A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions:- is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.

Can parents rate their child's health-related quality of life? Results of a systematic review.

The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review

Scope of the report This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? Objectives (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. Method Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. Results Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)

Quality-of-life measures in chronic diseases of childhood

In order to provide burn patients with adequate pain relief, the nurses must be able to accurately evaluate the patients' pain levels and to assess whether sufficient analgesia is achieved or not. The present study examined this issue by comparing the pain ratings in 42 patients hospitalized for burn injuries and 42 nurses. The patient and the attending nurse were asked to rate, independently of each other, the intensity of the pain felt by the patient during a therapeutic procedure and at rest. When analgesic medication was given prior to the procedure, both the patients and the nurses were asked to estimate the degree of pain relief. All ratings were obtained using visual analogue and verbal scales. The results revealed significant but small correlations between the nurses' and patients' ratings. Frequently, the nurses underestimated or overestimated the patients' pain. Discrepancies were also observed in the evaluation of pain medication efficacy, the nurses showing a tendency to overestimate the degree of pain relief. The accuracy of the nurses' perception did not vary as a function of the patients' age, socioeconomic status or burn severity. However, the number of years of experience in burn-nursing had a significant influence on the nurses' estimation of the patients' pain during therapeutic procedures. Theoretical and clinical implications of these results are discussed with a particular emphasis on the need to implement systematic procedures to assess pain and success of analgesia. Additional recommendations to optimize pain management in burn patients are also made.

Comparisons between patients' and nurses' assessment of pain and medication efficacy in severe burn injuries.

https://www.jpsmjournal.com/article/0885-3924(95)00134-4/pdf

Pain management knowledge, attitudes and clinical practice: the impact of nurses' characteristics and education

Eighty-four nurse-patient dyads were studied to obtain descriptions of pain from medical, surgical and oncology patients experiencing pain. These descriptions were compared with the documentation of pain assessment recorded by the nurses providing care to these patients. Neither the descriptions of pain nor the amount of information documented about that pain differed significantly across the three groups. For each group, nurses documented significantly less than 50% of what the patients described. Inadequate documentation of pain assessment has legal and continuity of patient care implications.

Patricia S. O'Sullivan

Papers

Comparison of medical, surgical and oncology patients' descriptions of pain and nurses' documentation of pain assessments