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1.
Cancer Med ; 13(7): e6966, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38572962

ABSTRACT

OBJECTIVE: Examine the influence of household income on health-related quality of life (HRQOL) among children with newly diagnosed acute myeloid leukemia (AML). DESIGN: Secondary analysis of data prospectively collected from pediatric patients receiving treatment for AML at 14 hospitals across the United States. EXPOSURE: Household income was self-reported on a demographic survey. The examined mediators included the acuity of presentation and treatment toxicity. OUTCOME: Caregiver proxy reported assessment of patient HRQOL from the Peds QL 4.0 survey. RESULT: Children with AML (n = 131) and caregivers were prospectively enrolled to complete PedsQL assessments. HRQOL scores were better for patients in the lowest versus highest income category (mean ± SD: 76.0 ± 14 household income <$25,000 vs. 59.9 ± 17 income ≥$75,000; adjusted mean difference: 11.2, 95% CI: 2.2-20.2). Seven percent of enrolled patients presented with high acuity (ICU-level care in the first 72 h), and 16% had high toxicity (any ICU-level care); there were no identifiable differences by income, refuting mediating roles in the association between income and HRQOL. Enrolled patients were less likely to be Black/African American (9.9% vs. 22.2%), more likely to be privately insured (50.4% vs. 40.7%), and more likely to have been treated on a clinical trial (26.7% vs. 18.5%) compared to eligible unenrolled patients not enrolled. Evaluations of potential selection bias on the association between income and HRQOL suggested differences in HRQOL may be smaller than observed or even in the opposing direction. CONCLUSIONS: While primary analyses suggested lower household income was associated with superior HRQOL, differential participation may have biased these results. Future studies should partner with patients/families to identify strategies for equitable participation in clinical research.


Subject(s)
Health Equity , Leukemia, Myeloid, Acute , Child , Humans , Leukemia, Myeloid, Acute/epidemiology , Leukemia, Myeloid, Acute/therapy , Quality of Life , Selection Bias , Surveys and Questionnaires , Clinical Trials as Topic
2.
J Cancer Surviv ; 17(4): 1238-1250, 2023 08.
Article in English | MEDLINE | ID: mdl-35059962

ABSTRACT

PURPOSE: Little is known regarding long-term neurocognitive outcomes in osteosarcoma and Ewing sarcoma (EWS) survivors despite potential risk factors. We evaluated associations among treatment exposures, chronic health conditions, and patient-reported neurocognitive outcomes in adult survivors of childhood osteosarcoma and EWS. METHODS: Five-year survivors of osteosarcoma (N = 604; median age 37.0 years) and EWS (N = 356; median age 35.0 years) diagnosed at < 21 years from 1970 to 1999, and 697 siblings completed the Childhood Cancer Survivor Study Neurocognitive Questionnaire and reported chronic health conditions, education, and employment. Prevalence of reported neurocognitive difficulties were compared between diagnostic groups and siblings. Modified Poisson regression identified factors associated with neurocognitive difficulties. RESULTS: Osteosarcoma and EWS survivors, vs. siblings, reported higher prevalences of difficulties with task efficiency (15.4% [P = 0.03] and 14.0% [P = 0.04] vs. 9.6%, respectively) and emotional regulation (18.0% [P < 0.0001] and 15.2% [P = 0.03] vs. 11.3%, respectively), adjusted for age, sex, and ethnicity/race. Osteosarcoma survivors reported greater memory difficulties vs. siblings (23.5% vs. 16.4% [P = 0.01]). Comorbid impairment (i.e., ≥ 2 neurocognitive domains) was more prevalent in osteosarcoma (20.0% [P < 0.001]) and EWS survivors (16.3% [P = 0.02]) vs. siblings (10.9%). Neurological conditions were associated with worse task efficiency (RR = 2.17; 95% CI = 1.21-3.88) and emotional regulation (RR = 1.88; 95% CI = 1.01-3.52), and respiratory conditions were associated with worse organization (RR = 2.60; 95% CI = 1.05-6.39) for EWS. Hearing impairment was associated with emotional regulation difficulties for osteosarcoma (RR = 1.98; 95% CI = 1.22-3.20). Patient report of cognitive difficulties was associated with employment but not educational attainment. CONCLUSIONS: Survivors of childhood osteosarcoma and EWS are at increased risk for reporting neurocognitive difficulties, which are associated with employment status and appear related to chronic health conditions that develop over time. IMPLICATIONS FOR CANCER SURVIVORS: Early screening, prevention, and treatment of chronic health conditions may improve/prevent long-term neurocognitive outcomes.


Subject(s)
Bone Neoplasms , Cancer Survivors , Neoplasms , Osteosarcoma , Sarcoma, Ewing , Adult , Humans , Adolescent , Sarcoma, Ewing/epidemiology , Sarcoma, Ewing/complications , Cancer Survivors/psychology , Osteosarcoma/epidemiology , Osteosarcoma/complications , Survivors/psychology , Bone Neoplasms/epidemiology , Bone Neoplasms/complications , Neoplasms/psychology
3.
Pediatr Blood Cancer ; 69(11): e29933, 2022 11.
Article in English | MEDLINE | ID: mdl-36069432

ABSTRACT

Social determinants of health (SDoH) are associated with stark disparities in cancer outcomes, but systematic SDoH data collection is virtually absent from oncology clinical trials. Trial-based SDoH data are essential to ensure representation of marginalized populations, contextualize outcome disparities, and identify health-equity intervention opportunities. We report the feasibility of a pediatric oncology multicenter therapeutic trial-embedded SDoH investigation. Among 448 trial participants, 392 (87.5%) opted-in to the embedded SDoH study; 375 (95.7%) completed baseline surveys, with high longitudinal response rates (88.9-93.1%) over 24 months. Trial-embedded SDoH data collection is feasible and acceptable and must be consistently included within future oncology trials.


Subject(s)
Neoplasms , Social Determinants of Health , Child , Feasibility Studies , Health Status Disparities , Humans , Neoplasms/therapy
5.
Pediatr Blood Cancer ; 68(11): e29342, 2021 11.
Article in English | MEDLINE | ID: mdl-34519425

ABSTRACT

BACKGROUND: Integratedbehavioral health models have been proposed as care delivery approaches to mitigate mental health disparities in primary care settings. However, these models have not yet been widely adopted or evaluated in pediatric oncology medical homes. METHODS: We conducted a retrospective cohort study of 394 children with newly diagnosed cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCH) from April 2013 to January 2017. Baseline sociodemographic characteristics and psychiatry utilization outcomes at 12 months following diagnosis were abstracted from the medical record. The severity of household material hardship (HMH), a concrete poverty exposure, at diagnosis and race/ethnicity were characterized by parent report using the Psychosocial Assessment Tool 2.0 (PAT). Associations between sociodemographic characteristics and receipt of psychiatry consultation were assessed with multivariable logistic regression models. RESULTS: Among 394 children, 29% received a psychiatric consultation within 12 months postdiagnosis. Of these, 88% received a new psychiatric diagnosis, 76% received a psychopharmacologic recommendation, and 62% received a new behavioral intervention recommendation. In multivariable logistic regression adjusting for age, cancer diagnosis, and PAT total score, there was no statistically significant association between HMH severity or household income and psychiatry utilization. Children who identified as racial/ethnic minorities were significantly less likely to receive a psychiatry consultation (OR = 0.48, 95% CI = 0.27-0.84). CONCLUSIONS: In a pediatric oncology medical home with an integrated behavioral health model, socioeconomic status was not associated with disparate psychiatry utilization. However, there remained a profound racial/ethnic disparity in psychiatry utilization, highlighting the need for additional research and care delivery intervention.


Subject(s)
Ethnic and Racial Minorities , Healthcare Disparities , Neoplasms , Psycho-Oncology , Child , Humans , Neoplasms/psychology , Neoplasms/therapy , Poverty , Retrospective Studies , Social Class
6.
Pediatr Blood Cancer ; 68(10): e29195, 2021 10.
Article in English | MEDLINE | ID: mdl-34190405

ABSTRACT

BACKGROUND: Poverty is associated with inferior psychosocial outcomes, higher rates of relapse, and decreased overall survival in children with cancer. Despite this, there are few evidence-based, poverty-targeted interventions and none specific to pediatric oncology. To address this gap, we developed and refined the Pediatric Cancer Resource Equity (PediCARE) intervention, a household material hardship (HMH) targeted intervention providing transportation and groceries to pediatric oncology families. METHODS: This was a single-arm pilot study conducted at a single, large, tertiary pediatric cancer center. Newly diagnosed patients with HMH-exposure were directly assigned to receive PediCARE for a total of three months. Quantitative and qualitative approaches were used to evaluate its acceptability and to rapidly refine the intervention. RESULTS: Nine families (100% of those approached) consented to enrollment with no attrition over the three-month study period. Families were highly satisfied with the intervention and recommended participation to others. All of the families utilized the grocery delivery component of PediCARE, and seven utilized the transportation component. Qualitative participant feedback was used to rapidly refine the intervention including logistics of intervention delivery, and dose of intervention components. CONCLUSION: PediCARE, a poverty-targeted intervention, was highly acceptable to pediatric oncology families. The intervention was refined in real-time utilizing quantitative and qualitative feedback. Next steps include intervention evaluation in a randomized, controlled feasibility study.


Subject(s)
Neoplasms , Poverty , Child , Feasibility Studies , Humans , Medical Oncology , Neoplasms/therapy , Pilot Projects
7.
Pediatr Blood Cancer ; 68(10): e29127, 2021 10.
Article in English | MEDLINE | ID: mdl-34022098

ABSTRACT

BACKGROUND: Modern therapeutic advances in high-risk neuroblastoma have improved overall survival (OS), but it is unclear whether these survival gains have been equitable. This study examined the relationship between socioeconomic status (SES) and overall survival (OS) in children with high-risk neuroblastoma and whether SES-associated disparities have changed over time. PROCEDURE: In this population-based cohort study, children <18 years diagnosed with high-risk neuroblastoma (diagnosis at age ≥12 months with metastatic disease) from 1991 to 2015 were identified through the National Cancer Institute's Surveillance, Epidemiology, and End Results database. Associations of county-level SES variables and OS were tested with univariate Cox proportional hazards regression. For a subcohort diagnosed after 2007, insurance status was examined as an individual-level SES variable. Multivariable regression analyses with treatment era and interaction terms were performed when SES variables reached near-significance (p ≤ .1) in univariate and bivariate modeling with treatment era. RESULTS: Among 1217 children, 2-year OS improved from 53.0 ± 3.4% in 1991-1998 to 76.9 ± 2.9% in 2011-2015 (p < .001). In univariate analyses, children in high-poverty counties (hazard ratio [HR] = 1.74, 95% confidence interval [CI] = 1.17-2.60, p = .007), and those with Medicaid (HR = 1.40, 95% CI = 1.05-1.86, p = .02) experienced an increased hazard of death. No interactions between treatment era and SES variables were statistically significant in multivariable analyses, indicating that differences in the OS between SES groups did not change over time. CONCLUSIONS: Survival disparities among children with high-risk neuroblastoma have not widened over time, suggesting equitable access to and benefit from therapeutic advances. However, children of low SES experience persistently inferior survival. Interventions to narrow this disparity are paramount.


Subject(s)
Healthcare Disparities , Neuroblastoma , Social Class , Socioeconomic Factors , Adolescent , Child , Child, Preschool , Cohort Studies , Humans , Infant , Insurance Coverage , Neuroblastoma/therapy , Poverty , United States/epidemiology
10.
Clin Teach ; 16(4): 339-344, 2019 08.
Article in English | MEDLINE | ID: mdl-31397104

ABSTRACT

BACKGROUND: Training in clinical medicine involves exposure to complex ethical and emotional situations. Reflection aids in the development of personal belief systems and improves self-awareness. Students may be reluctant to participate when reflection is mandatory and may be concerned about retaliation when the facilitator has a role in evaluations. Near-peers are institutional equals with more experience than the participants and may be well suited to facilitate reflection. METHODS: A quarterly near-peer-facilitated reflective writing workshop (RWW) was implemented in the mandatory clinical curriculum at a single institution. Qualitative feedback forms were solicited and were analysed through an iterative and inductive consensus process. An end-of-year web-based survey was distributed to test the hypotheses generated from our analysis of the feedback forms. RESULTS: There were 82 responses (80%) to the web-based survey and 266 (65%) feedback forms were collected. Although few students reported using writing as a coping mechanism, the RWW was viewed favourably, with 62% indicating that they would attend if optional. The structured prompts aided reflection. Students reported a higher likelihood of discussing difficult topics (doubts about medicine as a career, personal shortcomings, harassment and burnout) in sessions led by a near-peer than by a faculty member. The workshop created a safe space to reflect, increased a sense of camaraderie and helped normalise experiences. [The workshop] humanised the clinical experience, gave new perspective and reminded students of their positive personal accomplishments DISCUSSION: The near-peer-facilitated RWW is a novel intervention aimed at developing reflective practice and coping with the challenges of entering clinical medicine. It is highly structured and has been incorporated into the mandatory curriculum. It was well received by students, is generalisable and is easily implementable.


Subject(s)
Education, Medical/methods , Students, Medical/psychology , Writing , Curriculum , Education , Formative Feedback , Humans , Peer Group
11.
MedEdPORTAL ; 15: 10858, 2019 11 22.
Article in English | MEDLINE | ID: mdl-32166114

ABSTRACT

Introduction: The medical community recognizes the importance of confronting structural racism and implicit bias to address health inequities. Several curricula aimed at teaching trainees about these issues are described in the literature. However, few curricula exist that engage faculty members as learners rather than teachers of these topics or target interdisciplinary audiences. Methods: We developed a longitudinal case conference curriculum called Health Equity Rounds (HER) to discuss and address the impact of structural racism and implicit bias on patient care. The curriculum engaged participants across training levels and disciplines on these topics utilizing case-based discussion, evidence-based exercises, and two relevant conceptual frameworks. It was delivered quarterly as part of a departmental case conference series. We evaluated HER's feasibility and acceptability by tracking conference attendance and administering postconference surveys. We analyzed quantitative survey data using descriptive statistics and qualitatively reviewed free-text comments. Results: We delivered seven 1-hour HER conferences at our institution from June 2016 to June 2018. A mean of 66 participants attended each HER. Most survey respondents (88% or more) indicated that HER promoted personal reflection on implicit bias, and 75% or more indicated that HER would impact their clinical practice. Discussion: HER provided a unique forum for practitioners across training levels to address structural racism and implicit bias. Our aim in dissemination is to provide meaningful tools for others to adapt at their own institutions, recognizing that HER should serve as a component of larger, multifaceted efforts to decrease structural racism and implicit bias in health care.


Subject(s)
Faculty, Medical/education , Health Equity/statistics & numerical data , Racism/psychology , Students/psychology , Teaching Rounds/methods , Attitude of Health Personnel/ethnology , Bias , Cultural Diversity , Curriculum , Evaluation Studies as Topic , Faculty, Medical/psychology , Feasibility Studies , Health Equity/trends , Humans , Interdisciplinary Communication , Interprofessional Relations/ethics , Racism/statistics & numerical data , Surveys and Questionnaires
12.
Pediatr Blood Cancer ; 65(12): e27380, 2018 12.
Article in English | MEDLINE | ID: mdl-30069999

ABSTRACT

BACKGROUND: Based on the strong link between poverty and child health outcomes, both the American Academy of Pediatrics (AAP) and national pediatric oncology associations have advocated for routine clinical poverty screening. Systematic implementation of this recommendation in pediatric oncology is not yet standard, and feasibility data are needed. We report the feasibility of routine poverty screening in a pediatric oncology referral center and baseline poverty characteristics of this population. METHODS: From 2013 to 2017, 448 families with newly diagnosed pediatric cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were offered the Psychosocial Assessment Tool 2.0 (PAT) as part of routine care. The PAT includes a two-item screen for household material hardship (HMH). All families were asked about annual household income by a resource specialist. Data were abstracted with sociodemographic and child/disease characteristics. Descriptive statistics are reported. RESULTS: Four hundred and thirteen families completed the PAT (response rate 92%), of whom 394 (95%) completed specific questions assessing for HMH. Ninety-four percent of families who met with a resource specialist disclosed their annual household income. One quarter (27%) of families was ≤200% federal poverty level at diagnosis, and 44% of families endorsed at least one domain of HMH. The most frequent domains of HMH included housing (24%), utilities (20%), and transportation (20%). CONCLUSIONS: Systematic poverty screening per AAP and pediatric oncology psychosocial standards of care is feasible in routine cancer care. There is a high baseline incidence (44%) of HMH in at least one domain in families with newly diagnosed pediatric cancer who may benefit from early identification and resource intervention.


Subject(s)
Medical Oncology/methods , Pediatrics/methods , Poverty , Surveys and Questionnaires , Adolescent , Caregivers , Child , Child, Preschool , Feasibility Studies , Female , Humans , Male , Poverty/statistics & numerical data , United States
13.
Cancer ; 124(15): 3220-3230, 2018 08 01.
Article in English | MEDLINE | ID: mdl-29888538

ABSTRACT

BACKGROUND: Neuroblastoma survivors may be at elevated risk for psychological impairments because of their young age at diagnosis and neurotoxic treatment, but this is not well described. METHODS: A total of 859 ≥5-year survivors of neuroblastoma younger than 18 years (diagnosed in 1970-1999), who had a median age at diagnosis of 0.8 years (range: 0.0-7.3 years) and a median follow-up of 13.3 years (range: 8.0-17.9 years), were compared with 872 siblings of childhood cancer survivors who were younger than 18 years with the parent-reported Behavior Problem Index (BPI) for psychological functioning. Age- and sex-adjusted multivariate log-binomial models were used to identify factors associated with impairment in BPI domains (scores worse than the sibling 10th percentile). The impact of psychological impairment on educational outcomes was examined among survivors. RESULTS: Compared with siblings, neuroblastoma survivors had an increased prevalence of impairment in the domains of anxiety/depression (19% vs 14%; P = .003), headstrong behavior (19% vs 13%; P < .001), attention deficits (21% vs 13%; P < .001), peer conflict/social withdrawal (26% vs 17%; P < .001), and antisocial behavior (16% vs 12%; P = .01). Common treatment exposures (vincristine, cisplatin, and retinoic acid) were not associated with impairment. Having 2 or more chronic health conditions predicted impairment in 4 domains (P < .001). Specifically, pulmonary disease predicted impairment in all 5 domains (P ≤ .004). Endocrine disease (P ≤ .004) and peripheral neuropathy (P ≤ .02) each predicted impairment in 3 domains. Psychological impairment was associated with special education service usage and educational attainment less than college. CONCLUSIONS: Neuroblastoma survivors are at elevated risk for psychological impairment, which is associated with special education service usage and lower adult educational attainment. Those with chronic health conditions may represent a high-risk group for targeted screening and intervention. Cancer 2018. © 2018 American Cancer Society.


Subject(s)
Cancer Survivors/psychology , Depression/psychology , Neuroblastoma/psychology , Stress, Psychological , Adolescent , Cancer Survivors/education , Child , Child, Preschool , Depression/complications , Female , Health Status , Humans , Infant, Newborn , Male , Neuroblastoma/complications , Neuroblastoma/epidemiology , Neuroblastoma/pathology , Risk Factors , Siblings , Surveys and Questionnaires
14.
Support Care Cancer ; 26(7): 2177-2184, 2018 Jul.
Article in English | MEDLINE | ID: mdl-29383508

ABSTRACT

PURPOSE: Childhood cancer patients report low physical activity levels despite the risk for long-term complications that may benefit from exercise. Research is lacking regarding exercise barriers, preferences, and beliefs among patients (1) on- and off-therapy and (2) across the age spectrum. METHODS: Cross-sectional study in the Yale Pediatric Hematology-Oncology Clinic (October 2013-October 2014). Participants were ≥ 4 years old, > 1 month after cancer diagnosis at < 20 years, not acutely ill, expected to live > 6 months, and received chemotherapy and/or radiation. Participants (or parents if < 13 years) completed a survey. RESULTS: The 162 patients (99% participated) were 34% children (4.0-12.9 years), 31% adolescents (13.0-17.9 years), and 35% adults (≥ 18 years). Most had leukemia/lymphoma (66%); 32% were on-therapy. On-therapy patients were more likely than off-therapy patients (73 vs. 48%; p = 0.003) to report ≥ 1 barrier related to physical complaints, such as "just too tired" (46 vs. 28%; p = 0.021) or "afraid" of injury (22 vs. 9%; p = 0.027). The majority preferred walking (73%), exercising at home (91%), exercising in the afternoon (79%), and a maximum travel time of 10-20 min (54%); preferences did not vary significantly by therapy status or age. Most respondents (94%) recognized the benefits of exercise after cancer, but 50% of on- vs. 12% of off-therapy patients believed "their cancer diagnosis made it unsafe to exercise regularly" (p < 0.001). CONCLUSIONS: Physical activity barriers pertaining to physical complaints and safety concerns were more pronounced in on-therapy childhood cancer patients but persisted off-therapy. Preferences and beliefs were relatively consistent. Our data can inform interventions in different patient subgroups.


Subject(s)
Exercise/psychology , Fatigue/pathology , Leukemia/therapy , Lymphoma/therapy , Adolescent , Cancer Survivors/psychology , Child , Child, Preschool , Cross-Sectional Studies , Exercise/physiology , Female , Humans , Male , Medical Oncology , Surveys and Questionnaires
15.
J Pediatr Intensive Care ; 7(1): 62-66, 2018 Mar.
Article in English | MEDLINE | ID: mdl-31073471

ABSTRACT

We describe a case of succinyl-CoA:3-oxoacid CoA transferase (SCOT) deficiency in an otherwise healthy 14 month-old female. She presented with lethargy, tachypnea, and hyperpnea with hypoglycemia and a severe anion gap metabolic acidosis. Early management included correction of the acidosis and metabolic support with dextrose and insulin. Inborn errors of metabolism are rare outside the neonatal period. However, SCOT deficiency may present at older ages. Maintaining a high index of suspicion, immediate transfer to a pediatric intensive care unit, and prompt metabolic support are key to achieving a favorable outcome.

16.
Cancer ; 124(3): 571-579, 2018 02 01.
Article in English | MEDLINE | ID: mdl-29112230

ABSTRACT

BACKGROUND: Children with average-risk acute lymphoblastic leukemia (AR-ALL) face many challenges that can adversely affect their quality of life (QOL). However, to the authors' knowledge, patterns and predictors of QOL impairment during therapy have not been well characterized to date. METHODS: Patients with AR-ALL who were enrolled on the Children's Oncology Group AALL0932 trial were offered participation in this prospective cohort study if they were aged ≥4 years at the time of diagnosis and had an English-speaking parent. At approximately 2 months, 8 months, 17 months, 26 months, and 38 months (boys only) after diagnosis, parents completed the Pediatric Quality of Life Inventory Generic Core Scales Version 4.0 (PedsQL4.0) and McMaster Family Assessment Device instruments for QOL (physical, emotional, and social functioning) and family functioning, respectively. The proportions of individuals scoring in the impaired range (2 standard deviations below the population mean) were calculated at each time point. Longitudinal impairment patterns and predictors were examined. RESULTS: A total of 594 participants with AR-ALL were diagnosed at a mean age of 6.0 years (standard deviation, 1.6 years). At 2 months, a substantial proportion of participants had impaired scores for physical (36.5%; 95% confidence interval [95% CI], 32.3%-40.8%) and emotional (26.2%; 95% CI, 22.5%-30.2%) functioning compared with population norms of 2.3%. These elevations persisted at 26 months. Emotional impairment at 2 months (odds ratio, 3.4; 95% CI, 1.5-7.7) was found to significantly predict emotional impairment at 26 months. In repeated measures analysis with multivariate modeling, unhealthy family functioning (odds ratio, 1.5; 95% CI, 1.1-2.1) significantly predicted emotional impairment controlling for age and sex. QOL outcomes were similar between sexes at the end of therapy (26 months for girls and 38 months for boys). CONCLUSIONS: Many children with AR-ALL experience physical and emotional functioning impairment that begins early in treatment and persists. Early screening may identify high-risk patients who might benefit from family-based interventions. Cancer 2018;124:571-9. © 2017 American Cancer Society.


Subject(s)
Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Quality of Life , Affective Symptoms/epidemiology , Child , Child, Preschool , Female , Humans , Longitudinal Studies , Male , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Sex Characteristics
17.
Support Care Cancer ; 25(5): 1547-1555, 2017 05.
Article in English | MEDLINE | ID: mdl-28050709

ABSTRACT

PURPOSE: Focusing on primary care providers (PCPs) of known childhood cancer survivors, we used a mixed methods approach to understand providers' experiences with the survivorship care plan (SCP), as well as preferences and barriers regarding survivorship care. METHODS: The SCP was sent to 202 eligible PCPs of patients attending a regional survivorship clinic. The PCPs then completed quantitative postal surveys. Sixteen PCPs underwent an additional qualitative interview. Provider characteristics were examined as potential predictors of experiences, preferences, and barriers regarding survivorship care. Grounded theory was utilized to analyze the qualitative data. RESULTS: Respondents (n=134) included 55% pediatricians, 23% internists, 20% family practitioners, and 2% obstetricians/gynecologists. Only 8% of PCPs preferred to have primary responsibility for survivorship care; 46% favored a specialized clinic. A minority of PCPs reported that they felt "very comfortable" using the SCP to guide surveillance (31%) or deliver all survivorship care (3%). Endorsed barriers included lack of knowledge/training (74%), not recalling or understanding the contents of the SCP (69%), and uncertainty about who is responsible for providing care (58%). Two distinct themes emerged from the qualitative interviews: a preference not to be responsible for survivorship care, and uncertain utility of the SCP. CONCLUSIONS: Our study suggests that PCPs of childhood cancer survivors generally felt uncomfortable using the SCP and providing survivorship care. Even with the availability of the SCP, the biggest barrier was lack of knowledge. Our data suggests that including PCPs in survivorship care will require additional educational opportunities and evaluation of more collaborative models of care delivery.


Subject(s)
Neoplasms/mortality , Adult , Aged , Female , Humans , Male , Middle Aged , Neoplasms/pathology , Physicians, Primary Care , Survivors
18.
Pediatr Blood Cancer ; 64(2): 387-394, 2017 02.
Article in English | MEDLINE | ID: mdl-27615711

ABSTRACT

BACKGROUND: Over 70% of childhood cancer survivors develop late complications from therapy, many of which can be mitigated by physical activity. Survivors engage in exercise at similar or lower rates than their sedentary healthy peers. We piloted a novel home-based exercise intervention with a motivational activity tracker. We evaluated (i) feasibility, (ii) impact on activity levels and physical fitness, and (iii) barriers, preferences, and beliefs regarding physical activity. METHODS: Childhood cancer survivors currently 15 years or older and not meeting the Centers for Disease Control and Prevention physical activity guidelines were enrolled and instructed to wear the Fitbit One, a 4.8 cm × 1.8 cm motivational activity tracker, daily for 6 months. Baseline and follow-up evaluations included self-report surveys, an Actigraph accelerometer for 7 days, and a VO2 maximum test by cardiac stress test. RESULTS: Nineteen participants were enrolled (13.4% participation rate) with a mean age of 24.3 ± 5.8 years (range 15-35). Four participants withdrew with a 79% retention rate. Participants wore the Fitbit an average of 19.0 ± 4.7 days per month during months 1-3 and 15.0 ± 7.9 days per month during months 4-6. Total weekly moderate to vigorous physical activity increased from 265.6 ± 117.0 to 301.4 ± 135.4 min and VO2 maximum increased from 25.7 ± 7.7 to 27.2 ± 7.4 ml/kg/min. These changes were not statistically significant (P = 0.47 and 0.30, respectively). Survey responses indicated no change in barriers, preferences, and beliefs regarding physical activity. CONCLUSIONS: This pilot study of a motivational activity tracker demonstrated feasibility as measured by participant retention, receptivity, and belief of utility. Future studies with a large sample size are needed to demonstrate the efficacy and sustainability of this intervention.


Subject(s)
Exercise/physiology , Home Care Services , Neoplasms/therapy , Survivors , Adolescent , Adult , Early Intervention, Educational , Female , Fitness Trackers , Follow-Up Studies , Humans , Male , Motivation , Pilot Projects , Prognosis , Quality of Life , Young Adult
19.
J Cancer Surviv ; 10(3): 505-13, 2016 06.
Article in English | MEDLINE | ID: mdl-26572903

ABSTRACT

PURPOSE: Because many survivors do not receive recommended follow-up, we sought to characterize patterns and predictors of survivorship clinic attendance in a population-based sample of childhood cancer survivors. METHODS: Using the Connecticut Tumor Registry, we identified all patients diagnosed with cancer at age ≤ 18 years from March 1, 1998 to March 1, 2008, still in follow-up 5 years post-diagnosis, and living <100 miles from Yale. Survivorship clinic attendance, demographics, disease characteristics, and treatment exposures were ascertained. Vital status was confirmed with the National Death Index. The Kaplan-Meier curves and hazard ratios were calculated for survivorship clinic attendance. RESULTS: Four hundred eighty-nine eligible survivors currently 19.1 ± 6.2 years old were diagnosed at a mean age of 9.1 ± 5.8 years with leukemias/lymphomas (47.2 %), central nervous system tumors (16.4 %), sarcomas (11.2 %), thyroid cancers or melanomas (7.8 %), and other solid tumors (17.4 %). The 10-year post-diagnosis clinic attendance probability was 27.8 % (SE = 2.3) overall, and 36.9 % (SE = 4.4) and 40.8 % (SE = 3.8), in patients with radiation and anthracycline exposure, respectively. In adjusted analysis, patients with insurance (HR = 2.90; p < 0.01 for private and HR = 2.05; p = 0.02 for public assistance), treated with anthracyclines (HR = 3.05; p < 0.01), and treated with radiation (HR = 1.90; p < 0.01) were significantly more likely to attend clinic. CONCLUSIONS: The majority of childhood cancer survivors in our population-based sample had not attended survivorship clinic, even among those with high-risk exposures. Health care access, as measured by insurance status, was an important predictor of clinic attendance. IMPLICATIONS FOR CANCER SURVIVORS: More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population.


Subject(s)
Cancer Care Facilities , Neoplasms/rehabilitation , Patient Participation/statistics & numerical data , Survivors , Adolescent , Adult , Child , Child, Preschool , Connecticut/epidemiology , Female , Health Services Accessibility/economics , Health Services Accessibility/statistics & numerical data , Humans , Insurance Coverage , Long-Term Care , Male , Neoplasms/economics , Neoplasms/epidemiology , Patient Participation/economics , Population Surveillance , Retrospective Studies , Survival Rate , Survivors/psychology , Survivors/statistics & numerical data , Young Adult
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