HOBSCOTCH Self-Management Program Improves Quality of Life in Epilepsy

Barbara C. Jobst, MD, PhD, FAAN, FAES

The findings of a recent study suggest that a home-based self-management and cognitive training, dubbed the HOBSCOTCH program, is effective in improving quality of life among individuals with epilepsy.¹

Ultimately, those who completed the in-person HOBSTOTCH intervention experienced a 12.4-point improvement in quality-of-life scores compared with controls (P <.001), with pairwise comparisons showing a 6.2-point treatment effect for subjective cognition in the in-person group (P <.001). The analysis included 85 of 108 recruited participants.

The virtual portion of the intervention demonstrated feasibility but did not significantly improve outcomes compared to controls. Within-group analysis found improvements in QOL for both the virtual and in-person groups. Although this assessment was conducted prior to the COVID-19 pandemic, study investigator Barbara C. Jobst, MD, PhD, FAAN, FAES, and colleagues wrote that “the distance-delivered intervention may be particularly well-suited for the current environment,” adding that “future research will explore modifications designed to improve the efficacy of [the virtual program] and the sustainability of HOBSCOTCH’s treatment effect.”

Notably, there were no meaningful differences between groups identified in objective cognition or healthcare utilization at any time points in the study, and the quality-of-life treatment effect did lessen by the 6-month mark.

The HOBSCOTCH program consists of 8 sessions to address cognitive impairment and quality of life that last between 45-60 minutes, with a goal set for each session.² Developed by a multidisciplinary workgroup at Dartmouth-Hitchcock Medical Center, including Jobst and Tracie Caller, MD, MPH, FAAN, the program is commonly used by the he HOBSCOTCH Institute for Cognitive Health & Well-Being, which was founded in 2020 by Jobst and Elaine T. Kiriakopoulos, MD, MSc.^2,3 Previously, the program has been shown to be effective for adults with epilepsy who are experiencing memory problems—those with both controlled and uncontrolled seizures.

This analysis included participants from epilepsy centers in 4 states who were block-randomized into 3 groups: in-person HOBSCOTCH (H-IP), virtual HOBSCOTCH (H-V), and waitlist control. Outcome measures were assessed at baseline, 3 months, and 6 months, and the intervention groups received long-term follow-up at 9 and 12 months. The patients in the study had a mean age at baseline of 47.5 years (SD, 11.5; 68% women).

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Previously, a 2016 work from Caller et al in a cohort of 66 individuals with epilepsy who were randomized to receive 8 weeks of HOBSCOTCH, with or without additional working memory training on a commercial gaming device, or control, showed significant improvements in quality of life scores on the Quality of Life in Epilepsy scale (Intervention groups: 5 [SE, 2.2]; controls: − 2.2 [SE, 2.7]; P = .05). The treatment effect in that study was 7.1 points. When subscales of the scale were analyzed, each of the subscales showed a trend towards improvement in the intervention group whereas controls declined on all measures, with significant improvement in the subscores of seizure worry (P = .04) and energy (P = .04).⁴

As the medical field continues to push for more holistic approaches to patients with chronic diseases, the HOBSCOTCH program is among several efforts to help address quality of life challenges specifically among patients with epilepsy. In December 2021, at the 2021 American Epilepsy Society (AES) Annual Meeting, results were presented suggesting that a neuropalliative care (NPC) tactic for those with drug-resistant epilepsy may help to assist this population in coping with life with seizures.⁵

Ultimately, those data included 20 adults with drug-resistant epilepsy and a mean age of 39 years (range, 27-61; SD, 9.4) who volunteered to complete a 2-hour interview about their identity, perceptions, experiences, and their needs in terms of living with drug-resistant epilepsy (mean, 5.9 antiseizure medications; range, 2-14; SD, 2.8) for a mean duration of 16 years (range, 3-42; SD, 11.1). Patients were read a description of NPC and asked if they thought it had potential to play a role in their care. Also completed were 2 quality of life questionnaires, the Quality of Life in Epilepsy-10 (QOLIE-10) and the McGill Quality of Life (MQOL).

Four patients’ responses revealed difficulties with coping, indicating issues that could be addressed by NPC, namely a lack of planning for the future, a need for both social and spiritual support, and communication gaps with epilepsy providers. Only 2 participants could provide a description of NPC, both of which were focused on aging and dying. Despite their different time scales of 4 weeks versus 2 days, analyses of the QOLIE-10 and the MQOL for 19 patients (1 lost to follow-up) suggested a strong correlation between the 2 questionnaires (R2 = 0.68). A high rate of existential distress was reported on the MQOL by half of respondents when queried about life progress and self-worth. The cohort reported comorbidities including depression (n = 14; 70%), anxiety (n = 12; 60%), and memory problems (n = 18; 90%).⁵

Additionally, another assessment, a 2022 multicenter cross-sectional study from Shah et al, provided evidence that a novel 2-item health-related quality of life prompt, dubbed the Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2), is valid in a recent, with investigators concluding the prompt is suitable for use in the clinical setting.⁶

The final study sample included a total of 154 caregivers of children with epilepsy, all of whom were English speakers and had a mean age of 9.7 years (range, 0.5-18.0). The PELHS-QOL-2 correlated with the 4 comparator instruments, the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55), the Pediatric Epilepsy Side Effects Questionnaire, the Global Quality of Life in Childhood Epilepsy Questionnaire, and the Global Assessment of Severity of Epilepsy.

Shah et al observed medium to large correlations between the PELHS-QOL-2 and the QOLCE-55 (n = 132; ρ = .55; P <.0001), and the GASE (n = 144; ρ = .52, P <.0001), and a large correlation between the PELHS-QOL-Medications and PESQ (n = 118; ρ = –.56; P <.0001). PELHS-QOL-Seizures was significantly associated with all subscores of the QOLCE-55, and PELHS-QOL-Medication was significantly associated with all PESQ subscores, excluding weight.⁶

REFERENCES
1. Streltzov NA, Schmidt S, Schommer L, et al. Effectiveness of a Self-Management Program to Improve Cognition and Quality of Life in Epilepsy: A Pragmatic, Randomized, Multicenter Trial. Neurology. Published online April 06, 2022. doi:10.1212/WNL.0000000000200346.
2. Patient Support and Education: Home Based Self-management and Cognitive Training Changes Lives (HOBSCOTCH). Dartmouth Health website. Accessed April 18, 2022. https://www.dartmouth-hitchcock.org/epilepsy/hobscotch
3. About Us: Program Development. HOBSCOTCH Institute website. Accessed April 18, 2022. https://www.hobscotch.org/story
4. Caller TA, Ferguson RJ, Roth RM. A cognitive behavioral intervention (HOBSCOTCH) improves quality of life and attention in epilepsy. Epilepsy Behav. 2016;57:111-117. doi:10.1016/j.yebeh.2016.01.024
5. Hixon A, Vaughan C, Baca C, et al. Neuropalliative care for person with drug resistant epilepsy – A needs assessment. Presented at AES2021; December 3-7, 2021; Chicago, IL and Virtual. Abstract 2.099
6. Shah PD, Yun M, Wu A. Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2): A novel health-related quality of life prompt for children with epilepsy. Epilepsia. 2022;63(3):672-685. doi:10.1111/epi.17156