Annotated sources — asthma patient voice¶
Last curated: 2026-10-22; original audit 2026-08-30, with additions on 2026-10-15 and 2026-10-22. Sources retain their dated verification history; the new organizational source was retrieved live on 2026-10-22. Published-research identifiers originate from the live PubMed queries recorded in the condition log.
Official organization sources¶
| Publisher / page | URL | Use in this layer |
|---|---|---|
| Asthma Australia — QUM in CAD: lessons from lived experience | https://asthma.org.au/health-professionals/asthma-digest/qum-in-cad-lessons-from-lived-experience/ | Consumer co-design; validation, communication, health literacy and partnership |
| Asthma Australia — Faces of Asthma | https://asthma.org.au/get-involved/asthma-champion-program/faces-of-asthma/ | Public story and advocacy programme; not treated as representative sampling |
| Asthma Australia — research areas | https://asthma.org.au/research/our-research-areas/ | Lived-experience principle and community-defined priorities |
| Asthma Australia — Tasmanian survey | https://asthma.org.au/about-us/media/survey-tasmanians-with-asthma-living-unnecessarily-restricted-lives/ | Illustrates adaptation to restriction; sample and self-report caveats retained |
| Asthma + Lung UK — Your stories | https://www.asthmaandlung.org.uk/blog/your-stories | Public hub spanning attacks, work, school, pollution, biologics and daily life |
| Asthma + Lung UK — severe-asthma lived-experience report | https://www.asthmaandlung.org.uk/sites/default/files/2023-03/pol001_lived_experience_report_final.pdf | Fear, isolation and service needs in severe disease |
| Asthma Canada — Living with asthma | https://asthma.ca/get-help/living-with-asthma/ | Educator helpline, action plans, triggers and practical self-management |
| Asthma Canada — Self-advocacy resources | https://asthma.ca/what-we-do/advocacy/self-advocacy-resources/ | Patient-developed rights, shared goals, questions and workplace/family communication |
| Asthma Canada — Community stories | https://asthma.ca/community-stories/ | Public story hub; used for range, not prevalence |
| Asthma Canada — Living with severe asthma | https://asthma.ca/get-help/severe-asthma/living-with-severe-asthma/ | Severe-asthma journey, social/financial burden and support routes |
| Allergy & Asthma Network — Advocacy and public policy | https://advocacy.allergyasthmanetwork.org/ | Access, insurance, clean air, school and federal advocacy |
| Allergy & Asthma Network — PALI | https://advocacy.allergyasthmanetwork.org/become-an-advocate/pali/ | Patient-advocate training and participation infrastructure |
| GAAPP — Support and advice for asthma | https://gaapp.org/define-your-asthma/support-and-advice-for-asthma | Multilingual, 63-country campaign; industry support disclosed |
| AAFA — 2026 Asthma Capitals® report announcement (1 September 2026; accessed 2026-10-15) | https://aafa.org/report-aafa-names-2026-asthma-capitals-highlights-risk-factors-that-increase-asthma-related-er-visits-and-deaths/ | Ranks the 100 most populous contiguous-US metropolitan areas on estimated prevalence, asthma ED visits and asthma deaths. Frames poverty, air quality, respiratory-infection exposure, tobacco, pollen, insurance and specialist access as drivers, and a September ED surge as "Asthma Peak Season". An advocacy ranking, not a peer-reviewed estimate; its methods were not audited |
| Asthma + Lung UK — “Our advice on finding trusted health advice online” (17 September 2026; accessed 2026-10-22) | https://www.asthmaandlung.org.uk/blog/advice-support/our-advice-finding-trusted-health-advice-online | Public education on checking authorship, review dates, references, balanced benefits/risks and AI-generated health information. Organizational advice, not evidence that a particular misinformation intervention improves asthma outcomes; no individual patient details retained |
Published research: experience and self-management¶
| PMID | Contribution |
|---|---|
| 31777564 | Living well with severe asthma; uncertainty and adaptation |
| 39773014 | Patient understanding and self-management of asthma attacks |
| 36414789 | Patient experience of moderate asthma attacks in two countries |
| 30053965 | Synthesis of treatment perceptions influencing adherence |
| 32210541 | Targeted qualitative review of medication adherence perspectives |
| 34902272 | Young adults' lived experience of medication adherence |
| 30461359 | Young people, asthma stigma and chronic-illness identity |
| 28302126 | Meta-review of supported self-management implementation |
| 28972652 | Shared decision-making systematic review |
| 39184910 | Qualitative path to severe-asthma diagnosis |
| 31090652 | Systematic review of parent and carer experience |
| 35967097 | Systematic review of parental decisions during childhood attacks |
| 33758515 | Patient experience of severe-asthma add-on pharmacotherapy |
| 33577946 | Patient-selected treatment goals in severe asthma |
| 36239214 | Youth experience of asthma self-management education |
| 30287588 | Post-hospital barriers and facilitators across carers, clinicians and schools |
| 37802253 | Black emerging adults' experience of uncontrolled asthma |
| 36220057 | Review of racial inequities in asthma care |
| 37455665 | Population-level social determinants and paediatric utilization |
| 40688041 | Income, employment and asthma outcomes meta-analysis |
| 38613765 | Qualitative metasynthesis of shared decision-making experience |
Additional patient-experience evidence mapped in the wiki¶
The wiki synthesis also uses live-verified PMIDs 32801203, 34504105, 39773014, 37802253, 36414789, 34902272, 28111991, 39184910, 35967097, 37643678, 33758515, 30461359, 38613765, 29794132, 33577946, 36316999, 40688041, 36220057, 37455665, 40799034 and 32816816. Full citations and page provenance are in ../BIBLIOGRAPHY.md.
Coverage limits¶
- Discovery was conducted in English and strongly favoured English-language organizations and indexed research.
- No private or closed community was accessed; public comment threads were not sampled.
- Organization story hubs are curated and subject to selection and survivorship bias.
- Organization surveys may use convenience samples; their numbers are not generalized beyond the described respondents.
- The organization register is not exhaustive. Regional under-representation is a property of this search, not evidence of absent advocacy.
- Industry-supported advocacy material is retained only with the funding relationship stated and is not used as efficacy evidence.