Dataset Information

Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.

ABSTRACT:

Background

During the last few decades, patients' rights have been reinforced in many countries by acts of law. Measures now include health care proxies to uphold the doctor-patient relationship and advance directives for end-of-life patients. These could be relevant tools as early as the initial diagnosis of haematological malignancies because of the uncertain disease course. The aim of this research was to assess the factors associated with the designation of a proxy and writing advance directives by patients in a haematology department in France.

Methods

After a specific programme to encourage discussions about end-of-life preferences, we conducted a mixed-methods study comprising retrospective analysis of a random sample of 200 patients' medical records, crossed with a qualitative analysis of the content of advance directives. Statistical analysis was performed by the RKward V 0.6.1 software with 0.05 denoting significance. The study was performed and presented in accordance with the STROBE guidelines. A thematic analysis of the advance directives was performed by two researchers.

Results

A total of 197 medical records were evaluable. The mean age of the patients was 66 years (range: 18-91). Nearly 2/3 of them (64.5%) designated a proxy, 6.1% wrote advance directives, and 8.1% and 4.6% expressed a wish to meet a religious representative or a volunteer, respectively. The 2-year survival rate was 78.4% [95%CI: 68.2-90.2]. Patients who wrote advance directives were statistically older (p <0.00025). Patients who wrote an advance directive were more likely to have expressed a wish to meet a religious representative (p <0.001) or a volunteer (p = 0.003). Marital status was a significant factor in appointing a proxy (p = 0.04).

Conclusions

To the best of our knowledge, this is the first paper to identify influencing factors for proxies and advance directives in a homogenous population of patients with haematological malignancies. Most patients chose a proxy. However, despite several training programmes for the carers and a care planning programme, few patients wrote advance directives. Our findings suggest that influencing factors are advanced age and a wish to see a religious representative. This study highlights the importance of oral communication about end-of-life issues between carers, patients and their relatives.

SUBMITTER: Trarieux-Signol S

PROVIDER: S-EPMC4391307 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Publications

Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.

Trarieux-Signol Sophie S Moreau Stéphane S Gourin Marie-Pierre MP Penot Amélie A Edoux de Lafont Geoffroy G Preux Pierre-Marie PM Bordessoule Dominique D

BMC palliative care 20141211

<h4>Background</h4>During the last few decades, patients' rights have been reinforced in many countries by acts of law. Measures now include health care proxies to uphold the doctor-patient relationship and advance directives for end-of-life patients. These could be relevant tools as early as the initial diagnosis of haematological malignancies because of the uncertain disease course. The aim of this research was to assess the factors associated with the designation of a proxy and writing advanc ...[more]

PMID: 25859160

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Project description:BackgroundAdvance care planning, including advance directives, is an important tool that allows patients to express their preferences for care if they are no longer able to express themselves. We developed Accordons-nous, a smartphone app that informs patients about advance care planning and advance directives, facilitates communication on these sensitive topics, and helps patients express their values and preferences for care.ObjectiveThe first objective of this study is to conduct a usability test of this app. The second objective is to collect users' critical opinions on the usability and relevance of the tool.MethodsWe conducted a usability test by means of a think-aloud method, asking 10 representative patients to complete 7 browsing tasks. We double coded the filmed sessions to obtain descriptive data on task completion (with or without help), time spent, number of clicks, and the types of problems encountered. We assessed the severity of the problems encountered and identified the modifications needed to address these problems. We evaluated the readability of the app using Scolarius, a French equivalent of the Flesch Reading Ease test. By means of a posttest questionnaire, we asked participants to assess the app's usability (System Usability Scale), relevance (Mobile App Rating Scale, section F), and whether they would recommend the app to the target groups: patients, health professionals, and patients' caring relatives.ResultsParticipants completed the 7 think-aloud tasks in 80% (56/70) of the cases without any help from the experimenter, in 16% (11/70) of the cases with some help, and failed in 4% (3/70) of the cases. The analysis of failures and difficulties encountered revealed a series of major usability problems that could be addressed with minor modifications to the app. Accordons-nous obtained high scores on readability (overall score of 87.4 on Scolarius test, corresponding to elementary school level), usability (85.3/100 on System Usability Scale test), relevance (4.3/5 on the Mobile App Rating Scale, section F), and overall subjective endorsement on 3 I would recommend questions (4.7/5).ConclusionsThis usability test helped us make the final changes to our app before its official launch.

Project description:BackgroundAccordons-nous, a smartphone app, was developed to support patients in the advance care planning (ACP) process. The app raises awareness and facilitates communication on this sensitive topic. It helps patients express their values and preferences for care and write their advance directives (AD).ObjectiveMeasure the impact of distributing Accordons-nous on patients' propensity to engage in the ACP process, compared with the distribution of a leaflet. A secondary objective was to test the effect of socio-demographic factors (age, health status, gender, level of education) on propensity to engage in ACP.MethodsPre-post randomized control study. Participants were patients approached in medical waiting rooms. They received the app (treatment) or an information leaflet (control). They responded to two questionnaires: one at recruitment and a second 3-4 weeks later. Improvement on four variables relevant to ACP was measured: reported contemplation of an event relevant to ACP; decision about treatment in case of that event; discussion about it with relatives or health care professionals; writing advance directives. Statistical analysis included between-group comparisons of pre-post differences with 2-sample tests for equality of proportions and logistic regression models.ResultsFour hundred seventy three participants were recruited and full responses obtained from 312. Overall, the intervention (control and treatment together) had a positive effect on the mean reported ACP engagement for all variables: new or renewed contemplation 54%; increase in decision 8%, discussion 11%, and writing 1%, compared to the baseline. Compared to the control (leaflet), the treatment group (app) had a larger effect size for all variables: between-group difference in contemplation + 11% (logistic regression, p = .05), decision + 1% (but p > .05 on this variable), discussion + 5% (p = .05), and writing AD + 5% (p = .03). Moreover, greater age was positively correlated with having written AD at inclusion (21% among retired compared to 2% among young adults) and with the propensity to write AD after our intervention (logistic regression, p = .001). Other factors tested (frequency of consultations, gender, level of education) had no effect on participants' ACP engagement.ConclusionsWhen distributed without specific counselling, the tool increased reported ACP engagement, although effect sizes remain modest. Further studies are needed to investigate whether the app could generate greater ACP engagement if used by professionals in dedicated ACP consultations.

Dataset Information

Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.

Background

Methods

Results

Conclusions

Publications

Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.

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