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Patient voice — thoracic aortic aneurysm

This directory is the patient-experience layer of the TAA knowledge base: what living with thoracic aortic aneurysm and dissection is actually like, as reported by patients themselves — through patient organizations, published qualitative research, news features, and video testimony. It exists because the clinical literature optimizes for survival and reintervention rates while patients also report misdiagnosis trauma, surveillance anxiety, activity-restriction identity loss, and information deserts — outcomes that almost no TAA trial measures (Shan 2023, PMID 37451607).

Files in this layer

File Contents
organizations.md Directory of TAA/aortopathy patient organizations and campaigns worldwide — what each offers patients and how each participates in research. Every listed organization was verified during the writing session (see Methodology).
themes.md Thematic synthesis of patient-reported experience. Every theme is supported by ≥2 independent sources (published qualitative studies with PMIDs, fetched organization pages, news features, video listings).
sources.md Annotated source list: (a) organization story/testimonial pages fetched, (b) news/feature articles fetched, (c) video content identified via search, (d) published qualitative and patient-experience research with PMIDs. Includes an explicit coverage limits note.

The synthesis of this layer into the wiki lives at ../../wiki/patient-experience-and-advocacy.md.

Methodology (how sources were found — session of 2026-08-27)

  1. Published research (PubMed, live queries). Searches combining thoracic aortic aneurysm / aortic dissection with: qualitative, patient experience, lived experience, illness perception, psychological, PTSD / posttraumatic, quality of life, patient-reported outcome, misdiagnosis / delayed diagnosis, awareness campaign, shared decision / decision-making, plus author-tracking of known groups (Chaddha/Eagle IRAD survivorship work; Velvin/Bathen TRS Norway; the Semin Vasc Surg 2022 Aortic Dissection Collaborative special issue). Every PMID cited anywhere in this layer was returned by a PubMed tool call in the writing session.
  2. Organizations. Started from a seed list (Marfan Foundation, Marfan Trust, Aortic Dissection Awareness UK & Ireland, THINK AORTA, John Ritter Foundation, Aortic Hope, GADA Canada, Loeys-Dietz Syndrome Foundation, The VEDS Movement, Turner Syndrome Society, VASCERN), then expanded by region (Australia, Japan, Germany, Netherlands, France) via web search. Each organization's own site (or an authoritative page about it) was fetched directly; organizations that could not be fetched are listed separately as unverified rather than silently included.
  3. Patient stories and news features. Organization story-hub pages (Aortic Dissection Awareness UK & Ireland patient stories; Aortic Hope Survivor Series; Marfan Foundation community blog) were fetched and summarized in aggregate only. News/feature items (e.g., British Heart Foundation Heart Matters stories) were fetched individually.
  4. Video. YouTube content was identified via web search (site:youtube.com + aortic dissection survivor / TAA patient story / Marfan story / THINK AORTA). Videos are cited from the search listings actually seen (title, channel, URL); transcripts and comment threads were not retrieved — see the coverage-limits note in sources.md.

Ethics rules applied (from CONVENTIONS.md §3)

  1. Public sources only. Nothing from closed groups, private forums, or any logged-in context. (Several organizations run private Facebook groups; their existence is noted, their contents were never accessed.)
  2. Paraphrase, don't harvest. Patient experiences are paraphrased; direct quotes are ≤15 words and attributed to the publishing source.
  3. No names or identifying details of private individuals. Story pages and videos are summarized in aggregate ("multiple patients describe…"). Where a publisher's own page or video title contains a private individual's name, the name is omitted or elided in our citation; the URL preserves verifiability. Organization spokespeople and public figures (e.g., foundation founders, John Ritter, Jonathan Larson, Roger Black) may be named.
  4. No cross-source dossiers. No individual's story is compiled across sources; each source is used only for the themes it itself reports.
  5. Aggregate reporting. Themes require ≥2 independent sources; single-story observations are not promoted to themes.

How to update this layer

  • Re-verify before extending. Any new organization gets a live fetch of its site (or an authoritative third-party page) before it enters organizations.md; record the access date. Dead links get marked, not deleted, until re-checked once more.
  • New qualitative papers enter sources.md §(d) with PMIDs from a live PubMed query, and themes.md only if they add or strengthen a theme (≥2-source rule stands).
  • New story/video material: summarize in aggregate, apply the ethics rules above, and prefer hub pages over individual named stories for citation.
  • Propagate upward: changes here that alter conclusions must be reflected in wiki/patient-experience-and-advocacy.md, and the session logged in the condition LOG.md per repo protocol.
  • Periodic sweep cue (from repo CLAUDE.md): during literature sweeps, check for new/renamed campaigns (awareness campaigns rebrand often), new PCORI/NIHR patient-involvement programmes, and whether any organization's registry or research programme has produced publications.