The Acceptability of Screening for Suicide Risk among Youth in Outpatient Medical Settings: Child and Parent Perspectives

Abstract

Objective:

Psychosocial providers in medical settings are increasingly being asked to identify suicide risk in youth with medical illnesses. This pilot study aimed to determine the acceptability of suicide risk screening among youth with cancer and other serious illnesses and their parents.

Methods:

Youth ages 8-21 years presenting to an outpatient medical setting were screened for suicide risk using a modified version of the Ask Suicide-Screening Questions (ASQ) screening tool. Patient and parent perceptions of acceptability were collected.

Findings:

The sample included 32 patient/parent dyads. The overall positive screen rate was 9.4% (n = 3/32). Most patients (75%; n = 24/32) and parents (84.4%; n = 27/32) reported that medical settings should screen young patients for suicide risk.

Conclusions:

Suicide risk screening was acceptable to most patients and parents in a pediatric clinic.

Implications for Psychosocial Providers:

Medically ill patients are at risk for suicide. Universal suicide risk screening using a validated measure can provide meaningful clinical information to patients’ families and providers and has the potential to save young lives.

OBJECTIVE

Children and adolescents living with potentially life limiting medical conditions are at increased risk for developing mental health concerns.¹ Youth with medical illnesses have been found to be at an increased risk for suicide attempts and completed suicide.^2-5 Further, youth at risk for suicide are also at risk for other self-harming behaviors including non-suicidal self-injury (NSSI),⁶ though research about the prevalence of NSSI in medically ill youth is limited. Suicidal ideations and behaviors can go undetected in medical settings, underscoring the need for universal suicide risk screening.⁷ Research describing the feasibility and acceptability of administering suicide risk screens in pediatric outpatient clinics is sparse. One previous study identified a 9% screen positive rate for suicide risk among youth with medical illness.⁸ In this pilot study, we aimed to examine the acceptability of screening medically ill pediatric outpatients for suicide risk.

METHODS

Outpatients between the ages of 8-21 years old, enrolled in a medical research study at the National Institutes of Health with a diagnosis of pediatric cancer, neurofibromatosis type 1 (NF1), or primary immune deficiencies (PIDs) and their primary caregiver were invited to participate. Additional inclusion criteria included the ability to speak English. Following a larger study in which distress screening was validated,⁸ distress screening became standard of care in the clinic. However, increasing awareness of suicide risks led to a pilot with a separate consent process to see if parents and youth would find suicide risk screening acceptable in addition to the psychosocial standard of distress screening.

Patients who presented with psychotic symptoms and/or cognitive impairment were excluded. Patients were approached by data collectors at their regularly scheduled clinic visit and informed consent/assent was obtained from parents for their participation and their child’s participation. Patients 18 years and older did not require parental consent. Patients completed a distress screening tool⁸ that included a suicide risk screening measure and answered study evaluation questions about their experience being asked about suicide in a medical setting. Specifically, patients and parents were asked, “Has anyone ever asked you about suicide before?” [yes/no] and “Do you think health care providers should ask kids about suicidal thoughts when they are in the clinic?” [yes/no and why/why not]. Parents completed the same suicide risk screening measure about their child’s suicidal thoughts and behaviors to assess corroboration between the two reports of risk. All parents were also asked their opinions about the acceptability of their child being screened for suicide risk in an outpatient medical setting. To identify patients at risk for NSSI as well as suicidal ideation and behavior, verbiage about “hurting oneself” was added to one of the suicide risk screening questions. Any participant who was found to be at risk for suicide or NSSI received a follow-up brief suicide safety assessment to determine a disposition plan. This study was approved by the Institutional Review Board.

Measures

Suicide Risk Screening Questions

The Ask Suicide-Screening Questions (ASQ)⁹ screening tool was imbedded in an electronic psychosocial distress screening questionnaire. The ASQ is a brief, 4-item suicide risk screen developed to identify suicide risk among medical pediatric patients 10-21 years of age. The ASQ was developed using a sample of emergency department patients and has strong psychometric properties with a sensitivity of 96.9% and specificity of 87.6%. In this study, the authors modified the language of the 3^rd ASQ item (i.e. “In the past week, have you been having thoughts about killing yourself?”) to include verbiage about self-harm to detect patients who might also be at risk for NSSI (i.e. “Have you had thoughts about wanting to hurt or kill yourself on purpose in the past week?”). Patients ages 10-21 received all four suicide risk screening items. According to ASQ classification recommendations, a patient screened positive for suicide risk if they endorsed any of the four items and thereafter were asked an additional acuity item about current suicidal ideation. Parents of patients ages 10-21 completed the four suicide risk screening items about their child’s history of suicidal ideation and attempts.

Since the ASQ is not validated below age 10 years, and clinicians were concerned about asking younger children, we only asked 1 question. Patients ages 8-9 years received only the 3^rd suicide risk screening question inquiring about self-harming and suicidal thoughts in the past week. If an 8-9-year-old patient endorsed this item, they were identified as needing need further assessment. Parents of patients ages 8-9 years completed same single suicide risk screening item about their child.

Brief Feedback Questions

After completing the suicide risk screening questions, patients and their parent completed feedback questions about their acceptability of screening for suicide risk in an outpatient medical setting.

RESULTS

Patient and Parent Demographic Information

Thirty-two patient/parent dyads were approached and enrolled in the study. No patients declined to participate. No patients were excluded due to psychotic symptoms and/or cognitive impairment. Twenty-four patients were between the ages of 10-21 and eight were 8-9-year-olds. On average, patients were 13.8 years of age (± 4.8). Most patients identified as male (n = 17/32; 53.1%) and White (n = 23/32; 71.9%). Only 1 participant identified their ethnicity as Hispanic (3.1%). All patients had a medical diagnosis of cancer (n = 20/32; 62.4%), neurofibromatosis type 1 (NF1; n = 6/32; 18.8%), or a rare immunodeficiency (n = 6/32; 18.8%). Most parents were mothers (n = 21/32; 65.6%), with a smaller proportion of fathers (n = 11/32; 34.4%). No age, sex, race or ethnicity demographic information was collected from parents.

Patient and Parent Feedback

Most patients (n = 24/32; 75%) believed that it is acceptable for pediatric patients to be screened for suicide risk in medical settings. While the majority of parents (n = 27/32; 84.4%) reported that “health care providers should ask kids about self-harm/suicide when they are in the clinic”, two did not believe they should be asked, and three parents reported being unsure. No parents had any concerns about their own child being screened for suicide risk at the medical visit. The majority (n = 21/32; 65.6%) of patients reported that they had never been asked about suicide before.

Patient Screening Outcomes and Disposition

For the 10-21-year-old sample, two patients (n = 2/24; 8.3%) screened positive for suicide risk. One patient endorsed having thoughts about wanting to hurt or kill themselves in the past week and the other reported a past suicide attempt. Neither endorsed current thoughts of suicide as assessed by the acuity item, classifying these positive screens as non-acute. A follow-up suicide safety assessment was conducted with both patients.

For the 8-9-year-old sample, three patients (n = 3/8) endorsed having thoughts about killing or hurting themselves in the past week; however, during the follow-up safety assessment, two of the three patients who screened positive reported not understanding the question and were found not to be at risk for suicide.

Of the total sample of positive screens, no referrals for emergency care were required, thus all were non-acute. Each patient was dispositioned home with a recommendation for continued psychosocial support which included professional counseling to facilitate coping and adaptation to illness.

Parent Screening Outcomes

Only 1 of the 5 parents whose child screened positive accurately identified their child’s suicide risk. This parent accurately reported that their child had a previous suicide attempt. One other parent reported that their child had thoughts about hurting or killing themselves in the past week, but the child did not endorse this item, nor did they screen positive for suicide risk. Each of these patients was between the ages of 10-21 years.

DISCUSSION

Psychosocial providers are increasingly being asked to screen for suicide risk in medical settings. While there have been concerns raised about pediatric patients’ experiences with being asked about death and wanting to kill themselves, we found asking questions about suicidal thoughts and behaviors was acceptable to the majority of patients and their parents. In addition, no parents reported concerns about their child being screened for suicide risk. Outpatient medical settings that begin to implement screening programs in compliance with recent Joint Commission recommendations¹⁰ may find their procedures embraced by youth and their families.

The positive screen rate in this pilot sample was similar to previously reported rates among pediatric medical patients.^2,8 For the 8-9-year-olds, only 1 patient who endorsed the self-harm and suicide risk item was found to be at risk for suicide upon follow up, yielding a true positive screen rate of 12.5% (n = 1/8) in this age group and 9.4% (n = 3/32) in the total sample. Only a third of all patients had been previously asked about suicide, suggesting that many youths are not being engaged in dialogues about suicidality in their homes, schools and medical settings. Of those youth who screened positive for suicide risk, most of their parents were not aware of their child’s symptoms, underscoring the importance of early detection by healthcare providers who may be the only trusted adults that inquire about suicidal thinking. Effective screening programs that promote collaborative and supportive dialogue between at risk patients and their parents may provide families with the skills they need to keep their child safe at home.

A limitation of this sub-analysis is the small sample size which may limit our generalizability of both our findings and positive screen rates to other outpatient medical settings. Additionally, not keeping the fidelity of the ASQ items limits our understanding of the developmental variability in 8-9-year-old patients’ comprehension of questions about suicide. This change of wording may have contributed to the false positive screens observed in the 8-9-year-old age group and reminds investigators about the importance of using empirically validated instruments as is for specific age groups. It is also clear, clinicians need to ask directly and specifically about NSSI and suicidal thoughts and behaviors in this age group. No parent had a concern about their own child being screened for distress, including embedded questions about suicide risk, demonstrated by these parents giving consent for their child’s participation in this study. Parents open to suicide risk screening may reflect sample selection bias.

This pilot study suggests that screening medically ill pediatric patients for suicide risk is acceptable to patients and their parents in the outpatient settings. Future studies should assess long-term outcomes associated with screening young patients with medical conditions. Systematic psychosocial distress screening that incorporates validated questions about suicide risk can provide meaningful clinical information and early detection of suicidal thoughts and behaviors with the potential to save young lives.

IMPLICATIONS FOR PSYCHOSOCIAL ONCOLOGY.

• Suicide risk screening can identify young medically ill patients, who, because of their diagnoses, are at increased risk for suicide.

• Psychosocial professionals who work with patients with a medical illness may find that patients are open to speaking about their suicidal thoughts and behaviors and that parents are in support of screening initiatives.

• Standardized and universal screening programs that utilize evidenced-based tools can identify patients at risk who may have otherwise gone undetected, thus potentially saving young lives. The ASQ and accompanying implementation Toolkit (www.nimh.nih.gov/ASQ) are available in the public domain for medical settings who begin to screen their patients for suicide risk. Additionally, evidence-informed clinical pathways for suicide risk screening¹¹ can assist medical settings in adopting feasible methods for identifying and assessing for suicide risk, determining appropriate disposition plans, and re-assessing for suicide risk at future visits.