Treatment needs of dementia with Lewy bodies according to patients, caregivers, and physicians: a cross-sectional, observational, questionnaire-based study in Japan

Abstract

Background Understanding the treatment needs of patients with dementia with Lewy bodies (DLB) is essential to develop treatment strategies. We examined the treatment needs of patients with DLB and their caregivers and the extent to which the attending physicians understand these treatment needs. Methods This was a cross-sectional, observational study conducted using questionnaires for patients, caregivers, and physicians. The study participants included patients, their caregivers, and their attending physicians who were experts in DLB. Fifty-two symptoms that are frequent and clinically important in DLB were pre-selected and classified into seven symptom domains. Treatment needs of patients and caregivers were defined as “symptom that causes them most distress,” and the frequency of each answer was tabulated. To assess the physician’s understanding of the treatment needs of patients and caregivers, patient–physician and caregiver–physician concordance rates for each answer regarding treatment needs were calculated according to symptom domains. Results In total, 263 pairs of patients–caregivers and 38 physicians were surveyed. The mean age of patients was 79.3 years, and their mean total score on the Mini-Mental State Examination was 20.9. Thirty-five and 38 symptoms were selected as symptoms causing patients and caregivers most distress, respectively. Memory impairment was most frequently selected for the treatment needs of patients, followed by constipation and bradykinesia. Memory impairment was also most frequently selected by caregivers, followed by visual hallucinations. For the symptom domain that causes patients or caregivers most distress, only about half of the patient–physician pairs (46.9%) and caregiver–physician pairs (50.8%) were matched. Logistic regression analysis identified that concordance rates for treatment needs between patient–physician and caregiver–physician were lower when autonomic dysfunction and sleep-related disorders were selected as the symptom domains that cause most distress. Conclusion There was considerable variability in the treatment needs of patients with DLB and their caregivers. Attending physicians had difficulty understanding the top treatment needs of their patients and caregivers, despite their expertise in DLB, because of various clinical manifestations. Attending physicians should pay more attention to autonomic dysfunction and sleep-related disorders in the treatment of DLB. Trial registration UMIN Clinical Trials Registry, UMIN000041844. Registered on 23 September 2020

Questionnaire survey of satisfaction with medication for five symptom domains of dementia with Lewy bodies among patients, their caregivers, and their attending physicians

“…This result was based on the evaluations by physicians who prescribed medication for autonomic dysfunction and focused on dysuria. This differs from the findings of the main study, 10 which analyzed all physicians enrolled in the study. Intervention of medications for dysuria may in themselves increase caregiver satisfaction, although their impact on the burden of caregiving was not evaluated in this study.…”

“…The main study was conducted from September 2020 to July 2021 and the details of the study design have been previously reported 10 . This study was conducted at 35 facilities in Japan including university hospitals, non‐university hospitals, and clinics.…”

“…Questionnaires were individually prepared for patients, caregivers, and physicians, the details of which have been reported 10 . In this study, 52 symptoms that are frequent and clinically important in DLB were pre‐selected and further classified into seven symptom domains 10 .…”

“…We previously conducted a multicentre, cross‐sectional, observational survey study of the treatment needs of DLB according to patients, their caregivers, and their attending physicians, and we identified the treatment needs of patients and caregivers and the perceptions of their physicians regarding these medical needs 10 . This subanalysis assessed the satisfaction of the study participants with medication for five symptom domains of DLB: cognitive impairment, parkinsonism, psychiatric symptoms, sleep‐related disorders, and autonomic dysfunction (orthostatic hypotension, constipation, and dysuria).…”

Correction: Treatment needs of dementia with Lewy bodies according to patients, caregivers, and physicians: a cross-sectional, observational, questionnaire-based study in Japan

“…Following publication of the original article [ 1 ], the authors corrected “the patient” to “the caregiver” in Table 4 header.…”