Paradoxes of follow-up – health professionals’ views on follow-up after surgical treatment in gynecological cancer

Abstract

Objective. Evidence now reveals that attending a follow-up program may not improve survival for low-stage gynecological cancer patients. The aim of this study was to explore health professionals’ experiences with the follow-up programs and their views on follow-up in the future.

Methods. A qualitative approach was undertaken with semi-structured focus group interviews. Three focus group interviews were conducted at neutral ground. One group with onco-gynecologists, one group with specialist nurses, and one mixed group. The main themes of the interviewguide were: Existing follow-up program, life after cancer and future follow-up. The interviews were transcribed verbatim. Patterns and themes were uncovered from the data inspired by interpretive description.

Results. The doctors described most advantages, such as: Quality control of their own work, detection of sequelae after surgery, and credit and appraisal from the patients. A disadvantage was the inadequate use of the nurses’ main competencies. Some dilemmas were described by the nurses as well as doctors: First, both groups were aware of the existing evidence that attendance of follow-up programs may not improve survival and yet, health professionals still performed the follow-ups and most often did not address this paradox for the patients. Second, the existing follow-up program seemed to bring the patients comfort and security on one hand, but on the other hand it seemed to induce insecurity and anxiety. The health professionals agreed that future follow-up should be individualized with focus on the single patients’ needs and psychological wellbeing. The health professionals identified a great challenge in communicating the evidence and the forthcoming changes in the follow-up programs to the patients.

Conclusions. This study revealed that the existing follow-up regime contains several dilemmas. According to the health professionals, future follow-up must be more individualized, and a shift in focus is needed from relapse to quality of life after cancer.

During the last decades patients are living longer with or after their cancer [1,2]. This naturally leads to an increase in the demands and workload in the existing follow-up programs after cancer. The main purpose of routine follow-up after cancer has long been known to be early detection of recurrence [3]. However, recently the existing follow-up paradigm after low-stage gynecological cancer has been questioned [4–6]. Evidence suggests that attending a standardized follow-up program does not improve survival [5–7]. Only one randomized trial has been conducted on gynecological cancer patients and showed no improvement in survival by follow-up with CA-125 in ovarian cancer patients [8]. However, only advanced stage ovarian cancer patients were included in this study. Our knowledge on the surgically treated patients is limited to retrospective studies. This led to an investigation of the existing follow-up regime in Denmark initiated by the Danish Health and Medicines Authority. The overall aim of this initiative was to make way for a paradigm change in cancer follow-up in Denmark, by suggesting a new model with focus on patients’ needs and quality of care, and which is more compatible with socioeconomic interests [9].

Although considerable research has been devoted to explore the patients’ experiences and needs regarding follow-up [10–12] rather less attention has been paid to explore health professionals’ views on follow-up after surgery in gynecological cancer [13–16].

Most studies on the health professionals’ experiences with the follow-up programs are quantitative studies. However, an open, qualitative approach would be particularly appropriate to explore/investigate health professionals’ experiences and views.

One qualitative study with one focus group interview with health professionals suggested a mismatch in the existing follow-up between patients’ knowledge and expectations and the growing evidence indicating that survival is not improved [16].

This paper presents a qualitative approach to explore the follow-up setting and the health professionals’ experiences in the existing follow-up regime in Denmark. The aims of this research project was to generate knowledge for the upcoming revision of the existing follow-up program for gynecological cancer patients in Denmark. By taking the health professionals’ points of view into consideration in this process, it may be possible to gain greater satisfaction not only for the patients, but for the health professionals and the healthcare system as well.

Material and methods

A qualitative approach was undertaken to explore health professionals’ views on and experiences with follow-up after surgery in gynecological cancer. Focus group interviews are suitable for explorative studies in a new field. This study consisted of three semi-structured focus-group interviews. The interview guide was developed based on our recent research (in submission). The three main themes of the interview guide were: The existing follow-up program, Life after cancer, and Future follow-up.

The existing follow-up program after surgical treatment for gynecological cancer in Denmark has remained largely unchanged since the 1980s. Typically, it is based on a program with frequently checks at the Onco-Gynecological Department during the first year, and then longer intervals between checks. The program typically ends after 3–5 years depending on the diagnosis and stage, and provided that no relapse has occurred. The follow-up visits typically include asking the patients about their wellbeing, and a physical, objective examination (which sometimes includes transvaginal ultrasound, depending on the primary diagnosis) and a new appointment.

Participants were recruited from the gynecologic departments at Aarhus University Hospital, Rigshospitalet Copenhagen and Hospitalsenheden Vest Herning. The first two are university affiliated cancer centers. From each gynecologic department, the head of department selected the participants. Participants were six doctors and six nurses specialized in onco-gynecology (Table I shows participant characteristics). The interviews took place at neutral ground. Participants were distributed in three groups: Doctors only, nurses only, and mixed (Table I). We chose to conduct one interview with doctors separately and one interview with nurses separately because we wanted to clarify potential different views in the two groups of professionals. We believed that more nuances from the two professions would be presented, when they were not put in a mixed group and asked to seek consensus. Our expectation was that the two groups would present different views due to different professions leading to different competencies, positions and tasks in the daily work. The purpose of the mixed group was to explore fields with immediate consensus and topics of discussion. All observations and interviews were conducted by the same researcher (first author), whose background is a medical degree. Analysis has been made in closely collaboration with an anthropologist and a senior researcher at Center for Public Health and Quality Improvement.

Table I. Participant characteristics.

Interview 1 Mixed group	Interview 2 Doctors	Interview 3 Nurses
Doctor, female, age 53, AUH, *9	Doctor, female, age 63, RH, *23	Nurse, female, age 42, RH, *9
Doctor, male, age 56, HEV, *20	Doctor, male, age 47, RH, *15	Nurse, female, age 42, RH, *3
Nurse, female, age 41, HEV, *9	Doctor, male, age 69, HEV, *30	Nurse, female, age 49, AUH, *12
Nurse, female, age 58, HEV, *9	Doctor, male, age 55, AUH, *25
Nurse, female, age 33, AUH, *5
Main themes in the interview guide:	• Existing follow-up program • Life after cancer • Future follow-up

AUH: Aarhus University Hospital; HEV: Hospitalsenheden Vest, Herning; RH: Rigshospitalet, Copenhagen; *: Years in Onco-gynecology.

Data analysis

All interviews were recorded digitally and transcribed verbatim. Data were coded using the software-program NVivo, version 9. Interpretive Description inspired the qualitative analysis to generate clinically relevant and useful data [17]. First, all data were read and re-read several times (i.e. naïve understanding). Second, a text-near reading was performed during which the text was sorted into themes and patterns to determine what was actually said about the phenomenon under inquiry. Third, interpretation and discussion of the patterns and themes found were performed, and the results were related to the actual context and the discourses of the topics [17–19].

Results

Advantages in the existing follow-up program

Some advantages seemed obvious throughout the interviews:

“It brings comfort to the patients, knowing that they belong somewhere and have planned appointments” (doctor)

It was the general opinion that the greatest advantages with the standardized follow-ups were comfort and security for the patients. Follow-up gives the opportunity for the doctors to do quality control on their own surgical work and thereby ensure continuous education and development. Furthermore, follow-up makes it possible to diagnose postoperative complications. Therefore, especially the first follow-up visit was described as essential, both by doctors and nurses. Especially the nurses pointed out, that the first follow-up was used for an informal screening of the patients’ psychological wellbeing:

“ It is really good the first couple of times the patients come here after their operation” (nurse)

“Especially the first visit is important, many patients are still in the phase where they do not dare to believe that they are cured, and they really need to talk to a doctor” (nurse)

The doctors described that they meet great gratitude and respect from the patients, which lead to a strong feeling of personal success and satisfaction:

“I would be sorry to lose the existing follow-up program; that is where I collect my vitamins” (doctor)

“For me, the most important factor of follow-up is quality control of my own work. It helps me getting better at what I do” (doctor)

“It is a meeting, where the patient gets confirmation that she is cured and I get confirmation that I am skilled. It is like a shared benefit” (doctor)

However, our data suggest that the nurses did not feel the same satisfaction, personal confirmation, and respect as described by the doctors.

The follow-ups after low-stage cancers (here defined as endometrial cancers stage I) were described both by doctors and nurses as potential time buffers. Hence, if the “easy” follow-ups were abolished, a lot of flexibility in the time schedules would be lost:

“I believe that the risk by cutting down on the light follow-ups, is that we lose the flexibility. That would make it impossible, and then it is worth nothing.” (doctor)

Dilemmas in the existing follow-up program

During data analysis the theme “life after cancer” revealed several dilemmas pointed out by the health professionals in regard to the existing follow-up program and the patients’ lives after cancer. It was suggested that the follow-up program may do a disservice to the patients in inducing fear and anxiety and maintenance as cancer patients instead of supporting the patients in returning to a good life after cancer, as intended.

The existing follow-up program was described as unsatisfying in several ways. First, both doctors and nurses stated that the nurses’ competencies in communication and psychosocial rehabilitation were almost unexploited:

“Now we (nurses) are just like an appendix or something” (nurse)

“You often just sit next to the doctor and listen. That is the way it is today” (nurse)

Second, in regard to the strict time-limit in the set-up the health professionals stated that they sometimes refrained to elaborate on patients’ hints because if it took longer than 2–5 minutes, they would get behind schedule:

“To be completely honest, I sometimes fear to push some buttons, because I simply do not have the time for that talk with the patient” (doctor)

Third, it was unsatisfying if the health professionals themselves were not able to help the patients, and were lacking opportunities for referring the patients for relevant treatment elsewhere.

Finally, the dilemma that patients and health professionals had different beliefs of the purpose of follow-up, due to different levels of knowledge, was described as the hardest dilemma to handle:

“They may expect that we can prevent something bad from happening, and we cannot do that” (nurse)

“They have an enormous faith in our follow-up system – I think they have too much faith” (nurse)

“I actually wonder why so few patients question the follow-up program” (doctor)

“We do not put in to words that the physical examination has a low sensitivity in regard to detect cancer recurrence” (doctor)

Although, comfort and security for the patients were described as the greatest advantages in the existing follow-up program, the health professionals identified the dilemma that follow-up also has negative side effects for the patients:

“As long as the follow-up lasts, we maintain the patients as cancer patients” (nurse)

“The stress induced by the follow-up may be greater than the stress if there were no follow-up” (doctor)

“It is also an intervention, making patients attend a follow-up program” (doctor)

“I think, sometimes you can have a bad taste in your mouth” (nurse)

According to the health professionals the greatest disadvantage for the patients was retainment as cancer patient throughout the follow-up program.

Health professionals’ views on future follow-up

The health professionals agreed that the first follow-up visit (about three months after surgery) was essential for several reasons:

First, to detect any postoperative complications and for the doctors to do quality control on their own work.

Second, to debrief with the patients about the process they had been through.

Third, to conduct some kind of screening on the patients’ psychological wellbeing. Therefore, the first follow-up visit ought to be maintained in the future. However, there was some disagreement concerning the psychological screening. Most nurses and some of the doctors agreed that they could do an informal screening in the existing follow-up set-up. Whereas some doctors disagreed because of the time-limit and lack of relevant screening-tools.

Both nurses and doctors argued that future follow-up holds greater assignments for the nurses than does the existing follow-up:

“Future follow-up should involve the nurses, a large part of this is within the nurses’ main competencies” (doctor)

Some of the nurses’ main competencies were described as comfort, communication, and help in rehabilitation. It was stated in all interviews that these competencies were often not fully exploited. Future follow-up, from the health professionals points of view, should be more individualized and not only carried out by doctors and not only in the hospital setting, but other relevant professions should be included automatically when relevant, e.g. general practitioners, sexologists, psychiatrists, incontinence specialists.

“In the future, follow-up must be targeted and individualized so we can stop performing pseudo follow-ups. We shall perform relevant follow-ups instead!” (doctor)

“The patients need to learn to cope with the fact that they had cancer once” (nurse)

The health professionals described an important task of communication with the patients regarding the purpose of follow-up and the structure of follow-up in the future:

“It is about what we induce from the beginning; if we were more open, I believe many patients would think differently about the follow-ups” (doctor)

“It requires that the patients understands that the symptoms are the most important factor” (doctor)

“I think, in the future we should consider carefully what we want from the follow-up visits. If it is a medically visit due to high risk or if it is something else. And we must define it to the patient.” (nurse)

Figure 1 summarizes the main findings of this study.

Figure 1. Health professionals’ views on advantages and dilemmas in the existing follow-up program on different levels. To the left, advantages on a personal level is listed as a time buffer in a tight schedule and as a source of personal success (mainly true for the doctors). Dilemmas are different levels of knowledge between patients and health professionals. Further, it is unsatisfying (especially true for the nurses), that the nurses’ main competencies are almost unexploited in the existing set-up. In the middle, advantages on the professional level (especially true for the doctors) are doing quality control on their own work and opportunity to detect post-surgery sequelae. Dilemmas are the lack of evidence for a survival benefit of follow-up and the missing possibilities for referral to, e.g. a sexologist when needed. To the right, the health professionals’ concerns about patients’ benefits/advantages and disservices/dilemmas in the existing follow-up program is shown.

Discussion

The existing follow-up program after surgical treatment for gynecological cancer in Denmark and in most European countries contains several dilemmas. Patients and health professionals have different levels of knowledge resulting in different expectations regarding the purpose of follow-up. The health professionals are aware of the evidence, but still act as they have done since the 1980s [20]. In this study, the health professionals present several constructive suggestions for future follow-up.

In Denmark there are five onco-gynecological centers of which two participated in the present study along with a hospital referring to one of the two centers. A possible limitation of this study was the number of participants. However, since the aims were to explore and illuminate different points of views in the existing follow-up programs and on future follow-up, and the findings were rather consistent in all three interviews – apart from the nuances mentioned above – we believe that the number of participants were suitable for this study.

It was consistent that the follow-ups after low-stage gynecological cancer (here defined as endometrial cancer stage I) were perceived as a kind of time-buffers. The need to use time-buffers underlines the need for a new organization of follow-up. The high time-pressure in the existing follow-up program, may lead to a decrease in quality of care in the follow-up system for the low-stage cancer patients. However, the low-stage cancer patients may have the same degree of psycho-social rehabilitation needs in spite of their good prognosis.

A qualitative study consisting of one focus group interview with seven oncologists [16], found that performing follow-ups puts the health professionals in a dilemma; while evidence strongly points towards no survival benefit, the follow-up programs after gynecological cancer still remains unchanged. Lydon et al. concludes that it is needed to modernize the current, resource-demanding follow-up programs. Even though the participants in our study were gynecologists, and their patients were treated by surgery alone and often had a better prognosis than the patients having medical oncological treatment, the views of the oncologists in the study by Lydon et al. were quite similar to the views of the gynecologists in our study.

The greatest advantages for patients attending a follow-up program were described as comfort and security; paradoxically, the healt professionals described that the greatest disadvantages by attendance were insecurity and anxiety. Interestingly, it was mainly the doctors who described advantages both on a personal level and on a professional level in the existing follow-up program. Whereas the nurses actually did not really describe any personal or professional advantages. We suggest that this may be due to fact that the follow-up programs were developed by doctors for doctors. The nurses’ roles were originally to operate as chaperones. Today, the nurses’ roles in the follow-up setting are still not clarified. To some degree, the nurses’ roles are still to operate as chaperones. Some of the nurses’ main competencies such as comfort and guidance in psychosocial rehabilitation are not being fully exploited. We suggest that the nurses’ roles in future follow-up should be more central.

Recently, the benefits of the gynecological examination in the follow-up programs have been questioned. If the physical examination stops being a regular part of the follow-up program, but only performed on indication, the nurses may step out of the role as chaperones and in to the role as anchorpersons for the patients. Our findings indicated that the nurses somehow tried to compensate for the poor set-up by talking with the patients in the hallway. This little informal talk may be really important for the patients and the process. In our opinion it should be acknowledged and formalized.

Several intervention studies have investigated different follow-up strategies, mostly for breast cancer patients, i.e. with the nurses as anchor-persons. Most studies showed a high degree of patient satisfaction and patients felt secure [21,22]. However, further investigation is needed to stratify the patients in regard to their rehabilitation needs. The distress thermometer has been suggested as a screening tool to identify vulnerable or distressed cancer patients with special needs [23,24].

It is paradoxical, that the doctors on one hand use the low-stage cancer follow-ups as time buffers to win some time if they are behind schedule, but on the other hand, refrain to elaborate on the patients’ hints due to lack of time. This underlines that today's set-up does not match the needs of neither the health professionals nor the patients.

Finally, there is the big dilemma, that the existing follow-up set-up only makes sense as long as the patients are not aware of the existing evidence, that attending a follow-up program may not improve survival. The health professionals are caught in limbo until the guidelines for follow-up are changed and the health professionals can start to inform and practice the same thing. For the patients to feel secure in this process, it is essential to ensure unified communication not only from the health professionals, but from the Danish Health and Medicines Authority, The National Board of Health, the Danish Cancer Society, and the different patient associations.

Conclusion

The existing follow-up program in Denmark is characterized by several dilemmas. For doctors, it is satisfying to see how well their patients are doing, and doctors can use follow-ups as a quality control of their own work. There remains, however, an unexploited potential in a full utilization of the nurses’ competencies.

The first follow-up has multiple purposes: quality control, screening for physical sequelae, and it is used for an informal screening of the patients’ psychological wellbeing. Therefore it was described as essential. However, the follow-up circumstances are sometimes unsatisfying because of the time limit and because of missing possibilities for referral (e.g. to a psychologist or a sexologist).

The health professionals agreed that future follow-up should be individualized with focus on the single patients’ needs and psychological wellbeing. Further research is needed in order to answer the question: how can this be achieved?

The health professionals articulated a great challenge in communicating the evidence and the forthcoming changes in the follow-up programs to the patients.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.