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1.
JCO Oncol Pract ; 20(4): 483-490, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38237102

ABSTRACT

PURPOSE: Capecitabine is an oral chemotherapy used to treat many gastrointestinal cancers. Its complex dosing and narrow therapeutic index make medication adherence and toxicity management crucial for quality care. METHODS: We conducted a pilot study of PENNY-GI, a mobile phone text messaging-based chatbot that leverages algorithmic surveys and natural language processing to promote medication adherence and toxicity management among patients with gastrointestinal cancers on capecitabine. Eligibility initially included all capecitabine-containing regimens but was subsequently restricted to capecitabine monotherapy because of challenges in integrating PENNY-GI with radiation and intravenous chemotherapy schedules. We used design thinking principles and real-time data on safety, accuracy, and usefulness to make iterative refinements to PENNY-GI with the goal of minimizing the proportion of text messaging exchanges with incorrect medication or symptom management recommendations. All patients were invited to participate in structured exit interviews to provide feedback on PENNY-GI. RESULTS: We enrolled 40 patients (median age 64.5 years, 52.5% male, 62.5% White, 55.0% with colorectal cancer, 50.0% on capecitabine monotherapy). We identified 284 of 3,895 (7.3%) medication-related and 13 of 527 (2.5%) symptom-related text messaging exchanges with incorrect recommendations. In exit interviews with 24 patients, participants reported finding the medication reminders reliable and user-friendly, but the symptom management tool was too simplistic to be helpful. CONCLUSION: Although PENNY-GI provided accurate recommendations in >90% of text messaging exchanges, we identified multiple limitations with respect to the intervention's generalizability, usefulness, and scalability. Lessons from this pilot study should inform future efforts to develop and implement digital health interventions in oncology.


Subject(s)
Cell Phone , Gastrointestinal Neoplasms , Humans , Male , Middle Aged , Female , Capecitabine/pharmacology , Capecitabine/therapeutic use , Pilot Projects , Medication Adherence
2.
J Cancer Surviv ; 18(1): 29-33, 2024 02.
Article in English | MEDLINE | ID: mdl-38294601

ABSTRACT

The Cancer Survivorship Program was established at the University of Pennsylvania Cancer Center in 2001. The Cancer Center was renamed the Abramson Cancer Center of the University of Pennsylvania in 2002 and the survivorship program was henceforth known as the ACC Survivorship Program. The program was supported from 2001 to 2004 in part by a seed grant from the Lance Armstrong Foundation (LAF). The LIVESTRONG Survivorship Centers of Excellence Network was created by the LAF in 2005 and the ACC Survivorship Program joined the Network in 2007. The seven nationwide Cancer Centers that comprised the Network were supported by the LAF through 2015. A focus on clinical care, research, and education led the development of the ACC Survivorship Program. The program is currently led by an advanced practice provider (APP) and staffed by medical, surgical, and radiation oncology APPs and collaborating oncologists. This program provides care to adult survivors of pediatric cancers, as well as survivors of adult-onset cancers such as breast, genitourinary/prostate, lymphoma, head and neck, gastrointestinal, thoracic, sarcoma, and central nervous system. Research protocols for survivors of specific cancer diagnoses have been developed and have resulted in collaborative research, publications, and conference presentations. Sustaining the ACC Survivorship Program has been challenging despite strong endorsement of services by patients, families, and providers. Challenges include barriers such as cost restraints, changing cancer center priorities, and a reduced oncology workforce, issues experienced across the country that must be addressed in the years to come.


Subject(s)
Cancer Survivors , Neoplasms , Sarcoma , Male , Adult , Child , Humans , Neoplasms/therapy , Survivors , Medical Oncology/education , Survivorship
3.
Eur Urol ; 85(4): 337-345, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37246069

ABSTRACT

BACKGROUND: Testicular germ cell tumor (TGCT) is the most common cancer among young White men. TGCT is highly heritable, although there are no known high-penetrance predisposition genes. CHEK2 is associated with moderate TGCT risk. OBJECTIVE: To identify coding genomic variants associated with predisposition to TGCT. DESIGN, SETTING, AND PARTICIPANTS: The study involved 293 men with familial or bilateral (high risk; HR)-TGCT representing 228 unique families and 3157 cancer-free controls. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We carried out exome sequencing and gene burden analysis to identify associations with TGCT risk. RESULTS AND LIMITATIONS: Gene burden association identified several genes, including loss-of-function variants of NIN and QRSL1. We identified no statistically significant association with the sex- and germ-cell development pathways (hypergeometric overlap test: p = 0.65 for truncating variants, p = 0.47 for all variants) or evidence of associations with the regions previously identified via genome-wide association studies (GWAS). When considering all significant coding variants together with genes associated with TGCT on GWAS, there were associations with three major pathways: mitosis/cell cycle (Gene Ontology identity GO:1903047: observed/expected variant ratio [O/E] 6.17, false discovery rate [FDR] 1.53 × 10-11), co-translational protein targeting (GO:0006613: O/E 18.62, FDR 1.35 × 10-10), and sex differentiation (GO:0007548: O/E 5.25, FDR 1.90 × 10-4). CONCLUSIONS: To the best of our knowledge, this study is the largest to date on men with HR-TGCT. As in previous studies, we identified associations with variants for several genes, suggesting multigenic heritability. We identified associations with co-translational protein targeting, and chromosomal segregation and sex determination, identified via GWAS. Our results suggest potentially druggable targets for TGCT prevention or treatment. PATIENT SUMMARY: We searched for gene variations that increase the risk of testicular cancer and found numerous new specific variants that contribute to this risk. Our results support the idea that many gene variants inherited together contribute to the risk of testicular cancer.


Subject(s)
Neoplasms, Germ Cell and Embryonal , Testicular Neoplasms , Male , Humans , Testicular Neoplasms/genetics , Testicular Neoplasms/pathology , Genetic Predisposition to Disease , Genome-Wide Association Study , Exome Sequencing , Case-Control Studies , Neoplasms, Germ Cell and Embryonal/genetics , Germ Cells/pathology
4.
J Natl Compr Canc Netw ; 21(8): 851-880, 2023 08.
Article in English | MEDLINE | ID: mdl-37549914

ABSTRACT

This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on considerations for the comprehensive care of AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.


Subject(s)
Medical Oncology , Neoplasms , Humans , Adolescent , Young Adult , Aged , Neoplasms/diagnosis , Neoplasms/therapy , Neoplasms/psychology , Counseling , Survivorship , Risk Factors
6.
J Health Popul Nutr ; 42(1): 48, 2023 05 29.
Article in English | MEDLINE | ID: mdl-37248541

ABSTRACT

PURPOSE: To determine to what extent head and neck cancer (HNC) survivors participate in health behaviors (HBs) recommended by the National Cancer Center Network (NCCN®). METHODS: Participants identified through the tumor registries at the Abramson Cancer Center (ACC), University of Pennsylvania and affiliated sites. Eligibility: (a) diagnosis and treatment HNC; (b) aged 18 to 70 years; (c) ≥ 1-year post-diagnosis; (d) human papillomavirus (HPV) status confirmed; (e) ability to understand written English. Potential participants received an explanation of the study, informed consent, self-reported questionnaire, and self-addressed stamped envelope. RESULTS: 451 individuals eligible, 102 (23%) agreed to participate, HPV positive (74%). Current smoking rare (7%), historical use common (48%). Current alcohol use common (65%), average 2.1 drinks/day, 12 days/month. 22% binge drank with an average of 3.5 binge-drinking sessions per month. Nutritional behavior mean 7.1 (range 0-16), lower scores indicating better nutrition. Body mass index (BMI) 59% overweight/obese. Adequate aerobic exercise 59%, adequate strength and flexibility 64%. Leisure time activity, 18% sedentary, 19% moderately active, 64% active. All participants reported having a primary care physician, 92% seen in the previous 12 months. CONCLUSIONS: Most HNC survivors participated in some HBs. Current smoking rarely reported, binge drinking and high BMI most common negative HBs. Opportunities remain to improve dietary and exercise behaviors. IMPLICATIONS FOR CANCER SURVIVORS: The NCCN® has outlined HBs that decrease likelihood of cancer survivors developing comorbidities that could impact overall survival. It is incumbent on healthcare providers to educate and encourage cancer survivors to participate in these HBs.


Subject(s)
Cancer Survivors , Head and Neck Neoplasms , Papillomavirus Infections , Humans , Survivors , Health Behavior , Head and Neck Neoplasms/epidemiology , Head and Neck Neoplasms/therapy
7.
J Adolesc Young Adult Oncol ; 12(5): 701-709, 2023 10.
Article in English | MEDLINE | ID: mdl-36779982

ABSTRACT

Purpose: The majority of adolescent and young adult (AYA) cancer survivors do not receive recommended health care surveillance after therapy. We used cross-sectional survey data to evaluate the impact of income, education, marital status, and insurance on health care adherence among AYA survivors. Methods: Eligible survivors were 18-39 years at diagnosis with invasive malignancy, 1-5 years from therapy completion. Online surveys assessed sociodemographic factors and self-report of completion of recommended health care services. Diagnosis and treatment data were abstracted from medical records. Multivariable logistic regression calculated odds ratios (ORs) and 95% confidence intervals (CIs) for adherence in relation to socioeconomic status and support. Results: Of 344 participants, 36% were adherent to at least 80% of recommendations. Adherence varied by cancer type: 34% for breast cancer, 52% for leukemia/lymphoma, 23% for other tumors. Adherence rates were similar among White, Asian, and Hispanic/Latinx patients. Lower adherence was associated with lower education (OR: 0.43; 95% CI: 0.23-0.80 for <4-year college degree) and lower annual income (OR: 0.51; 95% CI: 0.28-0.95 for $41,000-$80,000; OR: 0.40; 95% CI: 0.19-0.86 for ≤$40,000). Adherence decreased with decreasing income levels among those who were 1 to less than 3 years after diagnosis (OR: 0.25; 95% CI: 0.07-0.93 for $81,000-$120,000; OR: 0.24; 95% CI: 0.07-0.84 for $41,000-$80,000; OR: 0.13; 95% CI: 0.03-0.60 for ≤$40,000). Conclusion: Risk of nonadherence to health care guidelines was associated with lower income and lower education among AYA cancer survivors. Identification of these risks and related barriers to adherence in AYA survivors will inform interventions designed to meet needs of these high-risk groups, particularly during the first years after diagnosis. Trial Registration: NCT02192333.


Subject(s)
Breast Neoplasms , Cancer Survivors , Neoplasms , Humans , Adolescent , Young Adult , Female , Cross-Sectional Studies , Delivery of Health Care , Neoplasms/diagnosis , Socioeconomic Factors
9.
Urol Oncol ; 40(8): 385.e9-385.e17, 2022 08.
Article in English | MEDLINE | ID: mdl-35659482

ABSTRACT

INTRODUCTION: Despite high curability, patients with metastatic germ cell tumors (GCT) in the United States general population persistently face inferior outcomes compared with those treated in specialty referral centers. We characterized guideline discordant management in patients with metastatic GCT who experienced relapse after first-line chemotherapy and compared those who were initially treated in community practices vs. academic referral centers. PATIENTS/METHODS: Retrospective analysis of 53 patients with relapsed GCT between 2005 and 2018. First-line GCT management was assessed against the National Comprehensive Cancer Network guidelines. Guideline discordant management, predictors of discordance, and associations with outcomes were assessed. RESULTS: Of 53 patients with relapsed GCT, 34% received guideline discordant care in the first-line setting. Guideline discordant care was more prevalent in patients initially treated in community practices (12/30, 40%) vs. those initially treated in academic centers (3/22, 14%), though in multivariate logistic regression, this difference was not statistically significant (odds ratio: 4.07, P = 0.08). Most patients in community settings who received guideline discordant care were undertreated (10/12, 83%). There were 3 major reasons for guideline discordant care: (1) failure to resect residual masses after chemotherapy (27%, 4/15), (2) mismanagement of chemotherapy-related adverse events (27%, 4/15), and (3) under staging at diagnosis, resulting either insufficient chemotherapy regimen intensity (13%, 2/15) and/or inappropriately receiving primary surgical resection for metastatic disease (20%, 3/15). CONCLUSION: Under treatment was identified in nearly half of patients initially treated in a community setting who later developed relapsed GCT. Referral to specialized centers for a second opinion should be considered for all metastatic GCT patients in the first-line setting and all patients with post-chemotherapy residual disease. More effective methods should be developed to facilitate second opinions from expert centers in the United States.


Subject(s)
Neoplasms, Germ Cell and Embryonal , Neoplasms, Second Primary , Humans , Neoplasm Recurrence, Local , Neoplasm, Residual , Neoplasms, Germ Cell and Embryonal/therapy , Neoplasms, Second Primary/therapy , Practice Guidelines as Topic , Retrospective Studies
10.
JACC CardioOncol ; 4(1): 124-125, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35492816
11.
J Cancer Surviv ; 16(5): 1149-1164, 2022 10.
Article in English | MEDLINE | ID: mdl-34590205

ABSTRACT

PURPOSE: Young adult (YA) cancer survivors have high rates of adverse health and psychosocial outcomes. This risk-stratified, multicenter, randomized controlled trial (RCT) compared a self-management survivorship intervention to usual care in YA survivors with symptoms of cancer-related distress, insomnia, fatigue, pain, and/or depression. METHODS: Eligibility included age 18-39 at diagnosis with an invasive malignancy in the previous 1-5 years. Baseline assessment determined "high need" participants, with 2-5 elevated targeted symptoms. We randomized high need participants to intervention or usual care and offered intervention participants a survivorship clinic visit, which included mutually decided action plans for symptoms. Follow-up calls at 1 and 3 months after the clinic visit reviewed action plan progress. Outcomes compared rates of improved symptoms for intervention vs usual care at 6 months and 12 months. RESULTS: N = 344 completed baseline assessment, with n = 147 (43%) categorized as high need and randomized. Of n = 73 randomized to the intervention, n = 42 (58%) did not attend their survivorship clinic visit. In intent-to-treat analyses, aggregate symptom scores did not differ between arms, though distress improved for 46% in the intervention arm at 6 months compared to 18% in usual care (p = 0.03) among those with elevated distress at baseline. CONCLUSIONS: Distress improved for YAs who received self-management survivorship care. However, the study demonstrates a need for alternative strategies for providing YA survivorship care. TRIAL REGISTRATION: NCT02192333 IMPLICATIONS FOR CANCER SURVIVORS: While YA survivors demonstrate some improved distress when provided survivorship care, to make care accessible and effective, they require options such as remote delivery of care.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Adult , Cancer Survivors/psychology , Fatigue/etiology , Fatigue/therapy , Humans , Neoplasms/psychology , Neoplasms/therapy , Quality of Life , Self Care , Survivorship , Young Adult
12.
Pediatr Blood Cancer ; 68(3): e28884, 2021 03.
Article in English | MEDLINE | ID: mdl-33416214

ABSTRACT

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.


Subject(s)
Cancer Survivors/statistics & numerical data , Health Promotion , Mobile Applications/statistics & numerical data , Neoplasms/prevention & control , Patient Care Planning/standards , Survivorship , Adolescent , Adult , Child , Feasibility Studies , Female , Follow-Up Studies , Humans , Male , Motivation , Prognosis , Survival Rate , Young Adult
13.
PLoS One ; 15(11): e0239321, 2020.
Article in English | MEDLINE | ID: mdl-33175879

ABSTRACT

BACKGROUND: Testicular germ cell tumor (TGCT) incidence has increased in recent decades along with the use and dose of diagnostic radiation. Here we examine the association between reported exposure to diagnostic radiation and TGCT risk. METHODS: We conducted a case-control study of men with and without TGCT recruited from hospital- and population-based settings. Participants reported on exposures to 1) x-ray or CT below the waist and 2) lower GI series or barium enema, which consists of a series of x-rays of the colon. We also derived a combined measure of exposure. We used logistic regression to determine the risk of developing TGCT according to categories of exposures (0, 1-2, or ≥3 exposures) and age at first exposure, adjusting for age, year of birth, race, county, body mass index at diagnosis, family history of TGCT, and personal history of cryptorchidism. RESULTS: There were 315 men with TGCT and 931 men without TGCT in our study. Compared to no exposures, risk of TGCT was significantly elevated among those reporting at least three exposures to x-ray or CT (OR≥3 exposures, 1.78; 95% CI, 1.15-2.76; p = 0.010), lower GI series or barium enema (OR≥3 exposures, 4.58; 95% CI, 2.39-8.76; p<0.001), and the combined exposure variable (OR≥3 exposures, 1.59; 95% CI, 1.05-2.42; p = 0.029). The risk of TGCT was elevated for those exposed to diagnostic radiation at age 0-10 years, compared to those first exposed at age 18 years or later, although this association did not reach statistical significance (OR, 2.00; 95% CI, 0.91-4.42; p = 0.086). CONCLUSIONS: Exposure to diagnostic radiation below the waist may increase TGCT risk. If these results are validated, efforts to reduce diagnostic radiation doses to the testes should be prioritized.


Subject(s)
Abdominal Cavity/radiation effects , Diagnostic Imaging/adverse effects , Neoplasms, Germ Cell and Embryonal/etiology , Pelvis/radiation effects , Radiation Injuries/etiology , Testicular Neoplasms/etiology , Adolescent , Adult , Age Factors , Case-Control Studies , Child , Child, Preschool , Cryptorchidism/etiology , Humans , Infant , Infant, Newborn , Logistic Models , Male , Middle Aged , Radiation , Risk Factors , Testis/radiation effects , Young Adult
14.
Cancer ; 125(11): 1908-1917, 2019 06 01.
Article in English | MEDLINE | ID: mdl-30707763

ABSTRACT

BACKGROUND: The impact of cancer and its treatment on employment and financial burden in adolescents/young adults (AYAs) is not fully known. METHODS: Eligibility for this cross-sectional study of AYA cancer survivors included the diagnosis of a malignancy between ages 18 and 39 years and survey completion within 1 to 5 years from diagnosis and ≥1 year after therapy completion. Participants were selected randomly from the tumor registries of 7 participating sites and completed an online patient-reported outcomes survey to assess employment and financial concerns. Treatment data were abstracted from medical records. Data were analyzed across diagnoses and by tumor site using logistic regression and Wald-based 95% confidence intervals adjusting for age (categorized), sex, insurance status, education (categorized), and treatment exposures. RESULTS: Participants included 872 survivors (breast cancer, n = 241; thyroid cancer, n = 126; leukemia/lymphoma, n = 163; other malignancies, n = 342). Exposure to chemotherapy in breast cancer survivors was associated with an increase in self-reported mental impairment in work tasks (odds ratio [OR], 2.66) and taking unpaid time off (OR, 2.62); survivors of "other" malignancies reported an increase in mental impairment of work tasks (OR, 3.67) and borrowing >$10,000 (OR, 3.43). Radiation exposure was associated with an increase of mental impairment in work tasks (OR, 2.05) in breast cancer survivors, taking extended paid time off work in thyroid cancer survivors (OR, 5.05), and physical impairment in work tasks in survivors of "other" malignancies (OR, 3.11). Finally, in survivors of "other" malignancies, having undergone surgery was associated with an increase in physical (OR, 3.11) and mental impairment (OR, 2.31) of work tasks. CONCLUSIONS: Cancer treatment has a significant impact on AYA survivors' physical and mental work capacity and time off from work.


Subject(s)
Cancer Survivors/psychology , Neoplasms/economics , Neoplasms/therapy , Unemployment/statistics & numerical data , Adolescent , Adult , Cost of Illness , Cross-Sectional Studies , Female , Financing, Personal , Humans , Logistic Models , Male , Patient Reported Outcome Measures , Young Adult
15.
JAMA Oncol ; 5(4): 514-522, 2019 Apr 01.
Article in English | MEDLINE | ID: mdl-30676620

ABSTRACT

IMPORTANCE: Approximately 50% of the risk for the development of testicular germ cell tumors (TGCTs) is estimated to be heritable, but no mendelian TGCT predisposition genes have yet been identified. It is hypothesized that inherited pathogenic DNA repair gene (DRG) alterations may drive susceptibility to TGCTs. OBJECTIVE: To systematically evaluate the enrichment of germline pathogenic variants in the mendelian cancer predisposition DRGs in patients with TGCTs vs healthy controls. DESIGN, SETTING, AND PARTICIPANTS: A case-control enrichment analysis was performed from January 2016 to May 2018 to screen for 48 DRGs in 205 unselected men with TGCT and 27 173 ancestry-matched cancer-free individuals from the Exome Aggregation Consortium cohort in the discovery stage. Significant findings were selectively replicated in independent cohorts of 448 unselected men with TGCTs and 442 population-matched controls, as well as 231 high-risk men with TGCTs and 3090 ancestry-matched controls. Statistical analysis took place from January to May 2018. MAIN OUTCOMES AND MEASURES: Gene-level enrichment analysis of germline pathogenic variants in individuals with TGCTs relative to cancer-free controls. RESULTS: Among 205 unselected men with TGCTs (mean [SD] age, 33.04 [9.67] years), 22 pathogenic germline DRG variants, one-third of which were in CHEK2 (OMIM 604373), were identified in 20 men (9.8%; 95% CI, 6.1%-14.7%). Unselected men with TGCTs were approximately 4 times more likely to carry germline loss-of-function CHEK2 variants compared with cancer-free individuals from the Exome Aggregation Consortium cohort (odds ratio [OR], 3.87; 95% CI, 1.65-8.86; nominal P = .006; q = 0.018). Similar enrichment was also seen in an independent cohort of 448 unselected Croatian men with TGCTs (mean [SD] age, 31.98 [8.11] years) vs 442 unselected Croatian men without TGCTs (at least 50 years of age at time of sample collection) (OR, >1.4; P = .03) and 231 high-risk men with TGCTs (mean [SD] age, 31.54 [9.24] years) vs 3090 men (all older than 50 years) from the Penn Medicine Biobank (OR, 6.30; 95% CI, 2.34-17.31; P = .001). The low-penetrance CHEK2 variant (p.Ile157Thr) was found to be a Croatian founder TGCT risk variant (OR, 3.93; 95% CI, 1.53-9.95; P = .002). Individuals with the pathogenic CHEK2 loss-of-function variants developed TGCTs 6 years earlier than individuals with CHEK2 wild-type alleles (5.95 years; 95% CI, 1.48-10.42; P = .009). CONCLUSIONS AND RELEVANCE: This multicenter case-control analysis of men with or without TGCTs provides evidence for CHEK2 as a novel moderate-penetrance TGCT susceptibility gene, with potential clinical utility. In addition to highlighting DNA-repair deficiency as a potential mechanism driving TGCT susceptibility, this analysis also provides new avenues to explore management strategies and biological investigations for high-risk individuals.


Subject(s)
Checkpoint Kinase 2/genetics , Genetic Predisposition to Disease , Neoplasms, Germ Cell and Embryonal/genetics , Testicular Neoplasms/genetics , Adult , Case-Control Studies , Germ-Line Mutation , Humans , Male , Young Adult
16.
J Adolesc Young Adult Oncol ; 7(4): 430-437, 2018 08.
Article in English | MEDLINE | ID: mdl-29570983

ABSTRACT

PURPOSE: Young adult survivors (YAS) of cancer experience late effects of treatment similar to older adult survivors (AS). Online health tools such as Internet-based survivorship care plans (SCPs) can provide access to information about late effects and symptom management, but little is known about SCP patterns of use among YAS. METHODS: An Internet-based cross-sectional survey was completed over 24 months. Participants were individuals diagnosed with cancer between 18 and 39 years (YAS, n = 611) or 40-60 years (AS, n = 1742), who were 2-20 years postdiagnosis, and who created an Internet-based SCP. Demographics, treatment-related variables, satisfaction with SCP, communication of SCP, and patient-reported late effects (fatigue, neurocognitive, sexual, cardiovascular, pulmonary, or second cancers) were collected. RESULTS: YAS were primarily female (71%), Caucasian (78%), college educated (65%), and generated the SCP without assistance (76%). YAS reported satisfaction with content (93%) and shared content with providers (71%). A higher proportion of YAS than AS were male (29% vs. 17%, p < 0.001), lived internationally (23% vs. 17%, p = 0.003), and endorsed oncologist-led survivorship care (47% vs. 41%, p = 0.001). YAS reported concerns about neurocognitive performance (56%) and fatigue (50%). Overall, YAS reported equivalent or fewer late effects than AS across all domains. CONCLUSIONS: YAS report high satisfaction with the online SCP, as well as a high symptom burden, although the latter were reported less than for AS.


Subject(s)
Neoplasms/therapy , Patient Care Planning/standards , Patient Reported Outcome Measures , Adolescent , Adult , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Male , Neoplasms/pathology , Survivorship , Young Adult
17.
Support Care Cancer ; 25(8): 2405-2412, 2017 08.
Article in English | MEDLINE | ID: mdl-28233121

ABSTRACT

PURPOSE: Survivor distress is well represented in the literature, but less is known about survivors' concerns and how these relate to adaptation. Using a newly designed Survivorship Concern Scale, we examined concerns and their relationship to psychosocial adaptation among recent breast cancer (BC) survivors. METHODS: One hundred forty-three stage 0-III BC survivors completed an online assessment including the Survivorship Concern Scale (0-3 scale; alpha = 0.91), unmet needs, quality of life (QoL), and anxiety and depressive symptoms within 1 year of end of treatment. RESULTS: Participants were predominately white (76%), middle-aged (51 years), married (70%), and college educated (79%). Eighty-two percent were stage I or II at diagnosis. Mean degree of survivorship concern was moderate (M = 1.75, SD = 0.70) though variable (range = 0.12-3.00). Survivorship concerns were not significantly related to disease, treatment, or demographic variables except income (p = 0.02). Degree of survivorship concern was significantly associated with all indices of psychosocial adaptation: unmet need (r = 0.50), physical and mental QoL (r = -0.32 and r = -0.32, respectively), depressive symptoms (r = 0.21), and anxiety symptoms (r = 0.51; all p < 0.001). Binary logistic regression suggested that each one-point increase in degree of average concern increased the odds for elevated depressive symptoms by 2.83 (p = 0.03) and increased the odds of elevated anxiety symptoms by 3.69 (p < 0.001). CONCLUSIONS: Survivorship concerns in the year following treatment are moderate but variable. Concerns are associated with QoL, unmet need, and psychosocial adaptation. Adequately addressing concerns may be a way to improve psychosocial outcomes early in the survivorship trajectory.


Subject(s)
Breast Neoplasms/psychology , Patient Reported Outcome Measures , Quality of Life/psychology , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Survival Rate , Survivors/psychology
18.
Lancet Oncol ; 18(1): e19-e29, 2017 01.
Article in English | MEDLINE | ID: mdl-28049574

ABSTRACT

Attention to survivors of adult cancers formally began more than 30 years ago with the founding of the National Coalition for Cancer Survivorship by representatives from 20 organisations who envisioned an organisation that would address survivorship issues and include friends, family, and caregivers. Since then, progress has been made in cancer care delivery, which has created challenges for and barriers to provision of optimal follow-up care to patients and survivors living with cancer as a chronic illness. Focus on post-treatment cancer care, including monitoring for long-term and late effects, and concerns regarding the effect of a cancer diagnosis and treatment on quality of life have gained momentum in the past 10 years. This impetus is largely a result of the 2005 Institute of Medicine Report From Cancer Patient to Cancer Survivor: Lost in Transition. Although the issues raised in the report were hardly novel, they gave a new and powerful voice to the cancer survivorship movement that demanded a call to action. In this Series paper, we provide an overview of the issues surrounding provision of cancer survivorship and follow-up care in the USA and discuss potential solutions to these challenges.


Subject(s)
Aftercare , Continuity of Patient Care , Neoplasms/therapy , Quality of Health Care/standards , Survivors , Adult , Humans
19.
J Oncol Pract ; 12(4): e380-7, 2016 Apr.
Article in English | MEDLINE | ID: mdl-27006355

ABSTRACT

PURPOSE: Survivorship care plans (SCPs) are recommended for all cancer survivors. Myriad barriers to implementation exist. This study was performed to evaluate the feasibility of interface development between an SCP and an electronic medical record (EMR). METHODS: An information technology application was developed to extract data from the EMR in use at our center (Epic). Data were transferred to autopopulate an Internet-based tool for creation of SCPs (LIVESTRONG Care Plan) that had been previously used for the creation of more than 35,000 plans. RESULTS: Data (demographic characteristics, surgeries, chemotherapy drugs, radiation site) were extracted from the EMR and transferred to the care plan platform, without transfer of protected health information. Care plans were created and transferred back to the EMR. During clinical testing, SCPs were created by nurse practitioners during scheduled clinic visits for 146 sequential, eligible patients (67% breast cancer, 33% colorectal cancer). All patients received completed care for a single cancer diagnosis at our institution. All data points that were automatically populated were reviewed by practitioners, and missing/blank data fields were populated manually when necessary. Data entered into generated care plans were accurate in 97% of audited cases, and the process of care plan generation could be completed in < 1 minute. CONCLUSION: This is a feasible solution for the autopopulation of SCPs from the EMR. It represents a future methodology through which widespread implementation of SCPs may be undertaken. Future directions include further clinical testing, assessment of provider-perceived usefulness, and integration into routine clinical care.


Subject(s)
Continuity of Patient Care , Electronic Health Records , Internet , Medical Oncology , Survivors , Adult , Aged , Aged, 80 and over , Databases, Factual , Feasibility Studies , Female , Humans , Male , Medical Oncology/methods , Medical Oncology/standards , Middle Aged , Web Browser , Young Adult
20.
CA Cancer J Clin ; 66(1): 43-73, 2016.
Article in English | MEDLINE | ID: mdl-26641959

ABSTRACT

Answer questions and earn CME/CNE The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. A systematic review of the literature was conducted using PubMed through April 2015. A multidisciplinary expert workgroup with expertise in primary care, gynecology, surgical oncology, medical oncology, radiation oncology, and nursing was formed and tasked with drafting the Breast Cancer Survivorship Care Guideline. A total of 1073 articles met inclusion criteria; and, after full text review, 237 were included as the evidence base. Patients should undergo regular surveillance for breast cancer recurrence, including evaluation with a cancer-related history and physical examination, and should be screened for new primary breast cancer. Data do not support performing routine laboratory tests or imaging tests in asymptomatic patients to evaluate for breast cancer recurrence. Primary care clinicians should counsel patients about the importance of maintaining a healthy lifestyle, monitor for post-treatment symptoms that can adversely affect quality of life, and monitor for adherence to endocrine therapy. Recommendations provided in this guideline are based on current evidence in the literature and expert consensus opinion. Most of the evidence is not sufficient to warrant a strong evidence-based recommendation. Recommendations on surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and its treatment, health promotion, and care coordination/practice implications are made.


Subject(s)
Breast Neoplasms/therapy , Survivors , Adult , Aged , American Cancer Society , Body Image , Breast Neoplasms/complications , Breast Neoplasms/psychology , Early Detection of Cancer , Female , Genetic Counseling , Humans , Medical History Taking , Middle Aged , Neoplasm Recurrence, Local/diagnosis , Neoplasms, Second Primary/diagnosis , Physical Examination , Quality of Life , Risk Assessment , Survivors/psychology , United States , Young Adult
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