Developing a Clinical Pathway for Somatic Symptom and Related Disorders in Pediatric Hospital Settings
Somatic symptom and related disorders (SSRDs) are commonly encountered in pediatric hospital settings. There is, however, a lack of standardization of care across institutions for youth with these disorders. These patients are diagnostically and psychosocially complex, posing significant challenges for medical and behavioral health care providers. SSRDs are associated with significant health care use, cost to families and hospitals, and risk for iatrogenic interventions and missed diagnoses. With sponsorship from the American Academy of Child and Adolescent Psychiatry and input from multidisciplinary stakeholders, we describe the first attempt to develop a clinical pathway and standardize the care of patients with SSRDs in pediatric hospital settings by a working group of pediatric consultation-liaison psychiatrists from multiple institutions across North America. The authors of the SSRD clinical pathway outline 5 key steps from admission to discharge and include practical, evidence-informed approaches to the assessment and management of children and adolescents who are medically hospitalized with SSRDs.
Somatization is the process of experiencing emotions as physical symptoms (eg, headaches, stomachaches, nausea, and fatigue) and is a common experience of children and adolescents.1 When these symptoms are persistent and markedly interfere with functioning, the group of conditions known as somatic symptom and related disorders (SSRDs) should be considered. SSRDs are characterized by impaired physical symptoms that are influenced by psychological factors, although they may co-occur with a medical condition, especially when symptoms are severe enough to warrant hospitalization.2,3 SSRDs in youth are associated with disruptions to education, peer relationships, recreation, and family functioning and can negatively affect their developmental trajectory.2,4 Families affected by SSRDs tend to distrust emotional or psychological explanations for the symptoms, fear that a medical condition has been missed, and perceive stigma about a mental health diagnosis.5 Often this results in late or declined mental health treatment, medication overreliance, and family frustration.6,7
Primary and specialty pediatric care services, such as pediatric hospital medicine, neurology, and gastroenterology, are often extensively used by children with SSRDs.3,8–11 Children with SSRDs account for 10% to 15% of medical visits in primary care,12,13 and somatization is the second leading reason for consultation requests received by child and adolescent psychiatrists in pediatric hospitals.14 Health care professionals often feel unprepared to care for these patients because of insufficient training in the diagnostic and management processes,15 lack of common terminology for the illness phenomenon, absence of standard treatment guidelines, and time-consuming nature of their care.16 Literature reveals that the management of youth with SSRDs is associated with a high level of provider and family frustration and poor treatment outcomes despite the often extensive level of resources used.12,17,18 Other related challenges include a heightened risk of iatrogenic injury, prolonged medical hospitalization, diagnostic errors (involving both medical and mental health diagnoses), increased morbidity, high health care costs, and high levels of economic and emotional burden to families.
Given these challenges, and the lack of standardization of care in the pediatric SSRD population, there is a clear need to develop evidence-informed, integrated, SSRD care models through the use of a clinical pathway (CP). CPs bridge the gap between research findings and daily practice19 by bringing available evidence to health care professionals and outlining essential steps in patient care that can be adapted to the local context.19–24 With CPs, providers aim to reduce practice variations and improve the efficiency and effectiveness of health care.25 Multiple studies reveal that CPs improve clinical outcomes26–28 while decreasing length of stay and hospital costs.29 The use of CPs is increasing worldwide, and they are commonly used in North America for medical conditions such as asthma and diabetes.25–28 There is, however, a lack of published CPs for the management of psychiatric disorders in pediatric hospital settings.
Waynik et al30 describe a model for developing and implementing CPs (Fig 1). Factors that are used to predict the successful development and implementation of CPs include high disease prevalence and high practice variability,25 which are both prominent features of pediatric SSRDs.14–16 Although there is some evidence about psychotherapeutic interventions when addressing SSRD in primary care,7 there are limited published data on best practices for SSRD management in pediatric hospitals. In the current article, we describe the process and content of a CP developed by an expert group of pediatric consultation-liaison psychiatrists in the United States and Canada to guide the care of patients with SSRDs in pediatric hospital settings.
The SSRD working group used a standardized model for creating a CP.30 Each of the steps is described below:
Identifying the need for a CP: As described previously, SSRDs are prevalent in the pediatric population, have high medical and psychiatric comorbidities, and result in considerable health care use, with providers having little guidance in or coordination of the care of patients with SSRDs in pediatric hospitals. A CP was adopted to standardize fundamental elements of care and facilitate best practices.
Assembling a team of experts: The SSRD working group consisted of 12 pediatric consultation-liaison psychiatrists who have an established expertise, clinical experience, and interest in SSRD evaluation and management in pediatric hospitals. These psychiatrists practice in a wide variety of settings and contexts from 8 US states and 3 Canadian provinces. A pediatrician with expertise in CP development provided guidance and feedback during the process.
Compiling and reviewing existing research: The literature on SSRD is evolving. The current evidence base was reviewed by working group members and informed the pathway development. Local SSRD pathways and protocols from 7 institutions of the participating working group members were reviewed to identify common and essential elements and themes as well as important lessons learned from developing and implementing local pathways, which also informed the current CP.
Developing the CP:
a. Initial draft: The SSRD working group held monthly teleconference calls for 2 years starting in April 2016. After the first few months of review and discussion of literature as well as lessons learned from developing and implementing local pathways, key steps in the SSRD pathway were outlined. Achieving interdisciplinary consensus on SSRD evaluation, diagnosis, symptom management, and discharge planning were considered to be important aspects of the pathway. The vital role of communicating with families and ensuring linkages to outpatient care providers was highlighted.
b. American Academy of Child and Adolescent Psychiatry (AACAP) Abramson Fund grant: A full weekend workshop for the Pathways in Clinical Care (PaCC) working group, consisting of the SSRD working group and 2 other working groups, was sponsored by the AACAP Abramson Fund grant. The initial draft of the CP generated by the SSRD working group was shared with the whole PaCC working group for feedback. The pediatrician with CP expertise provided substantive input regarding the development, content, language, and visual representation of the information. Reflections and responses received during this workshop were incorporated into a second draft of the SSRD CP.
c. Stakeholder feedback: Stakeholder feedback was obtained from 6 North American pediatric clinical institutions. These stakeholders came from 12 disciplines involved in the diagnosis and treatment of patients with SSRDs in the pediatric hospital setting. This included providers from pediatric hospital medicine, adolescent medicine, psychology, child psychiatry, social work, physical and occupational therapy, case management, neurology, surgery, nursing, and nursing education. The stakeholders reviewed the second draft of CP materials (flowchart and text documents) and provided specific feedback on each section of the pathway. Written transcripts of the stakeholder feedback statements were systematically analyzed for emerging themes (Table 1). Through a consensus working group process, each feedback element was reviewed, and modifications were made to further strengthen the structure and content of the pathway.
d. Final draft: The SSRD CP was presented at a member services forum at the AACAP 2017 annual conference in Washington, District of Columbia. The feedback generated from the forum participants, composing a diverse national audience, was incorporated into the final version of the SSRD CP.
The CP development resulted in the creation of 4 components of an SSRD CP, which will be described in further detail below:
an introduction for the suite of CP documents;
a flowchart to serve as a graphic illustration of the steps in the approach to caring for youth who are hospitalized with SSRDs;
a detailed text guide including a narrative explanation of each step outlined in the CP with supporting literature; and
sample scripts and handouts to standardize and aide with communication within the steps of the CP.
In the introductory document, the authors describe the need for a hospital-based SSRD CP; outline the potential clinical, financial, and administrative benefits of addressing the challenges faced when caring for this patient population; and provide an overview of the proposed CP (see SSRD Pathway: Introduction to the CP for SSRDs in the Supplemental Information). The information presented in the introductory document is relevant to both health care providers and hospital administrators when addressing the whole range of hospital stakeholders involved in facilitating SSRD CP adoption and implementation at the local level.
The flowchart serves as a visual reference in which the 5 critical steps of the SSRD CP from admission to discharge, including screening, evaluation, and management, are highlighted (Fig 2).
CP Text Guide
In the comprehensive companion text document for the SSRD CP, the authors provide specific, detailed information for each step of the pathway; this serves as an explanatory guide for the graphic flowchart (see SSRDs CP Text: Care of Pediatric Patients With SSRDs in Inpatient Medical and Surgical Units in the Supplemental Information). The SSRD CP text guide includes pertinent background information on somatization and SSRD in youth; the authors describe how interdisciplinary inpatient pediatric care teams can implement each step and provide recommendations for screening, integrated medical and psychiatric evaluation, and management. The guide includes the existing literature that informed each step of the pathway.
CP Scripts and Handouts
The scripts and handouts developed as part of the SSRD CP are summarized in Table 2. These materials are used to guide the interdisciplinary providers on how to present the SSRD CP approach to patients and their families, including how to introduce psychiatry and other consultants as part of the interdisciplinary team, describe the evaluation process to the patient and family, and share input from interdisciplinary findings with families. In the handouts, the authors summarize patient- and/or family-centered facts about SSRDs and provide consistent language to anchor providers in the communication of aspects of SSRD care. Because these patients rarely present first to behavioral health providers, a goal in using these scripts is to help increase comfort and skill among health care providers from various disciplines in managing SSRDs and to mitigate the challenges experienced by families in receiving and accepting the SSRD diagnoses.
This is the first CP developed by a group of expert child psychiatrists, with pediatric stakeholder input, from multiple institutions in North America to standardize pediatric SSRD care in the inpatient hospital setting. The efforts of the working group resulted in a pathway for SSRDs that meets the operational definition of CPs on the basis of the following 4 criteria: (1) it is a structured multidisciplinary plan of care; (2) it is used to translate guidelines or evidence into local processes; (3) it includes details of the steps in a course of treatment or care in a plan, pathway, algorithm, guideline, or protocol; and (4) it is developed with the aim to standardize care for a specific population.25
Key Themes in the SSRD CP
The first and second steps of the SSRD CP emphasize the early identification of somatization with a process of simultaneous physical and mental health diagnostic evaluations. Studies reveal that early mental health consultation reduces the length of admissions for pediatric patients who are medically ill with comorbid mental health diagnoses, including patients with SSRDs.31 It is critical to ensure that patients and families understand the interdisciplinary nature of evaluation and the multifactorial nature of SSRDs to normalize the involvement of mental health professionals.6,11,32 Delayed mental health involvement results in patients and families perceiving that their care is being “handed off” to mental health and further stigmatizes the condition.10 The presence of inconsistent physical symptoms and/or psychosocial stressors, although raising the concern for possible somatization, is insufficient to make a diagnosis of SSRD. The importance of an interdisciplinary evaluation that includes a comprehensive and judicious medical workup is also emphasized to ensure that existing medical conditions are not overlooked in the context of the concerns for somatization and SSRD evaluation. With the use of the SSRD CP, patient and family expectations are set early in the course of the inpatient hospitalization to align them with the role of the interdisciplinary care team. These expectations include interdisciplinary evaluation and management in which symptom reduction (as feasible) is targeted through the use of behavioral interventions, rehabilitation therapies, and parent training and establishing an interdisciplinary outpatient treatment plan.6,33
For the third and fourth steps of the SSRD CP, it is recommended that an interdisciplinary provider meeting and an informing family meeting be held once the diagnostic assessment is completed. SSRD care is often characterized by disjointed evaluations and mixed message delivery to patients and families.7 Ensuring effective, interdisciplinary communication with the family has been found to be associated with improved treatment adherence, participation in outpatient follow-up, and improved patient outcomes.32 Team meetings have been shown to be associated with high patient and caregiver satisfaction in the pediatric inpatient medical setting, particularly for patients with comorbid medical and mental health diagnoses.34 A coordinated approach by interdisciplinary providers reaffirms the multifactorial nature of SSRDs, facilitates a consistent communication strategy, and reduces the likelihood of misunderstandings or miscommunication about the diagnoses. In the informing meeting, families are provided with a shared conceptual framework for somatic symptom development. Providers are allotted an opportunity to educate families about SSRDs and review the diagnostic formulation by using language that is consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). Involving primary care and other key outpatient providers in the informing meeting allows for a natural transition point in the SSRD care from completing the diagnostic evaluation to focusing on multidisciplinary management and disposition planning, including outpatient care.7,32 Using terminology that is consistent, understandable, and based on the DSM-5 and providing explanation regarding the biopsychosocial model is critical to effective symptom evaluation and management.7 Therefore, practical scripts are included in the CP to guide clinicians at all levels of training to effectively discuss the conceptual framework of symptom development, diagnosis, and treatment regarding pediatric SSRDs. The scripts foster the operationalization of the CP by including tools and resources for providers to enact the core steps of the pathway.
Early management and disposition planning are the focus in the fifth and final step of the pathway. The treatment of SSRDs can be initiated within the hospital setting with the goal of improving functionality and successfully transitioning to outpatient care.35 Children with more profound and pervasive functional impairment, with or without other comorbid conditions, may need more intensive treatments, including admission to medical-psychiatric programs or physical rehabilitation units.6 Disposition planning is multidisciplinary with a focus on promoting active engagement with the primary care provider (PCP), establishing follow-up care with outpatient mental health providers who are familiar with SSRDs, ongoing monitoring by subspecialty pediatric providers as indicated, using continued outpatient rehabilitative services if needed, and providing guidance to families and schools.10,32,33,35,36 Scheduled and frequent follow-up visits with a PCP are important to maintain the alliance and investment in treatment and provide ongoing medical education and reassurance.33
Limitations and Future Directions
The SSRD CP working group primarily consisted of experts in child and adolescent consultation-liaison psychiatry. Providers in other disciplines, including psychology, were involved in the stakeholder feedback but were not part of the primary working group. Interdisciplinary and patient and/or family involvement in the operationalization of the SSRD CP and care expansion to outpatient settings will be helpful in capturing a broader perspective on SSRD care.
Compared with other clinical diagnoses in child and adolescent psychiatry, such as depression and anxiety, as well as suicide, there is a relative dearth of literature on SSRD evaluation and management, particularly in inpatient pediatric settings. Available evidence supported the development of this pathway; however, randomized controlled trials for the evaluation and treatment of SSRDs are still lacking. The working group was faced with a diversity of practices, expectations, systems, and resources that currently exists in SSRD care throughout the represented geography. This was obviated by sharing current practices and resources, developing a consensus set of principles and fundamental practices, and accounting for the known limitations in mental health consultation and access that often exist in many parts of North America. Because the SSRD working group relied on expert consensus and experience to inform the CP and resource development, there is potential for the introduction of bias in the CP development by relying more on the members of the group with greater experience in SSRD care. For this initial effort in the standardization of care, the consensus was developed by using discussions and verbal communications among the working group members; no formal method of consensus gathering, such as the Delphi procedure, was used.
Specific recommendations for inpatient assessment and the management of SSRDs have been made in this CP. We recognize that the pathway implementation may be influenced by resource availability in local hospital settings, including a psychiatry consultation-liaison service. The diversity of the practice locations of the working group was intended to mitigate this limitation, and consideration of resource limitations was a guiding principle in this CP development. The SSRD CP is a flexible guide that allows for clinicians to adapt it to local resources and realities while preserving the core features, central themes, and principles of the CP.
With significant changes in the diagnostic language and criteria of SSRDs within the DSM-5, as well as the overlap of a variety of other clinical and nonclinical terms commonly used when describing symptoms and presentations of SSRDs, the working group spent a considerable amount of time clarifying, reviewing, and discussing the use of language and terms. Ultimately, the decision was made to focus on DSM-5 language for consistency and clarity given the audience using the SSRD CP. Local practices and language that is familiar and well accepted by patients, families, and providers can be accommodated within the CP so long as they generally adhere to the principles and current evidence and the DSM-5. Although the scope of the SSRD CP was to be focused on the inpatient pediatric setting, the CP and its associated resources contain significant language prompts to engage and communicate with providers within the outpatient setting so as to allow for a smooth transition of care and cross-talk between the 2 systems. Because these patients often present to emergency departments, future efforts to address SSRD care in this setting will also be important.
Finally, the implementation and efficacy of this SSRD CP has not yet been established empirically. Future directions for the CP implementation point toward developing partnerships with pediatric hospitalists and subspecialists, hospital administrators, nurses, consultation-liaison psychiatrists, psychologists, and support staff. It is important to identify local champions to lead implementation by providing education and support for the clinical application of the pathway. Research studies on the feasibility and outcomes of the SSRD CP are needed to investigate if the SSRD CP has the potential to be used to standardize pediatric SSRD care in hospital settings across medical institutions in North America. The members of the North American PaCC SSRD working group plan to implement the SSRD CP in individual institutions and empirically study the implementation process and anticipated outcomes, including improvements in clinical care, cost savings, and the impact of early interdisciplinary collaboration.
This CP is the first attempt to develop a standardized approach to SSRD care across multiple pediatric institutions in North America. Given the existing gap in guidelines for the care of these patients in many hospitals, this CP will be a helpful resource for health care providers of various disciplines in the assessment and management of youth who are medically hospitalized with SSRD.
The PaCC working group of the AACAP Physically Ill Child Committee assisted in the conceptualization and design of the study and provided feedback on the CP. The PaCC working group consists of all named authors as well as the following members: Khalid Afzal, MD; Sonali Bora, MD; Sophia Hrycko, MD; Lisa Horowitz, PhD, MPH; Willough Jenkins, MD; Kyle Johnson, MD; Julia Kearney, MD; Elizabeth Kowal, MD; Brian Kurtz, MD; Roberto Ortiz-Aguayo, MD; and Gabrielle Silver, MD. We are grateful to all the stakeholders who provided feedback on the CP; Ilana Waynik, MD, for providing guidance in CP development; Hana Saab, PhD, for helping analyze the stakeholder feedback; and Quentin Bernhard, Kathleen Samiy, and Patricia Jutz for their help with formatting the pathway flowchart and text documents.
FINANCIAL DISCLOSURE: Dr Ibeziako receives grant support from the National Heart, Lung, Blood Institute; the other authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Funded by the American Academy of Child and Adolescent Psychiatry Abramson Fund.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- ↵American Academy of Child and Adolescent Psychiatry. Physical symptoms of emotional distress: somatic symptom and related disorders. 2018. Available at: https://www.aacap.org/AACAP/Families_and_Youth/Facts_for_Families/FFF-Guide/Physical_Symptoms_of_Emotional_Distress-Somatic_Symptoms_and_Related_Disorders.aspx. Accessed August 27, 2018
- ↵American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Publishing; 2013
- Bujoreanu S,
- Randall E,
- Thomson K,
- Ibeziako P
- Malas N,
- Ortiz-Aguayo R,
- Giles L,
- Ibeziako P
- Lindley KJ,
- Glaser D,
- Milla PJ
- Rask CU,
- Ørnbøl E,
- Fink PK,
- Skovgaard AM
- Gieteling MJ,
- Lisman-van Leeuwen Y,
- van der Wouden JC,
- Schellevis FG,
- Berger MY
- Shaw RJ,
- Pao M,
- Holland JE,
- DeMaso DR
- Ring A,
- Dowrick C,
- Humphris G,
- Salmon P
- Rotter T,
- Plishka C,
- Hansia MR,
- et al
- Hakkennes S,
- Dodd K
- Kitson A
- Lawal AK,
- Rotter T,
- Kinsman L,
- et al
- Casas A,
- Troosters T,
- Garcia-Aymerich J,
- et al
- Rotter T,
- Kinsman L,
- James E,
- et al
- Kaiser SV,
- Rodean J,
- Bekmezian A,
- et al
- Waynik I,
- Sekaran A
- Bujoreanu S,
- White MT,
- Gerber B,
- Ibeziako P
- Burton C,
- Weller D,
- Marsden W,
- Worth A,
- Sharpe M
- Kitts RL,
- Gallagher K,
- Ibeziako P,
- Bujoreanu S,
- Garcia G,
- Demaso DR
- Ibeziako P,
- Rohan JM,
- Bujoreanu S,
- Choi C,
- Hanrahan M,
- Freizinger M
- Kroenke K
- Copyright © 2019 by the American Academy of Pediatrics