Introduction
Material and methods
Study design and inclusion criteria
Assessment with several patient-reported outcome measures
Facial grading
Statistics
Results
Investigation of a selection bias: comparison of study participants with the patients not responding to the survey
Baseline characteristics, socioeconomic data, motor and non-motor deficits, and interest in further therapy types of the study participants
Parameter | Absolute | % |
---|---|---|
Gender | ||
Female | 50 | 72.5 |
Male | 19 | 27.5 |
Permanent relationship | ||
No | 14 | 20.3 |
Yes | 55 | 79.7 |
Profession | ||
Employed | 41 | 59.4 |
Retired | 19 | 27.5 |
Unemployed | 7 | 10.1 |
In apprentice/studying | 2 | 2.9 |
Highest education | ||
Secondary school | 26 | 37.7 |
High school | 12 | 17.4 |
University | 29 | 42.0 |
Other | 2 | 2.9 |
Previous therapy in chronic phase of the disease | ||
Home mirror training | 65 | 94.2 |
Supportive eye protection* | 59 | 85.5 |
Facial training with therapist | 57 | 82.6 |
Acupuncture | 34 | 49.3 |
Electrostimulation | 32 | 46.2 |
Biofeedback training | 31 | 44.0 |
Light/heat/cold therapy | 28 | 40.6 |
Facial training with computer | 20 | 29.0 |
Eye lid surgery | 14 | 20.3 |
Botulinum toxin | 18 | 26.1 |
Angle of mouth surgery | 2 | 2.9 |
Still most disturbing symptoms | ||
Impaired/uncontrolled eye closure | 46 | 66.7 |
Asymmetric face | 44 | 63.8 |
Impaired smiling | 36 | 52.2 |
Decreased tearing | 17 | 24.6 |
Increased tearing | 8 | 11.6 |
Mean ± SD | Median, range | |
Age, years | 50.4 ± 14.2 | 54, 20–76 |
Interval onset to survey, months | 5.9 ± 9.1 | 2.6, 0.5–60.6 |
Stennert index, at rest | 1.1 ± 1.3 | 1, 0–4 |
Stennert index, in motion | 3.3 ± 1.6 | 3, 1–6 |
Stennert index, total | 4.4 ± 2.8 | 4, 1–10 |
Sunnybrook, composite | 44.8 ± 20.5 | 41, 4–97 |
Mean ± SD | Median, range | ||
---|---|---|---|
Facial Clinimetric Evaluation Scale (FaCE) | |||
FaCE Facial movement | 38.1 ± 21.6 | 33.3, 0–91.7 | |
FaCE Facial comfort | 50.5 ± 26.3 | 50.0,0–100 | |
FaCE Oral function | 76.1 ± 25.3 | 87.5, 0–100 | |
FaCE Eye comfort | 57.7 ± 31.9 | 62.5, 0–100 | |
FaCE Lacrimal control | 68.8 ± 29.5 | 75.0, 0–100 | |
FaCE Social function | 64.7 ± 27.5 | 68.6, 0–100 | |
FaCE Total score | 57.1 ± 16.5 | 60.0, 13.3–92.9 | |
36-Item Short Form Survey (SF-36) | |||
SF-36 Physical functioning | 83.4 ± 22.8 | 90.0, 5–100 | |
SF-36 Role physical | 64.7 ± 39.4 | 75.0, 0–100 | |
SF-36 Bodily pain | 70.5 ± 27.1 | 74.0, 0–100 | |
SF-36 General health | 58.0 ± 23.9 | 57.0, 10–100 | |
SF-36 Vitality | 54.1 ± 20.3 | 55.0, 10–100 | |
SF-36 Social role functioning | 69.9 ± 26.6 | 75.0, 0–100 | |
SF-36 Emotional role functioning | 66.5 ± 42.7 | 100.0, 0–100 | |
SF-36 Mental health | 66.8 ± 19.5 | 68.0, 16–96 | |
SF-36 Physical health sum score | 47.4 ± 9.6 | 48.9, 23.3–58.7 | |
SF-36 Mental health sum score | 44.6 ± 12.6 | 46.9, 18.7–66.8 | |
Liebowitz Social Anxiety Scale (LSAS) | |||
LSAS Anxiety | 43.4 ± 15.8 | 40.8, 24–96 | |
LSAS Avoidance | 44.7 ± 14.9 | 41.7, 24–96 | |
LSAS Total | 87.8 ± 30.1 | 82.0, 48–192 | |
Patient Health Questionnaire (PHQ)-9 | 5.8 ± 4.9 | 4, 0–20 | |
Technical commitment | |||
Technology acceptance | 2.9 ± 0.5 | 2.8, 1.8–4.0 | |
Technology competence | 3.0 ± 0.6 | 3.0, 1.3–4.0 | |
Technology control beliefs | 2.8 ± 0.7 | 2.8, 1.0–4.8 | |
Technology willingness | 2.9 ± 0.5 | 3.0, 1.4–3.7 | |
Technology affinity to electronic devices | |||
Enthusiasm | 3.0 ± 0.9 | 3.0, 1.0–5.0 | |
Subjective competency | 3.4 ± 0.8 | 3.3, 1.0–5.0 | |
Negative impacts | 2.6 ± 0.5 | 2.6, 1.6–3.8 | |
Positive impacts | 3.1 ± 0.6 | 3.1, 2.0–4.5 | |
PAREMO-20 | |||
Psychological burden | 6.1 ± 2.6 | 5, 3–12 | |
Physical burden | 9.6 ± 3.9 | 10, 4–16 | |
Social support | 8.6 ± 3.5 | 8, 4–16 | |
Readiness to change | 5.8 ± 2.7 | 6, 3–12 | |
Knowledge | 9.0 ± 2.7 | 9, 3–12 | |
Skepticism | 7.1 ± 2.5 | 7.5, 3–12 |
Rehabilitation motivation domains and influencing factors
Measure | Beta | 95% CI lower | 95% CI upper | Stand.* beta | p** |
---|---|---|---|---|---|
PAREMO-20 Psychological burden | |||||
PROMs; R2 = 0.850; p < 0.0001 | |||||
FaCE Facial comfort | − 0.007 | − 0.023 | 0.009 | − 0.068 | 0.410 |
FaCE Eye comfort | − 0.014 | − 0.028 | − 0.001 | − 0.177 | 0.042 |
FaCE Social function | − 0.013 | − 0.037 | 0.011 | − 0.135 | 0.294 |
SF-36 Role physical | 0.015 | 0.001 | 0.029 | 0.229 | 0.041 |
SF-36 Bodily pain | − 2E-05 | − 0.021 | 0.021 | 0.000 | 0.998 |
SF-36 General health | − 0.018 | − 0.039 | 0.002 | − 0.170 | 0.080 |
SF-36 Vitality | 0.043 | 0.004 | 0.082 | 0.343 | 0.032 |
SF-36 Social role functioning | − 0.011 | − 0.041 | 0.019 | − 0.116 | 0.461 |
SF-36 Emotional role functioning | − 0.026 | − 0.040 | − 0.012 | − 0.438 | < 0.0001 |
SF-36 Mental health | − 0.041 | − 0.092 | 0.009 | − 0.313 | 0.108 |
LSAS Anxiety | 0.017 | − 0.048 | 0.083 | 0.105 | 0.602 |
LSAS Avoidance | − 0.029 | − 0.102 | 0.045 | − 0.166 | 0.435 |
PHQ-9 | 0.133 | − 0.026 | 0.293 | 0.250 | 0.100 |
PAREMO-20 Physical burden | |||||
Socioeconomic aspects; R2 = 0.326; p = 0.025 | |||||
Age, years | 0.062 | − 0.003 | 0.126 | 0.227 | 0.062 |
Relationship (0 = no; 1 = yes) | 1.770 | − 0.503 | 4.043 | 0.186 | 0.125 |
PROMs; R2 = 0.768; p < 0.0001 | |||||
FaCE Facial comfort | − 0.030 | − 0.063 | 0.003 | − 0.204 | 0.073 |
FaCE Oral function | 0.022 | − 0.066 | 0.110 | 0.144 | 0.616 |
FaCE Eye comfort | − 0.029 | − 0.055 | − 0.003 | − 0.246 | 0.027 |
FaCE Lacrimal control | − 0.017 | − 0.094 | 0.061 | − 0.118 | 0.669 |
FaCE Social function | − 0.024 | − 0.078 | 0.029 | − 0.175 | 0.365 |
SF-36 Physical functioning | − 0.013 | − 0.063 | 0.036 | − 0.079 | 0.594 |
SF-36 Role physical | 0.009 | − 0.022 | 0.039 | 0.087 | 0.577 |
SF-36 Bodily pain | 0.004 | − 0.037 | 0.046 | 0.029 | 0.842 |
SF-36 General health | − 0.048 | − 0.088 | − 0.009 | − 0.300 | 0.018 |
SF-36 Vitality | − 0.003 | − 0.078 | 0.072 | − 0.015 | 0.940 |
SF-36 Social role functioning | − 0.045 | − 0.111 | 0.020 | − 0.314 | 0.173 |
SF-36 Emotional role functioning | 0.000 | − 0.028 | 0.027 | − 0.002 | 0.990 |
SF-36 Mental health | 0.010 | − 0.086 | 0.105 | 0.049 | 0.840 |
LSAS Anxiety | − 0.039 | − 0.164 | 0.086 | − 0.160 | 0.534 |
LSAS Avoidance | 0.028 | − 0.112 | 0.168 | 0.110 | 0.686 |
PHQ-9 | 0.020 | − 0.283 | 0.323 | 0.025 | 0.896 |
PAREMO-20 Social support | |||||
Socioeconomic aspects; R2 = 0.438; p = 0.003 | |||||
Gender (0 = male; 1 = female) | − 1.724 | − 3.468 | 0.020 | − 0.220 | 0.053 |
Relationship (0 = no; 1 = yes) | 2.149 | 0.184 | 4.114 | 0.247 | 0.033 |
Working (0 = no; 1 = yes) | − 1.823 | − 3.453 | − 0.192 | − 0.252 | 0.029 |
PROMs; R2 = 0.569; p = 0.028 | |||||
FaCE Eye comfort | − 0.008 | − 0.037 | 0.021 | − 0.073 | 0.578 |
FaCE Social function | − 0.017 | − 0.070 | 0.036 | − 0.128 | 0.531 |
SF-36 Physical functioning | − 0.038 | − 0.090 | 0.014 | − 0.243 | 0.147 |
SF-36 Role physical | − 0.007 | − 0.041 | 0.028 | − 0.073 | 0.703 |
SF-36 Bodily pain | − 0.009 | − 0.054 | 0.035 | − 0.072 | 0.669 |
SF-36 General health | − 0.042 | − 0.086 | 0.003 | − 0.277 | 0.065 |
SF-36 Vitality | − 0.012 | − 0.097 | 0.073 | − 0.069 | 0.779 |
SF-36 Social role functioning | 0.016 | − 0.053 | 0.085 | 0.120 | 0.646 |
SF-36 Mental health | 0.056 | − 0.047 | 0.159 | 0.306 | 0.281 |
LSAS Anxiety | − 0.004 | − 0.144 | 0.136 | − 0.017 | 0.957 |
LSAS Avoidance | 0.048 | − 0.110 | 0.206 | 0.198 | 0.548 |
PHQ-9 | 0.058 | − 0.282 | 0.398 | 0.079 | 0.733 |
Facial grading | |||||
Stennert index, at rest, initial | − 0.455 | − 2.438 | 1.529 | − 0.178 | 0.648 |
Stennert index, in motion, initial | 1.071 | − 0.476 | 2.617 | 0.523 | 0.171 |
Stennert index, at rest | 1.102 | − 0.797 | 3.002 | 0.406 | 0.250 |
Stennert index, in motion | − 0.751 | − 2.258 | 0.755 | − 0.336 | 0.322 |
Sunnybrook, composite | − 0.001 | − 0.076 | 0.075 | − 0.004 | 0.986 |
PAREMO-20 Readiness to change | |||||
PROMs; R2 = 0.699; p < 0.0001 | |||||
FaCE Social function | 0.002 | − 0.032 | 0.036 | 0.022 | 0.900 |
SF-36 Physical functioning | − 0.009 | − 0.044 | 0.026 | − 0.079 | 0.598 |
SF-36 Role physical | − 0.002 | − 0.024 | 0.020 | − 0.035 | 0.833 |
SF-36 Bodily pain | 0.002 | − 0.027 | 0.030 | 0.017 | 0.909 |
SF-36 General health | − 0.027 | − 0.055 | 0.002 | − 0.239 | 0.067 |
SF-36 Vitality | 0.010 | − 0.045 | 0.065 | 0.074 | 0.727 |
SF-36 Social role functioning | − 0.006 | − 0.052 | 0.040 | − 0.060 | 0.794 |
SF-36 Emotional role functioning | − 0.017 | − 0.038 | 0.003 | − 0.279 | 0.093 |
SF-36 Mental health | − 0.038 | − 0.108 | 0.031 | − 0.281 | 0.276 |
LSAS Anxiety | − 0.027 | − 0.118 | 0.064 | − 0.160 | 0.556 |
LSAS Avoidance | 0.025 | − 0.076 | 0.127 | 0.142 | 0.618 |
PHQ-9 | − 0.004 | − 0.223 | 0.216 | − 0.007 | 0.972 |
Technology affinity; R2 = 0.199; p = 0.267 | |||||
TA Subjective competency | − 0.708 | − 1.584 | 0.167 | − 0.209 | 0.111 |
TA Positive impacts | 0.168 | − 1.016 | 1.353 | 0.037 | 0.777 |
PAREMO-20 Knowledge | |||||
Socioeconomic aspects; R2 = 0.406; p = 0.003 | |||||
Age, years | − 0.070 | − 0.125 | − 0.015 | − 0.363 | 0.013 |
Working (0 = no; 1 = yes) | 0.360 | − 1.235 | 1.956 | 0.064 | 0.653 |
Prior therapy chronic phase; R2 = 0.460; p = 0.002 | |||||
Facial training therapist | 2.441 | 0.683 | 4.200 | 0.328 | 0.007 |
Biofeedback training | 1.343 | − 0.219 | 2.904 | 0.241 | 0.091 |
Facial training computer | 0.036 | − 1.384 | 1.456 | 0.007 | 0.960 |
PROMs; R2 = 0.356; p = 0.012 | |||||
FaCE Oral function | − 0.033 | − 0.097 | 0.031 | − 0.301 | 0.313 |
FaCE Lacrimal control | 0.057 | 0.002 | 0.112 | 0.614 | 0.042 |
Technology affinity; R2 = 0.407; p = 0.009 | |||||
TA Subjective competency | 0.499 | − 0.387 | 1.386 | 0.139 | 0.265 |
TA Negative impacts | 0.697 | − 0.483 | 1.876 | 0.144 | 0.242 |
TA Positive impacts | − 1.700 | − 3.082 | − 0.317 | − 0.288 | 0.017 |
Therapy interests; R2 = 0.512; p = 0.002 | |||||
Facial training with therapist | 0.845 | − 0.752 | 2.441 | 0.133 | 0.294 |
Facial training with computer | 1.743 | − 0.131 | 3.616 | 0.332 | 0.068 |
Biofeedback training | 0.605 | − 1.329 | 2.539 | 0.115 | 0.533 |
Botulinum toxin | 0.356 | − 1.291 | 2.004 | 0.056 | 0.666 |
PAREMO-20 Skepticism | |||||
PROMs; R2 = 0.613; p = 0.006 | |||||
FaCE Facial movement | − 0.018 | − 0.045 | 0.009 | − 0.155 | 0.192 |
FaCE Facial comfort | − 0.021 | − 0.044 | 0.001 | − 0.226 | 0.057 |
FaCE Social function | − 0.007 | − 0.043 | 0.029 | − 0.074 | 0.711 |
SF-36 Physical functioning | − 0.003 | − 0.037 | 0.030 | − 0.029 | 0.849 |
SF-36 Role physical | − 0.023 | − 0.046 | − 0.001 | − 0.364 | 0.045 |
SF-36 General health | − 0.038 | − 0.067 | − 0.008 | − 0.359 | 0.013 |
SF-36 Vitality | 0.003 | − 0.053 | 0.060 | 0.027 | 0.907 |
SF-36 Social role functioning | 0.033 | − 0.014 | 0.081 | 0.357 | 0.165 |
SF-36 Mental health | 0.035 | − 0.033 | 0.103 | 0.265 | 0.311 |
LSAS Anxiety | 0.056 | − 0.039 | 0.150 | 0.353 | 0.243 |
LSAS Avoidance | − 0.062 | − 0.169 | 0.045 | − 0.372 | 0.249 |
PHQ-9 | 0.181 | − 0.053 | 0.414 | 0.339 | 0.127 |