Gathering Global Perspectives to Establish the Research Priorities and Minimum Data Sets for Degenerative Cervical Myelopathy: Sampling Strategy of the First Round Consensus Surveys of AO Spine RECODE-DCM

Abstract

Study Design Survey. Introduction AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) is an international initiative that aims to accelerate knowledge discovery and improve outcomes by developing a consensus framework for research. This includes defining the top research priorities, an index term and a minimum data set (core outcome set and core data elements set – core outcome set (COS)/core data elements (CDE)). Objective To describe how perspectives were gathered and report the detailed sampling characteristics. Methods A two-stage, electronic survey was used to gather and seek initial consensus. Perspectives were sought from spinal surgeons, other healthcare professionals and people with degenerative cervical myelopathy (DCM). Participants were allocated to one of two parallel streams: (1) priority setting or (2) minimum dataset. An email campaign was developed to advertise the survey to relevant global stakeholder individuals and organisations. People with DCM were recruited using the international DCM charity Myelopathy.org and its social media channels. A network of global partners was recruited to act as project ambassadors. Data from Google Analytics, MailChimp and Calibrum helped optimise survey dissemination. Results Survey engagement was high amongst the three stakeholder groups: 208 people with DCM, 389 spinal surgeons and 157 other healthcare professionals. Individuals from 76 different countries participated; the United States, United Kingdom and Canada were the most common countries of participants. Conclusion AO Spine RECODE-DCM recruited a diverse and sufficient number of participants for an international PSP and COS/CDE process. Whilst PSP and COS/CDE have been undertaken in other fields, to our knowledge, this is the first time they have been combined in one process.

Development of a core measurement set for research in degenerative cervical myelopathy: a study protocol (AO Spine RECODE-DCM CMS)

“… 12 However, this could not be achieved, and engaging spinal surgeons—who most frequently treat, research, and specialise in DCM—was much easier. 22 Given that the CDE and COS have been defined, and that the decision on how to measure them is likely to benefit from specific expertise, a purposively selected group using a modified nominal group technique was favoured for the CMS. It is also hypothesised that the step of sharing the results of the CMS with the wider DCM research community will facilitate dissemination and improve face validity.…”

“…Arguably, ‘how’ to measure these outcomes will require further focused perspectives on clinical assessment and trials. When conducting our international Delphi processes, engaging under-represented stakeholders was challenging 12 22 74. At the outset, we aimed to capture perspectives of people with lived experiences, surgeons and other healthcare professionals in a 2:1:1 ratio 12.…”

“…At the outset, we aimed to capture perspectives of people with lived experiences, surgeons and other healthcare professionals in a 2:1:1 ratio 12. However, this could not be achieved, and engaging spinal surgeons—who most frequently treat, research, and specialise in DCM—was much easier 22. Given that the CDE and COS have been defined, and that the decision on how to measure them is likely to benefit from specific expertise, a purposively selected group using a modified nominal group technique was favoured for the CMS.…”

“…So far, AO Spine RECODE-DCM has established the top research priorities and agreed on a single definition and index term 4 8 21–32. It has also agreed on ‘what’ should be measured in DCM research: that is, a minimum data set, which is comprised core data elements (CDE) and a core outcome set (COS).…”

Short-term post-operative complications in 207 patients with multi-level degenerative cervical myelopathy: the effect of surgical approach

“…The decision regarding the optimal patient-specific approach is multifactorial and subject to both patient-related variations and surgeon-related preferences. An international effort has been conducted in order to answer questions regarding the nature of DCM and its optimal treatment, optimising care with treatment guidelines [8][9][10]. The posterior approach is designated to expand the spinal canal posteriorly even when the compressive elements are mostly ventral.…”