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1.
Nat Rev Dis Primers ; 6(1): 69, 2020 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-32820163

RESUMO

Depression is one of the most common comorbidities of many chronic medical diseases including cancer and cardiovascular, metabolic, inflammatory and neurological disorders. Indeed, the prevalence of depression in these patient groups is often substantially higher than in the general population, and depression accounts for a substantial part of the psychosocial burden of these disorders. Many factors can contribute to the occurrence of comorbid depression, such as shared genetic factors, converging biological pathways, social factors, health behaviours and psychological factors. Diagnosis of depression in patients with a medical disorder can be particularly challenging owing to symptomatic overlap. Although pharmacological and psychological treatments can be effective, adjustments may need to be made for patients with a comorbid medical disorder. In addition, symptoms or treatments of medical disorders may interfere with the treatment of depression. Conversely, symptoms of depression may decrease adherence to treatment of both disorders. Thus, comprehensive treatment plans are necessary to optimize care.

2.
Eur J Pediatr Surg ; 30(3): 232-238, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32422677

RESUMO

With the growing amount of chronic and rare diseases in childhood that often require lifelong treatment, improvement of health-related quality of life is a major goal in therapy. Therefore, the assessment of health-related quality of life from the patient's perspective as a relevant outcome parameter in clinical practice gained increased recognition. Health-related quality of life measures are still rarely applied in the pediatric practice context, although progress has been made in the development of instruments that are now ready for implementation. Inclusion of measures in research and practice is needed to accumulate and critically appraise knowledge about health-related quality of life to broaden the understanding of the child's health status, impacting on the whole family. From the perspective of a pediatric surgeon, knowledge about health-related quality of life of the children and their parents is important since it might influence treatment decisions and facilitates patient-physician communication. This article will review the concept of health-related quality of life, its methodological challenges and the application, and the challenges of health-related quality of life instruments in pediatric practice and health services research.

3.
Eur J Pediatr Surg ; 30(3): 225-231, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32422679

RESUMO

INTRODUCTION: The diagnosis of a rare congenital malformation with necessary surgical treatment is an emotionally stressful event in a parent's life and may impact parental health-related quality of life (HrQoL). We aimed to review the literature on HrQoL in parents and caregivers of pediatric surgical patients with rare congenital malformations and summarize the results. MATERIALS AND METHODS: For this scoping review, a literature search in PubMed was conducted from inception to November 21, 2019. Inclusion and exclusion criteria to select articles were defined a priori. RESULTS: Four articles (published 2014-2018) describing HrQoL in parents of pediatric surgical patients with rare congenital malformations in comparison to population-based references or healthy control groups were identified. Only European studies were found, and sample sizes varied between 15 and 87 participants. Results for parental HrQoL yielded inconsistencies. CONCLUSION: So far, only a few studies with small sample sizes focus on parental HrQoL in pediatric surgical patients with rare congenital malformations. To gain a comprehensive understanding of the impact of a rare congenital malformation on HrQoL of all family members, it is necessary to consider three main aspects: (1) to use both generic- and disease-specific instruments measuring HrQoL of the young patient as well as his/her parents and siblings in larger sample sizes, (2) to collect longitudinal data, and (3) to consider a mixed-method approach.

4.
Rev Lat Am Enfermagem ; 28: e3257, 2020.
Artigo em Inglês, Português, Espanhol | MEDLINE | ID: mdl-32321044

RESUMO

OBJECTIVE: to map the Brazilian scientific production related to the stages of the methodological process for the use of DISABKIDS® instruments and/or forms adapted to Brazil. METHOD: scoping review, with searches conducted on10 electronic databases, plus Google Scholar and contacts with researchers, without restriction of period or language. RESULTS: the mapping identified 90 scientific studies involving 46 instruments. Of these, 11 (23.9%) included the elaboration and/or cultural adaptation of the DISABKIDS® instruments to measure the Quality of Life of children or adolescents with chronic conditions and 35 (76.1%) used the Generic Measures and/or Specific Modules for the semantic validation of other instruments. CONCLUSION: this scoping review allowed a comprehensive evaluation of the use of the DISABKIDS® instrument and forms, in relation to the validation of the instrument adapted to Brazil, presenting a positive advance in the scenario with the development of academic/scientific projects in the country, incorporating the method recommended by the literature for the elaboration, cultural adaptation and validation of instruments and for the systematized and standardized recording of the perception and understanding of the target population about the measure of interest, using DISABKIDS® forms adapted for this purpose.


Assuntos
Comparação Transcultural , Pesquisa/instrumentação , Pesquisa/tendências , Inquéritos e Questionários , Adolescente , Brasil , Criança , Doença Crônica/psicologia , Crianças com Deficiência/psicologia , Humanos , Psicometria , Qualidade de Vida
5.
Eur J Pediatr Surg ; 30(1): 96-103, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31344708

RESUMO

INTRODUCTION: We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments. MATERIALS AND METHODS: A total of 124 Swedish and German families of EA children answered the validated EA-QOL questionnaires (response rate 68%), for evaluation of three HRQOL domains in children 2 to 7 years old (53 parents) and four HRQOL domains in children 8 to 17 years old (62 children/71 parents). Clinical data were collected through medical records and a questionnaire. Statistics included between-group analysis, univariable and stepwise multivariable regression analysis, p < 0.05. RESULTS: Between 2 to 7 years, no primary anastomosis (p = 0.022) and female gender (p = 0.026) predicted worse scores related to "physical health and treatment," and gastrostomy insertion related to "eating" (p = 0.0001), and "social isolation and stress" (p = 0.001). Between 8 to 17 years, no primary anastomosis (child report), prematurity, esophageal dilatation (parent report) predicted poor HRQOL related to "eating" (p < 0.05), associated anomalies to "body perception" (p = 0.031, parent report), female gender (p = 0.018, child report) and severe EA (p = 0.011 child report, p = 0.004 parent report) to "social relationships," and severe EA predicted worse "health and well-being" scores (p = 0.004, parent report). An increased number of digestive symptoms (difficulty swallowing food, heartburn, and vomiting), lowered all EA-QOL domain scores in both age groups (p < 0.001). An increased number of respiratory problems (cough, wheezing, airway infections. breathlessness, and chest tightness), lowered scores in two HRQOL domains among children 2 to 7 years (p < 0.05). CONCLUSION: Impairments within condition-specific HRQOL domains in EA children are found in congenital and surgical subgroups, and notably related to digestive symptoms throughout childhood.

6.
Rev. latinoam. enferm. (Online) ; 28: e3257, 2020. tab, graf
Artigo em Inglês | LILACS, BDENF - Enfermagem | ID: biblio-1101706

RESUMO

Objective: to map the Brazilian scientific production related to the stages of the methodological process for the use of DISABKIDS® instruments and/or forms adapted to Brazil. Method: scoping review, with searches conducted on10 electronic databases, plus Google Scholar and contacts with researchers, without restriction of period or language. Results: the mapping identified 90 scientific studies involving 46 instruments. Of these, 11 (23.9%) included the elaboration and/or cultural adaptation of the DISABKIDS® instruments to measure the Quality of Life of children or adolescents with chronic conditions and 35 (76.1%) used the Generic Measures and/or Specific Modules for the semantic validation of other instruments. Conclusion: this scoping review allowed a comprehensive evaluation of the use of the DISABKIDS® instrument and forms, in relation to the validation of the instrument adapted to Brazil, presenting a positive advance in the scenario with the development of academic/scientific projects in the country, incorporating the method recommended by the literature for the elaboration, cultural adaptation and validation of instruments and for the systematized and standardized recording of the perception and understanding of the target population about the measure of interest, using DISABKIDS® forms adapted for this purpose.


Objetivo: mapear a produção científica brasileira que versa sobre as fases do processo metodológico para a utilização dos instrumentos e/ou formulários DISABKIDS® adaptados para o Brasil. Método: scoping review realizada através da busca em 10 bases de dados eletrônicas, no Google Scholar e por meio de consulta à pesquisadores, sem restrição de período ou idioma. Resultados: o mapeamento identificou 90 estudos científicos que envolveram 46 instrumentos, dos quais 11 (23,9%) foram realizados os processos de elaboração e/ou adaptação cultural dos instrumentos DISABKIDS® para mensuração da Qualidade de Vida de crianças ou adolescentes com condições crônicas e em 35 (76,1%) foram utilizados o Formulários de Impressões Gerais e/ou Folhas Específicas para realizar a validação semântica de outros instrumentos. Conclusão: constatou-se que essa scoping review permitiu avaliação abrangente do uso do instrumento e dos documentos DISABKIDS®. Em relação à validação do instrumento adaptado ao Brasil apresenta avanço positivo do cenário junto ao desenvolvimento de projetos acadêmicos/científicos no país, a partir da incorporação ao método preconizado pela literatura para elaboração, adaptação cultural e validação de instrumentos, do registro sistematizado e padronizado da percepção, bem como do entendimento da população alvo sobre a medida de interesse, ao lançar mão de formulários DISABKIDS® adaptados para esse fim.


Objetivo: mapear la producción científica que se ocupa de las etapas del proceso metodológico para el uso de los instrumentos y/o formularios adaptados DISABKIDS® a Brasil. Método: scoping review, búsqueda realizada en 10 bases de datos electrónicas, en el Google Scholar y por intermedio de consulta a investigadores, sin restricción de período o idioma. Resultados: el mapeo identificó 90 estudios científicos que involucraron 46 instrumentos, de los cuales 11 (23,9%) la elaboración y/o adaptación cultural de los instrumentos DISABKIDS® se realizaron para medir la Calidad de Vida de niños o adolescentes con afecciones crónicas y en 35 (76,1%) utilizaron los Formularios de Impresiones Generales y/o Hojas Específicas para realizar la validación semántica de otros instrumentos. Conclusión: se encontró que esta revisión de alcance permitió una evaluación exhaustiva del uso del instrumento y los documentos DISABKIDS®. En cuanto a la validación del instrumento adaptado a Brasil presenta un avance positivo del escenario en conjunto al desarrollo de proyectos académicos/científicos en el país, desde la incorporación al método recomendado por la literatura para la elaboración, adaptación cultural y validación de instrumentos, desde el registro sistematizado y estandarizado de la percepción, así como la comprensión de la población objetivo sobre la medida de interés mediante el uso de formularios DISABKIDS® adaptados con esta finalidad.


Assuntos
Humanos , Criança , Adolescente , Qualidade de Vida , Brasil , Doença Crônica , Inquéritos e Questionários , Crianças com Deficiência
7.
BMC Pediatr ; 19(1): 330, 2019 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-31510959

RESUMO

BACKGROUND: Esophageal atresia (EA) is a rare congenital malformation, which is characterized by the discontinuity of the esophagus. We investigated the agreement between mothers', fathers', and children's' ratings on health-related quality of life (HRQOL) in children born with EA. We aimed to broaden the understanding of subjective experiences of HRQOL from different perspectives. We hypothesized that the agreement between mother and father ratings would be high, whereas the agreement between child and mother ratings as well as child and father ratings would show more substantial differences. METHODS: We obtained data from 40 families (23 mother-father dyads of children aged 2-7 years and 17 mother-father-child triads of children and adolescents aged 8-18 years) with children born with EA, who were treated in two German hospitals. HRQOL was measured using the generic PedsQL™ questionnaires and the condition-specific EA-QOL© questionnaires. We calculated intraclass coefficients and performed one-way repeated measures ANOVAs to analyze differences for each domain as well as for the total scores. RESULTS: Intraclass correlation coefficients (ICCs) indicated a strong agreement (≥.80) between mother and father reports of children's HRQOL for both generic and condition-specific measurements. The ICCs for the generic HRQOL for mother/father-child-dyads revealed only fair to good agreement, whereas ICCs for condition-specific HRQOL showed high agreement for mother-child and father-child-agreement. Analyses of Covariance revealed differences in mother/father-child agreement in the generic domain School, both parents reporting lower HRQOL scores than the children themselves. Fathers reported significantly higher scores in the condition-specific domain Social than their children. CONCLUSIONS: Results showed that mothers' and fathers' reports corresponded to each other. Nonetheless, these reports might not be interchangeably used because mother-child and father-child agreement showed differences. Children might know the best on how they feel, and parent proxy-report is recommended when reasons such as young age, illness, or cognitive impairments do not allow to ask the child. But parent-report - no matter if reported by mother or father - should only be an additional source to broaden the view on the child's health status and well-being. The current study contributes to a better understanding of the complex family relationships involved when parenting a child born with EA.

8.
J Pediatr Endocrinol Metab ; 32(10): 1089-1101, 2019 Oct 25.
Artigo em Inglês | MEDLINE | ID: mdl-31557127

RESUMO

Background In addition to increasing linear growth, improvement in health-related quality of life (HRQOL) is an important endpoint in the treatment of short statured youth. Hence, condition-specific psychometric valid instruments that adequately assess HRQOL are needed. We aimed to confirmatorily examine the psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire used in a previously reported prospective randomized open-label trial. Methods This trial compared treatment of idiopathic short stature (ISS) in 76 adolescent males with either oral aromatase inhibitors (AIs), subcutaneous daily growth hormone (GH) or a combination treatment (AI/GH) for at least 2 years, demonstrating improvements in HRQOL with the GH and AI/GH interventions. HRQOL was assessed from the child's and parent's perspectives with the short stature-specific QoLISSY and the generic KIDSCREEN questionnaires before and 24 months into treatment. Scale scores and psychometric properties were examined regarding reliability and validity of the QoLISSY questionnaire using the dataset from the published trial. Results The QoLISSY questionnaire showed high internal consistency and satisfactory criterion, convergent and known-groups validity. Scale scores were evenly distributed with no major floor or ceiling effects. Responsiveness analyses suggest that the QoLISSY questionnaire detects significant changes in HRQOL after 2 years of treatment with growth-promoting therapies in children with short stature from both the child's and parent's perspectives. Conclusions The QoLISSY questionnaire is a psychometrically sound, reliable and valid instrument that can explore the experiences associated with short stature, track HRQOL changes over time and in response to treatment, and highlight HRQOL domains that can be improved through intervention.


Assuntos
Estatura , Transtornos do Crescimento/psicologia , Qualidade de Vida , Inquéritos e Questionários/estatística & dados numéricos , Adolescente , Criança , Chile/epidemiologia , Seguimentos , Transtornos do Crescimento/epidemiologia , Humanos , Masculino , Prognóstico , Psicometria , Estados Unidos/epidemiologia
9.
J Relig Health ; 58(6): 2219-2240, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31446605

RESUMO

Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait-multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.


Assuntos
Doença Crônica/psicologia , Psicometria/estatística & dados numéricos , Qualidade de Vida/psicologia , Religião e Medicina , Espiritualidade , Inquéritos e Questionários/normas , Adolescente , Brasil , Criança , Doença Crônica/etnologia , Feminino , Nível de Saúde , Humanos , Masculino , Pais , Procurador , Reprodutibilidade dos Testes , Autorrelato , Tradução
10.
Public Health ; 174: 134-144, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31369927

RESUMO

OBJECTIVE: This article presents empirical evidence on the quality of life (QoL) of Sub-Saharan African (SSA) migrants in Germany, exploring its association with subjective integration and the influence of some socio-economic and sociodemographic characteristics. STUDY DESIGN: This is a cross-sectional study design using quantitative data from 518 SSA migrants collected across the 16 federal states of Germany, and these data were analysed in this study. METHODS: Association between participants' QoL, measured by the four domains of the Bref version of the World Health Organisation QoL measure, subjective integration and sociodemographic characteristics were evaluated using Pearson product-moment correlations. Stepwise multiple linear regressions were performed to explore the contribution of predictor variables on the QoL domain. RESULTS: Participants' age averaged 32.5 years (standard deviation [SD] 7.93). The sample reported a low QoL score with a mean score of 64.3 (SD 14.4, range 70.2). Multiple linear regression analyses revealed that subjective integration, age, education and gender had significant associations and explained up to 27% of the variance in the QoL domain scores. CONCLUSION: The findings of this study support the conclusion that subjective integration positively and significantly associates with the physical health, psychological health, social relationships and environmental domains of SSA migrants' QoL in Germany.


Assuntos
Qualidade de Vida , Integração Social , Migrantes/psicologia , Adulto , África ao Sul do Saara/etnologia , Estudos Transversais , Pesquisa Empírica , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Migrantes/estatística & dados numéricos , Adulto Jovem
11.
Orphanet J Rare Dis ; 14(1): 194, 2019 08 09.
Artigo em Inglês | MEDLINE | ID: mdl-31399110

RESUMO

BACKGROUND: Achondroplasia is the most common form of disproportionate short stature and might affect not only the quality of life of the affected child but also that of the parents. OBJECTIVES: We aimed to investigate the quality of life of children with achondroplasia from child- and parent perspective as well as the parental quality of life. METHODS: Forty-seven children with achondroplasia and 73 parents from a German patient organization participated. We assessed children's quality of life using the generic Peds QL 4.0™ as self-reports for children aged 8-14 and parent-reports for children aged 4-14 years. Parental quality of life we assessed using the short-form 8-questionnaire. RESULTS: Children with achondroplasia showed significantly lower quality of life scores compared to a healthy reference population from both the child- and parent-report (p = ≤.01), except the child-report of the emotional domain (t (46) = - 1.73, p = .09). Parents reported significantly lower mental health in comparison with a German reference population (t (72) = 5.64, p ≤ .01) but no lower physical health (t (72) = .20, p = .85). While the parental quality of life was a significant predictor of parent-reported children's quality of life (F (6,66) = 2.80, p = .02), it was not for child-reported children's quality of life (F (6,66) = .92, p = .49). CONCLUSIONS: Achondroplasia is chronically debilitating. Thus special efforts are needed to address patients' and parent's quality of life needs. This special health condition may influence the daily life of the entire family because they have to adapt to the child's particular needs. Therefore, clinicians should not only focus on the child's quality of life but also those of the parents.


Assuntos
Acondroplasia/fisiopatologia , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Feminino , Alemanha , Humanos , Masculino , Pais , Qualidade de Vida
12.
Health Qual Life Outcomes ; 17(1): 87, 2019 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-31118091

RESUMO

BACKGROUND: Value assessment of vaccination programs against serogroup B invasive meningococcal disease (IMD) is on the agenda of public health authorities. Current evidence on the burden due to IMD is unfit for pinning down the nature and magnitude of the full social and economic costs of IMD for two reasons. First, the concepts and components that need to be studied are not agreed, and second, measures of the concepts that have been studied are weak and inconsistent. Thus, the economic evaluation of the available serogroup B meningococcal (MenB) vaccines is difficult. The aims of this DELPHI study are to: (1) agree on the concepts and components determining the burden of MenB diseases that need to be studied; and (2) seek consensus on appropriate methods and study designs to measure quality of life (QoL) associated with MenB induced long-term sequelae in future studies. METHODS: We designed a DELPHI questionnaire based on the findings of a recent systematic review on the QoL associated with IMD-induced long-term sequelae, and iteratively interviewed a panel of international experts, including physicians, health economists, and patient representatives. Experts were provided with a controlled feedback based on the results of the previous round. RESULTS: Experts reached consensus on all questions after two DELPHI rounds. Major gaps in the literature relate (i) to the classification of sequelae, which allows differentiation of severity levels, (ii) to the choice of QoL measures, and (iii) to appropriate data sources to examine long-term changes and deficits in patients' QoL. CONCLUSIONS: Better conceptualisation of the structure of IMD-specific sequelae and of how their diverse forms of severity might impact the QoL of survivors of IMD as well as their family network and care-providers is needed to generate relevant, reliable and generalisable data on QoL in the future. The results of this DELPHI panel provide useful guidance on how to choose the study design, target population and appropriate QoL measures for future research and hence, help promote the appropriateness and consistency in study methodology and sample characteristics.


Assuntos
Carga Global da Doença , Infecções Meningocócicas/economia , Qualidade de Vida , Técnica Delfos , Feminino , Humanos , Masculino , Infecções Meningocócicas/prevenção & controle , Pessoa de Meia-Idade , Projetos de Pesquisa , Inquéritos e Questionários
13.
Front Pediatr ; 7: 164, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31111024

RESUMO

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.

14.
Qual Life Res ; 28(7): 1725-1750, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31055778

RESUMO

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.


Assuntos
Doença Crônica/psicologia , Nível de Saúde , Grupo Associado , Qualidade de Vida/psicologia , Adolescente , Estudos de Casos e Controles , Criança , Feminino , Humanos , Pais/psicologia , Autorrelato , Apoio Social , Inquéritos e Questionários
15.
Qual Life Res ; 28(9): 2553-2563, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31093848

RESUMO

PURPOSE: Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research. METHODS: A three-step approach was applied. First, a literature review and clinician/expert opinions were used to select relevant PRO questionnaires. Second, focus group discussions, including a group cognitive debriefing for piloting of the questionnaires with children/adolescents with achondroplasia and their parents, were performed in Spain and Germany. Third, a field-test study was conducted to test the psychometric properties of these instruments. RESULTS: Six questionnaires were identified as potentially relevant in children with achondroplasia. In each country, five focus groups including a cognitive debriefing were conducted, and the results narrowed the possibilities to three instruments as most appropriate to assess HRQOL (the generic PedsQL, the height-specific QoLISSY, and the achondroplasia-specific APLES). Results of the field study indicate the QoLISSY and the PedsQL questionnaires to be most appropriate for use in clinical research at this time. CONCLUSION: This selection study is a step forward in assessing the impact of achondroplasia on HRQOL. Of the instruments examined, the QoLISSY and the PedsQL both capture items relevant to children with achondroplasia and have met the psychometric validation criteria needed for use in research. The APLES instrument is a promising tool that should be revisited upon psychometric validation.


Assuntos
Acondroplasia/psicologia , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Qualidade de Vida/psicologia , Adolescente , Criança , Comparação Transcultural , Grupos Focais , Alemanha , Humanos , Masculino , Pais/psicologia , Espanha , Inquéritos e Questionários
16.
Health Qual Life Outcomes ; 17(1): 49, 2019 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-30885197

RESUMO

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.


Assuntos
Transtornos do Crescimento/psicologia , Pais/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários/estatística & dados numéricos , Adolescente , Criança , Nanismo/psicologia , Feminino , Alemanha , Hormônio do Crescimento Humano , Humanos , Masculino , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes
17.
J Pediatr Endocrinol Metab ; 32(3): 215-224, 2019 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-30735483

RESUMO

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.


Assuntos
Estatura , Transtornos do Crescimento/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adolescente , Criança , Pré-Escolar , Feminino , Grécia , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Traduções
18.
Child Care Health Dev ; 45(1): 79-88, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30221367

RESUMO

BACKGROUND: Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age-specific approaches are fundamental in understanding children's health-related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross-cultural understanding of condition-specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA-specific HRQoL questionnaire. METHODS: Eighteen standardized focus groups (FGs) with 51 families of EA children aged 2-17 years in Sweden (n = 30 families) and Germany (n = 21 families) were used to explore HRQoL experiences, which were content analyzed into HRQoL domains. The Swedish HRQoL domains were analyzed first and used as framework to evaluate HRQoL content reported in the German FGs. HRQoL experiences were then categorized as physical, social, and emotional HRQoL burden or resource. RESULTS: One thousand nine hundred eight HRQoL statements were recorded. All nine EA-specific HRQoL domains identified in the Swedish FGs (eating, social relationships, general life issues, communication, body issues, bothersome symptoms, confidence, impact of medical treatment, and additional difficulties due to concomitant anomalies) were recognized in the FGs held in Germany, and no additional EA-specific HRQoL domain was found. The HRQoL dimensions referenced physical burden (n = 655, 34.5%), social burden (n = 497, 26.0%), social resources (n = 303, 15.9%), emotional burden (n = 210, 11.0%), physical resources (n = 158, 8.3%), and emotional resources (n = 85, 4.5%). CONCLUSION: This first international FG study to obtain the EA child and his or her parents' perspective on HRQoL suggests Swedish-German qualitative comparability of the HRQoL domains and content validity for a cross-cultural EA-specific HRQoL questionnaire. EA children make positive and negative HRQoL experiences, but prominently related to physical and social burden, which underlines appropriate follow-up care and future research.


Assuntos
Atresia Esofágica/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adolescente , Criança , Pré-Escolar , Comparação Transcultural , Atresia Esofágica/fisiopatologia , Feminino , Grupos Focais , Alemanha/epidemiologia , Humanos , Masculino , Determinação de Necessidades de Cuidados de Saúde , Pais/psicologia , Pesquisa Qualitativa , Autorrelato , Inquéritos e Questionários , Suécia/epidemiologia
19.
J Pediatr Nurs ; 44: e98-e106, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30503254

RESUMO

PURPOSE: The aims of the study are 1) to gain knowledge of parents' and professionals' perceptions about cancer stricken children's resources, burdens, and ability to pretend play, and 2) to prepare the initiation of a pretend play intervention based on children's needs and included parents' and professionals' feedback. DESIGN AND METHODS: Qualitative design using semi-structured interviews with 13 parents of children diagnosed with leukemia and 15 professionals in the field of pediatric oncology. Themes were derived with content analysis via deductive and inductive coding. RESULTS: Analysis resulted in five topics. (1) Ability to play in the context of leukemia (2) ways of coping with leukemia (3) difficulty in transition to normality (4) parental quality of life and parents' needs (5) perceptions of the potential of pretend play. CONCLUSION: Study results indicate the potential of pretend play interventions for young cancer patients and the need for additional professional support of parents. PRACTICE IMPLICATIONS: Pretend play is a tool children carry with them regardless of their circumstances. If we can enhance their ability to play, doing so should give them an advantage in creative problem solving and creative expression as they deal with a life threatening disease.


Assuntos
Adaptação Psicológica/fisiologia , Ludoterapia/métodos , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/reabilitação , Centros Médicos Acadêmicos , Adolescente , Adulto , Criança , Feminino , Seguimentos , Alemanha , Humanos , Entrevistas como Assunto , Masculino , Papel do Profissional de Enfermagem , Relações Pais-Filho , Enfermagem Pediátrica/métodos , Projetos Piloto , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Pesquisa Qualitativa , Resultado do Tratamento
20.
Eur J Pediatr Surg ; 29(1): 75-84, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30261518

RESUMO

AIM: Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish-German cohort. PATIENTS AND METHODS: Ethical approval was obtained. A total of 192 patients (2-18 years; 134 Swedish; 58 German) were included. Clinical data were reviewed. EA was classified in "severe" and "mild/moderate." Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0) was used in appropriate versions (2-7 years; 8-18 years; self- [SR] and proxy report [PR]) to determine generic HRQoL. RESULTS: Swedish and German samples were clinically and demographically comparable. HRQoL was lower in "severe EA" versus "mild/moderate" (2-18 years; total score; PR 85.6 vs. 73.6; p < 0.001) and Gross A versus Gross C type EA (2-7 years; total score; PR 61.0 vs. 79.3; p = 0.035). Total HRQoL was higher in the Swedish versus German sample (2-18 years; total score; PR 82.3 vs. 72.7; p = 0.002). HRQoL was impaired in the German sample versus healthy population (2-18 years; total score; PR 72.7 vs. 82.7; p = 0.001). In German patients (8-18 years), HRQoL was higher in SR versus PR (80.7 vs. 74.7; p = 0.044). Patients' age and presence of VACTERL association or isolated anorectal malformations did not affect HRQoL. Various differences were detected regarding different dimensions of PedsQL 4.0. CONCLUSION: In this first international study, we found several differences in perception of generic HRQoL. HRQoL appears to be determined by the type of EA and severity rather than patients' age or the presence of typical associated malformations. Country-specific differences may be culturally dependent, but further investigations are suggested. A condition-specific instrument validated for EA may provide additional insights.


Assuntos
Atresia Esofágica/psicologia , Atresia Esofágica/cirurgia , Qualidade de Vida , Adolescente , Fatores Etários , Canal Anal/anormalidades , Canal Anal/cirurgia , Peso ao Nascer , Criança , Pré-Escolar , Atresia Esofágica/diagnóstico , Esôfago/anormalidades , Esôfago/cirurgia , Feminino , Seguimentos , Alemanha , Cardiopatias Congênitas/cirurgia , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Rim/anormalidades , Rim/cirurgia , Deformidades Congênitas dos Membros/cirurgia , Masculino , Diagnóstico Pré-Natal , Autorrelato , Índice de Gravidade de Doença , Fatores Sexuais , Fatores Socioeconômicos , Coluna Vertebral/anormalidades , Coluna Vertebral/cirurgia , Suécia , Traqueia/anormalidades , Traqueia/cirurgia
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