Sample characteristics
We interviewed nine patients with different chronic diseases, namely with amyotrophic lateral sclerosis (ALS) (one patient), multiple sclerosis (MS) (one patient), chronic obstructive pulmonary disease (COPD) (2 patients), kidney diseases (3 patients), muscular dystrophy (one patient) and stroke (one patient). Furthermore, we interviewed seven relatives of patients with chronic diseases, namely 6 partners in total of patients with kidney disease, cancer, dementia, muscular dystrophy, stroke, and acquired brain injury. In addition, we interviewed one person with a parent with cancer. The interviewees were nine women and seven men from different parts of the Netherlands, with different ages ranging from 24 to 80 years. The interviews lasted approximately 60 min.
Thematic analysis
Both patients with chronic disease and relatives addressed comparable information needs, and they considered ACP and information provision about it important. Most patients and relatives would mainly search for ACP information on the Internet, for example through Google. They would consult websites of patient organizations, their healthcare professionals, their hospital or governments.
Seven main themes were identified when respondents were asked about their information needs. Representative quotations were chosen to illustrate these themes and subthemes. The coding tree with the main themes/information needs and sub themes/information needs is presented in Appendix A.
Disease trajectory and quality of life
The interviewees valued information about the disease process, and how to cope with it. Furthermore, the interviewees would look for support in accepting the disease. Topics considered as relevant were thinking about what is important in life, quality of life, and the impact of their chronic disease on their life. Search terms included: “What is [the disease]”; “Progression of [the disease]”; “How to live with [the disease]”; and “Consequences of [the disease] on my life”.
Relative 1 (aged 61), when asked about what content and information he/she would consider important on a website for ACP. Subtheme “Thinking about what is important in life and about quality of life”: “The questions that people want answers to, I think that these are questions that are very close to them. And those very big life questions about whether or not to resuscitate, or suppose that I am in a coma or you name it... what happens to me then... I think it is much more about the quality of life. Quality of life has much more to do with what I can do on a daily basis, what does my day look like, what I can do, what I cannot do.”
Support in medical treatment decisions
The interviewees preferred information on the impact of treatments on their life, and they wanted support in making treatment decisions. The interviewees mentioned that information about end-of-life care, cardiopulmonary resuscitation and non-treatment should be provided. Search terms included: “Hospital”; “Treatments”; “Treatment plan”; “Impact of the treatment” and “Information about euthanasia”.
Relative 3 (62 years), subtheme “Support in making treatment decisions”: “Well, I think it is good to ask people whether they want to be resuscitated when they would be in a certain disease stage, or at an older age. It would be good to provide information about what this entails. (…) Often people don’t know the risks of resuscitation. When people receive this information, they can make a conscious decision about this. It is also important to provide information on mechanical ventilation and about what this is, how this is applied and what the effects are. This information should be described in easy language.”
Practical support in arranging care
The interviewees preferred practical information on how to arrange their future care and housing. They preferred information about where and how to get support and reliable information about their disease and care. Some interviewees would look for financial information, such as the possible costs of healthcare or financial support options. Search terms included: “Home care”; “Care plan”; “Care tools”; and “Practical information”.
Patient 2 (age 61), subtheme “Practical information on arranging care and housing”: “I think addressing people’s values on the website is already very important. But I think a topic like “living at home” is also important, for example, how can you adapt your home? Can you remove thresholds in your house, and are you prepared to adapt your house if your health condition worsens? I think that is often a larger problem to people.”
Guidance in ACP
Several interviewees were unfamiliar with the term “advance care planning” prior to the interview and these interviewees would rather search for information about health related problems or their disease. However, most interviewees mentioned to have experience with ACP related topics such as discussing preferences with relatives and healthcare professionals, and thinking about preferred treatment and care in the future. Those who were familiar, would search for information about the concept of ACP and why it is important. The interviewees stressed the importance of adapting ACP to individual needs, since patients’ coping styles differ, and patients have different cultural backgrounds. Many interviewees considered it important to be encouraged by the information, their healthcare providers or relatives to think about ACP, to take a pro-active role in ACP, and to take responsibility for their health and healthcare. Some interviewees preferred information about rules and instructions for the completion of advance directives and several interviewees mentioned the importance of the revision of preferences over time. Search terms related to this information need included: “Advance care planning”; “What is ACP”; the Dutch term “Vroegtijdige zorgplanning”; “Care in the future”; “How can I control my care?”; “Prepare for the future”; “Recording of wishes”; and “Advance Directive”.
Patient 4 (age 42), subtheme “Importance of being encouraged to do ACP and to take a pro-active role in ACP”: “I took the initiative to start the conversation with my general practitioner about my treatment and care preferences. Yes, I think that you have to start this [ACP] from your own motivation. Because you have to come up with these preferences on your own. That it is something you have to think about independently. Yes, what if… yes, what do I want? What do I not want? And that is a process, you do not know that the first time. You don't know that in the first week, you may not even know that in the first year.”
How to communicate treatment and care preferences
The interviewees preferred information on how to involve family in ACP, and how to start conversations with family and with healthcare professionals. Some interviewees mentioned that patients should be encouraged to start these conversations. Some interviewees wanted information about rules and instructions for the appointment of a healthcare representative.
Patient 9 (age 53), subtheme “Tips to start the conversation with healthcare professionals”: “Such a website should come up with a number of example questions. Namely, if you want to have a care planning meeting with your doctor, there is a certain process, for example if it is about whether you have to undergo surgery. A number of example questions on such a website would help people. I know there are health insurance companies that make lists of questions you can write down before visiting your doctor, which is very useful. It often happens to me that I forget to ask important questions to my doctor.”
Peer support and sharing experiences
The interviewees considered peer support and experience stories as helpful. The interviewees would also search for relevant patient associations to find practical- and peer support in their disease and care.
Patient 9 (age 53), subthemes “Information about patient associations” and “Information about peer support”: “Well, in my case, I just started to search for information at websites of [two disease specific] patient associations and started to look from there. Those were two main sources for me. At the [third disease specific] patient association, I started to look further and then I also looked for peer support.”
Information for relatives
The interviewees (patients as well as relatives) also preferred information for relatives, for example on how they could support their chronically ill relative. Search terms were “How does the family cope with illness of a relative?” and “What is the impact of [the disease] on the family?”
Relative 3 (age 62), main theme “Information for relatives”: “Well, in addition to all the information that is available for patients... it is also important for me as a relative, to know where I can go if I experience problems and my partner or child isn't open to discuss these. I would like to receive information about how I can cope with the situation and what I can do, and receive contact information about where I can go if I can’t take it anymore.”
All mentioned search terms that the interviewees would use while searching ACP information on the Internet, are presented in Fig. 1.