TY - JOUR
T1 - Recovery priorities in degenerative cervical myelopathy
T2 - A cross-sectional survey of an international, online community of patients
AU - Davies, Benjamin
AU - Mowforth, Oliver
AU - Sadler, Iwan
AU - Aarabi, Bizhan
AU - Kwon, Brian
AU - Kurpad, Shekar
AU - Harrop, James S.
AU - Wilson, Jefferson R.
AU - Grossman, Robert
AU - Fehlings, Michael G.
AU - Kotter, Mark
N1 - Funding Information:
Funding This report is independent research arising from a Clinician Scientist Award, CS-2015-15-023, supported by the National Institute for Health Research. Research in the senior author’s laboratory is supported by a core support grant from the Wellcome Trust and MRC to the Wellcome Trust-Medical Research Council Cambridge Stem Cell Institute. MK is supported by an NIHR Clinician Scientist Award. MGF is supported by the Halbert Chair in Neural Repair and Regeneration. Partial support for this work was obtained from the AOSpine Knowledge Forum in Spinal Cord Injury. The authors also acknowledge the AOSpine for their support of travel and meetings costs. The NIHR HTC, from the Brain Injury Medical Technology Cooperative, provided the funding for Google Adwords survey advertising. Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care. Competing interests JSH reports being a Medical Advisor for Depuy Synthes and Ethicon, being an Educational Speaker at Globus Medical and research funding from AO Spine. MGF reports consulting for Fortuna Fix. MK declares a grant from the National Institute for Health Research, travel support from AO Spine and is founder of Myelopathy.org, the first charity for patients with cervical myelopathy. The remaining authors have nothing to declare.
Funding Information:
This report is independent research arising from a Clinician Scientist Award, CS-2015- 15-023, supported by the National Institute for Health Research. Research in the senior author's laboratory is supported by a core support grant from the Wellcome Trust and MRC to the Wellcome Trust-Medical Research Council Cambridge Stem Cell Institute. MK is supported by an NIHR Clinician Scientist Award. MGF is supported by the Halbert Chair in Neural Repair and Regeneration. Partial support for this work was obtained from the AOSpine Knowledge Forum in Spinal Cord Injury. The authors also acknowledge the AOSpine for their support of travel and meetings costs. The NIHR HTC, from the Brain Injury Medical Technology Cooperative, provided the funding for Google Adwords survey advertising.
Publisher Copyright:
© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.
PY - 2019/10/1
Y1 - 2019/10/1
N2 - 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.
AB - 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.
KW - cervical
KW - degeneration
KW - disability
KW - disc herniation
KW - myelopathy
KW - ossification posterior longitudinal ligament
KW - patient and public involvement
KW - priority setting
KW - questionnaire
KW - recovery
KW - research wastage
KW - spondylosis
KW - spondylotic
KW - stenosis
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UR - http://www.scopus.com/inward/citedby.url?scp=85073107134&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2019-031486
DO - 10.1136/bmjopen-2019-031486
M3 - Article
C2 - 31601597
AN - SCOPUS:85073107134
VL - 9
JO - BMJ open
JF - BMJ open
SN - 2044-6055
IS - 10
M1 - 031486
ER -