESULTS: Children who were treated and who achieved normal height reported better QoL compared to those untreated and with current short stature. Parents of children with idiopathic short stature and current short stature presented greater caregiving stress than parents of children with growth hormone deficiency and achieved normal height. Children's better psychosocial functioning was indirectly associated with parents' better QoL, via less caregiving stress, and these links were invariant across diagnoses, treatment status, and current height deviation. CONCLUSIONS: These results suggest that, along with growth hormone treatments, multidisciplinary interventions in paediatric endocrinology should be family-centred, by targeting both the children's psychosocial functioning and the parents' stress, in order to improve individual and family adaptation.