Complexity of Medication Regimens for Children With Neurological Impairment
children with neurologic impairment; complex medication regimens; Cross-Sectional Studies; Parent support
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 PARTICIPANTS: This 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 MEASURES: Patient-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. RESULTS: Of 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 [20-45] 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 RELEVANCE: Higher 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.
Feinstein JA; Friedman H; Orth LE; Feudtner C; Kempe A; Samay S; Blackmer AB
JAMA Network Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2021.22818" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.22818</a>
Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Infant; Child; Comorbidity; Female; Male; Child Preschool; Adolescence; Data Analysis Software; Human; Confidence Intervals; Descriptive Statistics; Record Review; Health Resource Utilization; Cross Sectional Studies; Funding Source; Scales; Severity of Illness; Central Nervous System Agents -- Therapeutic Use; Nervous System Diseases -- Epidemiology -- In Adolescence; Nervous System Diseases -- Epidemiology -- In Infancy and Childhood; Nervous System Diseases -- Symptoms; Peripheral Nervous System Agents -- Therapeutic Use; Polypharmacy
Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and polypharmacy, parents reported that children experienced multiple concurrent high-distress symptoms, notably irritability (65.0%), insomnia (55.0%), and pain (54.0%). Although higher symptom burdens were associated with increasing polypharmacy, opportunities existed to optimize pharmacotherapy; for example, among 54.0% of children with pain, only 61.0% were prescribed an analgesic. Meaning: Comprehensive parent-reported symptom data paired with medication data could help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms. This cross-sectional study examines whether higher global symptom scores are associated with use of more medications and assesses associations between specific symptoms and medications among children with severe neurological impairment. Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use. Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications. Design, Setting, and Participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020. Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data. Main Outcomes and Measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated. Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic. Conclusions and Relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
Feinstein JA; Feudtner C; Blackmer AB; Valuck RJ; Fairclough DL; Holstein J; Gregoire LA; Samay S; Kempe A
JAMA Network Open
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.29082</a>