Michael S Jellinek, MD

Dr. Jellinek is Professor of Psychiatry and of Pediatrics, Harvard Medical School, Boston, and Chief Executive Officer, Community Network, Lahey Health System, Burlington, Massachusetts.

When I started my pediatric residency, I knew my long-term career goal was to be a child and adolescent psychiatrist. I very much appreciated that the pediatric residency built my core identity as a physician, capable of caring medically for children whether in an intensive care unit or in primary care. However, my natural bent was to always include the psychosocial aspects of care and to ask more psychologically oriented questions after the necessary medical information was gathered, for example, when admitting a child to the hospital. When I went to my primary care clinic, I, of course, completed all the usual screening and vital sign measures. Height, weight, urine screening for infection and diabetes, as well as traditional vital signs were done at every visit. In infants and toddlers, developmental issues such as sitting, walking, first words, and toilet training were well noted. However, through working in both an academic and community clinic setting, I was increasingly convinced that there were psychosocial concerns unaddressed and not recognized by any available screening approach.

Most supervising attendings would ask 1 or 2 questions about school or friendships that had a ‘hit or miss’ quality. The director of the clinic was wonderfully intuitive and almost magically sensed which children needed a mini-psychiatric review. However, at the time, there was no training requirement in behavioral pediatrics and even the rotations now instituted could not train someone to select children in a primary care setting without some screening mechanism. Overall, the recognition of emotional problems in pediatrics was highly variable, and the research conducted in the late 1970s indicated that the identification of emotional problems in pediatric primary care was well below expectations set by epidemiological studies.

 I wondered if there could be a short, valid screening questionnaire that could fit into the flow of a busy clinic and identify children in need of further pediatric evaluation and potential mental health referral.

I knew the time pressure and workflow in primary care practice. Any screening process, like a urine dipstick or blood pressure, had to be brief, take no more than 3 or 4 minutes to administer and score, and not clog up the waiting room that had been built to accommodate the typical flow of patients. The screen had to be understandable and readily accepted by parents and teenagers and, if possible, one form had to be applicable to a broad age range. The front desk had enough paper to deal with (electronic records were still 30 years in the future) that there could not be different screening forms by age, gender, or other demographic factors. Using the metaphor of a urine dipstick, the screening had to be simple with one form on one shelf. Given the economics of practice, the screen had to be free to administer and score and potentially be reimbursable like other routine procedures.

1. What issues or problems should a set of screening questions identify?

As a psychiatrist, I was trained to look for sets of symptoms that met criteria for a disorder—a system better suited to adults than to children, given the complexities of development and family considerations. Pediatricians were not familiar with lists of symptoms, with a certain number of symptoms needed for a diagnosis, independent of family or developmental history, and with a diagnostic result of more than one mental health diagnosis. A child diagnosed with major depression from the psychiatric perspective could be 11 or 16 years of age, could have a strong family history of depression suggesting a largely biological etiology, or could be trying to cope with divorcing parents, bullying at school, an alcoholic, abusive father, or a family’s food insecurity. Many pediatricians had no experience with this psychiatric diagnostic approach, were uncomfortable with one or more diagnoses not grounded in an etiology, and/or found it of limited use in communicating with parents or colleagues.

Rather than lists of symptoms, pediatricians start by asking how old is the child and how are they functioning with friends, school, activities, in family life? What is the status of the child’s mood and self-esteem? Given the strong reluctance to use the psychiatric symptom-based approach, to be broadly accepted, psychosocial screening in primary care would have to be based on understandable questions regarding daily functioning. A child’s daily functioning is an expression of their strengths and stressors. A child’s functioning is the common pathway for the influences of genetics, their psychological development, social determinants of health, coping abilities, and resilience. In the context of the epidemiology of childhood psychosocial issues, a screen will find 10%-15% of all 4-16-year-old children “positive,” meaning the pediatricians should include assessing the child further as part of the pediatric visit.

The questionnaire items reflect difficulties in psychosocial functioning with the goal of coming to a score that reflects risk versus non-risk. The first version of the screening tool had 35 questions for parents to rate their child’s problems as occurring “never,” “sometimes,” and “often.” Naming the screening questionnaire, “The Pediatric Symptom Checklist” (PSC) emphasized that a child’s psychosocial functioning was a core and routine part of pediatric healthcare. The PSC was freely available with no charge for the tool, its use, or scoring. More than a decade after initial validation, some colleagues found that groups of questions on the PSC clustered together and could reliably identify risk in 3 different domains: externalizing, internalizing, and attention problems in a shorter 17-item format of the PSC.

Generally, a parent or legal guardian brings the child for the pediatric visit and is typically the person in the best position to assess the child’s functioning. The questionnaire reflects a parents’ perceptions and when considering the psychosocial functioning of a child, a parent is more like the umpire in a baseball game. A ball thrown by the pitcher is defined as a ball or strike by the umpire, and once defined, enters history as what the umpire indicated. Is a child more often alone, having fun, or not listening to rules? There are no objective counts, only a parents’ sense of the situation and that is why “often” scores are so relevant. The major area where parents’ perception is limited is with teenagers, when their thoughts are often private, and a related depressive mood may be hidden. A youth-completed version of the PSC has been developed and other instruments specific to adolescent depression such as the patient health questionnaire (PHQ-9 )are also available.

3. What is the clinical path of a primary care pediatrician if a screen is “positive”?

The goals for the clinician are to assess if the screen is a true positive (similarly to other positive screens, eg, repeating a higher than expected blood pressure), and, if deemed valid, assessing the level of severity and next steps. Questions answered “often” are a good starting point for the pediatrician to solicit the parent’s understanding, and to explore the impact of the behaviors on the child’s and family’s functioning. The next step is to have the pediatrician ask questions about other areas of functioning (school, friends, activities, family, and mood). Depending on these answers, it may be relevant to ask about family violence, any mental health treatment, family history of emotional disorders, and safety concerns (access to guns or dangerous adult medications). Usually, in about 15 minutes, pediatricians get a sense of whether this is a true positive, the general nature of the issue and the severity of impairment or suffering. Next steps might be to offer counseling, schedule a follow-up (“watchful waiting”), or refer to a mental health consultation. Repeat PSCs can be given at the appropriate interval to monitor watchful waiting or get some feedback on the course of treatment post referral. The PSC more than doubled both the recognition and referral rate for psychosocial dysfunction (See Figure).

Since its initial creation, over 35 years of research on the PSC in more than 200 studies has shown its validity and reliability in a wide range of settings,

 demonstrated that it is understood and well-accepted by parents and clinicians,

 is sensitive to the impact of social determinants of health and poverty on mental health,

 can be shortened from a 35- to a 17-item version, can be used in both a parent- and youngster-reported format,

 and that regular use of the PSC is associated with an increase in mental health treatment.

 The PSC is also used in specialty pediatric and mental health clinics, schools, Head Start, state agencies, and online.

In Massachusetts, the PSC was one of a handful of recommended screening questionnaires mandated by a Federal Court as part of a remedy to broaden mental health services for children with Medicaid.

 The PSC has been endorsed by the Massachusetts and California Medicaid programs, the American Academy of Pediatrics, and the National Quality Forum, both for overall screening and for screening adolescents for depression using its internalizing scale.

 The PSC is now included in many if not most US electronic medical record systems (EMR) including two of the most widely used (EPIC and Centricity).

Studies of the PSC in an EMR indicate that 70%-90% of children in large systems can be screened routinely, that pediatricians document their discussion of PSC scores in medical records, generally selecting the higher scoring children for mental health referral. The screen is now a routine feature of the visit and increases referrals for mental health services.

Many questions, however, still remain unanswered: Which children benefit the most from early recognition (those with the highest scores or those with lower levels of risk)? Can the PSC be used to track progress in treatment or highlight the need for more intensive treatment? What is the natural history of an individual’s scores over a decade or more of childhood and adolescence, how should outcomes in functioning be measured, and can the PSC be used more effectively to identify impending adolescent risk taking and suicidal behavior? The PSC is now widely used and is a major bridge between pediatric and mental health care. However, with the burden of mental health problems rising, especially during and post COVID, the bridge should be busier, better resourced, and refined by future research.

1. Gould MS, Wunsch-Hitzig R, Dohrenwend, B. Estimating the prevalence of childhood psychopathology: a critical review. 

2. Pediatric Symptom Checklist. Massachusetts General Hospital Website. 

https://www.massgeneral.org/psychiatry/treatments-and-services/pediatric-symptom-checklist

3. Gardner, W, Murphy, M, Childs, G, et al. (1999). The PSC-17: A brief pediatric symptom checklist with psychosocial problem subscales. A report from PROS and ASPN. 

4. Jellinek M, Murphy J. Screening for psychosocial disorders in pediatric practice. 

5. Murphy JM, Reede J, Jellinek MS, Bishop SJ. Screening for psychosocial dysfunction in inner-city children: further validation of the pediatric symptom checklist. 

6. Jellinek MS, Murphy JM, Little M, Pagano ME, Comer DM, Kelleher KJ. Use of the Pediatric Symptom Checklist to screen for psychosocial problems in pediatric primary care: a national feasibility study

7. Arauz-Boudreau A, Riobueno-Naylor A, Haile H, et al. How an electronic medical record system facilitates and demonstrates effective psychosocial screening in pediatric primary care. 

8. Spencer AE, Baul TD, Sikov J, et al. The relationship between social risks and the mental health of school-age children in primary care. 

9. Pagano ME, Cassidy LJ, Little M, Murphy JM, Jellinek MS. Identifying psychosocial dysfunction in school-age children: the pediatric symptom checklist as a self-report measure. 

10. Gall G, Pagano ME, Desmond MS, Perrin JM, Murphy JM. Utility of psychosocial screening at a school-based health center. 

11. Bergmann P, Lucke C, Nguyen T, Jellinek M, Murphy JM. Identification and utility of a short form of the pediatric symptom checklist-youth self-report (PSC-17-Y). 

12. Hacker KA, Penfold R, Arsenault L, Zhang F, Murphy M, Wissow L. Screening for behavioral health issues in children enrolled in Massachusetts Medicaid. 

13. Hacker KA, Penfold RB, Arsenault LN, Zhang F, Murphy M, Wissow LS. Behavioral health services following implementation of screening in Massachusetts Medicaid children. 

14. Hacker K, Penfold R, Arsenault L, et al. The impact of the Massachusetts behavioral health child screening policy on service utilization. 

15. Official Website of the Commonwealth of Massachusetts. Accessed June 22, 2020. 

https://www.mass.gov/info-details/learn-about-the-approved-masshealth-screening-tools#psc-(pediatric-symptom-checklist)-

16. Savageau JA, Keller D, Willis G, et al. Behavioral health screening among Massachusetts children receiving Medicaid. 

17. Kuhlthau K, Jellinek M, White G, VanCleave J, Simons J, Murphy M. Increases in behavioral health screening in pediatric care for Massachusetts Medicaid patients. 

Articles

A good approach to knowing when a child needs referral for mental health evaluation, the Pediatric Symptom Checklist has evolved over the years to better screen children.

Utilizing the Pediatric Symptom Checklist

I am both reminded of some sadness and delighted to be discussing the role of primary care in the psychosocial care of children with cancer.

	Why sad? One of the most meaningful experiences in my pediatric residency (1971) was the several months caring for Adam, a 2-year-old boy with leukemia. There were limited treatments, severe adverse effects, and little hope. During crisis after crisis, I became close to his family, and I remember to this day standing together around his bed as a Catholic bishop gave Adam his last rites. The family gave me a Rockwell figurine of a pediatrician about to examine an infant, which has been on my desk for nearly 50 years.

	Why delighted? The progress in treating cancer in children has been revolutionary, and the evidence base for providing appropriate psychosocial care has grown as well. The overwhelming majority of children are now cured, although many face some ongoing issues and most need long-term monitoring. During the acute phase of treatment, children with cancer will be treated in specialized centers where hopefully expert mental health clinicians will meet the comprehensive, psychosocial needs of the child and family. The Psychosocial Standards of Care Project for Childhood Cancer’s (PSCPCC) consensus-based “

Standards of Psychosocial Care of Children with Cancer and Their Families

” define a high-quality framework that every child and family coping with cancer deserves.

 After remission or “cure,” many of these children and families will return to their primary care pediatrician. How should the primary care pediatrician provide comprehensive care to a child and family after the acute phase of cancer treatment?

	The primary care pediatrician should appreciate that a child with cancer has undergone a very difficult experience that includes: hearing of their cancer diagnosis; anxiety about treatments (with the potential for posttraumatic stress); developmental-specific fears of death; a serious disruption in every area of functioning; having been part of a highly stressed family; and having varying formulations of what happened and why. These formulations will vary with age and circumstance; with the narrative the child and family have created about their illness (or what the child understands about their illness); be influenced by what was overheard in some office or in rounds, be embellished with guesses and family myths; and be compounded by the guilt almost every parent feels when any harm befalls their child with little regard for the scientific explanation.

Recommended: Mental health services in primary care

	There will be key developmental points-young child to pre-teen, pre-teen to adolescent, adolescent to young adult-where questions that were answered before will reemerge at a more sophisticated level and where the answers will be newly relevant to school, career options, romance, and marriage, as well as to long-term healthcare. Families will have a parallel set of concerns starting with a sense of loss of what was hoped for with a totally healthy child; the realization that certain expectations may be delayed or lost; thoughts that siblings may be at risk

; and concerns that there will be ongoing marital or financial issues.

	Most children and families are impressively resilient and most pediatricians will follow only a few children with cancer in their career. From the pediatrician’s perspective, each child and family is unique and requires an open, curious, and supportive approach.

	Children and families likely will share many of the emotional and medical highs and lows of their experience, and these pediatric outpatient visits will be more intense than most. Although there is no substitute for the joy of remission, cure, and survival, the experience of diagnosis, treatment, and related stress is still part of the child’s and family’s life. During and after these visits, pediatricians should be active, self-reflective listeners. If the visit setting feels safe, they will likely hear some difficult emotions, worries, and speculations.

	One of the strongly recommended Standards is number 3: “Long-term survivors of child and adolescent cancers should receive yearly screening for: a) adverse educational and/or vocational progress, social and relationship difficulties; b) distress, anxiety, and depression; and c) risky health behaviors.” Translating this into practice, the pediatrician might use appropriate screening questionnaires recommended by the American Academy of Pediatrics Bright Futures (Pediatric Symptom Checklist, PHQ 9, CRAFFT),

 and neuropsychological testing if indicated for school or vocational questions. Even more important than these questionnaires is that the pediatrician develop a relationship with the family and child/adolescent. This relationship should develop using slightly longer office visits and with informed, empathic conversations wherein the child/adolescent and parents each feel that they have a safe place to talk.

	Annual visits might include screening questionnaires and inquiring about how the child and family are functioning in the major areas of life-school, friends, activities, family life and emotional state-and, for the parents, add work, financial recovery if relevant, and marital harmony. The pediatrician should be very open and even prompt questions based on knowledge of the family, age of the child, the treatment, and any relevant longer-term consequences. This is a process that knits together visits over time.

	Being a primary care pediatrician for children and families after cancer treatment is not easy work. However, providing care that combines medical knowledge with a long-term relationship is a service to the family as well as professionally and personally most gratifying.

	1. Wiener L, Kazak AE, Noll RB, Paternaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. 

. 2015;62 suppl 5:S419-S424. Available at: 

http://onlinelibrary.wiley.com/doi/10.1002/pbc.25675/full

	2. Yu Y, Cnattingius S, Olsen J, et al. Association of mortality with the death of a sibling in childhood. 

	3. American Academy of Pediatrics. Developmental, Behavioral, Psychosocial, Screening, and Assessment Forms. Bright Futures Tool and Resource Kits. Available at: 

https://brightfutures.aap.org/materials-and-tools/tool-and-resource-kit/Pages/Developmental-Behavioral-Psychosocial-Screening-and-Assessment-Forms.aspx

The progress in treating cancer in children has been revolutionary, and the evidence base for providing long-term psychosocial care for their families has grown as well.

Author | Michael S Jellinek, MD

Articles

Utilizing the Pediatric Symptom Checklist

Primary care following treatment of a child with cancer