patient generated index
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Author(s):  
Maryann Roebuck ◽  
Tim Aubry ◽  
Valerie Leclerc ◽  
Christiane Bergeron-Leclerc ◽  
Catherine Briand ◽  
...  

2020 ◽  
Vol 8 (6) ◽  
pp. 1231-1238 ◽  
Author(s):  
Baron Lonner ◽  
Andrea Castillo ◽  
Amit Jain ◽  
Paul Sponseller ◽  
Amer Samdani ◽  
...  

2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Ayse Kuspinar ◽  
Kedar K. V. Mate ◽  
Anne-Louise Lafontaine ◽  
Nancy Mayo

Introduction. Parkinson’s disease (PD) affects all aspects of an individual’s life and is heterogeneous across people and time. The Patient Generated Index (PGI) is an individualized measure of quality of life (QOL) that allows patients to identify the areas of life that are important to them. Although the PGI has immense potential for use in clinical and research settings, its validity has not been assessed in PD. The purpose of this study is to estimate how well areas of QOL that patients with PD nominate on the PGI agree with ratings obtained from standard outcome measures. 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. Results. The sample (n = 76) had a mean age of 69 (standard deviation 9) and were predominantly men (59%). The PGI was moderately correlated (r = −0.35) with the standardized disease-specific QOL measure Parkinson’s Disease Questionnaire (PDQ-8). Within one severity rating, agreement between the PGI and different standard outcome measures ranged from 85 to 100% for walking, 69 to 100% for fatigue, 38 to 75% for depression, and 20 to 80% for memory/concentration. Conclusion. This study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD.


Author(s):  
Usama Fawzy Kamel ◽  
Ushan Andrady

HIV is a chronic manageable disease. The disease and/or antiretroviral therapy treatment may lead to patient complaints regarding their hearing and chemosensory perception. Patient Generated Index (PGI) has been a validated patient generated questionnaire, which is flexible to capture areas relevant to patients [i] . It has not been used before to assess the chemosensory (smell and taste) and auditory concerns of HIV positive patients. Methods: PGI questionnaire was distributed to nineteen HIV patients attending the research clinic. Patients had five areas to record their perception in relation to senses (smell, taste and hearing). They then score how do they feel about this particular area, then they spend points to improve the area when needed. Patients were recruited from a HIV clinic after giving their informed consent matching inclusion/exclusion criteria. The questionnaire had five sections where patients identify problems matter to them in relation to smell, taste and hearing. The sixth question is generated by the patient in relation to other health areas of concern to the individual. Results: PGI scores (n=19) mean was 5.39 (range 1.08 8, SD 1.93). Smell mean scores 1.1, taste was 1 and hearing was 0.97 Smell was 20.4% of the total PGI score; taste was 18.6% and hearing 18% of the PGI score. Patients scored 2.32 (43% of the total PGI score) in other areas (back pain, arthritis, stomach pains, ) Conclusions: This is an observational cohort study to document the PGI results in relation to auditory and chemosensory perception in HIV positive patients. Although auditory and chemosensory problems in five areas scores altogether 57% of the PGI score, others (one area question), patients scored 43% of the total PGI score. Other complaints preoccupied patients and were relatively more cumbersome than the three senses. [i] Ruta D, Garratt A, Leng M, Russell I, MacDonald L. A New Approach to the Measurement of Quality of Life: The Patient-Generated Index. Medical Care. 1994 Nov;32(11):1109-1126


2020 ◽  
Vol 69 (3) ◽  
pp. 227-232
Author(s):  
Susan S. Tavernier ◽  
Susan L. Beck

2019 ◽  
Vol 19 (9) ◽  
pp. S118
Author(s):  
Nicholas Stekas ◽  
Themistocles S. Protopsaltis ◽  
Ethan W. Ayres ◽  
Gregory M. Mundis ◽  
Justin S. Smith ◽  
...  

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