Burden and preparedness of care partners of people living with amyotrophic lateral sclerosis at home in Korea: A care partner survey

Sun Young Lee MD, PhD, Shin Hye Yoo MD, PhD, Belong Cho MD, PhD, Kye Hyung Kim MD, PhD, Min Seoul Jang MD, MS, Jeongmi Shin MD, MS, Inyoung Hwang MD, MS, Seok-Jin Choi MD, MS, Jung-Joon Sung MD, PhD, Min Sun Kim MD, MS

Introduction/Aims The care burden of people living with amyotrophic lateral sclerosis (pALS) increases with disease progression. This study aimed to investigate the home care status and preparedness of care partners of pALS (cALS) in Korea. Methods An online survey was conducted with family care partners of patients diagnosed with ALS for over 1?year in 2022. The data collected included care time, depression evaluated using the patient health questionnaire-9 (PHQ-9), preparedness for caregiving scale (PCS), and caregiver competence scale (CCS). Results were compared based on whether the pALS underwent a tracheostomy or not. Results Ninety-eight cALS of 98 pALS participated in the study, of whom 59 pALS had undergone tracheostomy. Among the cALS, 60.2% were spouses, and 34.7% were children. The cALS took care of the patients for 13 (8–20) hours/day (median, interquartile range [IQR]) on weekdays and 15 (10–24) h/day on weekends. Among the cALS, 91.8% were depressed, and 28.6% had severe depression. The median (IQR) PCS and CCS scores were low (11/32 (8–15) and 8/20 (8–11), respectively), and both were lower in those caring for patients without than with tracheostomy (p<.001 and p<.02, respectively). Most cALS (77.6%) wished to continue caring for their pALS at home. Discussion Family care partners of pALS spend more than half of each day caring for patients and are often depressed. Most cALS preferred providing care at home, but felt ill-prepared. Designing home-based medical care is necessary for pALS to thrive at home.

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