Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms

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

doi:10.1001/jamapediatrics.2020.2987

Cited by 13 publications

(17 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Parents of children with complex chronic conditions focused more closely on monitoring their child's symptoms. 36,37 This finding is consistent with families' lived experience: parents of children living with complex chronic conditions develop a constant vigilance, including assessing and monitoring their child's physiologic signs and symptoms, to maintain the tenuous balance between their child's unique health needs in tandem with family life. 38 Longer LOS also corresponded with an increased parental focus on pain and suffering.…”

Section: Discussionsupporting

confidence: 70%

“…Consistent with the nursing pain scores and existing literature, 33-35 suffering was especially memorable to parents of children with cancer. Parents of children with complex chronic conditions focused more closely on monitoring their child's symptoms 36,37 . This finding is consistent with families' lived experience: parents of children living with complex chronic conditions develop a constant vigilance, including assessing and monitoring their child's physiologic signs and symptoms, to maintain the tenuous balance between their child's unique health needs in tandem with family life 38 …”

Section: Discussionsupporting

confidence: 63%

“…35,42,43 Parents of children with complex chronic conditions may benefit from stronger involvement in caring activities during the EOL period, including tending to their child's needs in close partnership with the bedside nursing team. [36][37][38] Stronger nurse-parent partnership may also present opportunities for improved communication, shared decision making, and psychosocial care. 44 Improved understanding of the underlying relationships between illness trajectory, LOS, and family/clinician perceptions of EOL care should inform development of interventions.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

View full text Add to dashboard Cite

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

show abstract

Section: Discussionsupporting

confidence: 70%

Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

View full text Add to dashboard Cite

show abstract

“…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

Self Cite

View full text Add to dashboard Cite

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.

show abstract

“…Like patient-reported outcomes data, parent-reported data regarding a child's symptoms offer a complementary, if not more accurate and superior, view of a child's experience, compared with clinician-reported data. 5,28 Both parent and clinician assessment of symptoms in infants and in older patients who are unable to communicate are challenging, especially for symptoms such as low energy or dry mouth, which may not have clear observable manifestations. 29,30 Patient-reported ratings for a symptom may be associated, broadly speaking, with that patient's mental state (such as anxiety or despondency).…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

et al. 2021

Self Cite

View full text Add to dashboard Cite

IMPORTANCE Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report. OBJECTIVE To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure. DESIGN, SETTING, AND PARTICIPANTS Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron

show abstract

Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms

Abstract: for statistical consulting. The named individuals were not compensated for their contributions.1. Williams DR, Medlock MM. Health effects of dramatic societal events-ramifications of the recent presidential election.

Cited by 13 publications

References 6 publications

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Complexity of Medication Regimens for Children With Neurological Impairment

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

Contact Info

Product

Resources

About