Patterns of physician follow-up among young cancer survivors: report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program.

OBJECTIVE: To describe the frequency and pattern of physician visits in 1998 to 2000 among childhood and adolescent cancer survivors in British Columbia (BC), to compare their use of physician services with use in the general population, and to examine the effects of clinical and sociodemographic factors on care. DESIGN: Retrospective, observational, population-based cohort study, with a comparison group. Cohort records from population registries were linked to physician claim data and oncology visit records for 1998 to 2000. SETTING: Outpatient physician care in BC. PARTICIPANTS: All (N = 1157) survivors of cancer diagnosed before age 20 years in BC between 1970 and 1992 who survived at least 5 years after diagnosis, and an age-sex frequency-matched population sample of 11 570 individuals. MAIN OUTCOME MEASURES: Probability of a physician visit and frequency of physician visits. RESULTS: Approximately 97% of survivors saw at least 1 physician in the 3-year period, compared with 50% of the general population sample. The probability of a GP visit was 96% higher (adjusted 95% confidence interval [CI] 1.8 to 2.1), and the likelihood of a specialist visit was 157% higher (adjusted 95% CI 2.4 to 2.8) than for the general population. Survivors were more than twice as likely to see GPs at least 10 times (adjusted relative risk 2.23, 95% CI 2.0 to 2.4) and had 49% more visits than the general population. Cancer diagnosis and treatment affected visit patterns, but socioeconomic status and rural residency did not significantly affect the probability of a visit. CONCLUSION: Demand for physician care among childhood and adolescent cancer survivors is considerably greater than for the general population, and this need persists many years after diagnosis. Physicians need information on the unique health care requirements of this patient group in order to provide appropriate care.

Establishment of a pilot pediatric registry for chronic vasculitis is both essential and feasible: a Childhood Arthritis and Rheumatology Alliance (CARRA) survey.

OBJECTIVE: To identify the need for, and feasibility of, establishing a web-based USA/Canadian registry of children with chronic systemic vasculitis--an otherwise insufficiently studied population. METHODS: Physician members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA; n = 126) were invited to complete 2 surveys exploring vasculitis-related experience, beliefs about childhood versus adult vasculitis, and commitment to contribute patients to a prospective registry. Diagnoses included Wegener's granulomatosis (WG), childhood polyarteritis nodosa, microscopic polyangiitis (MPA), Takayasu's arteritis, primary angiitis of the central nervous system (PACNS), vasculitis, and unclassified vasculitis. RESULTS: One or both surveys were completed by 102 (81%) physicians. Almost half of first-survey respondents had been in practice for > 15 years. Collective estimated lifetime experience was >1500 patients (WG and unclassified vasculitis were the most common diagnoses). Three hundred seventeen children with vasculitis were seen in the year preceding the survey, with most physicians seeing only 2-5 patients. The majority of respondents believed that childhood vasculitis differed from adult disease, particularly with respect to classification criteria and disease activity markers. Fifty-nine members committed to contribute 2 years' data (approximately 120 patients) to a pilot registry limited to time of diagnosis, focusing on WG, MPA, Churg-Strauss syndrome, PACNS, and unclassified vasculitis. CONCLUSION: We obtained overwhelming consensus from an experienced body of pediatric rheumatologists on the need to study childhood-onset vasculitis independently from adult disease, together with commitment from sufficient members to prospectively contribute 2 years' data to a limited pilot registry to answer some basic questions about presenting and diagnostic features and initial treatment practices at disease onset.

Systemic lupus erythematosus in the pediatric North American Native population of British Columbia.

OBJECTIVE: To compare the estimated prevalence and the phenotype of pediatric systemic lupus erythematosus (SLE) in a North American Native population with other ethnic groups. METHODS: We performed a retrospective chart review of all patients with SLE currently followed at the single tertiary care pediatric rheumatology clinic in our province. Data collected included demographic characteristics, family history, classification criteria for SLE, laboratory tests at diagnosis, SLE Disease Activity Index (SLEDAI) at presentation, and Systemic Lupus International Collaborating Clinics (SLICC) damage index at 6 months. RESULTS: The prevalence of SLE in our pediatric Native population is 8.8 per 100,000 (n = 6) compared to 3.3 per 100,000 in the non-NAI population (n = 34) (p = 0.037, Fisher's exact test; OR 2.6, 95% CI 1.1-6.3). Family history of rheumatic disease is more common in our Native children (5/6, 83%) compared to non-Native children (5/34, 15%) (p = 0.002 Fisher's exact test; OR 29, 95% CI 2.8-303.3). The sample size is too small for reliable interpretation of disease phenotype, autoantibodies, disease activity, and disease damage measures. CONCLUSION: There is an increased prevalence of SLE and familial autoimmunity among Native children in our population. Public health measures to screen children at risk may detect early disease and may reduce disease morbidity.

Detecting anomalous sexual interests in juvenile sex offenders.

Phallometric studies suggest that some adolescent sex offenders exhibit anomalous sexual interests. However, there have been ethical and practical objections to the phallometric testing of adolescents. Alternative measures may be needed if we are to understand the role of anomalous sexual interests in adolescent sexual offending. The Screening Scale for Pedophilic Interests (SSPI) was designed as a brief measure of pedophilic interests based on sexual offense history variables: any male victims, more than one victim, any victims under age 12, and any unrelated victims. Score on the SSPI is significantly and positively correlated with phallometrically measured pedophilic interests among adult offenders against children. In this study, the SSPI was scored in three samples of adolescent sex offenders who underwent phallometric testing for pedophilic interests. Scores on the SSPI were positively correlated with a phallometric index of relative sexual arousal to children in all three samples. This relationship was strongest using visual stimuli. The positive relationship between SSPI scores and pedophilic responding held up despite the use of different penile measures, stimulus sets, procedures, and scoring methods. The usefulness of the SSPI as a proxy measure among adolescents is discussed.