Gesundheitsbezogene Lebensqualität bei Kindern mit Spina bifida

Körner, I.; Schlüter, C.; Lax, Hildegard; Rübben, H.; Radmayr, Christian

doi:10.1007/s00120-006-1015-9

Cited by 8 publications

(2 citation statements)

References 24 publications

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“…Furthermore, having a serious illness does not necessarily mean a lower quality of life. A study of healthrelated quality of life in children and adolescents with spina bifida showed that there was no difference in health-related quality of life between patients and healthy children and adolescents [16]. Also, in the quality-of-life surveys of patients with esophageal atresia [11,12], asthma and type 1 diabetes [5,17], heart defects [18], cancer [19], or hereditary diseases such as Marfan syndrome [20], it was found that the diseases do not necessarily result in a poorer quality of life.…”

Section: Discussionmentioning

confidence: 99%

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Quality of Life of Children with Short Bowel Syndrome from Patients’ and Parents’ Points of View

Kießling,

Wessel,

Felcht

et al. 2024

Children

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Despite limited research, existing studies using generic quality of life (QOL) tools indicate decreased physical health and compromised emotional functioning in children with IF. This study investigates QOL in children with short bowel syndrome (SBS) and its determinants. The study included 57 pediatric patients with SBS treated at Mannheim’s University Hospital between 1998 and 2014. To evaluate QOL, the KINDL questionnaire was used. Three age-specific questionnaire variants were employed, and parental proxy reports were collected. Most patients underwent intestinal lengthening procedures, with varying primary diagnoses. A comparison with healthy children from the patient’s perspective revealed no difference but from the parent’s perspective showed lower QOL in SBS patients, especially regarding physical and mental well-being. QOL varied with age, with 7–10-year-olds reporting the lowest scores. Several factors, including independence from parenteral nutrition and the presence of a complete colon, positively influenced QOL. The independence of parenteral nutrition and the presence of a complete colon positively influenced QOL. The Bianchi technique for intestinal lengthening has also shown promise but needs further research. The observation sample in this study is too small to generalize about the whole population of SBS patients. However, this study shows that many health and treatment factors affect QOL, and a large multicenter study is necessary. Our findings underline the importance of appropriate psychological support for children with SBS and their families.

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Section: Discussionmentioning

confidence: 99%

“…Children 2024, 11, 536 2 of 16 scale" have been developed [2]. Abdominal pain, loose stools, poor eating habits, and fatigue affect the quality of life for adults.…”

Section: Introductionmentioning

confidence: 99%