Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire

Drosatou, Chrysoula; Vlachopapadopoulou, Elpis; Bullinger, Monika; Quitmann, Julia; Silva, Neuza; Salemi, Georgia; Pavlopoulou, Ioanna; Michalacos, Stefanos; Tsoumakas, Konstantinos

doi:10.1515/jpem-2018-0403

Cited by 9 publications

(3 citation statements)

References 37 publications

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“…Cronbach’s alpha varies between 0.65 and 0.95 [ 42 ]. The QoLISSY questionnaire is validated for ISS, IGHD [ 70 ], achondroplasia [ 71 ], and Small-for-Gestational Age [ 72 ] and is available in various languages, e.g., German, Englisch, Spain, Frech, Swedish [ 70 ], Italian [ 34 ], or Greek [ 73 ].…”

Section: Resultsmentioning

confidence: 99%

Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

Lackner

Quitmann

Kristensen

et al. 2023

IJERPH

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Children with short stature can experience a range of burdens due to their chronic condition. However, little is known about parents’ experiences dealing with their child’s short stature and the potential caregiving burdens and concerns they may face. We aim to review the literature on health-related quality of life (HRQOL), caregiving burden, and special needs among parents caring for a child with isolated growth hormone deficiency (IGHD) or idiopathic short stature (ISS). Using pre-defined inclusion and exclusion criteria, we systematically searched for literature using PubMed and Web of Science from its inception to December 2022. We identified 15 articles assessing HRQOL, special needs, or caregiving burdens in parents of IGHD/ISS children. The main problems included concerns about the future, organizational issues, side effects from growth hormone treatment, and social stigmatization. Furthermore, two studies assessed parents’ special needs to cope with caregiving stress, mainly the dialogue between them and their families or parent support groups. This review outlines parental burdens, needs, and resources when caring for an IGHD/ISS child. Furthermore, it provides information about previously used measures appraising parents’ special needs and underlines the need for disease-specific measurements.

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Section: Resultsmentioning

confidence: 99%

Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

Lackner

Quitmann

Kristensen

et al. 2023

IJERPH

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“…For these languages we decided to perform the harmonization after the cognitive debriefing in the respective countries. Interestingly, in earlier studies [ 71 , 72 , 73 , 74 ], the cross-cultural harmonization process of HRQOL instruments in children of different languages has been performed in varying ways.…”

Section: Discussionmentioning

confidence: 99%

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

2024

Children

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The EA-QOL questionnaire measures quality-of-life specifically for children born with esophageal atresia (EA) aged 8–18 and was completed in Sweden and Germany. This study aimed to describe an international collaborative initiative to establish a semantically equivalent linguistic version of the EA-QOL questionnaires in 12 new countries. The 24-item EA-QOL questionnaire was translated into the target languages and the translated questionnaire was evaluated through cognitive debriefing interviews with children with EA aged 8–18 and their parents in each new country. Participants rated an item as to whether an item was easy to understand and sensitive/uncomfortable to answer. They could choose not to reply to a non-applicable/problematic item and provide open comments. Data were analyzed using predefined psychometric criteria; item clarity ≥80%, item sensitive/uncomfortable to answer ≤20%, item feasibility(missing item responses ≤5%). Decision to improve any translation was made by native experts–patient stakeholders and the instrument developer. Like in Sweden and Germany, all items in the cross-cultural analysis of child self-report (ntot = 82, 4–10 children/country) met the criteria for item clarity in all 12 new countries, and in parent-report (ntot = 86, 5–10 parents/country) in 8/12 countries. All items fulfilled the criteria for sensitive/uncomfortable to answer (child-report 1.2–9.9%; parent-report 0–11.6%) and item feasibility. Poor translations were resolved. Hence, this study has established semantically equivalent linguistic versions of the EA-QOL questionnaire for use in children aged 8–18 with repair of EA in and across 14 countries.

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“…Bedside, Quitmann et al (2019) (43) were consistent with the current findings and concluded that improvements in quality of life of children were connected with a rise in height. Drosatou et al (2019) (44) suggested that taller children had higher quality of life. Furthermore, Silva et al (2018) (41) and Briceno al (2019) (45) found that children who treated and grew to normal height had a better quality of life than those who were not treated.…”

Section: Figure (3)mentioning

confidence: 99%

Mothers’ Knowledge and Perception toward Short Stature of Their Children and Its Effect on Quality of Life

Omar,

Bahgat,

Elhalafawy

2023

Tanta Scientific Nursing Journal

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Short stature is a global problem in children. It's important to make early identification and treatment according their causes with participation of parents in the treatment plan to improve their quality of life of their children. The study aimed to assess mothers' knowledge and perception toward short stature of their children and its effect on quality of life. Subjects and Method: A descriptive research design was used. Setting: It was carried out at Pediatric Endocrine Outpatient Clinic of Tanta Main University Hospital. Subjects: All of mothers and their children ( 106) with short stature. The study was conducted at pediatric endocrine outpatient clinic of Tanta Main University Hospital. Three Tools were used to collect the required data: Tool I: Structure Questionnaire sheet of mothers' knowledge, Tool II: Mothers' perception regarding short stature and Tool III: Quality of Life in Short Stature Youth. Results revealed that mothers had low level of knowledge and perception and half of children had poor quality of life. The study concluded that short stature children had poor quality of life that prevent him from doing things, exposed to negative comparison, and affect on their parents. The study recommended that establishing educational programs for mothers to improve their knowledge toward short stature of their children.

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Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire

Cited by 9 publications

References 37 publications

Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

Mothers’ Knowledge and Perception toward Short Stature of Their Children and Its Effect on Quality of Life

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