The MASCC COG-IMPACT: An unmet needs assessment for cancer-related cognitive impairment impact developed by the Multinational Association of Supportive Care in Cancer

Purpose Cancer-related cognitive impairment (CRCI) can have a profound impact on the lives of cancer survivors. A multitude of subjective and objective assessment tools exist to assess the presence and severity of CRCI. However, no purpose-built tool exists to assess the unmet needs of cancer survivors directly relating to CRCI. This paper details the development and initial validation of the Multinational Association of Supportive Care in Cancer - Unmet Needs Assessment of Cancer-Related Cognitive Impairment Impact (the MASCC COG-IMPACT). Methods A multistep mixed-methods measurement development and validation approach was taken with a strong emphasis on co-design. Qualitative interviews were conducted with cancer survivors ( n = 32) and oncology health professionals ( n = 19), followed by a modified Delphi survey with oncology health professionals ( n = 29). Cognitive interviews with cancer survivors ( n = 22) over two rounds were then conducted to finalise the penultimate version of the unmet needs assessment tool for CRCI. Four-hundred and ninety-one ( n = 491) cancer survivors then completed the MASCC COG-IMPACT and other established measures to inform structural, reliability, validity, acceptability, appropriateness, and feasibility analyses. Results The final MASCC COG-IMPACT is a 55-item and eight subscale tool including two indices: “difficulties” and “unmet needs”. The MASCC COG-IMPACT was found to have strong structural validity, convergent validity, discriminant validity, internal consistency, and test–retest reliability. The MASCC COG-IMPACT was also found to be highly acceptable, appropriate, and feasible. Conclusion The MASCC COG-IMPACT may facilitate optimal care and referral in line with a cancer survivor’s CRCI-related difficulties and unmet needs. The MASCC COG-IMPACT may also be used to explore factors and contributors to CRCI-related difficulties and unmet needs. Overall, the MASCC COG-IMPACT is a highly reliable and valid tool for the assessment of CRCI-related difficulties and unmet needs in both clinical and research settings. The MASCC COG-IMPACT and supporting materials can be accessed on the MASCC webpage or via the MASCC COG-IMPACT Open Science Framework webpage ( https://osf.io/5zc3a/ ).