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Annotated patient-voice sources

Last curated: 2026-08-30

Peer-reviewed

  • Woo S, et al. Development and preliminary psychometric evaluation of the COPD-related Stigma Scale. Heart Lung. 2023. PMID 37084465 — early measurement study; requires broader validation.
  • Farquhar M, et al. Carers and breathlessness. Curr Opin Support Palliat Care. 2017. PMID 28617682 — review centered on caregiver experience and support.
  • Maddocks M, et al. Palliative care and management of troublesome symptoms in COPD. Lancet. 2017. PMID 28872031 — symptom and palliative-care synthesis.
  • Afroz N, et al. Patient-reported outcomes in COPD clinical trials. Int J Chron Obstruct Pulmon Dis. 2020. PMID 32801678 — documents outcome-selection gaps.
  • Taichman DB, et al. Making long-term oxygen therapy less burdensome. N Engl J Med. 2024. PMID 39254439 — editorial framing of device/service burden.

Public organizational sources

  • COPD Foundation — education/support framework and support contacts. https://www.copdfoundation.org/ — accessed 2026-08-30. US-based, broad online reach; curated advocacy content.
  • European Lung Foundation — patient-led multilingual information and partnership. https://europeanlung.org/en/ — indexed live metadata checked 2026-08-30 after direct retrieval returned HTTP 403. Pan-European, not COPD-only.
  • Lung Foundation Australia — helpline, support, stories, research and advocacy. https://lungfoundation.com.au/ — accessed 2026-08-30. National organization; public stories are selected, not sampled.
  • Canadian Lung Association — COPD resources, action plan, inhaler education and BreatheSTRONG. https://www.lung.ca/lung-diseases/copd/ — accessed 2026-08-30. Notes educational sponsorship on COPD pages.

Coverage limits

No private-person content was collected. Current coverage lacks direct sources in most of Africa, Asia, Latin America and the Middle East; non-English patient organizations; occupational groups; Indigenous-led COPD sources; and offline communities. Future expansion should prioritize locally governed qualitative research rather than translating high-income-country themes without validation.