Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer.

Isabelle Colombet,Pascale Vinant,Laurent Rigal,Miren Urtizberea,Alexandra Rouquette

doi:10.1371/journal.pone.0227802

Abstract

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. The psychometric properties of the API translated into French were assessed among patients consecutively recruited from January to March 2017 in the waiting rooms of 19 general practitioners (N = 391) and in an oncology (N = 187) clinic in Paris. Relationships between the newly-developed items and the API subscale scores were studied. A three correlated factors confirmatory model (two factors related to decision-making and a factor related to information-seeking preferences) showed an acceptable fit on the whole sample and no measurement invariance issue was found across settings, age, sex and educational level. Internal consistency and test-retest reliability were acceptable for the information-seeking and decision-making subscales. One of the newly-developed items on patients' ability to anticipate a decision on the use of artificial respiration if a sudden deterioration of their illness occurred was not related to the API subscale scores. The French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.

Highlights

Shared decision-making is a process in which a choice is jointly made by a provider and a patient or a proxy decision-maker [1]
The additional vignette developed for use among patients with advanced cancer brought additional information on the patients’ preparedness to anticipate disease deterioration: while its first item and second item correlated with the DM and IS subscale scores in the Autonomy Preference Index (API), its third item did not correlate with any of the API subscales
Educational initiatives to improve communication and enhance implication in decision-making among seriously ill patients are needed and are currently being developed in protocols interestingly involving both healthcarers and patients/caregivers perspectives [50,51,52]. Since this module provides additional information on patient preferences for anticipation, a theme that is not addressed by the API, and since it is well accepted by patients, our clinical vignette can be used in conjunction

Summary

Introduction

Shared decision-making is a process in which a choice is jointly made by a provider and a patient or a proxy decision-maker [1]. Consideration of patient preferences as to their level of involvement in the decision-making process has become an ethical imperative, and has been integrated into healthcare programs and legal texts in many countries [3,4]. While patient participation in decision-making processes is essential in all medical contexts, it is complex in situations of incurable illness. 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. Anticipation of disease worsening remains difficult, especially when patient’s preferences towards prognosis medical information are unclear. 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 developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer

Objectives

Methods

Results

Discussion

Conclusion