Degenerative cervical myelopathy: what information is required to make an informed management decision?

To develop and user-test a patient decision aid for people with degenerative cervical myelopathy (DCM) who are considering surgery.

This mixed-methods study describes the development of a patient decision aid. A draft decision aid was developed by a multidisciplinary steering group (including various types of health professionals and researchers) informed by the best available evidence and existing patient decision aids. People with DCM and health professionals who manage people with DCM were interviewed. Participants were recruited through social media and the steering group’s network. Semi-structured interviews and questionnaires were used to gather feedback, refine the decision aid and assess acceptability. An iterative cycle of interviews, refining the aid according to feedback and further interviews, was used. Interviews were analysed using reflexive thematic analysis.

We conducted 32 interviews; 19 people with DCM and 13 health professionals who manage people with DCM (one orthopaedic surgeon, four neurosurgeons, two neurologists, two physiotherapists, one general practitioner, and three others). Participants were from 9 countries (Australia, New Zealand, United Kingdom, Ireland, Canada, USA, Switzerland, Sweden, and Cyprus). Most people with DCM and health professionals involved in their management rated the decision aid’s acceptability as good-to-excellent. Health professionals and people with DCM agreed with most aspects of the decision aid (e.g., defining DCM, management recommendations, potential benefits and harms, questions to consider asking a health professional).

Our patient decision aid was rated as an acceptable tool by people with DCM and health professionals who are involved in the management of DCM. A larger study testing potential benefits of the decision aid in a clinical setting is currently being planned.

A patient decision aid for people with DCM considering surgery could promote shared decision making with health professionals and improve treatment outcomes. Development of the decision could be part of the important steps needed to increase awareness of the condition and better align management with evidence-based guidelines.