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Feasibility and Acceptability of Methods to Collect Follow-Up Information From Parents 12 Months After Their Child’s Emergency Admission to Pediatric Intensive Care*

Pulham, Rachel Anne BSc1; Wray, Jo PhD1; Feinstein, Yael MD2; Brown, Katherine MD, MPH2; Pierce, Christine FRCPCH3; Nadel, Simon MD4; Pathan, Nazima PhD5; Garralda, Elena FRCPsych, FRCPCH6; Ramnarayan, Padmanabhan FRCPCH, MD4,7

Pediatric Critical Care Medicine: April 2019 - Volume 20 - Issue 4 - p e199-e207
doi: 10.1097/PCC.0000000000001892
Online Clinical Investigations
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Objectives: To evaluate the feasibility and acceptability of different methods of collecting follow-up data from parents 12 months after their child’s emergency admission to a PICU.

Design: Mixed-methods explanatory sequential design.

Setting: One regional PICU transport service and three PICUs in England.

Patients: Children undergoing emergency transport to PICU recruited to an ongoing biomarker study whose parents consented to be contacted for follow-up 12 months after PICU admission.

Interventions: None.

Measurements and Main Results: Parents or guardians who consented were asked to complete three questionnaires about their child’s functional status, quality of life, and behavior 12 months after PICU admission. Parents were given a choice about method of questionnaire completion: postal, online, or telephone interview and also asked for telephone feedback about the process and the reasons for their choice. Of 486 parents who consented to be contacted at 12 months, 232 were successfully contacted. Consent to receive questionnaires was obtained in 218 of 232 (94%). Of the 218 parents, 102 (47%) chose to complete questionnaires online (with 77% completion rate), 91 (42%) chose to complete postal questionnaires (48% completion rate), and 25 (11%) chose to complete questionnaires by telephone interview (44% completion rate).

Conclusions: Parents expressed different preferences for follow-up questionnaire completion. Response rates varied by completion method. Understanding and catering for parental preferences is an important factor in maximizing response rates for follow-up studies in intensive care.

1Centre for Outcomes & Experience Research in Children’s Health, Illness & Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.

2Cardiac Intensive Care Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.

3Paediatric Intensive Care Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.

4Paediatric Intensive Care Unit, St Mary’s Hospital, Imperial College Healthcare NHS Trust, London, United Kingdom.

5Department of Paediatrics, University of Cambridge, Cambridge, United Kingdom.

6Centre for Psychiatry, Imperial College London, London, United Kingdom.

7Children’s Acute Transport Service (CATS), Critical Care Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.

*See also p. 393.

Ms. Pulham and Dr. Wray are joint first authors.

The authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: p.ramnarayan@gosh.nhs.uk

Copyright © 2019 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies