Assessing quality of life in paediatric clinical practice

Abstract

The rising prevalence of children with chronic conditions has made quality of life an increasingly important outcome measure in paediatric practice. The discrepancy between doctors' and patients' perceptions of quality of life makes formal assessment necessary. In this paper we use a case scenario to answer commonly asked questions. What is quality of life and who can assess it? Why assess quality of life in the clinical setting? Is it feasible to measure in routine clinical practice? How is quality of life formally assessed? We provide a basic outline of the language and methods of quality of life assessment and use the case scenario to discuss the process of choosing an appropriate instrument. We conclude that quality of life assessment in clinical practice is feasible and provides benefits for both patients and doctors. The benefits include better informed doctors, improved patient doctor communication and a means to effectively monitor quality of life as a treatment outcome.

Pain and Distress in Inpatient Children According to Child and Mother Perceptions

“…Mothers were also able to detect whether their children were feeling more or less pain. The relationship between child and caregiver pain perceptions has also been confirmed in other studies based on surveys of children and mothers (Barakat, Patterson, Daniel, & Dampier, 2008;Morrow, Quine, Heaton, & Craig, 2010). The emotional connection between caregivers and children and the primary caregiver's proximity to his or her child affects perceptions of emotional indicators and of pain experienced by the child (Pillai-Riddell & Craig, 2007).…”

Health‐related quality of life and congenital heart disease in Australia

“…Items are non‐weighted, and a Likert measurement scale is used . PedsQL has demonstrated feasibility, validity, sensitivity and responsiveness for healthy and patient populations internationally and within Australia and is validated for completion face‐to‐face, by the respondents at home, and via telephone . PedsQL scales are reliable for parent‐proxy report and for children aged 8–18.…”

Quality of life prediction in children with joint hypermobility syndrome

“…HRQOL is a multidimensional construct including the physical, social and emotional aspects of a patient's well‐being that are relevant and important to the individual and that are likely to be influenced by health interventions, the impact of a disease and its treatment . In the paediatric setting, the child is considered to be the expert in describing their HRQOL; however, the addition of parent‐reported HRQOL provides another perspective, thereby increasing the value of the information gained . Due to the familial nature of JHS, parents may possibly be ‘hypervigilant’ in response to their child's complaints in an attempt to reduce the burden of the condition and access early diagnosis and professional care that they may not have had as children .…”