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- Bullinger, M., et al.
(författare)
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Cross-Cultural Equivalence of the Patient- and Parent-Reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire
- 2014
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Ingår i: Hormone Research in Paediatrics. - : S. Karger AG. - 1663-2818 .- 1663-2826. ; 82:1, s. 18-30
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Testing cross-cultural equivalence of patient-reported outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially taking one country out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance. METHODS: Development of the QoLISSY proceeded from focus group discussions through pilot testing to field testing in 268 short-statured patients and their parents. To explore cross-cultural equivalence, the iterative TOCO technique was used to examine and compare the validity, reliability, and convergence of patient and parent responses on QoLISSY in the field test dataset, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables. RESULTS: Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors. CONCLUSION: The TOCO technique is a powerful method to overcome problems of country-specific testing of patient-reported outcome instruments. It provides an empirical support to QoLISSY's cross-cultural equivalence and is recommended for future research. (c) 2014 S. Karger AG, Basel.
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| 2. |
- Lu, S. S., et al.
(författare)
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Are urinary PAHs biomarkers of controlled exposure to diesel exhaust?
- 2014
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Ingår i: Biomarkers. - : Informa UK Limited. - 1354-750X .- 1366-5804. ; 19:4, s. 332-339
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Tidskriftsartikel (refereegranskat)abstract
- Urinary polycyclic aromatic hydrocarbons (PAHs) were evaluated as possible biomarkers of exposure to diesel exhaust (DE) in two controlled-chamber studies. We report levels of 14 PAHs from 28 subjects in urine that were collected before, immediately after and the morning after exposure. Using linear mixed-effects models, we tested for effects of DE exposure and several covariates (time, age, gender and urinary creatinine) on urinary PAH levels. DE exposures did not significantly alter urinary PAH levels. We conclude that urinary PAHs are not promising biomarkers of short-term exposures to DE in the range of 106-276 mu g/m(3).
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| 3. |
- Sommer, R., et al.
(författare)
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Experiencing health-related quality of life in paediatric short stature - a cross-cultural analysis of statements from patients and parents
- 2017
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Ingår i: Clinical Psychology and Psychotherapy. - : Wiley. - 1063-3995. ; 24:6, s. 1370-1376
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Direct assessment of the patient perspective is necessary to thoroughly understand patients' experiences of disease. We aimed to examine information from children with short stature on their perceived HrQoL within 5 European countries. METHODS: Patients, identified through clinical databases, were approached by their clinicians according to the inclusion criteria regarding a diagnosis of growth hormone deficiency or idiopathic short stature and age requirements. A focus group methodology was applied in 84 children and 112 parents. Based on a category system, individual statements were allocated to domains. To evaluate the emerging topics, qualitative content analysis was conducted. Domains and respective coding frequencies per category were compared across countries and respondents. RESULTS: The highest number of statements produced by the children and parents were related to social (29%) and emotional needs and concerns (28%). In particular, children stressed their experience of social exclusion but also their perception of social support. Regarding emotional needs, they stated mainly the desire to be taller in order to be less teased by peers. National differences were identified, for example, Swedish (22%) and British (16%) children and their parents (Sweden 26%; Britain 23%) stressed physical HrQoL aspects, whereas German children (21%) strongly focused on treatment aspects, mainly the benefit of treatment. CONCLUSION: Comprehensive knowledge of the impact of a chronic condition such as short stature on wellbeing is an important precondition of effective treatment. Because socioemotional topics were rated in all the countries to be most important, interventions aimed at improving HrQoL should target social and emotional responses to short stature. Key Practitioner Messages Focus group discussions have been shown to be a useful method for children with short stature and their parents to describe, communicate, prioritize and present aspects of health-related quality of life to health care professionals. Social and emotional aspects of living with short stature are the most frequently discussed topics by children as well as by parents across countries; these topics provide important objectives for tailoring appropriate psychosocial interventions. Clinicians should consider both child and parent concerns, include psychosocial screening tools and propose appropriate referral options for patients and family members.
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