Depression Screening in Pediatric Inflammatory Bowel Disease Clinics: Recommendations and a Toolkit for Implementation

Abstract

Objective:

Rates of youth depression are increasing, and approximately 75% of adolescents with depression go unrecognized. Research in pediatric IBD documents increased depression risk, with rates up to 25%, as well as worse adherence and treatment outcomes associated with depressive symptoms. Evidence-based psychological interventions improve the physical and emotional health of these patients, highlighting the importance of detection and treatment. Psychosocial screening has been shown to increase the accurate identification of psychosocial problems and facilitate timely psychosocial intervention. The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation.

Methods:

The psychosocial screening task force group constituted of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN.

Results/Conclusions:

It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.

Depression is a serious and disabling health problem facing adolescents (1,2). By age 18, 1 in 5 adolescents will experience a major depressive episode. Rates of depression are increasing in adolescents, with current rates published by the National Institute of Mental Health estimated at 3.1 million adolescents ages 12 to 17 in the United States, a prevalence of 12.8% of the population in this age range (3). Approximately 75% of adolescents with depression go unrecognized, with only 25% to 33% of depressed adolescents receiving mental health treatment (1,4). Suicide accounts for more deaths than any single medical cause for individuals 10 to 25 years of age in the United States, which is triple the rate of 1950 (5).

As pediatric depression is common but under-detected, routine screening is essential to increase early identification, timely treatment, and symptom monitoring (2). Screening can identify patients in need of referral for psychotherapy and/or pharmacotherapy for depression and can identify youth at risk of suicide. In fact, many youth who attempt suicide had recent contact with a health professional (6). The use of depression screening during these visits may have positively identified these youth, especially as adolescents report willingness to discuss mental health concerns with their doctor (7).

Youth with IBD are at an increasedrisk for behavioral/emotional difficulties compared with healthy children, with depression rates up to 25% (8). In pediatric inflammatory bowel disease (IBD), poorer psychosocial functioning including depression is associated with non-adherence, risk of relapse, worsened disease activity, and higher health care costs (9). Psychotherapy has been shown to be effective in depressed youth with IBD (10,11). Both cognitive-behavioral therapy (CBT) (10,12) and supportive nondirective therapy (SNDT) (13) have been associated with significant symptom improvement in depression for patients with IBD and identified depressive symptoms.

OBJECTIVE

The objective of this article is to establish clinical guidelines for annual depression screening in youth with IBD receiving care in outpatient gastrointestinal (GI) centers and to provide resources to assist with the implementation of depression screening. The intended audience is providers in outpatient GI clinics. The supplemental resources (http://links.lww.com/MPG/B721, http://links.lww.com/MPG/B722) are primarily intended for GI clinics with fewer psychosocial resources and consequently more difficulty implementing the depression screening guidelines, but they can be used by providers to improve screening processes regardless of resources.

GUIDELINE DEVELOPMENT

Recognizing the importance of psychosocial screening in pediatric IBD, a group of psychologists and social workers in the ImproveCareNow (ICN) learning health system developed a psychosocial screening task force to provide recommendations and resources for screening in clinical care. The committee consisted of 6 psychologists and a social worker, each with several years of experience working with children and adolescents with IBD. Five members have implemented psychosocial screening in their IBD clinics, including 1 who has published a manuscript on her screening procedures (14). Another psychologist has implemented psychosocial screening in a cystic fibrosis (CF) clinic, and 1 used quality improvement strategies to implement depression screening in primary care.

Well-developed guidelines for depression screening have been established for primary care (2) and other pediatric chronic illnesses, particularly CF (15). Working groups in these fields conducted systematic reviews, graded the evidence, and developed screening guidelines. We built upon their work by reviewing research in pediatric IBD and developing screening resources. A formal systematic review of screening research was not conducted for the current article, given the comprehensive systematic reviews that were recently conducted in primary care and CF.

For this article, literature searches were conducted via PubMed, PsychINFO, Web of Science, Google Scholar, and reference lists of relevant articles. Searches were limited to the English language and the period of 1995 to 2017. Search terms included combinations of “inflammatory bowel disease,” “Crohn disease,” “ulcerative colitis,” “pediatric,” “depression,” “psychosocial,” “screening,” and “outcomes.” Screening measures used in relevant articles were investigated further. Articles describing their development and psychometric properties were retrieved via searches of reference lists and databases described above.

Committee members met via monthly conference calls and at national conferences to develop screening recommendations and a toolkit. Recommendations are graded on the basis of the University of Oxford’s Center for Evidence-Based Medicine levels of evidence, with 1 to 5 corresponding to the strongest to weakest evidence, respectively (16). They are also rated on the basis of the strength of expert consensus among the task force members that the recommended practice is appropriate (2). All members agreed on the recommendations.

The original toolkit, introduced at an ICN conference in Fall of 2016 (17), used some of the resources developed for depression screening in CF (15) and primary care (18), as well as resources developed by our task force. The toolkit was subsequently accessible to all members of ICN electronically, and we specifically solicited feedback from physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in the ICN network. We addressed feedback provided by dividing the toolkit into modules, adding more information to the “Managing suicidal ideation” module, adding more verbiage to the scripts, giving role-play demonstrations at another ICN conference (19), and revising workflow examples.

DEPRESSION SCREENING TOOLKIT

See Table 1 for an overview of the resources included in the toolkit. See the Supplemental Digital Content (modules 1–4: http://links.lww.com/MPG/B721; modules 5–7: http://links.lww.com/MPG/B722) for toolkit itself.

TABLE 1.

Depression screening recommendations and toolkit resources

Area	Recommendation	Toolkit resources
Screening approach	Screen adolescents with IBD ages 12 and older for depression annually.	Module 1:  • Standard screening approach PowerPoint
Measures and algorithms	Age 12 years: Moods and Feelings Questionnaire, Short Form (MFQ-SF)  Cut-off >6  Age ≥13 years: Patient Health Questionnaire-9 (PHQ-9)  Cut-off ≥11 for ages 13 to 17 years  Cut-off ≥10 for ages 18+	Module 2:  MFQ-SF (age 12 years)  PHQ-9 (ages ≥13 years)  Algorithms
Suicidal ideation and safety planning	Evaluate youth who endorse SI (PHQ-9 item # 9) per clinic protocol or the Columbia Suicide Severity  Rating Scale (C-SSRS)	Module 3:  C-SSRS  Quick Safety Planning Guide  Safety plan template  Additional tips
Educational and referral resources	Provide patients, families, and other clinicians with educational resources as needed	Module 4:  Educational materials  Finding a Mental Health Provider resource  Suggestions for developing a community behavioral health referral network  Information for community behavioral health therapists on treating a child with IBD
Scripts	Scripts can be used as basic templates to be incorporated into the usual language that providers use with patients	Module 5:  Dialogue scripts
Implementing in clinic	Before initiating screening, create site-specific protocols and flow sheets that clearly indicate who is responsible for each task	Module 6:  Sample introductory letters  Recommendations for documenting and billing  Suggestions for implementation  Suggestions for tracking  Sample workflows  Screening readiness checklist
Staff training and support	Implement staff training before initiating screening	Module 7:  Staff training PowerPoint

Module 1: Standard Screening Approach

Recommendation

Screen adolescents with IBD ages 12 and older for depression annually. In the depression screening toolkit, module 1 (Supplemental Digital Content 1, http://links.lww.com/MPG/B721) provides the rationale for annual depression screening for adolescents with IBD.

Rationale/Evidence

Grade of evidence: 2; strength of recommendation: very strong (2). Rates of youth depression and suicide are increasing but often undetected (1,3,4). The American Academy of Pediatrics (AAP) recommends that all adolescents ages 12 and older be screened for depression annually using standardized instruments (2), and adolescents who are at high risk for depression should be screened more frequently. Youth with chronic medical conditions are at increased risk, including those with CF, type 1 diabetes, and pediatric cancer (20), with rates of depression ranging from 25% to 35%. The psychosocial needs in those populations have been addressed by establishing depression screening guidelines consistent with the AAP.

Research in pediatric IBD reliably shows increased depression risk (8,21), with rates up to 25%, as well as poorer adherence and treatment outcomes associated with depressive symptoms (9). Furthermore, there are evidence-based psychological interventions that improve physical and emotional health of these patients (12,13). The current depression screening recommendations for adolescents with IBD were based on this empirical evidence in addition to the AAP clinical guidelines (2) and those published for other pediatric patient populations (15,20).

Module 2: Depression Screening Measures and Algorithms

Recommendations

Measures

Age 12 years: Moods and Feelings Questionnaire, Short Form (MFQ-SF) (22); age ≥13: Patient Health Questionnaire-9 (PHQ-9) (23).

Cut-off Scores

MFQ-SF ≥6; PHQ-9 ≥11 for ages 13–17; PHQ-9 ≥10 for ages ≥18 prompts depression education, referral for evidence-based psychotherapy (eg, CBT), and follow-up at next appointment. PHQ-9 score ≥15 results in additional referral for antidepressant pharmacotherapy (22,23). See Figure 1 for an algorithm for the PHQ-9, and module 2 (Supplemental Digital Content 1, http://links.lww.com/MPG/B721) for algorithms and screening measures.

FIGURE 1.

Patient Health Questionnaire-9 and Columbia Suicide Severity Rating Scale algorithm.

Rationale/Evidence

Grades of evidence: Using a standardized screening tool: 2 (2); using the PHQ-9: 2; MFQ-SF: 3; providing education and follow-up: 5; evidence-based psychotherapy, such as CBT and antidepressant medications: 1 (2,24). Strength of recommendation: very strong.

The MFQ-SF is a 13-item self-report questionnaire designed to identify depressive symptoms in children and adolescents. Respondents indicate how he/she has been feeling or acting in the past 2 weeks on a 3-point scale, ranging from “not true” to “true.” The MFQ-SF was selected because it is free, brief, and easy to administer and score. It has also shown high reliability and validity and demonstrates good sensitivity (80%) and specificity (81%) with adolescents (25), and is one of the few validated measures of depressive symptoms for youth this age.

The PHQ-9 is a 9-item self-report questionnaire developed to screen for the presence and severity of depressive symptoms with 1 item about SI. Respondents indicate how much he/she has been bothered by various problems over the last 2 weeks on a 4-point scale ranging from “not at all” to “nearly every day.” The PHQ-9 was selected because it is free, brief, and easy to administer and score. It is well-validated for use in adults and has demonstrated good sensitivity (89.5%) and specificity (77.5%) for detecting major depression among adolescents (23).

An elevated score on a depression screening measure does not indicate a diagnosis of depression. Rather, it indicates that further assessment should be done, that is, refer the patient to a mental health specialist. Although cut-off scores are useful, clinical judgment should always play a role. Differentiating between short-term emotional response because of disease status and more chronic, long-lasting distress should be assessed. It is completely normal for patients to exhibit emotional concerns during times of flares or after being newly diagnosed, and this would not necessarily warrant a referral for mental health services. Some IBD and depression symptoms overlap (eg, fatigue, poor appetite), so the timing and context of symptoms should be taken into consideration. Ongoing assessment of disease status, consistency of scores on depression screening measures, and discussions related to patients’ quality of life provide the most comprehensive picture of how patients are functioning.

The PHQ-9 replaced the “PHQ-A depression screener,” which was included in the initial version of the depression screening toolkit. The PHQ-A is described as a PHQ-9 modified for adolescents ages 11 to 17. Upon extensive review and consultation (26,27), we were unable to identify published findings describing the development and validation of the original, comprehensive PHQ-A (27) into a screening measure unique to depression, for adolescents ages 11 to 17, with items scored from 0 to 3. Thus, we replaced the “PHQ-A depression screener” with the PHQ-9.

Module 3: Managing Suicidal Ideation

Recommendation

Evaluate youth who endorse SI (eg, PHQ-9 item # 9) further per clinic protocol or via a suicide screener, such as the Columbia Suicide Severity Rating Scale (C-SSRS) (28). See module 3 (Supplemental Digital Content 1, http://links.lww.com/MPG/B721) for the C-SSRS, algorithms for follow-up of C-SSRS responses, guidelines on safety planning, a safety planning template, and additional online training (if desired).

Rationale/Evidence

Grade of evidence: 2; strength of recommendation: very strong (2). The C-SSRS is a free, short, empirically supported screener of SI and behavior that has been used in a wide range of contexts, including clinical trials, where it is recommended by the FDA (29), as well as by first responders, the military, schools, and behavioral health (30). No mental health training is required to administer the C-SSRS (30), and short trainings on C-SSRS administration are available (31), which are listed in the toolkit. C-SSRS ratings significantly predict suicide attempts (odds ratio = 1.45) (28).

A common question concerns the possibility of causing SI or behavior by asking about it. This is the first topic in this module, and a review article investigating this question (32) is included. In this review of 13 studies, none found a significant increase in SI after assessing it. In fact, 5 studies reported significantly decreased distress, suggesting that some people may find relief in discussing these thoughts (32).

Finally, challenging situations that may arise are addressed in this module. These include discussing with the patient that confidentiality must be broken to inform the caregiver about the SI, working with caregivers who may downplay the patient’s ideation (eg, “She’s just trying to get attention”), procedures for getting the patient to the Emergency Department (if needed), and working with reluctant families.

Module 4: Educational Resources

Recommendation

Provide patients, families, and other clinicians with educational resources as needed. An additional aim of our tool kit is to give GI providers resources to assist patients, families, and other clinicians (module 4, Supplemental Digital Content 1, http://links.lww.com/MPG/B721).

Rationale/Evidence

Grade of evidence: 5; strength of recommendation: very strong. In the toolkit, IBD-specific educational materials are included for providers to initiate and build relationships with community mental health clinicians who might ultimately assume care for youth with positive depressive screens. Establishing these relationships are essential to ensure timely and effective access to services in the community (33). In addition, a templated referral letter is included to communicate with community mental health clinicians, outlining the disease-specific educational materials available with online links.

Finally, resources for parents are included in the toolkit: 1 is a resource for locating a mental health provider in the community. The other is a handout that provides information on supporting teens dealing with stress and depression.

Module 5: Scripts

Recommendation

Scripts can be used as basic templates to be incorporated into the usual language that providers use with patients. Scripts are available that offer sample language during the screening process for communication with patients and families and can be adapted to fit a clinician’s needs (module 5, Supplemental Digital Content 2, http://links.lww.com/MPG/B722).

Rationale/Evidence

Grade of evidence: 5; strength of recommendation: very strong (22). Scripts may be useful for staff new to depression screening or anyone interested in new language to use throughout the screening process. Increased comfort with the language and processes involved with depression screening will likely assist in its implementation. Sample language is provided for introducing screening, discussing the results of the PHQ-9 or MFQ, administering the C-SSRS, and discharge planning. Scripts are also included for communicating with a patient regarding safety planning, informing caregivers about a patient’s SI, and supporting the patient and family in going to the emergency room.

Module 6: Implementation

Recommendation

Before initiating screening, create site-specific protocols and flow sheets that clearly indicate who is responsible for each task. See module 6 (Supplemental Digital Content 2, http://links.lww.com/MPG/B722) for several resources to assist with implementation, including a checklist to determine readiness to begin screening based on completion of essential tasks and sample workflows that demonstrate how screening can be adapted to site differences. A sample introductory letter for parents to be given at registration that explains that all patients seen by the clinic will receive depression screening in an effort to offer comprehensive care is also provided.

Rationale/Evidence

Grade of evidence: 5; strength of recommendation: very strong. Implementation of annual depression screening for pediatric patients with IBD will be more successful if clinic staffing, administration, scoring, and disposition plans are made in advance (18). In addition, sites newly adopting screening may consider starting with a subset of the patient population, such as a specific age group, patients seen by a specific physician, or a particular clinic day. For example, starting with young adults (ages 18 and older) will facilitate familiarity with the PHQ-9, allow for troubleshooting around the screening process, and illuminate site-specific challenges before screening of the entire patient population begins. For sites with multiple providers, starting to screen patients seen by providers with the most interest in psychosocial screening may facilitate buy-in and adoption. Implementation of screening necessitates planning and familiarity with protocols for addressing positive screens, referrals for treatment, and managing SI when endorsed. Taking the time to garner institutional support and to develop feasible workflows before beginning screening will decrease the likelihood that problems dampen enthusiasm of providers, staff, and families. Quality improvement (QI) methods are ideal for addressing challenges to implementation, especially when starting on a smaller scale. In fact, many busy clinics have successfully implemented depression screening with varying levels of resources, often using QI methodology to do so (33,34).

Module 7: Staff Training

Recommendation

Implement staff training before initiating screening. The current toolkit includes trainings tailored to health care professionals who may be involved in screening patients with IBD for depression (module 7, Supplemental Digital Content 2, http://links.lww.com/MPG/B722).

Rationale/Evidence

Grade of evidence: 5; strength of recommendation: very strong. Previous literature has underscored the importance of quality staff training. Specifically, the combination of seminar and role plays with actors as patients has been shown to significantly improve pediatrician’s ability to screen for adolescent depression (35). The use of role plays allows providers to practice the skills necessary for appropriate depression screening, which resulted in providers who felt more knowledgeable and confident. The provision of role-specific training is important to obtain buy-in and to avoid redundancy (36). There are multiple but highly related tasks required for successful screening implementation, thus it is critical to involve the entire team in training so that each individual is aware of the importance of screening, as well as their role in the process.

DISCUSSION

Annual depression screening should be a routine part of IBD care. The recommendations in these guidelines for youth with IBD are similar to, if not the same as, those recommended by the AAP and other pediatric chronic conditions. The AAP and a CF working group conducted systematic reviews and graded the evidence for depression screening (2,15,24). The evidence for conducting depression screening and treating it with evidence-based psychotherapy, such as CBT and anti-depressant medication reaches the highest levels of evidence per the Oxford Center for Evidence-based Medicine (CEBM) standards. Many of the other recommendations made by the AAP, CF working group, and our IBD task force were supported by strong agreement among experts, but have not been (nor even could be) subject to rigorous empirical testing, such as the randomized controlled trials required for the CEBM levels of evidence (2). Even if RCTs cannot be conducted, additional research investigating methods of implementing screening and addressing issues related to disposition and follow-up is needed.

Implementing depression screening in a busy clinic may seem like a daunting task and is likely to require changes in workflow and procedures. Nonetheless, optimal IBD care treats all aspects of health, and identifying depression symptoms that often go undetected and can affect IBD outcomes benefits patients, families, and providers.