| 1. |
- 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.
|
|
| 2. |
|
|
| 3. |
- Höglund, Anna T, 1960-, et al.
(författare)
-
Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer
- 2023
-
Ingår i: Journal of Nursing Research. - : Wolters Kluwer. - 1682-3141 .- 1948-965X. ; 31:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundAlthough the rate of survival in childhood cancer today is close to 85%, a cancer diagnosis can still turn the world upside down for both children and parents. Often, children in oncology care are frustrated about their inability to control events and activities around them. Therapeutic pretend play has been suggested as a means to encourage children to express and handle emotions in a safe environment.PurposeThis study was developed to describe and explore parents' experiences of a pretend play intervention that consisted of six to eight play sessions with a play facilitator administered to their children undergoing cancer treatment.MethodsA descriptive qualitative method was used, including individual interviews with 15 parents.ResultsThree main categories were developed, including (a) experiences of joining the project, (b) perceptions of the play intervention, and (c) reflections on effects and implications, with subcategories evolved for each category. The parents experienced that the play sessions helped improve their children's communication skills and made them more capable of participating in their care. They appreciated that the intervention focused on the child's well-being and saw it as a positive break in their child's cancer treatment. It also helped them better reflect on their own situation.Conclusions/Implications for PracticeAccording to the parents' experiences, pretend play can be a helpful tool for improving children's participation in their cancer care that strengthens their autonomy, emotional repertoire, and communication skills. However, the results also highlighted that some of the children did not fully understand the information provided about this study, which weakened the validity of their consent to participate. Thus, more work is needed on developing age-appropriate information to obtain participation consent from children. In addition, more knowledge is needed regarding how to appropriately include children with cancer in research in an ethically acceptable way.
|
|
| 4. |
- 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.
|
|
| 5. |
- 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.
|
|
