Measuring what gets done: Using goal attainment scaling in a vocational counseling program for survivors of childhood cancer.

BACKGROUND: Childhood cancer survivors face education and employment challenges due to physical, cognitive, and psychosocial effects of the disease and treatments, with few established programs to assist them. The objectives of this study were to describe the implementation of Goal Attainment Scaling (GAS) to evaluate an educational and vocational counseling program established for survivors of childhood cancer, and analyze patterns of program engagement and client outcomes, stratified by demographic and diagnostic characteristics. METHODS: A population-based retrospective cohort study of childhood cancer survivors who were engaged with the Pediatric Oncology Group of Ontario's School and Work Transitions Program (SWTP) between January 2015 and December 2018 was utilized. Survivors were followed from SWTP engagement until May 30, 2019 to capture goal attainment. Individual goals were summarized across various demographic, disease, and treatment strata. RESULTS: In total, 470 childhood cancer survivors (median age = 17.9, 58% male) set 4,208 goals in the SWTP during the study period. The mean length of observation was 130.8 weeks (SD = 56.9). Overall, 68% of the goals were achieved. Eighty-three percent of the goals related to further education. Clients diagnosed with a solid tumor set the most goals on average, followed by those with central nervous system tumors and leukemia/lymphoma. CONCLUSIONS: The SWTP assists childhood cancer survivors in realizing their academic and vocational goals. Application of GAS in this setting is a feasible way to evaluate program outcomes. From the volume and breadth of the GAS goals set and achieved, the overall success of the SWTP appears strong.

Comparing Childhood Cancer Care Costs in Two Canadian Provinces.

BACKGROUND: Cancer in children presents unique issues for diagnosis, treatment and survivorship care. Phase-specific comparative cost estimates are important for informing healthcare planning. OBJECTIVE: The aim of this paper is to compare direct medical costs of childhood cancer by phase of care in British Columbia (BC) and Ontario (ON). METHODS: For cancer patients diagnosed at <15 years of age and propensity-score-matched non-cancer controls, we applied standard costing methodology using population-based healthcare administrative data to estimate and compare phase-based costs by province. RESULTS: Phase-specific cancer-attributable costs were 2%-39% higher for ON than for BC. Leukemia pre-diagnosis costs and annual lymphoma continuing care costs were >50% higher in ON. Phase-specific in-patient hospital costs (the major cost category) represented 63%-82% of ON costs, versus 43%-73% of BC costs. Phase-specific diagnostic tests and procedures accounted for 1.0%-3.4% of ON costs and 2.8%-13.0% of BC costs. CONCLUSION: There are substantial cost differences between these two Canadian provinces, BC and ON, possibly identifying opportunities for healthcare planning improvement.

Resource Utilization and Costs in Adolescents Treated for Cancer in Pediatric vs Adult Institutions.

BACKGROUND: Adolescents with cancer can receive care in pediatric or adult institutions. Survival often differs by locus, but little is known about relative health care utilization and costs. We estimated these in a population-based cohort of adolescents. METHODS: All Ontario adolescents (15.0-17.9 years) diagnosed with cancer between 1995 and 2010 were identified from provincial cancer registries. We compared health care resource utilization (hospitalizations, emergency department visits, same-day surgeries, outpatient chemotherapy, radiation, diagnostic/laboratory tests, physician services, home care) and costs (2012 Canadian dollars) during four discrete care phases-prediagnosis (60 days), initial (360 days), continuing (variable), and terminal (360 days)-between adolescents treated in pediatric vs adult institutions, for the whole cohort and within seven diagnostic categories. All statistical tests were two-sided. RESULTS: Of 1356 eligible adolescents, 691 and 665 were treated in adult and pediatric institutions, respectively. Hospitalization rates were higher in pediatric institutions during prediagnosis (14.9% vs 6.9%, P < .001), initial (95.1% vs 73.3%, P < .001), and continuing phases (43.2% vs 34.4%, P = .002), but similar (96.1% vs 96.3%, P = .93) during the terminal phase. Average length of stay was higher at pediatric institutions within most diagnoses and phases. For all diagnoses, median initial phase costs were higher in pediatric than adult institutions (eg, leukemia: $153 926 vs $102 418 per 360 days, P < .001; lymphoma: $65 025 vs $19 846, P < .001, respectively). CONCLUSIONS: The costs of caring for adolescents with the same malignancy are considerably higher in pediatric than adult institutions during most phases. Resource utilization, particularly hospitalization, drives much of the cost difference, making these data applicable to other jurisdictions.

Pseudo cryomapping for ablation of atrioventricular nodal reentry tachycardia: A single center North American experience.

BACKGROUND: Most literature for cryoablation of atrioventricular nodal reentry tachycardia (AVNRT) is based on -30 degree celsius cryomapping with 4 & 6 mm distal electrode catheters. The cryomapping mode is not available on the 6 mm cryocatheter in the United States. We describe a technique for 'pseudo' mapping at -80° using a 6 mm cryocatheter and report on short and long term outcomes. METHODS: A retrospective analysis of all index cases (n = 253) of cryoablation of AVNRT at a single North American institution during the period of 2003-2010 was performed. The majority of cases utilized a 6 mm distal electrode tip catheter. Long term follow up (2.4 ± 1.8 years) was performed via review of the medical record and by questionnaire or telephone if necessary. RESULTS: Acute ablation success was achieved in 93% of cases, with transient conduction defects noted in 39% of cases, and long term conduction defects in 1.6% of cases (4 patients with PR prolongation, 2 of which were permanent). General anesthesia, male gender and presence of structural heart disease were more common in the acute failure cohort. The recurrence rate for AVNRT was 8%. These patients tended to be younger and had more transient A-V conduction defects during the index procedure than those without a recurrence. CONCLUSIONS: In conclusion, anatomic cryoablation of AVNRT utilizing a 6 mm electrode catheter with mapping performed at -80° Celsius is a safe procedure with good long term efficacy. Transient A-V block during the index procedure increases the risk of late recurrence.

The association of QRS duration with atrial fibrillation in a heart failure with preserved ejection fraction population: a pilot study.

BACKGROUND: Heart failure is a significant cause of morbidity and mortality, yet patient risk stratification may be difficult. Prevention or treatment of atrial fibrillation (AF) may be an important strategy in these patients that could positively affect their outcome. It has been demonstrated that in patients with systolic dysfunction, prolonged QRS duration (QRSd), an easily measured electrocardiographic parameter, is associated with AF. HYPOTHESIS: Prolonged QRSd is associated with an increase in prevalence of AF in patients with heart failure with preserved ejection fraction(HFPEF). METHODS: Between February 2006 and February 2009, 718 patients were discharged with a diagnosis of HF from the Dartmouth-Hitchcock Medical Center. Of these, 206 had EF ≥50% by echocardiography performed within 72 hours of admission. After exclusions, 82 patients remained, of which 25 had AF and 57 had sinus rhythm. Characteristics of the AF and sinus-rhythm patients were compared in this pilot study. RESULTS: After adjustment for age, prior diagnosis of HF, and left atrial area, there was a nonsignificant trend (odds ratio: 2.2, 95% CI of 0.3-17.2) for a QRSd >120 ms to be associated with AF. CONCLUSIONS: Similar to results in patients with systolic dysfunction, patients with preserved EF may have an association between a prolonged QRSd and AF.

Costs of cancer care in children and adolescents in Ontario, Canada.

BACKGROUND: Cancer in children and adolescents presents unique issues regarding treatment and survivorship, but few studies have measured economic burden. We estimated health care costs by phase of cancer care, from the public payer perspective, in population-based cohorts. METHODS: Children newly diagnosed at ages 0 days-14.9 years and adolescents newly diagnosed at 15-19.9 years, from January 1, 1995 to June 30, 2010, were identified from Ontario cancer registries, and each matched to three noncancer controls. Data were linked with administrative records describing resource use for cancer and other health care. Total and net (patients minus controls) resource-specific costs ($CAD2012) were estimated using generalized estimating equations for four phases of care: prediagnosis (60 days), initial (360 days), continuing (variable), final (360 days). RESULTS: Mean ages at diagnosis were 6 years for children (N = 4,606) and 17 years for adolescents (N = 2,443). Mean net prediagnosis phase 60-day costs were $6,177 for children and $1,018 for adolescents. Costs for initial, continuing, and final phases were $138,161, $15,756, and $316,303 per 360 days for children, and $62,919, $7,071, and $242,008 for adolescents. The highest initial phase costs were for leukemia patients ($156,225 per 360 days for children and $171,275 for adolescents). The final phase was the most costly ($316,303 per 360 days for children and $242,008 for adolescents). CONCLUSIONS: Costs for children with cancer are much higher than for adolescents and much higher than those reported in adults. Comprehensive population-based long-term estimates of cancer costs are useful for health services planning and cost-effectiveness analysis.

Costs for Childhood and Adolescent Cancer, 90 Days Prediagnosis and 1 Year Postdiagnosis: A Population-Based Study in Ontario, Canada.

BACKGROUND: Childhood and adolescent cancers are uncommon, but they have important economic and health impacts on patients, families, and health care systems. Few studies have measured the economic burden of care for childhood and adolescent cancers. OBJECTIVES: To estimate costs of cancer care in population-based cohorts of children and adolescents from the public payer perspective. METHODS: We identified patients with cancer, aged 91 days to 19 years, diagnosed from 1995 to 2009 using cancer registry data, and matched each to three noncancer controls. Using linked administrative health care records, we estimated total and net resource-specific costs (in 2012 Canadian dollars) during 90 days prediagnosis and 1 year postdiagnosis. RESULTS: Children (≤14 years old) numbered 4,396: 36% had leukemia, 21% central nervous system tumors, 10% lymphoma, and 33% other cancers. Adolescents (15-19 years old) numbered 2,329: 28.9% had lymphoma. Bone and soft tissue sarcoma, germ cell tumor, and thyroid carcinoma each comprised 12% to 13%. Mean net prediagnosis costs were $5,810 and $1,127 and mean net postdiagnosis costs were $136,413 and $62,326 for children and adolescents, respectively; the highest were for leukemia ($157,764 for children and $172,034 for adolescents). In both cohorts, costs were much higher for patients who died within 1 year of diagnosis. Inpatient hospitalization represented 69% to 74% of postdiagnosis costs. CONCLUSIONS: Treating children with cancer is costly, more costly than treating adolescents or adults. Substantial survival gains in children mean that treatment may still be very cost-effective. Comprehensive age-specific population-based cost estimates are essential to reliably assess the cost-effectiveness of cancer care for children and adolescents, and measure health system performance.

Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer.

PURPOSE: The purpose of the present study is to determine predictors of attendance at a network of publicly funded specialized survivor clinics by a population-based cohort of adult survivors of childhood cancer. METHODS: We conducted a retrospective study linking data on eligible patients identified in a provincial pediatric cancer registry with health administrative databases to determine attendance at five specialized survivor clinics in the Canadian province of Ontario between 1999 and 2012. Eligible survivors were treated for cancer at ≤18 years between 1986 and 2005, had survived ≥5 years from their most recent pediatric cancer event, and contributed ≥1 year of follow-up after age 18 years. We assessed the impact of cancer type, treatment intensity, cumulative chemotherapy doses, radiation, socioeconomic status, distance to nearest clinic, and care from a primary care physician (PCP) on attendance using recurrent event multivariable regression. RESULTS: Of 7482 children and adolescents treated for cancer over the study period, 3972 were eligible for study inclusion, of which 3912 successfully linked to administrative health data. After a median of 7.8 years (range 0.2-14.0) of follow-up, 1695/3912 (43.3 %) had attended at least one adult survivor clinic visit. Significantly increased rates of attendance were associated with female gender, higher treatment intensity, radiation, higher alkylating agent exposure, higher socioeconomic status, and an annual exam by a PCP. Distance significantly impacted attendance with survivors living >50 km away less likely to attend than those living within 10 km (relative rate 0.77, p = 0.003). CONCLUSION: Despite free access to survivor clinics, the majority of adult survivors of childhood cancer do not attend. IMPLICATIONS FOR CANCER SURVIVORS: Alternate models of care need to be developed and assessed, particularly for survivors living far from a specialized clinic and those at lower risk of developing late effects.

Non-sustained wide complex tachycardia: an underappreciated sign to aid in diagnosis.

AIMS: The electrocardiographic (ECG) signs used to differentiate ventricular tachycardia (VT) from supraventricular tachycardia (SVT) with aberrancy are specific but not highly sensitive. The purpose of this study was to define the utility of an underappreciated form of atrioventricular (AV) dissociation at the onset of tachycardia, a single dissociated P wave, in the differentiation of non-sustained monomorphic wide complex tachycardia (WCT) in hospitalized patients. METHODS AND RESULTS: We prospectively analysed tracings from 102 consecutive hospitalized patients who had an episode of non-sustained (≥5 beats, <30 s), monomorphic, WCT (≥100 b.p.m.) on telemetry. WCT was classified as VT, SVT with aberrancy, or undifferentiated WCT based on predefined criteria. Of 102 patients with WCT, 3 (3%) had SVT with aberrancy, 43 (42%) had an undifferentiated WCT, and 56 (55%) had VT. ECG evidence of a single dissociated P wave at the onset of tachycardia (i.e. AV dissociation at the onset) was identified in 29 patients (28%) compared with less frequent traditional signs of VT including second-degree ventriculoatrial (VA) block in 18 patients (18%), AV dissociation during tachycardia in 17 patients (17%), fusion beats in 10 patients (10%), and capture beats in 3 patients (3%). On multivariate analysis, only the prematurity index predicted the occurrence of AV dissociation at the onset of the tachycardia (odds ratio 1.239, 95% confidence interval 1.033-1.486, P = 0.021). CONCLUSION: When evaluating WCT in hospitalized patients, a single dissociated P wave at the onset of tachycardia is an easily recognizable diagnostic sign of VT, and is observed more frequently than the other accepted criteria for VT.

Brugada Syndrome Presenting as Polymorphic Ventricular Tachycardia-Ventricular Fibrillation Lasting 94 Seconds Recorded on an Ambulatory Monitor.

IMPORTANCE: Cardiac arrhythmias are common causes of syncope. Brugada syndrome is an uncommon but serious genetic arrhythmia disorder that can be unmasked by medicines causing sodium channel blockade. OBSERVATIONS: This report documents a case of Brugada syndrome and polymorphic ventricular tachycardia-ventricular fibrillation not initially recognized in a patient taking nortriptyline and experiencing syncope. It also illustrates one of the longest episodes of ventricular fibrillation recorded on an ambulatory monitor (94 seconds). Although the baseline electrocardiogram did not demonstrate a typical appearance for Brugada syndrome, provocative testing with flecainide in this patient with documented polymorphic ventricular tachycardia revealed a Brugada electrocardiogram pattern. CONCLUSIONS AND RELEVANCE: Vigilance should be maintained for arrhythmia substrates such as Brugada syndrome in patients with typical symptoms when they are prescribed membrane-active medicines. Long-term ambulatory rhythm monitors can provide useful information in these cases, especially when symptoms are infrequent.

Tricuspid Regurgitation Following Implantation of Endocardial Leads: Incidence and Predictors.

BACKGROUND: Endocardial leads, permanent pacemaker (PPM), or implantable cardioverter defibrillator (ICD) placed across the tricuspid valve can lead to tricuspid regurgitation (TR). The reported incidence of this complication has varied widely. There are limited data predicting which patients will develop this complication. This study sought to describe the incidence of worsening TR post-PPM or ICD and to identify patient-specific predictors of increased TR following lead placement. METHODS: Patients (N = 382) who received a PPM or ICD from January 1, 2006 to December 31, 2010 and had echocardiograms both within 365 days prior to and up to 1,200 days after device placement were studied. TR was assessed on a 6-point scale (none/trace, mild, mild to moderate, moderate, moderate to severe, severe). Primary outcome was a two-grade increase in the severity of TR. Echocardiographic and clinical predictors of worsening TR were examined using multivariate regression. RESULTS: A two-grade increase in TR occurred in 10.0% of our patient population. Age, lead position, atrial fibrillation, right atrial (RA) area, right ventricular systolic pressure (RVSP), left atrial area, and severity of mitral regurgitation were univariate predictors of worsening TR post lead placement. In the multivariate analysis, predevice RA area and RVSP were associated with increased TR after endocardial lead placement. Percentage of time spent pacing did not appear to be associated with increased TR. CONCLUSION: The incidence of increased TR postendocardial lead placement was 10.0%; this is lower than prior estimates. Predevice RA area and RVSP are predictors of increased TR after lead placement.

Subsequent Malignant Neoplasms in a Population-Based Cohort of Pediatric Cancer Patients: A Focus on the First 5 Years.

BACKGROUND: The purpose was to describe the development of subsequent malignant neoplasms (SMN) among a population-based cohort of pediatric cancer patients, with a focus on SMNs that occurred within the first 5 years from diagnosis. METHODS: The cohort was identified from POGONIS, an active provincial registry. Cohort members were Ontario residents ages 0 to 14.9 years at primary diagnosis between January 1985 and December 2008. SMNs that developed <18 years were captured by POGONIS, whereas SMNs diagnosed later were identified through linkage. Cumulative incidence and standardized incidence ratios (SIR) were calculated, and proportional hazards models were estimated to examine factors associated with SMN development. RESULTS: A total of 7,920 patients were eligible. 2.4% (188/7,920) developed 197 SMNs. Mean follow-up time was 10.7 years (SD = 7.6 years; range, 0.0-26.4 years) with mean time to SMN of 8.5 years (SD = 6.3 years; range, 0.0-24.9 years). The SIR for the development of a SMN was 9.9 [95% confidence interval (CI), 8.6-11.4]. 40.6% of SMNs (80/197) developed within 5 years. Early SMNs were more likely to be leukemia and lymphoma. Factors associated with early SMN were primary diagnosis of a bone tumor (OR, 4.88; 95% CI, 1.52-15.60), exposure to radiotherapy (OR, 1.82; 95% CI, 1.02-3.22), and the highest dose of epipodophyllotoxin (OR, 3.74; 95% CI, 1.88-7.42). CONCLUSIONS: Over 40% of SMNs diagnosed in childhood cancer patients occurred in the first 5 years after diagnosis, suggesting a need for early and ongoing surveillance. IMPACT: The early development of certain SMNs reinforces the need for early and continued surveillance at all stages for pediatric cancer patients.

Identifying Predictors of Longitudinal Decline in the Level of Medical Care Received by Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study.

OBJECTIVES: Characterize longitudinal changes in the use of medical care in adult survivors of childhood cancer. DATA SOURCES: The Childhood Cancer Survivor Study, a retrospective cohort study of 5+ year survivors of childhood cancer. STUDY DESIGN: Medical care was assessed at entry into the cohort (baseline) and at most recent questionnaire completion. Care at each time point was classified as no care, general care, or survivor-focused care. DATA COLLECTION: There were 6,176 eligible survivors. Multivariable models evaluated risk factors for reporting survivor-focused care or general medical care at baseline and no care at follow-up; and survivor-focused care at baseline and general care at follow-up. PRINCIPAL FINDINGS: Males (RR, 2.3; 95 percent CI 1.8-2.9), earning <$20,000/year (RR, 1.6; 95 percent CI 1.2-2.3) or ≤ high school education (RR, 2.5; 95 percent CI 1.6-3.8 and RR 2.0; 95 percent CI 1.5-2.7 for

The development of scales to measure childhood cancer survivors' readiness for transition to long-term follow-up care as adults.

PURPOSE: To develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult-oriented long-term follow-up (LTFU) care. METHODS: Qualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self-management skills and expectations about adult care. These scales were field-tested in a sample of 250 survivors aged 15-26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted. RESULTS: RMT led to the refinement of a 6-item Cancer Worry scale (focused on worry about cancer-related issues such as late effects), a 15-item Self-Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12-item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test-retest reliability ≥ 0.85). CONCLUSION: There is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care.

The Initiative to Maximize Progress in Adolescent and Young Adult Cancer Therapy (IMPACT) Cohort Study: a population-based cohort of young Canadians with cancer.

BACKGROUND: Cancer is the leading cause of disease-related death in adolescents and young adults (AYA). Annual improvements in AYA cancer survival have been inferior to those observed in children and older adults. Prior studies of AYA with cancer have been limited by their focus on patients from select treatment centres, reducing generalizability, or by being population-based but lacking diagnostic and treatment details. There is a critical need to conduct population-based studies that capture detailed patient, disease, treatment and system-level data on all AYA regardless of treatment location. METHODS/DESIGN: We will create a cohort of all AYA (aged 15-21 years) at the time of diagnosis with any malignancy between 1992 and 2011 in Ontario, Canada (n = 5,394). Subjects will be identified through the Ontario Cancer Registry and the final cohort will be expanded to include 2012 diagnoses, as these data become available. Detailed diagnostic, treatment and outcome data for those patients treated at a pediatric cancer centre will be provided by a population-based pediatric cancer registry (n = 1,030). For 15-18 year olds treated at adult centres (n = 923) and all 19-21 year olds (n = 3396), trained abstractors will collect the comparable data elements from medical records. We will link these data to population-based administrative health data that include physician billings, hospitalizations and emergency room visits. This will allow descriptions of health care access and use prior to cancer diagnosis, and during and after treatment. DISCUSSION: The IMPACT cohort will serve as a platform for addressing questions that span the AYA cancer journey. These will include determining which factors influence where AYA receive care, the impact of locus of care on the types and intensity of cancer therapy, appropriateness of surveillance for disease recurrence, access to clinical trials, and receipt of palliative and survivor care. Findings using the IMPACT cohort have the potential to lead to changes in practice and cancer policy, reduce mortality, and improve quality of life for AYA with cancer. The IMPACT data platform will be a permanent resource, accessible to researchers across Canada.

Influence of length of time to diagnosis and treatment on the survival of children with acute lymphoblastic leukemia: a population-based study.

The objectives were to describe times to diagnosis and initiation of treatment in pediatric ALL in Ontario from 1997 to 2007, and to measure their impact on OS and EFS. In 1000 children, the median times to diagnosis and treatment were both 1 day (IQR = 1-2). Those who began treatment >3 days after diagnosis had inferior OS (AHR = 2.49; 95% CI = 1.40-4.43; p = 0.002), and inferior EFS (AHR = 1.73; 95% CI = 1.01-2.96; p = 0.047) compared to those who began treatment ≤ 3 days after diagnosis. There was no statistically significant relationship between time to diagnosis and survival. Longer time to treatment was associated with worse survival in pediatric ALL; reasons for this relationship may be multi-factorial.

Measuring the quality of a childhood cancer care delivery system: assessing stakeholder agreement.

OBJECTIVES: We described previously the development of a set of quality indicators (QIs) of a childhood cancer system in Ontario, Canada. The purpose of this study was to determine the acceptability of the proposed set of QIs among stakeholders of the childhood cancer system. METHODS: A modified Delphi method was used to assess stakeholder agreement on the value of the proposed QIs. A QI evaluation survey was mailed to a stakeholder group of 23 multidisciplinary health care providers, survivors, parents, and policymakers who rated each QI on specific criteria. Prior to an in-person consensus meeting, the distribution of scores was provided to panel members. At the meeting, QIs were reevaluated and discussed in three successive rounds. QIs with 80% or more of panel agreement were considered endorsed. RESULTS: Overall, 20 QIs were endorsed by the panel, measuring all seven quality dimensions of Ontario's Cancer System Quality Index framework. Five QIs were endorsed by 100% of the panel as follows: Five-year event-free survival, chemotherapy admission delay, drug availability, sufficient multidisciplinary staff, and parent satisfaction. Although none of the QIs relating to end-of-life or Satellite care were endorsed, panel members emphasized the need to measure these components of the system. CONCLUSIONS: Standardized implementation of the 20 pediatric cancer QIs endorsed by the multidisciplinary stakeholder panel will provide ongoing monitoring of various dimensions of system quality and the development of benchmarks over time, greatly augmenting the ability to identify needed system improvements across populations and jurisdictions.

Measuring the quality of a childhood cancer care delivery system: quality indicator development.

OBJECTIVES: A set of indicators to assess the quality of a childhood cancer system has not been identified in any jurisdiction internationally, despite the movement toward increased accountability and provision of high-quality care with limited health care resources. This study was conducted to develop a set of quality indicators (QIs) of a childhood cancer control and health care delivery system in Ontario, Canada. METHODS: A systematic review and targeted gray literature search were conducted to identify potential childhood cancer QIs. A series of investigator focus group sessions followed to review all QIs identified in the literature, and to generate a provisional QI set for a childhood cancer system. QIs were evaluated by three content experts in a sequential selection process on the basis of a series of criteria to select a subset for presentation to stakeholders. Following an appraisal of the relevance of quality assessment frameworks, remaining QIs were mapped onto the Cancer System Quality Index framework. RESULTS: The systematic review yielded few relevant childhood cancer system QIs. Overall, 120 provisional QIs were developed by the investigator group. Based on median QI rating scores, representation across the childhood cancer continuum, and feasibility of data collection, a subset of 33 QIs was selected for stakeholder consideration. CONCLUSIONS: The subset of 33 QIs developed on the basis of a systematic literature review and consensus provides the basis for the selection of a set of QIs for ongoing, standardized monitoring of various dimensions of quality in a childhood cancer system.

Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors.

PURPOSE: Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics. METHODS: Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. RESULTS: Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience). CONCLUSIONS: Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.