Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies.

PURPOSE: While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. METHODS: This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years postsurgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors' cancer and medical history. RESULTS: We classified families into a matrix of healthcare management resources (high vs. low) and survivors' healthcare needs (high vs. low). We found that patients' healthcare needs did not always correspond to their caregivers' management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in nonmarital relationships. CONCLUSIONS: As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors' well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.

HIV care: continuing medical education and consultation needs of nurses, physicians, and pharmacists.

This article explores the impact of provider characteristics on their HIV-related continuing medical education (CE) attendance, consultation needs, satisfaction with skills, and willingness to provide care. A total of 731 users (52% physicians, 26% nurses, 11% pharmacists, and 10% nurse practitioners and physician assistants) of an HIV consultation were surveyed by mail (76% response). Significant differences in provider variables were found to be related to HIV experience and profession. Experienced providers reported more CE, more satisfaction with skills, lower consultation needs, more consultations sought, and more willingness to take new patients than other providers. "Unwillingness" was commonly explained by concerns over quality of care or staying up-to-date. Relative to physicians, nurses had more CE hours, were more dissatisfied with their skills, and had greater consultation needs. Although all providers had high consultation or CE needs in some areas, accessibility to such programs is particularly important for low-volume providers.

Infants with bilirubin levels of 30 mg/dL or more in a large managed care organization.

OBJECTIVE: To describe the incidence, etiology, treatment, and outcome of newborns with total serum bilirubin (TSB) levels >or=30 mg/dL (513 micro mol/L). DESIGN: Population-based case series. SETTING: Eleven Northern California Kaiser Permanente Medical Care Program hospitals and 1 affiliated hospital. PATIENTS: Eleven infants with TSB levels of >or=30 mg/dL in the first 30 days after birth, identified using computer databases from a cohort of 111,009 infants born 1995-1998. OUTCOME MEASURES: Clinical data from the birth hospitalization, rehospitalization, and outpatient visits in all infants; psychometric testing at age 5 (N = 3), neurologic examinations by child neurologists at age 5 (N = 3), or primary care providers (N = 7; mean age: 2.2 years); Parent Evaluation of Developmental Status (N = 8; mean age: 4.2 years). RESULTS: Maximum TSB levels of the 11 infants ranged from 30.7 to 45.5 mg/dL (525 micro mol/L to 778 micro mol/L; mean: 34.9 mg/dL [597 micro mol/L]). Four were born at 35 to 36 weeks gestation, and 7 were exclusively breastfed. Two had apparent isoimmunization; the etiology for the other 9 remained obscure, although only 4 were tested for glucose-6-phosphate dehydrogenase deficiency and 1 was bacteremic. None had acute neurologic symptoms. All received phototherapy and 5 received exchange transfusions. One infant died of sudden infant death syndrome; there was no kernicterus at autopsy. Two were lost to follow-up but were neurologically normal when last seen for checkups at 18 and 43 months. One child was receiving speech therapy at age 3. There were no significant parental concerns or abnormalities in the other children. CONCLUSIONS: In this setting, TSB levels >or=30 mg/dL were rare and generally unaccompanied by acute symptoms. Although we did not observe serious neurodevelopmental sequelae in this small sample, additional studies are required to quantify the known, significant risk of kernicterus in infants with very high TSB levels.

Jaundice noted in the first 24 hours after birth in a managed care organization.

OBJECTIVE: To investigate the significance of jaundice noted in the first 24 hours after birth in a community setting. DESIGN: Supplementary analyses of a nested case-control study. SETTING: Northern California Kaiser Permanente Medical Care Program. PATIENTS: Six hundred thirty-one randomly selected newborns (controls) and 140 cases with total serum bilirubin levels of 25 mg/dL (428 micro mol/L) or higher from a cohort of 105 384 newborns of at least 2000 g birth weight and at least 36 weeks' gestational age, born between January 1, 1995, and December 31, 1998. MAIN OUTCOME MEASURES: Notations of jaundice in the medical record, timing and results of bilirubin testing, use of phototherapy, and development of bilirubin levels of 25 mg/dL or higher. RESULTS: Among the controls, the cumulative probability of a notation of jaundice (corrected for early hospital discharge using survival analysis) was 2.8% within 18 hours and 6.7% within 24 hours. In these newborns, cumulative proportions that had bilirubin levels measured were 38% within 12 hours and 43% within 24 hours of when jaundice was first noted. About 40% of bilirubin levels measured within 24 hours were above the estimated 95th percentile for age. Compared with newborns not noted to be jaundiced on the first day, newborns noted to be jaundiced within 24 hours were more likely to receive phototherapy (18.9% vs 1.7%; relative risk, 10.1; 95% confidence interval, 4.2-24.4) and to develop a bilirubin level of 25 mg/dL or higher (odds ratio, 2.9; 95% confidence interval, 1.6-5.2), but the absolute risk increase for total serum bilirubin levels of 25 mg/dL or higher was 0.2%. CONCLUSION: Jaundice noted in the medical record in the first 24 hours after birth was uncommon and often clinically significant in this setting, but other factors also need to be considered in determining its importance.