Lebensqualität und Belastung von Familien mit Kindern, die aufgrund von Wirbelsäulendeformitäten operativ mit wachstumsfreundlichen Implantaten versorgt wurden

Health-related quality of life and burden of families with children who have been surgically treated with growth-friendly implants due to spinal deformities

by Jennifer Behrend
Doctoral thesis
Date of Examination:2021-10-12
Date of issue:2021-10-05
Advisor:Prof. Dr. Anna-Kathrin Hell
Referee:Prof. Dr. Ekkehard Wilichowski
Referee:Prof. Dr. Ralf Dressel
Persistent Address: http://dx.doi.org/10.53846/goediss-8861

 

 

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Abstract

English

The construct of health-related quality of life (HRQoL) is becoming more and more important for recording the subjective state of health. Above all, the increase in chronic diseases in childhood emphasize the need for valid measuring instruments when dealing with children. In the present study, the quality of life and burden of families, whose children were provided with growth-friendly implants due to progressing spinal deformity, were examined. Firstly, the English-language early-onset scoliosis questionnaire (EOSQ-24) with 24 items was translated into a German version (EOSQ-24-G) and validated. The German version, the EOSQ-24-G, was then applied to 67 (33 male, 34 female) early-onset scoliosis (EOS) patients with an average age of 8.7 years at the time of the survey. The data quality was assessed by mean, standard deviation, percentage of missing data and extent of the ceiling and floor effects. Reliability was assessed by internal consistency using Cronbach’s α and item-total correlations. In this collective, 12 children were conservatively (n = 7 observed, n = 5 with brace treatment) and 55 patients were treated surgically with growth-friendly implants. All items showed very good to excellent internal consistencies (0.879 to 0.903). The floor effects were between 0% and 31% and the ceiling effects between 9% and 78%. The calculated Cronbach's α for the 24-point scale was 0.903, which indicates excellent reliability. Secondly, the health-related quality of life was evaluated in 45 families with children under 10 years of age. 42% of the children were treated with the VEPTR® implant, which has to be surgically extended every 6 months, 58% of the children received the MAGEC® implant, which is externally extended every 3 months. The EOSQ-24-G and the German universal questionnaire KINDL®, which specializes in children and adolescents, were used to measure quality of life. The results of both tests were compared and factors influencing quality of life were evaluated. HRQoL was not affected by age, gender, body mass index, implant type and follow-up treatment, number of planned surgical interventions, extent of scoliosis before and after the primary surgery or during the course, as well as the distance to the clinic. However, complication rate, impaired walking ability and etiology showed influence on health-related quality of life.
Keywords: quality of life; early onset scoliosis; EOSQ-24; spine; health related quality of time; VEPTR; MAGEC; influencing factors
 
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