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Background: There is substantial heterogeneity in symptom management provided to pediatric patients with cancer. The primary objective was to describe the adaptation process and specific adaptation decisions related to symptom management care pathways based on clinical practice guidelines. The secondary objective evaluated if institutional factors were associated with adaptation decisions. Methods: Fourteen previously developed symptom management care pathway templates were reviewed by an institutional adaptation team composed of two clinicians at each of 10 institutions. They worked through each statement for all care pathway templates sequentially. The institutional adaptation team made the decision to adopt, adapt or reject each statement, resulting in institution-specific symptom management care pathway drafts. Institutional adaption teams distributed the 14 care pathway drafts to their respective teams; their feedback led to care pathway modifications. Results: Initial care pathway adaptation decision making was completed over a median of 4.2 (interquartile range 2.0-5.3) weeks per institution. Across all institutions and among 1350 statements, 551 (40.8%) were adopted, 657 (48.7%) were adapted, 86 (6.4%) were rejected and 56 (4.1%) were no longer applicable because of a previous decision. Most commonly, the reason for rejection was not agreeing with the statement (70/86, 81.4%). Institutional-level factors were not significantly associated with statement rejection. Conclusions: Acceptability of the 14 care pathways was evident by most statements being adopted or adapted. The adaptation process was accomplished over a relatively short timeframe. Future work should focus on evaluation of care pathway compliance and determination of the impact of care pathway-consistent care on patient outcomes. Trial registration: clinicaltrials.gov, NCT04614662. Registered 04/11/2020, https://clinicaltrials.gov/ct2/show/NCT04614662?term=NCT04614662&draw=2&rank=1. [ABSTRACT FROM AUTHOR]

Background: Skin cancer is the most common secondary malignancy among young adult childhood cancer survivors (YA‐CCS). Skin examination to detect skin cancer early (including melanoma as well as basal or squamous cell skin cancers), both physician‐based (PSE) and self‐skin exam (SSE), is recommended, particularly for radiotherapy‐exposed YA‐CCS who are at high risk of developing skin cancer. Methods: Awareness and prevalence of skin examination and demographic, clinical, and healthcare correlates were examined in a population‐based sample of YA‐CCS with diverse cancer types excluding melanoma. Descriptive frequencies and logistic regression models were conducted using sample weights to correct for non‐response bias with PSE, SSE and adherence to both as outcomes. Results: The sample comprised 1064 participants with 53% Latino. Eight percent of participants were aware of the need for skin examination; 9% reported receipt of PSE within past 2 years; 35% reported regular SSE; and 6% were adherent to both. Among the radiotherapy‐treated, 10% were aware of the need for skin examination, 10% reported recent PSE; 38% reported regular SSE; and 8% were adherent to both. Healthcare and clinical factors including healthcare self‐efficacy, engagement in cancer‐related follow‐up care, greater treatment intensity and greater number of treatment‐related late effects were positively associated with PSE and SSE. Latino YA‐CCS were less likely to engage in PSE and SSE. Conclusion(s): Adherence to recommended screening for skin cancer was low in this at‐risk population, notably for YA‐CCS exposed to radiotherapy. The development of effective strategies to expand skin cancer screening is needed in this at‐risk population. [ABSTRACT FROM AUTHOR]

Objective: To (1) characterize change in type of insurance coverage among childhood cancer survivors from diagnosis to survivorship and (2) examine whether insurance change is associated with cancer‐related follow‐up care utilization. Data Sources: Participants in this study were derived from the Project Forward study, a population‐based, observational study of childhood cancer survivors in Los Angeles County that used California Cancer Registry data to identify participants. Study Design: Multivariable logistic regression models incorporating survey nonresponse weights estimated the change in the marginal predicted probabilities of insurance change and survivorship care, adjusting for demographic, socioeconomic, and clinical covariates and clustering by treating hospital. Data Collection/Extraction Methods: Study participants were diagnosed with cancer who were younger than age 20 years while living in Los Angeles County from 1996 to 2010 and were older than the age 18 years at the time of survey participation, from 2015 to 2017 (N = 1106). Principal Findings: Most participants were 18–26 years of age, male, diagnosed before 2004, Hispanic/Latino race/ethnicity, single, without children, highly educated, not employed full time, and lived with their parents at survey. Almost half (N = 529) of participants experienced insurance change from diagnosis to survivorship. Insurance change was associated with insurance coverage at diagnosis, as those who were uninsured were most likely to experience change and gain coverage during survivorship (by 51 percentage points [ppt], standard error [SE] of 0.05). Survivors who experienced any change had decreased probability of reporting a recent cancer‐related follow‐up care visit, a disparity that was magnified for those who lost insurance coverage (−5 ppt, SE 0.02 for those who gained coverage; −15 ppt, SE 0.04 for those who lost coverage). Conclusions: Insurance coverage change was associated with lower cancer‐related follow‐up care utilization. Indeed, survivors who experienced any insurance coverage change had decreased probability of having a cancer‐related follow‐up care visit, and this was magnified for those who lost their insurance coverage. [ABSTRACT FROM AUTHOR]

Background Childhood cancer survivors (CCS) face increased risk of morbidity and are recommended to receive lifelong cancer-related follow-up care. Identifying factors associated with follow-up care can inform efforts to support the long-term health of CCS. Methods Eligible CCS (diagnosed between 1996 and 2010) identified through the Los Angeles County Cancer Surveillance Program responded to a self-report survey that assessed demographic, clinical, health-care engagement, and psychosocial risk and protective factors of recent (prior 2 years) cancer-related follow-up care. Weighted multivariable logistic regression was conducted to identify correlates of care. All statistical tests were 2-sided. Results The overall response rate was 44.9%, with an analytical sample of n = 1106 (54.2% Hispanic; mean [SD] ages at survey, diagnosis, and years since diagnosis were 26.2 [4.9], 11.6 [5.4], and 14.5 [4.4] years, respectively). Fifty-seven percent reported a recent cancer-related visit, with lower rates reported among older survivors. Having insurance, more late effects, receipt of a written treatment summary, discussing long-term care needs with treating physician, knowledge of the need for long-term care, having a regular source of care, and higher health-care self-efficacy were statistically significantly associated with greater odds of recent follow-up care, whereas older age, Hispanic or Other ethnicity (vs non-Hispanic White), and years since diagnosis were associated with lower odds of recent care (all Ps <.05). Conclusions Age and ethnic disparities are observed in receipt of follow-up care among young adult CCS. Potential intervention targets include comprehensive, ongoing patient education; provision of written treatment summaries; and culturally tailored support to ensure equitable access to and the utilization of care. [ABSTRACT FROM AUTHOR]

Background: The Lansky Play‐Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child‐reported functioning have not been evaluated. Methods: Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers. Caregivers and clinicians reported LPPS scores, and children completed Patient‐Reported Outcomes Measurement Information System (PROMIS) pediatric functioning and symptom measures before treatment (time 1 [T1]) and after treatment (time 2 [T2]). t tests and mixed‐linear models were used to assess differences in caregiver and clinician LPPS scores; polyserial correlations quantified associations between PROMIS and LPPS scores. Results: Of 482 children, 281 had matched caregiver‐ and clinician‐reported LPPS T1/T2 scores. Caregivers rated children significantly worse on the LPPS than clinicians at both T1 (mean, 73.3 vs 87.4; P <.01) and T2 (mean, 67.9 vs 83.1; P <.01). These differences were not related to a child's age (P =.89), diagnosis (P =.17), or sex (P =.64) or to the time point (P =.45). Small to moderate associations existed between caregiver‐ and clinician‐reported LPPS ratings and child‐reported PROMIS scores for mobility (caregiver T1/T2 r = 0.51/0.45; P <.01; clinician T1/T2 r = 0.40/0.35; P <.01), fatigue (caregiver T1/T2 r = –0.46/–0.37; P <.01; clinician T1/T2 r = –0.26/–0.27; P <.01), and pain interference (caregiver T1/T2 r = –0.32/–0.30; P <.01; clinician T1/T2 r = –0.17/–0.31; P <.01). Caregivers and clinicians assigned significantly lower LPPS scores at T2 (caregiver Δ = –5.37; P <.01; clinician Δ = –4.20; P <.01), whereas child‐reported PROMIS scores were clinically stable. Conclusions: Significant differences between clinician and caregiver LPPS ratings of child performance were sustained over time; their associations with child reports were predominantly small to moderate. These data suggest that clinician‐reported LPPS ratings by themselves are inadequate for determining clinical trial eligibility and should be supplemented by appropriate measures of a child's functional status reflecting the child and caregiver perspectives. The Lansky Play‐Performance Scale (LPPS) is commonly used by clinicians for determining eligibility for pediatric cancer clinical trials. In this prospective cohort study of children receiving cancer treatment, LPPS ratings differ between clinicians and caregivers and are poorly correlated with child reports. This challenges the use of the LPPS for that purpose. [ABSTRACT FROM AUTHOR]

Background: Survivor‐focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric‐ to adult‐centered care from the parent perspective. Methods: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long‐term follow‐up (LTFU) clinic at a single institution. We used a semi‐structured interview protocol with the parents and conducted a thematic content analysis. Results: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric‐ to adult‐centered follow‐up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self‐efficacy in order to achieve a successful transition, and (3) the survivor‐focused care should include support for survivors' overall well‐being, including financial and health insurance literacy. Conclusions: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor‐focused providers while also supporting self‐efficacy and financial literacy as it relates to health insurance. [ABSTRACT FROM AUTHOR]

Background: Despite improvements in survival rates, cancer treatments have significant side effects that affect the quality of life of children and their families. When an ill child cannot self‐report symptoms (eg, he or she is too ill), caregiver (parent) reporting becomes critical. This study evaluates the validity and reliability of the caregiver‐reported Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped‐PRO‐CTCAE [Caregiver]) measure. Methods: A diverse sample of caregivers with children receiving treatment at 9 oncology centers completed the Ped‐PRO‐CTCAE [Caregiver] measure, the Patient‐Reported Outcomes Measurement Information System® (PROMIS®) Parent Proxy measures, the Lansky Play‐Performance Scale (PPS), medication use questions, and Global Impressions of Change (GIC). Construct validity (including convergent, discriminant, and known groups validity and responsiveness over time) and reliability (stability) were examined. Results: A majority of the 473 caregivers were female (85%), non‐Hispanic White (61%), and married (75%). Symptoms assessed with the Ped‐PRO‐CTCAE [Caregiver] and PROMIS Parent Proxy measures were strongly correlated (e.g., r for pain = 0.78; r for fatigue = 0.78; and r for depression = 0.83). Most of the Ped‐PRO‐CTCAE [Caregiver] item mean scores distinguished among PPS function levels and between children who did take medications for symptom control and children who did not. Changes in Ped‐PRO‐CTCAE [Caregiver] item mean scores were responsive to GIC over time. Test‐retest evaluation found moderate to high agreement (57.8%‐93.3%) over time. Conclusions: This study found strong evidence for the convergent and discriminant validity, known groups validity, responsiveness, and stability of the Ped‐PRO‐CTCAE [Caregiver] measure in a large and diverse sample of caregivers. The caregiver perspective provides a valuable and unique insight into the experiences of children and adolescents undergoing cancer treatment. Lay Summary: Despite advances in cancer treatments, children and adolescents continue to suffer from treatment side effects, including pain, nausea, fatigue, and emotional distress, that can adversely affect quality of life for children and their families.Although it is best for children to report how they are feeling, there are times when a child may be too young or too ill to self‐report.This study provides critical evidence for a new type of questionnaire that allows the caregiver or parent to report accurately what the child is experiencing. This measure can be used to improve adverse event reporting and child cancer care. This study provides evidence for the validity and reliability of the caregiver‐reported Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Events measure for capturing symptomatic adverse events experienced by children undergoing cancer treatment. Especially during times when a child may be too ill or too young or does not prefer to report his or her symptoms, this measure allows the caregiver to communicate to the clinicians those symptoms that are affecting the child's life. The goal for this measure is to help to improve adverse event reporting and cancer care for children. [ABSTRACT FROM AUTHOR]

Background: Radiation‐related screening guidelines for survivors of childhood cancer currently use irradiated regions (IR) to determine risk for late effects. However, contemporary radiotherapy techniques utilize volumetric dosimetry (VD) to determine organ‐specific exposures, which could inform need for late effect surveillance. Methods: This cross‐sectional cohort study involved patients treated for cancer using computerized tomography‐planned irradiation at Children's Hospital Los Angeles from 2000–2016. Organs at risk were identified using both VD and IR. Under each method, Children's Oncology Group Long‐Term Follow‐Up Guidelines were applied to determine radiation‐related potential late effects and their correlative recommended screening practices. Patients served as their own controls. Mean number of potential late effects per patient and recommended screening practices per patient per decade of follow‐up were compared using paired t‐tests; comparisons were adjusted for diagnosis and gender using random effects, repeated measure linear regression. Results: In this cohort (n = 132), median age at end of treatment was 10.6 years (range, 1.4–20.4). Brain tumor was the most common diagnosis (45%) and head/brain the most common irradiated region (61%). Under IR and VD, the mean number of potential late effects flagged was 24.4 and 21.7, respectively (−11.3%, p < 0.001); concordance between the two methods was 6.1%. Under VD, the difference in mean number of recommended screening practices per patient was −7.4% in aggregate but as large as −37.0% for diagnostic imaging and procedures (p < 0.001 for both). Conclusion: Use of VD rather than IR is feasible and enhances precision of guideline‐based screening for radiation‐related late effects in long‐term childhood cancer survivors. [ABSTRACT FROM AUTHOR]

Objective: The Intensity of Treatment Rating (ITR) Scale condenses treatment and clinical characteristics into a single measure to study treatment effects on downstream health outcomes across cancer types. This rating was originally developed for clinicians to determine from medical charts. However, large studies are often unable to access medical charts for all study participants. We developed and tested a method of estimating treatment intensity (TI) using cancer registry and patient self-reported data. Methods: We estimated two versions of TI for a cohort of pediatric cancer survivors—one utilized information solely available from cancer registry variables (TIR) and the other included registry and self-reported information (TIS) from survey participants. In a subset of cases (n = 135) for whom the gold standard TI (TIC) was known, both TIR and TIS were compared to TIC by calculating percent agreement and weighted Cohen's kappa, overall and within cancer subtypes. Results: In comparison to TIC, 71% of TI scores from both methods were in agreement (k = 0.61 TIR/0.54 TIS). Among subgroups, agreement ranged from lowest (46% TIR/39% TIS) for non-defined tumors (e.g., "Tumor-other"), to highest (94% TIR/94% TIS) for acute lymphoblastic leukemia (ALL). Conclusions: We developed a methodology to estimate TI for pediatric cancer research when medical chart review is not possible. High reliability was observed for ALL, the most common pediatric cancer. Additional validation is needed among a larger sample of other cancer subgroups. The ability to estimate TI from cancer registry data would assist with monitoring effects of treatment during survivorship in registry-based epidemiological studies. [ABSTRACT FROM AUTHOR]

Background: Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient-reported outcome (PRO) instrument for symptomatic AEs to support the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE) (the Pediatric PRO-CTCAE). The current study developed a standardized algorithm that maps all possible Pediatric PRO-CTCAE response patterns to recommended CTCAE grades to improve the accuracy of AE reporting in pediatric oncology trials.Methods: Two rounds of surveys were administered to experienced cancer clinicians across 9 pediatric hospitals. In round 1, pediatric oncologists assigned CTCAE grades to all 101 possible Pediatric PRO-CTCAE response patterns. The authors evaluated clinician agreement of CTCAE grades across response patterns and categorized each response pattern as having high or low agreement. In round 2, a survey was sent to a larger clinician group to examine clinician agreement among a select set of Pediatric PRO-CTCAE response patterns, and the authors examined how clinical context influenced grade assignment.Results: A total of 10 pediatric oncologists participated in round 1. Of the 101 possible patterns, 89 (88%) had high agreement. The Light weighted kappa was averaged across the 10 oncologists (Light kappa = 0.73; 95% CI, 0.66-0.81). A total of 139 clinicians participated in round 2. High clinician agreement remained for the majority of generic response patterns and the clinical context did not typically change grades but rather improved agreement.Conclusions: The current study provides a framework for integrating child self-reported symptom data directly into mandated AE reporting in oncology trials. Translating Pediatric PRO-CTCAE responses into clinically meaningful metrics will guide future cancer care and toxicity grading. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer survivors (CCS) report high unmet information needs. This study examined the prevalence of cancer-related information-seeking among CCS and investigated associations between information-seeking behavior and positive health outcomes such as follow-up care.Methods: Participants (n = 193) were young adult CCS diagnosed with cancer in Los Angeles County, 54% of Hispanic ethnicity, with a mean age of 19.87, in remission, and at least 2 years from completion of treatment. CCS were asked where they accessed health information related to their cancer with response options categorized into four information domains: hospital resources, social media, other survivors, and family members. Multivariable logistic regression was used to assess variables associated with each information domain, including sociodemographics, post-traumatic growth (i.e., reporting positive changes since cancer diagnosis), health care engagement, level of education, and health insurance status.Results: Hospital resources were the most commonly accessed information domain (65.3%), and CCS of Hispanic ethnicity (vs. non-Hispanic) were more likely to access this source. Seeking information from other cancer survivors was positively associated with follow-up care and post-traumatic growth. Hispanic CCS were marginally less likely to seek information from other survivors and family than non-Hispanics.Conclusions: While CCS obtain information from a variety of sources, hospital resources are an important site for access, particularly for individuals of Hispanic ethnicity. Information sharing between survivors may promote positive health care engagement; however, Hispanic CCS may be less likely to utilize this resource and may face barriers in information sharing with other cancer survivors. [ABSTRACT FROM AUTHOR]

Background: Poor enrollment of adolescents and young adults (AYAs) (ages 15-39 years) onto cancer clinical trials (CCTs) may contribute to inferior survival gains compared with children. In this study, the authors assessed whether differences in CCT availability would explain lower CCT enrollment for early AYAs (eAYAs) (ages 15-21 years).Methods: This prospective, observational cohort study was conducted at a single academic children's hospital. For consecutive patients who were newly diagnosed with cancer over a 13-month period, it was determined whether an appropriate CCT existed nationally or was available locally and whether enrollment on that CCT occurred. The proportions of eAYAs versus children in each category were compared using the chi-square test. The impact of age and other factors on enrollment status was assessed using logistic regression analysis.Results: Among 216 patients, 58 were eAYAs, and 158 were children. There was no difference in the proportion of eAYAs versus children who had an existing CCT (28 of 58 eAYAs [48.3%] vs 85 of 158 children [53.8%]; P = .47) or an available CCT (23 of 58 eAYAs [39.7%] vs 75 of 158 children [47.5%]; P = .31). However, significantly fewer eAYAs were enrolled when a CCT was available (7 of 23 eAYAs [30.4%] vs 50 of 75 children [67.7%]; P = .002). In multivariable analysis, eAYAs were significantly less likely than children to be enrolled in an available CCT (adjusted odds ratio, 0.22; 95% confidence interval, 0.08-0.62).Conclusions: Equal proportions of children and eAYAs had CCTs available, but significantly fewer eAYAs were enrolled. These findings suggest that, for eAYAs, factors other than CCT availability are important enrollment barriers and should be addressed. Cancer 2018;124:983-90. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Background: Sodium thiosulfate is an antioxidant shown in preclinical studies in animals to prevent cisplatin-induced hearing loss with timed administration after cisplatin without compromising the antitumour efficacy of cisplatin. The primary aim of this study was to assess sodium thiosulfate for prevention of cisplatin-induced hearing loss in children and adolescents.Methods: ACCL0431 was a multicentre, randomised, open-label, phase 3 trial that enrolled participants at 38 participating Children's Oncology Group hospitals in the USA and Canada. Eligible participants aged 1-18 years with newly diagnosed cancer and normal audiometry were randomly assigned (1:1) to receive sodium thiosulfate or observation (control group) in addition to their planned cisplatin-containing chemotherapy regimen, using permuted blocks of four. Randomisation was initially stratified by age and duration of cisplatin infusion. Stratification by previous cranial irradiation was added later as a protocol amendment. The allocation sequence was computer-generated centrally and concealed to all personnel. Participants received sodium thiosulfate 16 g/m2 intravenously 6 h after each cisplatin dose or observation. The primary endpoint was incidence of hearing loss 4 weeks after final cisplatin dose. Hearing was measured using standard audiometry and reviewed centrally by audiologists masked to allocation using American Speech-Language-Hearing Association criteria but treatment was not masked for participants or clinicians. Analysis of the primary endpoint was by modified intention to treat, which included all randomly assigned patients irrespective of treatment received but restricted to those assessable for hearing loss. Enrolment is complete and this report represents the final analysis. This trial is registered with ClinicalTrials.gov, number NCT00716976.Findings: Between June 23, 2008, and Sept 28, 2012, 125 eligible participants were randomly assigned to either sodium thiosulfate (n=61) or observation (n=64). Of these, 104 participants were assessable for the primary endpoint (sodium thiosulfate, n=49; control, n=55). Hearing loss was identified in 14 (28·6%; 95% CI 16·6-43·3) participants in the sodium thiosulfate group compared with 31 (56·4%; 42·3-69·7) in the control group (p=0·00022). Adjusted for stratification variables, the likelihood of hearing loss was significantly lower in the sodium thiosulfate group compared with the control group (odds ratio 0·31, 95% CI 0·13-0·73; p=0·0036). The most common grade 3-4 haematological adverse events reported, irrespective of attribution, were neutropenia (117 [66%] of 177 participant cycles in the sodium thiosulfate group vs 145 [65%] of 223 in the control group), whereas the most common non-haematological adverse event was hypokalaemia (25 [17%] of 147 vs 22 [12%] of 187). Of 194 serious adverse events reported in 26 participants who had received sodium thiosulfate, none were deemed probably or definitely related to sodium thiosulfate; the most common serious adverse event was decreased neutrophil count: 26 episodes in 14 participants.Interpretation: Sodium thiosulfate protects against cisplatin-induced hearing loss in children and is not associated with serious adverse events attributed to its use. Further research is needed to define the appropriate role for sodium thiosulfate among emerging otoprotection strategies.Funding: US National Cancer Institute. [ABSTRACT FROM AUTHOR]

BACKGROUND Follow-up care is critical for childhood cancer survivors (CCS), who are at high risk for comorbidities and late effects of cancer treatments. Understanding the factors associated with maintaining follow-up care is needed, especially for Hispanic CCS, who have been under-represented in previous studies. METHODS Risk factors and protective factors for receiving cancer-related follow-up care were examined among 193 Los Angeles County CCS diagnosed between 2000 and 2007 (54% Hispanic; mean ± standard deviation age, 19.9 ± 2.8 years; age at diagnosis, 12.1 ± 3.0 years; time since diagnosis, 7.8 ± 2.0 years). Self-report surveys were used to assess follow-up care, insurance status, demographics, clinical factors, and psychosocial risk (eg, depression) and protective (eg, self-efficacy [SE]) factors. Multivariable logistic regression was used to identify factors associated with the previous receipt of cancer-related follow-up care (in prior 2 years) and the intent to seek future cancer-related follow-up care. RESULTS Seventy-three percent of CCS reported a cancer follow-up visit in the previous 2 years, which was positively associated ( P < .05) with having health insurance, white ethnicity (vs Hispanic), younger age, and greater treatment intensity. Sixty-nine percent reported an intent to receive follow-up care in the next 2 years, which was positively associated ( P < .05) with having health insurance and greater SE. CONCLUSIONS Hispanics and older CCS were more likely to lack previous follow-up care. Because health insurance was strongly associated with both previous follow-up care and the intent to seek care, the current results indicate that recent changes in health coverage may improve follow-up among CCS. Interventions targeting improved SE may help increase intent to receive follow-up care for this population. Cancer 2015;121:605-613. © 2014 American Cancer Society. [ABSTRACT FROM AUTHOR]

Background: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care.Methods: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis.Results: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being.Conclusions: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care. [ABSTRACT FROM AUTHOR]

Background: Treatment outcomes among survivors of cancer diagnosed during adolescence and early young adulthood have not been characterised independently of survivors of cancers diagnosed during childhood. We aimed to describe chronic health conditions and all-cause and cause-specific mortality among survivors of early-adolescent and young adult cancer.Methods: The Childhood Cancer Survivor Study (CCSS) is a retrospective cohort study with longitudinal follow-up of 5-year survivors diagnosed with cancer before the age of 21 years at 27 academic institutions in the USA and Canada between 1970 and 1999. We evaluated outcomes among survivors of early-adolescent and young adult cancer (aged 15-20 years at diagnosis) and survivors diagnosed at age younger than 15 years (matched on primary cancer diagnosis, including leukaemia, lymphoma, CNS tumours, neuroblastoma, Wilms tumour, soft-tissue sarcomas, and bone cancer) by comparing both groups to siblings of the same age. Mortality was ascertained with the National Death Index. Chronic health conditions were classified with the Common Terminology Criteria for Adverse Events. Standardised mortality ratios (SMRs) were estimated with age-specific, sex-specific, and calendar year-specific US rates. Cox proportional hazard models estimated hazard ratios (HRs) for chronic health conditions and 95% CIs.Findings: Among 5804 early-adolescent and young adult survivors (median age 42 years, IQR 34-50) the SMR compared to the general population for all-cause mortality was 5·9 (95% CI 5·5-6·2) and among 5804 childhood cancer survivors (median age 34 years; 27-42), it was 6·2 (5·8-6·6). Early-adolescent and young adult survivors had lower SMRs for death from health-related causes (ie, conditions that exclude recurrence or progression of the primary cancer and external causes, but include the late effects of cancer therapy) than did childhood cancer survivors (SMR 4·8 [95% CI 4·4-5·1] vs 6·8 [6·2-7·4]), which was primarily evident more than 20 years after cancer diagnosis. Early-adolescent and young adult cancer survivors and childhood cancer survivors were both at greater risk of developing severe and disabling, life-threatening, or fatal (grade 3-5) health conditions than siblings of the same age (HR 4·2 [95% CI 3·7-4·8] for early adolescent and young adult cancer survivors and 5·6 [4·9-6·3] for childhood cancer survivors), and at increased risk of developing grade 3-5 cardiac (4·3 [3·5-5·4] and 5·6 [4·5-7·1]), endocrine (3·9 [2·9-5·1] and 6·4 [5·1-8·0]), and musculoskeletal conditions (6·5 [3·9-11·1] and 8·0 [4·6-14·0]) when compared with siblings of the same age, although all these risks were lower for early-adolescent and young adult survivors than for childhood cancer survivors.Interpretation: Early-adolescent and young adult cancer survivors had higher risks of mortality and severe and life threatening chronic health conditions than the general population. However, early-adolescent and young adult cancer survivors had lower non-recurrent, health-related SMRs and relative risks of developing grade 3-5 chronic health conditions than childhood cancer survivors, by comparison with siblings of the same age, which were most notable more than 20 years after their original cancer. These results highlight the need for long-term screening of both childhood and early-adolescent and young adult cancer survivors.Funding: National Cancer Institute and American Lebanese-Syrian Associated Charities. [ABSTRACT FROM AUTHOR]