Subproject 2 - Health-related quality of life in children and adolescents with allergic diseases and quality of life of their parents
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Allergic diseases such as atopic dermatitis (AD), allergic rhinitis (AR), asthma (A) and food allergy (FA) notably affect health-related quality of life (HRQoL) of children and adolescents who suffer from these diseases and the parents' quality of life (QoL). Currently, little is known about the subjectively perceived impairments. Thus, the burden of allergic disease in young patients and their parents needs to be examined. Consequently, this sub-project has a bearing on clinical practice, as it is instrumental in providing information on patient-relevant aspects for the future treatment of allergic diseases. Besides, the results can help to develop detailed and concrete health promoting programs for different target groups, which focus on the patients' needs.
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Primary goal of this sub-project is to evaluate the influence of different allergic diseases on HRQoL of young patients and QoL of their parents. To achieve this, we will analyse and compare HRQoL of young patients as well as their parents QoL across AD, AR, A and FA, across different disease stages and progression and across various age groups in childhood.
Secondly, also the HRQoL of healthy children and their parents' QoL is investigated in comparison.We hypothesize,
- that the impairment of HRQoL of young patients who suffer from allergic diseases and the HRQoL-dimensions affected accordingly depend on the kind of disease but also on the disease stage and progression,
- that socio-demographic factors, especially the patient's age and gender but also comorbidities influence HRQoL,
- that the type of allergy, disease stage and progression, but also the children's age and socio-demographic factors of the parents influence parents' QoL differently,
- that young allergic patients and healthy children differ in their HRQoL and
- that parents of allergic patients and parents of healthy children differ in their QoL.
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Phase 1: HRQoL instruments needed in Phase 2 will be prepared (development as well as translation/adaption) and qualitatively pre-tested in the target population.
Phase 2: The online-based longitudinal study uses generic (PedsQLTM or EQ-5D-Y, application depending on age) and disease-specific questionnaires (FAQLQ and/or PADQLQ and/or IDQOL/CDLQI, application depending on allergy) to measure HRQoL of young allergic patients at multiple times, whereas for the healthy control group solely the generic questionnaire is used. Whether a proxy-report or a self-report is applied for the HRQoL measurement depends on the age of the child.
Moreover, data about parents' QoL of are collected by using the ULQIE. Sociodemographic data and further information, such as health status, comorbidities, are also collected.
The potential participants will be recruited through the pre-existing CHAMP cohorts.
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The research team of sub-project 2 consists of health scientists and health economists. In addition to the principal investigator, the team members include research associates who are specialized in HRQoL research among children and adolescents.
Prof. Dr. Wolfgang Greiner
Simone Kreimeier
Principal Investigator Prof. Dr. rer. pol. Wolfgang GreinerProf. Dr. Wolfgang Greiner has held the chair of “Health Economics and Health Management" at Bielefeld University since April 2005. His research focus lies in the field of
- QoL research,
- evaluation of health services,
- health technology assessment and
- disease management.