schema: eds-research/corpus/v1
category:
  id: management
  label: Management and clinical care
  description: What the clinical literature supports — physiotherapy mainstay, pain management, anesthetic and surgical cautions — with evidence tiers made explicit.
  order: 50
records:
  - id: mgmt-pt-mainstay
    kind: practice
    title: Physiotherapy and exercise are the management mainstay
    summary: "Clinical guidance positions individualized physical therapy — strengthening, proprioceptive work, pacing — as the primary management for hEDS/HSD. The honest limitation: the trial record is small and heterogeneous; the recommendation rests on expert consensus and cohort experience more than large trials."
    subtypes: [heds, hsd]
    status: established
    criteria_era: international-2017
    practice_kind: physical-therapy
    evidence:
      - stratum: clinical
        tier: expert-review
        source_ids: [source-1ad3f0edd57e0fab1524]
      - stratum: clinical
        tier: consensus-statement
        source_ids: [source-328501b217c2b3d0d2d2]
    reviewed_at: "2026-09-16"
    reassess_by: "2027-03-16"
    risk:
      level: caution
      note: Generic exercise prescriptions can aggravate unstable joints; EDS-literate, individualized programming matters.
    tags: [physical-therapy]
  - id: mgmt-lidocaine-resistance
    kind: practice
    title: Local anesthetic resistance — the index's reference convergence
    summary: Patients reported local-anesthetic failure for decades. Hakim and Grahame's 2005 survey found 58% of hypermobile patients reported inadequate anesthesia vs 21% of controls; a 2019 survey (n=988) found 88% vs 33%; in 2025 a randomized cross-over trial (n=135) confirmed shorter lidocaine duration in EDS patients. The arc — forum reports, structured survey, randomized confirmation — is the model this index exists to document.
    date: "2025"
    date_precision: year
    subtypes: [all-eds]
    status: established
    criteria_era: international-2017
    practice_kind: procedural
    evidence:
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
        note: Dental-procedure anesthetic failure is among the oldest recurring community reports.
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-aef7c864eb540644a26f, source-27684d4afee8b83b9d25]
      - stratum: clinical
        tier: randomized-trial
        source_ids: [source-d91980e8e90850a3f3b9]
      - stratum: registry
        tier: trial-registration
        source_ids: [source-50e9fc30eba2907905ba]
    corroboration: convergent
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    risk:
      level: caution
      note: Procedure planning should anticipate reduced local-anesthetic duration; flag the diagnosis before dental and minor surgical work.
    tags: [anesthesia, dental, convergence]
  - id: mgmt-pain-management-2017
    kind: practice
    title: Pain management guidance formalized in 2017
    summary: "Chopra et al.'s 2017 management paper remains the reference for EDS pain care — multimodal analgesia, physiotherapy, psychological support, and caution about long-term opioids. Evidence tiers here are low: mostly expert consensus and small series."
    date: "2017-03"
    date_precision: month
    subtypes: [all-eds]
    status: probable
    criteria_era: international-2017
    practice_kind: medication
    evidence:
      - stratum: clinical
        tier: expert-review
        source_ids: [source-328501b217c2b3d0d2d2]
    reviewed_at: "2026-09-16"
    reassess_by: "2027-03-16"
    tags: [pain]
  - id: mgmt-surgical-caution
    kind: practice
    title: Surgical and tissue-handling caution
    summary: Tissue fragility, wound-healing complications, and — in vEDS — arterial rupture risk make surgery a deliberate decision. The 2017 orthopaedic guidance favors conservative management; the record is cautious rather than prohibitionist.
    subtypes: [all-eds]
    status: probable
    criteria_era: international-2017
    practice_kind: procedural
    evidence:
      - stratum: clinical
        tier: expert-review
        source_ids: [source-1ad3f0edd57e0fab1524]
      - stratum: clinical
        tier: expert-review
        source_ids: [source-be972ed50decef4cbf0b]
    reviewed_at: "2026-09-16"
    risk:
      level: significant
      note: In vEDS, arterial and organ rupture make surgical and anesthetic decisions materially different from other types; subtype scoping is not optional here.
    tags: [surgery, tissue-fragility]
  - id: mgmt-psych-support
    kind: practice
    title: Psychological support and trauma-informed care
    summary: The diagnostic-odyssey literature documents medical gaslighting and post-traumatic stress in hEDS patients; management guidance includes psychological support. The 2025 BMJ phenomenological study urges trauma-informed care at the point of diagnosis.
    date: "2025"
    date_precision: year
    subtypes: [heds, hsd]
    status: probable
    criteria_era: international-2017
    practice_kind: psychological
    evidence:
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-21337422dde3976b584c]
      - stratum: clinical
        tier: systematic-review
        source_ids: [source-fa671c0df94cd9c20ecb]
    reviewed_at: "2026-09-16"
    tags: [mental-health, trauma-informed]