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1.	Andersson, Marie, 1977, et al. (författare) Mortality rates, cause and risk factors in people with spina bifida, register-based study over five decades 2024 Ingår i: ACTA PAEDIATRICA. - 0803-5253 .- 1651-2227. ; 113:8, s. 1916-1926 Tidskriftsartikel (refereegranskat)abstract AimCare for people with spina bifida can be improved. This may be done by evaluating mortality rates and causes of death.MethodsBetween 1973 and 2021, 1735 people with spina bifida appeared in registers of the Swedish population. Survival rates and causes of death were calculated according to age and decade.ResultsOver almost 50 years, the prevalence of spina bifida decreased from 5.2 to 1.2 per 10 000 births. Mortality fell sharply during the first year of life, with survival rising from 75% to 94%. For children aged 2-18 years and adults, mortality rates were low and differences between decades were minimal. Causes of childhood deaths were congenital abnormalities, hydrocephalus and infections, the latter two also in adults. Adult causes also included self-inflicted injuries and substance abuse, with suicidal or unclear intent, both more common than in the general population. Bladder malignancies were also more frequent, although after reconstructive bladder surgery, mortality rates were similar.ResultsOver almost 50 years, the prevalence of spina bifida decreased from 5.2 to 1.2 per 10 000 births. Mortality fell sharply during the first year of life, with survival rising from 75% to 94%. For children aged 2-18 years and adults, mortality rates were low and differences between decades were minimal. Causes of childhood deaths were congenital abnormalities, hydrocephalus and infections, the latter two also in adults. Adult causes also included self-inflicted injuries and substance abuse, with suicidal or unclear intent, both more common than in the general population. Bladder malignancies were also more frequent, although after reconstructive bladder surgery, mortality rates were similar.ConclusionSurvival in the first year of life increased in children with spina bifida, whereas there was no difference in survival rates between adults born between 1973 and 1999. For adults, proactive prevention methods regarding self-inflicted injury, substance abuse and bladder cancer are warranted.
2.	Ax, S. O., et al. (författare) Parent-Reported Feeding Difficulties among Children Born with Esophageal Atresia: Prevalence and Early Risk Factors 2021 Ingår i: European Journal of Pediatric Surgery. - : Georg Thieme Verlag KG. - 0939-7248 .- 1439-359X. ; 31:1, s. 069-075 Tidskriftsartikel (refereegranskat)abstract Introduction We aimed to describe the prevalence of observable feeding difficulties during mealtimes among children with repaired esophageal atresia (EA) and to determine their early predictors. Materials and Methods A survey, based on parents' reports and concerning difficulties in EA children's nutritional intake, was performed with the help of 114 families of 2 to 17-year-old EA patients. Neonatal and clinical/surgical data were collected from medical records. Comparisons were made of the prevalence n (%) of feeding difficulties between children in three age groups (2 to 7 years, 8 to 12 years, or 13 to 17 years of age) using the Mantel-Haenszel chi-square test. Logistic regression identified outcome predictors (odds ratio: 95% confidence interval). Predictors with p <= 0.1 in the univariable analysis were included in multiple regression analysis ( p <0.05). Results Seventy-five percent of the young children aged 2 to 7, (median number of feeding difficulties: 2), 61% of school-aged children aged 8 to 12 (median number of feeding difficulties: 1), and 60% patients in the teenage group, aged 13 to 17, (median number of feeding difficulties: 1), reported feeding difficulties. Surgical complications after EA repair independently predicted children having a gastrostomy ( p 0.01), using a food infusion pump ( p <= 0.01), taking small portions to facilitate eating ( p =0.01), and needing >30minutes to finish a main meal ( p =0.02). Congenital independent predictors were VACTERL, low birth weight, and preterm birth. Conclusion Parentally observed feeding difficulties were commonly reported during early childhood, although prevalence decreases in older age groups. Several congenital and surgical factors were identified as independent predictors of complicated nutritional intake patterns.
3.	Bloemeke, J., et al. (författare) Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon 2020 Ingår i: European Journal of Pediatric Surgery. - : Georg Thieme Verlag KG. - 0939-7248 .- 1439-359X. ; 30:03, s. 232-238 Tidskriftsartikel (refereegranskat)abstract 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.
4.	Bräutigam, Matilda, 1975, et al. (författare) Linguistic and content validity of the Swedish version of the PedsQL (TM) gastrointestinal symptoms scales and symptoms module for paediatric patients 2021 Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 110:11, s. 3124-3130 Tidskriftsartikel (refereegranskat)abstract Aim To describe the process of linguistic and content validity of the Swedish version of the PedsQL (TM) Gastrointestinal Symptoms Scales and Symptoms Module, measuring health-related quality of life (HRQOL) in children with gastrointestinal (GI) disorders. Methods The establishment of linguistic and content validity was carried out in compliance with international standards on patient-reported outcome measurements. The process included forward translation, expert review and reconciliation, backward translation, backward translation review and interviews with 15 children aged 5-18 years with GI tract symptoms and 20 parents of children with GI tract symptoms aged 2-18 years. Results The Swedish version of the PedsQL (TM) Gastrointestinal Symptoms Scales and Symptoms Module (child report 5-18 years, parent report for children 2-18 years) was achieved without major difficulties. Eight issues needed discussion after forward translation, and there was one change after backward translation and three revisions following patient and parent testing. Conclusion A conceptually equivalent Swedish language version of PedsQL (TM) Gastrointestinal Symptoms Scale and Symptoms Module for children aged 2-18 years old was developed. This enables improved HRQOL evaluations in children with GI disorders in Sweden. Future research using a larger sample is recommended to evaluate validity and reliability of the Swedish language version of the module.
5.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study 2020 Ingår i: European Journal of Pediatric Surgery. - : Georg Thieme Verlag KG. - 0939-7248 .- 1439-359X. ; 30:1, s. 96-103 Tidskriftsartikel (refereegranskat)abstract 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.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Clinical predictors and prevalence of receiving special preschool/school support in children with repaired esophageal atresia 2018 Ingår i: Journal of Pediatric Surgery. - : Elsevier BV. - 0022-3468. ; 53:10, s. 1970-1975 Tidskriftsartikel (refereegranskat)abstract Background/purpose: In a sparsely investigated field, we aimed to evaluate the use of special preschool/school support among children with repaired esophageal atresia (EA) and/or tracheoesophageal fistula (TEF), the predicting clinical factors for this support, and level of school absence. Methods: Data on 119 EA/TEF children 2-17 years old were collected through medical records and questionnaires (response rate 95%). Logistical regression analysis identified clinical predictors of special preschool/school support in the population without genetic disorders (n = 105). Nominal hypothesis testing was performed using Fisher's exact test (p < 0.05). Results: Of the 119 children, 35.3% received special preschool/school support; 26.8% educational support, 21.8% support with nutritional intake issues and 13.4% received both types of support. Educational support was independently predicted by birthweight < 2500 g (p = 0.026) and associated anomalies (p = 0.049), nutritional intake support by gastrostomy insertion (p = 0.0028), and both types of supports by major revisional surgery (p = 0.0081). School absence >= 1 month/year, present in 25.5% of the children, was more frequently reported in children receiving preschool/school support, in preschoolers and in those with persistent respiratory problems (p < 0.05). Conclusions: Special preschool/school support is provided for approximately one-third of EA/TEF children. In EA/TEF children without genetic disorders, use of this support is predicted by congenital and surgical factors, and related to frequent school absence. (C) 2017 Elsevier Inc. All rights reserved.
7.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Coping strategies used by children and adolescents born with esophageal atresia - a focus group study obtaining the child and parent perspective 2016 Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862. ; 42:5, s. 759-767 Tidskriftsartikel (refereegranskat)abstract BackgroundEsophageal atresia (EA) is a rare malformation, which requires surgical treatment. Survival rates today reach 95%, but EA remains a significant cause of chronic morbidity with increased risk of psychosocial problems and impaired health-related quality of life (HRQOL). No study of coping strategies of children with EA has been reported in the literature to date, but increased knowledge could lead to improved outcomes and better HRQOL. MethodsStandardized focus groups with children with EA and their parents were conducted to identify issues related to health care needs and HRQOL, with group members relating their coping experiences. Identified coping statements were content analysed using a card sorting procedure and descriptive statistics. ResultsThirty families (18 children 8-17years; 32 parents of children with EA 2-17years) participated in 10 focus groups. A total of 590 coping statements were recorded. Nine coping strategies were identified: problem solving (n=116), avoidance (n=95), recognizing responsibility (n=71), confronting (n=70), seeking social support (n=63), positive reappraisal (n=58), emotional expression (n=46), acceptance (n=40) and distancing (n=31). Nine situational contexts were identified: nutritional intake (n=227), communication of one's health condition (n=78), self-perception when experiencing troublesome symptoms (n=59), appearance of body or scar(s) (n=57), physical activities like sport and play (n=43), sleep (n=34), hospital care (n=33), stigmatization and social exclusion (n=30) and medication intake (n=29). ConclusionsFocus group methodology contributed to an increased understanding of disease-specific coping processes among children and adolescence with EA. Findings illustrate that they use several coping strategies, some of which they seem to adopt at early age and use in disease-related contexts of physical, social and emotional character. Such coping may influence health and HRQOL in children with EA. In view of the importance of establishing good coping strategies early in life, health care professionals should integrate coping aspects into care management. Future studies are warranted.
8.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Establishment of a condition-specific quality-of-life questionnaire for children born with esophageal atresia aged 2-7 across 14 countries 2023 Ingår i: Frontiers in Pediatrics. - 2296-2360. ; 11 Tidskriftsartikel (refereegranskat)abstract BackgroundEsophageal atresia (EA) is a rare congenital anomaly characterized by a discontinuity of the esophagus. Following surgical repair, survival rates have improved dramatically the past decenniums and today exceed 90%, but the children commonly present with esophageal and respiratory morbidity. In 2018, a condition-specific quality-of-life questionnaire for children with esophageal atresia (EA) aged 2-7 in Sweden-Germany was finalized (The EA-QOL questionnaire). The study aim was to describe the evaluation of the new translations across 12 new countries in Europe, Asia, Africa, Central-and North America.MethodsFollowing forward-backward translation into the new languages, the 17-item EA-QOL questionnaire was tested in cognitive debriefing interviews with parents of children with EA aged 2-7. Parents rated if each item was easy to understand (clarity) and sensitive to answer (interference with personal integrity). They could skip responding to a non-applicable/problematic item and give open comments. Predefined psychometric criteria were used; item clarity >= 80%/item sensitive to answer <= 20%/item feasibility <= 5% missing item responses. The decision to modify the translation was based on native expert, patient stakeholder, and instrument developer review, and the need for harmonization between translations.ResultsSimilar to findings in the Swedish-German cognitive debriefing, the cross-cultural analysis of input from 116 parents from 12 new countries (4-14 parents, median 9 parents/country) showed that all items in the EA-QOL questionnaire fulfilled the criteria for item clarity >= 80% and sensitive to answer (ranging from 1%-4.5%), although results varied between countries. Four items had missing responses between 5.2% and 13.4%, three within the same domain and were in line with parents' explanations. Poor translations and feasibility were improved.ConclusionsBased on parent input, the collaboration between native experts, patient stakeholders, and instrument developers, a linguistic version of the EA-QOL questionnaire for children aged 2-7 for use in and across 14 countries has been established. These efforts have set the conditions for a cross-cultural field test of the EA-QOL questionnaire and will open the doors for a new chapter in outcome research, registries, and clinical practice concerning children with EA. In the long-term, this will help increase knowledge of the disease's burden, promote patient-centeredness, exchange of information between nations, and strengthen evidence-based treatments for children born with EA.
9.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Health-related quality of life among children, adolescents, and adults with bladder exstrophy–epispadias complex: a systematic review of the literature and recommendations for future research 2019 Ingår i: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 28:6, s. 1389-1412 Tidskriftsartikel (refereegranskat)abstract Purpose: Bladder exstrophy–epispadias complex (BEEC) is a rare spectrum of genitourinary malformations. Children risk long-term urinary and genital dysfunctions. To achieve a comprehensive understanding, this study aimed to review the literature on generic and disease-specific health-related quality of life (HRQOL) in BEEC patients, and methodologies used. Methods: A literature search was conducted in Pubmed/CINAHL/Embase/PsycINFO/Cochrane, from inception to May 2018. A meta-analysis of HRQOL in BEEC patients compared to healthy references was performed. Results: Twenty-one articles (published 1994–2018), describing HRQOL of children and adolescents (n = 5) and adults only (n = 5), or integrated age populations (n = 11), were identified (median sample size 24, loss to follow-up 43%, response rate 84%). Overall HRQOL was reduced in BEEC patients compared to healthy references in 4/4 studies. Impaired physical or general health in BEEC patients has been described in 9 articles, diminished mental health in 11, restricted social health in 10, and sexual health/functioning or body perception impairments in 13 articles. Urinary incontinence was the most common factor related to worse HRQOL (12 studies). In six studies, HRQOL was better than healthy norms. In eligible studies (n = 5), the pooled estimate of the effect of BEEC indicated worse HRQOL for children and adults (0 > effect sizes < 0.5). Thirty-six HRQOL assessments were used, none developed and validated for BEEC. Conclusions: HRQOL in BEEC patients may be negatively impacted, particularly considering mental and social HRQOL. Sexual health/functioning or body perception impairments may be present in adolescents and adults. However, HRQOL is heterogeneously assessed and subsequent findings are differently reported. Additional research is warranted and can be improved. © 2019, Springer Nature Switzerland AG.
10.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research. 2015 Ingår i: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. - : Springer Science and Business Media LLC. - 1573-2649. ; 24:10, s. 2433-2445 Forskningsöversikt (refereegranskat)abstract Esophageal atresia (EA) is a rare congenital malformation requisite of surgical treatment. Survival rates have significantly increased in recent decades, but treated children are at risk of chronic morbidity. This study aims to review the literature on health-related quality of life (HRQOL) in patients with EA and describe the questionnaires used.
11.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients. 2016 Ingår i: Journal of pediatric surgery. - : Elsevier BV. - 1531-5037 .- 0022-3468. ; 51:4, s. 563-569 Tidskriftsartikel (refereegranskat)abstract The aims were to present the framework for the development a condition-specific health-related quality-of-life (HRQOL) questionnaire for children with esophageal atresia (EA) and to describe HRQOL experiences reported by children and by their parents.
12.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature. 2020 Ingår i: European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie. - : Georg Thieme Verlag KG. - 1439-359X. ; 30:3, s. 239-250 Forskningsöversikt (refereegranskat)abstract Patients born with esophageal atresia (EA) require advanced reconstructive surgery and risk long-term digestive and respiratory morbidity. We describe the state of current literature on these patients' health-related quality of life (HRQoL) and give recommendations for future research. A literature search was conducted in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsychINFO and included articles from 2015 to December 28, 2019. Criteria for selecting articles were predefined. Seventeen articles describing HRQoL among children, adolescents, and adults were found, two of which focused on adults only. Six studies included international samples and among 15 quantitative studies sample sizes varied from 17 to 928 (median: 46). Seven different HRQoL questionnaires were used for children, three of which were specially adjusted for EA, of which one was reported validity and reliability. Four questionnaires were used for adults, one of which was generic and three symptom-specific, referring to swallowing or to the gastrointestinal tract. Hence, HRQoL outcomes were described differently. However, several studies of pediatric patients with EA revealed associations between lower HRQoL and particular congenital and surgical characteristics, which reflected disease severity. In two out of three articles, pediatric patients with EA had lower overall scores than healthy children. Digestive symptoms consistently lowered HRQoL scores in children and adults. Prior to 2015, only 12 studies were published, which illustrate a recent expansion in this field. Various HRQoL aspects and heterogeneous samples are examined, and outcomes differently reported. Current literature suggests that clinical subgroups of children with EA present with impaired HRQoL and that digestive symptomology influence HRQoL negatively. Conclusions of studies focusing on adults with EA are difficult to draw. Additional research is required.
13.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Parents`experiences with neonatal home care following initial care in the neonatal intensive care unit: a phenomenological hermeneutical interview study 2014 Ingår i: Jornal of Advanced Nursing. - : Wiley. - 1365-2648 .- 0309-2402. ; 70:3, s. 575-586 Tidskriftsartikel (refereegranskat)abstract Aim. A descriptive study of parents’ experiences with neonatal home care following initial care in the neonatal intensive care unit. Background. As survival rates improve among premature and critically ill infants with an increased risk of morbidity, parents’ responsibilities for neonatal care grow in scope and degree under the banner of family-centred care. Concurrent with medical advances, new questions arise about the role of parents and the experience of being provided neonatal care at home. Design. An interview study with a phenomenological hermeneutic approach. Methods. Parents from a Swedish neonatal ( n = 22) home care setting were extensively interviewed within one year of discharge. Data were collected during 2011 – 2012. Findings. The main theme of the findings is that parents experience neonatal home care as an inner emotional journey, from having a child to being a parent. This finding derives from three themes: the parents’ experience of leaving the hospital milieu in favour of establishing independent parenthood, maturing as a parent and processing experiences during the period of neonatal intensive care. Conclusions. This study suggests that neonatal home care is experienced as a care structure adjusted to incorporate parents’ needs following discharge from a neonatal intensive care unit. Neonatal home care appears to bridge the gap between hospital and home, supporting the family’s adaptation to life in the home setting. Parents become empowered to be primary caregivers, having nurse consultants serving the needs of the whole family. Neonatal home care may therefore be understood as the implementation of family-centred care during the transition from NICU to home.
14.	Dellenmark-Blom, Michaela, 1983 (författare) Patient-reported outcomes in children and adolescents born with esophageal atresia 2017 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Background: Survival rates in children with esophageal atresia (EA) have reached 90-95%, but they are at risk of chronic morbidity, mainly related to esophageal and respiratory dysfunction. Knowledge of condition-specific health-related quality of life (HRQOL) and coping is needed in order to properly understand the impact of the disease and treatment in the child’s daily life. Aim: The aim was to advance knowledge of condition-specific aspects of HRQOL and coping among children and adolescents with EA, including to develop and establish the field test version of a condition-specific HRQOL questionnaire for children with EA. Methods: The study design followed international guidelines for the development of a patient-reported outcome measure. A systematic literature review of HRQOL in patients with EA was conducted in Pubmed, Cinahl, and PsycINFO, from inception to January 2015. Ten standardized focus groups with 30 Swedish families of EA children 2–17 years old were held to capture the child and parent perspectives of HRQOL and coping. The reported experiences were content analyzed. The HRQOL experiences were used for item generation of pilot questionnaires which, after translation from Swedish to German, were offered to a cross-cultural sample of 89 families of EA children 2–17 years old. Predefined psychometric criteria were used in the pilot test in order to eliminate or revise poor items for the field test questionnaire. The shortened questionnaires were analyzed for internal reliability and convergent and known-groups validity. Results: Twelve studies (published 1995-2014) were included in the literature review. Five articles (published 2003–2014) described HRQOL among EA children. The studies had employed four different HRQOL questionnaires, and HRQOL results were heterogeneously reported. A standardized condition-specific HRQOL questionnaire for children with EA was needed. Thirty families of children with EA (18 children 8–17 years old, 32 parents of children 2–17 years old) participated in the focus groups (response rate 100%) and produced 1371 HRQOL statements, which formed the basis of two age-specific versions of pilot questionnaires. The 30-item pilot questionnaire for children aged 2–7 years was completed by 34 families (parent report), and the 50-item pilot questionnaire for children aged 8–17 years was completed by 52 families (51 child-report, 52 parent-report) from Sweden and Germany, with a response rate of 96% in the total sample. After omitting poorly performing items, the field test questionnaire for children aged 2–7 years (parent report) consisted of 18 items and three domains (Eating, Physical health & treatment, and Social isolation & stress), and the field test questionnaire for children 8–17 years old consisted of 26 items with four domains (Eating, Social relationships, Body perception, and Health & well-being). The initial reliability and validity of the shortened questionnaires were adequate. The focus groups also generated 590 coping statements, which revealed nine different coping strategies (Problem solving, Avoidance, Confronting, Recognizing responsibility, Seeking social support, Positive reappraisal, Emotional expression, Acceptance, Distancing) that were used in nine situational contexts. The majority of coping experiences (68.6%) were described by children with severe EA and by their parents. Conclusions: Following the need for advancement in the field, the perspectives of children with EA and their parents have been incorporated into the field test version of the first condition-specific HRQOL questionnaire for EA children.The foremost HRQOL issues are related to eating, physical health and social dimensions; in children 8–17 years old, body perception issues are also prominent. Condition-specific coping strategies seem to be adopted at an early age and may affect HRQOL. The findings shed light on issues of relevance for follow-up routine care, and can improve the evaluation of pediatric surgical care and treatment. Future research is warranted
15.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study 2022 Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 17:1 Tidskriftsartikel (refereegranskat)abstract Background In 10-15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. Methods Postoperative morbidity, age-specific generic HRQOL (PedsQL((TM)) 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group's HRQOL scores were analyzed using Mann-Whitney U-test and Spearman's rho. Clinical data was extracted from the medical records. Significance level was p < 0.05. Results Thirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2-7 years; n = 22 children aged 8-18 years). Compared to children with PA(42 children aged 2-7 years; 64 children aged 8-18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2-7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in >= 50%. In children aged 8-18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0-27.3%. Except for chest tightness (2-7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p > 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2-7 years), and antireflux treatment (8-18 years), p < 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2-7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8-18 years), p < 0.05. Conclusions Although children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.
16.	Dellenmark-Blom, Michaela, 1983, et al. (författare) Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study 2023 Ingår i: Orphanet Journal of Rare Diseases. - : BioMed Central (BMC). - 1750-1172. ; 18:1 Tidskriftsartikel (refereegranskat)abstract BackgroundChildren with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children's development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden in comparison with children with EA who had primary anastomosis.MethodChildren with LGEA aged 3-17 were recruited nationwide in Sweden. One parent completed a survey on their child's school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared between 26 children with LGEA to that from 95 children with EA who had PA, a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal & GE; 90 percentile. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Significance level was p < 0.05.ResultsFormal school-based support was reported in 17 (65.4%) children with LGEA and concerned support with nutritional intake (60%), education (50%) and medical/special health needs (35%). The prevalence of school-based support was significantly higher compared to children with PA overall (36.8%, p = 0.013) and regarding nutritional intake support (20%, p < 0.001). In children with LGEA, school-based support was related to low birth weight (p = 0.036), young child age (p = 0.014), height & LE; -2SD for age/sex (p = 0.024) and an increased number of aerodigestive symptoms (p < 0.05). All children with LGEA who had abnormal mental health scores had school-based support, except for one child. Nine children with LGEA (36%) had school absence & GE; 1times/month the past year, more frequently because of colds/airway infections (p = 0.045) and GI-specific problems compared to PA (p = 0.003). School functioning scores were not significantly different from children with PA (p = 0.34) but correlated negatively with school-based support (< 0.001) and school absence (p = 0.002). One parent out of 26 reported their child's school satisfaction as "not good".ConclusionsChildren with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Future research focusing on academic achievement in children with EA is needed.
17.	Dellenmark-Blom, Michaela, 1983, et al. (författare) The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany. 2018 Ingår i: Journal of pediatric gastroenterology and nutrition. - 1536-4801. ; 67:4, s. 469-477 Tidskriftsartikel (refereegranskat)abstract Esophageal atresia (EA) is a rare malformation characterized of discontinuity of the esophagus, concurrent with or without a tracheoesophageal fistula (TEF). We report the feasibility validity and reliability of a condition-specific quality-of-life (QOL) tool for EA/TEF children, the age-adapted EA-QOL-questionnaires, when used in Sweden and Germany.A total of 124 families of children with EA/TEF participated in the study; 53 parents completed the EA-QOL-questionnaire for children aged 2 to 7 years; 62 children/71 parents the EA-QOL-questionnaire for children 8 to 17 years. Feasibility was determined from the percentage of missing item responses. Based on clinical data and previously validated generic QOL-instruments (PedsQL 4.0, DISABKIDS-12), the final EA-QOL scores were evaluated against hypotheses of validity (known-groups/concurrent/convergent) and reliability (internal consistency/retest reliability of scores for 3 weeks). Significant level was P < 0.05.In the questionnaire for EA/TEF children aged 2 to 7 years, 16/18 items were completed with missing values <6% (range 0%-7.5%), and in the questionnaire for 8 to 17-year-olds, 24/24 child-reported items (range 0%-4.8%) and 21/24 parent-reported items (range 0%-7.0%). In both age-specific EA-QOL-questionnaires, desirable standards for known-groups and concurrent validity were fulfilled; digestive symptoms and feeding difficulties negatively impacted EA-QOL-Total-scores (P < 0.001), and as hypothesized, in 2 to 7-year-olds, respiratory symptoms decreased EA-QOL-Total-scores (P=0.002). Correlations between the EA-QOL and generic QOL questionnaires supported convergent validity. Internal consistency reliability was satisfactory. The level of agreements of EA-QOL-scores between the field- and retest study were good to excellent.The overall psychometric performance of the EA-QOL-questionnaires for EA/TEF children is satisfactory and can enhance outcome evaluations in future research and clinical practice.
18.	Dellenmark-Blom, Michaela, 1983, et al. (författare) The prevalence and role of coping strategies in the nutritional intake of children born with esophageal atresia: a condition-specific approach 2019 Ingår i: Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus. - : Oxford University Press (OUP). - 1442-2050. ; 32:7 Tidskriftsartikel (refereegranskat)abstract This study describes results of a condition-specific approach to the assessment of coping strategies in nutritional intake situations used by children with esophageal atresia. One hundred three families of children 2-17 years old with esophageal atresia participated (94% response rate). Following standardized focus groups with 30 families, nine coping items were developed, reflecting nine different coping strategies in nutritional intake situations. The coping items were pilot tested by 73 new families and evaluated for feasibility, validity, and reliability. The families also completed a validated condition-specific quality-of-life questionnaire for children with esophageal atresia, which included the scale Eating-Quality-of-life. Data were analyzed using descriptives, between-group analysis, and Spearman's rho (P<0.05). Altogether, the coping items were feasible, valid, and reliable. Items reflecting problem-focused strategies revealed that 89% of 2-17 years old 'recognized their responsibility' and managed nutritional intake problems on their own, 79% 'tried to solve their feeding problems' testing different solutions, 79% took a 'confronting approach' to do what peers did in eating situations, and 54% 'sought other people's support'. Items reflecting emotion-focused strategies showed that 86% of the children 'accepted' their feeding difficulties, 68% 'reappraised feeding difficulties into positive outcomes' such as to eat only when food tasted good. Moreover, 63% of the children 'avoided' nutritional intake situations, 29% 'expressed worry or fear' when faced with these situations, while 25% 'distanced' themselves from eating problems by hiding or throwing away food. The children's use of coping strategies were mostly related to the existence of digestive symptoms (P<0.05). Positive and negative coping strategies were identified. Of particular note was a correlation cluster of the so-called disengagement strategies 'avoidance', 'expression of emotional concerns' and 'distancing'. These strategies were negatively correlated with Eating-Quality-of-Life. Conversely, taking a 'confronting approach' correlated positively with Eating-Quality-of-life (P<0.05). Hence, most children with esophageal atresia employ various coping strategies in nutritional intake situations. A good Eating-Quality-of-life may be positively affected by treating digestive morbidity and encouraging children to take an active approach to their eating problems rather than using disengagement coping. © The Author(s) 2019. Published by Oxford University Press on behalf of International Society for Diseases of the Esophagus.
19.	Dingemann, Jens, et al. (författare) Health-Related Quality of Life in Pediatric Surgical Patients and their Caretakers. 2020 Ingår i: European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie. - : Georg Thieme Verlag KG. - 1439-359X. ; 30:3, s. 223-224 Tidskriftsartikel (refereegranskat)
20.	Heringhaus, Alina, et al. (författare) Becoming a parent to a child with birth asphyxia- from a traumatic delivery to living with the experience at home 2013 Ingår i: Internationell Journal of Qualitative Studies in Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 8, s. 1-13 Tidskriftsartikel (refereegranskat)abstract The aim of this study is to describe the experiences of becoming a parent to a child with birth asphyxia treated with hypothermia in the neonatal intensive care unit (NICU). In line with the medical advances, the survival of critically ill infants with increased risk of morbidity is increasing. Children who survive birth asphyxia are at a higher risk of functional impairments, cerebral palsy (CP), or impaired vision and hearing. Since 2006, hypothermia treatment following birth asphyxia is used in many of the Swedish neonatal units to reduce the risk of brain injury. To date, research on the experience of parenthood of the child with birth asphyxia is sparse. To improve today's neonatal care delivery, health-care providers need to better understand the experiences of becoming a parent to a child with birth asphyxia. A total of 26 parents of 16 children with birth asphyxia treated with hypothermia in a Swedish NICU were interviewed. The transcribed interview texts were analysed according to a qualitative latent content analysis. We found that the experience of becoming a parent to a child with birth asphyxia treated with hypothermia at the NICU was a strenuous journey of overriding an emotional rollercoaster, that is, from being thrown into a chaotic situation which started with a traumatic delivery to later processing the difficult situation of believing the child might not survive or was to be seriously affected by the asphyxia. The prolonged parent-infant separation due to the hypothermia treatment and parents' fear of touching the infant because of the high-tech equipment seemed to hamper the parent-infant bonding. The adaption of the everyday life at home seemed to be facilitated by the follow-up information of the doctor after discharge. The results of this study underline the importance of family-centered support during and also after the NICU discharge.
21.	Holmdahl, Gundela, 1956, et al. (författare) Health-Related Quality of Life in Patients with the Bladder Exstrophy-Epispadias Complex and Relationship to Incontinence and Sexual Factors: A Review of the Recent Literature. 2020 Ingår i: European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie. - : Georg Thieme Verlag KG. - 1439-359X. ; 30:3, s. 251-260 Forskningsöversikt (refereegranskat)abstract The bladder exstrophy-epispadia complex (BEEC) includes malformations with midline closing defects of the lower abdomen and external genitalia. Long-term consequences with urinary incontinence and sexual dysfunction, in spite of multiple surgical interventions, are common and expected to affect the patient's health-related quality of life (HRQOL). The extent and the predictive factors are, however, not known. New patient-reported outcome research is emerging, but valid and reliable condition-specific HRQOL are still missing. The aim of this review is to summarize and discuss the latest published reports (2015-2019) on HRQOL in patients with the BEEC and its relationship to incontinence and sexual factors.
22.	Jönsson, Linus, 1973, et al. (författare) Macrophage Phenotype Is Associated With the Regenerative Response in Experimental Replacement of the Porcine Esophagus. 2016 Ingår i: Artificial organs. - : Wiley. - 1525-1594 .- 0160-564X. ; 40:10, s. 950-958 Tidskriftsartikel (refereegranskat)abstract A porcine model for bridging circumferential defects in the intrathoracic esophagus has been developed in order to improve the treatment of children born with long-gap esophageal atresia. The aim of this study was to identify factors beneficial for tissue regeneration in the bridging area in this model and to describe the histological progression 20 days after replacement with a silicone-stented Biodesign mesh. Resection of 3cm of intrathoracic esophagus and replacement with a bridging graft was performed in six newly weaned piglets. They were fed through a gastrostomy for 10 days, and then had probe formula orally for another 10 days prior to sacrifice. Two out of six piglets had stent loss prior to sacrifice. In the four piglets with the stent in place, a tissue tube, with visible muscle in the wall, was seen at sacrifice. Histology showed that the wall of the healing area was well organized with layers of inflammatory cells, in-growing vessels, and smooth muscle cells. CD163+ macrophages was seen toward the esophageal lumen. In the animals where the stent was lost, the bridging area was narrow, and histology showed a less organized structure in the bridging area without the presence of CD163+ macrophages. This study indicates that regenerative healing was seen in the porcine esophagus 20 days after replacement of a part of the intrathoracic esophagus with a silicone-stented Biodesign mesh, if the bridging graft is retained. If the graft is lost, the inflammatory pattern changes with invasion of proinflammatory, M1 macrophages in the entire wall, which seems to redirect the healing process toward scar formation.
23.	Kassa, Ann-Marie, et al. (författare) Children and adolescents with VACTERL association : health-related quality of life and psychological well-being in children and adolescents and their parents 2020 Ingår i: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 29:4, s. 913-924 Tidskriftsartikel (refereegranskat)abstract PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents.METHODS: Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples.RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples.CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.
24.	Kassa, Ann-Marie, 1955-, et al. (författare) Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study 2022 Ingår i: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 17:5 Tidskriftsartikel (refereegranskat)abstract Current knowledge of transitional care from the perspective of individuals with congenital malformations is scarce. Their viewpoints are required for the development of follow-up programs and transitional care corresponding to patients' needs. The study aimed to describe expectations, concerns, and experiences in conjunction with transfer to adult health care among adolescents, young adults, and adults with VACTERL association, (i.e. vertebral defects, anorectal malformations (ARM), cardiac defects (CHD), esophageal atresia (EA), renal, and limb abnormalities). Semi-structured telephone interviews were performed and analyzed with qualitative content analysis. Of 47 invited individuals, 22 participated (12 males and 10 females). An overarching theme emerged: Leaving the safe nest of pediatric health care for an unfamiliar and uncertain follow up yet growing in responsibility and appreciating the adult health care. The participants described expectations of qualified adult health care but also concerns about the process and transfer to an unfamiliar setting. Individuals who were transferred described implemented or absence of preparations. Positive and negative experiences of adult health care were recounted including being treated as adults. The informants described increasing involvement in health care but were still supported by their parents. Ongoing follow up of health conditions was recounted but also uncertainty around the continuation, missing follow up and limited knowledge of how to contact health care. The participants recommended information ahead of transfer and expressed wishes for continued health care with regular follow up and accessibility to a contact person. Based on the participants' perspective, a transitional plan is required including early information about transfer and follow up to prepare the adolescents and reduce uncertainty concerning future health care. Meetings with the pediatric and adult team together with the patient and the parents are essential before transfer. Follow up should be centralized to centers with multi-professional teams well-experienced with the condition. Further studies are warranted to evaluate the transition process for adolescents and young adults with complex congenital health conditions.
25.	Krishnan, U., et al. (författare) The International Network on Oesophageal Atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula 2023 Ingår i: Nature Reviews Gastroenterology & Hepatology. - 1759-5045. ; 20, s. 735-755 Tidskriftsartikel (refereegranskat)abstract Oesophageal atresia-tracheoesophageal fistula (EA-TEF) is a common congenital digestive disease. Patients with EA-TEF face gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life issues in childhood, adolescence and adulthood. Although consensus guidelines exist for the management of gastrointestinal, nutritional, surgical and respiratory problems in childhood, a systematic approach to the care of these patients in adolescence, during transition to adulthood and in adulthood is currently lacking. The Transition Working Group of the International Network on Oesophageal Atresia (INoEA) was charged with the task of developing uniform evidence-based guidelines for the management of complications through the transition from adolescence into adulthood. Forty-two questions addressing the diagnosis, treatment and prognosis of gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life complications that patients with EA-TEF face during adolescence and after the transition to adulthood were formulated. A systematic literature search was performed based on which recommendations were made. All recommendations were discussed and finalized during consensus meetings, and the group members voted on each recommendation. Expert opinion was used when no randomized controlled trials were available to support the recommendation. The list of the 42 statements, all based on expert opinion, was voted on and agreed upon. Currently, systematic care for adults and adolescents with oesophageal atresia-tracheoesophageal fistula (EA-TEF) as they transition into adulthood is lacking. A multidisciplinary group of experts structured this Consensus Statement offering guidelines for the care of adolescents and adults with EA-TEF during transition.
26.	Li, Siqi, et al. (författare) The Chinese Mandarin Version of the Esophageal-Atresia-Quality-of-Life Questionnaires for Children and Adolescents: Evaluation of Linguistic and Content Validity. 2022 Ingår i: International journal of environmental research and public health. - : MDPI AG. - 1660-4601. ; 19:22 Tidskriftsartikel (refereegranskat)abstract After repair of esophageal atresia (EA), children risk digestive and respiratory morbidity, but knowledge of their health-related quality of life (HRQOL) in China is lacking. The EA-QOL questionnaires were developed in Sweden and Germany to evaluate condition-specific HRQOL in children with EA aged 2-7 and 8-17. This study aimed to evaluate the linguistic and content validity of the Chinese Mandarin version of the EA-QOL questionnaires.The procedure was conducted in compliance with international standards, including a forward-backward translation procedure, expert reviews, and cognitive debriefing interviews with 14 Chinese families of children with EA (parents of 8 children aged 2-7/6 children aged 8-17 and their parents).Following forward-backward translation, minor issues were identified and solved. In interviews, all participants rated all EA-QOL items easy to understand, none expressed negative emotions about them and most described them comprehensive and relevant for EA. Leading from cognitive debriefing, three EA-QOL items in the questionnaire version for children aged 2-7 and three EA-QOL items in the questionnaire version for children aged 8-17 were modified in the Chinese language to improve cultural appropriateness and/or clarity.The Chinese Mandarin version of the EA-QOL questionnaires achieved satisfactory linguistic and content validity. This can help increase focus of HRQOL in research and clinical practice of children with EA in China.
27.	Rozensztrauch, A., et al. (författare) Reliability and Validity of the Polish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia 2022 Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601. ; 19:13 Tidskriftsartikel (refereegranskat)abstract Aim: This study reports the reliability and validity of the Polish version of the Esophageal Atresia Quality of Life (EA-QOL) questionnaires, which were originally developed in Sweden and Germany. Methods: A total of 50 families of children (23 aged 2 to 7, and 27 aged 8 to 17) with EA/TEF (esophageal atresia/tracheoesophageal fistula) participated in the study. The development and validation of the Polish version of the EA-QOL involved forward-backward translation of the survey items following the guidelines for cross-cultural translation, cognitive debriefing and evaluation of psychometric properties, including assessment of internal and retest reliability, linguistic validity, content validity, known-group validity and convergent validity. The medical records of patients and standardized questionnaires were used to obtain clinical data. The level of significance was p < 0.05. Results: The Polish versions of the EA-QOL questionnaires demonstrated strong linguistic and content validity, are slightly discriminative for esophageal and respiratory problems, but do not show convergent validity with the PedsQL 4.0 generic core scales. In terms of reliability, the internal consistency of the subscale and total scale of Polish versions as measured by Cronbach's alpha is good, and retest reliability is excellent. Conclusions: The Polish versions of the EA-QOL questionnaires meet most psychometric criteria that confirm the EA-QOL questionnaires' reliability and validity. This study enables application of these questionnaires in future research among children with EA in Poland and participation in international multicenter studies focusing on advancing knowledge of condition-specific QOL in this population. Future cross-cultural research using larger sample sizes is still needed to better address the relationship between condition-specific and generic QOL, as well as the discriminative ability of the EA-QOL questionnaires.
28.	Sillén, Ulla, 1946, et al. (författare) Development and Validation of Symptom Score for Total Bladder-Bowel Dysfunction: Subscales for Overactive Bladder and Dysfunctional Voiding. 2020 Ingår i: The Journal of urology. - 1527-3792. ; 204:6, s. 1333-1340 Tidskriftsartikel (refereegranskat)abstract Bladder-bowel questionnaires are an important tool in diagnosing nonneurogenic bladder-bowel dysfunction in children. We report the validity and reliability of a bladder-bowel questionnaire that has been in clinical use at our institution for decades.The bladder-bowel questionnaire contains 13 questions, with answers ranging from never (score of 0) to daily (3). The questionnaire was answered by 139 healthy controls and 134 children 3 to 16 years old diagnosed with bladder-bowel dysfunction by a pediatric urologist/urotherapist. A subdiagnosis of overactive bladder or dysfunctional voiding was made in each patient. Bladder-bowel questionnaire scales were developed and evaluated against hypotheses of validity (known groups/convergent/discriminating) and reliability (internal consistency/retest reliability), sensitivity and specificity. Responsiveness was tested in 80 patients who answered the bladder-bowel questionnaire after treatment.A total bladder-bowel dysfunction score scale demonstrated the ability to discriminate between patients with bladder-bowel dysfunction and healthy subjects. It resulted in a ROC curve with AUC of 0.96. The maximized sensitivity was 94% and specificity was 89% for a cutoff score of 7. Two subscales were identified referring to 6 filling phase items and 3 voiding phase items. When tested in patients with overactive bladder and dysfunctional voiding, respectively, multivariable scales performed sufficiently to discriminate between those with and without overactive bladder, and those with and without dysfunctional voiding. All of these scales fulfilled the evaluated requirements for validity and reliability. At 1 year after treatment all scale scores corresponded to patient improvement (p <0.0001), suggesting the bladder-bowel questionnaire can detect clinical change over time.The bladder-bowel questionnaire is valid and reliable for diagnosing bladder-bowel dysfunction in pediatric patients, and overactive bladder and dysfunctional voiding in those with bladder-bowel dysfunction.
29.	Soto Jansson, Josefin, et al. (författare) Diagnosis, epilepsy treatment and supports for neurodevelopment in children with Dravet Syndrome: Caregiver reported experiences and needs 2024 Ingår i: Epilepsy and Behavior. - 1525-5050 .- 1525-5069. ; 151 Tidskriftsartikel (refereegranskat)abstract Background: Dravet syndrome is a rare infantile onset epilepsy syndrome encompassing treatment resistant epilepsy and neurodevelopmental difficulties. There is limited data regarding caregiver experiences of diagnosis, treatment and supports for the associated neurodevelopmental problems. Method: Semi-structured interviews were conducted with caregivers of 36/48 children (75% of total population in Sweden) with Dravet syndrome. Data was analysed using thematic analysis. Results: Regarding the diagnostic experience, themes were: Delays in diagnostic process, genetic testing not optimal, communication of Dravet syndrome diagnosis and support and information soon after diagnosis. Caregivers felt that delays in diagnosis and testing could have been avoided whilst experiences of communication of diagnosis and support after diagnosis varied. In terms of treatment for seizures, the themes were: Satisfied with treatment, emergency treatment, treatment with antiseizure medications, strategies to control seizures via temperature regulation/avoidance of infections and use of equipment and aids. Caregivers were in the main accepting that seizures in Dravet syndrome are very difficult to treat and that seizure freedom is often an unachievable goal. Many felt frustrated that they were expected to take responsibility with respect to choice of medication. They often employed strategies (e.g., avoidance of physical activity) to reduce seizures or their impact. In terms of supports for neurodevelopmental problems, the themes were: Struggled to access support, lack of integrated healthcare and satisfaction with school. Many caregivers felt that accessing necessary supports for their children and developmental and behavioural needs was a struggle and that the provision of support often lacked integration e.g., lack of collaboration between child's disability service and school. Caregivers also expressed a desire that there would be better knowledge of Dravet syndrome in emergency departments and schools, that care would be better integrated and that there would be more supports for assessment and interventions regarding the associated neurodevelopmental problems. Conclusion: The responses of caregivers of children with Dravet syndrome highlight the need for supports from diagnosis for both epilepsy and neurodevelopmental problems. Good examples of provision were identified but parents often felt they lacked support and support often came from providers who lacked knowledge of the syndrome. Collaboration between medical, disability and school services was often lacking.
30.	Soyer, T., et al. (författare) Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia 2021 Ingår i: Turkish Journal of Gastroenterology. - : AVES Publishing Co.. ; 32:8, s. 640-650 Tidskriftsartikel (refereegranskat)abstract Background: This study reports the feasibility, validity, and reliability of the Turkish versions of the Esophageal-Atresia-Quality-of-Life (EA-QOL) questionnaires, which were originally developed in Sweden and Germany. Methods: After translation from Swedish to Turkish and cognitive debriefings, 51 families of children aged 2-7 years (parent-reported, 17 items) and 54 families of children 8-17 years (child-reported and parent-reported, 24 items) responded to the EA-QOL questionnaires and a validated generic HRQOL instrument (PedsQL4.0). The medical records of the patients and the questionnaires were used to obtain clinical data. The Turkish version of the EA-QOL questionnaires were evaluated for feasibility (<5% missing item responses), reliability (internal consistency/retest reliability for 3 weeks), and validity (known groups/concurrent/convergent). The level of significance was P <.05. Results: The feasibility of the Turkish version of the EA-QOL questionnaires was good. The internal consistency of all scales was satisfactory, as were the levels of agreement of EA-QOL scores between the field study and the retest study. Known-group validity and concurrent validity were achieved, since the EA-QOL questionnaires showed that esophageal symptoms and feeding difficulties were negatively associated with EA-QOL total scores, both in the age-specific versions (child-reported and parent- reported), and with respect to respiratory symptoms in the version for EA children 2-7 years (parent-reported). A higher number of respiratory symptoms decreased the EA-QOL total scores in both age groups (parent-reported, P < .05). Correlations between the EA-QOL total scores and PedsQL-4.0 total scores supported convergent validity. Conclusion: The Turkish version of the EA-QOL questionnaires is feasible, valid, and reliable to assess condition-specific HRQOL in EA children.
31.	Spivack, Olivia K. C., et al. (författare) A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field 2024 Ingår i: EUROPEAN JOURNAL OF PEDIATRIC SURGERY. - 0939-7248 .- 1439-359X. ; 34:2, s. 143-161 Forskningsöversikt (refereegranskat)abstract Introduction Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research. Materials and Methods A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described. Results Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study. Conclusions This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.
32.	Ten Kate, Chantal A, et al. (författare) Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia. 2022 Ingår i: Children (Basel, Switzerland). - : MDPI AG. - 2227-9067. ; 9:10 Tidskriftsartikel (refereegranskat)abstract A condition-specific instrument (EA-QOL©) to assess quality of life of children born with esophageal atresia (EA) was developed in Sweden and Germany. Before implementing this in the Netherlands, we evaluated its psychometric performance in Dutch children. After Swedish-Dutch translation, cognitive debriefing was conducted with a subset of EA patients and their parents. Next, feasibility, reliability, and validity were evaluated in a nationwide field test. Cognitive debriefing confirmed the predefined concepts, although some questions were not generally applicable. Feasibility was poor to moderate. In 2-to-7-year-old children, 8/17 items had >5% missing values. In 8-to-17-year-old children, this concerned 3/24 items of the proxy-report and 5/14 items of the self-report. The internal reliability was good. The retest reliability showed good correlation. The comparison reliability between self-reports and proxy-reports was strong. The construct validity was discriminative. The convergent validity was strong for the 2-to-7-year-old proxy-report, and weak to moderate for the 8-to-17-year-old proxy-report and self-report. In conclusion, the Dutch-translated EA-QOL questionnaires showed good reliability and validity. Feasibility was likely affected by items not deemed applicable to an individual child's situation. Computer adaptive testing could be a potential solution to customizing the questionnaire to the individual patient. Furthermore, cross-cultural validation studies and implementation-evaluation studies in different countries are needed.
33.	Wigert, Helena, 1960, et al. (författare) Parents´ experiences of communication with neonatal intensive-care unit staff: an interview study. 2014 Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 14:1 Tidskriftsartikel (refereegranskat)abstract Background An infant’s admission to a neonatal intensive-care unit (NICU) inevitably causes the parents emotional stress. Communication between parents and NICU staff is an essential part of the support offered to the parents and can reduce their emotional stress. The aim of this study was to describe parents’ experiences of communication with NICU staff. Methods A hermeneutic lifeworld interview study was performed with 18 families whose children were treated in the level III NICU at a university hospital in Sweden. The interviews were analysed to gain an interpretation of the phenomenon of how parents in the NICU experienced their communication with the staff, in order to find new ways to understand their experience. Results Parents’ experience of communication with the staff during their infant’s stay at the NICU can be described by the main theme ‘being given attention or ignored in their emotional situation’. The main theme derives from three themes; (1) meeting a fellow human being, (2) being included or excluded as a parent and (3) bearing unwanted responsibility. Conclusions This study shows that parents experienced communication with the NICU staff as essential to their management of their situation. Attentive communication gives the parents relief in their trying circumstances. In contrast, lack of communication contributes to feelings of loneliness, abandonment and unwanted responsibility, which adds to the burden of an already difficult situation. The level of communication in meetings with staff can have a decisive influence on parents’ experiences of the NICU. The staff should thus be reminded of their unique position to help parents handle their emotional difficulties. The organization should facilitate opportunities for good communication between parents and staff through training, staffing and the physical health care environment.
34.	Wigert, Helena, 1960, et al. (författare) Strengths and weaknesses of parent – staff communication in the NICU: a survey assessment 2013 Ingår i: BMC pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 13:71 Tidskriftsartikel (refereegranskat)abstract Parents of infants hospitalized in the neonatal intensive care unit (NICU) find themselves in a situation of emotional strain. Communication in the NICU presents special challenges due to parental stress and the complexity of the highly technologized environment. Parents' need for communication may not always be met by the NICU staff. This study aimed to describe strengths and weaknesses of parent-nurse and parent-doctor communication in a large level III NICU in Sweden in order to improve our understanding of parents' communication needs.
35.	Witt, Stefanie, et al. (författare) Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study. 2019 Ingår i: Child: care, health and development. - : Wiley. - 1365-2214 .- 0305-1862. ; 45:1, s. 79-88 Tidskriftsartikel (refereegranskat)abstract 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.Eighteen standardized focus groups (FGs) with 51 families of EA children aged 2-17years 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.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%).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.
36.	Witt, Stefanie, et al. (författare) Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study. 2021 Ingår i: Orphanet journal of rare diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 16:1 Tidskriftsartikel (refereegranskat)abstract The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent-child agreement.We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL 4.0™ questionnaire and the condition-specific EA QOL questionnaire were used to assess children's HRQOL from parents' and children's perspectives. The PedsQL™ Family Impact Module was used to assess parental HRQOL and Family Functioning.On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. When a disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the binary logistic regression analyzes showed that the child's age, gender, and country (Germany vs. Sweden) were significant predictors of parent-child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL.The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.
37.	Witt, Stefanie, et al. (författare) Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia. 2021 Ingår i: Frontiers in pediatrics. - : Frontiers Media SA. - 2296-2360. ; 9 Tidskriftsartikel (refereegranskat)abstract Introduction/Aim: Children and adolescents with a chronic somatic disease have a higher risk of developing psychological disorders than healthy peers. Therefore, we aim to investigate internalizing and behavioral problems in pediatric patients with esophageal atresia (EA) and compare this sample with German reference values using both childrens' self-reports and parents' proxy reports. Methods: The present cross-sectional study is part of the German-Swedish EA-QOL study developing a condition-specific instrument to assess Health-related Quality of Life in children and adolescents born with EA from both self and proxy perspectives. The current analyses use data from the German sample collected within the field test phase. Participants were enrolled from the Medical School Hannover and "Auf der Bult" Children's Hospital, Hannover. The cooperating clinicians provided the medical records while socio-demographic information was collected through the parent-report within the questionnaires. We used the Strengths and Difficulties Questionnaire (SDQ) to measure internalizing and behavioral problems of children and adolescents born with EA ranging from 2 to 18 years. Results: A total of 51 families participated in the field test phase. Eighty-eight parent reports and 22 child reports were included in the analyses. While the parents' perspective from the SDQ leads to a higher percentage of abnormal or borderline behavior, there is no difference to the reference group from the children's perspective. Conclusion: Incorporating routine psychological assessment into pediatric health care can help improve understanding of the burden of illness, examine treatment outcomes, assess the quality of care, and tailor interventions to meet patient and parent needs. Involving the whole family can help develop appropriate and functional coping strategies. From our point of view, it is necessary to address parental needs and concerns as well in order to provide the best possible holistic development in the family system. The family is the basis for the children's successful development, especially for children with special health care needs.
38.	Witt, Stefanie, et al. (författare) Patient-Reported Outcomes-The Value of Observational Assessments. 2021 Ingår i: European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie. - : Georg Thieme Verlag KG. - 1439-359X. ; 31:5, s. 454-455 Tidskriftsartikel (refereegranskat)
39.	Örnö Ax, Sofie, et al. (författare) The association of feeding difficulties and generic health-related quality of life among children born with esophageal atresia 2023 Ingår i: Orphanet Journal of Rare Diseases. - 1750-1172. ; 18:1 Tidskriftsartikel (refereegranskat)abstract BackgroundChildren born with esophageal atresia experience feeding difficulties. This study investigates the association of feeding difficulties and generic health-related quality of life among children aged 2-7 and 8-17 years, born with esophageal atresia.Methods108 families (n = 36 aged 2-7 years; n = 72 aged 8-17) answered a survey regarding difficulties in their child's mealtimes and a validated generic health-related quality of life instrument(PedsQL 4.0). Clinical data was collected from hospital records. The association of feeding difficulties and health-related quality of life was analysed trough Mann-Whitney U-test. Linear regression determined whether the number of concurrent feeding difficulties in the child decreased the health-related quality of life scores. P < 0.05 was considered significant.ResultsIn children aged 2-7 and 8-17 years, to have a gastrostomy, to use a food infusion pump, need for energy-enriched food and eating small portions were respectively significantly associated with lower total health-related quality of life scores in the parent-reports (p < 0.05). Most of the feeding difficulties had a negative significant relationship with the domains of physical and social functioning. Additionally, in the older age group, long mealtimes and adult mealtime supervision were associated with lower scores in both child and parent reports. In both age groups, an increased number of feeding difficulties in the child decreased the total generic health-related quality of life scores (p < 0.01).ConclusionSpecific feeding difficulties are associated with low health-related quality of life among children with esophageal atresia. An increasing number of feeding difficulties is associated to decreasing health-related quality of life-scores. Further research is needed to understand these associations.

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