Parents' Perceptions of Primary Care: measuring parents' experiences of pediatric primary care quality.

OBJECTIVE: A measure of pediatric primary care quality that is brief, practical, reliable, and valid would be useful to patients and pediatricians, policymakers, and health system leaders. Parents have a unique perspective from which to report their experiences with their child's primary care, and these reports may be valid indicators of pediatric primary care quality. The research objective was to develop a brief parent report of their children's primary care, the Parent's Perceptions of Primary Care measure (P3C), and to test its reliability and validity as a measure of pediatric primary care quality. STUDY DESIGN: The P3C was based on the elements of primary care as defined by the Institute of Medicine. Pretesting of domain content and item clarity was accomplished via focus interviews. The P3C was developed in English and translated to Spanish, Vietnamese, and Tagalog. The 23-item P3C yields a total score, as well as subscale scores for continuity, access, contextual knowledge, communication, comprehensiveness, and coordination. The P3C was administered to 3371 parents of children in kindergarten through sixth grades in a large, urban school district. PRINCIPAL FINDINGS: The percentage of missing values for the overall sample was 1.88%, indicating acceptable feasibility. Range of measurement, assessed via floor and ceiling effects, was moderate to good. Cronbach's coefficient alpha, an indicator of scale internal consistency reliability, was 0.95 for the P3C total scale. Factor analysis supported the subscale structure, and P3C scores were higher for children with health insurance, whose parents completed the survey in English, and who had a regular physician. P3C scores were positively related to parent reports of the child's health-related quality of life. CONCLUSIONS: The P3C is a practical, reliable, and valid measure of parents' reports of pediatric primary care quality. This brief measure could be used alone, or in conjunction with other measures, to enhance outcomes and evaluate the impact of systems changes on the delivery of the main elements of primary care.

PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

BACKGROUND: The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions. METHODS: The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. RESULTS: Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. CONCLUSION: The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.

Measuring quality of care for vulnerable children: challenges and conceptualization of a pediatric outcome measure of quality.

This article addresses conceptual and practical issues in the assessment of pediatric health care quality, outlines a conceptual model for measuring quality, and describes ongoing research to validate an outcome measure of health care quality for vulnerable children. Pediatric quality measurement is distinct from that for adults due to development, dependence, differential epidemiology, demographic factors, and differences between the child and adult health services systems. A noncategorical approach to quality measurement, rather than one based on illness status or specific condition, is necessary to adequately measure quality for the majority of children, both healthy and ill. One promising noncategorical measure of pediatric health care quality is health outcome, specifically health-related quality of life (HRQOL). The Pediatric Quality of Life Inventory (PedsQL), a brief, practical, reliable, valid, generic pediatric HRQOL measure, is a suitable candidate measure. Ongoing research to validate the PedsQL as an outcome measure of health care quality is described.

Outcomes assessment: meeting the challenge of accountability in pediatric rheumatology.

As providers of health services, pediatric rheumatologists must learn to manage financial risk, deliver quality services, and provide value to a number of healthcare stakeholders. What these deliverables mean in a competitive healthcare environment are explained. Ways to achieve these goals, provide excellent care to children with rheumatic conditions, and differentiate pediatric rheumatologists in the marketplace are discussed.

Assessing patient outcomes with higher hematocrit levels.

Quality improvement theory teaches that, as providers of health care, physicians must determine and then meet the needs of their primary customers, the patients and payers. The needs of patients and payers are met and measured by the outcome of services and treatments delivered by providers to patients. In general, outcomes fall into three main categories: clinical, financial, and patient based. All parties within the end-stage renal disease (ESRD) community seek the best value (quality/cost) when receiving, delivering, or paying for ESRD services. Because there is not yet a consensus on the definition(s) of quality in the care of ESRD patients, a determination of value remains largely cost dependent. Thus payers, who have no easy or reliable way to compare the quality of providers, based many of their decisions on the best available price. Patient-based outcomes include the assessment of patient satisfaction and health status (health-related quality of life). These outcomes broaden the perspective on quality of care beyond the clinical and laboratory measures traditionally used in the ESRD Program. The assessment of these outcomes can give providers additional insights into the burdens of renal failure and its treatment on the lives of their patients. This information then can be used to design or modify the services provided. Physicians are required to provide high-quality, effective, appropriate, and cost-efficient services. How to meet the often conflicting outcome needs of payers and patients remains a significant challenge. It is essential that all within the ESRD community reach some agreement on the operational definition(s) of quality process and outcome indicators.(ABSTRACT TRUNCATED AT 250 WORDS)

Quality improvement for the ESRD community.

As an introduction to this issue of Advances in Renal Replacement Therapy, fundamental principals of quality improvement ar described, with examples for the dialysis unit, and critical differences between quality assurance and quality improvement are explained.

Monitoring dialysis patients' health status.

We report 3 years of experience with quarterly assessments of the self-reported health of dialysis outpatients using the Short Form-36 (SF-36) Health Survey. The SF-36 measures eight different dimensions of health: physical function, role limitations due to physical problems, bodily pain, general health perceptions, vitality, social function, role limitations due to emotional problems, and general mental health. On each dimensions, the respondent receives a score from 0 to 100. A higher score indicates better health. Program logistics and results are described, including reliability coefficients, standard deviations, and standard errors of measurement for the SF-36 in this patient population. The SF-36 was completed an average of 4.4 times by 112 patients over an average 14-month follow-up; 40 patients responded at least six times. On most dimensions, the dialysis patients' scores were lower and more variable than those of a sample of the general US population matched for age and sex. For example, mean initial physical function score (+/- SD) was 48.5 +/- 31.2 for the dialysis patients and 84.8 +/- 23.3 for the general population. The mean initial general health perception score of the dialysis patients was 43.7 +/- 23.9 with 71.9 +/- 20.3 for the general population. In contrast, general mental health scores were more comparable. The mean initial general mental health score was 69.6 +/- 17.5 for our patients and 75.5 +/- 18.0 for the general population. Reliability (Cronbach's alpha) ranged from 0.77 for general mental health to 0.93 for physical function. The 95% confidence intervals around individual scores were approximately 20 points, except for role-physical and role-emotional, which were both approximately 30 points. Two case reports compare information obtained from the SF-36 with the dialysis team's assessments of the patient, as recorded in the medical record. The two patients' comments on reviewing their SF-36 results are also summarized. Patient reactions to the health status assessment program are explored, and potential benefits and areas for further work are outlined. Serial measurement of the health status of dialysis patients allows the recognition of clear patterns in individual patient responses. These patterns sometimes suggest that the patient is either substantially more or less impaired than the dialysis team had thought. Changes in these patterns, both transient and protracted, frequently exceed 95% confidence intervals for patient-level scores. Longitudinal health status profiles of individual dialysis patients, accumulated by repeated self-assessment using the SF-36, enhance rather than merely restate the providers' intuitive judgments expressed in the medical record.

Patient-based health status measurements in pediatric dialysis: expanding the assessment of outcome.

Children with end-stage renal disease (ESRD) are now long-term survivors of dialysis and transplantation. To define and provide optimal care for these children, clinicians must assess and appreciate the impact of renal disease and its treatment on their patients' quality of life. The purpose of this pilot project was to examine the correlates of health, family cohesion, and compliance in adolescents with ESRD. Twenty adolescents with ESRD were asked to respond to a generic self-report questionnaire designed to measure self-perceived physical and psychosocial health and family life. A separate, clinician-reported questionnaire was used to assess compliance with the therapeutic regimen. Results indicated that adolescents with ESRD report their general health to be poor. In addition, patients described as less compliant reported poorer health, less family cohesion, and less participation in family activities than their more compliant peers. Although caution must be observed in interpreting our clinical findings, this initial investigation of the health and well-being of an adolescent ESRD population underscores the important relationship between compliance, perceived health status, and family cohesion.

Patient-based health status measures in outpatient dialysis. Early experiences in developing an outcomes assessment program.

This paper describes the initial development of a patient-based outcomes assessment program in an outpatient dialysis unit. This project presented four logistical and practical issues that are discussed in this paper: patient acceptance of quarterly administrations of a generic health status survey (the SF-36); timing of administration during dialysis session; respondent burden; and staff burden. Also discussed are three issues related to the clinical use of these assessments: medical record status of SF-36 data; use in clinical decisionmaking; and clinicians' responses to aggregate data from patient-based health status assessments. The investigation reported presents strong evidence of patient acceptance of the SF-36. Data collection problems reflected the nature of a busy dialysis unit, and most have been corrected. Considering functional status, the role functioning of dialysis patients is most adversely affected; among well-being measures, patients are most compromised by pain and lack of energy. Clinicians' reviews of these results point to the need for normative data, information about severity of primary and comorbid diseases, and knowledge of relationships between SF-36 scores and physiologic parameters to make clinical use of generic health outcome assessments.

Nephrocalcinosis complicating medical treatment of posthemorrhagic hydrocephalus.

Furosemide and acetazolamide are often used concurrently to treat posthemorrhagic hydrocephalus in premature infants with intraventricular hemorrhage. Eleven premature infants with posthemorrhagic hydrocephalus were monitored for the development of hypercalciuria during treatment using urine calcium/creatinine (Ca/Cr) ratios (normal: less than or equal to 0.21). Seven of 11 infants (64%) developed hypercalciuria; 5 of those 7 infants had nephrocalcinosis on renal ultrasonography. Infants who developed nephrocalcinosis had urine Ca/Cr ratios of 0.5-4.0. In all 5 infants with nephrocalcinosis, renal calculi decreased and urine Ca/Cr improved after drug therapy was discontinued. The combined use of acetazolamide and furosemide as therapy for posthemorrhagic hydrocephalus places premature infants at high risk for nephrocalcinosis. It is suggested that urine Ca/Cr be monitored closely in infants receiving these drugs and that other treatment modalities be considered when the urine Ca/Cr ratio exceeds 0.21.

Estimating energy requirements for children with renal disease: a comparison of methods.

The resting energy expenditure of children with renal disease is unknown. We assessed resting energy expenditure using indirect calorimetry in a group of 16 children aged 3.6 to 15.7 years (mean +/- standard deviation = 9.4 +/- 4.6 years) with renal disease and compared these results with standard prediction formulas. Measured resting energy expenditure was compared with norms predicted from the Mayo Clinic standards for children 6 years of age and older, the combined data reported by Passmore, and the most recent equations provided by the Food and Agriculture Organization/World Health Organization/United Nations University (FAO/WHO/UNU). The Mayo Clinic standards overpredicted resting energy expenditure in 7 of 10 subjects, whereas the Passmore standards and the FAO/WHO standards underpredicted resting energy expenditure in 10 of 16 and 9 of 16 subjects, respectively. When adjusted for the age of the subject, our findings indicate that all three standards are useful for predicting resting energy expenditure in children 6 years and older with renal disease, but no current standard adequately predicts the resting energy expenditure of children less than 6 years of age with renal disease.