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Information needs are one of the most prevalent unmet supportive care needs of those living with cancer, including patients and their informal caregivers. Understanding how existing questionnaires for evaluating information needs have been developed is important for guiding appropriate use and informing future research. A literature review examining how information needs assessment questionnaires for use in the cancer context have been developed, with a specific focus on how questionnaire items have been identified, does not exist.
This scoping review will examine how questionnaires for assessing the information needs of those living with cancer have been developed with special focus on how patients, informal caregivers, and health care professionals have been involved in the selection and identification of questionnaire items.
This review will include published studies describing the development and validation of information needs assessment questionnaires for use in the oncology context. MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, the Cochrane Database of Systematic Reviews, and PsycInfo will be searched. Articles published at any point up to the date of the search will be eligible for inclusion. One person will screen titles and abstracts, and 2 people will screen and extract data from full-text articles.
Results are expected to be available in early 2023. Summary tables and a narrative summary will be used to describe results.
This scoping review will assist in identifying appropriate information needs assessment tools to incorporate into clinical and research contexts in oncology. It will also identify if additional information needs assessment tools are needed.
PRR1-10.2196/35639
Information needs are one of the most commonly unmet supportive care needs of patients and informal caregivers (ie, friends and family who provide unpaid support to patients) [
Information needs of patients with cancer and their informal caregivers have been assessed in multiple studies, using validated questionnaires [
One important consideration when selecting a questionnaire is how the questionnaire items were identified. Regarding information needs, at least on a theoretical level, an important distinction is between normative and expressed information needs [
Normative information needs may, at least to some degree, be influenced by the pressures that health care professionals face in their respective clinical, research, and administrative roles. On the other hand, expressed information needs may be more likely to reflect day-to-day challenges of those living with cancer, as they continue to pursue their prediagnosis value-based goals [
A preliminary search of MEDLINE, the Cochrane Database of Systematic Reviews,
This review will use a scoping review approach. A scoping review is the most appropriate method for examining how information needs assessment tools in the oncology context have been developed. Scoping reviews are a rigorous approach to knowledge synthesis and are also flexible and can be used to address a number of different types of objectives, including mapping the literature and describing how research has been conducted [
The objective of this scoping review is to examine how the existing tools for assessing information needs of patients with cancer and their friends and family have been developed, including how they have incorporated expressed information needs. This will be achieved by systematically reviewing the literature to comprehensively identify information needs assessment tools developed for the cancer context and then examining how they have been developed and validated. The rationale for the development of each questionnaire as well as the processes for identifying, finalizing, and validating the questionnaire will be described. Regarding expressed information needs, the role of the patients and informal caregivers in identifying potential questions and needs domains as well as determining the final version of the assessment tool will be summarized.
The objectives of this review will be achieved by systematically reviewing the literature to answer the following questions:
What questionnaires have been created and validated for evaluating the information needs of people living with cancer?
What is the stated purpose of each questionnaire?
What cancer contexts (ie, cancer type, treatment intent, and population) have these tools been developed for?
How were the questionnaires developed?
How were potential questionnaire items identified and finalized?
How were the questionnaires validated?
How were patients, health care professionals, and informal caregivers involved in the process of developing the questionnaires, including in the identification and selection of questionnaire items?
How were test and measurement guidelines (eg, COSMIN checklist [
The proposed scoping review will be conducted in accordance with the JBI methodology for scoping reviews [
This scoping review is focused on characterizing the development of validated assessment tools rather than characterizing differences in measured outcomes in certain populations. As such, the “participants” aspect of the scoping review eligibility criteria is not applicable.
This scoping review will examine how information needs assessment tools have been developed, including the motivation for the development, the steps in the development, and the steps taken to include the expressed information needs of health care recipients.
This scoping review will include the literature relevant to the cancer context, both in clinical and research settings. It will include published reports describing the development of tools designed for patients and/or informal caregivers (ie, friends and family). Literature specific to the pediatric population will be excluded. Non–English-language studies will be excluded.
This scoping review will consider any report related to the development of information needs questionnaires for patients with cancer published in peer-reviewed journals. Reports will include those that directly describe and report on their development, including methods of identifying questionnaire items as well as testing of psychometric properties. Additionally, reports cited as rational for selection of certain items will be included. As a result, this review will include a wide range of reports including but not limited to the following: protocols of both experimental and quasi-experimental study designs such as randomized controlled trials, nonrandomized controlled trials, before and after studies, and interrupted time series studies; analytical observational studies including prospective and retrospective cohort studies, case-control studies, and analytical cross-sectional studies; descriptive observational study designs including case series, individual case reports, and descriptive cross-sectional studies; experimental studies; reports on preliminary results and works in progress; qualitative studies; systematic reviews; and peer-reviewed essays and opinion papers.
The search strategy will aim to locate both published and unpublished studies related to the development of information needs assessment tools for the oncology context. An initial limited search of MEDLINE (Ovid) and CINAHL Plus with Full Text was undertaken to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles and the index terms used to describe the articles were used, in collaboration with a health sciences librarian, to develop a full search strategy for MEDLINE (Ovid) and CINAHL (
Studies published in English will be included. Non–English-language studies will not be included as the researchers are primarily interested in learning what tools are available for use in their respective English-based clinical and research practices. Studies published since the beginning of the database will be included, as there is no reason to exclude older studies.
As appropriate, authors of reports will be contacted to determine if missing or additional data are available in peer-reviewed publications. Grey literature, and non–peer-reviewed reports, including unpublished studies or protocols, will not be excluded from this review. Inclusion and exclusion criteria are summarized in
Reports indexed up to the date when article searching begins (ie, post completion of blind protocol peer review).
Reports describing the development or use of information needs assessment questionnaires, specifically for adults living with cancer, including patients and informal caregivers.
Reports related to any type of malignancy, including a single or multiple types.
Reports related to any point in the cancer journey, from diagnosis to surveillance or palliation.
Any geographic location.
Non–peer-reviewed literature.
Non–English-language literature.
Reports related to the development of multidimensional needs assessment tools (ie, not focused on information needs).
Reports related to tools designed specifically for the pediatric population, including adult informal caregivers of patients with pediatric cancer.
Reports related to assessing information needs regarding cancer screening.
Following the initial database search, all identified citations will be collated and uploaded into Covidence (Veritas Health Innovation), and duplicates will be removed. Titles and abstracts will then be screened by 1 independent reviewer for assessment against the inclusion criteria for the review [
Data will be extracted from papers identified through the search strategy by 2 independent reviewers, using a data extraction tool developed by the reviewers. The data extracted will include specific details about the participants, concept, context, study methods, and key findings relevant to the review questions.
A draft extraction form is provided (
The draft data extraction tool will not be piloted prior to data extraction. However, the extraction tool is expected to be modified and revised during the process of extracting data to capture relevant data, including data that emerges as important during the course of data extraction. Modifications to the extraction tool will be detailed in the scoping review. Any disagreements that arise between the reviewers will be resolved through discussion or via additional independent reviewers.
Of note, to ensure that the number of information needs assessment tools reviewed in this study is as comprehensive as possible, the titles and abstracts identified through the initial database search will also be reviewed to identify studies reporting on quantitative assessments of information needs using validated questionnaires. Screening for these articles will be accomplished by a single reviewer who will also review the full text of these studies, including their references lists, to identify additional reports potentially meeting the inclusion criteria of this scoping review. These articles will be combined with other articles selected for full-text review to meet inclusion criteria, and from that point, they will be treated equally with articles identified directly through the database search. The number of articles identified through this process will be clearly demarcated in the PRISMA-ScR flow diagram.
Activities related to this scoping review began in December 2021 with the drafting and submission of this protocol for peer review and publication. Results are expected to be available in early 2023 and will be reported in accordance with the PRISMA-ScR reporting guidelines [
Based on the preliminary search conducted as part of the development of this protocol, the resulting scoping review will be the first to systematically evaluate the development of information needs assessment questionnaires for use in the oncology context. Importantly, it will characterize how the expressed needs of those living with cancer have been incorporated into the existing information needs assessment tools. As such, this review has the potential to impact both clinical and research practices in oncology, including but not limited to the development of more rigorous patient-reported measures in oncology settings.
In the clinical setting, this review will be helpful in guiding tool selection for capturing information needs in routine practices. Screening for psychosocial distress as part of the routine oncology clinical practice is considered standard of care by many professional organizations such as the American Society of Clinical Oncology [
From a research perspective, this review is expected to support researchers in identifying appropriate tools for capturing information needs–related data and facilitating awareness of the limitations of the selected tools [
Despite identifying what appears to be an adequate body of literature to support this review, it is not clear whether sufficient details will be able to be identified in the existing peer-reviewed literature to adequately address the research questions. Although the rate of publication of protocols is increasing [
Information needs are one of the most commonly unmet supportive care needs of those living with cancer [
Sample search strategies.
Data extraction tool.
Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews
patient-reported outcome measure
The authors would like to acknowledge Dr Alix Hayden, nursing librarian at the University of Calgary, for assisting in the development of methods and search strategy for this protocol.
This review will contribute toward the completion of a doctoral degree from the Faculty of Nursing, University of Calgary for the first author (MT).
This project was supported in part by scholarship funding provided by the Faculty of Nursing and the Department of Graduate Studies at the University of Calgary as well as an unrestricted research grant from Knight Therapeutics awarded to the lead author.
None declared.