Validation of an “In the Moment” Pediatric Quality of Life Scale for Hospitalized Children

Ryan-Wenger, Nancy A.

BACKGROUND: Health-related quality of life from the individual’s perspective is widely used to measure of the impact of illness on the individual, outcomes of treatment, and quality of care. Varni and colleagues developed a series of Pediatric Quality of Life (PedsQL™) scales for children ages 5 to 18 years, including a generic Core Scale and scales for chronic disease-specific dimensions of children’s quality of life. These instruments capture quality of life over a specified period of time such as the past week, or the past month. During hospitalization, when perceptions of illness and treatment change daily or hourly, a brief in-the-moment quality of life measure was needed to evaluate quality of care and treatment outcomes.

PURPOSE: We evaluated the psychometric properties of the Pediatric Quality of Life “In the Moment” scale (PedsQL-IM), a brief measure of the impact of illness and outcomes of treatment during hospitalization. The instrument was based on Ecological Momentary Assessment Theory in which individuals’ behavior, emotions, and symptoms are assessed in his or her natural environment at that specific moment, thus, minimizing recall bias.

METHODS: In a cross-sectional study on the quality of nursing care from the children’s perspective, volunteer participants included 496 children and adolescents, ages 6 to 21 years, hospitalized in a 400-bed freestanding children’s hospital. This study is a secondary analysis of data from 410 (82.7%) patients who completed both the PedsQL-IM and the Revised Children’s Anxiety and Depression Scale (RCADS), which was used for convergent validity. The six PedsQL-IM items included “I feel: afraid or scared, sad or blue, angry, worried about what will happen to me, tired, and pain or hurt,” measured on an ordinal scale, e.g., “I feel angry…” 1=not at all, 2=a little bit angry, 3=somewhat, 4=quite a bit, 5=very much. Total scores ranged from 6 to 30. An Emotional Distress subscale score was the sum of the first four items, ranging from 4 to 20. Psychometric properties were analyzed from three theoretical perspectives: classical measurement theory, domain sampling theory, and generalizability theory.

RESULTS: The most frequently experienced PedsQL-IM symptom was tired, followed by pain, worried, sad, afraid, and angry. The mean Total Score was 4.5 ±3.6 and the mean Emotional Distress subscale score was 2.2 ±2.4. Internal consistency reliability of the PedsQL-IM was 0.71. Analyses based on generalizability theory indicated that differences among subjects explained 66.4% of the total variance, items explained 6.7%, and the interaction of subjects by items explained 26.9%. The generalizability coefficient of reliability was 0.71. Unrotated exploratory factor analysis indicated that all 6 items loaded from 0.593 to 0.719 on the first component. The two physical symptoms, tired and pain, also loaded strongly on component 2 (0.557 and 0.487 respectively). Convergent validity was demonstrated by moderately high correlations between RCADS T-scores and PedsQL-IM Total scores (r =0.494, p≤0.001), and Emotional Distress subscale scores (r =0.452, p ≤0.001). Each item correlated r ≥0.388 with at least one RCADS scale. Nearly 20% (n=80, 19.5%) of the 410 children had at least one RCADS subscale T-score in the borderline and/or clinical range. An ROC analysis indicated that a cut-off PedsQL-IM score of ≥4 included 65 (81%) of these children with a sensitivity of 81.3%.

CONCLUSIONS: Hospitalized children are frequently asked about their levels of pain, but are rarely asked about being worried about what will happen to them, afraid, angry, sad, or tired. The total PedsQL-IM score can be useful to evaluate overall “In the moment” quality of life over time. Children who rate any of these symptoms as somewhat, quite a bit, or very much, are signaling to their nurses and other providers that further questioning, intervention, and follow-up are essential. The PedsQL-IM could be administered with vital signs to evaluate the process and outcomes of pediatric patient care.