Spina Bifida Healthcare Navigator Program

This measure assesses severity of depressive symptoms, including affective and cognitive components of depression. Scores are reported as T-scores standardized to the U.S. general population (mean = 50, standard deviation = 10). Higher T-scores indicate greater depressive symptom severity. Scores are generated using PROMIS computer adaptive testing algorithms; raw item scores are not summed.

The PIH Scale assesses self-management capacity in individuals with chronic health conditions, including knowledge, treatment adherence, symptom monitoring, and management of physical, emotional, and social impacts. The scale includes 12 items, each rated from 0 to 8, producing a total score range of 0-96. Higher scores indicate greater self-management capacity. Item scores are summed to compute the total score; subscale scores (e.g., condition and treatment knowledge, coping, condition management, treatment adherence) may also be examined descriptively but are not required for total score computation.

The AAQ-2 measures psychological inflexibility and experiential avoidance, core constructs within Acceptance and Commitment Therapy. The scale contains 7 items, each rated on a 7-point Likert scale (1-7), yielding a total score range of 7-49. Higher total scores indicate greater psychological inflexibility and experiential avoidance, whereas lower scores indicate greater psychological flexibility. Items are summed after required reverse scoring to produce the total score.

This measure assesses perceived confidence in performing various activities of daily living related to chronic health conditions, such as routine tasks, exercise, and managing activities in challenging situations. Scores are reported as T-scores standardized to a calibration population (mean = 50, standard deviation = 10). Higher T-scores indicate greater self-efficacy in managing daily activities. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.

This measure assesses perceived ability to participate in social roles and activities, including work, family, and community functioning. Scores are reported as T-scores standardized to the U.S. general population (mean = 50, standard deviation = 10). Higher T-scores indicate greater ability to participate in social roles and activities. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.

This measure assesses severity of anxiety symptoms, including fear, worry, and physiological arousal. Scores are reported as T-scores standardized to the U.S. general population (mean = 50, standard deviation = 10). Higher T-scores indicate greater anxiety symptom severity. Scores are generated using PROMIS computer adaptive testing algorithms; raw item scores are not summed.

This measure assesses perceived confidence in the ability to manage and control symptoms associated with chronic health conditions across a variety of settings and situations. Scores are reported as T-scores standardized to a calibration population (mean = 50, standard deviation = 10). Higher T-scores indicate greater self-efficacy in managing symptoms. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.

This measure assesses perceived confidence in managing medication regimens and treatment-related tasks associated with chronic health conditions, including adherence, scheduling, and navigating treatment decisions. Scores are reported as T-scores standardized to a calibration population (mean = 50, standard deviation = 10). Higher T-scores indicate greater self-efficacy in managing medications and treatments. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.

This measure assesses perceived confidence in managing emotional responses related to living with chronic health conditions, including worry, frustration, and discouragement. Scores are reported as T-scores standardized to a calibration population (mean = 50, standard deviation = 10). Higher T-scores indicate greater self-efficacy in managing emotions. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.

This measure assesses perceived confidence in managing social situations and interpersonal interactions related to living with chronic health conditions, including communicating needs and participating in social activities. Scores are reported as T-scores standardized to a calibration population (mean = 50, standard deviation = 10). Higher T-scores indicate greater self-efficacy in managing social interactions. Scores are generated using PROMIS computer adaptive testing algorithms based on item response theory; raw item scores are not summed.