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

J Crit Care. 2015 Dec;30(6):1418.e7-1418.e12. doi: 10.1016/j.jcrc.2015.09.001. Epub 2015 Sep 3.

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.

Keywords: Communication; Decision making; End of life care; Public health.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Advance Care Planning*
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Communication
  • Decision Making*
  • Decision Support Systems, Clinical*
  • Female
  • Humans
  • Internet
  • Lung Diseases / mortality
  • Lung Diseases / psychology*
  • Male
  • Middle Aged
  • Public Health