Exploring colorectal cancer survivors’ perspectives on improving care delivery and the role of e-health technology: a qualitative study (2024)

Study design

For this study, a phenomenological approach was used [25]. This research method involves examining a phenomenon from the perspective of those who have experienced it, to define its essence and significance [26]. To examine the experiences of Dutch CRC survivors with CRC care delivery, semi-structured online focus groups were conducted. Focus groups encourage participant interaction, promoting the emergence of diverse perspectives and social interactions [27], which leads to a deeper understanding of their experiences. A semi-structured format was used to allow for more flexible questioning and exploration of topics and to delve deeper into the responses provided by participants [28, 29]. The focus group protocol was crafted by the primary author (LvD), predominantly drawing from previous relevant research [21, 30]. Collaborative contributions from RvdV, JJA, and JS enriched the protocol through insightful feedback and suggestions shared during interdisciplinary team meetings. This iterative refinement process aimed to strengthen the depth and scope of the topic guide. An overview of the focus group protocol can be found in Supplementary file 1.

Data collection

To be enrolled in the study, participants had to meet all the following eligibility criteria:

1. Be a CRC survivors aged 18years or older diagnosed with cancer stages I–IV.

2. Currently receiving treatment or have undergone treatment within the past 5years.

3. Possess a good command of the Dutch language.

4. Have utilized at least one form of e-health throughout the CRC care pathway.

Convenient sampling was used to gather participants, with online invitations disseminated through various channels such as patient associations, research institutions like the Netherlands Comprehensive Cancer Organization, and the LinkedIn pages of the researchers and their organizations. Furthermore, the invitation was also posted in Dutch Facebook groups for cancer survivors.

The call to participate included a link to a registration form to collect the following information: demographic characteristics, cancer stage at diagnosis, treatment period, type of treatment, and hospital, and information on the types of e-health used throughout the CRC care pathway. Participants were also asked to provide two examples of instances where they saw room for improvement in CRC care delivery based on their personal experiences, which served as input for the focus group discussion.

After completing the form and when eligible for participation, applicants received an email with an information letter and a date planner to schedule the focus groups. To participate, individuals had to confirm via email that they had read the information letter and provided written consent.

Initially, 28 individuals signed up, all meeting the inclusion criteria, but nine dropped out before an interview could be scheduled. Therefore, three focus groups were planned with nineteen participants. Three individuals did not show up during the focus group meeting, resulting in sixteen participants.

The online focus groups were conducted in Dutch by two female researchers with a background in psychology and trained in focus group discussions (LvD, MSc and RvdV, PhD) until data saturation was reached (i.e., when new incoming data produced little or no further information to address the research question). The focus groups were video-recorded for analysis purposes.

Content of the focus groups

During the focus group, two main topics were discussed. The first one was about opportunities to enhance CRC care delivery throughout the CRC care pathway. The second topic was about using e-health to improve CRC care delivery. The term “CRC care pathway” refers to how Dutch medical specialist care for CRC survivors is typically organized. This pathway includes referral, diagnosis, treatment, aftercare, and sometimes, palliative care [17]. A detailed explanation of each phase in a standard CRC care pathway can be found in Supplementary file 2.

The first topic was introduced by summarizing participants’ answers to the open-ended question in the registration form. Also, the care pathway was shown to help participants consider their experiences throughout all stages of the care pathway. For the second topic, an overview slide was shown with a definition of e-health and an explanation of different e-health categories. These categories were based on a framework of Nictiz, a Dutch knowledge center for national ICT applications in healthcare [31], adapted to categories of technology and digital health services relevant to CRC survivors. The e-health categories used included digital communication, telemonitoring, online information services, personal health environment, self-monitoring, and patient portals. More information about these categories and their explanations can be found in Supplementary file 3.

To start the conversation on the first topic, two hypothetical short stories were presented as examples of how e-health could improve CRC care delivery. These stories, known as vignettes [32], provided practical examples of how e-health can enhance different phases of the care pathway. The vignettes were based on previous research on how healthcare professionals perceive the potential benefit of e-health throughout the CRC care pathway [21]. The stories described the use of different e-health technologies in different phases of the care pathway. The first vignette narrated a woman’s experience choosing between a digital intake, comprising online information and a digital questionnaire, or a regular face-to-face intake before undergoing an endoscopy. The second vignette described how a man’s recovery from surgery was monitored by his doctor through a smart patch and daily digital questionnaires. The complete version of the vignettes can be found in Supplementary File 4. Following the discussion of the vignettes, the researchers posed specific questions to encourage a more expansive conversation beyond the content of the vignettes to gain a broad insight into the participants’ experiences during their care process.

Data analysis

Data analyses were conducted in MAXQDA 2022 software [33]. The framework method was used for data analysis [34], a qualitative content analysis approach highly adaptable for studies that aim to generate themes. This method is suitable for semi-structured focus groups, and offers clear steps to follow, and produces highly structured outputs of summarized data, making it beneficial when multiple researchers are involved in a project [34]. Each step of the framework method was followed throughout the analysis, which is detailed below.

Firstly, the focus groups were transcribed word-for-word, and the researchers familiarized themselves with the data. Next, two researchers, LvD and EA, independently coded the initial focus group data using deductive coding based on the protocol’s topics and inductive coding based on emerging topics from the data. These codes were compared until the researchers agreed on a working analytical framework (i.e., developing a thematic framework), which was used to analyze the remaining data (i.e., indexing). Any discrepancies were discussed until a consensus was reached. Finally, the researchers created a framework matrix to summarize the data from each focus group per category (i.e., charting) and interpreted the data (i.e., mapping and interpretation). Data saturation was achieved regarding the identified themes. The relevant quotes were translated into English and presented in the following format: survivor number, gender, age in years, and cancer stage number.

Rigor and quality assurance

To ensure the accuracy and quality of the research findings, we utilized the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [35]. A completed version of the checklist can be found in Supplementary file 5. Furthermore, the coding scheme can be found in Supplementary file 6.

Participants’ demographics

Table ​Table11 provides an outline of the demographic details of the focus group members, totaling sixteen participants. There were two focus groups with five participants, and one with six participants. The average age of the participants was 55years (SD = 9, range 39–70).

Participants’ views on opportunities to improve CRC care delivery

This section outlines five opportunities to enhance CRC care delivery based on participants’ personal experiences. At least two participants have mentioned these opportunities.

• 1. Need for better recognition of complaints and faster referrals

Some participants had negative experiences with the recognition of complaints and the general practitioner’s speed of referral to the hospital for initial diagnosis of CRC. Among multiple participants, the complaints were initially not recognized as CRC symptoms. In some cases, this was likely due to their age, as two participants explained that they were much younger than average CRC survivors.

“Due to my age, it wasn’t noticed very quickly. I was told that I was too young, that it’s an old man’s trouble.” (Survivor 1, female, 52, stage 2).

Another participant mentioned that her general practitioner believed that hemorrhoids were the cause of her complaints.

• 2. Need for more information as part of the care delivery

Several participants reported that the medical-related information provided throughout different stages of the care pathway was not satisfactory or incomplete. One participant even received contradictory information during diagnosis. Others expressed a desire for more information regarding treatment options, side effects, recovery, medication, nutrition, physical fitness, coping mechanisms, mental health, reintegration, and palliative care.

“At the time of diagnosis, we received very contradictory information, about which we later complained. Clear and transparent communication is very important.” (Survivor 2, male, 43, stage 2).

Some respondents reported that the amount of personalized and in-depth information they received was directly related to how assertive they were in seeking it out. Certain participants only received customized information when they specifically requested it. Moreover, some participants felt reluctant to contact healthcare professionals with any questions they had during and after treatment.

Furthermore, participants reported needing clarification about which health professional to approach for specific concerns. They also missed having a designated point of contact for their questions.

• 3. Need for more guidance and monitoring of health outcomes

During their chemotherapy treatment, many participants felt unsure of how to monitor their health and experienced unfamiliar physical issues and changing side effects. They expressed a desire for more comprehensive guidance and support on these matters. Additionally, some participants felt that they were not being closely monitored after being discharged from the hospital after treatment to recover at home and wished for better monitoring of their physical and mental health during this phase. For instance, one participant mentioned that the hospital frequently called her during treatment to check in, but the calls stopped after the treatment. She would have appreciated continued monitoring during aftercare.

“The aftercare following the surgical removal procedure is subpar. There seems to be a lack of guidance and support, without any inquiry into my needs. For instance, I have not received any psychological counseling or follow-up monitoring after being discharged from the hospital” (Survivor 2, male, 43, stage 2).

• 4. Need for more intra- and interdisciplinary collaboration

According to some participants, practitioners could have collaborated more effectively within and across disciplines. They reported that practitioners did not always consult with each other to solve unexpected problems and indicated a lack of alignment between hospitals or other healthcare organizations. Furthermore, they said that various practitioners within the hospital did not seem aware of each other’s activities. This resulted in an inadequate transfer of information and survivors feeling overlooked. A suboptimal digital infrastructure partly caused this. For example, a participant mentioned she was treated in multiple hospitals, but practitioners could not access each other’s records.

“There are an awful lot of healthcare providers, and sometimes I feel like they all operate in their own little box. I know there is always interdisciplinary collaboration, but I do sometimes get the impression that things get a bit disjointed and I’m not sure who to turn to.” (Survivor 1, female, 52, stage 2).

• 5. Need for attention for partners and relatives

Finally, some participants said they wished their family and relatives had received more attention. They believed their significant others should have had the opportunity to share their experiences and receive help and support from peers or professionals on coping with problems they encountered.

“There should be more attention for the loved ones; being sick is not something you do alone, but it also has much impact on your family.” (Survivor 3, male, 63, stage 3).

Participants’ use and perception of e-health

Throughout the CRC care pathway, participants used various e-health categories. The most commonly used were online information services (88%) and patient portals (62%). Telemonitoring, on the other hand, was only used by one (6%) participant. Table ​Table22 contains additional information on the use of different technologies by the participants.

Participants’ views on how e-health could be used to improve CRC care delivery

In this section, participants’ views on how e-health can enhance CRC care delivery are described. Most ideas directly build on participants’ general suggestions to improve CRC care delivery, as described above.

• 1. The use of digital tools could help provide more comprehensive information

Participants indicated they would have liked to receive more information throughout the care pathway. They responded positively to replacing a face-to-face intake for an endoscopy with a digital intake, which includes online questionnaires and digital information about the endoscopy in the patient portal (presented in Vignette 1). This would allow them to access information at their convenience and review it again if needed. Additionally, the information can be provided in various forms, such as animations or written communication. It would also save time and eliminate the need to travel to the hospital.

“Naturally, I received flyers about what a colonoscopy looks like, what a certain operation looks like, and then you read that. However, I prefer visual information. For me, an animation or something would be more informative. I would have appreciated seeing a link or video on my portal about appropriate treatments and operations.” (Survivor 4, female, 47, stage 3).

However, participants expressed the need for flexibility in the intake process, as not all survivors are able or willing to use digital options. Technical support should also be easily accessible to survivors, and they should be able to provide any specific information they deem relevant to healthcare workers.

Participants report that digital information could be used to better support their inquiries during treatment and aftercare. Specifically, they would appreciate having access to information about treatment options, potential side effects, residual clinical damage, the recovery process, nutritional guidance, physical fitness, coping with the disease, mental health(care), and palliative care. This information could be offered through a reliable source such as the patient portal. Some participants were aware that relevant information was already available in the patient portal of their hospital, but not all participants were informed about this.

“Make sure there is a platform where people can find the information. What are your options? What kind of support is provided, such as oncological physiotherapy? Diet? Dealing with pain? You name it.” (Survivor 5, female, 65, stage 3).

• 2. Increasing digital communication with healthcare providers could help provide more comprehensive information

Participants expressed that they would have found it helpful to be able to communicate with their healthcare providers directly through digital channels. They suggested that this option should be made more easily accessible to lower the threshold for asking questions, as many participants felt hesitant to disturb their providers due to their high workload. To address this concern, participants suggested introducing a digital consultation hour, where survivors can save their inquiries until a specified time to communicate with their providers. Another suggestion was to have case managers refer survivors to the appropriate practitioner for digital communication, which would help clarify the responsibilities of each healthcare provider.

“Usually, when you have a question or something bothering you, you try to approach someone. But if I knew that every day between two and three, you could ask questions digitally or have a chat function and then maybe even say, ‘Let’s have a phone call,’ that would be really nice. Especially for questions that can wait a few hours.” (Survivor 1, female, 52, stage 2).

• 3. Telemonitoring could provide more guidance and monitoring

Participants expressed their desire to have guidance and be monitored during their recovery at home post-hospitalization. Telemonitoring after surgery, as presented in Vignette 2, was seen as a beneficial option to fulfill this need. Participants believed telemonitoring would provide a reassuring check-in during the first weeks of recovery at home after surgery. This would offer a sense of security, particularly since multiple participants were unsure about their ability to self-monitor during this phase.

“But you don’t know what hit you. You are terribly ill, and you’re so upset that you can’t monitor yourself. If you, for example, develop a fever, you must contact the hospital immediately. That is one of the things you have to monitor yourself, but are you aware of that? I’m not.” (Survivor 1, female, 52, stage 2).

Participants also expressed a desire to remain in the hospital for a certain period after surgery to receive care and advice and ask questions. Although they were open to the idea of leaving the hospital early and recovering at home, some participants were concerned that an early release combined with telemonitoring would be a cost-cutting measure instead of a survivor-focused improvement.

One participant suggested sharing telemonitoring data between the physiotherapist and the hospital for better recovery support. Furthermore, participants thought it would be valuable to access the telemonitoring data themselves. They believed that having insight into their health data could provide reassurance or confirm suspicions of abnormalities, making it easier to contact the doctor. Furthermore, participants presumed that it would facilitate self-management and motivate survivors to work on their recovery by viewing data, such as physical activity data. However, it was noted that adequate digital skills are needed for survivors to use and benefit from telemonitoring tools.

Another suggestion for monitoring after treatment was to use an app that allows survivors to enter specific symptoms and subsequently receive automatically generated feedback on whether these are usual or unusual side effects.

• 4. Enhanced sharing of electronic data could facilitate greater collaboration among professionals

Participants expressed a desire for their practitioners to collaborate more within and across disciplines but noted that the current digital infrastructure posed challenges. They suggested that healthcare practitioners should be able to read summaries of consultations and reports of examinations and treatments. In other words, to facilitate practitioners’ collaboration, they should be able to access each other’s records of survivors with whom they have a treatment relationship.

“I was treated in two separate hospitals. So, I have a digital record in both hospitals. The doctors cannot access each other’s records, so I have additional scans in hospital A, for example, since they were first made in hospital B. And there is no communication between those two hospitals. And I find that very difficult because then you are with the nurse, and you say, yes, but that is in that record. Yeah, she can’t access it. So, then I have to open the record of hospital A myself to show it to the nurse in hospital B.” (Survivor 5, female, 65, stage 3).

• 5. Digital platforms could support peer-to-peer contact

Several participants shared their experiences with peer-to-peer communication, both online and offline. Some had attended physical meetings organized by patient organizations and found them beneficial. Others found it helpful to actively participated in closed support groups on social media initiated by, for example, patient organizations. Some participants suggested that healthcare providers should refer patients to these digital groups. Another group of participants found blogs and responses valuable sources of practical advice and a way to feel recognized and acknowledged. However, some participants expressed concerns about privacy and safety on social media and blogs and suggested that healthcare providers should facilitate peer-to-peer communication within the healthcare sector.

“I think that contact with peers should also be facilitated. That is very important. I would never choose a social media platform construction because of safety, privacy, you name it. Even when that is a closed support group, all your information will still go public.” (Survivor 3, male, 63, stage 3).

Several participants suggested that facilitating peer-to-peer contact could provide additional support to family members and relatives in response to the expressed need for more attention to be given to them. They proposed a forum where partners and relatives could exchange experiences, ask questions, discuss problems, and provide advice to one another.

Below is the link to the electronic supplementary material.

Competing interests

The authors declare no competing interests.

Ethics approval

The clinical expertise center of the Dutch National Institute for Public Health and the Environment performed an ethical review of the study protocol. It has labeled the research as not subject to the Medical Research Involving Human Subjects Act (VPZ-578).

Consent to participate

All participants have provided written consent to participate.

Consent for publication

Not applicable.

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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