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A better understanding of Continuous Positive Airway Pressure (CPAP) adherence is a priority in improving patient care. To Identify adherence typology with a longitudinal approach, and explore the early determinants of lower adherence to CPAP. Obstructive sleep apnea patients ( N = 204). Prospective and longitudinal study.A classification into four profiles was observed: “ Regular Adherents,” “ Non-Regular Adherents,” “ Persistent Non-Adherents,” and “ Non-Persistent Non-Adherents.” Specific biopsychosocial factors make it possible to evaluate the risk of belonging to a lower adherence profile. We propose a novel approach of CPAP treatment adherence. Several pre-determinants have been identified.

Resume Introduction Afin de favoriser l’adaptation au traitement par pression positive continue, un document d’information, destine aux personnes debutant leur prise en charge, a ete elabore. Methodes La methode du focus group , en suscitant une dynamique de groupe favorisant l’expression des sept participants, a permis d’identifier non seulement les informations utiles, mais aussi la maniere de les transmettre. Resultats Le focus group a permis de pointer des objectifs precis associes a la dimension emotionnelle la plus adaptee : (1) entrainer une prise de conscience, par des formulations suscitant la peur quant aux mecanismes physiologiques et aux consequences induites par le syndrome d’apnees obstructives du sommeil, (2) permettre la reconnaissance de la symptomatologie, des facteurs de risque et de la chronicite de ce syndrome, (3) rassurer et motiver le patient au sujet du traitement par pression positive continue. Conclusions Dans le but de favoriser l’adaptation au traitement par pression positive continue en debut de la prise en charge, l’association de differentes tonalites emotionnelles a ete privilegiee, melant a la fois peur et reassurance.

Objectives To assess (1) the clinical issues addressed during the medical encounter; (2) the feasibility of the process of shared decision-making in clinical practice and (3) patients’ desires concerning the question of ‘who should take the decision in breast cancer treatments?’ Design Qualitative pilot study based on clinical encounters using decision boards and information booklets. Setting Centre Leon Berard, a comprehensive cancer centre in the Rhone-Alpes region of France. Participants One breast cancer surgeon and 22 breast cancer patients. Main outcome measures Analysis of patients’ reactions to a shared decision-making process concerning surgery and chemotherapy, and analysis of its practical feasibility (i.e. duration of the consultations). Results (1) Twenty-one patients participated in the decision regarding surgery; all chose conservative treatment; 15 patients had their own say about chemotherapy (nine chose no chemotherapy, six chose chemotherapy). (2) Participating in treatment choice generated anxiety for a majority of patients. Some were dissatisfied because they had to make a choice and consequently to give up the other option. Finally, some were uncertain about making the right choice. Nevertheless, most were satisfied with the information given and the possibility of participating to the treatment decision-making process. (3) The total duration of the entire process of shared decision-making is consistent with the time spent with patients with such a severe disease. Discussion/conclusion Most of the patients expressed their satisfaction regarding the possibility to participate in treatment decision-making, knowing that offering treatment choice is very unusual in France. From this pilot study it appears that shared decision-making is feasible in clinical practice. Nevertheless, a quantitative study based on a large sample of patients is necessary to: (1) confirm this hypothesis, (2) ensure that patients are willing to participate in their treatment decision-making, and (3) measure the potential benefits related to this participation.

Resume Le but de cette etude est de permettre a des patientes atteintes d’un cancer du sein d’exprimer leurs preferences par rapport au traitement de chimiotherapie adjuvante et d’observer comment elles percoivent et ressentent l’information et la situation de choix. Le protocole a ete propose a dix femmes, atteintes d’un cancer du sein sans envahissement ganglionnaire axillaire. Nous avons choisi d’adopter la methode du tableau de decision, compose d’un guide d’entretien ecrit et d’une aide visuelle, afin d’informer les patientes de la maniere la plus objective possible, dans le but de leur permettre de choisir entre deux options, l’une avec et l’autre sans chimiotherapie. A l’aide d’entretiens realises avec les patientes, nous avons pu etudier comment elles ont apprehende l’information qui leur a ete delivree et de quelle maniere elles ont vecu la situation de choix a laquelle elles ont ete confrontees. Les resultats de cette etude montrent comment les patientes ont elabore leur decision et quels facteurs sont intervenus dans le processus de decision. Cette etude permet de souligner les difficultes liees a l’implication des patientes dans le processus de decision. Le resultat le plus interessant est d’observer comment les patientes elaborent un choix irrationnel, qui n’est pas fonde sur l’information delivree, mais sur l’interpretation de l’intention du chirurgien.

In developed countries, the physician-patient relationship is moving from a paternalistic model to new decision-making models that take patient preferences into account. OBJECTIVES: Our aim was to develop a Decision Board (DB) and to test its acceptability in a French Regional Cancer Centre regarding the decision on whether or not to use chemotherapy after surgery in postmenopausal women with breast cancer. This paper presents the development process for this instrument and reports the pretesting phase, as well as the corresponding results. METHODS: A working group was created with oncologists, psychologists and economists. Following the first phase, i.e. the development process, a first version of the instrument was presented to health professionals. Their feedback led to important modifications of the instrument. The DB was then presented to experienced patients, which resulted in slight changes. The second phase consisted of pretesting the comprehension, internal and across-time consistency of the DB on healthy volunteers. RESULTS: The DB was pretested in a group of 40 healthy volunteers. Eighteen respondents chose chemotherapy and 22 chose not to have chemotherapy. Comprehension rates were very high (>/=87.5%). Internal consistency was assessed considering option attitudes based on outcomes and option attitudes based on process. Women shifted their choices in a predictable way. Across-time consistency was appraised using the test-retest method with Visual Analog Scales. The Intraclass Correlation Coefficient was 0.97. DISCUSSION-CONCLUSION: Due to cultural differences, the DB developed in our French Cancer Centre is quite different from the DBs previously developed elsewhere. Our instrument showed good comprehension and consistency properties, which are corroborated by the DB literature. Whether our DB is acceptable for patients with breast cancer must still be tested. Patients' reactions will tell us which type of decision-making model is at work. Further research is needed in order to explore the shared decision-making process and clarify the concept.

Objectif Afin de favoriser l’adaptation au traitement par pression positive continue (PPC), un document d’information, destine aux personnes debutant leur prise en charge, a ete elabore. Les informations utiles, mais aussi la maniere de les transmettre ont pu etre identifiees a l’aide d’un groupe de patients. Methodes Les donnees ont ete recueillies dans le cadre d’un Focus Group, constitue de cinq patients, d’une conjointe et d’un volontaire sain. Une analyse thematique de la retranscription verbatim du Focus Group a ete effectuee par deux juges, l’analyse consistant a selectionner et organiser en categories le contenu substantif. Resultats Le Focus Group a permis d’identifier : (1) les objectifs vises par le document – entrainer une prise de conscience quant au mecanisme physiologique et aux consequences induits par le SAOS, permettre la reconnaissance de la symptomatologie, des facteurs de risque et de la chronicite du SAOS, rassurer et motiver au sujet du traitement. (2) La dimension emotionnelle, c’est-a-dire la maniere dont l’information doit etre delivree pour repondre a ces objectifs. Celle-ci se definit par la quantite d’information, la terminologie, la presentation, la syntaxe, la grammaire et les illustrations. Conclusion La dimension emotionnelle de l’information necessite d’etre prise en compte. Elle represente, en effet, un element majeur dans la comprehension et l’integration des donnees utiles pour les patients, dans l’objectif d’une meilleure adaptation au traitement. Ces resultats permettent de formuler des recommandations aidant les praticiens a informer les patients.

We report our experience in developing written patient information in the field of genetic oncology using a focus group approach. A scientific document addressing the issue about the finding of negative (i.e., inconclusive) results in BRCA1/2 diagnostic genetic testing was elaborated in three stages. The initial version written by a scientific committee was discussed in two focus group sessions, and then rewritten to incorporate the comments and suggestions collected. The discussions during focus group meetings were analyzed using a specific analysis grid exploring five dimensions. The input provided from the focus group greatly improved the initial version, leading to the production of a document containing appropriate scientific information that was accessible to patients. Focus groups are useful tools for developing good-quality documents in the complex setting of genetic oncology.

In the frame of cancer screening, we present a new psychological concept elaborated from our clinical practice of women affected by a breast cancer. The experience of these women is different depending on whether the cancer is discovered in an asymptomatic context or not. We introduce the concept of "anticipatrice medicine" in order to define the implication of diagnosis precocity on the therapeutic strategy, because of a modification of some main parameters which make up the ordinary personal concept. These parameters are : the time in which disease anticipates the symptom and the space where the treatment anticipates the disease. We discuss the paradoxical experience of screening which imposes a medical intervention before any symptom that is for the patient to be treated before any feeling of the disease, and to experience the disease through the experience of a treatment. The different elements of this paradoxical experience are successively identified and analysed. Finally we propose four directions of research in the field of interaction between human and medical technologies.

Objective: Qualitative interviews were conducted with pharmacists in hospitals and clinics in the Rhone-Alpes region of France to determine the role of economic data when selecting medicines for formularies, to identify barriers to the use of this information and to study to what degree a healthcare establishment's financing system influences the use of this data.Method: A stratified sample of healthcare establishments with over 100 short-stay beds were included: (1) thirteen public and semi-private hospitals financed through annual global budgets and (2) six private clinics financed on a fee-for-service basis. Interviews were carried out between October 1999 and January 2000, and coded independently by two researchers.Main outcome measure: A multiple correspondence analysis was performed to compare the two groups of healthcare establishments.Results: The influence of economic data in the decision-making process is limited, for other factors appear to have greater weight: (1) efficacy and safety of medicines (2) relations between decision-makers and the pharmaceutical industry and (3) patient quality of life. Economic data used was mainly related to medication prices and quantities consumed. This data was used in a large number of decisions and seemed to have more importance in hospitals than in clinics. Information related to resources that could be saved by the inclusion of a new medicine on formularies was seldom used and apparently considered less important in hospitals than in clinics. Pharmacoeconomic evaluations were very rarely used. Six barriers to the use of economic data were raised by the pharmacists, including: lack of time, which limits the collection and analysis of such information; insufficient health economics training, an obstacle to decision-makers' analytical capacity; and closed budgets within hospitals.Conclusion: Economic data concerning ‘medication budgets’ appears to have a greater impact in public and semi-private hospitals than in private clinics. Obstacles linked to the decision-making context itself were particularly highlighted, and it can be concluded that in order to increase the use of economic data, it is first necessary to create an environment that is more favourable to its application.

Over recent years, communication within the physician–patient relationship has been profoundly changing. New modes of conveying diagnostic and therapeutic information influence the way in which decisions regarding treatment are made. We propose a critical review of the various theoretical models as presented in the literature, from the paternalistic to the shared decision model, in order to reveal conceptual ambiguities and their related methodological problems. This analysis leads to a project for clarifying these problems through a research protocol based on shared decision-making. Copyright © 2001 John Wiley & Sons, Ltd.

Context: Obstructive Sleep Apnea Syndrome (OSA), a chronic and insidious disease, with severe consequences on quality of life of patients, can lead to cardiovascular complications in the long-term. Continuous Positive Airway Pressure (CPAP) therapy is considered as the most effective treatment because of its effectiveness in reducing OSA with minimal side effects. However, this treatment is palliative, requiring a daily use. CPAP is more visible to patients than their illness, so some patients are in difficulty to become and/ or to stay adherent.Objective: Identify precisely these difficulties, in order to predict and prevent the risks of lower adherence to CPAP therapy.Methods: A first exploratory, observational and longitudinal study was conducted on 204 patients, followed during their first 10 months of treatment, in order to establish profiles of their use, identify factors of lower adherence and develop early detection tools of lower adherence. During three interviews (before the treatment, one month and four months upon treatment), we collected a set of sociodemographic and medico-technical data, paying greater attention to psychosocial factors. In order to identify the factors of acceptability and acceptance of care technology, our work was developed according to the theoretical models of Theory of Planned Behaviors of Ajzen (1989), the Technology Acceptance Model of Davis (1985, 1989) and the Self-Regulation Model of Leventhal (1980, 1997). We experimented in a second study, a psycho-educational intervention, as a support for patient adherence and quality of life. We did a randomized trial of 62 non-adherent patients, randomly divided into three groups (control group, placebo group and intervention group). During this intervention, organized in three individual interviews over one month, we used motivational interviewing techniques and a self-observation diary, targeting the psychosocial factors of the Theory of Planned Behaviors.Results: Our results allowed to identify four distinct profiles of adherence to CPAP treatment: Regular Adherent Users (Profile A), Non-Regular Adherent Users (Profile B), Persistent Non-Adherent Users (Profile C) and Non-Persistant Users (Profile D). These profiles are distinguished by their duration, their regularity and their persistence in using the CPAP treatment. Our results also highlight the need for a sensitive approach to adherence, targeting not only one single behavior, but three behaviors of lower adherence. Subsequently, the biopsychosocial factors of acceptability and acceptance of each profile were identified in order to develop two detection questionnaires, allowing professionals to assess the risk of lower adherence and to intervene early, in order to help patients in need. The biopsychosocial factors, specific to each profile, revealed to be more predictive after one month of experience with CPAP treatment than before its use. Finally, the results of the interventional study underline that repeated information transfer, supported by written documents, and complemented by a holistic approach to patient health issues, are essential elements in supporting adherence to CPAP treatment.Conclusion: The main contribution of our research project is the proposal of a longitudinal typology in four profiles of CPAP adherence. This research has led to the development of several tools for health professionals and provides recommendations for good practice in order to improve patient adherence in the context of OSA., Contexte : Le Syndrome d’Apnées Obstructives du Sommeil (SAOS) est une maladie chronique et insidieuse qui détériore la qualité de vie des patients et peut entrainer des complications cardio-vasculaires à long terme. Le traitement par Pression Positive Continue (PPC) est le traitement de référence en raison de ses bénéfices et de ses moindres effets secondaires. En revanche, il s’agit d’un traitement palliatif, nécessitant une utilisation quotidienne. Ce dernier plus visible pour les patients que la maladie elle-même, certains éprouvent des difficultés à devenir et à rester observants de ce traitement. Objectif principal : Identifier précisément ces difficultés, afin de prédire et prévenir les risques de moindre observance. Méthodes : Une première étude, exploratoire, observationnelle et longitudinale a été menée auprès de 204 patients, suivis au cours des 10 premiers mois de prise en charge, afin d’établir des profils d’utilisation, d’identifier les facteurs d’acceptabilité et d’acceptation induisant une moindre observance, ainsi que de développer des outils de détection précoce de moindre observance. Au cours de trois rencontres (avant le début du traitement, un mois après et quatre mois après), nous avons recueilli un ensemble de facteurs sociodémographiques et médico-techniques, en portant une plus grande attention aux facteurs psycho-sociaux. Notre travail a été élaboré à partir des modèles théoriques de la Théorie du Comportement Planifié d’Ajzen (1989), le Modèle d’Acceptation de la Technologie de Davis (1985, 1989) et le Modèle de l’Autorégulation de Leventhal (1980, 1997), afin d’identifier les facteurs d’acceptabilité et d’acceptation d’une technologie de soin. Pour la seconde étude, nous avons expérimenté une intervention psycho-éducative, comme soutien de l’observance et de la qualité de vie des patients, à partir d’un essai randomisé constitué de 62 patients non-observants, répartis aléatoirement en trois groupes (groupe contrôle, groupe placebo et groupe interventionnel). Au cours de cette intervention, organisée en trois entretiens individuels sur un mois, nous avons utilisé les techniques d’entretien motivationnel ainsi qu’un journal d’auto-observation, ciblant les facteurs psycho-sociaux de la Théorie du Comportement Planifié. Résultats : Nos résultats nous ont permis d’identifier quatre profils d’observance : les Utilisateurs Observants Réguliers (Profil A), les Utilisateurs Observants Non-Réguliers (Profil B), les Utilisateurs Non-Observants Persistants (Profil C) et les Utilisateurs Non-Observants et Non Persistants (Profil D). Ces profils se distinguent par leur durée, leur régularité et leur persistance à utiliser le traitement par PPC, soulignant ainsi la nécessité d’une approche sensible de l’observance, ciblant non pas un comportement, mais des comportements de moindres observances. Les facteurs biopsychosociaux d’acceptabilité et d’acceptation de chacun des profils ont ensuite été identifiés afin d’élaborer deux questionnaires de détection, permettant aux professionnels d’évaluer le risque de moindre observance et d’intervenir précocement. Les facteurs biopsychosociaux, spécifiques à chaque profil, sont révélés plus prédictifs après un mois d’expérience avec le traitement par PPC qu’avant son utilisation. Enfin, les résultats de l’étude interventionnelle suggèrent notamment qu’un transfert d’information renouvelé, étayé par des documents écrits, et complété par une approche globale des problématiques de santé des patients, constituent des éléments essentiels au soutien de l’observance. Conclusion : L’apport principal de notre recherche est la proposition d’une typologie longitudinale en quatre profils d’observance. Cette recherche a permis de développer plusieurs délivrables pour les professionnels de santé et de fournir des recommandations de bonne pratique, afin d’améliorer l’observance de patients.