Counseling to Optimize Adherence in Expectant Mothers With Inflammatory Bowel Disease

NCT ID: NCT03091309

Last Updated: 2018-09-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Clinical Phase

NA

Total Enrollment

220 participants

Study Classification

INTERVENTIONAL

Study Start Date

2017-10-01

Study Completion Date

2020-10-01

Brief Summary

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Inflammatory Bowel Disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract that comprises two subtypes, Crohn's disease (CD) and Ulcerative Colitis (UC). Because the risk of IBD is greatest during the third decade of life, its impact for women is during the reproductive years. Women with inflammatory bowel disease are at a 2-fold higher risk of adverse outcomes during pregnancy as compared to the general population. Pregnancy is an especially vulnerable time for women with IBD, and out of misguided concerns that medications may confer unnecessary harms to their fetus, many women often stop taking life savings medications; without realizing that this sub-optimal adherence could actually lead to life threatening complications for them and their fetus. Counseling pregnant women with IBD is therefore an important step in improving medication adherence. The investigators hypothesize that counseling sessions with an IBD nurse that incorporates motivational interviewing and telemedicine-based follow-up sessions tailored to individual needs will improve medication adherence and pregnancy outcomes.

The following specific aims are to be addressed by this multi-center randomized clinical trial comparing individual nurse-based counseling to standard of care:

Specific Aim #1: To assess whether patient-centered counseling incorporating motivational interviewing and telemedicine-based follow-up by an IBD nurse leads to improved medication adherence during pregnancy and pregnancy outcomes

Specific Aim #2: To validate the use of self-reported medication adherence during pregnancy in the IBD population

Detailed Description

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IBD and Pregnancy: Inflammatory bowel disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract that comprises two subtypes, Crohn's disease (CD) and Ulcerative Colitis (UC), Canada has among the highest reported incidence of CD and UC in the world, as high as 20.2 and 19.5 per 100,000, respectively. Because the risk of IBD is greatest during the third decade of life, its greatest impact for women in during the reproductive years. In comparison to the general population, women with IBD have a significantly higher risk of pregnancy related complications.

IBD Disease Activity and Outcomes: Active IBD symptoms during pregnancy significantly increase the risk of preterm birth. Furthermore, women with IBD who suffer a relapse during pregnancy, requiring hospitalization, are more likely than their asymptomatic counterparts to delivery preterm birth and low birth weight newborns. More than two-thirds of women who have active disease at the time of conception will have continued or worsened symptoms during pregnancy. In contrast, women who are asymptomatic at conception are half as likely to have active disease during pregnancy. This data underscores the importance of achieving disease remission prior to conception and aggressively treating relapses during pregnancy.

Medication Adherence During Pregnancy: Despite the safety of most IBD medications, most pregnant women with IBD exhibit low medication adherence rates. Medication non-compliance is often linked to concerns that IBD medication may confer unnecessary harm to the fetus. Most women have reported that they would rather endure symptoms of IBD rather than confer risk to the fetus, without realizing that active IBD itself is strongly associated with adverse pregnancy outcomes. Consequently, most of these women decrease the dosage or stop their medications without informing their treating physicians, thus comprising treatment.

Motivational Interviewing Adherence: Motivational Interviewing (MI) refers to a patient-centered process in which a health care provider employs specific communication skills and strategies that facilitate the patients confidence and decision making, while emphasising respect for autonomy. A key feature of MI is that the counselling process induces behavioural change by triggering and channelling a patient's internal motivations for change. Previous clinical trials have demonstrated the effectiveness of MI in improving medication adherence for various chronic condition, including diabetes, hypertension, obesity and HIV. In a small study of IBD subjects, MI was associated with positive patient perceptions of the physician-patient relationship. In another pilot study, nurse-administered MI in UC patients was associated with medication adherence as high as 90%.

Rationale: Pregnancy is an especially vulnerable time for women with IBD. During this critical window of time, even brief lapses in medication adherence can lead to sub optimal control of IBD disease activity that can lead to life-threatening complications to both mother and fetus. Adverse outcomes such as preterm delivery have long-term implications for the children of mother with IBD. Out of misguided concerns for their fetus, many women may stop lifesaving medications. Educating pregnant women with IBD is an important step in improving adherence rates, but tools such as motivational interviewing have proven to be much more powerful. As such the primary objective of this study is to assess, through a multi-center clinical trial, whether patient-centered counselling incorporating motivational interviewing and telemedicine-based follow-up by an IBD nurse leads to improved medication adherence during pregnancy and improved pregnancy outcomes. The investigators hypothesize that patient-centered counselling will result in higher medication adherence rates and improved pregnancy outcomes.

Design: The investigators will conduct a multi-center randomized controlled clinical trial that includes 3 University of Toronto affiliated hospitals (Mount Sinai Hospital, University Health Network, and Women's College Hospital) and the University of Calgary.

Study Population: The investigators will enroll 220 pregnant women who have or will be seen by: an obstetrician or maternal fetal specialist at Mount Sinai Hospital or the University of Calgary; or a gastroenterologist at Mount Sinai Hospital, University Health Network, Women's College, or the University of Calgary who meet the inclusion criteria.

Significance: This clinical intervention has the potential to directly impact inflammatory bowel disease patients by reducing complications of the disease during pregnancy. Motivational interviewing can potentially improve adherence and optimize the impact of IBD medical therapies. Most tertiary centers already have clinical IBD nurses. The structured training of an IBD nurse to counsel pregnant women through motivational interviewing is a reproducible intervention and can be used at tertiary centers throughout the country. Because poor disease control can lead to preterm delivery, which is associated with lifelong chronic illnesses, patient-centered counselling would not only ameliorate the IBD health of mothers, but also improve the lives of their children. Findings from this study would also allow physicians to lobby provincial health ministries to request funds for IBD nurse counsellors.

Conditions

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Inflammatory Bowel Diseases Medication Adherence Crohn Disease Ulcerative Colitis

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

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Intervention

Patients randomized to the intervention group will receive a multi-faceted intervention consisting of: (1) Interactive educational video; (2) Initial in-person counseling with an IBD nurse; (3) Motivational interviewing; (4) Telemedicine-based follow-up; (5) Monthly follow-up questionnaires; and (6) Comprehensive questionnaires.

Group Type EXPERIMENTAL

Interactive educational video

Intervention Type OTHER

A web-link to an educational video on IBD and pregnancy tailored to emphasize the importance of optimal disease control and medication adherence.

Initial in-person counseling with an IBD nurse

Intervention Type BEHAVIORAL

This session will emphasize key points from the educational video and the nurse will answer any additional questions the subject may have. The nurse will assess subjects' medication adherence and specifically query any concerns subjects may have regarding specific medications and discuss their intentions to be adherent throughout pregnancy.

Motivational interviewing

Intervention Type BEHAVIORAL

The nurse will be trained in a technique known as motivational interviewing (MI) specifically adapted for optimizing medication adherence during pregnancy.

Telemedicine-based follow-up

Intervention Type BEHAVIORAL

The IBD nurse will arrange follow-up visits with each subject on a monthly basis with additional ad-hoc sessions as needed. The encounter will focus on monitoring disease activity adherence and applying MI communication skills to reinforce and improve the latter.

Monthly follow-up questionnaires

Intervention Type OTHER

Web-based short questionnaires, administered monthly, will be used to assess medication adherence \[self-reported using the 5 item Medication Adherence Report Scale (MARS-5)\] and IBD related disease activated \[self-reported using PRO-2 scale for Crohn's Disease related disease activity and 6-Point Mayo Score for Ulcerative Colitis related disease activity\].

Comprehensive questionnaires

Intervention Type OTHER

Web-based detailed questionnaires, administered at enrolment and gestational week 34, will be used to assess medication adherence \[self-reported using the Medication Adherence Report Scale (MARS-5)\], patient trust in physician \[self-reported using the Trust in Physician Scale (TIPS)\], IBD related disease activated \[self-reported using the PRO-2 or 6-Point Mayo Score\], IBD-specific health related quality of life \[self-reported using the Inflammatory Bowel Disease Questionnaire (IBDQ)\], patient satisfaction \[self-reported using the Patient Satisfaction with Healthcare in Inflammatory Bowel Disease (CACHE) questionnaire\]and IBD specific knowledge \[self-reported using the Crohn's and Colitis Knowledge (CCKNOW) questionnaire\].

Control

Patients randomized to the control group will complete the comprehensive questionnaires and will continue to receive the standard of care consistent with their condition, at their respective institution.

Group Type ACTIVE_COMPARATOR

Comprehensive questionnaires

Intervention Type OTHER

Web-based detailed questionnaires, administered at enrolment and gestational week 34, will be used to assess medication adherence \[self-reported using the Medication Adherence Report Scale (MARS-5)\], patient trust in physician \[self-reported using the Trust in Physician Scale (TIPS)\], IBD related disease activated \[self-reported using the PRO-2 or 6-Point Mayo Score\], IBD-specific health related quality of life \[self-reported using the Inflammatory Bowel Disease Questionnaire (IBDQ)\], patient satisfaction \[self-reported using the Patient Satisfaction with Healthcare in Inflammatory Bowel Disease (CACHE) questionnaire\]and IBD specific knowledge \[self-reported using the Crohn's and Colitis Knowledge (CCKNOW) questionnaire\].

Interventions

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Interactive educational video

A web-link to an educational video on IBD and pregnancy tailored to emphasize the importance of optimal disease control and medication adherence.

Intervention Type OTHER

Initial in-person counseling with an IBD nurse

This session will emphasize key points from the educational video and the nurse will answer any additional questions the subject may have. The nurse will assess subjects' medication adherence and specifically query any concerns subjects may have regarding specific medications and discuss their intentions to be adherent throughout pregnancy.

Intervention Type BEHAVIORAL

Motivational interviewing

The nurse will be trained in a technique known as motivational interviewing (MI) specifically adapted for optimizing medication adherence during pregnancy.

Intervention Type BEHAVIORAL

Telemedicine-based follow-up

The IBD nurse will arrange follow-up visits with each subject on a monthly basis with additional ad-hoc sessions as needed. The encounter will focus on monitoring disease activity adherence and applying MI communication skills to reinforce and improve the latter.

Intervention Type BEHAVIORAL

Monthly follow-up questionnaires

Web-based short questionnaires, administered monthly, will be used to assess medication adherence \[self-reported using the 5 item Medication Adherence Report Scale (MARS-5)\] and IBD related disease activated \[self-reported using PRO-2 scale for Crohn's Disease related disease activity and 6-Point Mayo Score for Ulcerative Colitis related disease activity\].

Intervention Type OTHER

Comprehensive questionnaires

Web-based detailed questionnaires, administered at enrolment and gestational week 34, will be used to assess medication adherence \[self-reported using the Medication Adherence Report Scale (MARS-5)\], patient trust in physician \[self-reported using the Trust in Physician Scale (TIPS)\], IBD related disease activated \[self-reported using the PRO-2 or 6-Point Mayo Score\], IBD-specific health related quality of life \[self-reported using the Inflammatory Bowel Disease Questionnaire (IBDQ)\], patient satisfaction \[self-reported using the Patient Satisfaction with Healthcare in Inflammatory Bowel Disease (CACHE) questionnaire\]and IBD specific knowledge \[self-reported using the Crohn's and Colitis Knowledge (CCKNOW) questionnaire\].

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Have a confirmed diagnosis of IBD
* Expected to be on an IBD-related medication throughout pregnancy
* In First Trimester of Pregnancy
* Willing to undergo pregnancy counseling with close monitoring
* Able to provide informed consent

Exclusion Criteria

* Patients who are not residing in Ontario of Alberta
* Unconfirmed diagnosis of IBD
* In Second or Third Trimester of Pregnancy
* Uncertainty regarding whether IBD medication will be prescribed throughout pregnancy
* Unwilling to participate
* Inability to provide informed consent
Minimum Eligible Age

18 Years

Eligible Sex

FEMALE

Accepts Healthy Volunteers

No

Sponsors

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Crohn's and Colitis Canada

OTHER

Sponsor Role collaborator

Mount Sinai Hospital, Canada

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Geoffrey C Nguyen, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Mount Sinai Hospital (Toronto, ON, Canada)

Locations

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University of Calgary

Calgary, Alberta, Canada

Site Status NOT_YET_RECRUITING

Mount Sinai Hospital

Toronto, Ontario, Canada

Site Status RECRUITING

Countries

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Canada

Central Contacts

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Geoffrey C Nguyen, MD, PhD

Role: CONTACT

416-586-4800 ext. 2819

Facility Contacts

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Cynthia Seow, MBBS

Role: primary

403) 592-5089

Geoffrey C Nguyen, MD, PhD

Role: primary

416-586-4800 ext. 2819

References

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Other Identifiers

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COACH-IBD

Identifier Type: -

Identifier Source: org_study_id

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