Core Outcome Measures in Effectiveness Trials

Perspectives on the Social, Physical, and Emotional Impact of Living With Perthes’ Disease in Children and Their Family: A Mixed Methods Study

General Information

Abstract:
Aim. To determine the social, physical, and emotional impact of living with Perthes’ disease on affected children and their family (caregivers). Patients and Methods. Through a mixed methods approach, we interviewed 18 parents and explored the perspectives of 12 children affected by Perthes’ disease (mean = 7.1 years, SD = ±4.1 years) using a survey tool. Thematic analysis of parents’ interviews provided an insight into disease-specific factors influencing patients and family’s daily life activities. Using the childhood survey tool, good and bad day scores were analyzed using MANOVA (multivariate analysis of variance). Results. Thematic analysis of the parent interviews (main themes n = 4) identified a marked effect of the disease on many facets of the child’s life, particularly pain and the impact on sleep, play, and school attendance. In addition, the interviews identified a negative effect on the family life of the parents and siblings. Children indicated that activities of daily living were affected even during “good days” (P < .05), but pain was the key limiting factor. Conclusion. Perthes’ disease negatively affects the social, physical, and emotional well-being of children and their family. These findings provide outcome domains that are important to measure in day-to-day care and add in-depth insight into the challenges caused by this disease for health care professionals involved in clinical management.

Authors:
Donato Giuseppe Leo, MSc1, Rebecca Murphy, PhD1, Tina Gambling, PhD2, Andrew Long, PhD3, Helen Jones, PhD1, Daniel C. Perry, MB ChB(Hons), FRCS (Orth), PhD4

1Liverpool John Moores University, Liverpool, UK
2Cardiff University, Cardiff, UK
3University of Leeds, Leeds, UK
4University of Liverpool, Liverpool, UK

Publication

Journal:
Global Pediatric Health
Volume:
6
Issue:
Pages:
-
Year:
2019
DOI:
Further Study Information

Date:
June 2017 - August 2017
Funding source(s):
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Donato Giuseppe Leo is supported by a PhD fellowship from Liverpool John Moores University. Additional support has been provided by the Perthes’ Association UK. This article presents independent research supported by a National Institute for Health Research (NIHR) clinician scientist fellowship (to Daniel C Perry; grant number NIHR/CS/2014/14/012). All authors carried out this research independently of the funding bodies.

Health Area

Disease Category
Orthopaedics & trauma

Disease Name
Perthes' Disease

Target Population

Age Range
0 - 16

Sex
Either


Nature / type of Intervention
Unknown

Method(s)

Interview
Survey

Stakeholders Involved

Consumers (caregivers)
Consumers (patients)

Study Type

Patient perspectives

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