Costs & Coping

Who sets the agenda in endometriosis?

Who sets the agenda in endometriosis?

New efforts aim to put the patient at the center of research and treatment

Patient-centered care isn’t just a buzz word any more, especially when it comes to chronic illness.

At a gathering of endometriosis researchers, clinicians, and patients from around the world, stories emerged about new ways to put the patient at the center of research and care. Throughout a morning’s worth of talks focused on quality of life at the 13th World Congress on Endometriosis in Vancouver, some common themes emerged:

Endometriosis is an invisible, mysterious, chimeric, stubborn disease, the burden of which is often borne silently by those who have the disease. The marks left by the lived experiences of patients with endometriosis are often not physical, and, all too often, women themselves are not asked about care priorities.

Some of the global efforts discussed during the session included a novel patient-supporter-provider partnership in the United Kingdom to set research priorities; inclusion of quality of life as a key measure in a Brazilian surgeon’s research regarding the best way to treat severe endometriosis; and a life coaching approach that has been successfully incorporated into interdisciplinary care of women with endometriosis in New Zealand.


Perspectives on Endometriosis Management

Priority setting
Who decides where the funding priorities lie in endometriosis research? In the United Kingdom, the priorities have been set in a process in which patients, and those who support them, have a full seat at the table.

Andrew Horne, MD, of the University of Edinburgh, Scotland, led a collaboration of patients and clinicians who set priorities for endometriosis research using a novel, inclusive methodology called a priority-setting partnership (PSP).

Researchers and clinicians who are serious about putting the patient at the center of their work in other fields have turned to the James Lind Alliance’s PSP method. The online introduction to the priority-setting methodology acknowledges that, since treatment effects may be uncertain, “patients, carers, and clinicians should work together to agree which, among those uncertainties, matter most and deserve priority attention.”

The PSP process helps balance discussion by addressing the shared interests of all stakeholders and helps ensure that the answers provided by research are of practical use to patients and health care providers. An essential element of the PSP process is that 10, and only 10, priorities emerge by the end.

In building the endometriosis PSP, the steering committee brought together women who have endometriosis and those who support them – researchers, health care providers, and endometriosis advocates. Initially, they cast a wide net to build a list of candidate research questions. An open-ended online survey brought in a total of 4,767 such questions, and 1,225 respondents within the United Kingdom and Ireland participated in the survey. Most of these respondents (70.3%) were women who had received a diagnosis of endometriosis. Health care providers made up 20.2% of respondents. Of these 247 individuals, 39had an endometriosis diagnosis. The remaining respondents were primarily family and friends of endometriosis patients.

Another 111 candidate questions or, in PSP terminology, “uncertainties” came from reviews of the endometriosis literature. A data cleansing effort consolidated duplicate questions and eliminated those that had already been addressed by prior or ongoing work. After two more voting iterations, the top 30 uncertainties were addressed in an in-person workshop that included 26 stakeholders. After what Dr. Horne termed “lively” discussion, the final 10 research priorities emerged.

The results of the partnership’s work were also published in the Lancet (2017 Jun 3;389[10085]:2191-2).

Dr. Horne said that some of the priorities came as a surprise to the clinicians who were part of the process. For instance, raising endometriosis awareness among health care providers was strongly supported by patients. At the top of the list were the quest for a “cure,” insight into the causes of the condition, health care provider education to decrease delayed diagnosis, and the development of a noninvasive screening tool.

Quality of life
What does it look like when patient-focused factors play a prominent role in assessing treatment efficacy? One researcher is taking a hard look at quality of life issues for women who have deep infiltrating endometriosis with intestinal involvement.

When endometriosis affects the gut, the symptoms can include either diarrhea or constipation, abdominal pain, rectal bleeding, and, rarely, even bowel obstruction, said Rose Maria Neme, MD, PhD, director of the endometriosis center at the University of Sao Paulo, Brazil.

All of these gastrointestinal symptoms, she said, occur in addition to the impaired quality of life experienced by many women with endometriosis. Deep infiltrating endometriosis is seen in 20% of all endometriosis cases, with the gastrointestinal tract being involved up to 12% of the time.

These patients may face an additional burden beyond the impaired quality of life that often comes with endometriosis in any form. The disease is associated with decreased activity, social isolation, and poor work performance. Family and friend relationships are affected as well, and infertility brings its own set of stresses.

Dr. Neme and her colleagues examined changes in quality of life in the year following laparoscopic bowel resection to treat deep endometriosis. The prospective study included 295 women with endometriosis and intestinal involvement that included the muscularis. About a quarter of the patients (27%) had already undergone one surgical treatment for endometriosis, and 8% had undergone two or three prior surgeries.

Before surgery, patients reported being deeply affected by their disease. At baseline, three quarters of patients had dyspareunia, 97% had dysmenorrhea, and pain with defecation was reported by 84%. Nearly all patients (95%) reported diarrhea or constipation as well.

On scheduled follow-up at 6 and 12 months after surgery, patients had both a physical examination and a transvaginal ultrasound examination after bowel preparation. They also reported endometriosis-related symptoms. Patients received postsurgical medical therapy as appropriate for symptom management and to prevent recurrence.

Patients completed the validated Brazilian version of the Short Form Health Survey (SF-36) quality of life questionnaire before their surgery and at the 6- and 12-month follow-up appointments. The researchers paid attention to patients’ self-reports of physical and social functioning, as well as social and emotional subscales.

“Patients with the poorest results on the initial quality of life questionnaire showed the greatest improvements after 1 year,” Dr. Neme said.

Overall, patients had significant improvement in both physical and mental aspects of quality of life by 6 months after surgery, and the results were sustained at 1 year. The results are reassuring both for patients and their physicians when considering laparoscopic bowel resection for endometriosis with transmucosal involvement, Dr. Neme said.

Wellness coaching
A multidisciplinary approach that incorporates patient-centered wellness coaching can significantly improve quality of life for patients with endometriosis, as shown by 15 years’ experience in New Zealand.

Deborah Bush is the chief executive officer for Endometriosis New Zealand and also maintains a private practice focused on endometriosis and pelvic pain (EPP) coaching and consulting. The EPP coaching model integrates coaching services for women and girls who have endometriosis and pelvic pain into existing treatment centers, complementing primary and gynecologic care.

“Patients are referred by their specialist gynecologist or their [general physician] following surgical diagnosis of endometriosis, but they may also self-refer,” Ms. Bush said.

The initial 1 hour EPP session gathers information about a patient’s history and assesses her knowledge base and beliefs about endometriosis. A key part of the session is to ask the patient, “What matters to you?” in order to determine goals and preferred outcomes, Ms. Bush said. Then, an evidence-based self-management plan is developed jointly. Components of the plan often include diet, exercise, cognitive-behavioral therapy, and a roadmap for the future.

Communication with the treating physician is a key part in integrating the coaching services into patient care, so the treating gynecologist is provided detailed notes from the consultation. Ms. Bush said she also suggests referrals to physiotherapists, clinical psychologists, pain management specialists, and dietitians.

Ms. Bush has been conducting EPP coaching clinics since 2001 and has seen more than 1,500 patients. An anonymous survey of 28 program participants (46.4% of those seen during the 2-month time period) found that all respondents found the clinic either “very” or “extremely” helpful. Most (92.3%) felt that their understanding of endometriosis and pelvic pain had been improved by the process. However, fewer than half (46.2%) said that they had tried new lifestyle management options as a result of the coaching process. About half of the patients (54%) were younger than 25 years old.

In a small survey of five gynecologists whose patients received EPP coaching, all physicians found the service useful, Ms. Bush reported. A remark she frequently gets from gynecologists, she said, is that it’s good for patients to be seen in a nonmedical setting, where they have the time to be heard and where more detailed teaching can be done.

Patient goals may not be clinical
The type of coaching and referral services Ms. Bush provides can vary widely. Patients often live with endometriosis for many years before being diagnosed and may still struggle either to find effective treatment or with the side effects of medical management or of multiple surgeries. Figuring out the patient’s current situation is essential to helping her define and prioritize achievable goals, she said.

Sometimes the goals have nothing to do with endometriosis itself. Ms. Bush recalled the story of a woman who currently is pain-free and who was able to conceive naturally after several years of hormonal contraception. Years of multiple consultations and five laparoscopic procedures had left her feeling isolated and exhausted. Her primary request? She wanted help in re-engaging in relationships with the people close to her.

The effects of a 5-year delay between symptom onset at age 12 and diagnosis at age 17 continued to impact another client of Ms. Bush’s. In her intake paperwork, this 22-year-old woman asked for help “to get over the anger of being disbelieved for over 4 years.”

Even when pain is persistent and frequent, it’s the day-to-day considerations that are often uppermost in women’s minds, Ms. Bush said. A 40-year-old client still has pain about half the days of the month, despite eight laparoscopic surgeries and multiple pain management consultations. This woman wanted help juggling her symptoms along with full-time work and family obligations, and then clarified that she wanted help finding “ways I can articulate to them what this has meant to me.”

Ms. Bush said that she sees her task as helping to harmonize patient goals and clinician goals, which may be at odds with each other. Sometimes, the problem is just one of communication or a failure to recognize that “there’s usually more than one path forward,” she said. However, “decision-making power is defined by who is writing the agenda,” she said, and the EPP coaching process helps women with endometriosis set their own wellness agendas.

Dr. Horne, Dr. Neme, and Ms. Bush reported having no relevant financial disclosures.

Kari Oakes and M. Alexander Otto are writers for Ob.Gyn. News.