Background
Methods
Study design and participants
Symptoms and symptom domains of DLB
Symptom domain | Number of symptoms | Symptoms |
---|---|---|
Cognitive impairment | 7 | Memory impairment, disorientation, executive dysfunction, attention dysfunction, fluctuating cognition, visuospatial dysfunction, other cognitive impairments |
Parkinsonism | 11 | Bradykinesia/akinesia, rigidity, action tremor, rest tremor, postural instability, gait disturbance (short-stepped gait), freezing of gait, abnormal posture, salivation, fall, dysphagia |
Psychiatric symptoms except for sleep disturbance and abnormal eating behavior | 12 | Delusions, visual hallucinations, hallucinations other than visual hallucinations, agitation/aggression, depression, anxiety, apathy, disinhibition, aberrant motor behavior, negativism, delirium, other psychiatric symptoms |
Eating behavior-related problems | 7 | Loss of appetite, increase in appetite, weight loss, weight gain, food refusal, eating non-edible things, unbalanced diet |
Sleep-related disorders | 7 | Rapid eye movement sleep behavior disorder, daytime somnolence, day–night reversal, nighttime sleep disorder, sudden sleep, restless legs syndrome, periodic limb movement disorder |
Autonomic dysfunction | 7 | Orthostatic hypotension, disturbance of sweating, constipation, nighttime dysuria, daytime dysuria, syncope, dizziness |
Sensory disorders | 1 | Dysosmia |
Contents of the questionnaires
Assessments
Outcomes
Statistical analysis
Results
Participants’ characteristics
Patients (N = 263) | Caregivers (N = 263) | Physicians (N = 38) | |||
---|---|---|---|---|---|
Age (y) | 79.3 ± 6.7 | Age (y) | 64.8 ± 12.8 | Age (y) | 51.1 ± 7.8 |
Sex (M/F) | 128/135 | Sex (M/F) | 72/191 | Sex (M/F) | 32/6 |
DLB duration (m) | 30.4 ± 29.7 (n = 260) | Relationship with patient | Affiliated clinical department | ||
Psychiatry | 26 (69.4) | ||||
Education history (y) | 11.8 ± 2.8 (n = 242) | Spouse | 139 (52.9) | Neurology | 6 (15.8) |
Institute | Father or mother | 0 (0.0) | Geriatric medicine | 4 (10.5) | |
University hospital | 123 (46.8) | Sibling | 4 (1.5) | Neurosurgery | 1 (2.6) |
Non-university hospital | 51 (19.4) | Son or daughter | 104 (39.5) | Others | 1 (2.6) |
Clinic | 89 (33.8) | Son- or daughter-in-law | 12 (4.6) | Number of patients with DLB treated by the physician | |
Clinical department | Grandchild | 2 (0.8) | Less than 10 | 0 (0.0) | |
Psychiatry | 134 (51.0) | Care provider | 2 (0.8) | Between 10 and 30 | 5 (13.2) |
Neurology | 49 (18.6) | Living with the patient, yes | 211 (80.2) | Between 30 and 100 | 12 (31.6) |
Geriatric medicine | 65 (24.7) | Time spent with the patient (h/d) | 14.5 ± 8.9 (n = 258) | More than 100 | 21 (55.3) |
Neurosurgery | 1 (0.4) | Presence of assistant caregiver, yes | 91 (34.6) | Inclusion criteria | |
Others | 14 (5.3) | Working, yes | 111 (42.2) | 1) A representative organizer or an organizer of Dementia with Lewy Bodies Society Japan | 8 (15.8) |
Living alone, yes | 25 (10.2) (n = 245) | J-ZBI_8 total score | 8.3 ± 6.3 | ||
MMSE-J score | 20.9 ± 5.9 | J-ZBI_8 personal strain | 6.0 ± 4.5 | 2) An advisor or cooperating physician in the DLB Support Network in Japan | 12 (31.6) |
≤19 (moderate cognitive impairment) | 95 (36.1) | ||||
≥20 (mild cognitive impairment) | 168 (63.9) | ||||
NPI-12 total score | 16.0 ± 16.6 (n = 261) | J-ZBI_8 role strain | 2.3 ± 2.7 | 3) An author or co-author of a review article or research paper on DLB | 30 (78.9) |
MDS-UPDRS Part III total score | 23.8 ± 20.6 (n = 261) | SF-8 PCS | 48.7 ± 7.3 (n = 254) | 4) Any physician affiliated with the same department at the facility where the physician mentioned in (1), (2), or (3) works | 0 (0.0) |
MDS-UPDRS Part II total score | 11.3 ± 10.8 (n = 262) | SF-8 MCS | 47.9 ± 6.8 (n = 254) | ||
CFI | 2.3 ± 3.0 | ||||
SF-8 PCS | 45.4 ± 8.2 (n = 257) | ||||
SF-8 MCS | 48.7 ± 7.0 (n = 257) |
Symptoms that cause the patient most distress and symptoms that the patient would most likely prioritize for receiving treatment
Symptoms that cause the patient most distress (N = 263) | Symptoms that the patient would most likely prioritize for receiving treatment (N = 263) | ||
---|---|---|---|
Symptom domain | n (%) | Symptom domain | n (%) |
Parkinsonism | 46 (17.5) | Parkinsonism | 49 (18.6) |
Cognitive impairment | 40 (15.2) | Cognitive impairment | 47 (17.9) |
Autonomic dysfunction | 35 (13.3) | Autonomic dysfunction | 21 (8.0) |
Psychiatric symptoms | 19 (7.2) | Sleep-related disorders | 15 (5.7) |
Sleep-related disorders | 15 (5.7) | Psychiatric symptoms | 12 (4.6) |
Eating behavior-related problems | 5 (1.9) | Eating behavior-related problems | 4 (1.5) |
Sensory disorders | 0 (0.0) | Sensory disorders | 0 (0.0) |
Symptom | n (%) | Symptom | n (%) |
Memory impairment | 23 (8.7) | Memory impairment | 30 (11.4) |
Constipation | 20 (7.6) | Bradykinesia/akinesia | 20 (7.6) |
Bradykinesia/akinesia | 17 (6.5) | Abnormal posture | 8 (3.0) |
Visual hallucinations | 8 (3.0) | Constipation | 7 (2.7) |
Nighttime sleep disorder | 7 (2.7) | Nighttime dysuria | 7 (2.7) |
Abnormal posture | 6 (2.3) | Nighttime sleep disorder | 7 (2.7) |
Gait disturbance | 6 (2.3) | Visual hallucinations | 7 (2.7) |
Nighttime dysuria | 6 (2.3) | Attention dysfunction | 6 (2.3) |
Rapid eye movement sleep behavior disorder | 6 (2.3) | Gait disturbance | 6 (2.3) |
Daytime dysuria | 5 (1.9) | Rapid eye movement sleep behavior disorder | 6 (2.3) |
Anxiety | 4 (1.5) | Action tremor | 5 (1.9) |
Attention dysfunction | 4 (1.5) | Disorientation | 4 (1.5) |
Other cognitive impairment | 4 (1.5) | Fall | 3 (1.1) |
Postural instability | 4 (1.5) | Other cognitive impairment | 3 (1.1) |
Action tremor | 3 (1.1) | Daytime dysuria | 2 (0.8) |
Disorientation | 3 (1.1) | Daytime somnolence | 2 (0.8) |
Disturbance of sweating | 3 (1.1) | Disturbance of sweating | 2 (0.8) |
Executive dysfunction | 3 (1.1) | Fluctuating cognition | 2 (0.8) |
Freezing of gait | 3 (1.1) | Freezing of gait | 2 (0.8) |
Hallucinations other than visual hallucinations | 3 (1.1) | Hallucinations other than visual hallucinations | 2 (0.8) |
Salivation | 3 (1.1) | Orthostatic hypotension | 2 (0.8) |
Depression | 2 (0.8) | Postural instability | 2 (0.8) |
Fall | 2 (0.8) | Weight loss | 2 (0.8) |
Fluctuating cognition | 2 (0.8) | Agitation/aggression | 1 (0.4) |
Weight gain | 2 (0.8) | Anxiety | 1 (0.4) |
Weight loss | 2 (0.8) | Delusions | 1 (0.4) |
Day–night reversal | 1 (0.4) | Dizziness | 1 (0.4) |
Daytime somnolence | 1 (0.4) | Dysphagia | 1 (0.4) |
Delusions | 1 (0.4) | Executive dysfunction | 1 (0.4) |
Loss of appetite | 1 (0.4) | Loss of appetite | 1 (0.4) |
Orthostatic hypotension | 1 (0.4) | Rigidity | 1 (0.4) |
Other psychiatric symptoms | 1 (0.4) | Salivation | 1 (0.4) |
Rest tremor | 1 (0.4) | Visuospatial dysfunction | 1 (0.4) |
Rigidity | 1 (0.4) | Weight gain | 1 (0.4) |
Visuospatial dysfunction | 1 (0.4) | Aberrant motor behavior | 0 (0.0) |
Aberrant motor behavior | 0 (0.0) | Apathy | 0 (0.0) |
Agitation/aggression | 0 (0.0) | Day–night reversal | 0 (0.0) |
Apathy | 0 (0.0) | Delirium | 0 (0.0) |
Delirium | 0 (0.0) | Depression | 0 (0.0) |
Disinhibition | 0 (0.0) | Disinhibition | 0 (0.0) |
Dizziness | 0 (0.0) | Dysosmia | 0 (0.0) |
Dysosmia | 0 (0.0) | Eating non-edible things | 0 (0.0) |
Dysphagia | 0 (0.0) | Food refusal | 0 (0.0) |
Eating non-edible things | 0 (0.0) | Increase in appetite | 0 (0.0) |
Food refusal | 0 (0.0) | Negativism | 0 (0.0) |
Increase in appetite | 0 (0.0) | Other psychiatric symptoms | 0 (0.0) |
Negativism | 0 (0.0) | Periodic limb movement disorder | 0 (0.0) |
Periodic limb movement disorder | 0 (0.0) | Rest tremor | 0 (0.0) |
Restless legs syndrome | 0 (0.0) | Restless legs syndrome | 0 (0.0) |
Sudden sleep | 0 (0.0) | Sudden sleep | 0 (0.0) |
Syncope | 0 (0.0) | Syncope | 0 (0.0) |
Unbalanced diet | 0 (0.0) | Unbalanced diet | 0 (0.0) |
Invalid answer | 103 (39.2) | Invalid answer | 115 (43.7) |
Multiple answers | 60 (22.8) | Multiple answers | 59 (22.4) |
Do not know | 31 (11.8) | Do not know | 41 (15.6) |
Unanswered | 12 (4.6) | Unanswered | 15 (5.7) |
Symptoms that cause the caregiver most distress and symptoms that the caregiver would most likely prioritize for receiving treatment
Symptoms that cause the caregiver most distress (N = 263) | Symptoms that the caregiver would most likely prioritize for receiving treatment (N = 263) | ||
---|---|---|---|
Symptom domain | n (%) | Symptom domain | n (%) |
Psychiatric symptoms | 57 (21.7) | Psychiatric symptoms | 54 (20.5) |
Cognitive impairment | 55 (20.9) | Parkinsonism | 46 (17.5) |
Parkinsonism | 34 (12.9) | Cognitive impairment | 42 (16.0) |
Autonomic dysfunction | 18 (6.8) | Autonomic dysfunction | 17 (6.5) |
Sleep-related disorders | 14 (5.3) | Sleep-related disorders | 14 (5.3) |
Eating behavior-related problems | 5 (1.9) | Eating behavior-related problems | 3 (1.1) |
Sensory disorders | 0 (0.0) | Sensory disorders | 1 (0.4) |
Symptom | n (%) | Symptom | n (%) |
Memory impairment | 25 (9.5) | Memory impairment | 24 (9.1) |
Visual hallucinations | 20 (7.6) | Visual hallucinations | 16 (6.1) |
Agitation/aggression | 14 (5.3) | Bradykinesia/akinesia | 15 (5.7) |
Bradykinesia/akinesia | 11 (4.2) | Agitation/aggression | 11 (4.2) |
Executive dysfunction | 11 (4.2) | Delusions | 11 (4.2) |
Delusions | 10 (3.8) | Constipation | 10 (3.8) |
Constipation | 8 (3.0) | Postural instability | 7 (2.7) |
Fluctuating cognition | 7 (2.7) | Rapid eye movement sleep behavior disorder | 7 (2.7) |
Nighttime dysuria | 7 (2.7) | Executive dysfunction | 6 (2.3) |
Other cognitive impairment | 6 (2.3) | Gait disturbance | 6 (2.3) |
Postural instability | 6 (2.3) | Other cognitive impairment | 5 (1.9) |
Rapid eye movement sleep behavior disorder | 6 (2.3) | Aberrant motor behavior | 4 (1.5) |
Gait disturbance | 4 (1.5) | Abnormal posture | 4 (1.5) |
Hallucinations other than visual hallucinations | 4 (1.5) | Action tremor | 4 (1.5) |
Aberrant motor behavior | 3 (1.1) | Depression | 4 (1.5) |
Attention dysfunction | 3 (1.1) | Fall | 4 (1.5) |
Nighttime sleep disorder | 3 (1.1) | Rigidity | 4 (1.5) |
Other psychiatric symptoms | 3 (1.1) | Daytime somnolence | 3 (1.1) |
Rigidity | 3 (1.1) | Fluctuating cognition | 3 (1.1) |
Abnormal posture | 2 (0.8) | Hallucinations other than visual hallucinations | 3 (1.1) |
Action tremor | 2 (0.8) | Nighttime dysuria | 3 (1.1) |
Daytime somnolence | 2 (0.8) | Attention dysfunction | 2 (0.8) |
Depression | 2 (0.8) | Nighttime sleep disorder | 2 (0.8) |
Fall | 2 (0.8) | Other psychiatric symptoms | 2 (0.8) |
Loss of appetite | 2 (0.8) | Orthostatic hypotension | 2 (0.8) |
Restless legs syndrome | 2 (0.8) | Restless legs syndrome | 2 (0.8) |
Salivation | 2 (0.8) | Anxiety | 1 (0.4) |
Visuospatial dysfunction | 2 (0.8) | Apathy | 1 (0.4) |
Weight gain | 2 (0.8) | Daytime dysuria | 1 (0.4) |
Anxiety | 1 (0.4) | Delirium | 1 (0.4) |
Disorientation | 1 (0.4) | Disorientation | 1 (0.4) |
Dizziness | 1 (0.4) | Dysosmia | 1 (0.4) |
Freezing of gait | 1 (0.4) | Food refusal | 1 (0.4) |
Increase in appetite | 1 (0.4) | Freezing of gait | 1 (0.4) |
Orthostatic hypotension | 1 (0.4) | Increase in appetite | 1 (0.4) |
Rest tremor | 1 (0.4) | Rest tremor | 1 (0.4) |
Sudden sleep | 1 (0.4) | Syncope | 1 (0.4) |
Syncope | 1 (0.4) | Visuospatial dysfunction | 1 (0.4) |
Apathy | 0 (0.0) | Weight gain | 1 (0.4) |
Day–night reversal | 0 (0.0) | Day–night reversal | 0 (0.0) |
Daytime dysuria | 0 (0.0) | Disinhibition | 0 (0.0) |
Delirium | 0 (0.0) | Disturbance of sweating | 0 (0.0) |
Disinhibition | 0 (0.0) | Dizziness | 0 (0.0) |
Disturbance of sweating | 0 (0.0) | Dysphagia | 0 (0.0) |
Dysosmia | 0 (0.0) | Eating non-edible things | 0 (0.0) |
Dysphagia | 0 (0.0) | Loss of appetite | 0 (0.0) |
Eating non-edible things | 0 (0.0) | Negativism | 0 (0.0) |
Food refusal | 0 (0.0) | Periodic limb movement disorder | 0 (0.0) |
Negativism | 0 (0.0) | Salivation | 0 (0.0) |
Periodic limb movement disorder | 0 (0.0) | Sudden sleep | 0 (0.0) |
Unbalanced diet | 0 (0.0) | Unbalanced diet | 0 (0.0) |
Weight loss | 0 (0.0) | Weight loss | 0 (0.0) |
Invalid answer | 80 (30.4) | Invalid answer | 86 (32.7) |
Multiple answers | 65 (24.7) | Multiple answers | 81 (30.8) |
Do not know | 10 (3.8) | Do not know | 4 (1.5) |
Unanswered | 5 (1.9) | Unanswered | 1 (0.4) |
Attending physicians’ understanding of the symptom domain that causes patients and caregivers most distress
Assessment of difference in whether patients answered themselves or with assistance by their caregiver
Comparison of concordance rates by symptom domain
Search for factors using the stepwise method
Between patient and physician | Symptom domain that causes the patient most distress | Univariate LR analysis | Multivariate LR: input significant variables with variable increasing method (likelihood ratio) | |||||
---|---|---|---|---|---|---|---|---|
Concordance (n = 75) | Discordance (n = 85) | OR | 95% CI | p value | OR | 95% CI | p value | |
Patient-side factors | ||||||||
Patient’s age (y) | n.e. | |||||||
<80.0 | 43 (57.3) | 35 (41.2) | 1.000 | ref | ||||
≥80.0 | 32 (42.7) | 50 (58.8) | 1.920 | 1.023–3.602 | 0.042 | |||
Number of persons living with the patient | ||||||||
Alone | 4 (5.3) | 14 (16.5) | 1.000 | ref | n.e. | |||
Two | 35 (46.7) | 36 (42.4) | 0.294 | 0.088–0.980 | 0.046 | |||
Three or more | 36 (48.0) | 35 (41.2) | 0.278 | 0.083–0.927 | 0.037 | |||
Patient’s initial symptom domain | n.e. | |||||||
Cognitive impairment | 19 (25.7) | 35 (41.2) | 5.066 | 1.895–13.541 | 0.001 | |||
Parkinsonism | 22 (29.7) | 8 (9.4) | 1.000 | ref | ||||
Psychiatric symptoms | 15 (20.3) | 24 (28.2) | 4.400 | 1.563–12.385 | 0.005 | |||
Eating behavior-related problems | 0 (0.0) | 1 (1.2) | n.c. | |||||
Sleep-related disorders | 16 (21.6) | 10 (11.8) | 1.719 | 0.555–5.326 | 0.348 | |||
Autonomic dysfunctions | 2 (2.7) | 3 (3.5) | 4.125 | 0.579–29.392 | 0.157 | |||
Sensory disorders | 0 (0.0) | 4 (4.7) | n.c. | |||||
MDS-UPDRS Part III total score | n.e. | |||||||
<18.0 | 27 (36.0) | 46 (54.8) | 1.000 | ref | ||||
≥18.0 | 48 (64.0) | 38 (45.2) | 0.465 | 0.246–0.879 | 0.019 | |||
MDS-UPDRS Part II total score | n.e. | |||||||
<9.0 | 30 (40.0) | 48 (57.1) | 1.000 | ref | ||||
≥9.0 | 45 (60.0) | 36 (42.9) | 0.500 | 0.266–0.941 | 0.032 | |||
Pharmacotherapy for cognitive impairment | n.e. | |||||||
None | 23 (30.7) | 13 (15.3) | 1.000 | ref | ||||
Yes | 52 (69.3) | 72 (84.7) | 2.450 | 1.137–5.280 | 0.022 | |||
Pharmacotherapy for parkinsonism | n.e. | |||||||
None | 35 (46.7) | 55 (64.7) | 1.000 | ref | ||||
Yes | 40 (53.3) | 30 (35.3) | 0.477 | 0.253–0.901 | 0.023 | |||
Most inconvenient domain that patients selected | ||||||||
Cognitive impairment | 22 (29.3) | 18 (21.2) | 2.318 | 0.937–5.737 | 0.069 | 3.720 | 1.256–11.019 | 0.018 |
Parkinsonism | 34 (45.3) | 12 (14.1) | 1.000 | ref | 1.000 | ref | ||
Psychiatric symptoms | 9 (12.0) | 10 (11.8) | 3.148 | 1.032–9.604 | 0.044 | 5.101 | 1.328–19.601 | 0.018 |
Eating behavior-related problems | 0 (0.0) | 5 (5.9) | n.c. | n.c. | ||||
Sleep-related disorders | 5 (6.7) | 10 (11.8) | 5.667 | 1.609–19.961 | 0.007 | 10.884 | 2.286–51.814 | 0.003 |
Autonomic dysfunction | 5 (6.7) | 30 (35.3) | 17.000 | 5.367–53.851 | <0.001 | 28.533 | 6.419–126.830 | <0.001 |
Sensory disorders | 0 (0.0) | 0 (0.0) | - | - | ||||
Whether the patient told their caregiver or family members about patient’s most inconvenient symptom | n.e. | |||||||
Yes | 63 (91.3) | 64 (78.0) | 1.000 | ref | ||||
No | 4 (5.8) | 16 (19.5) | 3.937 | 1.247–12.430 | 0.019 | |||
Unknown | 2 (2.9) | 2 (2.4) | 0.984 | 0.984–0.134 | 0.988 | |||
Caregiver-side factors | ||||||||
Relationship with the patient from patient’s perspective | n.e. | |||||||
Spouse | 43 (57.3) | 33 (38.8) | 1.000 | ref | ||||
Non-spouse | 32 (42.7) | 52 (61.2) | 2.117 | 1.125–3.984 | 0.020 | |||
Time spent with the patient (h/day) | ||||||||
<16.0 | 27 (36.5) | 49 (59.0) | 2.509 | 1.317–4.779 | 0.005 | 3.679 | 1.538–8.799 | 0.003 |
≥16.0 | 47 (63.5) | 34 (41.0) | 1.000 | ref | 1.000 | ref | ||
Patient’s most inconvenient symptom domain that the caregiver selected | n.e. | |||||||
Cognitive impairment | 19 (31.1) | 18 (24.7) | 1.759 | 0.704–4.394 | 0.226 | |||
Parkinsonism | 26 (42.6) | 14 (19.2) | 1.000 | ref | ||||
Psychiatric symptoms | 8 (13.1) | 11 (15.1) | 2.554 | 0.834–7.816 | 0.100 | |||
Eating behavior-related problems | 0 (0.0) | 3 (4.1) | n.c. | |||||
Sleep-related disorders | 1 (1.6) | 9 (12.3) | 16.714 | 1.917–145.766 | 0.011 | |||
Autonomic dysfunctions | 7 (11.5) | 18 24.7() | 4.776 | 1.608–14.179 | 0.005 | |||
Sensory disorders | 0 (0.0) | 0 (0.0) | - |
Between caregiver and physician | Symptom domain that causes the caregiver most distress | Univariate LR analysis | Multivariate LR: input significant variables with variable increasing method (likelihood ratio) | |||||
---|---|---|---|---|---|---|---|---|
Concordance (n = 93) | Discordance (n = 90) | OR | 95% CI | p value | OR | 95% CI | p value | |
Patient-side factor | ||||||||
Autonomic dysfunction | n.e. | |||||||
None | 63 (67.7) | 45 (50.0) | 1.000 | ref | ||||
Yes | 30 (32.3) | 45 (50.0) | 2.100 | 1.153–3.826 | 0.015 | |||
Caregiver-side factors | ||||||||
Patient’s most inconvenient symptom domain that the caregiver selected | ||||||||
Cognitive impairment | 29 (31.2) | 26 (28.9) | 2.152 | 0.868–5.335 | 0.098 | 2.152 | 0.868–5.335 | 0.098 |
Parkinsonism | 24 (25.8) | 10 (11.1) | 1.000 | ref | 1.000 | ref | ||
Psychiatric symptoms | 37 (39.8) | 20 (22.2) | 1.297 | 0.519–3.244 | 0.578 | 1.297 | 0.519–3.244 | 0.578 |
Eating behavior-related problems | 0 (0.0) | 5 (5.6) | n.c. | n.c. | ||||
Sleep-related disorders | 1 (1.1) | 13 (14.4) | 31.200 | 3.585–271.515 | 0.002 | 31.200 | 3.585–271.515 | 0.002 |
Autonomic dysfunction | 2 (2.2) | 16 (17.8) | 19.200 | 3.707–99.445 | <0.001 | 19.200 | 3.707–99.445 | <0.001 |
Sensory disorders | 0 (0.0) | 0 (0.0) | — | |||||
Physician-side factors | ||||||||
Institute | n.e. | |||||||
University hospital | 48 (51.6) | 32 (35.6) | 1.000 | ref | ||||
Non-university hospital | 14 (15.1) | 21 (23.3) | 2.250 | 1.000–5.062 | 0.050 | |||
Clinic | 31 (33.3) | 37 (41.1) | 1.790 | 0.931–3.443 | 0.081 |