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  • 1.
    Almqvist, C
    et al.
    Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Egmar, Ann-Charlotte
    Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Hedlin, G
    Department of Woman and Child Health, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Lundqvist, M
    Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Nordvall, S L
    Institute of Woman and Child Health, Uppsala University, Uppsala.
    Pershagen, G
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm.
    Svartengren, M
    Department of Public Health Sciences, Karolinska Institutet, Stockholm.
    van Hage-Hamsten, M
    Department of Medicine, Unit of Clinical Immunology and Allergy, Karolinska Institutet and Hospital, Stockholm.
    Wickman, M
    Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Direct and indirect exposure to pets: - risk of sensitization and asthma at 4 years in a birth cohort2003In: Clinical and Experimental Allergy, ISSN 0954-7894, E-ISSN 1365-2222, Vol. 33, no 9, p. 1190-1197Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: There are conflicting data on the association between early exposure to pets and allergic diseases. Bias related to retrospective information on pet ownership has been addressed as a reason for distorted study results.

    OBJECTIVE: To elucidate how early exposure to cat and dog relates to IgE-sensitization and asthma in children at 2 and 4 years of age, in a prospective birth-cohort study.

    METHODS: Four thousand and eighty-nine families with children born 1994-1996 in predefined areas of Stockholm answered questionnaires on environmental factors and symptoms of allergic disease at birth, one, two and four years of age. Dust samples collected from the mothers' beds at birth were analysed for Fel d 1 and Can f 1 in a subgroup of the cohort. Blood samples taken at four years from 2614 children were analysed for allergen-specific IgE to common airborne allergens. Risk associations were calculated with a multiple logistic regression model, with adjustment for potential confounders.

    RESULTS: A correlation was seen between allergen levels and reported exposure to cat and dog. Exposure to cat seemed to increase the risk of cat sensitization, OR (odds ratio) 1.44 (95% confidence interval 1.03-2.01), whereas dog exposure did not have any effect on dog sensitization, OR 1.16 (0.79-1.72). Dog ownership was related to a reduced risk of sensitization to other airborne allergens, OR 0.36 (0.15-0.83), and a similar tendency was seen for cat ownership OR 0.63 (0.37-1.07). Early dog ownership seemed to be associated with a lower risk of asthma, OR 0.50 (0.24-1.03), with no corresponding effect after cat ownership, OR 0.88 (0.56-1.38).

    CONCLUSION: Early exposure to cat seems to increase the risk of sensitization to cat but not of asthma at 4 years of age. Dog ownership, on the other hand, appears to be associated with lowered risk of sensitization to airborne allergens and asthma. Both aetiological relationships and selection effects have to be considered in the interpretation of these findings.

  • 2.
    Almqvist, C
    et al.
    The Department of Environmental Health, Karolinska Hospital, Stockholm.
    Larsson, P H
    National Institute for Working Life, Stockholm.
    Egmar, Ann-Charlotte
    The Department of Environmental Health, Karolinska Hospital, Stockholm.
    Hedrén, M
    National Institute for Working Life, Stockholm.
    Malmberg, P
    National Institute for Working Life, Stockholm.
    Wickman, M
    The Department of Environmental Health, Karolinska Hospital, Stockholm.
    School as a risk environment for children allergic to cats and a site for transfer of cat allergen to homes1999In: Journal of Allergy and Clinical Immunology, ISSN 0091-6749, E-ISSN 1097-6825, Vol. 103, no 6, p. 1012-1017Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Many children are allergic to furred pets and avoid direct pet contact. The school may be a site of indirect exposure to pet allergens, which may induce or maintain symptoms of allergic diseases.

    OBJECTIVE: We sought to investigate airborne levels of cat allergen (Fel d 1) at schools and in homes with or without cats and to study clothes as a route for dissemination of allergens between homes and school.

    METHODS: Airborne cat allergen was collected with personal samplers from (1) children attending classes with many (>25%) or few (<10%) cat owners and (2) homes with or without cats. A recently developed amplified ELISA assay, which detects low levels of airborne cat allergen in pet-free environments, was used. Dust samples were collected from clothes and mattresses.

    RESULTS: There was a 5-fold difference in the median levels of airborne cat allergen between classes with many and few cat owners (2.94 vs 0.59 ng/m3; P <.001). The median airborne cat allergen concentration in classes with many cat owners was significantly higher than that found in the homes of non-cat owners (P <.001) but lower than that found in homes with cats (P <.001). Allergen levels in non-cat owners' clothes increased after a school day (P <.001). Non-cat owners in classes with many cat owners had higher levels of mattress-bound cat allergen (P =.01).

    CONCLUSION: The results indicate significant exposure to cat allergen at school. Allergen is spread through clothing from homes with cats to classrooms. There the allergen is dispersed in air and contaminates the clothes of children without cats. The allergen levels in non-cat owners' homes correlate with exposure to cat allergen at school.

  • 3.
    Almqvist, Catarina
    et al.
    The Department of Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Egmar, Ann-Charlotte
    The Department of Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    van Hage-Hamsten, Marianne
    The Department of Medicine, Unit of Clinical Immunology and Allergy, Karolinska Institutet, Stockholm.
    Berglind, Niklas
    The Department of Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Pershagen, Göran
    The Institute of Environmental Medicine, Karolinska Institutet.
    Nordvall, S Lennart
    The Institute of Woman and Child Health, Uppsala University, Uppsala.
    Svartengren, Magnus
    The Department of Public Health Sciences, Karolinska Institutet.
    Hedlin, Gunilla
    The Department of Woman and Child Health, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Wickman, Magnus
    The Department of Occupational and Environmental Health, Karolinska Hospital, Stockholm.
    Heredity, pet ownership, and confounding control in a population-based birth cohort2003In: Journal of Allergy and Clinical Immunology, ISSN 0091-6749, E-ISSN 1097-6825, Vol. 111, no 4, p. 800-806Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The association between pet ownership in childhood and subsequent allergic disease is controversial. Bias related to selection of pet exposure has been suggested as a reason for contradictory study results.

    OBJECTIVE: The purpose of this investigation was to elucidate how pet exposure depends on family history of allergic disease, smoking, and socioeconomic factors in a prospective birth cohort.

    METHODS: Parents of 4089 two-month-old children answered a questionnaire that included detailed questions about family history of asthma (maternal, paternal, and sibling), rhinoconjunctivitis, atopic eczema/dermatitis syndrome, pollen and pet allergy, smoking habits, parental occupation, and family pet ownership (cat and dog). Dust samples collected from the mothers' beds were analyzed for Fel d 1 and Can f 1 in a subgroup of the cohort.

    RESULTS: Cats were less frequently kept in families with parental asthma, rhinoconjunctivitis, or pet or pollen allergy (3.5% to 5.8%) than in families without parental allergic disease (10.8% to 11.8%). Dogs were less common in families with (3.3%) than in families without (5.9%) parental atopic eczema/dermatitis syndrome. Families with smoking mothers and those with low socioeconomic index kept cats and dogs more frequently. Cat allergen levels were lower in homes with than in homes without maternal pet allergy, and this tended to hold true even for homes without a cat. Cat ownership decreased from birth to 2 years of age, especially in families with parental history of allergic diseases.

    CONCLUSION: There seems to be a selection of pet exposure based on parental history of allergy, maternal smoking, and socioeconomic factors. This has to be taken into consideration in evaluations of risk associations between pet exposure and allergic disease in childhood.

  • 4.
    Bergfors, Sofi
    et al.
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm; Stockholm County Council, Health Care Services, Stockholm.
    Åström, Mimmi
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm; Stockholm County Council, Health Care Services, Stockholm.
    Burström, Kristina
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm; Stockholm County Council, Health Care Services, Stockholm; Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm.
    Measuring health-related quality of life with the EQ-5D-Y instrument in children and adolescents with asthma2015In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 104, no 2, p. 167-173Article in journal (Refereed)
    Abstract [en]

    AIM: Asthma is one of the most common chronic paediatric diseases worldwide and affects different dimensions of health-related quality of life. This study tested the feasibility and convergent validity of using the EQ-5D-Y instrument on children and adolescents with asthma.

    METHODS: A cross-sectional design was chosen, and children with asthma, aged from 8 to 16 years, were recruited from clinics in Stockholm, Sweden. To test convergent validity, the EQ-5D-Y instrument was combined with the Paediatric Quality of Life Questionnaire.

    RESULTS: The EQ-5D-Y proved feasible as nearly 96% of the 94 respondents completed all items on the questionnaire. High and moderate correlations between the two instruments were found for the dimensions of 'doing usual activities' and 'activity limitations' and for 'having pain or discomfort' and 'symptoms'. The visual analogue scale of the ED-5D-Y correlated with the Paediatric Quality of Life Questionnaire total score and the self-rated health question. The dimensions on the EQ-5D-Y with most reported problems were 'usual activities', 'pain or discomfort' and 'worried, sad or unhappy'.

    CONCLUSION: The EQ-5D-Y instrument seemed to provide feasibility and convergent validity for measuring health-related quality of life in children and adolescents with asthma.

  • 5.
    Burström, Kristina
    et al.
    Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden; Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm, Sweden; Stockholm County Council, Health Care Services, Stockholm, Sweden.
    Bartonek, Å
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden; Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden.
    Broström, EW
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden;Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden.
    Sun, S
    Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden; Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm, Sweden; Stockholm County Council, Health Care Services, Stockholm, Sweden.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College. Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility andvalidity2014In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, no 4, p. 426-435Article in journal (Refereed)
  • 6.
    Burström, Kristina
    et al.
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Lugnér, Anna
    Centre for Infectious Disease Control Netherlands (CIb), Epidemiology and Surveillance Unit (EPI), National Institute for Public Health and the Environment (RIVM), The Netherlands.
    Eriksson, Margareta
    Department of Pediatrics, Sachs’ Children’s Hospital, Södersjukhuset AB, Stockholm.
    Svartengren, Magnus
    Department of Public Health Sciences, Division of Occupational and Environmental Medicine, Karolinska Institutet, Stockholm.
    A Swedish child-friendly pilot version of the EQ-5D instrument: the development process2011In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360X, Vol. 21, no 2, p. 171-177Article in journal (Refereed)
    Abstract [en]

    Background: Revising existing health related-quality of life (HRQoL) instruments used among adults with the intention of making them child-friendly enables the collection of similar HRQoL data in children, adolescents and adults. The aim of this article is to describe and discuss the development process of a Swedish child-friendly pilot version of the EQ-5D instrument. 

    Methods: We modified the existing Swedish EQ-5D adult version to make it child-friendly. Within a multidisciplinary research group, we investigated linguistic and interpretation issues by performing face-to-face and group interviews with children and adolescents aged 6–17 years. 

    Results: The first modification of the adult language was to change single words into words intelligible to and used by children [e.g. changing ‘depression’ (depression) into ‘ledsen’ (sad)]. The second related to whole expressions (using verb-form in the headings of dimensions).

    Conclusion: The advantage of being able to collect much the same data from children and adolescents, for example in population surveys covering all ages and in chronic childhood diseases, as for adults might outweigh possible disadvantages of modifying existing HRQoL instruments. The Swedish child-friendly EQ-5D pilot version resulting from this development process is further tested for feasibility and construct validity in a clinical interview study; initial results are reported in a subsequent paper.

  • 7.
    Burström, Kristina
    et al.
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm.
    Svartengren, Magnus
    Department of Public Health Sciences, Division of Occupational and Environmental Medicine, Karolinska Institutet, Stockholm.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing. Department of Public Health Sciences, Division of Occupational and Environmental Medicine, Karolinska.
    Testing a Swedish child-friendly pilot version of the EQ-5D instrument: — initial results2011In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360X, Vol. 21, no 2, p. 178-183Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    There is an increasing interest in studying health-related quality of life in children and adolescents. A Swedish child-friendly pilot version of the EQ-5D instrument has been developed. The aim of this article is to report on its assessment of feasibility and discriminative validity.

    METHODS:

    A questionnaire with the child-friendly pilot version was addressed during a clinical examination to 260 children aged 8 years and 230 children aged 12 years. Comprehensibility and acceptability were investigated and feasibility was assessed according to missing and ambiguous answers. Discriminative validity was investigated by determining whether groups that were a priori known to differ in health status (by clinical and socio-demographic characteristics) were distinguished also by the percentage of reported problems on the five health dimensions and by visual analogue scale (VAS) scores.

    RESULTS:

    Feasibility was supported for self-completion in the presence of an interviewer. Discriminative validity was supported as children with asthma or rhinitis, severe illness or handicap, having consulted health care during the past 3 months, overweight and obesity and children with a parent born outside the Nordic countries reported more problems and had lower VAS scores.

    CONCLUSIONS:

    The results of the initial testing of the Swedish child-friendly pilot version of the EQ-5D instrument indicate feasibility and discriminative validity. However, further research should explore alternative modes of administration and study design, and be performed in groups with a larger proportion with diseased children.

  • 8.
    Egmar, Ann-Charlotte
    et al.
    Department of Environmental Health, Stockholm County Council, Stockholm.
    Almqvist, C
    Department of Environmental Health, Stockholm County Council, Stockholm.
    Emenius, G
    Department of Environmental Health, Stockholm County Council, Stockholm.
    Lilja, G
    Department of Environmental Health, Stockholm County Council, Stockholm.
    Wickman, M
    Department of Environmental Health, Stockholm County Council, Stockholm.
    Deposition of cat (Fel d 1), dog (Can f 1), and horse allergen over time in public environments--a model of dispersion1998In: Allergy. European Journal of Allergy and Clinical Immunology, ISSN 0105-4538, E-ISSN 1398-9995, Vol. 53, no 10, p. 957-961Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The occurrence and accumulation over time in public environments of cat, dog, and horse allergens was evaluated.

    METHODS: Concentrations of animal danders were analyzed by ELISA and countercurrent immunoelectrophoresis (CCIE).

    RESULTS: Among factory-new mattresses, 15/17 contained detectable levels of cat and/or dog allergen, whereas no horse allergen was found although six of the mattresses were stuffed with horsehair. Dust from 15 used mattresses contained significantly higher concentrations of Fe1 d 1 and Can f 1 than the factory-new ones (P < 0.001). Allergen concentrations and titers correlated to the period of time that the mattresses had been tried by customers; rs = 0.52-0.77, P = 0.04-0.001 (cat), rs = 0.38-0.48, P = 0.15-0.08 (dog), and rs = 0.64-0.74, P = 0.008-0.003 (horse). The increase over time occurred rapidly in highly frequented stores and after 3 weeks reached concentrations that have been found in homes where furred pets had formerly been kept or even the lower allergen scale of homes where pets were currently kept.

    CONCLUSIONS: The dispersion of allergens from furred animals to pet-free public places is likely to occur by deposition from people who have been in direct or indirect contact with pets, and high levels of such allergens seem to accumulate in a short period of time.

  • 9.
    Egmar, Ann-Charlotte
    et al.
    Department of Environmental Health, Stockholm County Council, St Goran's Children's Hospital, Karolinska Institute, Stockholm.
    Emenius, G
    Department of Environmental Health, Stockholm County Council, St Goran's Children's Hospital, Karolinska Institute, Stockholm.
    Almqvist, C
    Department of Environmental Health, Stockholm County Council, St Goran's Children's Hospital, Karolinska Institute, Stockholm.
    Wickman, M
    Department of Environmental Health, Stockholm County Council, St Goran's Children's Hospital, Karolinska Institute, Stockholm.
    Cat and dog allergen in mattresses and textile covered floors of homes which do or do not have pets, either in the past or currently1998In: Pediatric Allergy and Immunology, ISSN 0905-6157, E-ISSN 1399-3038, Vol. 9, no 1, p. 31-35Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to measure the levels of cat and dog allergen in homes of families that had either never kept pets or kept or had kept cats or dogs. From a small residential area outside Stockholm consisting of 250 houses with similar exteriors 70 homes were included. Dust samples were collected from mattresses and textile-covered floors. The levels of cat and dog allergen were analysed by ELISA. Fel d1 was found in mattress dust in all 70 homes, median 0.5 micrograms/g [0.24-8.89 micrograms/g (quartiles)] and textile-covered floors 0.7 micrograms/g (0.20-2.52 micrograms/g). Can f1, was found in 98% of the collected samples, mattress dust 1.89 micrograms/g (0.70-9.20 micrograms/g) and textile-covered floor dust 2.5 micrograms/g (1.04-2.72 micrograms/g). There was a positive correlation (p < 0.001) between allergen levels in dust from mattresses and textile-covered floors for both Fel d1 (r = 0.68) and Can f1 (r = 0.78). The highest levels of cat and dog allergen were found in homes with furred pets (p < 0.001). A significant (p < 0.001) difference was seen in the levels of Fel d1 and Can f1 between the homes of former pet-owners and homes without pets. In summary; cat and dog allergens are present in homes regardless of whether such animals live in the house or not. Mattresses seem to be an underestimated reservoir for pet allergens even in homes without pets. It is important to note that the homes of former pet owners have much lower levels of allergen than current pet owners.

  • 10.
    Gedin, F
    et al.
    Karolinska Institutet / Scandinavian College of Chiropractic.
    Dansk, V
    Scandinavian College of Chiropractic.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Sundberg, T
    Karolinska Institutet.
    Burström, K
    Karolinska Institutet / Stockholm County Council.
    Patient-reported improvements of pain, disability, and health-related quality of life following chiropractic care for back pain - A national observational study in Sweden2019In: Journal of Bodywork & Movement Therapies, ISSN 1360-8592, E-ISSN 1532-9283, Vol. 23, no 2, p. 241-246Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Chiropractic care is a common but not often investigated treatment option for back pain in Sweden. The aim of this study was to explore patient-reported outcomes (PRO) for patients with back pain seeking chiropractic care in Sweden.

    METHODS: Prospective observational study. Patients 18 years and older, with non-specific back pain of any duration, seeking care at 23 chiropractic clinics throughout Sweden were invited to answer PRO questionnaires at baseline with the main follow-up after four weeks targeting the following outcomes: Numerical Rating Scale for back pain intensity (NRS), Oswestry Disability Index for back pain disability (ODI), health-related quality of life (EQ-5D index) and a visual analogue scale for self-rated health (EQ VAS).

    RESULTS: 246 back pain patients answered baseline questionnaires and 138 (56%) completed follow-up after four weeks. Statistically significant improvements over the four weeks were reported for all PRO by acute back pain patients (n = 81), mean change scores: NRS -2.98 (p < 0.001), ODI -13.58 (p < 0.001), EQ VAS 9.63 (p < 0.001), EQ-5D index 0.22 (p < 0.001); and for three out of four PRO for patients with chronic back pain (n = 57), mean change scores: NRS -0.90 (p = 0.002), ODI -2.88 (p = 0.010), EQ VAS 3.77 (p = 0.164), EQ-5D index 0.04 (p = 0.022).

    CONCLUSIONS: Patients with acute and chronic back pain reported statistically significant improvements in PRO four weeks after initiated chiropractic care. Albeit the observational study design limits causal inference, the relatively rapid improvements of PRO scores warrant further clinical investigations.

  • 11.
    Jonsson, M.
    et al.
    Department of Womans and Childrens Health, Karolinska Institutet / Centre of Occupational and Environmental Medicine, Stockholm County Counsil.
    Bergström, A.
    Karolinska Institutet, Institute of Environmental Medicine.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet.
    Wickman, M.
    Karolinska Institutet, Institute of Environmental Medicine / Sachs’ Children's Hospital, Södersjukhuset.
    Lind, T.
    Centre of Occupational and Environmental Medicine, Stockholm County Counsil / Karolinska Institutet, Institute of Environmental Medicine.
    Kull, I
    Karolinska Institutet, Institute of Environmental Medicine / Sachs’ Children's Hospital, Södersjukhuset / Department of Clinical Science and Education, Stockholm South General Hospital, Karolinska Institutet.
    Health related quality of life among adolescents with asthma2014In: Allergy. European Journal of Allergy and Clinical Immunology, ISSN 0105-4538, E-ISSN 1398-9995, Vol. 69, no Suppl. 99: SI, p. 328-328Article in journal (Other academic)
  • 12.
    Jonsson, M
    et al.
    Center of Occupational and Environmental Medicine, Stockholm County Council, Stockholm.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Hallner, E
    Center of Occupational and Environmental Medicine, Stockholm County Council, Stockholm.
    Kull, I
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm.
    Experiences of living with asthma: a focus group study with adolescents and parents of children with asthma2014In: Journal of Asthma, ISSN 0277-0903, E-ISSN 1532-4303, Vol. 51, no 2, p. 185-192Article in journal (Refereed)
    Abstract [en]

    Objective: The goal for asthma treatment is that every individual, so far as possible, shall live without symptoms and exacerbations. Patients and health care professionals sometimes have different perceptions of what is important for achieving good quality of life. This work aims to describe the experiences among adolescents as well as those of parents with young children living with asthma. Methods: Four focus group interviews were performed, two with parents of young children and two with adolescents. The data were qualitatively analyzed, using Systematic Text Condensation. Result: Three themes relevant to the participants’ experiences of living with asthma were presented; strategies, frustrations and expectations. The adolescents wanted to be like their peers and developed their own strategies for self-management of asthma, which included not always taking medication as prescribed. The parents emphasized frustration regarding not being believed, lack of understanding feelings of loneliness, or anxiety. One identified expectation was that the participants wanted to be met with competence and understanding in asthma care from health care professionals. Another expectation expressed among parents was that teachers in nursery and primary schools should have more knowledge and understanding on how to care for children with asthma. Conclusion: Living with asthma leads to developing personal strategies in self-management of asthma. Moreover both parents and adolescents had expectations of being met by competent and understanding health care professionals. Developing a partnership between patients and health care professionals could be a successful way to improve the care of patients with asthma.

  • 13.
    Jonsson, Marina
    et al.
    Centre of Occupational and Environmental Medicine, Stockholm County Council; Department of Women's and Children's Health, Karolinska Institutet.
    Bergström, Anna
    Institute of Environmental Medicine, Karolinska Institutet.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Public Health and Medicine.
    Hedlin, Gunilla
    Department of Women's and Children's Health, Karolinska Institutet; Centre for Allergy Research, Karolinska Institutet; Astrid Lindgren Children's Hospital, Karolinska University Hospital.
    Lind, Tomas
    Centre of Occupational and Environmental Medicine, Stockholm County Council; Institute of Environmental Medicine, Karolinska Institutet.
    Kull, Inger
    Institute of Environmental Medicine, Karolinska Institutet; Sachs' Children's Hospital, Södersjukhuset; Department of Clinical Science and Education, Stockholm South General Hospital, Karolinska Institutet.
    Asthma during adolescence impairs health-related quality of life2016In: Journal of Allergy and Clinical Immunology: In Practice, ISSN 2213-2198, E-ISSN 2213-2201, Vol. 4, no 1, p. 144-146Article in journal (Refereed)
    Abstract [en]

    Clinical Implications

    Asthma during adolescence impairs health-related quality of life, especially if the asthma is uncontrolled. To use questions about health-related quality of life (HRQoL) and markers associated with asthma control in the clinic can identify adolescents with an increased risk for impaired HRQoL.

  • 14.
    Jonsson, Marina
    et al.
    Pediatric Outpatient Clinic, Astrid Lindgrens Children’s Hospital, Stockholm.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Kiessling, Anna
    Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm.
    Ingemansson, Maria
    Pediatric Outpatient Clinic, Astrid Lindgrens Children’s Hospital, Stockholm.
    Hedlin, Gunilla
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm.
    Krakau, Ingvar
    Center for Family and Community Medicine, Stockholm.
    Hallner, Eva
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm.
    Kull, Inger
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm.
    Adherence to national guidelines for children with asthma at primary health centres in Sweden: potential for improvement2012In: Primary Care Respiratory Journal, ISSN 1471-4418, E-ISSN 1475-1534, Vol. 21, no 3, p. 276-282Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although asthma is the most common chronic paediatric disease in Western Europe, the extent of adherence to guidelines for primary care management of paediatric asthma remains unclear. AIMS: To evaluate adherence to national guidelines for primary care management of children with asthma. METHODS: This survey involved 18 primary healthcare centres in Stockholm, Sweden. The medical records of 647 children aged 6 months to 16 years with a diagnosis of asthma, obstructive bronchitis, or cough were selected and scrutinised. 223 children with obstructive bronchitis or cough not fulfilling the evidence-based criteria for asthma were excluded, yielding a total of 424 subjects. Documentation of the most important indicators of quality as stipulated in national guidelines (i.e., tobacco smoke, spirometry, pharmacological treatment, patient education, and demonstration of inhalation technique) was examined. RESULTS: Only 22% (n=49) of the children 6 years of age or older had ever undergone a spirometry test, but the frequency was greater when patients had access to an asthma nurse (p=0.003). Although 58% (n=246) of the total study population were treated with inhaled steroids, documented patient education and demonstration of inhalation technique was present in 14% (n=59). Exposure to tobacco smoke was documented in 14% (n=58). CONCLUSIONS: This study reveals a substantial gap between the actual care provided for paediatric asthma and the recommendations formulated in national guidelines.

  • 15.
    Jonsson, Marina
    et al.
    Stockholm County Council / Karolinska Institutet.
    Schuster, Marja
    The Swedish Red Cross University College, Department of Technology and Welfare.
    Protudjer, Jennifer L P
    Karolinska Institutet.
    Bergström, Anna
    Karolinska Institutet.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Public Health and Medicine. Karolinska Institutet.
    Kull, Inger
    Karolinska Institutet / Sachs' Children's Hospital, Södersjukhuset.
    Experiences of Daily Life Among Adolescents With Asthma - A Struggle With Ambivalence2017In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 35, p. 23-29Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma.

    METHODS: In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation.

    RESULTS: Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers.

    CONCLUSIONS: Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma.

    IMPLICATIONS IN CLINICAL PRACTICE: The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.

  • 16.
    Kreimeier, Simone
    et al.
    Bielefeld University, Bielefeld, Germany.
    Åström, Mimmi
    Karolinska Institutet / Stockholm County Council.
    Burström, Kristina
    Karolinska Institutet / Stockholm County Council.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Gusi, Narcis
    University of Extremadura, Badajoz, Spain.
    Herdman, Michael
    Office of Health Economics, London, UK.
    Kind, Paul
    University of Leeds, Leeds, UK / Higher School of Economics, St Petersburg, Russia.
    Perez-Sousa, Miguel A
    University of Extremadura, Badajoz, Spain.
    Greiner, Wolfgang
    Bielefeld University, Bielefeld, Germany.
    EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories.2019In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 28, no 7, p. 1951-1961Article in journal (Refereed)
    Abstract [en]

    PURPOSE: EQ-5D-Y is a generic measure of health status for children and adolescents aged 8-15 years. Originally, it has three levels of severity in each dimension (3L). This study aimed to develop a descriptive system of EQ-5D-Y with an increased number of severity levels and to test comprehensibility and feasibility.

    METHODS: The study was conducted in Germany, Spain, Sweden and the UK. In Phase 1, a review of existing instruments and focus group interviews were carried out to create a pool of possible labels for a modified severity classification. Participants aged 8-15 rated the severity of the identified labels in individual sorting and response scaling interviews. In Phase 2, preliminary 4L and 5L versions were constructed for further testing in cognitive interviews with healthy participants aged 8-15 years and children receiving treatment for a health condition.

    RESULTS: In Phase 1, a total of 233 labels was generated, ranging from 37 (UK) to 79 labels (Germany). Out of these, 7 to 16 possible labels for each dimension in the different languages were rated in 255 sorting and response scaling interviews. Labels covered an appropriate range of severity on the health continuum in all countries. In Phase 2, the 5L version was generally preferred (by 68-88% of the participants per country) over the 4L version.

    CONCLUSIONS: This multinational study has provided a version of the EQ-5D-Y with 5 severity levels in each dimension. This extended version (EQ-5D-Y-5L) requires testing its psychometric properties and its performance compared to that of the original EQ-5D-Y-3L.

  • 17.
    Nilsson, Jan
    et al.
    Department of Health Sciences, Faculty of Health, Science, and Technology, Karlstad University.
    Johansson, Eva
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Florin, Jan
    School of Health and Social Studies, Dalarna University.
    Leksell, Janeth
    School of Health and Social Studies, Dalarna University.
    Lepp, Margret
    Institute of Health and Care Science, University of Gothenburg.
    Lindholm, Christina
    Sophiahemmet University College.
    Nordström, Gun
    Department of Health Sciences, Faculty of Health, Science, and Technology, Karlstad University.
    Theander, Kersti
    Department of Health Sciences, Faculty of Health, Science, and Technology, Karlstad University.
    Wilde-Larsson, Bodil
    Department of Health Sciences, Faculty of Health, Science, and Technology, Karlstad University.
    Carlsson, Marianne
    Department of Public Health and Caring Sciences, Uppsala University.
    Gardulf, Ann
    Unit of Clinical Nursing Research, Immunotherapy and Immunology, Division of Clinical Immunology, Department of Laboratory Medicine, Karolinska Institutet, Karolinska University Hospital, Huddinge.
    Development and validation of a new tool measuring nurses self-reported professional competence: The nurse professional competence (NPC) Scale2014In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 34, no 4, p. 574-580Article in journal (Refereed)
    Abstract [en]

    Objectives

    To develop and validate a new tool intended for measuring self-reported professional competence among both nurse students prior to graduation and among practicing nurses. The new tool is based on formal competence requirements from the Swedish Board of Health and Welfare, which in turn are based on WHO guidelines.

    Design

    A methodological study including construction of a new scale and evaluation of its psychometric properties.

    Participants and settings

    1086 newly graduated nurse students from 11 universities/university colleges.

    Results

    The analyses resulted in a scale named the NPC (Nurse Professional Competence) Scale, consisting of 88 items and covering eight factors: “Nursing care”, “Value-based nursing care”, “Medical/technical care”, “Teaching/learning and support”, “Documentation and information technology”, “Legislation in nursing and safety planning”, “Leadership in and development of nursing care” and “Education and supervision of staff/students”. All factors achieved Cronbach's alpha values greater than 0.70. A second-order exploratory analysis resulted in two main themes: “Patient-related nursing” and “Nursing care organisation and development”. In addition, evidence of known-group validity for the NPC Scale was obtained.

    Conclusions

    The NPC Scale, which is based on national and international professional competence requirements for nurses, was comprehensively tested and showed satisfactory psychometrical properties. It can e.g. be used to evaluate the outcomes of nursing education programmes, to assess nurses' professional competences in relation to the needs in healthcare organisations, and to tailor introduction programmes for newly employed nurses.

  • 18.
    Ostblom, E
    et al.
    Department of Pediatrics, Sachs’ Children’s Hospital.
    Egmar, Ann-Charlotte
    Department of Occupational and Environmental Health, Stockholm County Council.
    Gardulf, A
    Department of Laboratory Medicine, Section of Clinical Immunology, Karolinska Institutet at Karolinska University Hospital, Huddinge, Stockholm.
    Lilja, G
    Department of Pediatrics, Sachs’ Children’s Hospital.
    Wickman, M
    Department of Pediatrics, Sachs’ Children’s Hospital.
    The impact of food hypersensitivity reported in 9-year-old children by their parents on health-related quality of life2008In: Allergy. European Journal of Allergy and Clinical Immunology, ISSN 0105-4538, E-ISSN 1398-9995, Vol. 63, no 2, p. 211-218Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: There are only a few studies on the impact of food hypersensitivity (FHS) in children on health-related quality of life (HRQL). The present study was designed to examine this impact in a population-based birth cohort (BAMSE).

    METHODS: A nested case-control study was performed within the cohort. The parents of 1378 nine-year-old children filled out a generic questionnaire with 13 subscales (Child Health Questionnaire Parental Form 28 - CHQ-PF28) supplemented with disease-specific questions concerning FHS. There were 212 children with report of FHS. Another 221 children with allergic diseases but not FHS were examined for comparison. Furthermore, the impact of pronounced symptoms of FHS and of increasing levels of food-specific IgE antibodies on HRQL was also analysed.

    RESULTS: The children with FHS exhibited significantly lower scores on the subscales physical functioning, role/social limitations - physical and general health in the generic instrument. Furthermore, children with food-related symptoms from the lower airways were scored lower on Self Esteem, Parental Impact - time and Family Cohesion. Sensitization per se did not alter these patterns, but high levels of food-specific IgE-antibodies affected mental health and general health negatively. A physician's diagnosis of food allergy did not affect any of the subscales negatively.

    CONCLUSIONS: Parents reported that FHS exerts a negative impact on the HRQL of 9-year-old children, in particular in children with symptoms from the lower airways or if the FHS is associated with high levels of food-specific IgE-antibodies. Healthcare-givers must put major effort into improving and maintaining the HRQL of these children.

  • 19.
    Ravens-Sieberer, Ulrike
    et al.
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Wille, Nora
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Badia, Xavier
    Health Economics and Outcomes Research, IMS Health, Doctor Ferran 25-27, 2, 08034, Barcelona, Spain.
    Bonsel, Gouke
    Institute of Health Policy and Management, and Department of Prenatal Medicine and Obstetrics (Location Woudenstein, L3-060), Erasmus Medical Centre, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands.
    Burström, Kristina
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Nobels väg 15a, 171 77, Stockholm.
    Cavrini, Gulia
    Department of Statistics, University of Bologna, Via delle Belle Arti 41, 40126, Bologna, Italy.
    Devlin, Nancy
    Office of Health Economics and Senior Associate, King’s Fund, 12 Whitehall, London, SW1A2DY, UK.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Gusi, Narcis
    Faculty of Sport Sciences, University of Extremadura, Avda Universidad, 10071, Caceres, Spain.
    Herdman, Michael
    CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain.
    Jelsma, Jennifer
    School of Health and Rehabilitation Sciences, Division of Physiotherapy, University of Cape Town, Anzio Road Observatory, 7925, Cape Town, South Africa.
    Kind, Paul
    Centre for Health Economics, Alcuin College, University of York, York, YO10 5DD, UK.
    Olivares, Pedro R.
    Faculty of Sport Sciences, University of Extremadura, Avda Universidad, 10071, Caceres, Spain.
    Scalone, Luciana
    Center of Pharmacoeconomics, University of Milan, Via Vanvitelli 32, 20129, Milan, Italy.
    Greiner, Wolfgang
    Department for Health Economics and Health Care Management, School of Public Health, University of Bielefeld, P.O. Box 10 01 31, 33501, Bielefeld, Germany.
    Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study2010In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 19, no 6, p. 887-897Article in journal (Refereed)
    Abstract [en]

    Purpose

    To examine the feasibility, reliability, and validity of the newly developed EQ-5D-Y.

    Methods

    The EQ-5D-Y was administered in population samples of children and adolescents in Germany, Italy, South Africa, Spain, and Sweden. Percentages of missing values and reported problems were calculated. Test–retest reliability was determined. Spearman’s rank correlation coefficients with other generic measures of HRQOL were calculated. Known groups’ validity was examined by comparing groups with a priori expected differences in HRQOL.

    Results

    Between 91 and 100% of the respondents provided valid scorings. Sweden had the lowest proportion of reported problems (1–24.9% across EQ-5D-Y dimensions), with the highest proportions in South Africa (2.8–47.3%) and Italy (4.3–39.0%). Percentages of agreement in test–retest reliability ranged between 69.8 and 99.7% in the EQ-5D-Y dimensions; Kappa coefficients were up to 0.67. Correlation coefficients with other measures of self-rated health indicated convergent validity (up to r = −0.56). Differences between groups classified according to presence of chronic conditions, self-rated overall health and psychological problems provided preliminary evidence of known groups’ validity.

    Conclusions

    Results provide preliminary evidence of the instrument’s feasibility, reliability and validity. Further study is required in clinical samples and for possible future applications in economic analyses.

  • 20.
    Uwe, Nicolay
    et al.
    Unit of Clinical Nursing Research and Research in Immunotherapy and Immunology, Section of Clinical Immunology at the Department of Laboratory Medicine, Karolinska Institutet at Karolinska University Hospital, Huddinge.
    Östblom, Eva
    Department of Clinical Research and Education, Södersjukhuset, Karolinska Institutet, Stockholm.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Nordström, Gun
    Department of Nursing, Faculty of Life and Social Sciences, Karlstad University, Karlstad.
    Gardulf, Ann
    Unit of Clinical Nursing Research and Research in Immunotherapy and Immunology, Section of Clinical Immunology at the Department of Laboratory Medicine, Karolinska Institutet at Karolinska University Hospital, Huddinge.
    Validation of a Disease-Specific Questionnaire for Measuring Parent-Reported Health-Related Quality of Life in Children with Allergies2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 4, p. 679-687Article in journal (Refereed)
    Abstract [en]

    Purpose: To evaluate the properties and suitability of a disease-specific questionnaire to assess parent-reported health-related quality of life (HRQL) of children and parents of children suffering from food hypersensitivity (FHS) or allergy to furred pets (AFP).

    Methods: The parents of 202 children with FHS and of 131 children with AFP filled in questionnaires comprising the CHQ-PF28 and the Food-Pet-Allergy in Children (FPAC) Questionnaire. Psychometric properties of the FPAC questionnaire were evaluated separately for FHS and AFP.

    Results: Analyses resulted in five proposed scales: Limitations of Family/Child Activities (I), Parents’ Distress (II), Child’s Emotions (III), Child in School (IV) and Family Conflicts (V). Convergent/discriminant validity for scales I, II and III of both questionnaires was high; for scale IV it was moderate. All five FHS and four AFP scales were able to distinguish significantly between children with and without clinical allergy symptoms (known-group validity). Internal consistency reliability was good for scales I, II and III, but poor for scale IV.

    Conclusion: Three valid scales were determined for both FHS and AFP (Limitations of Family/Child Activities, Parents’ Distress and Child’s Emotions) and can be used in clinical research.

  • 21.
    von Strauss, Eva
    et al.
    The Swedish Red Cross University College, Department of Public Health and Medicine.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Public Health and Medicine.
    Löfgren, Tommy
    The Swedish Red Cross University College.
    The Swedish Red Cross University College2015In: Journal of Humanitarian Studies, ISSN 2186-9774, Vol. 4, p. 50-61Article in journal (Other (popular science, discussion, etc.))
  • 22.
    Wickman, M
    et al.
    Department of Environmental Health and infectious Diseases Control, Karolinska Hospital, Stockholm.
    Emenius, G
    Department of Environmental Health and infectious Diseases Control, Karolinska Hospital, Stockholm.
    Egmar, Ann-Charlotte
    Department of Environmental Health and infectious Diseases Control, Karolinska Hospital, Stockholm.
    Axelsson, G
    Department of Environmental Health and infectious Diseases Control, Karolinska Hospital, Stockholm.
    Pershagen, G
    Department of Environmental Health and infectious Diseases Control, Karolinska Hospital, Stockholm.
    Reduced mite allergen levels in dwellings with mechanical exhaust and supply ventilation.1994In: Clinical and Experimental Allergy, ISSN 0954-7894, E-ISSN 1365-2222, Vol. 24, no 2, p. 109-114Article in journal (Refereed)
    Abstract [en]

    Seventy similar bungalows constructed between 1968 and 1970 in the same suburban area of Stockholm were investigated regarding the content of house dust mite allergen, absolute indoor humidity, type of ventilation and basement construction. Houses with mechanical exhaust and supply ventilation had an indoor humidity above 7 g/kg less often than houses without this type of ventilation (Odds ratio 0.1, 95% confidence interval 0.0-0.2). Furthermore, only five of the 24 houses with exhaust and supply ventilation contained mattress dust mite allergen concentrations exceeding the median value (98.5 ng/g) compared with 30 of 46 hours which did not have such ventilation (odds ratio = 0.1, C.I. 0.0-0.5). Houses with both natural ventilation and crawl space basement harboured significantly less mattress mite allergen than houses having the same type of ventilation, but with a concrete slab basement. In a cold temperature climate, type of building construction and ventilation seem to be important for the occurrence of house dust mite allergens in dwellings. Our results indicate that modern energy-efficient houses should be equipped with mechanical exhaust and supply ventilation to reduce indoor air humidity during the dry winter months and the risk of mite infestation.

  • 23.
    Wille, Nora
    et al.
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Badia, Xavier
    Health Economics & Outcomes Research, IMS Health, Doctor Ferran 25-27, 2, 08034, Barcelona, Spain.
    Bonsel, Gouke
    Department of Prenatal Medicine and Obstetrics (Location Woudenstein, L3-060), Erasmus Medical Centre, Institute of Health Policy & Management, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands.
    Burström, Kristina
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Nobels väg 15a, 171 77, Stockholm, Sweden.
    Cavrini, Gulia
    Department of Statistics, University of Bologna, Via delle Belle Arti 41, 40126, Bologna, Italy.
    Devlin, Nancy
    Office of Health Economics & Senior Associate, King’s Fund, 12 Whitehall, London, SW1A2DY, UK.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Greiner, Wolfgang
    Department for Health Economics and Health Care Management, University of Bielefeld, School of Public Health, P.O. Box 10 01 31, 33501, Bielefeld, Germany.
    Gusi, Narcis
    University of Extremadura, Faculty of Sport Sciences, Avda Universidad, 10071, Caceres, Spain.
    Herdman, Michael
    CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain.
    Jelsma, Jennifer
    Division of Physiotherapy, University of Cape Town, School of Health and Rehabilitation Sciences, Anzio Road Observatory, Cape Town, 7925, South Africa.
    Kind, Paul
    Centre for Health Economics, Alcuin College, University of York, York, YO10 5DD, UK.
    Scalone, Luciana
    Department of Clinical Medicine and Prevention, Research Centre On Public Health, University of Milano – Bicocca, Villa Serena, Via Pergolesi 33, 20052, Monza, Italy.
    Ravens-Sieberer, Ulrike
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Development of the EQ-5D-Y: a child-friendly version of the EQ-5D2010In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 19, no 6, p. 875-886Article in journal (Refereed)
    Abstract [en]

    Purpose

    To develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y.

    Methods

    An international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children’s and adolescents’ understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa.

    Results

    The content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems.

    Conclusions

    The newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.

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