Introduction
Methods
Cross-cultural validation
Subscales | Care aspects |
---|---|
Information 12 items | Patient organizations (Q1), adaptive equipment, home care and facilities (Q2), reliable information (Q3), peer support (Q4), medication use and side effects (Q5), reimbursement of treatment costs (Q6), contact after medication regimen changes (Q7), alternative health therapies (Q8), advanced treatment options (Q9), ability to drive a car (Q10), find health professionals specialized in PD (Q11), and treatment options allied health professionals (Q12) |
Collaboration 11 items | Leading physician (Q13), care coordinator (Q14), awareness of professionals of each other’s involvement (Q15), mutual agreements (Q16), conflicting information (Q17), informed about what professionals discussed regarding your treatment (Q18), cooperation second opinion (Q19), timely referrals (20), collaboration PD nurse specialist and neurologist (Q21), collaboration between physicians (Q22), and fixed contact for questions or complaints (Q25) |
Accessibility 4 items | Waiting period before visiting a neurologist (Q23), waiting period in waiting room (Q24), email access (Q26), and telephone access (Q27) |
Empathy 5 items | Questions answered in a timely manner (Q28), listen carefully (Q29), take enough time (Q30), explain things clearly (Q31), and professional competence (Q32) |
Patient involvement 6 items | Access to medical record (Q33), authorize who has access to your medical record (Q34), opportunity to choose your health professional (Q35), opportunity to schedule appointments (Q36), adapt treatment to personal preferences (Q37), and participation in treatment decisions (Q38) |
Emotional support 6 items | Attention paid to the caregiver (Q39), active involvement of the caregiver (Q40), support after the diagnosis was first communicated (Q41), support coping with the disease (Q42), support relationship changes (Q43), and support related to employment (Q44) |
Multicenter study
Data collection
Sample size calculation
Data processing
Data analysis
Discriminative power
Feedback reports
Results
Respondents
Net response |
N
| 955 |
Respondents per center | Median (range) | 50 (37–58) |
Age (years) | Median (range) | 69.0 (32–93) |
Gender |
n (%) women | 377 (38.8) |
Level of education |
n (%) college or university degree | 501 (52.5) |
n (%) technical or community college | 75 (7.9) | |
n (%) college no degree | 157 (16.5) | |
n (%) high school | 170 (17.8) | |
n (%) less than high school | 51 (5.3) | |
Diagnosis | Parkinson’s disease | 928 (97.2) |
Parkinsonism (MSA and PSP) | 27 (2.8) | |
Disease duration (years) | Median (range) | 7.0 (1–40) |
Self-reported Hoehn and Yahr disease stage |
n (%) HY1 | 306 (32.5) |
n (%) HY2 | 190 (20.2) | |
n (%) HY3 | 374 (39.7) | |
n (%) HY4 | 49 (5.2) | |
n (%) HY5 | 22 (2.3) | |
Self-reported physical health status |
n (%) excellent | 70 (7.4) |
n (%) very good | 301 (31.6) | |
n (%) good | 387 (40.7) | |
n (%) fair | 165 (17.3) | |
n (%) poor | 29 (3.0) | |
Self-reported mental health status |
n (%) excellent | 155 (16.3) |
n (%) very good | 363 (38.1) | |
n (%) good | 298 (31.3) | |
n (%) fair | 116 (12.2) | |
n (%) poor | 20 (2.1) | |
Race |
n (%) Caucasian | 671 (93.6) |
n (%) African American | 17 (2.4) | |
n (%) Asian | 14 (2.0) | |
n (%) American Indian or Alaska native | 2 (0.3) | |
n (%) other | 13 (1.8) | |
Overall quality of care |
n (%) excellent | 603 (62.6) |
n (%) very good | 265 (27.5) | |
n (%) good | 77 (8.0) | |
n (%) fair | 15 (1.6) | |
n (%) poor | 3 (0.3) |
Overall patient centeredness and subscale scores
Quality Improvement Scores(QIS)
Item | Subscale | %NE | IES (0–3) | IPS (0–3) | QIS (0–3) | |
---|---|---|---|---|---|---|
Q18 | Informed about what professionals discussed with each other regarding your treatment | Collaboration | 80.3 | 0.80 | 2.19 | 4.80 |
Q8 | Informed about alternative health therapies | Information | 71.0 | 1.03 | 2.07 | 4.08 |
Q7 | Being contacted after a new medication regimen | Information | 61.1 | 1.22 | 2.21 | 3.94 |
Q9 | Informed about advanced treatment options | Information | 62.6 | 1.33 | 2.24 | 3.73 |
Q16 | Mutual agreements about your treatment | Collaboration | 60.9 | 1.30 | 2.16 | 3.68 |
Q2 | Informed about adaptive equipment, home care and facilities | Information | 73.5 | 1.03 | 1.72 | 3.39 |
Q1 | Informed about Parkinson’s disease patient organizations | Information | 75.3 | 0.95 | 1.55 | 3.17 |
Q22 | Collaboration between physicians | Collaboration | 46.7 | 1.73 | 2.39 | 3.05 |
Q10 | Informed about ability to drive a car | Information | 50.1 | 1.61 | 2.10 | 2.93 |
Q12 | Informed about treatment options allied health professionals | Information | 41.8 | 1.80 | 2.44 | 2.92 |
Evaluation of the feedback reports
Discriminative power of the PCQ-PD
Intercept mean (95 % CI) | Sex (two levels) | Education (five levels) | Physical health (five levels) | Mental health (five levels) | Disease stage (five levels) | |
---|---|---|---|---|---|---|
Overall patient centeredness | ||||||
0-Model | 2.15 (2.02–2.28) | |||||
Final model | 1.82 (1.58–2.05) | 0.05 (0.03–0.07) | 0.04 (0.01–0.08) | 0.04 (0.00–0.07) | ||
Information subscale | ||||||
0-Model | 1.83 (1.66–2.01) | |||||
Final model | 1.13 (0.81–1.45) | 0.11 (0.08–0.14) | 0.07 (0.01–0.12) | 0.05 (0.01 to 0.09) | ||
Collaboration subscale | ||||||
0-Model | 1.94 (1.77–2.11) | |||||
Final model | 1.84 (1.52–2.16) | |||||
Accessibility subscale | ||||||
0-Model | 2.59 (2.43–2.75) | |||||
Final model | 2.53 (2.25–2.82) | −0.08 (−0.15 to −0.01) | 0.05 (0.01–0.10) | −0.05 (−0.09 to −0.02) | ||
Patient involvement subscale | ||||||
0-Model | 2.46 (2.28–2.65) | |||||
Final model | 2.30 (1.96–2.63) | 0.03 (0.00–0.07) | 0.07 (0.01–0.12) | |||
Empathy subscale | ||||||
0-Model | 2.64 (2.48–2.80) | |||||
Final model | 2.24 (1.96–2.52) | 0.03 (0.00–0.06) | 0.07 (0.02–0.11) | 0.07 (0.03–0.11) | ||
Emotional support subscale | ||||||
0-Model | 2.22 (1.91–2.52) | |||||
Final model | 2.26 (1.68–2.84) |
Language (four levels) | Race (four levels) | Var patienta
| Var centerb
| PCVc
| ICCd
| |
---|---|---|---|---|---|---|
Overall patient centeredness | ||||||
0-Model | 0.191 | 0.005* | Reference | 0.025 | ||
Final model | 0.175 | 0.004* | 8.8 % | 0.023 | ||
Information subscale | ||||||
0-Model | 0.367 | 0.012* | Reference | 0.031 | ||
Final model | −0.06 (−0.12 to 0.00) | 0.329 | 0.006* | 11.6 % | 0.017 | |
Collaboration subscale | ||||||
0-Model | 0.318 | 0.012* | Reference | 0.037 | ||
Final model | 0.295 | 0.011* | 7.3 % | 0.038 | ||
Accessibility subscale | ||||||
0-Model | 0.281 | 0.017* | Reference | 0.058 | ||
Final model | −0.08 (−0.13 to −0.02) | 0.263 | 0.016* | 7.0 % | 0.058 | |
Patient involvement subscale | ||||||
0-Model | 0.380 | 0.020* | Reference | 0.051 | ||
Final model | −0.07 (−0.13 to −0.01) | 0.349 | 0.019* | 8.0 % | 0.052 | |
Empathy subscale | ||||||
0-Model | 0.272 | 0.002 | Reference | 0.007 | ||
Final model | 0.248 | 0.003* | 8.5 % | 0.011 | ||
Emotional support subscale | ||||||
0-Model | 0.628 | 0.007 | Reference | 0.011 | ||
Final model | 0.627 | 0.004 | 0.7 % | 0.006 |