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Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

BACKGROUND: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their...

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Autores principales: van der Smissen, Doris, Rietjens, Judith A. C., van Gemert-Pijnen, Lisette, van Dulmen, Sandra, van der Heide, Agnes, Korfage, Ida J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8164830/
https://www.ncbi.nlm.nih.gov/pubmed/34053435
http://dx.doi.org/10.1186/s12904-021-00770-x
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author van der Smissen, Doris
Rietjens, Judith A. C.
van Gemert-Pijnen, Lisette
van Dulmen, Sandra
van der Heide, Agnes
Korfage, Ida J.
author_facet van der Smissen, Doris
Rietjens, Judith A. C.
van Gemert-Pijnen, Lisette
van Dulmen, Sandra
van der Heide, Agnes
Korfage, Ida J.
author_sort van der Smissen, Doris
collection PubMed
description BACKGROUND: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. METHODS: We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. RESULTS: We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. CONCLUSIONS: We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00770-x.
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spelling pubmed-81648302021-06-01 Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study van der Smissen, Doris Rietjens, Judith A. C. van Gemert-Pijnen, Lisette van Dulmen, Sandra van der Heide, Agnes Korfage, Ida J. BMC Palliat Care Research BACKGROUND: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. METHODS: We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. RESULTS: We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. CONCLUSIONS: We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00770-x. BioMed Central 2021-05-30 /pmc/articles/PMC8164830/ /pubmed/34053435 http://dx.doi.org/10.1186/s12904-021-00770-x Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
van der Smissen, Doris
Rietjens, Judith A. C.
van Gemert-Pijnen, Lisette
van Dulmen, Sandra
van der Heide, Agnes
Korfage, Ida J.
Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title_full Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title_fullStr Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title_full_unstemmed Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title_short Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
title_sort information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8164830/
https://www.ncbi.nlm.nih.gov/pubmed/34053435
http://dx.doi.org/10.1186/s12904-021-00770-x
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