How medical services mask provision of non-medical supportive care in palliative oncology ?

OBJECTIVES In the context of cancer, non-medical supportive care improves quality of life. While policymakers expect it to be cheaper than high-tech medical care, we hypothesized that it is in fact embedded in and camouflaged by hospital medical services. METHODS In a cross-sectional descriptive study, we conducted qualitative interviews with healthcare providers, patients and family caregivers in France. We first performed a functional analysis to identify non-medical supportive care functions provided or received and then developed a one day cohort study of patient in hospital or hospital at home to determine which non-medical care functions were provided and in what priority. RESULTS 79 healthcare providers, patients and family caregivers were interviewed and 109 patient files were analysed in the cohort study. Providers declared they were highly solicited for non-medical reasons like moral, emotional support, or respite, that we listed and grouped into 5 categories: physical, moral, or financial support, coordination of care and dealing with legal and technical constraints. The cohort study determined that 30 patients (27%) were hospitalised for non-medical reasons. A diversity of services were provided: physical support (n=4), moral support (n=13), financial support (n=1), coordination of care dysfunction (n=12), legal constraint (n=1). CONCLUSION Medical care is not sufficient for the support of advanced cancer patients. Even though equivalence of care is guaranteed at home, non-medical services are provided within hospital because they are not provided or funded anywhere else. Non-medical care performs a variety of social, financial, psychological and legal functions needed by patients and family caregivers

Framing effects of risk communication in health-related decision making. Learning from a discrete choice experiment

Working Paper GATE 2009-21Background How to communicate uncertainty is a major concern in medicine and in health economics. We aimed at studying the framing effects of risk communication on stated preferences in a discrete choice experiment (DCE) performed to elicit women's preferences for Hormone Replacement Therapy. Methods Two versions of the questionnaire were randomly administered to respondents. Multiple risks were expressed as natural frequencies using either a constant reference class (Design 1) or variable reference classes (Design 2). We first tested whether Design 1 would impose a lower cognitive burden than Design 2. We then examined whether the two designs resulted in different utility model estimates. Results Design 1 improved consistency (monotonicity and stability). However, rates of dominance or intransitive responses did not differ across designs. Design 1 decreased women's sensitivity to the risk of fractures and increased their sensitivity to the risk of breast cancer as compared to all other attributes. Discussion Framing effects of risk communication on stated preferences may be a major problem in the design of DCEs. More research is needed to determine whether our findings are replicable and to further investigate the normative question of how to improve risk communication in health-related decision-making

Validité théorique de la Méthode des Choix Discrets : le cas du Traitement Hormonal substitutif de la Ménopause

La Méthode des Choix Discrets (MCD) est utilisée pour analyser les choix des consommateurs. Sous certaines hypothèses de comportement, elle permet d'expliciter les arbitrages des individus entre les attributs d'un bien ou d'un service. Le Traitement Hormonal substitutif de la Ménopause (THM) est caractérisé par des risques et bénéfices de santé et par un coût monétaire. Nous explorons dans cette situation la capacité de la MCD à révéler les préférences individuelles, en commençant par étudier sa validité théorique. Les comportements sont-ils conformes aux hypothèses standard : cohérence interne, transitivité et stabilité des préférences, absence de préférences lexicographiques, absence d'effet de présentation ? Méthode: Onze paires de scénarios ont été construites à partir d'attributs du THM : troubles climatériques, fractures, cancer colorectal, cancer du sein, risque cardiaque, risque thromboembolique, coût. Les variables sociodémographiques et médicales des femmes ont été collectées. Deux versions du questionnaire ont été développées pour tester les effets de présentation des probabilités. La validité théorique a été testée à l'aide de statistiques descriptives. Résultats: 462 femmes de la Région Rhône-Alpes âgées de 45 à 65 ans ont renvoyé leur questionnaire. La cohérence interne, la transitivité, et la stabilité des préférences sont observées dans de larges proportions (95%, 97% et 88% des femmes respectivement.). Seules 12% des femmes expriment des préférences lexicographiques. Aucun effet de présentation sur la qualité des réponses n'est détecté. Conclusion: Compte tenu de la bonne conformité des comportements aux hypothèses, il sera possible d'estimer une fonction d'utilité et de discuter les préférences des femmes pour le THM ainsi que leur disposition à payer.hypothèses de comportement ; méthode des choix discrets ; révélation des préférences individuelles en santé ; traitement hormonal substitutif de la ménopause

Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

Objectives To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). Design Scale development study, involving construct, item and scale development, validation and reliability testing. Setting There has been increasing use of decision support technologies – adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. Methods Scale development study, involving construct, item and scale development, validation and reliability testing. Participants Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. Results IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). Conclusions This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark