ArticleHealth and quality of life outcomes2018
How patient participation was used to develop a questionnaire that is fit for purpose for assessing quality of life in severe asthma.
Article in Health and quality of life outcomes, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
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Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 26 citations in OpenAlex.
- Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs).The patient · 2023Pooled it
- Development of Core Outcome Measures sets for paediatric and adult Severe Asthma (COMSA).The European respiratory journal · 2023Pooled it
- Validating a Patient-Reported Outcome Measure to Improve Emergency Department Asthma Care: Protocol for an Observational Study.JMIR research protocols · 2025Article
- Definitions of non-response and response to biological therapy for severe asthma: a systematic review.ERJ open research · 2023Review
- Development and linguistic validation of the Korean version of the Severe Asthma Questionnaire.Journal of thoracic disease · 2023Article
- What bothers severe asthma patients most? A paired patient-clinician study across seven European countries.ERJ open research · 2023Article
- "Life-changing": the experience of super-responders to biologics in severe asthma.BMC pulmonary medicine · 2022Article
- Vitamin D ameliorates asthma-induced lung injury by regulating HIF-1α/Notch1 signaling during autophagy.Food science & nutrition · 2022Article
- The asthma evidence base: a call for core outcomes in interventional trials.The Journal of asthma : official journal of the Association for the Care of Asthma · 2021Review
- The Severe Asthma Questionnaire: sensitivity to change and minimal clinically important difference.The European respiratory journal · 2021Article
- Validation of subscales of the Severe Asthma Questionnaire (SAQ) using exploratory factor analysis (EFA).Health and quality of life outcomes · 2020Article
- "DLQI Seems to be 'Action', and Skindex-29 Seems to be 'Emotion'": Qualitative Study of the Perceptions of Patients with Psoriasis or Eczema on Two Common Dermatology-specific Quality of Life Measures.Acta dermato-venereologica · 2020Article
- Elevated expression of microRNA-378 in children with asthma aggravates airway remodeling by promoting the proliferation and apoptosis resistance of airway smooth muscle cells.Experimental and therapeutic medicine · 2019Article
- Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations.The patient · 2018Article
- The construction and validation of the Severe Asthma Questionnaire.The European respiratory journal · 2018Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPrevious research shows that existing asthma quality of life questionnaires fail to measure the burden of oral corticosteroids that can be used to treat severe asthma, and are therefore not fit for purpose for severe asthma according to the USA's Federal Drug Authority's (FDA) criteria for content validity. Patient input and documentation of that input is key to achieving content validity according to FDA guidelines. This paper describes the process of constructing a new questionnaire to measure the burden of asthma symptoms and burden of treatment in severe asthma, using criteria specified by the FDA.
methodsA draft severe asthma questionnaire (SAQ) was constructed using qualitative input from severe asthma patients who took part in an earlier study. The aim of this study was to improve that draft questionnaire using a further group of patients. In four iterative focus groups, 16 people with severe asthma completed the draft questionnaire, discussed the wording and structure and suggested changes that were incorporated into the final version.
resultsThe original intention to ask patients to identify whether problems were caused by asthma symptoms or side effects of medication was abandoned as the attribution of cause was found to be difficult and inconsistent. The recall period of 2 weeks was acceptable but fails to reflect the patients' desire to express the variability of severe asthma. Patients suggested improvements to the wording of the draft questionnaire, including splitting some items in two, combining two items in one, and changes to some of the words in individual items and the response scale.
conclusionsThe final version of the questionnaire was substantially different from one constructed using only qualitative reports from patients about the quality of life deficits of severe asthma. Patients make a valuable contribution to the questionnaire if they are asked to comment and improve an initial draft and where patients are treated as partners in the process of questionnaire construction, rather than only as a source of information to experts who construct the questionnaire.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.