Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment

Feinstein, James A.; Feudtner, Chris; Blackmer, Allison B.; Valuck, Robert J.; Fairclough, Diane L.; Holstein, Jacqueline; Gregoire, LiseAnne; Samay, Sadaf; Kempe, Allison

doi:10.1001/jamanetworkopen.2020.29082

Cited by 23 publications

(25 citation statements)

References 35 publications

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“…This was a cross-sectional analysis of all patients enrolled in a larger study measuring symptoms and polypharmacy in children with SNI, as described in prior publications. 25,26 We analyzed patients' reconciled medication information captured in the electronic health record (EHR) during a routine primary care visit, as well as patients' subsequent 30-day acute primary care, emergency, and inpatient health care utilization. The parent study was approved by the Colorado Multiple Institutional Review Board and registered with ClinicalTrials.gov (NCT03849066).…”

Section: Methodsmentioning

confidence: 99%

Complexity of Medication Regimens for Children With Neurological Impairment

et al. 2021

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IMPORTANCE Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs.OBJECTIVE To measure the complexity and potentially modifiable aspects of CMRs using the Medication Regimen Complexity Index (MRCI) and to examine the association between MRCI scores and subsequent acute visits. DESIGN, SETTING, AND PARTICIPANTSThis cross-sectional study was conducted between April 1, 2019, and December 31, 2020, at a single-center, large, hospital-based, complex care clinic.Participants were children with SNI aged 1 to 18 years and 5 or more prescribed medications. EXPOSURE Home medication regimen complexity was assessed using MRCI scores. The total MRCI score is composed of 3 subscores (dosage form, dose frequency, and specialized instructions). MAIN OUTCOMES AND MEASURESPatient-level counts of subscore characteristics and additional safety variables (total doses per day, high-alert medications, and potential drug-drug interactions) were analyzed by MRCI score groups (low, medium, and high score tertiles). Associations between MRCI score groups and acute visits were tested using Poisson regression, adjusted for age, complex chronic conditions, and recent health care use. RESULTSOf 123 patients, 73 (59.3%) were male with a median (interquartile range [IQR]) age of 9 (5-13) years. The median (IQR) MRCI scores were 46 (35-61 [range, 8-139]) overall, 29 (24-35) for the low MRCI group, 46 (42-50) for the medium MRCI group, and 69 (61-78) for the high MRCI group.The median (IQR) counts for the subscores were 6 (4-7) dosage forms per patient, 7 (5-9) dose frequencies per patient, and 5 (4-8) instructions per patient, with counts increasing significantly across higher MRCI groups. Similar trends occurred for total daily doses (median [IQR],[31][32][33][34][35][36][37][38][39][40][41][42][43][44][45] doses), high-alert medications (median [IQR], 3 [1-5] medications), and potential drug-drug interactions (median [IQR], 3 [0-6] interactions). Incidence rate ratios of 30-day acute visits were 1.26 times greater (95% CI, 0.57-2.78) in the medium MRCI group vs the low MRCI group and 2.42 times greater (95% CI, 1.10-5.35) in the high MRCI group vs the low MRCI group. CONCLUSIONS AND RELEVANCEHigher MRCI scores were associated with multiple dose frequencies, complicated by different dosage forms and instructions, and associated with subsequent acute visits. These findings suggest that clinical interventions to manage CMRs could target various aspects of these regimens, such as the simplification of dosing schedules.

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Section: Methodsmentioning

confidence: 99%

Complexity of Medication Regimens for Children With Neurological Impairment

et al. 2021

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“…[1][2][3] They typically have at least one severe chronic condition, technology dependence, multiple subspecialist involvement, and extensive care coordination needs. 1 Polypharmacy is common in CMC [4][5][6] and was recently identified as a high-priority research area by clinicians and families. 7 Adverse drug reactions (ADRs) and drug therapeutic failure are both a cause and a consequence of polypharmacy in children.…”

Section: Introductionmentioning

confidence: 99%

Pharmacogenetic profiling via genome sequencing in children with medical complexity

et al. 2022

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Background Children with medical complexity (CMC) are a priority pediatric population, with high resource use and associated costs. Genome-wide sequencing is increasingly organized for CMC early in life as a diagnostic test. Polypharmacy becomes common as CMC age. Clinically relevant pharmacogenetic (PGx) information can be extracted from existing genome sequencing (GS) data via GS-PGx profiling. The role of GS-PGx profiling in the CMC population is unclear. Methods Prescribed medications were extracted from care plans of 802 eligible CMC enrolled in a structured Complex Care Program over a 10-year period. Drug-gene associations were annotated using curated Clinical Pharmacogenetics Implementation Consortium data. GS-PGx profiling was then performed for a subset of 50 CMC. Results Overall, 546 CMC (68%) were prescribed at least one medication with an established PGx association. In the GS-PGx subgroup, 24 (48%) carried variants in pharmacogenes with drug-gene guidelines for one or more of their current medications. All had findings of potential relevance to some medications, including 32 (64%) with variants in CYP2C19 that could affect their metabolism of proton-pump inhibitors. Conclusion GS-PGx profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of CMC. Impact Polypharmacy and genetic test utilization are both common in children with medical complexity. The role of repurposing genome sequencing data for pharmacogenetic profiling in children with medical complexity was previously unclear. We identified a high rate of medication use with clinically relevant drug-gene associations in this priority pediatric population and demonstrated that relevant pharmacogenetic information can be extracted from their existing genome sequencing data. Pharmacogenetic profiling at the time of diagnostics-focused genetic testing could be an efficient way to incorporate precision prescribing practices into the lifelong care of children with medical complexity.

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“…4,5 In addition, >40% of children with SNI have frequent symptoms such as pain and gastrointestinal problems. 6,7 Given the complexity of their care needs, children with SNI are often admitted to the hospital for acute illnesses, troubleshooting of technology, distressing symptoms, and chronic health exacerbations. 8 Despite frequent exposure to this patient population, pediatric clinicians may feel ill-equipped to meet the needs of children with SNI and their families.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The Impact of Caring for Children With Severe Neurological Impairment on Clinicians

Bogetz

Trowbridge

Jonas

et al. 2022

Clin Pediatr (Phila)

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Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.

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Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment

Cited by 23 publications

References 35 publications

Complexity of Medication Regimens for Children With Neurological Impairment

Complexity of Medication Regimens for Children With Neurological Impairment

Pharmacogenetic profiling via genome sequencing in children with medical complexity

The Impact of Caring for Children With Severe Neurological Impairment on Clinicians

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