The Patient Perspective on Colectomy for Recurrent Diverticulitis: A Qualitative Study

Abstract

Objective:

Understand the patient decision-making process regarding colectomy for recurrent diverticulitis.

Summary Background Data:

The decision to pursue elective colectomy for recurrent diverticulitis is highly preference sensitive. Little is known about the patient perspective in this decision-making process.

Methods:

We performed a qualitative study utilizing focus groups of patients with recurrent diverticulitis at three centers across the United States. Using an iterative inductive/deductive approach, we developed a conceptual framework to capture the major themes identified in the coded data.

Results:

From March 2019-July 2020, 39 patients were enrolled across three sites and participated in six focus groups. After coding the transcripts using a hierarchical coding system, a conceptual framework was developed. Major themes identified included: participants’ beliefs about surgery, such as normative beliefs (e.g., subjective, value placed on surgery), control beliefs (e.g., self-efficacy, stage of change) and anticipated outcomes (e.g., expectations, anticipated regret); the role of behavioral management strategies (e.g., fiber, eliminate bad habits); emotional experiences (e.g., depression, embarrassment); current symptoms (e.g., severity, timing); and quality of life (e.g., cognitive load, psychosocial factors). Three sets of moderating factors influencing patient choice were identified: clinical history (e.g., source of diagnosis, multiple surgeries), clinical protocols (e.g., pre- and post-op education) and provider-specific factors (e.g., specialty, choice of surgeon).

Conclusions:

Patients view the decision to undergo colectomy through three major themes- their beliefs about surgery, their psychosocial context and moderating factors that influence participant choice to undergo surgery. This knowledge is essential both for clinicians counseling patients who are considering colectomy and for researchers studying the process to optimize care for recurrent diverticulitis.

MINI-ABSTRACT

Understanding the patient decision making process regarding colectomy for recurrent diverticulitis is essential for shared decision making. We performed a qualitative study utilizing focus groups of patients with recurrent diverticulitis at three centers across the United States that resulted in creation of a conceptual framework. Patients view the decision to undergo colectomy for recurrent diverticulitis as an important yet complex process.

INTRODUCTION

Nearly 3 million Americans are diagnosed with acute uncomplicated diverticulitis annually, and up to 25 per cent have a recurrent episode.^1–3 Many of these patients recover to their baseline, but some may have multiple attacks. Colectomy can offer a 95% success rate at cure ⁴ but comes with substantial risk of potential morbidity. ^{5,6 7} The decision to undergo colectomy for secondary prevention is a highly preference sensitive choice. National guidelines from the American Society of Colon and Rectal Surgeons recommend that “the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized.” ⁸

The decision process to pursue a colectomy remains a work in progress. Surgeons find it difficult to adequately counsel patients regarding the patient-specific risks of various treatments for recurrent diverticulitis. ⁹ Decision regret following management of recurrent diverticulitis ranges from 17–32%.^10,11 Previous qualitative work has proposed several themes regarding the impact of diverticulitis on a patient’s physical and emotional well-being, including: physical symptoms; ability to care for others; restrictions in ability to do daily activities; anxiety, frustration or irritation because of diverticulitis; and concern about the disease causing permanent damage. ¹²

To engage in shared decision making with patients, it is essential to understand the patient’s perspective. However, a clear knowledge gap exists specifically on the patient’s perspective when considering elective colectomy for diverticular disease. To address this, we performed a multi-center qualitative research study to determine factors that patients weigh when considering resection for diverticular disease.

METHODS

Study Design

This was a qualitative study carried out in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) Publications Guidelines. ¹³ We conducted six focus groups with patients with a history of diverticulitis. To minimize institutional treatment bias and to maximize voices heard, we conducted focus groups at three major medical centers (Vanderbilt University Medical Center (VUMC) in Nashville TN, University of Michigan (UM) in Ann Arbor MI and the Washington University (WUSTL) in St Louis MO. The study was reviewed and approved by the Vanderbilt University Institutional Review Board (Protocol 181400). Informed consent was obtained.

Patients with diverticulitis were identified from the medical record and recruited at each site via email, phone and letter. We sought a mix of patients who had and had not undergone colectomy for their diverticular disease. We excluded patients who had undergone emergency surgery given these patients did not face a discrete choice.

For each focus group, open-ended scripted questions were asked using a moderator guide (Supplemental Section 1). These questions were developed via a structured process by both colorectal surgeons and a PhD-level psychologist with expertise in qualitative research. The interview guide was trialed by three patients that did not participate in the focus groups. Follow-up questions were asked for clarity purposes and to facilitate discussion. Focus groups were conducted in person at VUMC and UM and via video conference at WUSTL due to the COVID-19 pandemic. The VUMC and WUSTL focus groups were facilitated by KB, who has a master’s degree in social psychology and over 10 years’ experience in qualitative research. The UM focus group was conducted by AH, an MD/MPH with extensive training in qualitative research. KB was unable to make the trip to UM. The study group felt that 1) the benefit of an in person focus group outweighed the use of an alternate moderator and 2) the use of an alternate moderator might allow for further exploration of the topic. There was no perceived bias or assumptions in the facilitators. Participants had no prior knowledge of the facilitators. Participants were compensated with a $50 gift card. Sample size was determined by thematic saturation.¹⁴ Once the research team appreciated that no additional data was being discovered, no additional focus groups were conducted.

Focus groups were audio recorded and transcribed. Transcripts were not reviewed by participants. Qualitative data coding and analysis was managed by the Vanderbilt University Qualitative Research Core. A hierarchical coding system was developed and refined using the focus group moderator guide and a preliminary review of the transcripts. Major categories were further divided from one to nine subcategories, with some subcategories having additional levels of hierarchical division. Definitions and rules were written for the use of coding categories.

Experienced qualitative coders first established reliability in using the coding system on two transcripts. Coding of each transcript was compared, and discrepancies were resolved through a reconciliation process. A total of two coders then independently coded the remaining transcripts. Analysis was conducted using an analytic spreadsheet that contained all the codes, the associated quotes, and any contextual text (e.g., interviewer question) needed to further understand the quote.

Analysis

Using an iterative inductive/deductive approach, we developed a conceptual framework to capture the major themes identified in the coded data. ^15–17 Deductively, we used Social Cognitive Theory, the Health Belief Model ^18–20 and the Theory of Planned Behavior^21,22 to understand influences on individual behavior and the decision to undergo colectomy. Inductively, we used the coded quotes to identify higher-ordered themes and relationships between themes. The process was iterative in that the framework is theoretically informed while the detailed content is derived inductively from the qualitative data. Participants did not provide feedback on findings.

RESULTS

We enrolled 39 patients across three sites and conducted a total of six focus groups. This sample size exceeded the median number of participants in a large systematic review of qualitative research.²³ These were performed from March 2019-July 2020. Patient demographics are reported in Table 1. The median duration of focus groups was 97.5 minutes.

Table 1-.

Demographics of Participants

Variable	n=39
Age, yr, mean (range)	54.5 (29–82)
Female	22 (56%)
Hx of Colectomy	22 (56%)
Race
White	35 (90%)
Black	4 (10%)
Highest Grade Completed
High School	8 (20%)
College	19 (49%)
Graduate School	12 (31%)
Marital Status
Single	11 (28%)
Married	24 (61%)
Widowed	3 (8%)
Divorced	1 (3%)
Employment Status
Employed	24 (63%)
Unemployed	2 (5%)
Retired	7 (18%)
Disabled	4 (10%)
Other	1 (3%)
Site
VUMC	25 (64%)
UM	9 (23%)
WUSTL	5 (13%)

Figure 1 presents the conceptual framework. On the left are two sets of contextual rings interacting with each other in a dynamic fashion. The inner ring, derived from the Theory of Planned Behavior, represents participants’ beliefs about surgery and includes normative beliefs (e.g., subjective, value placed on surgery), control beliefs (e.g., self-efficacy, stage of change) and anticipated outcomes (e.g., expectations, anticipated regret). The outer ring represents the patient’s psychosocial context and includes behavioral management strategies (e.g., fiber, eliminate bad habits), emotional experiences (e.g., depression, embarrassment), current symptoms (e.g., severity, timing) and quality of life (e.g., cognitive load, psychosocial factors).

Figure 1-.

Conceptual Model

The central portion of the figure is three stacked arrows that identify moderating factors that influence participant choice to undergo surgery. Three sets of factors are identified: clinical history (e.g., source of diagnosis, multiple surgeries), clinical protocols (e.g., pre- and post-op education) and provider-specific factors (e.g., specialty, choice of surgeon). The right of the figure represents the deliberation then decision about accepting surgery.

In the remainder of the results, we will discuss each element of the conceptual framework in detail and illustrate with quotes. Surgery status of the subjects providing the quotes is designated as underwent surgery (+ surgery) or did not undergo surgery (- surgery). Supplemental quotes for each theme are in Supplemental Table 1.

PSYCHOSOCIAL CONTEXT

Symptoms

Symptoms are characterized by the subjective experience of mental or physical states that indicate a deviation from good health and well-being. Many participants described experiencing severe and painful physical symptoms that motivated them to seek medical care.

“…I woke up one morning and had really …bad gas pain, it was just the worst that I would have ever felt. …The pain got worse throughout the day, … the pain had gotten so bad I thought I was gonna pass out….” (+ surgery)

Most patients misattribute the pain to some other problem that is more familiar. When the pain becomes unbearable, seeking treatment in an emergency department results in the initial diagnosis of diverticulitis. Memory of this pain is a contextual influence over deciding about surgery.

Quality of Life

Quality of life is an individual’s perception of their position in life relative to valued goals and outcomes. Most participants reported that their quality of life declined after the onset of diverticulitis. Many participants described how diverticulitis had negatively affected their ability to engage in valued activities including family relations, physical activity, recreation, work and social events.

“You can’t be a dad because you can’t go to these things because you feel like you’ve got all this overwhelming physical, not emotional, physical stuff going on.” (+ surgery)

This diminished quality of life affects not only the patient but also their relationships with their loved ones:

“… It was really more of a stressor on her [wife], I think, than it was me.” (+ surgery)

Participants who declined surgery expressed that diverticulitis has not significantly affected their quality of life and changed what they are able to do. Overall, most participants reported greatly reduced quality of life resulting from diverticulitis affecting what they can do, how they spend their time, engage with others and view themselves. Restrictions of valued daily activities are an important consideration in the decision-making process.

Management Strategies

Management strategies are what individuals do to cope with the physical effects of diverticulitis such as pain, constipation, or diarrhea. Management strategies also include the actions participants take to maintain their overall health and treat symptoms when not utilizing formal medical care. Many participants reported using medications such as antibiotics and ibuprofen to manage the pain associated with diverticulitis. Participants also reported modifying certain aspects of their lives such as exposure to stressors, diet, and vitamins to manage their diverticulitis. Some participants who made lifestyle changes to manage their diverticulitis went through long periods of trial and error to determine what worked best for them. These experiences portray how having a limited understanding of diverticulitis affected participants’ ability to identify management strategies that worked.

Knowledge and Understanding

Knowledge and understanding represents how well individuals comprehend diverticulitis along with their desire to know more about diverticulitis, including knowing about causes, triggers and treatments. Most participants reported feeling unsure about their understanding of diverticulitis. Participants described seeking information from doctors, conducting independent research of their own and utilizing online support groups.

“I can’t figure out what causes it. … I don’t know what triggers mine.” (- surgery)

Although most participants expressed having a limited understanding of diverticulitis, many participants expressed the desire to learn more and sought informational sources of their own. Participant understanding influenced how confident they felt managing their diverticulitis such as knowing what to eat and knowing what triggers episodes. Even after seeking information, some still had unanswered questions about their condition and its management.

Emotional Response

Experiencing diverticulitis elicits strong psychological responses that are influenced by one’s perceived quality of life and understanding of the illness. Most participants reported reacting with negative emotions such as anxiety, frustration, insecurity and embarrassment.

“I think the mental side of it…has been almost a bigger part of it than the actual attacks themselves.” (- surgery)

BELIEFS ABOUT SURGERY

Normative Beliefs

Normative beliefs are attitudes and values associated with a given person, setting or idea that create expectations about what to think, feel or do in certain places or situations. ^21,22 Two subcategories are identified: injunctive and descriptive normative beliefs. Injunctive normative beliefs are associated with perceived approval or disapproval from important others around thoughts and behaviors. This participant’s decision to undergo surgery was partially influenced by the approval of family, friends and neighbors.

“…I talked to my friends and my neighbors, and my family, and it was like, this is what I need.” (+ surgery)

Descriptive normative beliefs are associated with the perception of how others behave.²⁴ In our data, descriptive norms related to expectations about why someone should or ought to choose surgery and beliefs about how well one can trust doctors and the healthcare system. Some participants perceived a role for legalities and malpractice involved in being offered surgery. These beliefs about family and the health care system provide part of the context used to make decisions about surgery.

Control Beliefs

Control beliefs are typically expressed as factors, real or imagined, that facilitate or hinder engaging in a behavior. ^21,22 Beliefs about the ability to have control over the effects of surgery are important, especially beliefs about managing pain, taking care of everyday needs and finding the time needed to recover.

“.. any surgical procedure has huge risks… You have life restrictions after that, and as a caregiver … you need time to work through that and think about planning…” (+ surgery)

Behavioral Beliefs/Anticipated Outcomes

Behavioral beliefs are associated with anticipated outcomes because of a given behavior.^21,22 By examining behavioral beliefs associated with surgery, we identified the need for person-centered decision-making techniques.

MODERATING FACTORS

Clinical History

Clinical history includes the onset of symptoms, the process of getting diagnosed, the history and intensity of symptoms, underlying severity of diverticulitis, the number of repeated episodes, strategies used to manage episodes without surgery, relevant comorbidities, past surgeries and history of complications.

Magnitude of Symptoms

The pattern, severity, timing and recurrence of symptoms all can influence the decision to have surgery. Symptom magnitude is a facilitator to the decision to undergo surgery.

“It was an easy decision. I’d had it four times in less than a year, and … I just couldn’t deal with the pain anymore.” (+ surgery)

For several participants, aversion to antibiotics facilitated the decision to undergo surgery.

“…the antibiotics greatly contributed to my decision to go forward with this because it was just awful, terrible, the worst…I can still taste and smell the Cipro and Flagyl.” (+ surgery)

Health Complexity

Complex health conditions, chronic illnesses and comorbid conditions can influence judgments about the risks and benefits of surgery. With other more severe medical issues, patients saw surgery as less necessary.

Prior Health System Experiences

Participants described an array of prior health system experiences. Both positive and negative experiences with healthcare and providers can influence decision-making.

“I just had such a hard time overall, medically, getting diagnosed and getting treatment that made sense” (- surgery)

In addition to first-hand experiences, past health system experiences included family experiences.

“My mother-in-law had the surgery electively, and she recovered great.” (+ surgery)

Other participants witnessed devastating outcomes. There are many aspects of an individual’s medical history that can influence the decision-making process. This includes previous conditions, past surgery, comorbidities and knowledge about how diverticulitis surgery affected others, especially family members.

Clinical Protocols

Clinical protocols include the ways that the surgeon and/or other providers engage the patient in the decision-making process. We identified three major themes including patient education, the proposed surgical procedures with disclosure of the potential risks and benefits and the costs of different treatment options.

Costs

Cost can influence a patient’s willingness to choose surgery. Medical decisions are sensitive to insurance coverage (or lack of coverage) and out of pocket costs.

Patient Education

Participants talked about written patient education materials that were full of jargon and which contain a lot of detail about potential complications invoking fear more than understanding:

Proposed Surgical Procedure

When offering surgery as an option for diverticulitis, the surgeon needs to explain the procedure along with the potential risks and benefits. Participants provided their reflections on how the surgery was explained, and for some, how that influenced their decision.

“My visit, he explained everything…. all the possible complications, recovery times, … and that all ended up true.” (+ surgery)

Provider

The characteristics and skills of the surgeon is the third theme identified as a moderator of a patient’s decision to have surgery. Three subthemes were identified: the surgeon’s specialty and training, the specific recommendation made by the surgeon and the ability of the surgeon to communicate effectively.

Specialty

Patients with diverticulitis can follow many pathways to consulting with a surgeon about their condition. A key factor identified by some participants was whether the surgeon was a general surgeon or one who specialized in colorectal surgery.

“…if I’m going to have colon surgery, I want a colon surgeon to do it not a general abdominal surgeon or something of that nature.” (+ surgery)

Recommendation

Surgeons have different approaches to making recommendations, often depending on the clinical details. How the recommendation is delivered can have an important effect on the decision-making process. A strong recommendation with a clear statement of benefit can be very influential. Patients often receive conflicting information.

“Well at first, it was like he (non-specialist) said, “You gotta have the surgery”, then when I got to the specialist … they said, ‘No, sir. We look at your scans and this that and the other and it looks like you’re good.’” (- surgery)

Quality of Communication

Communication skills are an important part of medical training and play an important role in promoting patient-centered decision making.

“… I asked these very in-depth questions about effects, and things that could be and couldn’t be, and he, off the top of his head, answered them boom, boom, boom. I was very impressed…” (+ surgery)

“I feel like after I left talking to the surgeon that I was more confused.” (- surgery)

Patients are sensitive to the communication style and skills of the providers. A skilled communicator can put the patient at ease while providing details about risks and benefits and answering a patient’s questions. Poor communication can leave patients feeling frustrated and confused.

DISCUSSION

To address a lack of sufficient knowledge about the patient’s perspective when considering colectomy for recurrent diverticulitis, we conducted a multicenter qualitative study of patients with diverticulitis. Using data collected from six separate focus groups at three geographically diverse centers, we developed a conceptual model that frames the issues patients consider when contemplating a colectomy. These include psychosocial context, beliefs about surgery and moderating factors that lead to a decision/intention. This data is crucial both to inform shared decision making in this area and to identify areas of future study.

In the analysis, there were several unexpected results, with important implications for clinical care. First, the focus on pain was nearly ubiquitous. Subjects mentioned this in the context of symptoms, quality of life and as a motivation to pursue surgery. The authors were surprised at the frequency that pain was cited in the decision-making process. Second, the provider is an important influencer on decision making. Patients clearly sought a surgeon’s guidance in terms of assessment of severity of diverticulitis, risk and benefits of surgery and an overall recommendation. We identified three distinct subdomains of provider involvement, including specialty, recommendation, and quality of communication. Finally, the authors appreciated a theme of how patient confusion about diverticulitis influenced the decision-making process. This included information on the diagnosis and natural history of diverticulitis, the prognosis for future episodes, the options available and difficulty framing the decision. All these points offer opportunities to improve the decision-making process.

This work extends previous research in the field of decision-making for recurrent diverticulitis. In the process of creating a disease-targeted quality of life instrument for chronic diverticular disease, Spiegel et al identified five domains relevant to surgical decision making – physical symptoms; caretaking; restrictions daily activities; anxiety, frustration or irritation because of diverticulitis; and concern about the disease causing permanent damage. ¹² This current study builds on this effort and adds the frameworks of Social Cognitive Theory, the Health Belief Model and the Theory of Planned Behavior to understand influences on individual behavior and the decision to undergo colectomy. Hantouli et al sought to describe how the domains identified by Spiegel were used in decisions on surgical intervention from patient and surgeon perspectives. ²⁵ They observed that physical symptoms and restrictions were most often considered important by both surgeons and patients when making surgical decisions and had the highest agreement. Caretaking, anxiety and concern about permanent damage – domains considered important for patients – were considered important less often by surgeons. Overall, concordance in patient-surgeon dyads was low (under 70% for all domains) suggesting ongoing gaps in the shared decision-making process. Previous work by DeRoo et al identified number of episodes, severity of episodes and patient preference as factors that strongly influenced decision making. ²⁶ Finally, this work builds on this author group’s previous study examining the surgeon perspective of this decision-making process.²⁷ Notable concordance from that study and this include the importance of comorbidities, the focus on quality of life and the psychosocial context of the patient. An area of discordance was that surgeons focused more on the technical aspects of the procedure while patients paid more attention to their prior health system experiences. In addition, commonly held surgeons’ perceptions – that patients are worried solely about ostomies and wounds – proved to be overly simplistic.

This study is not without limitations which may impact any conclusions drawn from the analysis. Though saturation was achieved within our three centers, these were academic medical centers. Understanding that surgeon density and market competition are drivers for colonic resection for diverticular disease,²⁸ the lack of inclusion of patients treated in a private practice setting may limit generalizability. Additionally, as a qualitative study, the study is subject to the inherent biases of the staff conducting the study. To minimize this bias, all key study personnel involved with the study have extensive training in qualitative methods.

Both the results and conclusion of this study have broad-reaching implications that impact clinicians and researchers. Patients face a complex decision-making process when considering colectomy for recurrent diverticulitis. Clinicians need to be aware of both the many factors considered as well as the complexity of the decision when discussing a colectomy with patients. Highlighted in this study is the importance of the quality of communication with the surgeon. For researchers, the conceptual model derived from this study can be leveraged to generate and test hypotheses surrounding the decision-making process. The patient’s focus on quality of life should drive researchers to use QoL as a primary endpoint for any efficacy studies on management of diverticulitis. Fortunately, several contemporary studies have started this effort.^29–32

Going forward, this study highlights several areas for improvement in the care of patients with recurrent diverticulitis. The complexity of the decision-making process coupled with the need for high quality communication speak to the potential benefit of a robust decision aid. Educational decision aids and shared decision-making programs previously have been shown to improve outcomes in surgical diseases such as prostate cancer,³³ breast cancer³⁴ and joint replacement.³⁵ Recurrent diverticulitis shares features with joint replacement; both are benign processes that are driven by an improvement in quality of life. Patient uncertainty regarding diverticulitis should spur further research around the natural history of disease and efficacy of treatment options. Several exciting potential areas include trials ³⁶, development of polygenic risk scores ²⁶ and risk prediction models.³⁷ Further longitudinal studies are necessary to better predict recurrence. This will greatly aid in decision making about a possible colectomy. Finally, comparative study of responses between patients who had surgery versus those who did not will aid in further understanding of this decision process.

Supplementary Material

Supplemental Data File 1

Supplemental Table 1- Representative Quotes by Context, Theme and Sub-Theme

Supplemental Section 1- Focus Group Moderator Guide