The ISCIPBDS (Version 3.0) was revised in direct response to the suggestions from the clinical and research SCI communities to improve clarity and update the recommendations regarding how to use the ISCIPBDS items. Thus, the focus of the ISCIPBDS (3.0) was to make changes to make the dataset more flexible and optimally useful for a variety of clinical and research settings.
Concerns were raised by the SCI research and clinical communities with regards to longitudinal pain studies that aim to follow one or several specific pain types whether or not these were viewed as the worst pain problem at the initial assessment. To address this issue, each person should be asked to describe one or several of his/her pains experienced within the last 7 days. The pain problems could include one or several of the worst pains as defined by the patient, or one or more pain type of particular interest, depending on a clinical or research question. Each person can also be asked to describe all pain types present, e.g. neuropathic, musculoskeletal, visceral and other pain. The selection of pain problem(s) may also be determined based on the clinical needs or research question.
Additionally, there were also questions regarding how to best use the data set when there is a focus on a particular type of pain and how this specific pain problem―rather than overall pain―impacts activities, mood or sleep. We updated the recommendations and suggest that the 3 interference items can be assessed for individual pains or for overall pain. To ensure comparability across studies, even when a user allows respondents to rate pain interference for more than one pain problem, we recommend that respondents always also be invited to rate overall pain interference. Although validity data regarding the use of the pain interference items for specific individual pain problems in a person who experiences several concomitant pains are currently lacking, there may be situations where there is a clinical or research interest in assessing pain interference separately for individual pain problems.
The ISCIPBDS committee addressed these concerns and provided additional improvement and clarity.
The structure or intent of the ISCIPBDS (3.0) was not significantly changed from previous versions. The revised version presented in this paper focuses on the same domains as the original version (1) (i.e., pain classification, pain severity, and pain interference). Like previous versions, the ISCIPBDS (3.0) was designed to collect essential and clinically relevant pain information in the daily practice of healthcare professionals with expertise in SCI. Another goal was to ensure that the evaluation was logistically feasible across various clinical and research settings and countries, including in developing countries. The ISCIPBDS (3.0) should ideally be used in conjunction with the International Standards for Neurological Classification of SCI (ISNCSCI), including the ASIA Impairment Scale, the neurological level of injury, and the associated dermatomal map (8) to determine the extent of neurological injury and to determine the location of pain relative to injury (i.e., above, at, and below). An optional pain drawing that is compatible with the ISNCSCI was added to the data set to facilitate the integration of neurological data and pain classification. This concept will be further developed in the next version of the ISCIPEDS.
To further improve clarity and provide guidance with respect to the utility of the ISCIPBDS, we added the treatment categories with check boxes consistent with the ISCIPEDS and much more detail and clarification regarding the treatment categories in the syllabus. In addition, we added several new training cases to the syllabus where the data set was used in different ways to provide example for how the data set could be used for different purposes.
In summary, the ISCIPBDS (Version 3.0) is modified to improve its clarity and utility for evaluating pain globally across different settings. With respect to research and specialized pain clinics that manage chronic pain associated with SCI, bedside and/or quantitative sensory assessments would add diagnostic precision. Bedside sensory assessment is included in the ISCIPEDS and will be further improved upon in forthcoming versions.
The utility of the revised ISCIPBDS is increased by further clarification regarding its use and should be more clinically useful with the addition of a pain drawing. The addition of the list of treatment categories that are found in the ISCIPEDS should facilitate the collection of more detailed treatment information. This revision is consistent with our intention to continue to update and improve the ISCIPBDS. Our working group (through the corresponding author) welcomes additional suggestions and comments for further improvement.
To maximize the utility of this new version we encourage users to download the Syllabus that is freely available on the ISCoS website (https://www.iscos.org.uk/international-sci-data-sets) which includes detailed information and explanations for each variable.