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1.
J Adolesc Young Adult Oncol ; 12(5): 710-717, 2023 10.
Article in English | MEDLINE | ID: mdl-36603107

ABSTRACT

Purpose: Financial concern is a major issue for adolescent and young adult (AYA) cancer patients. Furthermore, unaddressed oncofertility challenges (e.g., infertility) are linked to psychological distress and decreased overall quality of life. Little is known about how financial concern in terms of oncofertility (i.e., concern regarding affording fertility preservation [FP] services) impacts AYAs' decision making and experiences. Methods: AYA cancer patients (n = 27) aged 12-25 years whose cancer treatment conferred risk of infertility were recruited through electronic health record query. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to financial concern were identified. The Institutional Review Board at the University of Michigan approved this study (HUM#00157267). Results: Financial concern was a dominant theme across the qualitative data. Emergent themes included (1) varied access to health insurance, (2) presence of parental/guardian support, (3) reliance upon financial aid, (4) negotiating infertility risk, and (5) lack of preparation for long-term costs. AYAs relied heavily upon parents for out-of-pocket and insurance coverage support. Some participants sought financial aid when guided by providers. Several participants indicated that no financial support existed for their circumstance. Conclusions: Financial consequences in terms of oncofertility are a major issue affecting AYA cancer patients. The incidence and gravity of financial concern surrounding affording oncofertility services merits attention in future research (measuring financial resources of AYAs' parental/support networks), clinical practice (strategically addressing short- and long-term costs; tailored psychosocial support), and health care policy (promoting legislation to mandate pre- and post-treatment FP coverage).


Subject(s)
Fertility Preservation , Infertility , Neoplasms , Humans , Adolescent , Young Adult , Fertility Preservation/psychology , Quality of Life/psychology , Neoplasms/psychology , Infertility/etiology , Infertility/prevention & control , Infertility/psychology , Fertility
2.
Cardiol Young ; 30(12): 1973-1975, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33012302

ABSTRACT

Lymphatic vessel dysplasia is associated with Fontan-associated protein-losing enteropathy. Extra nodal non-Hodgkin lymphomas including mucosa-associated lymphoid tissue (MALT lymphoma) are associated with lymphatic vessel dysplasia. Here, we describe the case of a 7-year-old with Fontan-associated protein-losing enteropathy who developed MALT lymphoma with a clinical course indicative of interaction between these pathologies and improvement in protein-losing enteropathy after MALT lymphoma treatment. This case suggests a pathophysiologic overlap which has implications for the management of Fontan-associated protein-losing enteropathy.


Subject(s)
Fontan Procedure , Lymphatic Vessels , Lymphoma, B-Cell, Marginal Zone , Protein-Losing Enteropathies , Child , Fontan Procedure/adverse effects , Humans , Lymphoid Tissue , Lymphoma, B-Cell, Marginal Zone/complications , Lymphoma, B-Cell, Marginal Zone/diagnosis , Lymphoma, B-Cell, Marginal Zone/surgery , Mucous Membrane , Protein-Losing Enteropathies/diagnosis , Protein-Losing Enteropathies/etiology , Protein-Losing Enteropathies/therapy
3.
J Oncol Pract ; 15(3): e219-e229, 2019 03.
Article in English | MEDLINE | ID: mdl-30702962

ABSTRACT

PURPOSE: Pediatric patients with cancer who live in rural communities face disparate access to medical services compared with those in urban areas. Our objectives were to use qualitative methods to describe how living in a rural setting during receipt of treatment at an urban cancer center affects a patient's clinical course and to identify feasible areas of intervention to enhance service to these families. MATERIALS AND METHODS: We conducted semistructured interviews of caregivers of pediatric patients with cancer who received treatment at an urban pediatric hospital in the Midwest. Questions focused on how distance between home residence and cancer-treating hospital affected cancer treatment. RESULTS: Eighteen caregiver interviews were conducted. Five multithemed domains were identified; two related to receipt of emergent care at local hospitals, one related to the impact that distance had on the family, and two related to managing and coping with a pediatric cancer diagnosis. CONCLUSION: Rural families of pediatric patients with cancer face unique challenges in addition to those previously identified for pediatric patients with cancer, most notably increased travel time to their cancer centers and increased time spent in community hospitals to receive emergent care. We recommend feasible steps to improve the care of rural children with cancer, including improved parental anticipatory guidance about unanticipated emergent visits to local hospitals, outreach to local hospitals, and medical visit coordination.


Subject(s)
Cancer Care Facilities , Health Services Accessibility , Neoplasms/epidemiology , Rural Health Services , Rural Population , Caregivers , Child , Child, Preschool , Female , Humans , Male , Qualitative Research , Socioeconomic Factors
4.
Am J Prev Med ; 56(1): 74-83, 2019 01.
Article in English | MEDLINE | ID: mdl-30573149

ABSTRACT

INTRODUCTION: Human papillomavirus (HPV) vaccine coverage in the U.S. is persistently suboptimal, despite research describing barriers to vaccination and strategies to increase vaccination coverage. The objective was to assess providers' approach to the HPV vaccine and their implementation of strategies to increase HPV vaccination coverage. The hypothesis was that adoption of improvement measures to address underuse of the HPV vaccine has not occurred. METHODS: Community pediatric providers from two Midwestern practice-based research networks completed self-administered electronic surveys. Data were collected over 6 months in 2015 and organized and analyzed in 2016. RESULTS: There were 100 providers that participated. Despite agreement with national recommendations, some providers delayed their recommendation until the adolescent was older and many reported missed vaccination opportunities. Many providers experienced parental concerns including safety of the HPV vaccine, belief their child was not at risk of HPV infection, and their child's resistance to receiving multiple shots. Providers identified the following as barriers to adherence to Advisory Committee on Immunization Practices guidelines: bad publicity of the HPV vaccine, information about the HPV vaccine on the web, and a lack of a follow-up system for those who delayed HPV vaccine initiation. Approximately half of the participants had implemented strategies to address these barriers beyond offering immunization-only appointments. CONCLUSIONS: Participants were aware of barriers to HPV vaccine use, but many had not adopted a systematic approach to increase vaccine coverage. A better understanding of the challenges facing providers to adopting improvement measures and a strategy to address barriers to implementation are needed to improve HPV coverage.


Subject(s)
Papillomavirus Infections/prevention & control , Papillomavirus Vaccines/administration & dosage , Vaccination Coverage , Vaccination/statistics & numerical data , Adolescent , Child , Female , Health Care Surveys , Health Personnel/statistics & numerical data , Humans , Male
5.
Pediatrics ; 138(1)2016 07.
Article in English | MEDLINE | ID: mdl-27296865

ABSTRACT

CONTEXT: The human papillomavirus (HPV) vaccine is a safe, effective cancer prevention method that is underutilized in the United States. Despite increased understanding of barriers to vaccination, rates remain low. Globally, developed and developing nations have achieved high rates of vaccination. OBJECTIVE: Identification of effective strategies is necessary to optimize uptake of the HPV vaccine. We systematically reviewed the literature for national and international interventions that have successfully increased HPV vaccine uptake. DATA SOURCES: We used a standardized protocol to search for articles published between January 1, 2006, and April 30, 2015, in 3 electronic databases: PubMed, Scopus, and Embase. STUDY SELECTION: We identified interventions designed to increase HPV vaccine uptake among adolescents and young adults aged 11 to 26 years. All study designs were acceptable. Only articles that included postintervention vaccination rates were included. DATA EXTRACTION: Two authors independently reviewed each article for data extraction and quality assessment. Interventions were classified according to the Community Preventive Service Task Force guide. RESULTS: Results were reported according to the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. Fifty-one articles met eligibility criteria: 2 informational interventions, 18 behavioral interventions, and 31 environmental interventions. Factors associated with HPV vaccine uptake were increased vaccine availability, decreased financial barriers, and interventions targeting both providers and patients. LIMITATIONS: Lack of consistent RE-AIM metric reporting, limiting our ability to assess intervention validity and quality. CONCLUSIONS: Population-based vaccination strategies that increased vaccine availability reached the greatest number of adolescents and were most successful in achieving high rates of vaccination.


Subject(s)
Health Promotion/methods , Mass Vaccination/statistics & numerical data , Papillomavirus Vaccines , Patient Acceptance of Health Care , Adolescent , Adult , Child , Health Services Accessibility , Humans , Mass Vaccination/methods , Young Adult
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