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Annotated patient-voice sources

Last curated: 2026-08-30

Published qualitative and patient-partnered studies

Source Population / method Contribution Limitation
Knutsson et al. 2022, PMID 35106129 People waiting for lumbar-stenosis surgery; qualitative study Suffering, uncertainty and coping while waiting Surgical pathway; local health system
Lam et al. 2022, PMID 36545515 LSS patients discussing prehabilitation and recovery; qualitative interviews Preparation, recovery concerns and program preferences People already considering surgery
Sangeorzan et al. 2023, PMID 37205664 20 people with DCM; semistructured interviews Variation in information provision and broad information needs Small English-language sample
Davies et al. 2022, PMID 33203262 Focus group of 8 plus online survey of 224 people with DCM 68 patient-derived consequences for core-outcome work Online-community selection
Gharooni et al. 2020, PMID 32360164 DCM patient-perspective survey Repeat surgery and multilevel-treatment experience Self-report and online recruitment
Hirayama et al. 2023, PMID 34791981 Systematic review of DCM quality-of-life determinants Connects clinical impairment with broader QOL Heterogeneous instruments
Peterson et al. 2021, PMID 33965775 12 people with LSS; semistructured interviews using the Health Belief Model Treatment decisions, perceived threat, control and education Small sample; six had previous surgery
Truszczyńska et al. 2013, PMID 23817866 58 postoperative spinal-stenosis patients; individual interviews at 3–8 months Return to work, attitudes to employment and quality of life Selected surgical cohort; older labor-market context

Quantitative sources used to contextualize experience

Source Population / method Patient-voice relevance
Schneider et al. 2019, PMID 30646197 259-person three-arm LSS RCT Walking and symptom responders diverged
Minetama et al. 2019, PMID 30986577 86-person supervised-PT versus home-exercise RCT Includes walking and daily steps
Aaen et al. 2022, PMID 34797405 437 NORDSTEN surgical candidates Severe MRI grades poorly explained disability/pain
Inose et al. 2021, PMID 33496544 135-person prospective DCM cohort Falls and grip strength
Kimura et al. 2020, PMID 31809466 132 returned fall diaries Falls and fall-related motor deterioration
Lurie et al. 2015, PMID 25569524 SPORT at 8 years Crossover, attrition and treatment trajectory

Public organization sources

  • Myelopathy.org — DCM-specific charity and community: https://myelopathy.org/ (accessed 2026-08-30).
  • National Spine Health Foundation — patient-centered spine education and advocacy: https://spinehealth.org/ (accessed 2026-08-30).
  • BackCare — UK back/neck-pain charity: https://backcare.org.uk/ (accessed 2026-08-30).
  • World Spine Care — multinational access mission: https://www.worldspinecare.org/about/ (accessed 2026-08-30).
  • EUROSPINE Patient Line — professional-society patient information: https://www.eurospine.org/patients/ (accessed 2026-08-30).
  • Painaustralia — consumer pain advocacy: https://www.painaustralia.org.au/ (accessed 2026-08-30).
  • QuadPara Association of South Africa — disability and SCI advocacy: https://qasa.co.za/ (accessed 2026-08-30).
  • Spinal Cord Injury Canada — federated peer and disability support: https://sci-can.ca/network (accessed 2026-08-30).

Coverage limits

The published qualitative set is too small to support prevalence claims and is biased toward people entering surgery or participating online. Public organization material establishes available support and advocacy infrastructure, not treatment effectiveness. A live PubMed update on 2026-08-30 found one small postoperative employment interview cohort but no direct stenosis-specific qualitative evidence from Africa, Latin America, the Middle East or South Asia, no dedicated caregiver study and no study centered on failed-device experience. Commercial treatment sites and anonymous forum posts were excluded.