Lessons learned from the experiences of patients with chronic pelvic pain syndrome (CPP syndrome) with a multidisciplinary consultation: a qualitative study

Abstract

Introduction

Chronic pelvic pain syndrome is a complex multifactorial condition with an increasing prevalence probably due to a rising awareness. Chronic pelvic pain syndrome is pain in the pelvic area and often accompanied with complaints in other organ systems of the lesser pelvis. Patients with chronic pelvic pain syndrome who present at our center are evaluated in a standardized care pathway with an integrated multidisciplinary consultation. The team works in a single center and consists of gynecologists, pain specialists, urologists, a pelvic floor physiotherapist and a psychologist. The aim of this interview study is to evaluate the value of the multidisciplinary consultation from the patient’s perspectives.

Methods

In a qualitative study, we evaluated the experiences and perspectives of patients with chronic pelvic pain syndrome concerning the multidisciplinary consultation at the Radboud University Medical Center. Semistructured interviews were conducted with patients with chronic pelvic pain syndrome who attended a multidisciplinary consultation between 2019 and 2022. All interviews were transcribed verbatim, coded and analyzed via ATLAS.ti with the conventional content analysis.

Results

Data saturation was reached after seven interviews, followed by three confirmative interviews. In total, 10 patients (22–76 years) participated in the study. Three relevant themes were identified in the interviews: the deleterious effects of pain on overall health, the importance of the design of the multidisciplinary consultation, and the performance of healthcare professionals (knowledge, skills and interaction with patients and colleagues). Participants suggested that although the consultation did not improve their pain experience, there was value in having a comprehensive assessment of their disease. Patients preferred the consultation to occur at the beginning of the care. Additionally, they acknowledged the performance of healthcare providers and having their complaints recognized. However, some participants suggested the need for additional attention to mental health issues during the multidisciplinary consultation.

Discussion

Even though patients did not perceive the multidisciplinary consultation to improve their pain experience, they appreciated the sense of recognition by this team.

Conclusion

A multidisciplinary consultation is of value from the patients’ perspective. A suggestion for improvement emerged where the multidisciplinary consultation should occur at the beginning of the patient journey.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Chronic pelvic pain often requires a multidisciplinary consultation given its complexity and multiple etiologies. However, little information exits regarding perceived value from the patients’ perspective.

WHAT THIS STUDY ADDS

• Despite the limited individual benefit in terms of improving the pain experience, patients noted the value of the multidisciplinary consultation on a sense of perception that their concerns were being taken seriously.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study could be helpful in better informing guidelines and care pathways.

Introduction

Chronic pelvic pain syndrome (CPP syndrome) is a complex condition that often remains underdiagnosed.¹,⁴ It is described as ‘persistent pain in the pelvis lasting for at least 3 months’, occurs in both men and women and has a reported prevalence of 3.8%–43.4%.¹,⁸ This multifactorial condition can consist of complaints related to all organ systems situated in the pelvic region and/or complaints in the psychosocial dimension often in the absence of obvious pathology.^{14 6 8},¹⁰ Furthermore, CPP syndrome is associated with negative cognitive, behavioral, sexual and emotional consequences.^{4 6}

Current guidelines and literature recommend a variety of diagnostic and treatment options for this multifactorial condition.^{1 11} When diagnosing CPP syndrome, a detailed investigation is necessary, which includes a general, psychosocial and sexual history, and a physical examination focused on the pelvic region.^{1 11} Moreover, for the treatment of CPP syndrome, a combination of different therapies is endorsed, especially a multidimensional and interdisciplinary treatment program that has proven to enhance a positive outcome of chronic pain.^{49 10 12},²³ Such a program can consist of the following treatment options: pharmacological treatment, nerve blocks, surgery, pelvic floor physiotherapy and cognitive behavioral therapy.²,49 10 21 24 An integrated approach with the before mentioned therapeutic options can result in an effective pain reduction and an improved quality of life resulting in active participation in social activities.¹⁶,^{1820 23} Thomas et al confirmed the importance of an integrated approach according to the results of the evaluation of a CPP syndrome center in an academic medical center in the USA.²⁵ Additionally, a multidisciplinary approach might decrease the socioeconomic burden of CPP syndrome, as CPP syndrome patients often have multiple consultations with different specialists in their urge to seek a diagnosis and a fitting treatment. This delay in the patient journey might be prevented with a partly interdisciplinary approach and partly multidisciplinary approach.²⁶,²⁹ In summary, while multidisciplinary approaches involve parallel work across disciplines, interdisciplinary approaches emphasize collaboration and integration across disciplinary boundaries to address complex problems or questions.³⁰

Based on existing literature, guidelines formulate recommendations on appropriate treatment strategies. The International Continence Society, the European Association of Urology and the Dutch CPP guidelines advocate a multidisciplinary approach in order to improve the prognosis. The guidelines, however, do not provide details on the why and how of this approach.^{1 8 11}

Based on the current guidelines, in 2015, the Radboud University Medical Center (Radboudumc) started an expertise center in the diagnosis and treatment of CPP syndrome. Patients are diagnosed during a multidisciplinary consultation (MDC) by a multidisciplinary team consisting of urologists, pain specialists, gynecologists, specialized pain nurses, pelvic floor physiotherapists and psychologists. This team provides patient-centered care. During the MDC, the patients have a 2.5-hour consultation in which each member of the multidisciplinary team participates. The aim of the MDC is to collect all relevant information about the patient, discuss these findings of the team, determine a multidimensional diagnosis and create a personalized treatment plan. An interdisciplinary approach is used during the MDC, to create a holistic understanding of a complex issue that cannot be adequately addressed by any single discipline alone.

In 2022, a standardized dedicated CPP care pathway was formulated around this MDC. A scientific evaluation was started to assess the value of the MDC. In the present study, we explore the perspectives of CPP syndrome patients concerning the MDC. Due to the explorative nature of our aim, qualitative research methods are appropriate for this study. Qualitative research is a method used to gain an understanding of underlying reasons, motivations, and opinions. It is concerned with exploring ideas, behaviors, and experiences in depth, rather than gathering numerical data. Researchers use techniques such as interviews, observations, and analysis of texts or visuals to gather rich, descriptive information. The aim is often to uncover complex insights that quantitative methods might miss, providing a deeper understanding of social phenomena or human experiences.³¹ In this study, we seek CPP patients’ perspectives. These insights in the patients’ experiences and opinions of the MDC can be implemented in the care pathway for CPP.

Methods

Study design and participant selection

Semistructured individual interviews were conducted among patients who had attended the Radboudumc MDC for CPP. The interviews were held between August and December 2022. Participant selection was based on the following criteria: female (aged 18 years or older), attendee in the MDC between 2019 and 2022 and a competent Dutch speaker. A purposive sample was determined among patients listed in a CPP patient database at the Radboudumc. The selection aimed at reaching a variation of pelvic pain complaints and having women at different stages in the care pathway. The inclusions continued until data saturation was reached and three confirmative interviews were conducted.

The care pathway for patients with CPP

A care pathway is a description for patient-care management that uniforms/standardizes the care process of patients with a specific condition during a certain time period. Care pathways are based on evidence-based guidelines, best practices and, ideally, on patients’ experiences. The aim is to improve clinical outcome, quality of care, patients’ quality of life and satisfaction, and logistics of care.³²,³⁴

A schematic overview of the patient journey of CPP patients is presented in figure 1. Patients with CPP syndrome who are referred to our academic hospital are mostly referred by a general practitioner (GP) or a medical specialist at a referring hospital. The referral may be to one of three medical specialists: a gynecologist, a pain specialist or a urologist. If needed, this medical specialist refers the patient to one of the other specialties. This internal referral to another medical specialist often causes a delay in the patient’s diagnostics and treatment trajectory (ie, patient journey). In the patient journey at our hospital, there are two possible multidisciplinary moments in no particular order. The first, is a meeting where all involved departments are present (gynecology, urology, pain specialty, psychology and pelvic floor physiotherapy) and the patient journey is discussed without the patient. A second contact moment, called the MDC, the patient is an attendee. Patients who have complex CPP are eligible for an MDC. The optimal moment in the patient journey for an MDC depends on the following criteria: initial consultations with a gynecologist, a urologist, and a pain specialist have been executed and all indicated diagnostic procedures have been performed. Based on these criteria, the involving specialists decide whether a patient is eligible for the MDC and at what time point an MDC should be placed in the patient journey. Due to the availability of healthcare providers and the rising number of referrals concerning CPP syndrome, there is a waiting time for the MDC. This waiting time can be up to 1 year for the CPP syndrome MDC. In the current MDC, the patient receives a letter with information regarding the MDC, including the program of the consultation and which healthcare providers will attend the MDC. During the MDC, the patient has sessions with the specialized pain nurse (30 min), psychologist (30 min), pelvic floor physiotherapist (30 min) and attends in a concluding conversation together with the involving specialists (gynecologist, urologist, pain specialist). All healthcare providers involved in the MDC have several moments of deliberation on the findings between these sessions without the patient being present. In the concluding conversation, the diagnosis and treatment plan are deliberated with and explained to the patient.

Figure 1. The patient journey. Schematic description of the patient journey for chronic pelvic pain patients in the Radboudumc. The patient journey differs per patient and, for the sake of clarity of this figure, a lower than average number of contact moments is displayed.

Data collection

All interviews were conducted by two members of the research group, a PhD student (MCW), trained in conducting and analyzing qualitative interviews and a medical student (LvdN) with no previous experience in qualitative research. The researchers and the interviewees did not know each other prior to the interviews, but the researcher was aware of the patient file. This awareness was necessary for the patient selection and helped the researcher/interviewer during the interviews with understanding their patient journey.

A topic guide was developed based on a literature search and was used in the interviews to elicit experiences with and perceptions of the CPP MDC (online supplemental appendix I).^{35 36} The topic guide was evaluated and altered based on previous interviews, and this was per protocol done until the seventh interview only.³⁶ The topic guide consisted of two parts. The first section was based on the Machteld Huber method as explained below and the second section concerned the MDC. The first section included questions based on the six dimensions of health according to the Machteld Huber model: bodily functions, mental well-being, meaningfulness, quality of life, participation, and daily functioning.³⁷,³⁹ These questions delineated how pain affects a patient’s life within the context of the six dimensions of health. The second part focused on the experiences of participants with the MDC and ideally led to a proposal of the participant to optimize CPP syndrome care. Specific perspectives were presented to the patients at the end of the interviews, and opinions were collected. These perspectives had been derived from a focus group session on the entire care pathway (publication will follow) with 14 participating healthcare providers of the Radboudumc, and they discussed that an earlier MDC could be beneficial.

The interviews were held preferably face to face but could also be conducted online via Microsoft Teams. Oral consent to audio-taping the interviews was obtained and the verbatim transcribed interviews were sent to the participants for approval. All data were stored and analyzed anonymously. Recruitment of participants was continued until data saturation was reached, after which three confirmative interviews were conducted.

Data analysis

All transcripts were read and reread by two researchers (MCW and LvdN) before qualitative analysis was performed. Data analysis started after the first interview using conventional thematic content analysis.⁴⁰ Two researchers (MCW and LdvN) independently conducted open coding. The codes were compared and discussed until a consensus was reached. The codes were clustered, and categories were defined and combined in themes. In case of doubt or disagreement, a senior researcher (YE, SvdW or KJBN) was consulted. The final categories and themes were discussed and determined in the research group (all coauthors). Details of the authors’ contributions are presented in table 1.

Table 1. The steps of data analysis with the contribution of each author.

Data analysis		Authors involved
Step 1	Familiarization with the interview data by reading and re-reading interview transcripts	MCW	LvdN
Step 2	Open coding conforms conventional thematic content analysis	MCW	LvdN
Step 3	Discussing obtained codes	MCW	LvdN	KJBN	SvdW	YE
Step 4	Clustering codes into categories	MCW	LvdN	KJBN	SvdW	YE	KBK	KCPV
Step 5	Clustering categories into themes	MCW	LvdN	KJBN	SvdW	YE	KBK	KCPV
Step 6	Reporting the findings	MCW

The qualitative analysis was performed using the software ATLAS.ti V.22.0.11.

Results

Characteristics of participants

15 patients who met the eligibility criteria were approached for interviews based on saturation. 10 of these patients agreed to participate and characteristics are presented in table 2. Five interviews were conducted face to face at the Radboudumc; the remaining five were conducted online via Microsoft Teams. The mean duration of an interview was 41 min (range 23–66 min). The participants’ ages ranged from 22 to 76 years (median 40). During one interview, the partner of the participant was present; no other persons attended the interviews besides the researchers. The order of the questions was altered in the second part of the topic guide based on the natural course of the interview; after the seventh interview, the topic guide was consistent. The participants had no requests for corrections after reading verbatim transcribed interviews.

Table 2. Characteristics of participants.

Participant	Age	Years of pain	Location of pain	Year of MDC	Received treatment prior to MDC
1	24	2	Vaginal pain	2022	Medication Pain intervention Pelvic floor physiotherapy Psychological treatment Haptonomy
2	69	14	Anal pain	2020	Medication Pain intervention Pelvic floor physiotherapy Psychological treatment Dietician
3	76	18	Anal and vaginal pain radiating to lower back	2020	Medication Pain intervention Pelvic floor physiotherapy Psychological treatment Orthopedist Rehabilitation program
4	38	3	Pain situated near the coccyx	2022	Medication Pelvic floor physiotherapy Psychological treatment Neurologist
5	35	5	Vaginal pain	2020	Medication Pelvic floor physiotherapy Psychological treatment Sexologist
6	22	4	Pain left inguinal region, lower back and left upper leg	2020	Medication Pelvic floor physiotherapy Psychological treatment Surgery
7	32	4	Vaginal pain	2020	Medication Pain intervention Pelvic floor physiotherapy Psychological treatment Surgery
8	53	5	Pain in the lower abdomen, lower back and left inguinal region/leg	2021	Pain intervention Pelvic floor physiotherapy Psychosomatic physiotherapy Psychological treatment Surgery Osteopathy
9	42	4	Pain in the lower abdomen, vagina, anus, lower back and both legs	2021	Medication Pain intervention Physiotherapy, incl. pelvic floor physiotherapy Psychological treatment Rheumatologist, neurologist
10	69	3	Anal and vaginal pain	2022	Medication Pain intervention Pelvic floor physiotherapy Psychological treatment Surgery

MDC, multidisciplinary consultation.

Themes and categories

Data saturation was reached in the seventh interview. In the following three interviews, no new codes were generated. The codebook consisted of 103 codes, which were clustered into 11 categories and 3 overarching themes: the deleterious effects of pain on the overall health, the importance of the design of the MDC, and the performance of healthcare professionals (knowledge, skills and interaction with patients and colleagues). These three themes and matching categories are presented in table 3. The complete code tree can be found in online supplemental appendix II. The themes and matching codes are elaborated in the next paragraphs.

Table 3. Themes, categories and quotes.

Theme	Category	Quote
The deleterious effects of pain on overall health	Changes in dimensions by the MDC	Interviewer: Has the multidisciplinary consultation been able to contribute to physical functioning? Interviewee: Yes, the outcome has not changed the symptoms, but the attempts that have been done, they did try really, really hard to pull as much as possible out of the magician’s hat, and I think the MDC certainly did make a good contribution to that. Respondent 7
	Dimensions of health	I have undergone a hysterectomy. And well, that took a very long time before I could finally, yes, that I could function a bit again. But I couldn't function again, because I was getting nerve symptoms, I was really in pain. I couldn't walk for two-and-a-half years, couldn't sit; I could only lie down. I did try to walk twice a day after all to still keep moving physically. But yes, psychologically I did actually suffer rather a lot. Because I don't really have any quality of life and especially if you also have children as well, then everything does get very stressed. Respondent 9
Importance of design of the MDC	Information concerning the MDC	Well, it starts with the fact that you simply know clearly, well, what’s in store for you, so that you can prepare for it. I think… that you will then also get some information about everyone’s specific expertise in the field of the pelvic floor speciality. Respondent 3
	Expectations	Interviewer: And you had expected more examinations to be done during the consultation itself, or following on from the consultation? Interviewee: Yes, or that, but the equipment turned out not to be there, but I didn't know that… The pelvic floor specialist was also there, and she was going to examine the pelvis to see, what is that, is it painful? … I also kind of let it come to me, I thought: What can I expect from this? What else can they still do? So actually, yes, in that spirit, I thought I'll just go into it openly. And yes, you certainly have some minor things on your mind, but not really that I think of… I actually had that expectation, and it didn't happen for example, or did happen. No, that’s not the case. Respondent 9
	Setting of the MDC	Interviewer: And suppose we have the ideal situation, what would it look like for you, a consultation like this? Interviewee: That it’s a little bit earlier in the process, because now it was actually, not that useful for me, because before that I had been working with all the separate loose ends. So I think that if it can be brought forward a bit in the process, that would be helpful…. … maybe not immediately when coming in, but for example when you have had an intake and then, within the first month that you are in the hospital, you are seen quite directly by everyone, so that the plan is also made together right away and not all separate things are laid out. Respondent 5
	Mental versus physical aspects	Interviewee: I think, how can you possibly assess someone in half an hour at most on how you are psychologically, or something like that… …I don't know, I thought that was all done very quickly, yes. Interviewer: And, how would you rather have had it? How much time with the psychologist would you have found more useful? Interviewee: Well, I would have had an hour or so if necessary, but at least a bit more from the beginning, so that you get to tell your story. Respondent 8
	Shared decision-making	Interviewer: And how did you feel about the space you were given to, to have something to say in that consultation? Interviewee: Very good, yes, because they all came together at one point, and they really, really spent a lot of time on that, and my partner could ask questions, I could ask questions, they took me through the conclusion thoroughly. Whether I was okay with all that they wanted to do. … I could also specify exactly what I wanted in it myself. Respondent 4
	Formation of the MDC	Um, I thought it was fine I think. Of course, you can't have every doctor sitting around you after all. Maybe sometimes look a little wider at what we haven't looked into yet, so for example a neurologist. I don't know how that works either, whether you can just pick a team like this yourself. Respondent 6 Interviewer: Yes, if we look at how the team is made up where I have just named all the people you saw. What do you think about that? Interviewee: I think that that’s fine. Respondent 2
	Proposal for the future MDC	… it just seems fine to me if you can have a benchmark point like that… Yes, you know, then I think it’s also a bit more plannable for all of you… …If you have it all planned at a certain point, that’s good for the patient, because they don't have to travel up and down 80 times to the hospital, and you also just have a moment or a day where you tick, tick, tick off all the patients. Respondent 7
Performance of healthcare professionals (knowledge, skills and interaction with patients and colleagues)	Communication of healthcare professionals	And in the beginning, sending the letters was forgotten. Especially, oh, in the beginning with the pelvic floor therapist. They were supposed to contact doctor xxx. So then I started to get a bit irritated, that at some point after a few weeks, I called the hospital, and they said: but you are not in the system at all. I said yes, but a letter was supposed to be sent. They said: “Yes, but we didn't have it. Do you want to do that yourself then?” I said, yes, but it is the intention after all that the pelvic floor therapist does that. Well and then the ball started rolling, so even at the beginning I had to wait quite a long time. Respondent 10 The pelvic floor therapist in the hospital told me: “I'll send my findings to your own pelvic floor therapist or I'll contact the therapist in Hengelo and you'll certainly get a call from her…” …Well, then you wait, and you wait, and you wait, but again no call comes. And then I happened to have doctor xxx on the phone after that second treatment to see how things were going, and then I said, yes, I'm still waiting for the pelvic floor physiotherapy. Yes, he said, but you can phone them yourself. I said: but I was not told that or given the name of the person to call then… Respondent 8
	Performance of healthcare professionals	And also emotionally, because I was not taken seriously for a long time. Only from the moment I ended up at the Radboud did I really get taken seriously. Respondent 6 Yes, these are people who have chosen healthcare and they radiate that. These are great people, these are the right people in the right place. Respondent 1

MDC, multidisciplinary consultation.

Theme 1: the deleterious effects of pain on overall health

All participants were asked to specify the influence of continuous pain on each of the six dimensions of the Machteld Huber model and the decrease in quality of life due to the pain. The pain had caused an adjustment in lifestyle in all cases, and participants had to establish new goals to achieve in life. For participants, it was hard to maintain social contacts with friends and/or family due to the pain. Most patients described changes in their mental well-being, some had depressive complaints. All participants indicated that the pain had a pervasive impact on all aspects of their lives and the participants asserted that the MDC itself had failed to improve on the six dimensions. In some situations, all available treatments had been provided prior to the MDC, which led to an end of the patient’s journey in the hospital, and occasionally a referral to a rehabilitation program. However, some patients added that treatments offered in the personalized treatment plan provided at the MDC had improved the physical and/or mental well-being. Frequently, psychological support was recommended as a form of treatment, which potentially assisted patients in normalizing pain as a medical condition and coming to terms with their situation.

Theme 2: the importance of design of the MDC

Information

The participants were asked to give their opinion on the information they had received concerning the MDC; this included the information prior to the MDC and during the concluding session at the MDC. Some participants would have preferred a more extensive description of the MDC program and the attending specialists in the information letter prior to the MDC. The information letter should include a brief overview of the contribution of each member to the multidisciplinary team. Some participants would have preferred a more extensive explanation of the advised treatments by the healthcare professionals during the MDC.

Expectations

Some participants’ expectations of the MDC were not met. They had expected a clearer diagnosis, more diagnostics, and/or a solution to the pain, which had not been provided at the MDC. These expectations were not in accordance with the aim of an MDC: defining a personalized treatment plan. Some participants were unaware that, in general and with the exception of the consultation with a psychologist and pelvic floor physiotherapist, all diagnostics have to be finalized before an MDC takes place. These patients felt that a more adequate management of expectations is needed both before (eg, a correct information letter) and during the MDC.

Setting of the MDC

Each participant stated that the MDC should stay implemented in a patient journey and they would prefer an MDC at the start of the care pathway. The general consensus was that the MDC should consist of separate sessions with the specialists of the multidisciplinary team during 1 day. There were no preferences with respect to the order of the specialists, and no recommendations for the program of the MDC. Although the participants liked having sessions during 1 day to reduce hospital visits, the total time of the consults during the MDC should be less than 2.5 hours. The waiting time between the sessions with the various specialist had to be minimalized due to the pelvic pain, which often increases while sitting. In general, the participants felt that their complaints were taken seriously and they appreciated that a personalized treatment plan was made at the MDC. Some participants suggested an additional session, for example, a week after the MDC, to summarize the conclusions and recommendations of the MDC.

Another point that the participants raised was the waiting list (time until the MDC). Some participants had a waiting time of 9 months or longer. This is mainly due to the availability of healthcare professionals. One participant (R8) was worried about the waiting time for the MDC as she had read in the guidelines that chronic pain may be less well treatable over time.

Division mental versus physical aspect

Respondents mentioned the major influence of pain on their mental state. Some participants thought that the current MDC lacks balance between the mental and physical aspects, at the expense of the mental aspects. They suggested a prolonged session with the psychologist or multiple sessions to perform a mental screening.

Shared decision-making

Most participants were positive about the attention paid to shared decision-making during the MDC. There was time for suggestions and questions from patients and they were able to make their own treatment choices.

Composition of the multidisciplinary team

According to the participants, a multidisciplinary approach with the team, as now is, is recommended. The team includes a gynecologist, urologist, pain specialist, specialized pain nurse, pelvic floor physiotherapist and psychologist. When indicated, further specialists should be consulted based on the complaints of the patient. Some participants suggested adding a neurologist, gastroenterologist, dermatologist or primary care providers (other than GP) such as an occupational therapist. They all agreed that specialists without a special interest in chronic (pelvic) pain would have no added value to the team. The suggestion of adding a GP to the consultation was received less positive by the participants, as they mentioned that CPP syndrome is too complex for the GP. One participant (R4) for example stated: “I am in close contact with my GP, but not regarding this problem. In case she had been involved, it would have been very nice, but would not have had any added value”.

Proposed future perspectives on the MDC

The visions of healthcare experts to adjust the MDC were presented to the participants at the end of the interviews. The future perspective presented was to start the care pathway with history taking by a physician or nurse specialized in pelvic pain, immediately followed by the MDC. The MDC would consist of a consultation of the following specialists: gynecologist, urologist, pain specialist, specialized pain nurse, pelvic physiotherapist and psychologist. In contrast to the current situation, diagnostics (eg, physical assessment, ultrasounds or cystoscopy) would then be included in the MDC. At the end of the MDC, there would be a concluding session with the multidisciplinary team to deliberate the personalized treatment plan. The early MDC in the patient journey provides an early multidisciplinary and interdisciplinary approach and treatment. The participants unanimously responded positively to this proposal and endorsed the improvement of care for CPP syndrome patients.

Theme 3: performance of healthcare professionals (knowledge, skills and interaction with patients and colleagues)

Performance

The performance of individual members of the multidisciplinary team was evaluated during the interviews. Overall, the participants rated the members at high added value to the team. The attention for the patients, the professionalism, expertise and level of knowledge were judged of a high quality.

The following quote from R1 illustrates the overall feeling: “…the knowledge is there, the experience, the interaction… Yes, these are persons that choose to work in healthcare, and they excel in it. They are great persons; they are the right persons at the right place. For sure”.

Besides the quality of the team, the ambience in the team was positively assessed by the participants. They felt recognized in their complaints.

Communication

Most participants mentioned a need for improvement in communication concerning the outcome of the MDC to other healthcare professionals in primary and secondary care. More exchange of information would for example help in the treatment given by a pelvic floor physiotherapist.

Availability and a case manager

The majority of the participants mentioned that they missed a case manager which they could contact for questions regarding their pain, treatment or appointments. The accessibility of the treating physicians is suboptimal according to the participants, as they often had to wait several weeks for a response.

Discussion

This interview study provides insights into the experiences and future perspectives of patients with CPP syndrome who had attended the MDC at our center during their patient journey. The three relevant themes were the deleterious effects of pain on the overall health, the importance of design of the MDC and the performance of healthcare professionals (knowledge, skills and interaction with patients and colleagues). The main result is the appreciation of the participants of the MDC. According to participants in this study, the MDC should be an integral part of the care pathway and preferably situated at the start of the care pathway, instead of “somewhere during the patient journey”. The participants highly appreciated the multidisciplinary approach and endorsed the way the multidisciplinary team was composed. However, this overall positive evaluation is not fully in line with the effect of the MDC on the individual patient journeys. Some participants assessed the contribution of the MDC to their individual situation as limited, and they would have preferred more attention to mental aspects.

Implementing the MDC

Participants indicated that in the development of a CPP care pathway the MDC should be implemented and integrated into the standard care for CPP syndrome patients. The MDC provides recognition and affirmation of the complaints of the participants, and the MDC improves the relationship between the patient and the healthcare professionals.

The participants were unanimously positive on the idea to situate the MDC at the start of the care pathway to enhance the quality of care, which is in line with the future perspectives or visions of the healthcare experts. The patients would then receive a personalized treatment plan at the start of the patient journey. They expect that this would result in them being taken more seriously from the beginning and thereby improve their treatment results and prognosis.¹ An additional noteworthy outcome is the participants’ acknowledgment of the importance of a multidisciplinary approach in the total patient journey, which aligns with the current guidelines.¹¹ The composition of our current multidisciplinary team does not need to be changed, as if indicated, other specialists are consulted. Our findings show the importance of a multidisciplinary team from the viewpoint of the patients, which is in line with the literature, that a multidisciplinary team results in an increased patient satisfaction and improved patient outcomes.^{41 42}

The overall positive evaluation of the participants is in conflict with the individual benefits from the MDC for the impact of their pain on the six dimensions of health. Almost all participants addressed stability in the dimensions prior and after the MDC. In retrospect, for some patients, the MDC was the end of their patient journey in the Radboudumc, as they were referred back to the GP or to a rehabilitation program. These patients had to accept that the multidisciplinary team was running out of treatment options. Despite the harsh message regarding the absence of treatment options, the patients appreciated the diligence of the healthcare providers, and the sense of recognition of the pain provided by the MDC was more important than the overall improvement of the pain.

An interesting finding is the noted disbalance in attention for mental aspects according to some participants. They suggested a more thorough mental evaluation with multiple psychological sessions. This is a surprising finding, as we often notice the somatic fixation on an organic cause of the pain, and the fear that healthcare providers think that the pain is “all in the head”, this phenomenon is described by Allaire et al, Wainwright et al, and Fournier for chronic (pelvic) pain.⁴³,⁴⁵ Most available literature focusses on the patients’ perspectives on stigmatization of CPP and the barriers in seeking help.⁴⁶,⁵⁰ Patients often feel ashamed, disbelieved and not taken seriously in their complaints.^{48 49 51} Furthermore, McGowan et al have described that patients miss a holistic approach in the search for a diagnosis and experience a continuous disappointment in the search for an organic cause.⁵¹ Other papers describe the role of the GP in the search for a diagnosis, they often feel incompetent with diagnosing CPP and may refer patients to multiple gynecologists as there is a persistent urge to find a diagnosis.^{48 52 53} This contributes to the patients somatic fixation (on an organic cause of the pain). To provide a holistic approach, the multidisciplinary team in the Radboudumc works in line with the Machteld Huber model and favors a psychological evaluation to assess the influence of pain on the mental well-being.^{37 38} The healthcare providers involved strive for the patients to feel acknowledged, but nonetheless, we notice this fixation on somatic symptoms. As this may be maintained by the reactions of the GP, an improved collaboration with and education of GPs might be effective.

Of importance is, that due to the rising awareness of CPP syndrome, the waiting lists for the MDC are increasing. In the current guidelines, short waiting times are recommended as an improved prognosis was seen in cases of a decrease in time before starting a treatment.^{1 11} The availability of the healthcare professionals is expected to stay stable or to decrease over time, and this will affect the waiting times. However, if the new version of the MDC based on the perspectives of the healthcare experts is implemented at the beginning of the care pathway, the waiting time until a personalized treatment plan should decrease.

In case other clinics plan to implement a multidisciplinary approach for CPP, we recommend an MDC with a multidisciplinary team at least consisting of a gynecologist, pain specialist, urologist, pelvic floor physiotherapist and a psychologist. Preferably, the MDC is planned at the beginning of the patient journey and is combined with the standardized diagnostics, to provide a personalized treatment plan at an early stage in the patient journey.

Strengths and limitations

One of the strengths of this study is that patients’ experiences and future perspectives were explored, in order to be implemented into the new design of the MDC in the CPP care pathway. To be inclusive, the participants in this study formed a heterogeneous population of CPP syndrome patients, which aligns with the characteristics of this group. The results of the study may be helpful in the implementation of care for CPP syndrome patients in other hospitals as well. The results could be of use when updating the (Dutch) guidelines for CPP for the implementation of an early multidisciplinary approach.

A limitation of the study is that it concerns a monocenter study, all patients were female and the participants only participated in their own single MDC, which limits generalizability.

In future research, different centers, nationally and internationally might compare their care for the CPP syndrome population, to identify best practices and to reach a general consensus for the international CPP syndrome guidelines. For evaluation of the effectiveness of the MDC, we will perform a qualitative study that assesses the effects of the MDC at the beginning of the patient journey. We might also ask an external auditor in the future to assess the MDC and the care pathway. The implementation of the standardized care pathway will enable us to better study the effectiveness of the care given to CPP syndrome patients, including the MDC.

Conclusion

This study on interviews with 10 patients with CPP syndrome showed that the MDC, consisting of a gynecologist, urologist, pain specialist, pelvic floor physiotherapist, and psychologist and if indicated other specialists, is highly appreciated by patients with CPP syndrome. Although, they reported limited individual effect, the MDC did improve the relationship between patients and healthcare providers, by the recognition and affirmation of the pain complaints of the patients. Patients agreed to our future perspectives to implement the MDC at the beginning of the patient journey. This may not only improve healthcare but should also reduce the time until a personalized treatment plan.

Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information.