Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study.

PURPOSE: Risk-stratified life-long follow-up care is recommended for adult childhood cancer survivors (CCS) to ensure appropriate prevention, screening, and management of late effects. The identification of barriers to long-term follow-up (LTFU), particularly in varying healthcare service contexts, is essential to develop and refine services that are responsive to survivor needs. We aimed to explore CCS and healthcare professionals (HCP) perspectives of healthcare system factors that function as barriers to LTFU in British Columbia, Canada. METHODS: We analyzed data from 43 in-depth interviews, 30 with CCS and 13 with HCP, using qualitative thematic analysis and constant comparative methods. RESULTS: Barriers to accessible, comprehensive, quality LTFU were associated with the following: (1) the difficult and abrupt transition from pediatric to adult health services, (2) inconvenient and under-resourced health services, (3) shifting patient-HCP relationships, (4) family doctor inadequate experience with late effects management, and (5) overdue and insufficient late effects communication with CCS. CONCLUSIONS: Structural, informational, and interpersonal/relational healthcare system factors often prevent CCS from initially accessing LTFU after discharge from pediatric oncology programs as well as adversely affecting engagement in ongoing screening, surveillance, and management of late effects. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the issues faced by adult CCS will provide insight necessary to developing patient-centered healthcare solutions that are key to accessible, acceptable, appropriate, and effective healthcare.

Associating Physical Activity Levels with Motor Performance and Physical Function in Childhood Survivors of Acute Lymphoblastic Leukemia.

Purpose: This cross-sectional, observational study investigated whether physical activity (PA) levels are associated with motor performance and physical function in children after treatment for acute lymphoblastic leukemia (ALL). Method: Participants aged 8-13 years who had completed treatment for ALL (3-36 months post-treatment) were tested at their oncology long-term follow-up appointment at the British Columbia Children's Hospital. PA level was measured using the Physical Activity Questionnaire for Older Children (PAQ-C). Motor performance was measured using the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition, Short Form (BOT-2 SF), and physical function was measured using the 6-minute walk test (6MWT). Results: Thirteen children completed testing. PAQ-C scores were not associated with BOT-2 SF or 6MWT performance. Eleven children (85%) performed below the norm for the 6MWT. Children with elevated body mass index had poorer 6MWT but similar PAQ-C scores. Conclusion: PA was not found to be associated with motor performance and physical function. Participants who were overweight or obese had poorer 6MWT performance, which may indicate the need for closer monitoring of post-treatment weight status and physical function in the oncology follow-up setting.

Objectif : cette étude observationnelle à méthodologie transversale portait sur le lien potentiel entre le niveau d'activité physique (AP) et la capacité motrice et physique des enfants ayant reçu un traitement contre la leucémie lymphoblastique aiguë (LLA). Méthode : des participants âgés de 8 à 13 ans ayant reçu un traitement contre la LLA (de 3 à 36 mois après le traitement) ont été évalués lors de leur rendez-vous de suivi à long terme en oncologie au British Columbia Children's Hospital. Le niveau d'AP a été mesuré à l'aide du Questionnaire de mesure de l'activité physique chez les enfants (PAQ-C). La capacité motrice a été mesurée à l'aide du Bruininks-Oseretsky Test of Motor Proficiency, Deuxième édition, Formulaire court (BOT-2 SF) et la capacité physique a été mesurée à l'aide du test de marche de 6 minutes (6MWT). Résultats : treize enfants ont effectué les tests. Aucun lien n'a été observé entre les scores du PAQ-C et les résultats du BOT-2 SF ni ceux du 6MWT. Onze enfants (85 %) ont obtenu un résultat inférieur à la norme au 6MWT. Les enfants ayant un indice de masse corporelle élevé ont obtenu des résultats plus faibles au 6MWT, mais des résultats similaires au PAQ-C. Conclusion : le niveau d'AP ne semble pas avoir de lien avec la capacité motrice ou physique. Les participants en surpoids et obèses ont obtenu des résultats plus faibles au 6MWT, ce qui peut indiquer un besoin de surveillance plus étroit du poids et de la capacité physique après le traitement lors des rendez-vous de suivi en oncologie.

Clinical Practice Recommendations for the Management and Prevention of Cisplatin-Induced Hearing Loss Using Pharmacogenetic Markers.

Currently no pharmacogenomics-based criteria exist to guide clinicians in identifying individuals who are at risk of hearing loss from cisplatin-based chemotherapy. This review summarizes findings from pharmacogenomic studies that report genetic polymorphisms associated with cisplatin-induced hearing loss and aims to (1) provide up-to-date information on new developments in the field, (2) provide recommendations for the use of pharmacogenetic testing in the prevention, assessment, and management of cisplatin-induced hearing loss in children and adults, and (3) identify knowledge gaps to direct and prioritize future research. These practice recommendations for pharmacogenetic testing in the context of cisplatin-induced hearing loss reflect a review and evaluation of recent literature, and are designed to assist clinicians in providing optimal clinical care for patients receiving cisplatin-based chemotherapy.

Testicular Biopsy for Fertility Preservation in Prepubertal Boys with Cancer: Identifying Preferences for Procedure and Reactions to Disclosure Practices.

PURPOSE: Fertility preservation options are limited in prepubertal boys with cancer. Worldwide there has been growing interest in testicular tissue cryopreservation as a promising experimental strategy to address future infertility. We measured and compared parent, male cancer survivor and provider willingness to accept the risk of testicular biopsy among prepubertal boys with cancer, and identified reactions to disclosure practices. MATERIALS AND METHODS: We conducted a multicenter study that included 153 parents of prepubertal boys with cancer, 77 male survivors of childhood cancer and 30 oncology providers. The threshold technique was used to measure subject relative willingness to accept risk of testicular biopsy under 4 different aspects of care, ie chance of infertility, complications from biopsy, development of technology to use tissue and tissue storage cost. A total of 47 in-depth interviews were conducted to identify reactions to disclosure practices. RESULTS: A total of 52 survivors (67%), 22 providers (73%) and 110 parents (72%) selected to have testicular biopsy (vs no biopsy). Median minimum infertility risk to make biopsy worthwhile varied from 25% to 30% among the 3 respondent groups. Interviews revealed that some providers would not offer biopsy in cases of greater perceived risk than benefit, that parents preferred having information regardless of risk of infertility and that nondisclosure elicited adverse feelings from some parents. CONCLUSIONS: Parents, survivors and providers were willing to accept risk of prepubertal testicular biopsy. Parental/survivor desire for information and provider decision not to disclose suggest that barriers to information delivery need to be addressed.

Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved.

PURPOSE: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges. METHODS: Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods. RESULTS: The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way. CONCLUSIONS: Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement. IMPLICATIONS FOR CANCER SURVIVORS: This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.

Trajectories of social isolation in adult survivors of childhood cancer.

PURPOSE: Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. METHODS: Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. RESULTS: Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. CONCLUSIONS: Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. IMPLICATIONS FOR CANCER SURVIVORS: Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.

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.

Palliative care in adolescents and young adults with cancer.

Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11-13, 2010;117:-. Recommendations were as follows: Develop a specific AYA screening tool designed to detect increased anxiety or new symptoms and to initiate discussion about palliative or symptom care; Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation; Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death; Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible and can work in both pediatric and adult facilities, and are able to work in a "virtual" environment to support patients being cared for at home; Improve physical facilities in hospices and hospitals to meet the distinctive needs of terminally ill AYA patients; Enhance support for palliative care at home by: changing legislation to improve Compassionate Care Benefits and developing "virtual palliative care support teams". Adequate provision of AYA palliative care and symptom management services will likely confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers.

Hospital-related morbidity among childhood cancer survivors in British Columbia, Canada: report of the childhood, adolescent, young adult cancer survivors (CAYACS) program.

Our study examines inpatient, hospital-related morbidity in a geographically-defined cohort of long-term cancer survivors diagnosed before age 20 years in the province of British Columbia (BC), Canada. A total of 1374 survivors diagnosed from 1981 to 1995 surviving at least 5-years postdiagnosis, and a matched sample of 13,740 BC residents, were identified from population registers, and linked to provincial hospitalization records from 1986 to 2000. Logistic regression was used to assess relative risk and effect of sociodemographic, clinical, and temporal factors on risk. Approximately 41% of survivors vs. 17% of the population sample had at least one type of hospitalization-related late morbidity in the observation period (adjusted RR 4.1, 95% CI 3.7-4.5). Those at highest risk were survivors of leukemia (RR 4.8, 95% CI 4.0-5.8), central nervous system tumors (RR 4.8, 95% CI 4.0-5.8), bone and soft tissue sarcomas (RR 4.9, 95% CI 3.8-6.2), and kidney cancer (RR 4.9, 95% CI 3.4-7.0). Adjusted relative risk was elevated for all types of morbidity except pregnancy and birth complications, and highest for neoplasms (including second primary cancers) (RR 21.7, 95% CI 16.3-28.7). Morbidity was elevated for all combinations of primary treatment and highest for those with previous radiation, chemotherapy, and surgery (RR 7.1, 95% CI 5.5-9.0). Over time, morbidity for late effects other than neoplasms became more prevalent. These results suggest that survivors are at increased ongoing risk of many types of hospital-related late morbidity, implying that long-term monitoring for multiple health problems is warranted.

Quality of life during active treatment for pediatric acute lymphoblastic leukemia.

The objectives of the study were to describe quality of life (QoL), identify predictors of worse QoL and examine QoL during different phases of active therapy for acute lymphoblastic leukemia (ALL). A multiinstitutional cross-sectional study was performed in children with ALL. We included children at least 2 months from diagnosis who were receiving treatment in first remission. Parents described QoL using the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Acute Cancer Module. The 206 children on treatment for ALL had overall [median 62.5, 95% confidence interval (CI) 34.8-94.4], physical (median 62.5, 95% CI 18.8-100.0) and psychosocial (median 65.4, 95% CI 38.3-94.2) summary scores that were one to two standard deviations lower than population norms. In high-risk ALL, girls and older children had worse QoL. In standard-risk ALL, those with lower household incomes and unmarried parents had worse QoL. QoL scores were generally constant across phases of ALL therapy. Children on therapy for ALL have lower QoL compared to healthy children. Age and gender predicted QoL in high-risk ALL, whereas socioeconomics predicted QoL in standard-risk ALL. Future efforts should focus on longitudinal studies that describe QoL over time within individual patients.

Hospitalisations 1998-2000 in a British Columbia population-based cohort of young cancer survivors: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Research Program.

BACKGROUND AND OBJECTIVES: Because of late effects among survivors of cancer in young people, increased hospitalisations would be expected. This study determined the occurrence, frequency and days in hospital (DIH) of hospital admissions among 5-year survivors of childhood and adolescent cancer diagnosed in British Columbia (BC), compared hospitalisation risk with the general population and examined the impact of sociodemographic, health care system and clinical factors. DESIGN: This population-based study frequency matched 1157 survivors of cancer diagnosed before 20 years of age from 1970 to 1992 from the BC Cancer Registry with 11,570 randomly selected individuals from BC's health insurance plan Client Registry. Administrative hospitalisation records from 1998 to 2000 were linked to study cohorts, and regression and trend analyses were carried out. RESULTS: From 1998 to 2000, 240 (21%) of survivors and 614 (5.3%) of the population sample were admitted to hospital at least once [adjusted OR=4.36 (95% CI 3.68-5.16)]. Hospitalised survivors had a higher average number of admissions (2.0 versus 1.5 admissions, respectively) and longer mean DIH (10.9 versus 7.8d, respectively) than hospitalised population controls. Female gender and older age increased the risk of hospitalisation, as did the presence of a relapse or second cancer by 5 years post-diagnosis. CONCLUSION: Our cohort of child and adolescent cancer survivors had higher odds of hospitalisation, more admissions among those hospitalised and longer stay in hospital compared to the population sample. This has implications for health care system resources and appropriate management of late effects of survivors.

Caregiving demands in parents of children with cancer: psychometric validation of the Care of My Child with Cancer questionnaire.

A comprehensive evaluation of the psychometric properties of Care of My Child With Cancer (CMCC) was performed in a sample of 411 parents of children undergoing treatment of cancer at five Canadian pediatric oncology centers. Psychometric tests used to assess data quality, targeting, reliability, and construct validity demonstrated that the CMCC is a scientific sound measure. The CMCC will be helpful for assessing increasing parental responsibility for caregiving tasks associated with cancer care.

Childhood, adolescent, and young adult cancer survivors research program of British Columbia: objectives, study design, and cohort characteristics.

BACKGROUND: The Childhood, Adolescent, and Young Adult Cancer Survivors Research Program (CAYACS) has been established in the province of British Columbia (BC), Canada, to carry out research into late effects and survivor care in multiple domains, and to inform policy and practice. PROCEDURE: This program identifies a survivor cohort and comparison groups from population-based registries and links their records to population-based files of outcomes and outcome determinants, to create a research database and conduct studies of long-term outcomes and care. RESULTS: The initial cohort consisted of all 5-year survivors of cancer or a tumor diagnosed under age 25 years from 1970 to 1995, who were residents in BC at the time of diagnosis, and followed till 2000 (3,841 subjects). Seven percent have died, and 77% have treatment information available. Data on death and second cancer occurring in BC are available. Late morbidity and healthcare utilization information is available for 68% of survivors (79% of those diagnosed from 1981). Education outcomes are available for 71% of those born during 1978-1995 and diagnosed under age 15 years. CONCLUSIONS: Use of registries, administrative databases, and record linkage methodologies is a cost-effective and comprehensive means to conduct survivorship research. This program should add to knowledge of risks of late effects and impacts on care, inform development of strategies to manage risks, evaluate the effects of surveillance and interventions, and assess new risks as the cohort ages, more recent survivors enter the cohort, and treatments change.

Factors affecting the delivery of family-centered care in pediatric oncology.

BACKGROUND: The provision of family-centered care (FCC) emphasizes a partnership between parents and health-care providers so that families are involved in every aspect of services for their child. Our study examines factors related to parental perception of the family-centeredness of pediatric oncology services. PROCEDURE: This Canadian multi-institutional cross-sectional study included children with cancer receiving active treatment. One parent from each family provided information about the child, parent/family demographics, diagnosis, and treatment. FCC was measured with the MPOC-20, a valid and reliable tool in the pediatric oncology setting that consists of two subscales: "Family-Centered Service" and "Providing General Information." Logistic multiple regression analyses were used to identify factors that were associated with lower ratings of FCC for each subscale. RESULTS: Completed questionnaires were received back from 411 parents, giving an overall response rate of 80%. Worse perceived prognosis and worse parental psychosocial health were associated with less favorable ratings for both MPOC-20 subscales. In addition, parents who were not married or living common-law scored lower ratings for the Family-Centered Services subscale, whereas scores for the Provision of General Information subscale differed depending on the treatment facility at which the child received care. CONCLUSIONS: Our study identified child/parent factors and health-care delivery factors associated with FCC provided in the pediatric oncology setting. These results could be used as the starting point for future research looking at optimization of the FCC process.

Educational outcomes among survivors of childhood cancer in British Columbia, Canada: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Program.

BACKGROUND: Increased survival of patients with childhood cancer has resulted in a growing population of survivors within the education system, many of whom may experience educational difficulties. The current study provides a comprehensive assessment of survivors' educational achievements. METHODS: Seven hundred eighty-two childhood cancer survivors from the British Columbia (BC) Cancer Registry who attended BC schools from 1995 to 2004, were compared with a randomly selected comparison group of 8386 BC school children. Grade repetition, standard Foundation Skills Assessments (FSA), graduation-year examinations, and special education designations were compared, and factors that affected survivors' educational outcomes were identified. RESULTS: Survivors of central nervous system tumors had statistically significant FSA deficits in numeracy and reading (adjusted odds ratios from 0.2 to 0.5 in various grades); leukemia survivors also had lower FSA scores, although most differences were not statistically significant. Other survivors demonstrated no significant differences in FSA scores. Survivors were significantly more likely than controls to receive special education (32.5% vs 14.1%). Females and those who had received radiation treatment (particularly cranial radiation) were at increased risk for poor educational outcomes. CONCLUSIONS: The current results have implications for the management of survivors in the education system to maximize their educational experience.

Parental optimism in poor prognosis pediatric cancers.

OBJECTIVE: The objectives were to describe parent-rated and physician-rated prognosis in a wide range of pediatric cancers and to describe the prevalence and predictors of parental prognostic optimism in poor prognosis pediatric cancer patients. METHODS: This Canadian multi-institutional cross-sectional study included children with cancer receiving any type of active treatment. The primary caregiver rated child prognosis on a 5-point categorical rating scale. For each child, five pediatric oncologists rated prognosis according to child- and disease-related characteristics. RESULTS: Of the 395 included families, 42 (10.6%) of parents rated prognosis as excellent or very good for children in whom physicians rated prognosis as poor. In multiple regression analysis, in comparison to parents of children with leukemia and lymphoma, parents of children with solid tumors (odds ratio (OR) 11.3, 95% CI 4.6, 27.8; P=0.0009) and brain tumors (OR 7.5, 95% CI 2.7, 21.1; P=0.09), parents of children with relapsed disease (OR 10.7, 95% CI 3.6, 31.3; P<0.0001) and parents with greater dispositional optimism (OR 1.1, 95% CI 1.0, 1.2; P=0.008) were more likely to have optimistic prognostic estimates in the setting of physician-rated poor prognosis. CONCLUSION: Approximately 10% of parents have optimistic prognostic estimates in the setting of physician-rated poor prognosis. Families of children with solid tumors and relapsed cancer and parents who were more optimistic were more likely to be optimistic in the poor prognosis setting. More research is needed to understand the impact of such discrepancies in prognosis on processes and outcomes.

Impact of caring for a child with cancer on parents' health-related quality of life.

PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND METHODS: A total of 411 respondents of 513 eligible parents were recruited from five pediatric oncology centers in Canada between November 2004 and February 2007. Parents were asked to complete a questionnaire booklet that included a measure of adult QOL (SF-36), a measure of child health status (functional status IIR), and questions to assess health-promoting self-care actions (eg, sleep, diet, and exercise habits) and characteristics of the child with cancer (eg, relapse status, time since diagnosis, prognosis, treatment intensity). RESULTS: Compared with population norms, parents of children with cancer reported poorer physical and psychosocial QOL in all psychosocial domains (effect sizes range, -0.71 to -1.58) and in most physical health domains (effect sizes range, -0.08 to -0.63). Parent characteristics associated with better parental QOL included better eating, exercise and sleep habits, younger age, and higher income. Child characteristics associated with better parental QOL included better child health status (functional status IIR scores), lower treatment intensity, and longer time since diagnosis. CONCLUSION: Parents of children with cancer report poorer QOL compared with population norms. Interventions directed at parents should be included as part of the treatment plan for a child with cancer. Modifiable variables associated with poorer parental QOL, such as sleep quality and diet and exercise habits, indicate those parents most likely to experience poor QOL and may be potential areas for intervention.

Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being.

GOAL OF WORK: This paper describes a literature review conducted to identify important factors that have been investigated as explanations of variability in the health and well-being of parents of children with cancer. Our purpose was to build a literature base that could be used to guide and direct future research. MATERIALS AND METHODS: Medline, Cinahl, EMBASE, PsycINFO, and Sociological Abstracts were searched from 1980 to 2005 using the keywords neoplasms; child(ren) aged 0-18 years; parent(s), caregiver(s), mother(s), or father(s). For papers that met the study inclusion criteria, sample characteristics and information about factors related to caregiver health, or the relationship between such factors, were extracted. The findings were organized according to the six main constructs that form the caregiving process and caregiver burden model: background/context variables; child characteristics; caregiver strain; self-perception; coping factors; and caregiver physical and psychological health. MAIN RESULTS: Articles meeting the inclusion criteria totaled 57. We found substantial research showing that certain child characteristics (e.g., child behavior; time since diagnosis) and indicators of coping (e.g., family cohesion, social support, stress management) are related to parental psychological health. Other aspects of the caregiving process (e.g., parental self-perception, family-centered care, and physical health) have received less research attention. CONCLUSION: Various limitations and gaps in the current literature were identified in our review. Future research to understand the complex interrelationships between factors involved in the caregiving process should examine hypotheses that are guided by a theoretical framework and tested using advanced statistical techniques.

A stress echocardiography study of cardiac function during progressive exercise in pediatric oncology patients treated with anthracyclines.

BACKGROUND: Anthracycline-treated patients (AP) are at risk for cardiac dysfunction years after treatment. Cardiac function has not been evaluated during exercise in AP. The purpose of this study was to assess exercise tolerance, left ventricular (LV) function, and hemodynamics during progressive exercise. PROCEDURE: We studied 47 AP (cumulative dose: 36-504 mg/m(2)) who were in complete remission and 12 healthy controls (CON). AP were further grouped by cumulative dose (LOW or= 260 mg/m(2)) and resting echocardiographic function. All subjects performed 3-min incremental stages on a semi-recumbent cycle ergometer until volitional fatigue. Using echocardiography and Doppler, LV dimensions, posterior wall thickness (LVPWs), peak aortic velocity (PAoV), shortening fraction (SF), rate-corrected mean velocity of fiber shortening (MVCFc), wall stress at peak systole (sigmaPS), stroke volume index (SVI), and cardiac index (CI) were determined. Measurements were performed at rest, during each stage of exercise, and in recovery. RESULTS: AP did less work than CON (P < 0.050). CON and LOW had similar resting function, while HIGH had a lower SF and MVCFc (P < 0.050) and a higher sigmaPS (P < 0.001). Resting SVI and CI were also lower in HIGH. At peak exercise, MVCFc and sigmaPS remained different in HIGH, and both AP groups had a lower SF, SVI, and CI (P < 0.001). AP had an abnormal SVI response to exercise. AP showed a smaller initial increase in SVI that was not maintained throughout exercise. CONCLUSIONS: AP have reduced exercise tolerance. There also appears to be a dose-related effect on myocardial contractility and SVI. These findings may help to guide treatment.

Role of plasma lipids and lipoproteins in predicting amphotericin B-induced nephrotoxicity in pediatric oncology patients.

PURPOSE: The objective of this study was to determine if total plasma and lipoprotein cholesterol (C) and triglyceride (TG) concentrations could predict the degree of nephrotoxicity caused by the antifungal agent amphotericin B (AmpB); and to use the average amount of potassium supplementation received daily as a indicator of nephrotoxicity in pediatric oncology patients. PATIENTS AND METHODS: Plasma samples from 18 patients (ages < 17 years) who were receiving AmpB due to suspected or confirmed fungal infection at British Columbia Children's Hospital were analyzed for lipid concentrations. The high density lipoprotein (HDL) fractions were separated by precipitation; total (TOT) plasma and fraction C and TG concentrations were measured by enzymatic colorimetric assays; and low density lipoprotein (LDL) C levels were determined by Friedewald's formula. Changes in serum creatinine levels from baseline and amounts of potassium supplementation were used as indicators of nephrotoxicity; both were obtained from patients' medical charts. Pearson correlation coefficients (r) were determined and considered significant if P < 0.05. RESULTS: The total cumulative AmpB dose, adjusted for weight, does not seem to predict AmpB-induced nephrotoxicity. Positive but relatively weak correlations were found between total potassium supplementation and LDL C (r = 0.489, P < 0.02); and TOT C (r = 0.551, P < 0.01). In addition, a positive but relatively weak correlation between the average amount of potassium supplementation per day above baseline and HDL C (r = 0.407; P < 0.02) was observed. CONCLUSION: Differences in total plasma and LDL cholesterol concentrations may be used as predictors of AmpB-induced nephrotoxicity in pediatric oncology patients.