Parental perception of child vulnerability in childhood cancer survivors.

BACKGROUND: Parents' perception of their children's vulnerability to illness following cancer treatment is largely unknown, but is important to understand given known challenges of transitioning survivors to postcancer care. We investigated the frequency of and factors associated with perceived vulnerability by parents of childhood cancer survivors attending a regional survivorship clinic. PROCEDURE: This cohort study was offered to all parents of pediatric patients (currently ≤18 years) attending the Yale childhood cancer survivorship clinic January 2010 to October 2016 who were ≥1 year postcurative cancer therapy. Participating parents (one per patient) completed the standardized Child Vulnerability Scale at the beginning of the clinic visit (cutoff score ≥10 for perceived vulnerability). Patient sociodemographics, cancer history, and posttherapy complications were abstracted from medical records. RESULTS: Overall, 116 parents participated (98% participation rate) consisting of 89% mothers; survivors were 46% female, had a current mean age of 12.7 ± 3.9 years, and were a mean of 6.4 ± 3.8 years posttherapy. Twenty-eight percent (n = 33) of parents perceived their children as vulnerable. Survivor sociodemographics (age, sex, race/ethnicity, family income, insurance, parental marital status, number of siblings), cancer diagnosis, years off-therapy, survivorship visit number, treatment intensity, and late complications (number, type, severity) were not associated with perception of vulnerability. CONCLUSIONS: A sizeable proportion of parents continue to perceive their children as vulnerable even years after cancer therapy completion independent of current health status or past cancer history. Our data suggest the need to educate all parents of childhood cancer survivors regarding health risk, including those at lower risk for late complications.

Hemoglobinopathy Screening in a 15-Year-old Patient With Anemia.

Identification of hemoglobinopathies in pediatric patients can be challenging and has important implications for the patient, as well as family members. Laboratory identification of uncommon hemoglobin (Hb) variants can pose a significant problem. Although many Hb variants can be largely identified using conventional electrophoresis and HPLC, confirmatory Hb DNA analysis may be necessary. This report provides an example of a pediatric patient with a complex heterozygous Hb by electrophoresis and HPLC, which necessitated identification by DNA analysis. Clinical and laboratory scenarios warranting Hb DNA analysis are additionally discussed.

New health conditions identified at a regional childhood cancer survivor clinic visit.

BACKGROUND: Specialty childhood cancer survivorship clinics have been established to screen for potential treatment-related effects. Given the limited empirical data regarding the merit of survivorship clinics, we assessed the frequencies of newly identified, therapy-related effects in survivors who attended Health, Education, Research, Outcomes for Survivors (HEROS) clinic at Yale during 2003-2009. PROCEDURE: A total of 213 survivors in remission, who were diagnosed with cancer at an age ≤21 years and were ≥3 years after cancer diagnosis, underwent screening based on cancer treatment exposures according to the children's oncology group long-term follow-up guidelines. The frequencies and associated factors of newly identified health conditions were determined. Odds ratios (OR) and their 95% confidence intervals were estimated using multivariate regression models with stepwise selection. RESULTS: Prior to the HEROS clinic visit, 49% of patients had at least one previously known late complication of therapy. After the visit, a total of 98 new health conditions were identified in 73 patients (34%). Newly identified complications in screened patients included pulmonary dysfunction (23%), endocrinopathy (19%), osteoporosis (17%), dyslipidemia (8%), neurologic impairment (4%), cardiovascular deficit (3%) and subsequent cancer (3%). Age at cancer diagnosis (OR = 1.06 [1.00-1.11]), chest irradiation (OR = 2.92 [1.58-5.40]), and history of ≥1 other treatment-related complication(s) (OR = 2.20 [1.18-4.07]) were associated with a higher likelihood of having new conditions identified. CONCLUSION: Risk-based screening at a specialty childhood cancer survivor clinic detected a substantial number of previously unrecognized, treatment-related health complications in a group of survivors already receiving regular medical care elsewhere.