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Recovery priorities in degenerative cervical myelopathy: a cross-sectional survey of an international, online community of patients.

Accepted version
Peer-reviewed

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Authors

Davies, Benjamin 
Sadler, Iwan 
Aarabi, Bizhan 
Kwon, Brian 

Abstract

OBJECTIVES: To establish the recovery priorities of individuals suffering with degenerative cervical myelopathy (DCM). DESIGN: A cross-sectional, observational study. SETTING: Patients from across the world with a diagnosis of DCM accessed the survey over an 18-month period on Myelopathy.org, an international myelopathy charity. PARTICIPANTS: 481 individuals suffering from DCM completed the online survey fully. MAIN OUTCOME MEASURES: Functional recovery domains were established through qualitative interviews and a consensus process. Individuals were asked about their disease characteristics, including limb pain (Visual Analogue Scale) and functional disability (patient-derived version of the modified Japanese Orthopaedic Association score). Individuals ranked recovery domains (arm and hand function, walking, upper body/trunk function, sexual function, elimination of pain, sensation and bladder/bowel function) in order of priority. Priorities were analysed as the modal first priority and mean ranking. The influence of demographics on selection was analysed, with significance p<0.05. RESULTS: Of 659 survey responses obtained, 481 were complete. Overall, pain was the most popular recovery priority (39.9%) of respondents, followed by walking (20.2%), sensation (11.9%) and arm and hand function (11.5%). Sexual function (5.7%), bladder and bowel (3.7%) and trunk function (3.5%) were chosen less frequently. When considering the average ranking of symptoms, while pain remained the priority (2.6±2.0), this was closely followed by walking (2.9±1.7) and arm/hand function (3.0±1.4). Sensation ranked lower (4.3±2.1). With respect to disease characteristics, overall pain remained the recovery priority, with the exception of patients with greater walking impairment (p<0.005) who prioritised walking, even among patients with lower pain scores. CONCLUSIONS: This is the first study investigating patient priorities in DCM. The patient priorities reported provide an important framework for future research and will help to ensure that it is aligned with patient needs.

Description

Keywords

cervical, degeneration, disability, disc herniation, myelopathy, ossification posterior longitudinal ligament, patient and public involvement, priority setting, questionnaire, recovery, research wastage, spondylosis, spondylotic, stenosis, Cervical Vertebrae, Cross-Sectional Studies, Female, Health Priorities, Humans, Male, Middle Aged, Recovery of Function, Spinal Cord Diseases, Surveys and Questionnaires, Treatment Outcome

Journal Title

BMJ Open

Conference Name

Journal ISSN

2044-6055
2044-6055

Volume Title

9

Publisher

BMJ

Rights

All rights reserved
Sponsorship
Department of Health (via National Institute for Health Research (NIHR)) (CS-2015-15-023)
NIHR Welcome Trust