Evidence map›Paper›PMID 36456199›Full record

ArticleNeurology2023

The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

Monica E Lemmon, Mary C Barks, Simran Bansal, Sarah Bernstein, Erica C Kaye, Hannah C Glass, Peter A Ubel, Debra Brandon, Kathryn I Pollak

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Neurology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

24 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
  2. Article
  3. Review
  4. Article
  5. Article
  6. Article
  7. Article
  8. Review
  9. Review
  10. Article
  11. Article
  12. Review
  13. Article
  14. Review
  15. Review
  16. Review
  17. Article
  18. Review
  19. Review
  20. Observational
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

9 authors.

Monica E LemmonFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC. monica.lemmon@duke.edu.
Mary C BarksFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Simran BansalFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Sarah BernsteinFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Erica C KayeFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Hannah C GlassFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Peter A UbelFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Debra BrandonFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.
Kathryn I PollakFrom the Departments of Pediatrics (M.E.L., M.C.B., S. Bansal, S. Bernstein), Population Health Sciences (M.E.L., K.I.P.), Duke University School of Medicine, Durham, NC; University of Utah School of Medicine (S. Bernstein), Salt Lack City; Department of Oncology (E.C.K.), St. Jude Children's Research Hospital, Memphis, TN; Departments of Neurology and Pediatrics (E.C.K.), UCSF Benioff Children's Hospital and Department of Epidemiology & Biostatistics (H.C.G.), University of California, San Francisco; Fuqua School of Business and Sanford School of Public Policy (P.A.U.), Duke University, Durham; and Duke University School of Nursing (D.B.), Durham; Cancer Prevention and Control (KIP), Duke Cancer Institute, Durham, NC.

Funding

Decision Making for Infants with Neurologic ConditionsK23NS116453 · NINDS · DUKE UNIVERSITY · PI LEMMON, MONICA · 2020 to 2024
$942k
NINDS NIH HHS K23 NS116453
6 · The paper itself

Abstract

BACKGROUND AND

objectivesClinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.

methodsParents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes.

resultsFifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19-46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support. DISCUSSION: The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

Indexed as

Nervous System DiseasesParentsAdultChildCommunicationFemaleHumansInfantInfant, NewbornLongitudinal StudiesMiddle AgedPrognosisQualitative ResearchYoung Adult

Identifiers

PMID36456199
PMCPMC9984217

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.