| Literature DB >> 32292601 |
Ayse Kuspinar1, Kedar K V Mate2, Anne-Louise Lafontaine3,4, Nancy Mayo2,5.
Abstract
METHODS: Patients with PD completed the PGI and various standard patient-reported outcome (PRO) measures. The PGI and standard PRO measures were compared at the total score, domain, and item levels. Pearson's correlations and independent t-tests were used, as well as positive and negative predictive values.Entities:
Year: 2020 PMID: 32292601 PMCID: PMC7149443 DOI: 10.1155/2020/6916135
Source DB: PubMed Journal: Neurol Res Int ISSN: 2090-1860
Categorization of response options on standard PRO measures and PGI severity rating.
| Standard patient-reported outcome measures | Patient Generated Index |
|---|---|
| 3 categories | 0–3; 4–6; 7–10 |
| 4 categories | 0–3; 4–6; 7–8; 9–10 |
| 5 categories | 0–1; 2–3; 4–6; 7–8; 9–10 |
0 is the worst they can imagine and 10 exactly as they would like to be.
Demographic and clinical characteristics of the sample (n = 76).
| Characteristics | Mean (SD) or |
|---|---|
| Age (y) | 69.1 (9.5) |
| Women | 31 (41%) |
| Years since diagnosis | 6.0 (4.1) |
| Years since symptom onset | 8.2 (5.1) |
| Tremor dominant/akinetic rigid | 46 (71)/19 (29) |
| History of falls (none/rare/monthly) | 41 (63)/16 (25)/8 (12) |
| Levodopa equivalent dose (mg/day) | 770.4 (523.7) |
| Hoehn and Yahr stage (1–5) | 2.3 (0.9) |
| Patient Generated Index (10–0) | 4.2 (1.8) |
| Parkinson's Disease Questionnaire-8 (0–100) | 27 (14.2) |
| RAND-36 Physical Function Index (0–100) | 63.9 (27.7) |
| Geriatric Depression Scale (0–8) | 2.1 (2.4) |
| Perceived Deficits Questionnaire-20 (0–80) | 25.8 (11.9) |
| Apathy Scale (0–42) | 22.3 (3.9) |
SD, standard deviation; N, number. N = 64; N = 70; N = 67; N = 66. Patient Generated Index: 0 is the worst QOL, and 10 is perfect QOL. Hoehn and Yahr Stages: 1—minimal or no functional disability; 2—symptoms, no impairment of balance; 3—mild to moderate disability, still physically independent; 4—severe disability but still able to walk and stand unassisted; 5—confined to bed or wheelchair unless aided. Parkinson's Disease Questionnaire-8: lower is better; RAND-36 Physical Function Index: higher is better; Geriatric Depression Scale: higher is more depression; Perceived Deficits Questionnaire-20: higher is more deficits, ≥40 considered cognitively impaired; Apathy Scale: high is more apathy.
Figure 1Distribution of the severity scores on a scale from 0 (worst) to 10 (best) for walking, fatigue, depression, and memory/concentration among people who endorsed the area. 0 is the worst they can imagine and 10 exactly as they would like to be.
Comparison of the PGI against standard PRO measures at the domain level among people who endorsed the area.
| Identified as an area of concern on the PGI | Not identified as an area of concern on the PGI | Independent | |
|---|---|---|---|
| Walking (higher is better) | 45.0 (27.3) | 71.9 (24.0) | 0.0006 |
| RAND-36 physical function index | 40.0 (25.0–65.0) (19) | 80.0 (50.0–95.0) (46) | |
|
| |||
| Depression (higher is worse) | 4.5 (2.8) | 1.8 (2.2) | 0.009 |
| Geriatric depression scale | 4.5 (2.5–7.0) (8) | 1.0 (0.0–3.0) (62) | |
|
| |||
| Memory/concentration (higher is worse) | 34.6 (12.1) | 23.4 (10.6) | 0.0004 |
| Perceived Deficits Questionnaire-20 | 36.5 (25.0–44.0) (15) | 22.0 (17.0–30.0) (52) | |
SD, standard deviation; N, number; Q1, quartile 1; Q3, quartile 3.
Comparison of the PGI against standard PRO measures at the item level among people who endorsed the area.
| Items | Number of response options | Standard PRO measure | Agreement | PPV (%) | NPV (%) |
|---|---|---|---|---|---|
| Walking | |||||
| Walking several blocks | 3 | RAND-36 PFI | 20 (100) | 70 | 63 |
| Walking one block | 3 | RAND-36 PFI | 18 (90) | 55 | 80 |
| Walking more than a kilometer | 3 | RAND-36 PFI | 17 (85) | 80 | 59 |
|
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| Fatigue | |||||
| Energy for daily activities | 4 | AS | 16 (100) | 69 | 41 |
| Much fatigue to none | 10 | VAS | 11 (69) | 94 | 33 |
|
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| Depression | |||||
| Much depression to no depression | 10 | VAS | 6 (75) | 86 | 63 |
| Felt depressed | 5 | PDQ-8 | 3 (38) | 85 | 66 |
|
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| Memory/concentration | |||||
| Forget if you had already done something | 5 | PDQ-20 | 12 (80) | 80 | 75 |
| Forget what you came into the room for | 5 | PDQ-20 | 11 (73) | 67 | 46 |
| Trouble concentrating | 5 | PDQ-20 | 11 (73) | 53 | 70 |
| Forget what you did the night before | 5 | PDQ-20 | 11 (73) | 53 | 70 |
| Find your mind drifting | 5 | PDQ-20 | 11 (73) | 67 | 56 |
| Forget what you did last weekend | 5 | PDQ-20 | 11 (73) | 67 | 62 |
| Forget to take your medication | 5 | PDQ-20 | 11 (73) | 67 | 74 |
N, number; PPV, positive predictive value; NPV, negative predictive value; PFI, Physical Function Index; AS, Apathy Scale; VAS, visual analogue scale; PDQ-20, Perceived Deficits Questionnaire-20.