Sickle Cell Disease (SCD) is associated with neurocognitive impairment, and routine cognitive and academic screening is recommended. Traditional reports following testing are often not health literate, limiting the usefulness of evaluations. This study investigated whether a small “passport” summarizing results and recommendations would be helpful in increasing understanding of results and follow-through on recommendations. Participants (N = 46) were randomized to two groups. Following evaluations, the control group received a report in the mail while the experimental group received the report with a printed “passport.” Seven to fourteen weeks after receiving results, a follow-up phone call was conducted to assess recall. Results did not support the effectiveness of a neurocognitive passport for improving understanding or recall of neurocognitive testing results, nor did this approach demonstrate improvement in follow-through on recommendations. However, results did suggest variability in caregiver understanding and recall, suggesting that ongoing efforts to improve outcomes in these domains is important. Follow-up studies should look at other novel methods to achieve this goal.
AcquazzinoMAMillerMMyrvikM, et al. (2017) Attention deficit hyperactivity disorder in children with sickle cell disease referred for an evaluation. Journal of Pediatric Hematology39(5): 350–354.
2.
AlbertsNMBadawySMHodgesJ, et al. (2020) Development of the incharge health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: user-centered design approach. JMIR mHealth and uHealth8(5): e14884.
3.
BaumKTvon ThomsenCElamM, et al. (2018) Communication is key: the utility of a revised neuropsychological report format. The Clinical Neuropsychologist32(3): 345–367.
4.
BillsSESchatzJHardySJ, et al. (2020) Social-environmental factors and cognitive and behavioral functioning in pediatric sickle cell disease. Child Neuropsychology26(1): 83–99.
5.
BodinDBeetarJTYeatesKO, et al. (2007) A Survey of Parent Satisfaction with Pediatric Neuropsychological Evaluations. The Clinical Neuropsychologist21(6): 884–898.
6.
CasalettoKBHeatonRK (2017) Neuropsychological assessment: past and future. Journal of the International Neuropsychological Society23(9–10): 778–790.
7.
CheungLLTWakefieldCEEllisSJ, et al. (2014) Neuropsychology reports for childhood brain tumor survivors: implementation of recommendations at home and school. Pediatric Blood and Cancer61(6): 1080–1087.
CrearySAdanIStanekJ, et al. (2017) Sickle cell trait knowledge and health literacy in caregivers who receive in-person sickle cell trait education. Molecular Genetics & Genomic Medicine5(6): 692–699.
10.
DavisDWJonesVFLogsdonMC, et al. (2013) Health promotion in pediatric primary care: importance of health literacy and communication practices. Clinical Pediatrics52(12): 1127–1134.
11.
DeBaunMRJordanLCKingAA, et al. (2020) American society of hematology 2020 guidelines for sickle cell disease: prevention, diagnosis, and treatment of cerebrovascular disease in children and adults. Blood Advances4(8): 1554–1588.
12.
EliasJZimakESherwoodA, et al. (2021) Do parents implement pediatric neuropsychological report recommendations?The Clinical Neuropsychologist35(6): 1–17.
13.
FarmerJEBrazealTJ (1998) Parent perceptions about the process and outcomes of child neuropsychological assessment. Applied Neuropsychology5: 194–201.
14.
FeinbergEStranskyMLAugustynM, et al. (2023) Effect of family navigation on participation in part C early intervention. Academic Pediatrics23(5): 904–912.
15.
FisherELZimakESherwoodAR, et al. (2022) Outcomes of pediatric neuropsychological services: a systematic review. The Clinical Neuropsychologist36(6): 1265–1289.
16.
GioiaGAIsquithPKGuySC, et al. (2015) BRIEF-2: Behavior Rating Inventory of Executive Function: Professional Manual. Psychological Assessment Resources.
17.
GodoyLHodgkinsonSRobertsonHA, et al. (2019) Increasing mental health engagement from primary care: the potential role of family navigation. Pediatrics143(4): e20182418.
18.
GrutersAARamakersIHVerheyFR, et al. (2022) A scoping review of communicating neuropsychological test results to patients and family members. Neuropsychology Review32(2): 294–315.
19.
GuilmetteTJSweetJJHebbenN, et al. (2020) American academy of clinical neuropsychology consensus conference statement on uniform labeling of performance test scores. The Clinical Neuropsychologist34(3): 437–453.
20.
HankinsJSBrambillaDPotterMB, et al. (2023) A multilevel mHealth intervention boosts adherence to hydroxyurea in individuals with sickle cell disease. Blood Advances7(23): 7190–7201.
21.
JonassaintCRShahNJonassaintJ, et al. (2015) Usability and Feasibility of an mHealth Intervention for monitoring and managing pain symptoms in sickle cell disease: the sickle cell disease mobile application to record symptoms via technology (SMART). Hemoglobin39(3): 162–168.
22.
KarstJSMillerMHeffelfingerAK, et al. (2023) Referral outcomes from a neurocognitive screening program for pediatric sickle cell disease. Clinical Practice in Pediatric Psychology11(1): 39–51.
23.
KavanaghPLSprinzPGVinciSR, et al. (2011) Management of children with sickle cell disease: a comprehensive review of the literature. Pediatrics128(6): e1552–e1574.
24.
KorkmanMKirkUKempS (2014) NEPSY II: Clinical and Interpretive Manual. San Antonio, TX: Harcourt Assessment. PsychCorp.
LeaveyGAbbottAWatsonM, et al. (2016) The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study. 16, 363.
27.
McClureENgJVitzthumK, et al. (2016) A mismatch between patient education materials about sickle cell disease and the literacy level of their intended audience. Preventing Chronic Disease13: E64.
28.
McGlynnMCGilliamAPiersonSK, et al. (2023) Education Liaison improves implementation of school accommodations for students with sickle cell disease. Pediatric Blood and Cancer70(10): e30602.
29.
MeierERMillerJL (2012) Sickle cell disease in children: drugs. 1.
30.
MorrisonAKMyrvikMPBrousseauDC, et al. (2018) Parents’ pain medication underdosing is associated with more emergency department visits in sickle cell disease. Pediatric Blood and Cancer65(4): e26906.
31.
NollRStithLGartsteinMA, et al. (2001) Neuropsychological functioning of youths with sickle cell disease: comparison with non-chronically ill peers. Journal of Pediatric Psychology26(2): 69–78.
32.
PanepintoJABonnerM (2012) Health-related quality of life in sickle cell disease: past, present, and future. Pediatric Blood and Cancer59(2): 377–385.
33.
PerryELCarterPABeckerHA, et al. (2017) Health literacy in adolescents with sickle cell disease. Journal of Pediatric Nursing36: 191–196.
34.
PhillipsSKanterJRuggieroKJ, et al. (2019) An approach to revising mHealth interventions for children and families: a case example in sickle cell disease. Research in Nursing & Health42(6): 483–493.
35.
PoplackDGFordisMLandierW, et al. (2014) Childhood cancer survivor care: development of the passport for care. Nature Reviews Clinical Oncology11(12): 740–750.
36.
QuillenJLiYDemskiM, et al. (2018) Comparing the knowledge of parents and survivors who attend a survivorship clinic. Journal of Pediatric Oncology Nursing35(1): 56–64.
37.
RosadoDLBuehlerSBotbol-BermanE, et al. (2018) Neuropsychological feedback services improve quality of life and social adjustment. The Clinical Neuropsychologist32(3): 422–435.
38.
RouthieauxJSarconeSStegengaK (2005) Neurocognitive sequelae of sickle cell disease: current issues and future directions. Journal of Pediatric Oncology Nursing22(3): 160–167.
39.
SchatzJBrownRTPascualJM, et al. (2001) Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease. Neurology56(8): 1109–1111.
40.
SchlenzAMSchatzJ (2023) Implementation of two developmental screening programs in sickle cell disease specialty care. Clinical Practice in Pediatric Psychology11(2): 157–167.
41.
SchrankFAMatherNMcGrewKS (2014) Woodcock-Johnson IV Tests of Achievement. Rolling Meadows. IL: Riverside.
42.
SpanoPKatzNDeLucoT, et al. (2021) Parent perceptions of pediatric neuropsychological evaluations: a systematic review. Child Neuropsychology27(7): 922–948.
43.
SteenRGFineberg-BuchnerCHankinsG, et al. (2005) Cognitive deficits in children with sickle cell disease. Journal of Child Neurology20(2): 102–107.
44.
UtrankarAMayo-GambleTLAllenW, et al. (2018) Technology use and preferences to support clinical practice guideline awareness and adherence in individuals with sickle cell disease. Journal of the American Medical Informatics Association25(8): 976–988.
45.
VarniJWSeidMKurtinPS (2001) PedsQLTM 4.0: reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations. Medical Care39(8): 800–812.
46.
VarniJWBurwinkleTMSeidM, et al. (2003) The PedsQL* 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics3: 329–341.
WillsKENelsonSCHennessyJ, et al. (2010) Transition planning for youth with sickle cell disease: embedding neuropsychological assessment into comprehensive care: table 1. Pediatrics126(Supplement 3): S151–S159.
49.
WongDPintoRPriceS, et al. (2024) What does competently delivered neuropsychological assessment feedback look like? Development and validation of a competency evaluation tool. The Clinical Neuropsychologist38(1): 116–134.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
