Perspectives on quality and content of information on the internet for adolescents with cancer.

OBJECTIVES: To assess the quality and content of Internet information about cancer from the perspectives of adolescents with cancer (AWC), their parents and healthcare professionals (HCP). METHODS: Key words relevant to pediatric cancer were searched across 6 search engines. Quality of information was appraised using the DISCERN tool. Website content completeness, accuracy, readability, cultural sensitivity, and desirability were assessed. RESULTS: Only 29 websites had DISCERN scores above 50 (indicating fair quality; mean 55.76 ± 8.23, range 42.50-70.5). The majority of sites targeted parents and only four (14%) were specific to AWC. Overall completeness of the sites was rated 11.46 out of 20 (± 3.60; range 4-17.5) and accuracy was rated 4/4, indicating high accuracy with moderate completeness. The average SMOG score was 11.87 (± 2.51, range 7.7-18.67) and the Flesch Reading Ease score was 57.44 (± 16.94, range 9.1-92.4) indicating that the material was too difficult to read. The average cultural sensitivity scores for the Format, Written message and Visual material scales were 3.08/4 (± 0.53, range 2-4), 3.48/4 (± 0.41, range 2.6-4) and 2.84/4 (± 1.03, range 0-4) indicating the websites were adequately culturally sensitive. On Average, websites had 4/21 features from the desirability checklist, indicating the sites had low desirability. CONCLUSION: Given the paucity of high quality Internet health information at an appropriate reading level for AWC there is a critical need for HCP's to develop Internet programs to meet their unique needs.

A cross Canada survey of sperm banking practices in pediatric oncology centers.

BACKGROUND: Childhood cancer survivors have identified fertility preservation as a major concern. Sperm banking is an established fertility preservation option in pubertal males. We sought to describe current practices in Canadian pediatric oncology programs, and to identify perceived barriers to sperm banking for male adolescents. PROCEDURE: A questionnaire was developed to (1) describe current sperm banking practices and facilities; (2) report on the utilization of sperm banking; and (3) identify barriers to sperm banking and possible solutions to improve current practices. A healthcare professional with an interest in fertility preservation within each institution was approached to participate in the study. RESULTS: Fifteen of 16 institutions participated, 2 have fertility preservation teams. Only one has written guidelines or adolescent focused educational material. Over 2 years, 50/262 (19%) adolescents in 12 institutions successfully banked a specimen. In 11 of these, additional information was available: of 85/172 (49%) adolescents offered the option to bank, 38/85 (45%) subsequently attempted. Reported barriers to sperm banking included the pressure to start therapy and restricted banking hours. Formal education of healthcare providers in fertility preservation practices, provision of financial support for families, and an adolescent focused approach were identified as important initiatives to improve sperm banking. CONCLUSIONS: There is a disparity in current sperm banking practices in Canada and at present, <25% of eligible male adolescents attempt to bank sperm. The development of a fertility preservation team, adolescent-specific guidelines, adolescent friendly sperm banking units, financial support, and improving knowledge translation among professionals and patients may improve the rates of banking.

Imaging in pediatric patients: time to think again about surveillance.

BACKGROUND: Despite concerns regarding ionizing radiation exposures from diagnostic imaging procedures in pediatric patients, many are deemed unavoidable or even mandated by treatment protocols. A prior review at our institution found patients with lymphoma had a higher median cumulative radiation exposure (191 mSv) versus other oncology subgroups (61 mSv). PURPOSE: Estimations of cumulative diagnostic radiation exposures were tabulated for 5 years from the first diagnostic scan for 30 consecutive lymphoma patients diagnosed in 2001. Each individual imaging procedure was reviewed and classified as protocol mandated or discretionary (for disease surveillance, good patient care or radiologist request). RESULTS: Almost all patients (28/29) received chemotherapy; one had surgery only. Individual cumulative radiation exposures ranged from 10 to 642 mSv. Over 5 years, 690 procedures were performed; 303 (44%) X-rays, 203 (29%) CTs, 157 (23%) radionucleotide, and 27 (4%) interventional procedures. Of these, 238 (34%) were protocol required and 452 (66%) discretionary (224 as part of good patient care for a co-morbid illness and 228 for evaluation of possible disease progression/surveillance). A total of 86/217 (40%) studies (including 43 CTs and 38 radionucleotide scans) were performed when the recurrence risk was low (>2 years off therapy). CONCLUSIONS: The majority of ionizing radiation procedures in this lymphoma cohort were discretionary. Given the excellent outcome of this group and the long-term risks; rational use of discretionary surveillance procedures is necessary. Guidelines for the appropriate use of surveillance imaging based on probability of risk recurrence must be developed in order to minimize ionizing radiation exposure.

Anaplastic large cell lymphoma of the ovary in a pediatric patient.

Lymphoma can rarely present as an ovarian tumor in children. We describe the unusual case of a 14-year-old adolescent with a locally disseminated ovarian anaplastic large-cell lymphoma, treated with surgery followed by chemotherapy, and who remains disease free at 2 years after diagnosis.

Anti-Müllerian hormone screening to assess ovarian reserve among female survivors of childhood cancer.

PURPOSE: Anti-Müllerian hormone (AMH) is an indicator of oocyte reserve in healthy females. The role of AMH testing in oncology remains investigational, although its sensitivity and stability over the menstrual cycle make it an attractive screening test for fertility assessment among female cancer survivors. We measured AMH level in survivors of childhood cancer and evaluated its association with treatment and patient factors. METHODS: Participants were adult female survivors of childhood malignancy treated with chemotherapy. Serum AMH was measured at a random day of the menstrual cycle. Multivariate analysis was used to evaluate the association between AMH level, alkylating agent exposure using the cyclophosphamide equivalent dose (CED), and other covariates. RESULTS: Sixty-six females with a median attained age of 23.3 years were eligible for analysis. Median AMH was 25.5 pM (range 0.5-108.0), at a median time of 11.5 years (range 1.4-25.1) since cancer diagnosis. Twenty-three patients (34.8%) had low AMH, including a significant proportion that reported normal menstrual cycles. Compared to ALL survivors, sarcoma survivors had significantly lower AMH levels. Among alkylating agents evaluated, procarbazine had the greatest adverse effect on AMH. In multivariate analysis, higher CED (p = 0.001), older age at diagnosis (p < 0.001), and use of oral contraceptive pills (p = 0.04) remained significantly associated with lower AMH. CONCLUSIONS: Random AMH can reveal evidence of oocyte depletion among female survivors reporting normal cycles, although low AMH should be interpreted cautiously among those taking oral contraception. Age at exposure and CED can aid identification of those more likely to have low AMH, although CED may underestimate the effect of procarbazine on oocyte reserve. IMPLICATIONS FOR CANCER SURVIVORS: Measurement of AMH can reveal apparent depletion of ovarian reserve in female childhood cancer survivors reporting normal menstrual cycles. Sarcoma survivors and those exposed to procarbazine may benefit from targeted AMH evaluation in an outpatient setting, and thereby allow appropriate fertility counseling before the onset of premature ovarian failure. The cyclophosphamide equivalent dose may facilitate comparison of the potential effect of different regimens on fertility.

Optic pathway gliomas in adolescence--time to challenge treatment choices?

BACKGROUND: Optimal management of optic pathway/hypothalamic glioma (OPHG) remains an ongoing challenge. Little is known about the natural history, management strategies, and outcomes in adolescents. Carboplatin-based chemotherapy is a useful modality in younger children, delaying radiation to their immature brains. National trials have focused on younger children and excluded adolescents from studies evaluating the role of chemotherapy. METHODS: This retrospective study describes clinical characteristics, treatment regimens, and outcomes in adolescents (aged ≥ 10 years) with OPHG (diagnosis during 1990-2006). Progression-free survival was compared with that in a cohort of younger children (aged <10 years). RESULTS: Thirty-three adolescents (19 females, 6 with neurofibromatosis type 1) with OPHG were identified within 2 Canadian pediatric oncology institutions. The majority presented with visual symptoms (82%). More than 55% (18 of 33) involved the posterior tract and/or hypothalamus (modified Dodge classification 3/4). Seventeen were initially observed; 8 remained progression free. Of the 25 of 33 adolescents who required active treatment, 9 (36%) needed second-line therapy. The progression-free survival for any first active treatment at age <10 years (52 of 102) or ≥ 10 years (25 of 33) was similar (46.9 vs 46.8 months; P = .60). In those who received chemotherapy as first-line treatment or after prior nonchemotherapy treatment failure, the progression-free survival trend was superior (62.9 vs 38.9 months) in those aged ≥ 10 years although not statistically significant (P = .16). CONCLUSIONS: Chemotherapy is a valuable treatment modality for the achievement of disease control even in adolescents; their progression-free survival compares favorably with that in younger children. We propose that chemotherapy be considered as a first-line modality in adolescents, avoiding potential radiation-associated morbidities.

Cumulative effective doses from radiologic procedures for pediatric oncology patients.

OBJECTIVE: Our aim was to estimate the cumulative effective doses (CEDs) from radiologic procedures for a cohort of pediatric oncology patients. METHODS: A retrospective cohort study of the imaging histories of 150 pediatric oncology patients (30 each in 5 subgroups, that is, leukemia, lymphomas, brain tumors, neuroblastomas, and assorted solid tumors) for 5 years after diagnosis was performed. All procedures involving ionizing radiation were recorded, including radiography, computed tomography (CT), nuclear medicine (NM) studies, fluoroscopy, and interventional procedures. CED estimates were calculated. RESULTS: Individual CED estimates ranged from <1 mSv to 642 mSv, with a median of 61 mSv. CT and NM were the greatest contributors; CT constituted 30% of procedures but 52% of the total CED, and NM constituted 20% and 46%, respectively. There was considerable variability between tumor subgroups. CED estimates were highest in the neuroblastoma (median: 213 mSv [range: 36-489 mSv]) and lymphoma (median: 191 mSv [range: 10-642 mSv]) groups and lowest in the leukemia group (median: 5 mSv [range: 0.2-57 mSv]). CONCLUSIONS: CEDs from diagnostic and interventional imaging for pediatric oncology patients vary considerably according to diagnoses, individual clinical courses, and imaging modalities used. Increased awareness may promote strategies to reduce the radiation burden to this population.