Jared Chiarchiaro1, Natalie C Ernecoff2, Praewpannarai Buddadhumaruk2, Kimberly J Rak2, Robert M Arnold3, Douglas B White4. 1. Division of Pulmonary, Allergy, and Critical Care Medicine, University of Pittsburgh, Pittsburgh PA; Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, PA. Electronic address: chiarchiaroj@upmc.edu. 2. Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, PA. 3. Section of Palliative Care and Medical Ethics, Department of Medicine, University of Pittsburgh, Pittsburgh PA. 4. Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh PA; Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, PA; Program on Ethics and Decision Making in Critical Illness, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, PA.
Abstract
PURPOSE: There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease. MATERIALS AND METHODS: We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design features of a Web-based advance care planning tool. Participants also rated the tool's acceptability and potential usefulness. We analyzed the interviews with modified grounded theory and validated themes through member checking. RESULTS: Stakeholders highly rated the acceptability (median, 5; interquartile range, 5-5) and potential usefulness (median, 5; interquartile range, 4-5) of a Web-based tool. Interviewees offered several suggestions: (1) use videos of medical scenarios and patient narratives rather than text, (2) include interactive content, and (3) allow the user control over how much they complete in 1 sitting. Participants identified challenges and potential solutions, such as how to manage the emotional difficulty of thinking about death and accommodate low computer literacy users. CONCLUSIONS: There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.
PURPOSE: There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease. MATERIALS AND METHODS: We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design features of a Web-based advance care planning tool. Participants also rated the tool's acceptability and potential usefulness. We analyzed the interviews with modified grounded theory and validated themes through member checking. RESULTS: Stakeholders highly rated the acceptability (median, 5; interquartile range, 5-5) and potential usefulness (median, 5; interquartile range, 4-5) of a Web-based tool. Interviewees offered several suggestions: (1) use videos of medical scenarios and patient narratives rather than text, (2) include interactive content, and (3) allow the user control over how much they complete in 1 sitting. Participants identified challenges and potential solutions, such as how to manage the emotional difficulty of thinking about death and accommodate low computer literacy users. CONCLUSIONS: There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.
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