Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients

2016 ◽  
Vol 51 (4) ◽  
pp. 563-569 ◽  
Author(s):  
Michaela Dellenmark-Blom ◽  
John Eric Chaplin ◽  
Vladimir Gatzinsky ◽  
Linus Jönsson ◽  
Helena Wigert ◽  
...  
2018 ◽  
Vol 45 (1) ◽  
pp. 79-88 ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark‐Blom ◽  
Sofie Flieder ◽  
Jens Dingemann ◽  
Kate Abrahamsson ◽  
...  

2020 ◽  
Vol 30 (03) ◽  
pp. 239-250
Author(s):  
Michaela Dellenmark-Blom ◽  
Julia Quitmann ◽  
Carmen Dingemann

AbstractPatients 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.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.


2015 ◽  
Vol 5 (S3) ◽  
Author(s):  
Sven-Arne Jansson ◽  
Eva Östblom ◽  
Jennifer Protudjer ◽  
Marianne Heibert Arnlind ◽  
Ulf Bengtsson ◽  
...  

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