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

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.

PROMIS Paediatric Mobility tool is correlated with accelerometer-measured physical activity in children with hip diseases

“…The PROMIS data from the current study population suggested that 70% of children had some degree of physical limitation and 30% had normal function. Understanding the limitations induced by hip disease is important as they have negative impact on the general quality of life of these children (3,9), but whether this translates into reducing their ability to perform daily physical activity such as walking is unknown. Accelerometers were employed in the current study to measure physical activity level in children with hip disease and demonstrated that the average daily MVPA of these children is of 101±37 minutes.…”

“…Irrespective of the cause, the main symptoms of childhood hip disease are pain and limitations in hip joint mobility (1,2). These symptoms negatively influence the quality of life of affected children through limitations in their usual activities, including walking, running and playing with their friends (3).…”

The outcomes of Perthes’ disease

“…Qualitative interviews were held with parents and children to identify the key outcomes of Perthes' disease amongst families. The methods and in-depth outcomes are reported elsewhere [14].…”

“…10 outcomes not identified through the systematic review process were identified from qualitative interviews with parents [14] and added. The full list of the patient reported outcomes (PROs) obtained is reported in Table 2.…”

<p>Exploring how to evaluate a qualitative patient-centered outcome measure: literature review and illustrative example – a Perthes child-friendly measure</p>

“…Following a comprehensive literature search, possible ways to evaluate a qualitative measure which comprises predominantly open-ended questions and, moreover, in a manner that honors the principles of qualitative research, are explored. To aid insight into the potential issues involved, the discussion and approach are situated against one newly-designed qualitative outcome measure, developed for young children (here, aged 5–8 years old) with the pediatric hip condition of Perthes 13…”