| 1. |
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| 2. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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Establishment of a condition-specific quality-of-life questionnaire for children born with esophageal atresia aged 2-7 across 14 countries
- 2023
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Ingår i: Frontiers in Pediatrics. - 2296-2360. ; 11
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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.
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| 3. |
- Bloemeke, J., et al.
(författare)
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Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon
- 2020
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Ingår i: European Journal of Pediatric Surgery. - : Georg Thieme Verlag KG. - 0939-7248 .- 1439-359X. ; 30:03, s. 232-238
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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.
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| 4. |
- Dellenmark-Blom, Maria, 1983, et al.
(författare)
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Factors of family impact in a Swedish-German cohort of children born with esophageal atresia
- 2022
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Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Background After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA. Methods One parent each of a child with EA (2-18 years) in 180 families from Sweden and Germany answered the PedsQL (TM) Family Impact Module as the dependent variable. The independent variables were the child's parent-reported health-related quality of life as measured by PedsQL (TM) 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records. Results Stepwise multivariable regression analysis showed a multifactorial model of the total family impact scores (R-2 = 0.60), with independent factors being the child's overall generic health-related quality of life, school-absence >= 1/month, severe tracheomalacia, a family receiving carer's allowance, and a parent with no university/college education, p < 0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child's feeding (R-2 = 0.35) and digestive symptoms (R-2 = 0.25) explained more in the variation of scores than the child's respiratory symptoms (R-2 = 0.09), p < 0.0001. Conclusions Family functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members' perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.
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| 5. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study
- 2020
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Ingår i: European Journal of Pediatric Surgery. - : Georg Thieme Verlag KG. - 0939-7248 .- 1439-359X. ; 30:1, s. 96-103
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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.
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| 6. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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The prevalence and role of coping strategies in the nutritional intake of children born with esophageal atresia: a condition-specific approach
- 2019
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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
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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.
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| 7. |
- Mariager, S. O., et al.
(författare)
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Structural and magnetic dynamics in the magnetic shape-memory alloy Ni2MnGa
- 2014
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Ingår i: Physical Review B (Condensed Matter and Materials Physics). - 1098-0121. ; 90:16
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Tidskriftsartikel (refereegranskat)abstract
- Magnetic shape-memory Heusler alloys are multiferroics stabilized by the correlations between electronic, magnetic, and structural order. To study these correlations we use time-resolved x-ray diffraction and magneto-optical Kerr effect experiments to measure the laser induced dynamics in a Heusler alloy Ni2MnGa film and reveal a set of time scales intrinsic to the system. We observe a coherent phonon which we identify as the amplitudon of the modulated structure and an ultrafast phase transition leading to a quenching of the incommensurate modulation within 300 fs with a recovery time of a few ps. The thermally driven martensitic transition to the high temperature cubic phase proceeds via nucleation within a few ps and domain growth limited by the speed of sound. The demagnetization time is 320 fs, which is comparable to the quenching of the structural modulation.
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| 8. |
- Sommer, R., et al.
(författare)
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Experiencing health-related quality of life in paediatric short stature - a cross-cultural analysis of statements from patients and parents
- 2017
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Ingår i: Clinical Psychology and Psychotherapy. - : Wiley. - 1063-3995. ; 24:6, s. 1370-1376
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Direct assessment of the patient perspective is necessary to thoroughly understand patients' experiences of disease. We aimed to examine information from children with short stature on their perceived HrQoL within 5 European countries. METHODS: Patients, identified through clinical databases, were approached by their clinicians according to the inclusion criteria regarding a diagnosis of growth hormone deficiency or idiopathic short stature and age requirements. A focus group methodology was applied in 84 children and 112 parents. Based on a category system, individual statements were allocated to domains. To evaluate the emerging topics, qualitative content analysis was conducted. Domains and respective coding frequencies per category were compared across countries and respondents. RESULTS: The highest number of statements produced by the children and parents were related to social (29%) and emotional needs and concerns (28%). In particular, children stressed their experience of social exclusion but also their perception of social support. Regarding emotional needs, they stated mainly the desire to be taller in order to be less teased by peers. National differences were identified, for example, Swedish (22%) and British (16%) children and their parents (Sweden 26%; Britain 23%) stressed physical HrQoL aspects, whereas German children (21%) strongly focused on treatment aspects, mainly the benefit of treatment. CONCLUSION: Comprehensive knowledge of the impact of a chronic condition such as short stature on wellbeing is an important precondition of effective treatment. Because socioemotional topics were rated in all the countries to be most important, interventions aimed at improving HrQoL should target social and emotional responses to short stature. Key Practitioner Messages Focus group discussions have been shown to be a useful method for children with short stature and their parents to describe, communicate, prioritize and present aspects of health-related quality of life to health care professionals. Social and emotional aspects of living with short stature are the most frequently discussed topics by children as well as by parents across countries; these topics provide important objectives for tailoring appropriate psychosocial interventions. Clinicians should consider both child and parent concerns, include psychosocial screening tools and propose appropriate referral options for patients and family members.
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| 9. |
- Soyer, T., et al.
(författare)
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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
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Ingår i: Turkish Journal of Gastroenterology. - : AVES Publishing Co.. ; 32:8, s. 640-650
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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.
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| 10. |
- Bullinger, M., et al.
(författare)
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Cross-Cultural Equivalence of the Patient- and Parent-Reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire
- 2014
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Ingår i: Hormone Research in Paediatrics. - : S. Karger AG. - 1663-2818 .- 1663-2826. ; 82:1, s. 18-30
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Testing cross-cultural equivalence of patient-reported outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially taking one country out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance. METHODS: Development of the QoLISSY proceeded from focus group discussions through pilot testing to field testing in 268 short-statured patients and their parents. To explore cross-cultural equivalence, the iterative TOCO technique was used to examine and compare the validity, reliability, and convergence of patient and parent responses on QoLISSY in the field test dataset, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables. RESULTS: Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors. CONCLUSION: The TOCO technique is a powerful method to overcome problems of country-specific testing of patient-reported outcome instruments. It provides an empirical support to QoLISSY's cross-cultural equivalence and is recommended for future research. (c) 2014 S. Karger AG, Basel.
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| 11. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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Coping strategies used by children and adolescents born with esophageal atresia - a focus group study obtaining the child and parent perspective
- 2016
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862. ; 42:5, s. 759-767
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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.
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| 12. |
- Eriksson, Mikael, et al.
(författare)
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Diffraction-limited storage rings - a window to the science of tomorrow.
- 2014
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Ingår i: Journal of Synchrotron Radiation. - 1600-5775. ; 21:Pt 5, s. 837-842
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Tidskriftsartikel (refereegranskat)abstract
- This article summarizes the contributions in this special issue on Diffraction-Limited Storage Rings. It analyses the progress in accelerator technology enabling a significant increase in brightness and coherent fraction of the X-ray light provided by storage rings. With MAX IV and Sirius there are two facilities under construction that already exploit these advantages. Several other projects are in the design stage and these will probably enhance the performance further. To translate the progress in light source quality into new science requires similar progress in aspects such as optics, beamline technology, detectors and data analysis. The quality of new science will be limited by the weakest component in this value chain. Breakthroughs can be expected in high-resolution imaging, microscopy and spectroscopy. These techniques are relevant for many fields of science; for example, for the fundamental understanding of the properties of correlated electron materials, the development and characterization of materials for data and energy storage, environmental applications and bio-medicine.
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| 13. |
- Lubenow, Norbert, et al.
(författare)
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Very low platelet counts in post-transfusion purpura falsely diagnosed as heparin-induced thrombocytopenia. Report of four cases and review of literature.
- 2000
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Ingår i: Thrombosis Research. - 0049-3848 .- 1879-2472. ; 100:3, s. 115-25
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Tidskriftsartikel (refereegranskat)abstract
- Differential diagnosis between post-transfusion purpura (PTP) and heparin-induced thrombocytopenia (HIT) can be difficult in the initial stages of thrombocytopenia, as the early clinical presentations are often similar. Four patients are described who were suspected clinically of suffering from HIT. All four patients had recent blood transfusions and platelet alloantibodies, thus the diagnosis of PTP was made. One lethal gastrointestinal and one retroperitoneal hemorrhage developed in two of the four patients. Unusually, one patient was male and two different platelet alloantibodies were present in his serum; in another patient platelet alloantibodies and HIT-antibodies were detectable. To arrive at the right diagnosis as quickly as possible is vitally important since treatment, which has to be initiated promptly, is very different for the two syndromes. Thus, we suggest that in patients where HIT is suspected, additional information should be sought. If features consistent with PTP (such as a recent blood transfusion or a marked drop in platelet count to below 15 Gpt/L) are present, we recommend parallel testing for platelet alloantibodies to rule out PTP.
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| 14. |
- Pilet, Nicolas, et al.
(författare)
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A single probe for imaging photons, electrons and physical forces
- 2016
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Ingår i: Nanotechnology. - : IOP Publishing. - 0957-4484 .- 1361-6528. ; 27:23
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Tidskriftsartikel (refereegranskat)abstract
- The combination of complementary measurement techniques has become a frequent approach to improve scientific knowledge. Pairing of the high lateral resolution scanning force microscopy (SFM) with the spectroscopic information accessible through scanning transmission soft x-ray microscopy (STXM) permits assessing physical and chemical material properties with high spatial resolution. We present progress from the NanoXAS instrument towards using an SFM probe as an x-ray detector for STXM measurements. Just by the variation of one parameter, the SFM probe can be utilised to detect either sample photo-emitted electrons or transmitted photons. This allows the use of a single probe to detect electrons, photons and physical forces of interest. We also show recent progress and demonstrate the current limitations of using a high aspect ratio coaxial SFM probe to detect photo-emitted electrons with very high lateral resolution. Novel probe designs are proposed to further progress in using an SFM probe as a STXM detector.
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| 15. |
- Rozensztrauch, A., et al.
(författare)
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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
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601. ; 19:13
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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.
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