Patient-reported Needs, Non-motor Symptoms, and Quality of Life in Essential Tremor and Parkinson’s Disease

Sarah K. Lageman; Therese V. Cash; Melody N. Mickens

doi:10.5334/tohm.182

Figures & Tables

Table 1

Sample Characteristics

Sample Characteristic	PD (N = 77)	ET (N = 19)
Mean age (SD)	66.7 (9.0)	72.0 (13.4)
(Range)	(41–87)	(47–93)
Gender (%)
Male	54.5	36.8
Female	45.5	63.2
Race/ethnicity (%)
Caucasian	96.1	100.0
Native American	2.6	0.0
Hispanic/Latino	1.3	0.0
Pacific islander	0.0	5.3
Educational level (%)
GED	1.3	0.0
High school graduate	7.8	10.5
Vocational training or associate's degree	20.8	21.1
Bachelor's degree	36.4	47.4
Master's degree	22.1	15.8
Professional/doctoral degree	11.7	5.3
Employment status (%)
Retired	58.4	63.2
Full time	15.6	15.8
Part time	10.4	5.3
On disability	11.7	0.0
Unemployed, but not retired or on disability	3.9	5.3
Household income (%)
Less than $25,000	9.1	10.5
$25,000–45,000	20.8	15.8
$45,001–65,000	14.3	10.5
$65,001–85,000	10.4	21.1
$85,001–105,000	16.9	10.5
Greater than $105,001	13.0	10.5
Prefer not to answer	15.6	21.1
Insurance holder (%)
Self	72.7	63.2
Family member	18.2	31.6
Uninsured	3.9	5.3
Other	5.2	0.0
Type of medical insurance (%)
Medicare	61.0	52.6
Anthem Blue Cross Blue Shield	36.4	21.1
United Health Care	11.7	21.1
Tricare	5.2	0.0
Aetna	5.2	0.0
Other	27.3	31.6
Cognitive diagnoses¹ (%)
Cognitive impairment	0.0	0.0
Mild cognitive impairment	16.9	5.3
Dementia	1.3	0.0
Mean number of years since diagnosis¹	6.00	13.00
(N = 98) (SD)	(5.68)	(12.75)
(Range)	(0–28)	(0–38)
Stage of disorder¹ (%)
Stable	45.5	26.3
Progressive	42.9	57.9
Rapidly progressive	1.3	0.0
Other	2.6	0.0
Do not know	6.5	15.8

ET, Essential Tremor; GED, General Educational Development; PD, Parkinson's Disease; SD, Standard Deviation.

1 All responses were self-reported.

Table 2

Needs and Barriers to Care Assessment for Individuals with PD or ET

Patient Need	PD Patients (N = 77)	ET Patients (N = 19)
	Endorsed Need (%)	Endorsed Need (%)
Symptom management	67.5	52.6
Tremor/gait/balance problems	50.6	31.6
Speech/communication problems	40.3	5.3
Common medication side effects	28.6	21.1
Issues with swallowing	22.1	0
Incontinence	23.4	0
Sexual problems	15.6	0
Vision changes/issues	18.2	0
Communicating with treating doctors	13.0	10.5
Planning for the future	59.7	21.1
Long-term care planning	42.9	5.3
Financial concerns	36.4	5.3
Resource identification and accessing resources	27.3	15.8
Legal issues	18.2	0.0
Wellness strategies	54.5	26.3
Beginning an exercise regime or adapting one to fit personal needs	44.2	21.1
Nutritional changes and healthy eating strategies	36.4	15.8
Spirituality	13.0	15.8
Lifestyle changes	54.5	15.8
Driving	39.0	5.3
Vacationing and travel tips	35.1	10.5
Fall prevention	32.5	5.3
Safety in the home	31.2	5.3
Thinking changes	50.6	15.8
Expressing self	40.3	10.5
Memory	37.7	10.5
Attention	26.0	5.3
Problem solving	19.5	0.0
Stress management	31.2	36.8
Relationship changes	29.9	5.3
Maintaining a social life	22.1	5.3
Changes in personal relationships post diagnosis	11.7	0.0
Identifying emotional support systems	13.0	5.3
Role changes	6.5	0.0
Parenting-related issues	0.0	0.0
Emotional changes	29.9	10.5
Experiencing anxiety, depression and apathy	24.7	10.5
Work-related issues	23.4	21.1
Disclosing your diagnosis: how to and if you should	10.4	15.8
Balancing family, medical and health responsibilities with work duties	10.4	10.5
Transitioning from FT to PT work	7.8	0.0
Analyzing transferable skills and new/different job possibilities	3.9	5.3
Advocating for accommodations	3.9	0.0
Caregiver stress	26.0	5.3
Personality/behavioral changes	20.8	0.0
Visual hallucinations	7.8	0.0
Inappropriate behaviors	3.9	0.0
Aggression	2.6	0.0
Patient education about diagnosis	19.5	5.3
Adjustment to diagnosis	15.6	10.5
Early onset diagnosis	13.0	5.3
Other	2.6	0.0
Barriers to Care	PD Patients (N = 77)	ET Patients (N = 19)
	Endorsed Need (%)	Endorsed Need (%)
Cost of service	27.3	10.5
Insurance does not cover cost of service	18.2	15.8
Service/specialist not available in local area	14.3	5.3
Balancing family, work and medical issues	13.0	26.3
Stigma associated with having a movement disorder	7.8	31.6
Limited transportation	7.8	0.0
Lack of coordinated care	13.0	5.3
Limited support from family	7.8	5.3

[i] ET, Essential Tremor; FT, Full Time; PD, Parkinson's Disease; PT, Part Time.

Table 3

Patient-ranked Services of Greatest Need

Service	Individuals with PD	Individuals with ET
	Ranked Service as “Greatest” Need (%)	Ranked Service as “Greatest” Need (%)
Neurology	20.8	15.8
Exercise groups	18.2	5.3
Support group	10.4	31.6
Physical therapy	13.0	5.3
Speech/language therapy	9.1	0.0
Sleep specialist	2.6	0.0
Pharmacy	2.6	0.0
Clinical trials/research	1.3	5.3
Online/video support groups	1.3	5.3
Nutritionist	1.3	0.0
Service	Individuals with PD	Individuals with ET
	Currently Receiving Service (%)	Currently Receiving Service (%)
Neurology	72.7	31.6
Pharmacy	31.2	36.8
Physical therapy	29.9	5.3
Sleep specialist	10.4	0.0
Psychology	9.1	5.3
Speech/language therapy	6.5	0.0
Counseling	6.5	15.8
Nutrition	3.9	0.0
Neuropsychology	3.9	0.0
Occupational therapy	2.6	0.0
Genetic counseling	1.3	0.0
Social work	0.0	0.0

[i] ET, Essential Tremor; PD, Parkinson's Disease.

Table 4

Non-Motor Symptoms and Psychosocial Functioning

Domain of Functioning	Individuals with Parkinson's disease (N = 77)	Individuals with Essential Tremor (N = 19)
Domain of Functioning	Mean Score (SD)	Mean Score (SD)
(Range)	(Range)
Non-motor symptoms (PD-NMS)	10.4 (3.4)	6.1 (2.4)
Overall quality of life (LASA)	7.2 (1.8)	7.3 (2.2)
Spirituality	7.5 (1.9)	7.5 (2.3)
Emotional health	7.0 (2.2)	6.8 (2.2)
Intellectual functioning	6.8 (1.8)	7.8 (1.4)
Physical health	6.4 (2.0)	7.0 (2.7)
MD-related Quality of Life (PDQ-39)	22.5 (13.4)	22.0 (11.0)
(0–60.8)	(6.8–40.5)
Bodily discomfort	31.4 (22.9)	28.5 (20.1)
(0–83.3)	(0–66.7)
Mobility	27.5 (23.2)	20.7 (21.0)
(0–97.5)	(0–77.5)
Communication	24.9 (18.6)	13.6 (19.9)
(0–75.0)	(0–75.0)
Activities of daily living	23.5 (17.7)	28.3 (21.0)
(0–83.3)	(4.2–62.5)
Cognitive impairment	23.5 (15.0)	19.1 (13.6)
(0–62.5)	(0–56.3)
Emotional well-being	22.8 (17.7)	28.5 (15.5)
(0–79.2)	(4.2–50.0)
Stigma	16.1 (17.5)	30.3 (30.2)
(0–87.5)	(0–81.3)
Social support	10.4 (17.2)	7.2 (11.9)
(0–75.0)	(0–41.7)
Work Productivity and Activity Impairment (WPAI-General Health)
Are you currently employed (working for pay)?	27.3%	21.1%
During the past 7 days, how many hours did you miss from work because of your health problems? (N = 20)	1.2 (2.1)	2.0 (3.5)
During the past 7 days, how many hours did you miss from work because of any other reason, such as vacation, holidays, time off to participate in this study? (N = 22)	0 (.0)	2.2 (3.8)
During the past 7 days, how many hours did you actually work? (N = 23)	25.3 (16.6) (0–60)	38.7 (12.1) (26.0–50.0)
During the past 7 days, how much did your health problems affect your productivity while you were working? (N = 26)	3.6 (2.1)	3.5 (2.9)
During the past 7 days, how much did your health problems affect your ability to do your regular daily activities, other than work at a job? (N = 99)	3.8 (2.5)	2.4 (2.4)

[i] LASA, Linear Analog Scale Assessment; MD, Movement Disorders; PDQ-39, Parkinson's Disease-39; PD-NMS, Parkinson's Disease Non-Motor Symptom Questionnaire; SD, Standard Deviation.