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Patient voice — method and ethics

Last curated: 2026-08-30

Purpose

This layer records how lumbar spinal stenosis and degenerative cervical myelopathy affect mobility, hands, independence, work, caregiving, information needs, waiting and recovery. It complements clinical outcomes; it does not treat public testimony as efficacy evidence.

Method

  1. PubMed E-utilities was searched live for lumbar spinal stenosis qualitative, degenerative cervical myelopathy qualitative, patient perspective, information needs, waiting, falls, core outcomes and related terms.
  2. Qualitative, mixed-methods and patient-partnered studies were prioritized. Each theme in themes.md requires at least two independent sources; adjacent quantitative sources are labeled as such.
  3. Organization sites were fetched directly on 2026-08-30 and are cataloged in organizations.md. Organizations specific to DCM or spine health are separated from broader pain/disability organizations.
  4. Sources are annotated in sources.md with population and contribution so that online surveys are not mistaken for representative epidemiology.
  5. No names or identifying details of private individuals are recorded. Public patient stories are used only to identify aggregate research questions; this build contains no verbatim patient quotation.

Ethics rules

  • Public sources only.
  • Paraphrase; any future quote must be ≤15 words and attributed.
  • Never record names, handles, locations or other identifiers of private people.
  • Do not infer prevalence from support-group or online-community samples.
  • Distinguish traumatic spinal-cord-injury organizations from degenerative myelopathy; overlap is in accessibility and disability advocacy, not pathophysiology.
  • Treat commercial provider testimonials as marketing and exclude them from thematic synthesis.
  • Record missing regions and languages rather than generalizing from English-language sources.

Coverage achieved

  • Lumbar: waiting for surgery, prehabilitation/recovery concerns, mobility and walking measurement.
  • Cervical: patient-derived outcome domains, information needs, repeat surgery, falls and quality of life.
  • Organizations: eight live-fetched sites across the United States, United Kingdom, Europe, Australia, southern Africa and Canada/global work.

Coverage limitations

The qualitative evidence is small and heavily weighted toward surgical pathways, English-language publications and online DCM communities. An updated PubMed search on 2026-08-30 retrieved no condition-specific qualitative study from Africa, Latin America, the Middle East or South Asia and no dedicated caregiver study. One small postoperative cohort addressed return to work (Truszczyńska 2013, PMID 23817866), so employment is documented but remains thin; transport and financial-toxicity evidence remain gaps. Lumbar research underrepresents people who remain in primary care and never reach surgery, and DCM online surveys may overrepresent people with persistent symptoms or strong community engagement.