Development of patient-centred outcomes in asthma and allergy

Abstract

Asthma and allergies are associated with significantly reduced quality of life and both morbidity and mortality. They affect patients from childhood into adulthood. Patients often miss school, college or work. To improve outcomes for these patients we need to better understand what is important for them. This includes patient-oriented guidance, use of personalised medicines and being able to assess response to medicines using patient-selected outcomes.
This thesis focuses on developing patient-centred outcomes for patients with asthma and/or allergies and has four main aims. First, to understand perceptions of adolescents and young adults with allergies and/or asthma and their parents about transition care to improve outcomes. Second, to generate patient-centred core outcome measures sets for paediatric and adult severe asthma. Third, to systematically review and appraise methodologically developed, defined, and evidenced definitions of response to biological therapy as outcomes for severe asthma. Forth, to develop composite response tools as standardised outcomes with input of patients to assess response to biological therapy for severe asthma.
The results achieved with patient input reported in this thesis include 1) viewsof adolescents and young adults with asthma and allergies and their parents on how to improve draft recommendations about transition; 2) development of core outcome measures for paediatric and adult severe asthma through the multinational multistakeholder consensus; 3) current definitions of response to biological therapies that lack of a patient-centred composite outcome measure of response, and 4) externally validated composite definitions of response to biological therapy for paediatric and adult severe asthma.
This thesis concludes that involvement of patients in guideline development is crucial to make recommendations more patient-centred thus improve long-term outcomes in adolescents and young adults with asthma and allergies. Novel core outcome measures for severe asthma should lead to consistency in reporting and standardised comparison of patient-oriented outcomes in trials to guide policy-making and clinical care. Methodologically developed patient-centred composite scores should be helpful in holistic understanding of response to biologics in severe asthma but require further validation. Taken together, this thesis is a step towards in achieving standardised and patient-oriented outcomes is asthma and allergy.

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Identifiers

ORCID for Ekaterina Khaleva: orcid.org/0000-0002-2220-7745

ORCID for Graham Roberts: orcid.org/0000-0003-2252-1248

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