The authors have declared that no competing interests exist.
Degenerative cervical myelopathy (DCM) is a chronic neurological condition estimated to affect 1 in 50 adults. Due to its diverse impact, trajectory and management options, patient-centred care and shared decision making are essential. In this scoping review, we aim to explore whether information needs in DCM are currently being met in available DCM educational resources. This forms part of a larger
A search was completed encompassing MEDLINE, Embase and grey literature. Resources relevant to DCM were compiled for analysis. Resources were grouped into 5 information types: scientific literature, videos, organisations, health education websites and patient information leaflets. Resources were then further arranged into a hierarchical framework of domains and subdomains, formed through inductive analysis. Frequency statistics were employed to capture relative popularity as a surrogate marker of potential significance.
Of 2674 resources, 150 information resources addressing DCM were identified: 115 scientific literature resources, 28 videos, 5 resources from health organisations and 2 resources from health education websites. Surgical management was the domain with the largest number of resources (66.7%, 100/150). The domain with the second largest number of resources was clinical presentation and natural history (28.7%, 43/150). Most resources (83.3%, 125/150) were designed for professionals. A minority (11.3% 17/150) were written for a lay audience or for a combined audience (3.3%, 5/150).
Educational resources for DCM are largely directed at professionals and focus on surgical management. This is at odds with the needs of stakeholders in a lifelong condition that is often managed without surgery, highlighting an unmet educational need.
In his address to the Royal College of Surgeons in 1923, Rudyard Kipling described words as “the most powerful drug used by mankind”. This metaphor reflects how good communication can have profound effects on clinical decision making [
Communication is particularly important in chronic conditions such as degenerative cervical myelopathy (DCM) [
DCM management decisions are therefore complex, individualised [
Achieving this is challenging. Many factors contribute to effective communication [
Providing information effectively for individual consumers requires a person-centred approach, which can be enhanced by the use of communication tools [
The objective of this scoping review was to undertake a structured exploration of the information provided by current DCM educational resources. The aim is to facilitate development of additional tools to support communication in DCM, forming part of a larger
DCM educational resources were categorised into 5 types: scientific literature, videos, health organisations, health education websites and hospital information leaflets. Consensus on resource types was reached by the authorship group, which included people with DCM. Health seeking behaviour of the public and health information provision from healthcare professionals was considered when developing the categorisation system [
A comprehensive search strategy was developed and refined for each of 7 key resource domains (
Method | Tool | Search term | Additional information |
---|---|---|---|
1 | Select webpage on patient or professional resources from navigation menu | Cervical myelopathy | N/A |
2 | Searchbar on website | Cervical myelopathy | Search performed once for a given website |
3 | Find in page function (Ctrl + F) | Cervical myelopathy | Search repeated for each webpage page on a given website |
Hierarchical search strategy to identify educational content on DCM from health organisation websites, health education websites and hospital patient information leaflets. Method 1 was employed first. Method 2 was employed if no information on DCM was found using method 1. Method 3 was used employed if no information was found using methods 1 and 2. If no information found using all 3 methods, the resources was excluded.
Overall inclusion and exclusion criteria were created (
Inclusion Criteria | Exclusion Criteria |
---|---|
English language | Heterogenous populations (not exclusively DCM or CSM +/- OPLL) |
Educational tool | Cervical myelopathy of non-degenerative aetiology |
Degenerative cervical myelopathy OR Cervical spondylotic myelopathy +/- OPLL | Cervical radiculopathy |
Overall inclusion and exclusion criteria for screening resources to identify those with educational DCM content. These criteria were applied to screen resources of from all 5 key resource types: scientific literature, videos, health organisations, health education website and hospital patient information leaflets. The aim was to identify public-facing resources that contained educational content on DCM. Specific inclusion and exclusion criteria were then adapted for each resource type (
High sensitivity DCM search filters were used to search the databases EMBASE [
Google is the most popular search engine, accounting for 93% of all internet searches [
A comprehensive global list of organisations with potentially relevant educational content on DCM were identified by the AO Spine RECODE-DCM ENVIROSCAN project. This project is collaborative research effort, aiming to increase DCM research efficiency [
Alexa Top Sites, part of Amazon Web Services, was used to identify the most popular websites under the category of health, subcategory education, based on website traffic on 6th May 2020 [
A list of the hospitals recorded as specialised providers of complex spinal surgery from Appendix C of the spinal services report (
Educational information was extracted from included resources by one author (RU) at two separate time points, to ensure all educational content was extracted.
Extracted information was then categorised inductively by two authors (RU and BMD) into 7 key information domains: aetiology, pathophysiology and epidemiology; clinical presentation and natural history; diagnosis and monitoring progression; surgical management; non-surgical management; predicting outcomes; assessing research and developing guidelines (
Domain number | Domain name |
---|---|
1 | Aetiology, pathophysiology and epidemiology |
2 | Clinical presentation and natural history |
3 | Diagnosis and monitoring progression |
4 | Surgical management |
5 | Non-surgical management |
6 | Predicting outcomes |
7 | Assessing research and developing guidelines |
Seven key domains were identified to categorise educational content on DCM in to.
Title | Code | Narrative Reviews (16) | Systematic Reviews (99) | Videos (28) | Organisations (5) | Health Education Websites (2) | |||||
---|---|---|---|---|---|---|---|---|---|---|---|
Aetiology, pathophysiology and epidemiology | 1 | 12 | 75% | 6 | 6% | 11 | 39% | 2 | 40% | 2 | 100% |
Aetiology | 1a | 2 | 13% | 4 | 4% | 1 | 4% | 0 | 0% | 0 | 0% |
Pathophysiology | 1b | 11 | 69% | 2 | 2% | 10 | 36% | 2 | 40% | 2 | 100% |
Epidemiology | 1c | 11 | 69% | 0 | 0% | 0 | 0% | 0 | 0% | 0 | 0% |
Clinical presentation and natural history | 2 | 11 | 69% | 6 | 6% | 20 | 71% | 4 | 80% | 2 | 100% |
Symptoms | 2a | 10 | 63% | 0 | 0% | 18 | 64% | 4 | 80% | 2 | 100% |
Signs | 2b | 8 | 50% | 1 | 1% | 7 | 25% | 0 | 0% | 0 | 0% |
Natural history | 2c | 10 | 63% | 5 | 5% | 12 | 43% | 4 | 80% | 2 | 100% |
Diagnosis and monitoring progression | 3 | 12 | 75% | 11 | 11% | 7 | 25% | 3 | 60% | 1 | 50% |
Diagnosis | 3ai | 10 | 63% | 8 | 8% | 7 | 25% | 3 | 60% | 1 | 50% |
Monitoring progression | 3aii | 4 | 25% | 2 | 2% | 0 | 0% | 0 | 0% | 0 | 0% |
Clinical assessment | 3bi | 10 | 63% | 6 | 6% | 7 | 25% | 3 | 60% | 1 | 50% |
Radiological assessment | 3bii | 10 | 63% | 1 | 1% | 5 | 18% | 0 | 0% | 0 | 0% |
Electrophysiological assessment | 3biii | 7 | 44% | 1 | 1% | 1 | 4% | 1 | 20% | 0 | 0% |
Biomarker assessment | 3biv | 3 | 19% | 1 | 1% | 0 | 0% | 0 | 0% | 0 | 0% |
Surgical management | 4 | 11 | 69% | 61 | 62% | 22 | 79% | 4 | 80% | 2 | 100% |
Surgical approach decision | 4a | 8 | 50% | 0 | 0% | 6 | 21% | 0 | 0% | 0 | 0% |
Surgical procedure—anterior only | 4bi | 0 | 0% | 14 | 14% | 1 | 4% | 0 | 0% | 0 | 0% |
Surgical procedure—posterior only | 4bii | 0 | 0% | 19 | 19% | 1 | 4% | 0 | 0% | 0 | 0% |
Surgical procedure—both | 4biii | 8 | 50% | 25 | 25% | 9 | 32% | 1 | 20% | 1 | 50% |
Surgical procedure—neither | 4biv | 3 | 19% | 0 | 0% | 11 | 39% | 3 | 60% | 1 | 50% |
Surgical outcomes | 4c | 10 | 63% | 61 | 62% | 6 | 21% | 1 | 20% | 0 | 0% |
Non-surgical management | 5 | 6 | 38% | 4 | 4% | 3 | 11% | 2 | 40% | 1 | 50% |
Physiotherapy | 5ai | 3 | 19% | 4 | 4% | 2 | 7% | 1 | 20% | 1 | 50% |
Medications | 5aii | 6 | 38% | 2 | 2% | 1 | 4% | 1 | 20% | 1 | 50% |
Cervical traction | 5aiii | 5 | 31% | 3 | 3% | 0 | 0% | 1 | 20% | 0 | 0% |
Cervical bracing | 5aiv | 5 | 31% | 1 | 1% | 1 | 4% | 1 | 20% | 1 | 50% |
Bedrest | 5av | 3 | 19% | 0 | 0% | 0 | 0% | 0 | 0% | 0 | 0% |
Avoidance of risky activities/environment | 5avi | 2 | 13% | 0 | 0% | 0 | 0% | 0 | 0% | 0 | 0% |
Orthoses | 5avii | 1 | 6% | 2 | 2% | 0 | 0% | 0 | 0% | 0 | 0% |
No specific interventions (unspecified) | 5aviii | 1 | 6% | 1 | 1% | 1 | 4% | 0 | 0% | 0 | 0% |
Non-surgical outcomes | 5b | 5 | 31% | 4 | 4% | 0 | 0% | 0 | 0% | 0 | 0% |
Predicting outcomes | 6 | 7 | 44% | 19 | 19% | 1 | 4% | 0 | 0% | 0 | 0% |
Clinical predictors | 6ai | 6 | 38% | 9 | 9% | 1 | 4% | 0 | 0% | 0 | 0% |
Imaging predictors | 6aii | 7 | 44% | 10 | 10% | 0 | 0% | 0 | 0% | 0 | 0% |
Non-specified predictors | 6aiii | 0 | 0% | 2 | 2% | 0 | 0% | 0 | 0% | 0 | 0% |
Surgical outcomes | 6bi | 6 | 38% | 15 | 15% | 1 | 4% | 0 | 0% | 0 | 0% |
Non-surgical outcomes | 6bii | 1 | 6% | 1 | 1% | 0 | 0% | 0 | 0% | 0 | 0% |
Natural disease course Outcomes | 6biii | 1 | 6% | 9 | 9% | 0 | 0% | 0 | 0% | 0 | 0% |
Assessing research and developing guidelines | 7 | 3 | 19% | 5 | 5% | 1 | 4% | 1 | 20% | 0 | 0% |
Future directions | 7ai | 3 | 19% | 0 | 0% | 0 | 0% | 0 | 0% | 0 | 0% |
Reporting outcome measures | 7aii | 0 | 0% | 3 | 3% | 0 | 0% | 0 | 0% | 0 | 0% |
Reporting trends | 7aiii | 0 | 0% | 1 | 1% | 0 | 0% | 0 | 0% | 0 | 0% |
Developing guidelines | 7b | 0 | 0% | 1 | 1% | 1 | 4% | 1 | 20% | 0 | 0% |
For each resource type the number of resources in the domain and subdomain is recorded and the percentage of resources containing information on the domain or subdomain, of all the resources of that type. A single resource can contain information on more than one domain or subdomain within a domain.
Patient Criteria | Professional Criteria |
---|---|
Information delivered in style for individual from non-healthcare background, including use of simple language (avoiding medical jargon) | Information delivered in style for individual from healthcare background, including use of medical jargon, clinical management applications, research study applications |
Pre-determined audience by source nature e.g. patient information leaflet (PIL) | Pre-determined audience by source nature e.g. scientific literature |
Source content providing information for an individual with DCM on symptoms to look out for, what to expect through interactions with healthcare professionals for accessing treatment pathway, how they can adapt to living with their condition | Information delivered to audience with a presumed knowledge of anatomy, physiology or pathology of the spine and spinal cord |
Source content providing information on how to take a history, perform a physical examination, investigations to order or approach to management of an individual with DCM |
Criteria to determine the target audience of each resource: patients, professionals or a combined audience Resources that met components of both the patient and professional criteria were recorded as having a combined audience.
Of the 2674 resources screened, 150 DCM information resources were identified: 115 from the scientific literature, 28 videos, 5 from organisations and 2 from health education websites (
The process of identifying the educational resources that met inclusion criteria from databases illustrated as a flow diagram.
The most common domain addressed was surgical management, with 67% (100/150) of resources. The least common domain was assessing research and developing guidelines, with 7% (10/150) of resources (
The most common domain was surgical management (67%). The least common domain was assessing research and developing guidelines (7%).
Key themes identified were that the disease process is poorly understood, however there appears to be consensus that both static and dynamic injury contribute to chronic cervical cord compression. Most resources in this domain (82%, 27/33) discussed DCM pathophysiology, including ischaemia, disruption of the spinal cord-blood barrier, inflammation and apoptosis.
A total of 12% (4/33) of resources in this domain consider the role of genetic factors in DCM, such as the fact that only small percentage of individuals with radiological evidence of cervical cord compression have clinical features of DCM, may represent a genetic susceptibility to DCM.
In total, 33% (11/33) of resources addressed epidemiology. Scientific literature resources in particular, often report DCM as the leading cause of spinal cord dysfunction in adults worldwide, however, frequently lack precise estimates of prevalence and incidence. Common reasons cited include the lack of a standardised definition of DCM, difficulty in diagnosis, and a lack of large-scale observational studies.
A total of 79% (34/43) of resources in this domain described the symptoms of DCM, with fewer reporting on signs (37%, 16/43). Clinical presentation was often covered thoroughly describing the classical presentation of neck pain or stiffness, poor manual dexterity, clumsiness, paraesthesia, gait dysfunction and bladder and bowel dysfunction. Over 75% (33/43) of resources in this domain reported on the natural history of DCM, often commenting on the variability and unpredictability. A frequent statistic cited by several resources, is that 20% to 62% of people with DCM experience clinical deterioration (defined by a change of at least one point in the modified Japanese Orthopaedic Association (mJOA) score over a 3-to-6-year follow-up period [
Diagnosis was discussed by 85% (29/34) of resources in this domain. A key theme addressed was the need for specialist involvement, including the importance for doctors in primary healthcare to refer a person with suspected DCM to a spinal surgeon, who may fall under the remit of neurosurgery or orthopaedics, for a specialist assessment.
Radiological assessment and clinical assessment were discussed by 47% (16/34) and 79% (27/34) of resources respectively. The combination of MRI of the cervical spine alongside clinical signs and symptoms was an important point frequently made regarding diagnosis. There is also consensus that DCM is difficult to diagnose and that there is poor awareness of the condition among the general public and non-specialist healthcare professionals.
The topic of monitoring progression, reported on by 18% (6/34) resources, involved commentary that different resources refer to different tools to assess functional impairment in DCM. This has led to inconsistencies in assessing outcomes. The mJOA scale and Nurick scale are commonly used DCM-specific indices, yet both have poor sensitivity [
This domain was covered by 67% (100/150) of all resources. Key themes were that surgery aims primarily to decompress the spinal cord and aims secondarily to stabilise the spinal column. Common anterior and posterior surgical approaches, such as anterior cervical discectomy and fusion and laminectomy were frequently discussed. A total of 15% (15/100) of resources in this domain reported on anterior approach only, 20% (20/100) on posterior only, 44% (44/100) on both anterior and posterior, and 18% (18/100) discussed surgical procedure more generally. A key theme covered by 14% (14/100) of resources, including both videos and scientific literature, were factors that determine surgical approach. Systematic reviews were the most common resource type (61%, 61/100) to report on surgical management.
Surgical outcomes, including efficacy and complications of surgery, were discussed by 78% (78/100) of resources in this domain. Another frequently discussed theme was the role of surgery in stopping the progression of the disease and preventing further neurological decline. A small number of scientific literature resources cited recently growing evidence that surgery may improve neurological function. Resources frequently refer to clinical guidelines published by AO Spine in 2017, which strongly recommend surgery for moderate to severe DCM and recommend a structured trial of rehabilitation or surgery for mild DCM [
There was considerably lower coverage of the nonsurgical management domain compared to the surgical management domain. A total of 63% (10/16) of nonsurgical management resources were from the scientific literature. Resources described the consensus that nonoperative management does not provide definitive treatment for spinal cord compression but may have a role in symptomatic management for mild DCM. Nonoperative management discussed included physiotherapy (69%, 11/16), medication (69%, 11/16), cervical traction (56%, 9/16), orthoses (19%, 3/16), bedrest (19%, 3/16) and avoidance of high-risk activities (13%, 2/16). In total, 56% (9/16) of resources in this domain discussed outcomes of non-surgical management, all of which were from the scientific literature. The lack of high-quality evidence to support the role of non-surgical management was commonly discussed.
Predicting outcomes was covered by 18% (27/150) of resources. All resources were from the scientific literature, except for one video, discussing modelling outcome prediction in DCM. A key theme was the use of clinical data and imaging data to predict outcomes, discussed by 59% (16/27) and 63% (17/27) of resources, respectively. Literature resources discussed factors that may determine if a person is likely to benefit from surgery; surgical outcomes were discussed by 81% (22/27) of resources in this domain, while outcomes from non-operative management were discussed by 7% (2/27) of resources. Commonly cited factors associated with poorer surgical outcomes include older age, longer symptom duration, and worse preoperative disease severity [
In total, 7% (10/150) of resources provided information on assessing research and developing guidelines. An important theme was inconsistency in terminology and outcomes reducing the efficiency of research, which was covered by 30% (3/10) of resources in this domain. Future research to further the field was discussed by 30% (3/10) of resources. Advances in imaging, including quantitative MRI, and the use of biomarkers are two key upcoming areas. Another theme is addressing knowledge gaps about DCM, for example with respect to clinical practice guidelines the optimal treatment strategy for mild DCM remains unknown [
Following a comprehensive search, 150 DCM educational resources were analysed. The majority were targeted at professionals, rather than a lay audience. Information provision largely focused on surgical management and to a lesser extent clinical presentation.
More than three-quarters (77%, 115/150) of all resources identified came from the scientific literature, this included systematic reviews (66%, 99/150) and narrative reviews (11%, 16/150). The two domains with the highest proportion of resources coming from the scientific literature were domain 6 on predicting outcomes (96%, 26/27) and domain 7 on assessing research and developing guidelines (80%, 8/10). Of all 115 resources from the scientific literature, the two most common domains covered were domain 4 on surgical management (63%, 72/115) and domain 6 (23%, 26/115). As educational content from the scientific literature is directed at healthcare professionals, it is not surprising that there is a focus on surgery, the main treatment modality for DCM. The content is especially important for informing guidelines and making evidence-based decisions on the surgical approach for spinal decompression [
Of all 72 resources from the scientific literature that covered surgical management, 71 (99%) addressed outcomes of surgery, compared to 27% (6/22) of videos, 25% (1/4) of resources from organisation and 0% (0/2) of resources from health education websites. Only 4% (3/72) of literature resources on surgical management discussed surgical procedures in general, non-technical terms, whereas non-literature resources were more likely to: 50% (11/22) of videos, 75% (3/4) of organisations, 50% (1/2) health education websites discussed surgery more generally.
For the 28 video resources, surgical management was the most common domain (79%, 22/28) and the second most common domain was clinical presentation and natural history (71%, 20/28). Videos were targeted at the general public and professionals with equal frequency. Understanding how to recognise the disease and explaining how it is managed were common notable features of videos. The small number of organisations and health education websites identified, limited depth analysis of these resource types and highlights the paucity of DCM educational resources.
The total of 150 educational resources identified within the parameters of this review, highlights the limited educational resources available on DCM, especially for a lay audience (11%, 16/150). Possible factors that may be contributing include the variable terminology used for the condition and the fact that there are many aspects of DCM that are not well understood. These factors may create barriers for development of educational resources since answers to certain questions about the condition simply do not exist. The AO Spine RECODE-DCM project has established global research priorities to address knowledge gaps in the field and this will help coordinate the research effort to tackle this issue [
All domains, except surgical management, were covered by less than 30% of the educational resources. Domain 1 coverage was particularly low (22%, 33/150), which may be due to poor understanding of DCM aetiological factors, pathophysiological mechanisms, and lack of large epidemiological datasets to inform accurate estimates of incidence and prevalence. Furthermore, domain 2 coverage may be low (29%, 43/150) due to the variability in initial presentation and disease progression. Moreover, low domain 3 coverage (23%, 34/150) may be because DCM is difficult to diagnose, especially early in the disease course, where symptoms may be non-specific, making appropriate educational resources challenging to produce.
Explaining monitoring of progression in resources can be a challenge when there is a lack of consensus on what tools should be used. Very poor coverage of domain 5 (11%, 16/150), is likely due to the lack of evidence supporting non-surgical management in DCM, making it difficult to justify the inclusion in educational resources, especially when focusing on evidence-based management. Domain 6 coverage being low (18%, 27/150), might again be explained by the paucity of evidence for outcome prediction, in particular identifying factors that will determine which patients will be most likely to benefit from surgery. Domain 7 (7%, 10/150) had the lowest coverage. This is partly due to this being almost exclusively the remit of scientific literature. Assessing patterns and commenting on the progress of research in the field is challenging when the field of DCM research is still relatively small [
Resources from outside the scientific literature were in the minority (23%, 35/150). This aligns with the paucity of resources targeted at a lay audience, who are generally less likely to obtain their information on DCM from the scientific literature [
A focus on surgery is consistent with the wider scientific literature [
This review therefore indicates that education gaps exist within DCM, due to its paucity but also lack of breadth. However, what this review does not characterise is the information need of people living with DCM. This is the objective of a qualitative study being undertaken in parallel by
With this information, the aim is to develop solutions to support personalised information exchange in DCM. One approach may be the formation of core information sets (CIS)—refined lists of critical topics to be discussed, for example in supporting informed consent for surgery [
CIS likely have value far beyond surgical consent. In DCM, patients often share common or stereotyped transitions points in their care, such as obtaining diagnosis or preparing for surgical treatment. This makes a series of CIS a potentially effective adjuvant to improve communication and outcomes in DCM. The information domains identified in this review may align well with this. Furthermore,
Resources were selected pragmatically using a multi-stakeholder perspective and searches were only conducted online. Relevant educational resources, including physical content such as printed information leaflets and local resources not freely available online may therefore not have been captured. The consequence of this, on the conclusions drawn in the article, is unknown. Patients are now known to use the internet as their predominant source of healthcare information over healthcare professionals [
The literature search was performed in May 2020, identifying pre-COVID-19 pandemic data on educational resources. Resources produced during the pandemic will not have been captured. However, the pre-pandemic resources are more likely to be consistent with addressing the research question and help orienting clinical research and the formation of CIS once the COVID-19 pandemic is over.
Furthermore, our inclusion criteria stipulated information sources should be specifically focused on DCM. DCM information may have been grouped with other medical conditions such as cervical radiculopathy, as well as being placed in the broader category of non-traumatic spinal cord injury [
However, this is unlikely to be a limitation for DCM CIS. Firstly, owing to a poor awareness of DCM amongst the general public and the general medical community [
There are few dedicated educational resources for people with DCM or the general public. The majority of education material is found within the scientific literature for a professional audience. Key areas of focus included surgical management; clinical presentation and natural history; non-surgical management; and diagnosis and monitoring for progression. Aetiology, pathophysiology, epidemiology, predicting outcomes and developing guidelines were also addressed by professionally orientated resources. This information will be used to inform a larger initiative by
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BMD is supported by a NIHR Clinical Doctoral Research Fellowship. ODM is supported by an Academic Clinical Fellowship.
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.
PONE-D-22-02227A scoping review of information provided within degenerative cervical myelopathy education resources: towards enhancing shared decision makingPLOS ONE
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Reviewer #1: Thanks for the submission.
Line 271: It was unanticipated that no hospital issued information was identified. Could the authors hypothesise why that was, given the high incidence of DCM?
Line 332: 1st mention of mJOA without defining the acronym (is is defined in line 339)
Line 340: Please reference this statement
Line 522: Suspect that this is a very significant weakness of this work. Printed information remains the mainstay of patients informing in secondary care in many centres. Could the authors comment any evidence as to how significantly this could influence conclusions if included?
Reviewer #2: This represents a much needed study on the unmet needs of current provision of educational support to DCM stakeholders, namely patients, carers and healthcare professionals.
I have few comments and two references to suggest:
1) The methodology clearly states that the search was conducted in May 2020. I would suggest mentioning this aspect in the Limitation of the Study section: some documents may have been missed as a result of this choice, however it should also me noted that the search identified pre-pandemic data that might be more consistent with the research question and help orienting clinical research once COVID-19 will be over.
2) I suppose you have run your search for videos on both Google and Youtube, you should state that the first is more generic the second more specific for this resource type.
3) There are two articles that I would suggest adding to the reference list, both aimed at a surgical and AHCP audience, one on surgical decision making and one on the future challenges of DCM management, they would certainly represent a good contribution for the discussion on domains 4 and 7:
- Kato S, Ganau M, Fehlings MG. Surgical decision-making in degenerative cervical myelopathy - Anterior versus posterior approach. J Clin Neurosci. 2018 Dec;58:7-12. doi: 10.1016/j.jocn.2018.08.046.
- Ganau M, Holly LT, Mizuno J, Fehlings MG. Future Directions and New Technologies for the Management of Degenerative Cervical Myelopathy. Neurosurg Clin N Am. 2018 Jan;29(1):185-193. doi: 10.1016/j.nec.2017.09.006.
Once again, many thanks for the opportunity to review such a nice scoping review.
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UNIVERSITY OF CAMBRIDGE
Division of Neurosurgery
Department of Clinical Neurosciences
Addenbrooke’s Hospital
University of Cambridge
CB2 0QQ, United Kingdom
Email
Professor Michael G. Fehlings
Academic Editor
PLOS ONE
Re: Our manuscript titled “A scoping review of information provided within degenerative cervical myelopathy education resources: towards enhancing shared decision making” by R. Umeria, O. Mowforth, B. Grodzinski, Z. Karimi, I. Sadler, H. Wood, I. Sangeorzan, P. Fagan, R. Murphy, A. McNair, B. Davies
Dear Professor Fehlings,
We thank you and the reviewers for reviewing our manuscript and for offering us the opportunity to revise it.
We have made all suggested revisions and enclose our revised manuscript. Please find below a point-for-point response to all the editor’s and reviewers’ suggestions.
We hope you agreed that our manuscript is now much improved and suitable for publication in PLOS ONE.
Yours sincerely,
Mr Benjamin Davies
Founder and Research Director,
NIHR Doctoral Research Fellow, University of Cambridge
Specialist Registrar Neurosurgery, Cambridge University Hospital
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E: In addition to the points outlined by the reviewers, the authors need to address the perceived conflict of interest related to
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Reviewer: 1
R: Thanks for the submission.
A: We thank the reviewer for reviewing our manuscript.
R: Line 271: It was unanticipated that no hospital issued information was identified. Could the authors hypothesise why that was, given the high incidence of DCM?
A: We thank reviewer 1 for highlighting this point. We have ensured that this is addressed in the limitations. As we only searched hospital websites for their information leaflets, we acknowledge that this may have missed printed leaflets, or leaflets only available on local intranets. It is worth noting that a number of leaflets were identified, but as they were generic for the procedure (e.g. ACDF) rather than the condition of DCM, these were excluded. Given most healthcare information is now sought online, and hospital websites do typically make available their information leaflets, we think this is unlikely overall to have influenced our findings.
R: Line 332: 1st mention of mJOA without defining the acronym (is defined in line 339).
A: Thank you. We have corrected this so that mJOA acronym is defined in full the first time it appears in the text.
R: Line 340: Please reference this statement.
A: Thank you. We have added references to support this point.
R: Line 522: Suspect that this is a very significant weakness of this work. Printed information remains the mainstay of patients informing in secondary care in many centres. Could the authors comment any evidence as to how significantly this could influence conclusions if included?
A: We acknowledge in the limitations section that our study design did not capture printed leaflets, which was intentional in our methodological design. Unfortunately, it was not feasible within the scope of this review to systematically survey the written information provided to patients by all hospitals across the world. Nonetheless, the internet is now the leading source of healthcare information for patients ahead of healthcare providers[1]. Looking towards the future, printed information sheets of heterogeneous content and quality provided by individual centres will almost certainly be superseded by high quality, universally available online educational patient materials, thus we decided to focus our efforts here for this review.
Additionally, the impact patient information leaflets have on patient behaviour is known to depend on the context of the clinical situation and the invasiveness of the intervention [2,3]. It is therefore difficult to determine the exact size of the impact of having potentially missed printed patient information leaflets on the conclusions drawn in this article.
Reviewer 2
R: This represents a much needed study on the unmet needs of current provision of educational support to DCM stakeholders, namely patients, carers and healthcare professionals.
A: We thank reviewer 2 for reviewing our manuscript.
R: I have few comments and two references to suggest: 1) The methodology clearly states that the search was conducted in May 2020. I would suggest mentioning this aspect in the Limitation of the Study section: some documents may have been missed as a result of this choice, however it should also me noted that the search identified pre-pandemic data that might be more consistent with the research question and help orienting clinical research once COVID-19 will be over.
A: Thank you for raising this point, we have now added commentary in the limitations subsection of the discussion section, highlighting that pre-pandemic data is most likely to be closely aligned to answering the research question in this article.
R: 2) I suppose you have run your search for videos on both Google and YouTube, you should state that the first is more generic the second more specific for this resource type.
A: We thank reviewer 2 for highlighting this point. Our video search was run for ‘cervical myelopathy’ under the videos subsection of the Google search engine, which yielded results both for videos that were from YouTube (15 out of 28) and videos that were not from YouTube (13 out of 28). We have added further discussion to the methodology section to make this clear.
R: 3) There are two articles that I would suggest adding to the reference list, both aimed at a surgical and AHCP audience, one on surgical decision making and one on the future challenges of DCM management, they would certainly represent a good contribution for the discussion on domains 4 and 7:
- Kato S, Ganau M, Fehlings MG. Surgical decision-making in degenerative cervical myelopathy - Anterior versus posterior approach. J Clin Neurosci. 2018 Dec;58:7-12. doi: 10.1016/j.jocn.2018.08.046.
- Ganau M, Holly LT, Mizuno J, Fehlings MG. Future Directions and New Technologies for the Management of Degenerative Cervical Myelopathy. Neurosurg Clin N Am. 2018 Jan;29(1):185-193. doi: 10.1016/j.nec.2017.09.006.
A: Thank you for drawing our attention to these important references, which we have now cited at the appropriate places within the discussion section.
R: Once again, many thanks for the opportunity to review such a nice scoping review.
References
1. Swoboda, Christine M., et al. “Odds of Talking to Healthcare Providers as the Initial Source of Healthcare Information: Updated Cross-Sectional Results from the Health Information National Trends Survey (HINTS).” BMC Family Practice, vol. 19, no. 1, 29 Aug. 2018, 10.1186/s12875-018-0805-7.
2. Sustersic M, Gauchet A, Foote A, Bosson J-L. How best to use and evaluate Patient Information Leaflets given during a consultation: a systematic review of literature reviews. Health Expectations [Internet]. 2016 Sep 26;20(4):531–42. Available from:
3. 70. Kenny T. A PIL for every ill? Patient information leaflets (PILs): a review of past, present and future use. Family Practice. 1998 Oct 1;15(5):471–9.
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A scoping review of information provided within degenerative cervical myelopathy education resources: towards enhancing shared decision making
PONE-D-22-02227R1
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Reviewer #1: Thank you for addressing the comments. I do think that paper information remains an important component of information to the patient population, but I appreciate the explanations given.
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PONE-D-22-02227R1
A scoping review of information provided within degenerative cervical myelopathy education resources: towards enhancing shared decision making
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