Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

The Web-Based Advance Care Planning Program "Explore Your Preferences for Treatment and Care": Development, Pilot Study, and Before-and-After Evaluation.

BACKGROUND: Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. OBJECTIVE: We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. METHODS: The program "Explore your preferences for treatment and care" was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. RESULTS: ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). CONCLUSIONS: We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP.

Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries.

PURPOSE: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries. METHOD: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations. RESULTS: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts. CONCLUSION: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users.

Measuring advance care planning behavior in Dutch adults: translation, cultural adaptation and validation of the Advance Care Planning Engagement Survey.

BACKGROUND: Advance care planning (ACP) enables people to define, discuss, and record preferences for treatment and care. Measures of ACP behavior are lacking in the Netherlands. We aimed to translate, culturally adapt and validate the 34-item ACP Engagement Survey into Dutch. METHODS: Following validation guidelines, we tested content validity, internal consistency, reproducibility, construct validity, interpretability and criterion validity among persons with and without chronic disease. RESULTS: Forward-backward translation indicated the need of only minor adaptations. Two hundred thirty-two persons completed baseline and retest surveys; 121 were aged ≥60 years. Persons with chronic disease (n = 151) considered the survey more valuable than those without (66 vs. 59, p < 0.001, scale of 20-100), indicating good content validity. Internal consistency (Cronbach's alpha: 0.97) and reproducibility (intraclass correlation: 0.88) were good. Total ACP Engagement was higher among persons with chronic disease than those without (2.9 vs. 2.4, p < 0.01, scale of 1 to 5), indicating good psychometric support for construct validity and interpretability. Positive correlations of the ACP Engagement Survey and the General Self-Efficacy survey indicated good criterion validity (p < 0.05). CONCLUSIONS: This study provided good psychometric support for the validity and reliability of the Dutch 34-item ACP Engagement Survey. This instrument can be used to assess involvement in ACP in adults with and without chronic disease.

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 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.

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review.

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.