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Annotated patient-voice sources

Last curated: 2026-10-25. Original organization service descriptions were accessed 2026-08-30; later source checks are dated individually.

Public organizations

  • NRAS home/about pages — https://nras.org.uk/ and https://nras.org.uk/about-the-charity/ — UK RA/JIA-specific charity; verifies helpline, education, self-management, work support, advocacy and patient-led mission. Strong service detail; not a representative research sample.
  • Arthritis Foundation RA education — https://www.arthritis.org/rheumatoid-arthritis-patient-education — US RA education, helpline, community and practical resources. Public stories are illustrative, not prevalence evidence.
  • Arthritis Society Canada RA page — https://arthritis.ca/about-arthritis/arthritis-types/rheumatoid-arthritis/ — Canadian education and support framing; broader arthritis organization.
  • Arthritis Australia — https://arthritisaustralia.org.au/ — national charity with infoline, support and advocacy; broader arthritis scope.
  • MyRA — https://www.myra.org.au/ — Arthritis Australia’s RA-specific digital support program; useful for treatment, team, daily-life and pain themes.
  • Arthritis Ireland RA page — https://www.arthritisireland.ie/conditions/rheumatoid-arthritis-ra/ — RA education, helpline and COMPASS shared-decision resources.
  • EULAR PARE community — https://www.eular.org/the-eular-pare-community — European patient-organization network and research/policy participation.
  • EULAR PARE organization directory — https://www.eular.org/eular-pare-organisations — verifies national member organizations across Europe.
  • Arthritis Foundation of South Africa — https://arthritis.org.za/ — patient-oriented national nonprofit offering a helpline, education, support and advocacy; broader arthritis scope.

Public material checked 2026-10-25

  • Deutsche Rheuma-Liga, S3 RA medication guideline patient version — https://www.rheuma-liga.de/fileadmin/public/main_domain/Dokumente/Unser_Einsatz/s3_leitlinie_medikamente_ra_patientenversion_Deutsche_Rheuma-Liga.pdf — public German-language patient translation retrieved through the organization's guideline page. Explains shared decisions and treatment options; its patient-authored additions address daily-life priorities. A useful language/access resource; release date was not established, so this is a newly catalogued source, not a claimed new publication.
  • Arthritis Foundation, “One in Four U.S. Adults Has Arthritis. This World Arthritis Day, the Arthritis Foundation Is Making That Number Personal” — https://www.arthritis.org/news/press-releases-and-statements/making-world-arthritis-day-personal — dated 2026-10-05, accessed 2026-10-25. Awareness campaign emphasizes everyday impact, support and community across arthritis types. Its prevalence statement concerns arthritis overall and is not an RA burden estimate or representative patient-experience study.

Peer-reviewed sources

  • van Tuyl LHD, et al. Patient-reported outcomes in rheumatoid arthritis. Rheum Dis Clin North Am. 2016. PMID 27133486 — measurement history and domains.
  • Taylor PC, et al. Systematic literature review of residual symptoms and unmet need in RA. Arthritis Care Res. 2021. PMID 32619340 — 55 reports; symptoms remain despite targets.
  • Katz P. Fatigue in rheumatoid arthritis. Curr Rheumatol Rep. 2017. PMID 28386762 — multidimensional fatigue synthesis.
  • Katz P. Management of fatigue in rheumatoid arthritis. RMD Open. 2020. PMID 32385141 — severe-fatigue estimate and management domains.
  • Michaud K, et al. Pain, fatigue and work productivity in RA-BEAM. Rheumatol Ther. 2019. PMID 31228100 — trial-based work-productivity analysis.

Coverage limits

  • No private community content was accessed.
  • Public organization users are self-selected and digitally connected.
  • The web source set overrepresents the UK, US, Canada, Australia, Ireland and Europe; one South African national source does not represent the continent.
  • English-language search underrepresents non-English experiences even when organizations exist.
  • Organization service descriptions can change; they were verified only on the access date.
  • Themes describe convergence across sources and must not be converted into percentages.