The SNAP Tool for Head and Neck Cancer Survivor-Caregiver Dyads

Caregivers report the extent to which caregiving impacts time, responsibilities, and strain utilizing the Zarit Burden Inventory. Caregivers rate each item on a 5-point Likert scale (0=Never to 4=Always); higher scores (0-16) indicate greater burden. An increase in change from baseline to 6 week, 6 months or 9 months follow up visit would increased caregiver distress; likewise a decrease in change would indicate reduced caregiver distress. Cronbach's alphas in previous research range from 0.81-0.83.

Symptom burden in survivors will be assessed with the MD Anderson Symptom Inventory-Head and Neck Cancer Module (MDASI-HN) The MDASI -HN includes 13 core items and an additional 9 head and neck cancer module items which calculates a total score of symptom severity. The MDASI assesses the severity of symptoms at their worst in the last 24 hours on a 0-10 Numeric Rating Scale, with 0 being "not present" and 10 being "as bad as you can imagine." Core items and module symptom items are averaged into a mean module severity. A higher score always indicates an increase in severity. A decrease in change from baseline to 9-month assessment indicates improvement of symptoms. Cronbach's alphas in previous research range from 0.88-0.92.

Depression in Caregivers will be assessed with the PROMIS Depression- SF v1.0 form 8A. Respondents are asked how often in the past 7 days they have experienced specific depression symptoms, using a 5-point ordinal rating scale whereby 1= "Never," 5="Always." A higher score indicates higher depression. Raw score totals are converted to an item response theory-based T-scores. The T-score rescales the raw score into a standardized score with a mean of 50 and a standard deviation (SD) of 10 with a range of 38.2 to 81.3. Therefore, a person with a T-score of 40 is one SD below the mean. A decrease in change from baseline to 9 month assessment indicates reduced depression. Cronbach's alphas in previous research = 0.97 for anxiety and depression.

Anxiety in Caregivers will be assessed with the PROMIS Short Form v1.0 - Anxiety 8a. Respondents are asked how often in the past 7 days they have experienced specific anxiety symptoms, using a 5-point ordinal rating scale whereby 1= "Never," 5="Always." A higher score indicates higher anxiety. Raw score totals are converted to an item response theory-based T-scores. The T-score rescales the raw score into a standardized score with a mean of 50 and a standard deviation (SD) of 10 with a range of 38.2 to 81.3. Therefore, a person with a T-score of 40 is one SD below the mean. A decrease in change from baseline to 9 month assessment indicates reduced anxiety. Cronbach's alphas in previous research = 0.97 for anxiety and depression.

Depression in Survivors will be assessed with the PROMIS Depression- SF v1.0 form 8A . Respondents are asked how often in the past 7 days they have experienced specific depression symptoms, using a 5-point ordinal rating scale whereby 1= "Never," 5="Always." A higher score indicates higher depression. Raw score totals are converted to an item response theory-based T-scores. The T-score rescales the raw score into a standardized score with a mean of 50 and a standard deviation (SD) of 10 with a range of 38.2 to 81.3. Therefore, a person with a T-score of 40 is one SD below the mean. A decrease in change from baseline to 9 month assessment indicates reduced depression. Cronbach's alphas in previous research = 0.97 for anxiety and depression.

Anxiety in Survivors will be assessed with the PROMIS Short Form v1.0 - Anxiety 8a. Respondents are asked how often in the past 7 days they have experienced specific anxiety symptoms, using a 5-point ordinal rating scale whereby 1= "Never," 5="Always." A higher score indicates higher anxiety. Raw score totals are converted to an item response theory-based T-scores. The T-score rescales the raw score into a standardized score with a mean of 50 and a standard deviation (SD) of 10 with a range of 38.2 to 81.3. Therefore, a person with a T-score of 40 is one SD below the mean. A decrease in change from baseline to 9 month assessment indicates reduced anxiety. Cronbach's alphas in previous research = 0.97 for anxiety and depression.

Healthcare utilization (HCU) in survivors and caregivers is the receipt of recommended care assessed by self-report and chart review. HCU will be evaluated based on the number of completed referrals dived by the number of recommended medical or supportive care referrals. We will use count-based regression to model the logarithm of the expected number of completed referrals as a function of treatment group with an offset equal to the logarithm of the total number of patient referrals, and baseline covariate adjustment. Based on the fitted model, we will construct point and interval estimates of the rate of HCU for SNAP and UC (Usual Care) dyads. The significance of the intervention on HCU will be based on the statistical significance of the treatment effect parameter. Primary analyses will use chart review data and additional exploratory analyses will use self-reported data.

Unmet needs will be assessed by the Cancer Survivor Partner Unmet Needs (CaSPUN) instrument. Respondents rate 30 items concerning whether they currently needed help with comprehensive care, information, quality of life, existential survivorship and relationship issues (yes or no). Total number of unmet needs will be calculated. Cronbach's alphas in previous research range from 0.93-0.94.

Unmet needs will be assessed by the Cancer Survivor Unmet Needs (CaSUN) instrument. Respondents rate 30 items concerning whether they currently needed help with comprehensive care, information, quality of life, existential survivorship and relationship issues (yes or no). Total number of unmet needs will be calculated. Cronbach's alphas in previous research range from 0.93-0.94.

Caregiver self-efficacy will be assessed with the 21-item Caregiver Inventory measure. Participants will rate the extent to which they feel confident in their abilities as a caregiver to manage medical information, care for their loved one with cancer, manage emotions and care for oneself on a 9 point response scale from not at all confident to totally confident. Higher scores reflect higher self-efficacy (Cronbach's alpha in previous research = 0.91).

Survivor self-efficacy will be assessed with the 12-item Communication and Attitudinal Self-Efficacy Scale (CASE) instrument. Participants will rate the extent to which they feel confident in understanding and participating in their care, maintaining a positive attitude, and seeking and obtaining information on a 4 point response scale from Strongly Disagree (1) to Strongly Agree (4). Higher scores reflect higher self-efficacy.