Dataset Information

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

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.

SUBMITTER: Davies B

PROVIDER: S-EPMC6797315 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Davies Benjamin B Mowforth Oliver O Sadler Iwan I Aarabi Bizhan B Kwon Brian B Kurpad Shekar S Harrop James S JS Wilson Jefferson R JR Grossman Robert R Fehlings Michael G MG Kotter Mark M

BMJ open 20191010 10

<h4>Objectives</h4>To establish the recovery priorities of individuals suffering with degenerative cervical myelopathy (DCM).<h4>Design</h4>A cross-sectional, observational study.<h4>Setting</h4>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.<h4>Participants</h4>481 individuals suffering from DCM completed the online survey fully.<h4>Main outcome measures</h4>Functional recovery domains wer ...[more]

PMID: 31601597

Similar Datasets

Project description:Background: Degenerative cervical myelopathy (DCM), also known as cervical spondylotic myelopathy is the leading cause of spinal cord compression in adults. The mainstay of treatment is surgical decompression, which leads to partial recovery of symptoms, however, long term prognosis of the condition remains poor. Despite advances in treatment methods, the underlying pathobiology is not well-known. A better understanding of the disease is therefore required for the development of treatments to improve outcomes following surgery. Objective: To systematically evaluate the pathophysiology of DCM and the mechanism underlying recovery following decompression. Methods: A total of 13,808 published articles were identified in our systematic search of electronic databases (PUBMED, WEB OF SCIENCE). A total of 51 studies investigating the secondary injury mechanisms of DCM or physiology of recovery in animal models of disease underwent comprehensive review. Results: Forty-seven studies addressed the pathophysiology of DCM. Majority of the studies demonstrated evidence of neuronal loss following spinal cord compression. A number of studies provided further details of structural changes in neurons such as myelin damage and axon degeneration. The mechanisms of injury to cells included direct apoptosis and increased inflammation. Only four papers investigated the pathobiological changes that occur in spinal cords following decompression. One study demonstrated evidence of axonal plasticity following decompressive surgery. Another study demonstrated ischaemic-reperfusion injury following decompression, however this phenomenon was worse when decompression was delayed. Conclusions: In preclinical studies, the pathophysiology of DCM has been poorly studied and a number of questions remain unanswered. The physiological changes seen in the decompressed spinal cord has not been widely investigated and it is paramount that researchers investigate the decompressed spinal cord further to enable the development of therapeutic tools, to enhance recovery following surgery.

Project description:BackgroundDegenerative cervical myelopathy (DCM), a progressive spinal cord injury caused by spinal cord compression from degenerative pathology, often presents with neck pain, sensorimotor dysfunction in the upper or lower limbs, gait disturbance, and bladder or bowel dysfunction. Its symptomatology is very heterogeneous, making early detection as well as the measurement or understanding of the underlying factors and their consequences challenging. Increasingly, evidence suggests that DCM may consist of subgroups of the disease, which are yet to be defined.ObjectiveThis study aimed to explore whether machine learning can identify clinically meaningful groups of patients based solely on clinical features.MethodsA survey was conducted wherein participants were asked to specify the clinical features they had experienced, their principal presenting complaint, and time to diagnosis as well as demographic information, including disease severity, age, and sex. K-means clustering was used to divide respondents into clusters according to their clinical features using the Euclidean distance measure and the Hartigan-Wong algorithm. The clinical significance of groups was subsequently explored by comparing their time to presentation, time with disease severity, and other demographics.ResultsAfter a review of both ancillary and cluster data, it was determined by consensus that the optimal number of DCM response groups was 3. In Cluster 1, there were 40 respondents, and the ratio of male to female participants was 13:21. In Cluster 2, there were 92 respondents, with a male to female participant ratio of 27:65. Cluster 3 had 57 respondents, with a male to female participant ratio of 9:48. A total of 6 people did not report biological sex in Cluster 1. The mean age in this Cluster was 56.2 (SD 10.5) years; in Cluster 2, it was 54.7 (SD 9.63) years; and in Cluster 3, it was 51.8 (SD 8.4) years. Patients across clusters significantly differed in the total number of clinical features reported, with more clinical features in Cluster 3 and the least clinical features in Cluster 1 (Kruskal-Wallis rank sum test: χ22=159.46; P<.001). There was no relationship between the pattern of clinical features and severity. There were also no differences between clusters regarding time since diagnosis and time with DCM.ConclusionsUsing machine learning and patient-reported experience, 3 groups of patients with DCM were defined, which were different in the number of clinical features but not in the severity of DCM or time with DCM. Although a clearer biological basis for the clusters may have been missed, the findings are consistent with the emerging observation that DCM is a heterogeneous disease, difficult to diagnose or stratify. There is a place for machine learning methods to efficiently assist with pattern recognition. However, the challenge lies in creating quality data sets necessary to derive benefit from such approaches.

Project description:BackgroundDegenerative cervical myelopathy (DCM) is widely accepted as the most common cause of adult myelopathy worldwide. Despite this, there is no specific term or diagnostic criteria in the International Classification of Diseases 11th Revision and no Medical Subject Headings (MeSH) or an equivalent in common literature databases. This makes searching the literature and thus conducting systematic reviews or meta-analyses imprecise and inefficient. Efficient research synthesis is integral to delivering evidence-based medicine and improving research efficiency.ObjectiveThis study aimed to illustrate the difficulties encountered when attempting to carry out a comprehensive and accurate evidence search in the field of DCM by identifying the key sources of imprecision and quantifying their impact.MethodsTo identify the key sources of imprecision and quantify their impact, an illustrative search strategy was developed using a validated DCM hedge combined with contemporary strategies used by authors in previous systematic reviews and meta-analyses. This strategy was applied to Medical Literature Analysis and Retrieval System Online (MEDLINE) and Excerpta Medica dataBASE (EMBASE) databases looking for relevant DCM systematic reviews and meta-analyses published within the last 5 years.ResultsThe MEDLINE via PubMed search strategy returned 24,166 results, refined to 534 papers after the application of inclusion and exclusion criteria. Of these, 32.96% (176/534) results were about DCM, and 18.16% (97/534) of these were DCM systematic reviews or meta-analyses. Non-DCM results were organized into imprecision categories (spinal: 268/534, 50.2%; nonspinal: 84/534, 15.5%; and nonhuman: 8/534, 1.5%). The largest categories were spinal cord injury (75/534, 13.67%), spinal neoplasms (44/534, 8.24%), infectious diseases of the spine and central nervous system (18/534, 3.37%), and other spinal levels (ie, thoracic, lumbar, and sacral; 18/534, 3.37%). Counterintuitively, the use of human and adult PubMed filters was found to exclude a large number of relevant articles. Searching a second database (EMBASE) added an extra 12 DCM systematic reviews or meta-analyses.ConclusionsDCM search strategies face significant imprecision, principally because of overlapping and heterogenous search terms, and inaccurate article indexing. Notably, commonly employed MEDLINE filters, human and adult, reduced search sensitivity, whereas the related articles function and the use of a second database (EMBASE) improved it. Development of a MeSH labeling and a standardized DCM definition would allow comprehensive and specific indexing of DCM literature. This is required to support a more efficient research synthesis.

Project description:BackgroundDegenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.ObjectiveThis study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors.MethodsCarers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.ResultsDCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.ConclusionsCaring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

Dataset Information

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

Objectives

Design

Setting

Participants

Main outcome measures

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets