Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Currently in Japan, discontinuing an invasive mechanical ventilator (IMV) is illegal; therefore IMV-related decision making is a crucial issue. This study examined IMV decision-making factors and psychological conflict in 50 patients with amyotrophic lateral sclerosis. The Herth Hope Index was used for the assessment of pre- and post-IMV conflict. Interviews identified some decision-making factors: patient’s decision, patient’s and family’s mutual decision, family’s decision, and emergency-induced without patient’s or family’s consent. Participants who experienced no IMV-related regret received sufficient prior IMV education from physicians and nurses, and time for reflection and family consultation. Their hope was similar to their pre-onset levels. Patients who received no prior IMV education accepted treatment as a natural progression. Their hope levels were lower than pre-onset. Those who received only a brief prior IMV explanation rejected the ventilator, experiencing regret if they were given an emergency IMV. Their hope levels were among the lowest. However, some of these patients managed to overcome their regret through being helped by nurses. Sufficient physician explanation and nursing advocacy for autonomous patient decision making are critical for improving hope in this patient group.

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A Typology of Patients Based on Decision-Making Styles: Cross-Sectional Survey Study (Preprint)

10.2196/preprints.15332 ◽

2019 ◽

Author(s):

Mary Anne FitzPatrick ◽

Alexandra Claudia Hess ◽

Lynn Sudbury-Riley ◽

Peter Johannes Schulz

Keyword(s):

Health Care ◽

Decision Making ◽

Health Information ◽

Health Professionals ◽

Online Health Information ◽

Cross Sectional ◽

Patient Decision Making ◽

Health Care Practitioners ◽

Patient Decision ◽

Decision Making Styles

BACKGROUND Although previous research shows broad differences in the impact of online health information on patient-practitioner decision making, specific research is required to identify and conceptualize patient decision-making styles related to the use of online health information and to differentiate segments according to the influence of online information on patient decision making and interactions with health professionals. OBJECTIVE This study aimed to investigate patients’ decision making in relation to online health information and interactions with health care practitioners. We also aimed to present a typology of patients based on significant differences in their decision making. METHODS We applied a large-scale cross-sectional research design using a survey. Data, generated using a questionnaire that was administered by companies specializing in providing online panels, were collected from random samples of baby boomers in the United Kingdom, the United States, and New Zealand. The total sample comprised 996 baby boomers born between 1946 and 1964, who had used the internet in the previous 6 months to search for and share health-related information. Data were analyzed using hierarchical cluster analysis and confirmatory factor analysis, as well as one-way analysis of variance, chi-square tests, and paired sample <italic>t</italic> tests. RESULTS Analyses identified 3 key decision-making styles that served as the base for 4 unique and stable segments of patients with distinctive decision-making styles: the Collaborators (229/996, 23.0%), the Autonomous-Collaborators (385/996, 38.7%), the Assertive-Collaborators (111/996, 11.1%), and the Passives (271/996, 27.2%). Profiles were further developed for these segments according to key differences in the online health information behavior, demographics, and interactional behaviors of patients. The typology demonstrates that collaborative decision making is dominant among patients either in its pure form or in combination with autonomous or assertive decision making. In other words, most patients (725/996, 72.8%) show significant collaboration in their decision making with health care professionals. However, at times, patients in the combination Autonomous-Collaborative segment prefer to exercise individual autonomy in their decision making, and those in the combination Assertive-Collaborative segment prefer to be assertive with health professionals. Finally, this study shows that a substantial number of patients adopt a distinctly passive decision-making style (271/996, 27.2%). CONCLUSIONS The patient typology provides a framework for distinguishing practice-relevant and addressable segments with important implications for health care practitioners, including better-targeted communication programs for patients and more successful outcomes for health care services in the long term.

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Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Health Expectations ◽

10.1111/hex.12169 ◽

2013 ◽

Vol 18 (5) ◽

pp. 1769-1782 ◽

Cited By ~ 12

Author(s):

Anne Hogden ◽

David Greenfield ◽

Peter Nugus ◽

Matthew C Kiernan

Keyword(s):

Decision Making ◽

Amyotrophic Lateral Sclerosis ◽

Multidisciplinary Care ◽

Lateral Sclerosis

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Optimizing patient autonomy in amyotrophic lateral sclerosis: inclusive decision-making in multidisciplinary care

Neurodegenerative Disease Management ◽

10.2217/nmt.13.71 ◽

2014 ◽

Vol 4 (1) ◽

pp. 1-3 ◽

Cited By ~ 4

Author(s):

Anne Hogden

Keyword(s):

Decision Making ◽

Amyotrophic Lateral Sclerosis ◽

Patient Autonomy ◽

Multidisciplinary Care ◽

Lateral Sclerosis

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A Typology of Patients Based on Decision-Making Styles: Cross-Sectional Survey Study

Journal of Medical Internet Research ◽

10.2196/15332 ◽

2019 ◽

Vol 21 (11) ◽

pp. e15332 ◽

Cited By ~ 2

Author(s):

Mary Anne FitzPatrick ◽

Alexandra Claudia Hess ◽

Lynn Sudbury-Riley ◽

Peter Johannes Schulz

Keyword(s):

Health Care ◽

Decision Making ◽

Health Information ◽

Health Professionals ◽

Online Health Information ◽

Cross Sectional ◽

Patient Decision Making ◽

Health Care Practitioners ◽

Patient Decision ◽

Decision Making Styles

Background Although previous research shows broad differences in the impact of online health information on patient-practitioner decision making, specific research is required to identify and conceptualize patient decision-making styles related to the use of online health information and to differentiate segments according to the influence of online information on patient decision making and interactions with health professionals. Objective This study aimed to investigate patients’ decision making in relation to online health information and interactions with health care practitioners. We also aimed to present a typology of patients based on significant differences in their decision making. Methods We applied a large-scale cross-sectional research design using a survey. Data, generated using a questionnaire that was administered by companies specializing in providing online panels, were collected from random samples of baby boomers in the United Kingdom, the United States, and New Zealand. The total sample comprised 996 baby boomers born between 1946 and 1964, who had used the internet in the previous 6 months to search for and share health-related information. Data were analyzed using hierarchical cluster analysis and confirmatory factor analysis, as well as one-way analysis of variance, chi-square tests, and paired sample t tests. Results Analyses identified 3 key decision-making styles that served as the base for 4 unique and stable segments of patients with distinctive decision-making styles: the Collaborators (229/996, 23.0%), the Autonomous-Collaborators (385/996, 38.7%), the Assertive-Collaborators (111/996, 11.1%), and the Passives (271/996, 27.2%). Profiles were further developed for these segments according to key differences in the online health information behavior, demographics, and interactional behaviors of patients. The typology demonstrates that collaborative decision making is dominant among patients either in its pure form or in combination with autonomous or assertive decision making. In other words, most patients (725/996, 72.8%) show significant collaboration in their decision making with health care professionals. However, at times, patients in the combination Autonomous-Collaborative segment prefer to exercise individual autonomy in their decision making, and those in the combination Assertive-Collaborative segment prefer to be assertive with health professionals. Finally, this study shows that a substantial number of patients adopt a distinctly passive decision-making style (271/996, 27.2%). Conclusions The patient typology provides a framework for distinguishing practice-relevant and addressable segments with important implications for health care practitioners, including better-targeted communication programs for patients and more successful outcomes for health care services in the long term.

Download Full-text