Figure 1
Adelphi ET Disease Specific Programme (DSP) analytic sample. Flow diagram for the ET DSP sample. Beginning with 1,003 ET patients on whom data was available, 960 ET patients had complete information on whether caregiving was needed, and 239 ET patients had a unique care partner available to answer care partner surveys at the study visit.
Table 1
Demographics and ET disease characteristics.
| OVERALL ET PATIENTS (n = 960) | PATIENT/CARE PARTNER COHORT (n = 239) | ||||
|---|---|---|---|---|---|
| Sex, % (n) | Female | 47% | (453) | 49% | (116) |
| Age (years), mean (sd) | Age | 64.9 | (13.3) | 67.9 | (11.6) |
| BMI, mean (sd) | BMI | 26.6 | (4.6) | 26.0 | (4.0) |
| Age category, % (n) | 18-64 | 43.1% | (414) | 35.6% | (85) |
| 64+ | 56.9% | (546) | 64.4% | (154) | |
| Race/Ethnicity, % (n) | White/Caucasian | 75.5% | (725) | 74.1% | (177) |
| Asian | 4.9% | (47) | 5.9% | (14) | |
| African American | 11.6% | (111) | 8.8% | (21) | |
| Hispanic | 3.6% | (35) | 4.6% | (11) | |
| Other | 4.4% | (42) | 6.7% | (16) | |
| Insurance coverage, % (n) | Medicare | 50.4% | (484) | 57.7% | (138) |
| Medicaid | 5.0% | (48) | 4.2% | (10) | |
| Commercial | 40.9% | (393) | 35.1% | (84) | |
| Other | 3.6% | (35) | 2.9% | (7) | |
| Employment status, % (n) | Full time | 31.9% | (306) | 23.8% | (57) |
| Part time | 9.4% | (90) | 8.8% | (21) | |
| Retired | 46.3% | (444) | 50.2% | (120) | |
| Unemployed | 11.8% | (113) | 17.2% | (41) | |
| Student | 0.7% | (7) | 0.0% | (0) | |
| Current home circumstances, % (n) | Residing at a nursing home | 1.5% | (14) | 1.7% | (4) |
| Residing with family | 82.9% | (796) | 89.1% | (213) | |
| Residing alone | 14.5% | (139) | 7.1% | (17) | |
| Other | 0.5% | (5) | 1.7% | (4) | |
| Unknown | 0.6% | (6) | 0.4% | (1) | |
| Has someone responsible for daily needs, % (n) | Yes | 25.0% | (240) | 65.7% | (157) |
| No | 75.0% | (720) | 30.5% | (73) | |
| Unknown | 0.0% | (0) | 3.8% | (9) | |
| TETRAS scores, mean (sd) | TETRAS activities of daily living (ADL) score | 16.2 | (9.4) | 18.8 | (9.8) |
| TETRAS Performance score | 21.4 | (11.7) | 24.3 | (12.1) | |
| TETRAS Performance Item 4 score | 9.4 | (4.7) | 10.6 | (4.8) | |
| TETRAS total score | 37.6 | (20.4) | 43.2 | (20.9) | |
| Onset of ET symptoms, % (n) | Childhood | 2.2% | (21) | 0.8% | (2) |
| 20–29 | 4.0% | (38) | 2.1% | (5) | |
| 30–39 | 5.4% | (52) | 2.1% | (5) | |
| 40–49 | 12.3% | (118) | 9.6% | (23) | |
| 50–59 | 24.4% | (234) | 28.0% | (67) | |
| 60–69 | 29.9% | (287) | 34.7% | (83) | |
| 70–79 | 11.6% | (111) | 13.8% | (3) | |
| 80–89 | 2.2% | (21) | 2.9% | (7) | |
| Unknown | 8.1% | (78) | 5.9% | (14) | |
| ET treatment status/history, % (n) | Currently prescribed a drug for treating ET | 83.9% | (805) | 90.0% | (215) |
| Previously prescribed a drug for treating ET | 7.3% | (70) | 3.3% | (8) | |
| Has never been prescribed ET treatment | 8.9% | (85) | 6.7% | (16) | |
| Currently-prescribed ET treatments, % (n) | Propranolol | 38.9% | (373) | 40.6% | (97) |
| Primidone | 31.4% | (301) | 39.3% | (94) | |
| Atenolol | 7.6% | (73) | 10.5% | (25) | |
| Sotalol | 0.2% | (2) | 0.8% | (2) | |
| Nadolol | 1.6% | (15) | 3.3% | (8) | |
| Alprazolam | 5.4% | (52) | 7.9% | (19) | |
| Clonazepam | 7.5% | (72) | 8.4% | (20) | |
| Lorazepam | 3.0% | (29) | 3.8% | (9) | |
| Diazepam | 2.4% | (23) | 4.6% | (11) | |
| Gabapentin | 5.8% | (56) | 6.7% | (16) | |
| Pregabalin | 2.5% | (24) | 3.8% | (9) | |
| Topiramate | 7.2% | (69) | 7.5% | (18) | |
| Zonisamide | 0.7% | (7) | 0.0% | (0) | |
| Clozapine | 0.2% | (2) | 0.0% | (0) | |
| Nimodipine | 0.0% | (0) | 0.0% | (0) | |
| Botulinum toxin | 2.7% | (26) | 3.3% | (8) | |
| Deep-brain stimulation (DBS) | 0.5% | (5) | 0.8% | (2) | |
| Cala Trio (wrist-worn device) | 2.4% | (23) | 3.8% | (9) | |
| Other | 2.0% | (19) | 1.3% | (3) | |
| Past ET-related procedures, % (n) | Deep-brain stimulation (DBS) | 5.8% | (56) | 7.1% | (17) |
| Thalamotomy | 3.3% | (32) | 2.5% | (6) | |
| Magnetic resonance-guided focused ultrasound (MRgFUS) | 4.4% | (42) | 3.8% | (9) | |
| Other | 2.6% | (25) | 2.5% | (6) | |
| None | 77.9% | (748) | 77.8% | (186) | |
| Unknown | 13.1% | (126) | 10.9% | (26) | |
[i] BMI, body mass index; TETRAS, The Essential Tremor Rating and Assessment Scale.
Figure 2
Relationships of care partners to individuals with ET. aProfessional = nursing home staff, nurse, home help, or professional care partner; bOther = voluntary care partner, friend/neighbor, other.
Figure 3
Association between proportion of individuals with ET with care needs and tremor severity. aPearson chi-square testing a global null hypothesis that distributions are equal across the 4 subcategories within a given TETRAS measure. The p-values < 0.05 indicate that the percentage of patients needing care is not equal across the subgroups.
Table 2
Association between tremor severity and need for care.
| MODEL STRUCTURE | TETRAS ADL SCORE | ||
|---|---|---|---|
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.0861*** | 1.0756*** | 1.0785*** |
| TETRAS PERFORMANCE SCORE | |||
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.0807*** | 1.0752*** | 1.0773*** |
| TETRAS PERFORMANCE ITEM 4 SCORE | |||
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.1899*** | 1.1760*** | 1.1801*** |
[i] ***p-value < 0.01; results presented in terms of odds ratios.
1Bivariate regression includes only TETRAS variable of interest with robust standard errors (Y = β0 + β1(TETRAS variable) + ɛ).
2Core model covariates also include age, sex, race, and CCI (Y = β0 + β1(TETRAS variable) + β2(AGE) + β3(SEX) + β4(RACE) + β5(CCI) + ɛ).
3Expanded model covariates also include core model covariates plus employment status (Y = β0 + β1(TETRAS variable) + β2(AGE) + β3(SEX) + β4(RACE) + β5(CCI) + β6(EMPLOYMENT_STATUS) + ɛ).
Figure 4
Association between caregiving time reported by care partners and tremor severity. aOne-way ANOVA testing a global null hypothesis that distributions are equal across the 4 subcategories within a given TETRAS measure. The p-values < 0.05 indicate that the mean hours per week is not equal across the subgroups.
Table 3
Association between tremor severity and need for high-intensity caregiving (defined as greater than 20 hours per week).
| MODEL STRUCTURE | TETRAS ADL SCORE | ||
|---|---|---|---|
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.0738*** | 1.0610*** | 1.0535*** |
| TETRAS PERFORMANCE SCORE | |||
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.0443*** | 1.0349** | 1.0255* |
| TETRAS PERFORMANCE ITEM 4 SCORE | |||
| BIVARIATE1 | CORE2 | EXPANDED MODEL3 | |
| Logit model | 1.0996*** | 1.0670** | 1.0471 |
[i] ***p-value < 0.01; ** p-value < 0.05; * p-value < 0.1; results presented in terms of odds ratios.
1Bivariate regression includes only TETRAS variable of interest with robust standard errors (Y = β0 + β1(TETRAS variable) + ɛ).
2Core model covariates also include age, sex, race, and CCI (Y = β0 + β1(TETRAS variable) + β2(AGE) + β3(SEX) + β4(RACE) + β5(CCI) + ɛ).
3Expanded model covariates also include core model covariates plus employment status (Y = β0 + β1(TETRAS variable) + β2(AGE) + β3(SEX) + β4(RACE) + β5(CCI) + β6(EMPLOYMENT_STATUS) + ɛ).