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Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

ABSTRACT: 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.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.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.There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.

SUBMITTER: Chiarchiaro J

PROVIDER: S-EPMC4628837 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

Chiarchiaro Jared J Ernecoff Natalie C NC Buddadhumaruk Praewpannarai P Rak Kimberly J KJ Arnold Robert M RM White Douglas B DB

Journal of critical care 20150903 6

<h4>Purpose</h4>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.<h4>Materials and methods</h4>We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design feature ...[more]

PMID: 26404957

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Project description:BackgroundAdvance care planning (ACP) and goals of care discussions are important instruments that enable respect for patient autonomy, especially in patients with a life-threatening disease, such as cancer. Despite their well-established benefits, ACP and goals of care discussions are still not frequently performed in clinical oncology practice. Understanding the barriers to this topic is the first step toward developing future interventions that are more likely to improve professional practice and patient satisfaction with care.AimTo explore Brazilian oncologists' barriers to discuss goals of care and advance care planning.MethodsA cross-sectional study was developed to identify Brazilian oncologists' barriers to discussing goals of care and ACP. The Decide-Oncology questionnaire was used to identify the importance of these barriers according to oncologists' perceptions. Participants were asked to rank the importance of various barriers to discussing goals of care, ranging from 1 (extremely unimportant) to 7 (extremely important). A quantitative analysis using descriptive statistics was used, including median and interquartile intervals and a qualitative analysis based on Bardin content analysis of the two open questions.ResultsSixty-six oncologists participated in this study. Most of them perceived the patient and family's related barriers as the most important, such as patients' difficulty in understanding their diagnosis and accepting their prognosis. Physician and external related factors, such as lack of training and lack of time for this conversation, were also described as important barriers. Participants with formal training regarding goals of care communication and with experience in palliative care perceived the lack of patients' advanced directives as a significant barrier and manifested more willingness to participate in decision-making about goals of care. The lack of access and of support for referral to palliative care was also considered a significant barrier for ACP and goals of care discussion.ConclusionThe identification of barriers that limit the discussion of ACP and early palliative care referrals can certainly help to prioritise the next steps for future studies aimed at improving ACP and helping clinicians to better support patients through shared decision-making based on the patient's values and experiences.

Project description:BACKGROUND:Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients' preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and-if appropriate-family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. OBJECTIVE:This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. METHODS:We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs' content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. RESULTS:Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs-10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). CONCLUSIONS:Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

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Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

Publications

Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

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