A total of 25 patients and five HCPs participated in this study (Tables 1 and 2).

Table 1 Characteristics of patientsTable 2 Characteristics of HCPsInterviews

In total, 20 patients participated in an interview. The interviews were conducted on average 8 days (range 0–21 days) after the consultation and had a mean duration of 30 min (range 15 to 62 min). All HCPs were interviewed and these interviews lasted on average 22 min (range 16 to 31 min). No new information was yielded from the last three interviews, indicating that data saturation was reached.

Completing the PROM

Overall, patients considered the PROM to be relevant, clear, comprehensive and easy to complete. No problems were encountered with regard to the digital invite to access the PROM. Some patients perceived certain items as less relevant or preferred additional response options.

The questions are relevant, yes, complete as well from the mental state to the physical state. — P01

HCPs had similar experiences and mentioned that the open-ended question was not often used, suggesting that the items covered all relevant topics.

Preparation for the consultation

Patients indicated that they valued completing the PROM prior to their consultation, as it prompted them to contemplate and assess their current disease burden and wellbeing. Patients considered this helpful in preparation for the consultation. About 50% of the patients were able to see the visualization of the results, i.e. the balloon chart, at home. This was of great value to them and assisted in preparing the consultation.

As preparation for the consultation, it makes me think about how things are going. What are questions I would like to ask the physician? So it, it adds structure and I appreciate that. — P10

HCPs appreciated it when patients saw the balloon chart prior to the consultation, as it improved the interaction and communication during the consultation.

HCPs send the ABCRC-tool digitally to patients through the electronic patient file. HCPs mentioned that the method for sending out the PROM might require some initial exploration, but once known, it works properly.

General experience consultation

Overall, patients expressed positive attitudes towards the use of the ABCRC-tool. The tool facilitated structured discussions and the introduction of all relevant topics, including those not routinely addressed previously. This was attributed to patient’s unfamiliarity with the possibility to discuss these topics, as well as potential discomfort experienced by both HCPs and patients in initiating discussions on sensitive subjects, such as intimacy issues or sexual functioning. Furthermore, patients felt more involved and heard, as they were actively asked to indicate which topics they wanted to discuss.

I think it was a pleasant conversation, and I am convinced that, because structure was provided with the help of the list and the balloons with the topics underneath, much more was simply brought up, both from the doctor and from myself. — P10

Some HCPs noticed that the duration of the consultations increased with the use of the ABCRC-tool. However, according to HCPs, this might decrease again when experience is gained. At the same time, they felt that the quality of the consultation improved, because more emphasis was placed on the patients’ needs.

I think that in the end, the ABCRC-tool will save us time because after a while, patients will have less requests for help, receive better care and are happier. (…) isn’t that what we should aim for? — HCP02 (AH)

Balloon chart

The visualization of the results of the PROM in a balloon chart (Fig. 1) was considered a valuable addition to the consultations by both patients and HCPs. It provides a clear overview of the patient’s disease burden, and the balloons and colours were overall considered clear and self-explanatory. The option to see their previous results in grey appealed to patients, as this allowed them to see progress or worsening of outcomes over time. However, the meaning of the grey balloons was not immediately clear for some patients. A few patients did not find the balloons of added value. One patient deemed them childish and one patient experienced a negative association with the colour grey. For HCPs, the balloon chart provided a complete overview of the patients health status, and due to the colours, they could immediately detect domains that needed attention.

It is a tool to measure the burden of disease, and it shows: look, back then it was like this and now it is like this. Then you can see the progress or regression. — P04

Treatment advice

Most patients looked at the treatment advices and appreciated the help and advice to actively work on specific domains instead of only seeing a poor outcome. For some patients, the value was limited or, if outcomes were good, not applicable. One patient preferred not to see the balloons and treatment advices before the consultation, but rather discussed the outcomes with their HCP first. For HCPs, it was convenient to have an overview of potential treatment advices that could be discussed, especially for the less clinical topics, such as work and finance and lifestyle. For patients with a higher burden of disease, it was important to be able to access the results and treatment advices after the consultation as well.

What I do think, is that if you have people who are really struggling, they can definitely benefit a lot from this. When you fill in those specific complaints, you can then see below, hey, you can approach these caregivers or institutions, or do this and that — P11

I did take a look at them, but right now I actually don’t feel the need for it because, I’m currently in a relatively positive flow. — P05

Use of the ABCRC-tool in the future

The majority of patients would like to use the ABCRC-tool again in future consultations and find the tool of added value. Yet, some patients saw no benefits for themselves, as they had no or very few symptoms and a low disease burden. This was especially true for patients who were > 1 year post-treatment. HCPs also saw most value in the first year after treatment, when the patient’s disease burden is highest. They all stated that they wanted to continue using the ABCRC-tool in their follow-up care. It was expected that the tool would most likely be used by nurse practitioners or physician assistants, who are increasingly covering the follow-up care of CRC patients in The Netherlands.

Well, I would like to work with it and especially in the first year of the follow-up, because I believe that is the period in which most patients face difficulties and ask themselves: is it normal what I experience and how am I supposed to deal with it? — HCP03 (AH)

Overall experience of the ABCRC-tool

Patients graded the overall experience of the ABCRC-tool with an average of 8.0 on a scale of 1–10. Patients mainly based their grade on the fact that a variety of relevant topics were now discussed. The fact that they can use the PROM to prepare the consultation, see their outcomes in a balloon chart, in combination with the ability to keep track of changes over time, was considered of added value. Room for improvement was mainly seen in the option to visualize the balloon chart and treatment advice at home which did not function properly for some patients. Furthermore, some patients in their second and third year of follow-up, who were doing well, did not see much added value of the tool.

I think the tool is very user friendly. I like the way it guides you into a consultation, and also to recognize a certain trend over the long term. — P03

The participating HCPs graded the overall experience of the ABCRC-tool with average grade of 8.3. The HCPs considered the tool to be an improvement for CRC care. Nevertheless, the HCPs identified certain implementation barriers, particularly related to the duration of the consultation and technical challenges. Resolving these issues is deemed essential for the efficient integration of the tool into clinical practice.

I liked it because it is well structured (…) you prevent that either I will forget to ask about things, or that the patient does not dare to ask about it. — HCP01 (NAH)

It is of added value. It looks good, it is intuitive, it is easy, not too many questions, doesn’t take too long. It is of added value, both for the patient as for the healthcare professional. — HCP02 (AH)

Audio recordings of follow-up consultations

Twenty-five consultations in which the ABCRC-tool was used were recorded. The mean duration of the consultations was 15 min (range 6 to 32 min). As this was the first time that these patients used the ABCRC-tool, a substantial part of the consultation involved explanation of the tool, which took some time. Table 3 provides an overview of the domains of the ABCRC-tool addressed during the consultations. It shows that nearly all domains of the ABCRC-tool were discussed in the majority of consultations. Domains such as “stoma” and “work and finance” are not applicable to all patients and were therefore less frequently discussed.

Table 3 Overview of the topics that were discussed during the recorded consultations

Furthermore, these consultations provided quick insight into the practical use of the tool at that time. It became evident that both patients and HCPs had their own way of using the tool. Sometimes, all domains were briefly discussed, while in other consultations, the patient and HCP decided to focus on one or a few domains specifically. If any issues or ambiguities were identified within the audio recordings, researchers could act upon them immediately and provide additional instructions for future consultations.