Introduction: Mental health (MH) problems are relatively common in children with sickle cell disease (SCD). Psychological factors are known to directly and indirectly affect pain perception, functional impairment, and other patient-reported health outcomes. Therefore, it is essential to consider these domains in order to provide comprehensive, evidence-based care to youth with SCD. However, it can be challenging for hematology providers without substantive training in MH assessment to recognize symptoms and discuss impressions and treatment recommendations with families. We examined the acceptability and outcomes of a MH screening program in a pediatric SCD clinic.
Methods: During an initial data collection period ("Phase A"), patients' parents (n = 57) were interviewed after hematology clinic visits, providing details about any MH discussions that occurred during the visit and completing Press Ganey® patient satisfaction questions. During a secondary phase ("Phase B"), patients (ages 8-17) and parents (of children ages 5-17) completed the PROMIS Pediatric Profile-25, which assesses 6 domains (fatigue, anxiety, depression, pain interference, mobility, and peer relationships), via iPad in the clinic waiting room. Raw scores were entered into an electronic form, which calculated T scores and generated tailored MH recommendations for hematologists to review before seeing each patient. Parents (n = 32) completed the same post-visit interviews.
Results: At baseline (Phase A), 83% of parents reported that their child's hematologist asked questions about MH during the visit. Across Phases A and B, 97% of parents who reported that their child's hematologist asked about MH reported that they liked that these questions were asked. Of the parents who said MH was not discussed, 27% said that they wished their hematologist would have asked about it.
All parents reported that the 25-item PROMIS Pediatric Profile was an appropriate length and that the screening survey was easy to complete on an iPad. Additionally, 100% of parents reported feeling that it was a good idea to ask the screening questions on an iPad prior to the hematology visit. Most parents (94%) agreed or strongly agreed that the survey questions were appropriate for the care of their child.
In Phase B, hematologists stated that they referred to the MH screening summary to guide part of their patient visit 90% of the time and they described the screening summary as "Very Useful" 92% of the time. Parent reports of the frequency of MH discussions were not significantly different between Phase A (no screening) and Phase B (screening) (84% to 81%; p = .772). However, when asking hematologists whether specific issues were discussed during the visit, significant increases were observed in the rates of discussions about the impact of pain on daily activity (72% to 94%; χ2(1) = 8.87, p = .004), anxiety (4% to 36%; χ2(1) = 17.08, p < .001), and depression (6% to 30%; χ2(1) = 10.57, p = .001). Hematologists reported a nonsignificant increase in the rate of referral for MH services in Phase B (9% to 14%; p = .548).
In regards to patient/parent satisfaction, there was a statistically significant increase in the proportion of "Very Good" ratings on the item asking about satisfaction with the degree to which the physician talked using words the parent could understand (88% to 100%; χ2(1) = 4.27, p = .046), and clinically meaningful but statistically nonsignificant increases on items about satisfaction with the amount of time the physician spent with the patient (88% to 97%; p = .250) and the likelihood of the parent recommending the physician to others (84% to 94%; p = .315).
Conclusions: This study demonstrated the acceptability of MH screening in a pediatric SCD clinic. Although hematologists already discussed MH frequently prior to implementing the screening program, increases in discussions about anxiety, depression, and the functional impact of pain were noted after introducing MH screenings. Rates of referrals for MH treatment rose following implementation of the screening program, but this increase was not statistically significant. Hematologists found a brief MH screening summary to be useful and certain aspects of patient/parent satisfaction showed improvement. Pediatric SCD clinics could integrate MH screenings to increase consideration of the role of psychological factors in patients' presentations and positively affect patient/parent satisfaction.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.
