We included 15 patients, but one patient withdrew consent before the interview because he did not have the time to participate leaving 14 patients for data analysis. All interviews were performed from June 2021 to August 2021, and the interviews had a median duration of 30 minutes (range 18-49 minutes). The patients represented different symptoms, age groups and genders (Table 1). Results are reported according to major findings and noted as final categories identified during the analysis (Figure 1).
How the patients got in contact with the clinic
It was difficult for patients to differentiate between the various out-patient clinics they attended in the hospital care system. At our Department of Surgery all patients routinely attend follow up care primarily to check for recurrence. Some patients also had appointments at the oncology and general medical departments. The late complication clinic was an add-on offer to detect and treat late complications. All patients in the current interview study had attended the late complication clinic, however with diverse points of entry into the clinic and subsequently quite different perceptions of how they came into the clinic. Patients who were referred to the late complication clinic by the oncologist knew when and how they came into the clinic contrary to patients who were referred immediately after surgery. The latter were invited through ePROMs according to the current point of entry set up for the clinic. Interestingly, one participant was convinced that he or she had never been to the clinic. In general, the patients found it difficult to find information about the clinic on the hospital's website.
The patients experienced the staff as professional and with excellent communication skills, proficient dissemination of knowledge, good at asking questions, and they welcomed all questions - even the strangest ones as a participant formulated it. Patients were able to prioritize their problems while in the clinic. The patients described having different experiences with the one surgeon and two specialized nurses dedicated to manning the clinic. Some patients were very happy to talk with the surgeon during the first consultation while others experienced that the surgeon´s guidance did not work, and they were happier with guidance from the nurses.
Some perceived they were discharged from late complication clinic prematurely and felt rejected by the staff. They wanted a future appointment in the clinic instead of merely the possibility to contact the clinic by telephone if they experienced symptom relapse or new symptoms. Surprisingly, some patients expressed that they had not been informed that they could always call the clinic if needed.
Symptoms were reduced for most patients after they had attended the late complication clinic
Most patients felt benefit from attending the late complication clinic. They primarily received help with stool problems, which eased their everyday living. Common stool problems were diarrhea or fecal incontinence which were addressed by medical advice and general advice about food intake and toilet habits. The patients had two different observations regarding how they were informed about treatment options. Some experienced they were informed precisely about dosage of medications and provided with a detailed treatment guide. They also learned that there were alternative options if the first treatment did not work. Others felt they had to improvise and find the correct dosage of medicine through a trial and error process. Thus, they wished for more concrete advice.
Many patients were experienced in taking stool regulation medicine prior to their contact with the late complication clinic. Despite this, they described how they were first able to identify the appropriate dose after being guided and titrated by the staff in the clinic.
Patients who had no effect of treatment from the clinic expressed that although they were not relieved of their stool problems they were helped in other ways, which reduced challenges in their daily life. Some expressed that they had received dietary advice that although it did not help patients fully, it nevertheless contributed to some symptom relief. Patients anticipated that, hopefully, at some point the advice would help them, or a new effective treatment would emerge.
Some patients had the perception that the clinic only took care of bowel symptoms, and they therefore refrained from asking for help for other symptoms. However, other patients described they were helped with other symptoms as well, for example erectile dysfunction.
Experiences with the concept of a late complication clinic
The patients` experiences with the late complication clinic were diverse. Many patients were delighted with the clinic since the majority had managed on their own for a long period of time without knowing where they could get help before they were referred to the late complication clinic. Others had so many offers and appointments at the hospital that it was difficult for them to discern if they were in the late complication clinic or in the ordinary cancer control program. Regardless of this, they declared they were satisfied with either clinic they attended.
Generally, the patients expressed that they felt very secure knowing they had the late complication clinic as a backup. This sensation of feeling secure was expressed in different ways: they were not forgotten, and they appreciated that somebody would help them if needed. Moreover, patients were glad to be in any new projects and they were willing to do something extra if they could contribute to science. Additionally, they had a feeling of better information and getting better service with more consultations when they were in a project.
Recommendations for the future clinic
All patients expressed the need to be referred to a late complication clinic after treatment for colorectal and anal cancer. Either they wished to be connected immediately after initial treatment or 3-6 months after. If they were referred to the clinic right after treatment, they would expect counseling from the beginning about which complications and symptoms were most common. They would feel very secure due to the contact with the clinic. Notably, patients underlined the importance of getting help at the outset of treatment in order to avoid developing bad habits or inventing self-made strategies to treat late complications. Others argued that if they were seen before three months, they would not have late complications yet. Some thought there were already too many adjustments to deal with in the patient’s life right after treatment, and they would not be ready to attend a new clinic at that point.
All patients were asked if they would attend an information session with other patients about late complications if that was possible. Most patients would like contact with other patients, but the majority of the patients preferred small groups with 2-3 participants who had undergone the same kind of surgery, and who had similar late complications. Yet, others had a good experience with the patient education they had attended before surgery. This education normally entailed education of 10-15 patients about what to expect at the time of admission and surgery. The patients expressed they would like a similar set-up concerning late complications and treatment options. Among the patients who would opt to attend an information session, most said they would not actively partake in an open discussion or information session about taboo subjects such as stool problems.
Several patients recommended more information material to be available either as a brochure or on the hospital’s website. They wished for information about the most common late complications such as how long time the symptoms would persist, dietary advice, and treatment options that the patient could start up on their own. Patients also wanted us to share general advice from other patients even though they knew that such advice was not necessarily evidence based.
Some of the men pointed out that they would benefit from offers directed to the male gender. It was not specified what they exactly wanted, but they mentioned more concrete advice and information. They would prefer that more information was separated by gender and more men than women were willing to help other men through peer support in the future.
Preparation and delivery of the consultations
Consultations by telephone
Almost all consultations in the late complication clinic were conducted by telephone. Most patients appreciated this because it was practical when they lived far away from the hospital, it eliminated time for transport, and it was easier to fit into everyday life with a job and other activities. Some patients preferred face-to-face contact because they wanted to know the staff better and because it was easier to bring a relative to a face-to-face consultation. However, the patients who preferred physical contact also accepted telephone consultations. Some patients even announced that they favored telephone consultations over video consultations. In general, patients found it easy to express themselves over the telephone.
Experiences with ePROMS
All patients filled out ePROMs before they came to the clinic, and they had no problem in answering the questions. Almost all patients mentioned that there were many questions. For the vast majority, it was not a problem and they understood that we needed to ask many questions to cover the subject and to contribute to research. Patients experienced a positive reflection of their situation with symptoms of late complications while answering the questions. A few well educated patients were worried that the questions were too many and too difficult to answer for patients with lower educational levels. Some patients missed more purposeful questions about psychiatric reactions and lifestyles habits.