HOBSCOTCH-YOUTH and Young Adults

The QOLIE-10 (Quality of Life in Epilepsy Inventory-10) is a validated 10-item, patient-reported questionnaire designed to assess health-related quality of life in adults and adolescents with epilepsy, focusing on core aspects such as seizure worries, daily activities, mood, energy, and medication effects. Numerical responses are summed and divided by the total number of items answered with lower scores reflecting better quality of life or fewer perceived difficulties.

The Cognitive Function sub-scale of the NeuroQOL is a brief validated tool developed by the NIH for use in patients with neurological disease. Scores range from 8 to 40, with a higher score indicating better reported cognitive functioning.

The Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48) is a validated instrument designed to measure health-related quality of life (HRQOL) in adolescents aged 11-18 years with epilepsy. It consists of 8 domains and is scored based on a 5-point Likert scale response from 1 - 5 (very poor - excellent). Higher scores reflect better functioning or quality of life.

The Zarit Burden Interview is a 22-item questionnaire designed to measure the extent to which a caregiver perceives his or her level of burden as a result of caring for a person with a particular diagnosis. A 5-point Likert scale is used with a higher score indicating a greater level of perceived burden.

The AESMMI-65 is a 65-item validated scale that assesses use of epilepsy self-management practices. Scores range from 65 to 325, with a higher score indicating more frequent use of self-management strategies.

The EMQ-R is a validated self-administered, subjective measure designed to assess memory in everyday life. It consists of 13 items scored on a 5-point Likert scale from 0 - 4 with total scores ranging from 0 - 52. Higher scores indicate a greater frequency of self-reported everyday memory failures.

The Epilepsy Self-Stigma Scale is an eight-item self-report questionnaire designed to measure the extent to which people with epilepsy internalize negative societal attitudes toward their condition. Each item is rated on a 5-point (0- 4) Likert scale and summed with higher scores and a higher sum indicating higher perceived self-stigma.

The PHQ-8 is a validated self-report, eight-item questionnaire measuring depressive symptom frequency over the past two weeks using a 4-point Likert scale. Scores are summed with higher scores indicating poorer mood and greater self-report of depression.

The Brief Epilepsy Anxiety Survey Instrument (brEASI) is an 8 item, self-administered, validated questionnaire designed to screen for anxiety disorders in people with epilepsy. It consists of 8 items scored on a 4-point Likert scale (0 - 3) with higher scores and a higher sum of all scores indicating greater degrees of anxiety.

The Personal Impact of Epilepsy Scale (PIES) is a validated 25-item self-reported questionnaire developed to measure the overall impact of epilepsy on a person's life, with specific focus on seizures, medication side effects, comorbidities, and overall quality of life (QOL). Items are scored using a 5-point Likert scale (0 - 4) with higher scores and a higher total sum indicating a greater perceived negative personal impact of epilepsy.

The BRIEF-SR is a standardized self-report of executive functioning designed for ages 11 to 18 years measuring an adolescent's perspective on cognitive, emotional, and behavioral self-regulation in everyday life. It consists of 80 items rated by the adolescent using a 3-point Likert scale (1-never, 2-sometimes, 3-often). Raw scores are summed and converted to a T score (50/10) with a higher score indicating greater difficulty in executive functioning.

The Behavior Rating Inventory of Executive Function - Parent Form (BRIEF-Parent) is a self-report questionnaire completed by a parent or guardian to assess executive function in their child. It contains 86 items scored by the parent using a 3-point Likert scale (1-Never, 2-Sometimes, 3-Often). Raw scores are summed and converted to a T-Score (50/10) with higher scores indicating greater perceived difficulties with executive function.

The Affiliate Stigma Scale is a validated instrument designed to measure the extent of self-stigmatization experienced by associates (e.g., family members, caregivers) of someone with a stigmatized disability. It contains 22 items using a 4-point Likert scale (1 - 4) with higher scores and total scores indicating a greater degree of perceived self-stigma.

YAWE and YWE will self-report their seizure activity, Yes or No, using a smartphone app(lication). The smart phone app was developed by the HOBSCOTH Institute at Dartmouth and is used clinically in the HOBSCOTCH program.

YAWE and YWE will self-report their medication adherence activity, Yes or No, using a smartphone app(lication). The smart phone app was developed by the HOBSCOTH Institute at Dartmouth and is used clinically in the HOBSCOTCH program.

YAWE and YWE will self-report their use of memory strategies, Yes or No, using a smartphone app(lication). The smart phone app was developed by the HOBSCOTH Institute at Dartmouth and is used clinically in the HOBSCOTCH program.

YAWE and YWE will give self-reports of well-being on a 5-point Likert scale (Great, Good, Average, Poor, Very Poor) using a smartphone app(lication). The smart phone app was developed by the HOBSCOTH Institute at Dartmouth and is used clinically in the HOBSCOTCH program.

The Participant Satisfaction Survey was developed through the original HOBSCOTH program and is used in clinical practice for quality improvement. It has been modified to address YAWE, YWE and Parent's satisfaction as a result or participating in this study and contains 9 items scored on a 5- point Likert scale with a higher score indicating greater satisfaction with the program. There is also an open-ended portion to give additional feedback.

CollaboRATE is a brief, 3 item patient-reported measure of shared decision making, namely the perception of being informed and then involved in decision-making steps. A 10-point anchor scale from 0 (no effort was made) to 9 (every effort was made) with higher scores representing a greater perception of a shared decision-making effort.

CollaboRATE-parent is a brief, 3 item parent-reported measure of shared decision making, namely the perception of being informed and then involved in decision-making steps for their child. A 10-point anchor scale from 0 (no effort was made) to 9 (every effort was made) with higher scores representing a greater perception of a shared decision-making effort

Homework assignments are given each week in which participants are asked to think about solutions using the Problem Solving Therapy taught in the program. Compliance is measured by Yes (completed homework assignment) or No (did not complete homework assignment).

(Quality of Life in Epilepsy Inventory - Adolescents - 48)