Gesundheitsbezogene Lebensqualität und psychische Gesundheit von kleinwüchsigen Kindern und Jugendlichen

Quitmann, Julia; Behncke, Janina; Dörr, H. G.; Willig, R. P.; Wüsthof, Achim; Stahnke, N; Jakisch, Bele; Partsch, Carl-Joachim; Nöker, Meinolf; Kuhnle-Krahl, Ursula; Rohenkohl, Anja; Bullinger, Monika

doi:10.3233/zmp-2012-210015

Cited by 12 publications

(17 citation statements)

References 33 publications

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“…In this study, it was found that the social and emotional aspects of living with short stature were the most frequently discussed topics by children, as well as by parents from all countries. This is in line with findings of previous studies, which have shown that short stature is associated with, for example, stigmatization and social isolation as compared to taller peers, which can cause chronic psychosocial stress (Bullinger et al, ; Naiki et al, ; Quitmann et al, ). Socioemotional issues play an important role in children with chronic conditions, as suggested by studies that used focus groups to assess HrQoL in children with chronic conditions like celiac disease or neonatal brachial plexus palsy (Chang et al, ).…”

Section: Methodssupporting

confidence: 92%

“…In a study by Voss and Mulligan, , short children reported being bullied frequently. Short stature has also been reported to be associated with stigmatization and a higher degree of social isolation compared to taller peers, which can result in chronic psychosocial stress (Bullinger et al, ; Naiki, Horikawa, Tanaka, Child, & Development, ; Quitmann et al, ). Parents describe their short‐statured children to be less socially competent and to generally have more problems of a social nature than parents of children with normal height (Quitmann et al, ; Visser‐van Balen, Sinnema, & Geenen, ).…”

Section: Introductionmentioning

confidence: 99%

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Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

Sommer

Bullinger

Chaplin

et al. 2017

Clin Psychology and Psychoth

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Section: Methodssupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

Sommer

Bullinger

Chaplin

et al. 2017

Clin Psychology and Psychoth

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“…Short stature is reported to cause various deficiencies in physical aspects of daily life and in emotional- and social well-being (2, 6). Furthermore, chronic psychosocial stress, stigmatization and social isolation, frequent bullying and less social competencies than in children who are of normal height have been reported in short statured children impacting on the children's health-related quality of life (HRQOL) (7–9).…”

Section: Introductionmentioning

confidence: 99%

Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

et al. 2019

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Aside from clinical endpoints like height gain, health-related quality of life has also become an important outcome indicator in the medical field. However, the data on short stature and health-related quality of life is inconsistent. Therefore, we examined changes in health-related quality of life in German children with idiopathic growth hormone deficiency or children born small for gestational age before and after 12 months of human growth hormone treatment. Children with idiopathic short stature without treatment served as a comparison group. At baseline, health-related quality of life data of 154 patients with idiopathic growth hormone deficiency ( n = 65), born small for gestational age ( n = 58), and idiopathic short stature ( n = 31) and one parent each was collected. Of these, 130 completed health-related quality of life assessments after 1-year of human growth hormone treatment. Outcome measures included the Quality of Life in Short Stature Youth questionnaire, as well as clinical and sociodemographic data. Our results showed that the physical, social, and emotional health-related quality of life of children treated with human growth hormone significantly increased, while untreated patients with idiopathic short stature reported a decrease in these domains. Along with this, a statistically significant increase in height in the treated group can be observed, while the slight increase in the untreated group was not significant. In conclusion, the results showed that human growth hormone treatment may have a positive effect not only on height but also in improving patient-reported health-related quality of life of children with idiopathic growth hormone deficiency and children born small for gestational age.

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“…In a study from Voss and Mulligan [ 15 ] for example, short children reported that they were bullied frequently [ 16 ]. Short stature has also been reported to be associated with stigmatization and social isolation which can cause chronic psychosocial stress [ 17 ]. Though these experiences do not necessarily result in clinically relevant problems, parents report their children to be less socially competent and to generally have more problems of a social nature than parents of children with normal height [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

“…Short statured children scored significantly lower on most scales, e.g. Psychological Well-being, Self-Perception and Social Support & Peers, but did not significantly differ from the non-short children on the Parent Relations & Home Life and Financial Resources scales [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States

Bullinger

Sommer

Pleil

et al. 2015

Health Qual Life Outcomes

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BackgroundThe European Quality of Life in Short Stature Youth (QoLISSY) is a novel condition-specific instrument developed to assess health related quality of life (HrQoL) in children/adolescents with short stature from patient and parent perspectives. Study objective was to linguistically validate and psychometrically test the American-English version of the QoLISSY instrument.MethodsUpon conversion of the British-English version to American-English, content validity and acceptance of the questionnaire were examined through focus group discussions with cognitive debriefing in 28 children/adolescents with growth hormone deficiency (GHD) or idiopathic short stature (ISS) and their parents. In the subsequent field test with 51 families and a re-test with 25 families the psychometric performance of the American-English version was examined and compared with the original European dataset.ResultsPilot test results supported the suitability of the American-English version. Good internal consistency with Cronbach’s Alpha ranging from 0.84 to 0.97 and high test-re-test reliabilities were observed in the field test. The QoLISSY was able to detect significant differences according to the degree of short stature with higher HrQoL for taller children. Correlations with a generic HrQoL tool support the QoLISSY’s concurrent validity. The scale’s operating characteristics were comparable to the original European data.ConclusionResults support that the QoLISSY American-English version is a psychometrically sound short stature-specific instrument to assess the patient- and parent- perceived impact of short stature. The QoLISSY instrument is fit for use in clinical studies and health services research in the American-English speaking population.

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Gesundheitsbezogene Lebensqualität und psychische Gesundheit von kleinwüchsigen Kindern und Jugendlichen

Cited by 12 publications

References 33 publications

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States

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