BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ EBM Supplementary Materials Contents Overview of the Project ................................................................................................................................ 1 Detailed Examples for Recommendation 1 .................................................................................................. 2 Detailed Examples for Recommendation 4 .................................................................................................. 4 Supplementary References ............................................................................................................................ 6 Figure 1: Part of the data extraction form created in REDCap. .................................................................... 7 MEDLINE Search Strategy .......................................................................................................................... 8 Symptom Management Search ........................................................................................................... 18 Alertness Symptom Search ................................................................................................................. 37 Behaviour Symptom Search................................................................................................................ 38 Bowel Incontinence Symptom Search ................................................................................................ 39 Breathing Difficulty Symptom Search ................................................................................................ 39 Constipation Symptom Search ............................................................................................................ 40 Feeding Difficulties Symptom Search ................................................................................................ 41 Sleep Symptom Search ....................................................................................................................... 42 Temperature Regulation Symptom Search ......................................................................................... 43 Tone and Motor Difficulties Symptom Search ................................................................................... 44 Urinary Incontinence Symptom Search .............................................................................................. 45 Overview of the Project Quadrant 3 (Q3) conditions, our area of investigation, are progressive, metabolic, neurological, or chromosomal childhood conditions for which there currently exists no curative treatment. The term Q3 derives from the four-category model for palliative care services developed by the Association for Children’s Palliative Care (ACT; now renamed Together for Short Lives), which categorizes the disease trajectories of children in palliative care into four quadrants (Q1-Q4).[1] Children with Q3 conditions have unknown lifespans and face a high burden of symptoms. Families and healthcare professionals caring for children with Q3 conditions are challenged by the lack of research on symptom management in these conditions. In the context of this lack of evidence, we undertook a scoping review to identify and map the literature with regard to 10 1 Pawliuk C, et al. BMJ EBM 2020;0:1–5. doi: 10.1136/bmjebm-2020-111452 BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ EBM important symptoms that affect children with Q3 conditions, excluding pain and epilepsy/seizures as those symptoms have been well-documented in previous studies.[2] Our goals were to identify evidence for clinical decision-making and to highlight gaps for future research. Detailed Examples for Recommendation 1 Engage the expertise of a librarian throughout the process In our study, creating the search strategy was particularly complex due to the large number of Q3 conditions. As no definitive name for this grouping of conditions exists, it was not possible to search for these conditions as a whole. There also is no single, accepted definitive list of Q3 conditions and often there are multiple names for the same condition. Other researchers may find themselves with similar issues in defining the population or interventions of interest and so a librarian can be helpful in developing a way to delineate the conditions or other key concepts so they can be used as a basis for the search strategy and for developing inclusion/exclusion criteria. In our study, the librarian helped us to construct a single list of Q3 conditions by combining the conditions identified in a longitudinal study that aimed to describe the symptoms of children with 180 Q3 conditions and information from two other lists of life-threatening conditions compiled by experts in the field.[3-5] A list of conditions or a specified area of interest is only a place to start however. Inclusion and exclusion criteria need to be developed and terms appropriate to the databases to be searched must be identified. Many healthcare researchers are somewhat familiar with the indexing systems used in databases such as MEDLINE or CINAHL, but it is unlikely that most researchers understand the systems in the same way as a well-educated health librarian. A systematic search strategy uses both keywords and controlled vocabulary, when the database allows, and aims to balance sensitivity with specificity. Controlled vocabulary refers to pre- 2 Pawliuk C, et al. BMJ EBM 2020;0:1–5. doi: 10.1136/bmjebm-2020-111452 BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ EBM selected terms in databases that are assigned to references so that they can be more easily retrieved without the use of synonyms or alternative spellings. In our study, the librarian began developing the search strategy using Ovid MEDLINE and found that many of these conditions either did not have a MeSH term (i.e., the controlled vocabulary in MEDLINE) or the MeSH term had only been added recently. Without the librarian, we may not have been able to clearly identify these issues and, most importantly, then develop a strategy to ensure we accessed as much of the relevant literature as possible. Thus, we suggest that scoping review teams without a librarian may inadvertently put constraints on their searches that result in limited coverage of the existing literature. Our librarian proposed that to cover all conditions, including those without MeSH terms, we should include all possible names for the conditions in our keywords. In addition, for more recently added MeSH terms she recommended that we use broader terms for that condition and limit them to the years that were not covered by the current MeSH term. These types of suggestions from a librarian can make the process much easier for researchers who are not as familiar with the databases. Our librarian’s proposals resulted in a final MEDLINE search strategy that used 219 MeSH terms and 608 keywords to describe Q3 conditions. The full search was 957 lines long, which is likely to be daunting to many researchers and indeed may not have been possible without the librarian (see below for our full search strategy). The next issue that researchers may face is that each database uses different controlled vocabulary and database commands. Therefore, having a librarian to translate the search into the other databases, after the search is finalized and approved by the full team, is invaluable. This process is time-consuming and greatly benefits from the expertise of a librarian. 3 Pawliuk C, et al. BMJ EBM 2020;0:1–5. doi: 10.1136/bmjebm-2020-111452 BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ EBM Detailed Examples for Recommendation 4 Explore new research management tools, or re-purpose old ones A tool that is useful for the title and abstract screening phase of a scoping review is the web- based software abstrackr.[6] In conducting past reviews, we have used Excel, which required multiple sheets to be created and multiple versions to be tracked and compiled. That process was time-consuming and somewhat complicated, so we sought a different approach to facilitate our scoping review and we found abstrackr to be very helpful. Unlike Excel, abstrackr automatically sets up a double-blind screening and allows each team member to complete as much screening as needed without assigning separate Excel sheets for each set of screeners. Abstrackr also automatically records decisions that can be downloaded to an Excel sheet and records when two screeners do not agree, thus allowing the team to identify and discuss any areas of disagreement. The next phase of a scoping review is a full-text review, which requires a different approach than that provided in abstrackr. Though abstrackr is user-friendly and may be well-liked by a team, it does not allow for full-text upload to facilitate screening of the full texts. Researchers may find that the web and mobile application