| Literature DB >> 31935263 |
Isabelle Colombet1,2, Laurent Rigal3,4, Miren Urtizberea1, Pascale Vinant2, Alexandra Rouquette3,5.
Abstract
BACKGROUND: While patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient's preferences towards prognosis medical information are unclear. Valid tools to explore patients' preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer.Entities:
Year: 2020 PMID: 31935263 PMCID: PMC6959662 DOI: 10.1371/journal.pone.0227802
Source DB: PubMed Journal: PLoS One ISSN: 1932-6203 Impact factor: 3.240
Frequencies (%) of the answers to the items of the additional clinical vignette “preparedness to anticipate disease worsening” in the ONCO group.
| · I would prefer to be left to make my own decision | 5 (3) |
| · I would rather the decision be left to me, after having taken my doctor's advice into consideration | 24 (13) |
| · I would rather decide together with my doctor | 71 (38) |
| · I would prefer to let my doctor decide, once my opinion has been taken into consideration | 56 (30) |
| · I would prefer to let my doctor decide alone | 30 (16) |
| · Missing | 1 (0) |
| · Yes, absolutely | 136 (73) |
| · Mostly yes | 41 (22) |
| · Neutral | 3 (2) |
| · Mostly no | 5 (3) |
| · No, not at all | 1 (1) |
| · Missing | 1 (0) |
| · Yes, absolutely | 63 (34) |
| · Mostly yes | 67 (36) |
| · Neutral | 23 (12) |
| · Mostly no | 22 (12) |
| · No, not at all | 8 (4) |
| · Missing | 4 (2) |
Characteristics and scores of the samples.
| GP | ONCO sample | |
|---|---|---|
| Characteristics—N (%) | N = 391 | N = 187 |
| Age | ||
| · 40 years or younger | 142 (36) | 5 (3) |
| · 41 to 55 years | 113 (29) | 33 (18) |
| · 56 to 70 years | 93 (24) | 89 (47) |
| · Older than 70 years | 43 (11) | 60 (32) |
| Sex (Male) | 132 (34) | 86 (46) |
| Living as a couple | 259 (66) | 130 (71) |
| Social benefits | 52 (13) | 19 (12) |
| Education | ||
| ·Middle school or none | 78 (20) | 28 (15) |
| · High school | 136 (35) | 44 (24) |
| · Higher education | 176 (45) | 109 (61) |
| Profession | ||
| · Shopkeepers and tradesmen | 14 (4) | 14 (8) |
| · Professionals and managers | 102 (27) | 75 (43) |
| · Office, sales, and service employees | 111 (29) | 44 (24) |
| · Skilled or unskilled manual workers | 106 (27) | 32 (18) |
| · White-collar workers | 33 (9) | 9 (5) |
| · Never worked ? | 21 (5) | 6 (3) |
| · Information-seeking score | 86.8 (10.3) | 85.3 (13.3) |
| · Decision-making score | 47.6 (16.0) | 45.6 (17.5) |
| · Clinical vignette URI | 4.6 (1.8) | 4.2 (1.7) |
| · Clinical vignette HBP | 3.1 (1.7) | 2.5 (1.8) |
| · Clinical vignette MI | 3.5 (1.7) | 3.2 (1.8) |
| · I would prefer to be informed about everything | 232 (59) | 138 (76) |
| · I would prefer to be informed if I ask for i | 75 (19) | 29 (16) |
| · I would prefer to let my doctor decide what I need to be informed abou | 83 (21 | 13 (7 |
| · I would prefer not to be informed | 1 (0) | 2 (1) |
| · I would prefer to be left to make my own decisions | 4 (1) | 6 (3) |
| · I would prefer to be left to decide after taking my doctor's advice into consideration | 60 (15) | 20 (11) |
| · I would prefer to make a decision together with my doctor | 201 (51) | 112 (62) |
| · I would prefer to let my doctor decide after having taken my opinion into consideration | 84 (22) | 36 (20) |
| · I would rather let my doctor decide alone | 42 (11) | 7 (4) |
GP: general practice, ONCO: oncologic service, URI: Upper respiratory tract illness, HBP: High blood pressure, MI: Myocardial infarction.
Fig 1Path diagrams (with standardized coefficients) for the three factor model with fit indices using a confirmatory factor analysis (robust weighted least squares [WLSMV] estimator).
Ellipses represent unobserved latent factors, rectangles represent observed variables, single-headed arrows represent the effect of one variable on another (factor loading) and double-headed arrows represent covariance between pairs of variables. Coefficients are all statistically significant with a p-value<0.001, except *p-value = 0.039 and coefficient in grey which is not statistically significant. ε: measurement error df: degree of freedom. CFI: Comparative Fit Index. TLI: Tucker Lewis Index. RMSEA: Root Mean Square Error Approximation.
Convergent validity and hypothesis testing: mean (SD) scores to the API subscales according to patients’ global judgement and characteristics (N = 578).
| Scores to the API subscales | ||||||
|---|---|---|---|---|---|---|
| N (%) | DM | URI | HBP | MI | IS | |
| · … to be left to make my own decisions /… to decide after taking my doctor's advice into consideration. | 90 (16) | 58.8 | 5.3 | 3.9 | 4.1 | |
| · … my doctor and I decide together | 313 (55) | 48.0 | 4.6 | 3.0 | 3.5 | |
| · … to let my doctor decide after taking my opinion into consideration / … to let my doctor decide alone | 169 (30) | 38.4 | 4.0 | 2.2 | 2.9 | |
| p-value | <0.001 | <0.001 | <0.001 | <0.001 | ||
| · … to be informed about everything | 370 | 89.2 (9.3) | ||||
| · … to be informed if I ask for it | 104 | 82.4 (11.6) | ||||
| · … to let my doctor decide what I need to be informed about / … not to be informed about | 99 | 80.1 | ||||
| p-value | <0.001 | |||||
| · Male | 218 | 43.7 | 4.4 | 2.6 | 3.3 | 85.3 |
| · Female | 360 | 49.0 | 4.6 | 3.1 | 3.5 | 87.0 |
| p-value | <0.001 | 0.310 | 0.002 | 0.201 | 0.081 | |
| · 40 years or younger | 147 | 50.4 (16.2) | 4.5 | 3.2 | 3.4 | 88.1 |
| · 41 to 55 years | 146 | 48.0 | 4.5 | 3.0 | 3.4 | 86.9 |
| · 56 to 70 years | 182 | 46.4 | 4.5 | 2.8 | 3.3 | 84.8 |
| · Older than 70 years | 103 (18) | 41.4 | 4.3 | 2.5 | 3.5 | 85.7 |
| p-value | <0.001 | 0.655 | 0.039 | 0.884 | 0.066 | |
| · No | 186 | 47.8 (16.3) | 4.8 | 3.2 | 3.5 | 85.2 |
| · Yes | 389 | 46.5 | 4.3 | 2.8 | 3.3 | 86.9 |
| p-value | 0.379 | 0.001 | 0.004 | 0.176 | 0.095 | |
| · Middle school or none | 106 (19) | 40.8 | 4.5 | 2.5 | 3.7 | 83.9 |
| · High school | 180 | 44.3 | 4.5 | 2.9 | 3.4 | 86.5 |
| · Higher education | 285 | 50.9 | 4.5 | 3.1 | 3.3 | 87.0 |
| p-value | <0.001 | 0.999 | 0.023 | 0.101 | 0.055 | |
*One-way analysis of variance
**Student t-test.
DM: Decision-making preference subscale, URI: Upper respiratory tract illness clinical vignette, HBP: High blood pressure clinical vignette, MI: Myocardial infarction clinical vignette, IS: Information-seeking subscale
Associations between answers to the items of the additional vignette on preparedness to anticipate disease worsening and Autonomy Preference Index (API) subscale scores presented as median (quartile 1 –quartile 3).
| Items from the additional clinical vignette | N (%) | API subscale scores | ||||
|---|---|---|---|---|---|---|
| DM | URI | HBP | MI | IS | ||
| · … my own decision / … after taking into consideration the doctor's advice | 29 | 50 | 5 | 3 | 4 | 81 |
| · … my doctor and I decide together | 71 | 50 | 5 | 3 | 3 | 91 |
| · … after taking my opinion into consideration / … my doctor decide alone | 86 | 38 | 3 | 2 | 3 | 88 |
| p-value | <0.001 | 0.003 | <0.001 | <0.001 | 0.223 | |
| · Yes, absolutely / Mostly yes | 177 | 46 | 4 | 2 | 3 | 87 |
| · Neutral / Mostly no / No, not at all | 9 | 46 | 5 | 2 | 3 | 66 |
| p-value | 0.707 | 0.390 | 0.780 | 0.463 | 0.010 | |
| · Yes, absolutely / Mostly yes | 130 | 46 | 4 | 2 | 3 | 91 |
| · Neutral / Mostly no / No, not at all | 53 | 42 | 4 | 2 | 3 | 84 |
| p-value | 0.079 | 0.282 | 0.121 | 0.845 | 0.250 | |
* Kruskall-Wallis test
** Mann-Whitney’s test.
DM: Decision Making, URI: Upper respiratory tract illness, HBP: High blood pressure, MI: Myocardial infarction, IS: Information Seeking.