The Development and Psychometric Evaluation of the SIRS: A Social Isolation Risk Scale for Survivors of Head and Neck Cancer

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Head and neck cancer (HNC) survivors have unique survivorship challenges (e.g., facial disfigurement), which often lead to social isolation. To address social isolation and prevent associated negative health outcomes, it is critical to identify HNC survivors at risk for social isolation. Currently, these efforts are hampered by a lack of screening tools that are both sufficiently brief to be used routinely in a fast-paced clinic and capture the risk factors unique to HNC that potentiate social isolation. Hence, the overall purpose of this proposal is to develop and conduct a preliminary psychometric evaluation of the Social Isolation Risk Scale (SIRS), a brief screening tool to identify HNC survivors at risk for social isolation. Aim 1: Develop the SIRS: Item pool generation (1a): Our team will use inductive and deductive methods to generate a pool of potential scale items (i.e., reasons why HNC survivors socially isolate, general social isolation risk factors) through discussions among HNC survivor members of our advisory board, and experts in HNC, social isolation, and measurement, as well as a literature review. Item pool refinement (1b): We will refine the item pool through 1-on-1 interviews with N = 30 socially isolated HNC survivors. We will solicit feedback on item relevance (quantitative scale 1 to 5, higher values indicate more relevance), addition/deletion of items (items will be added/deleted if 70% of those asked endorse addition/deletion), and suggestions for alternative wording via qualitative feedback. At the conclusion of 1b, we will have a ~16-item SIRS (~8 items related to non-physical social isolation risk factors and ~8 items related to physical social isolation risk factors), to undergo preliminary psychometric evaluation during Aim 2b. Aim 2: Administer (2a) and conduct preliminary psychometric evaluation (2b) of the SIRS. 2a. We will conduct a 3-month longitudinal study, in which we will administer the SIRS, a demographic survey, and a battery of validated assessments of social isolation, general distress, loneliness, social connectedness, social desirability, and HNC-related quality of life, to N=130 HNC survivors at their 6-month (T1) and 9-month (T2) post-treatment completion visits. 2b. We will perform preliminary psychometric analyses of the SIRS, evaluating both items’ properties and SIRS’ properties, as well as perform a factor analysis. Based on a priori established guidelines, we will select a final set of items to retain for the SIRS, with the goal of ~10 items in total (~5 items related to physical risk factors and ~5 items related to non- physical risk factors). This project is (a) significant, as it will improve the long-term health of a substantial (at least 36%) subset of HNC survivors and will serve as a model for identifying and preventing social isolation in other at-risk groups; and (b) innovative, as it approaches the problem from a different perspective- focusing on the root cause (i.e., social isolation) of negative outcomes, rather than the negative outcomes themselves.