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1.
CA Cancer J Clin ; 71(3): 250-263, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33283888

RESUMO

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.


Assuntos
Sobreviventes de Câncer/psicologia , Relações Interpessoais , Disfunções Sexuais Fisiológicas/epidemiologia , Disfunções Sexuais Psicogênicas/epidemiologia , Saúde Sexual , Adolescente , Adulto , Imagem Corporal/psicologia , Humanos , Orgasmo , Prevalência , Qualidade de Vida , Excitação Sexual , Disfunções Sexuais Fisiológicas/fisiopatologia , Disfunções Sexuais Fisiológicas/psicologia , Disfunções Sexuais Psicogênicas/fisiopatologia , Disfunções Sexuais Psicogênicas/psicologia , Adulto Jovem
2.
Cancer ; 129(4): 614-623, 2023 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-36530157

RESUMO

BACKGROUND: Cancer survivors are at risk for developing subsequent human papillomavirus (HPV)-related malignancies. HPV vaccination rates among survivors remain low, and the reasons for refusal of the vaccine are unclear in this population. METHODS: The authors conducted a secondary analysis of data from an open-label clinical trial evaluating the immunogenicity and safety of the HPV vaccine among vaccine-naive cancer survivors who were 9-26 years old and 1-5 years from the completion of their cancer treatment. Survivors/parents who declined trial participation were asked their reasons for declining. Refusal reasons were categorized, and multivariable logistic regression models were developed to identify associations between survivor characteristics and primary refusal reasons. RESULTS: Among the 301 survivors who refused participation in the clinical trial, 215 (71.4%) refused for reasons related to the HPV vaccine. Reasons for vaccine-related refusal included safety concerns, vaccine hesitancy/disinterest, external influences, vaccine-related information deficits, and health beliefs/family decisional processes. Compared with males, females were more likely to refuse for reasons related to health beliefs/family decisional processes (odds ratio [OR], 2.08; 95% confidence interval [CI], 1.12-3.93; p = .022) and were less likely to do so because of external influences (OR, 0.43; 95% CI, 0.19-0.92; p = .035). Survivors approached about participation during the latter years of the trial were more likely to refuse because of safety concerns (OR, 3.33; 95% CI, 1.55-7.69; p = .003). CONCLUSIONS: Cancer survivors refused participation in an open-label trial evaluating the immunogenicity and safety of the HPV vaccine primarily because of vaccine-related concerns that were unrelated to the research study. Many of these concerns are potentially addressable by health care providers using evidence-based messages tailored to the cancer survivor population.


Assuntos
Sobreviventes de Câncer , Vacinas Anticâncer , Neoplasias , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto Jovem , Conhecimentos, Atitudes e Prática em Saúde , Papillomavirus Humano , Neoplasias/epidemiologia , Infecções por Papillomavirus/complicações , Infecções por Papillomavirus/prevenção & controle , Infecções por Papillomavirus/tratamento farmacológico , Pais , Vacinação
3.
Pediatr Blood Cancer ; 70(1): e30052, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36308423

RESUMO

BACKGROUND: Children and adolescents who receive gonadotoxic treatments are at risk for future infertility. While there is a growing focus on integrating fertility preservation (FP) within pediatric cancer and blood disorder centers, wide variations in care models and methods exist across institutions. The purpose of this work is to describe the evolution of FP care models within a large pediatric hematology/oncology center. METHODS: Models of care and associated timeframes are described, including a pre-FP program model, establishment of a formal FP program, integration of nurse navigators, and the addition of FP consult stratification based on urgency (urgent/nonurgent). The number of patient consults within each model, patient sex, diagnosis (oncologic/hematologic), and consult timing (pre-gonadotoxic treatment/posttreatment completion) were abstracted from the clinical database. RESULTS: The number of annual consults increased from 24 during the pre-FP program model (2015) to 181 during the current care model (2020). Over time, the proportion of consults for females and patients with nonmalignant hematologic disorders increased. Patient stratification reduced the proportion of consults needing to be completed urgently from 75% at the advent of the FP program to 49% in the current model. CONCLUSIONS: The evolution of care models within our FP program allowed for growth in the number of consults completed, expansion of services to more patients with nonmalignant hematologic disorders, and more consults for female patients. Nurse navigators play a critical role in care facilitating referrals, coordination, and patient education. Urgency stratification has allowed FP team members to manage increasing FP-related encounters.


Assuntos
Preservação da Fertilidade , Doenças Hematológicas , Infertilidade , Neoplasias , Adolescente , Criança , Humanos , Feminino , Preservação da Fertilidade/métodos , Neoplasias/terapia , Oncologia , Encaminhamento e Consulta , Doenças Hematológicas/terapia
4.
Pediatr Blood Cancer ; 70(8): e30448, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37243931

RESUMO

The extent to which heavy metal chemotherapy results in treatment-related ovarian damage is controversial. Anti-Mullerian hormone (AMH) levels measured more than 1 year after cancer therapy completion were abstracted from the medical records of 39 female survivors of childhood cancer aged 11 years and older, whose only gonadotoxic exposure was heavy metal chemotherapy. One-fifth of survivors who received cisplatin had AMH levels indicative of diminished ovarian reserve at last measurement. There was an observed clustering of low AMH in patients diagnosed in the peripubertal age range (i.e., 10-12 years). These findings may support a small, but present, risk of gonadal damage after heavy metal chemotherapy.


Assuntos
Sobreviventes de Câncer , Metais Pesados , Neoplasias , Reserva Ovariana , Feminino , Humanos , Adolescente , Criança , Ovário , Sobreviventes , Hormônio Antimülleriano , Neoplasias/tratamento farmacológico
5.
Pediatr Blood Cancer ; 70 Suppl 5: e28476, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-32633029

RESUMO

Despite being considered "standard of care" by many organizations, fertility and reproductive health communications and counseling practices remain inconsistent for adolescents and young adults (AYAs) newly diagnosed with cancer and during survivorship. One factor known to affect how information is provided and received in the medical setting is health literacy. Providers should consider health literacy to optimize reproductive health communication with AYAs as they cope with their diagnosis, understand what it means for their future, process information about treatment options, learn about their potential harmful effects on fertility, make quick decisions about fertility preservation, and navigate a future family planning course. Thus, the objectives of this manuscript are to (a) summarize literature on reproductive health literacy; (b) describe health literacy frameworks; (c) examine ways to assess health literacy; and (d) identify ways to enhance clinician-patient communication in the AYA oncofertility setting.


Assuntos
Preservação da Fertilidade , Comunicação em Saúde , Letramento em Saúde , Neoplasias , Humanos , Adolescente , Adulto Jovem , Saúde Reprodutiva , Tomada de Decisões , Neoplasias/terapia , Neoplasias/psicologia , Preservação da Fertilidade/psicologia
6.
Pediatr Blood Cancer ; 70(8): e28437, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34873822

RESUMO

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.


Assuntos
Sobreviventes de Câncer , Neoplasias , Saúde Sexual , Criança , Adolescente , Adulto Jovem , Humanos , Adulto , Sobreviventes , Neoplasias/complicações , Neoplasias/terapia , Sobrevivência
7.
Pediatr Blood Cancer ; 70 Suppl 5: e30611, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37548483

RESUMO

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.


Assuntos
Sobreviventes de Câncer , Neoplasias , Saúde Sexual , Criança , Adolescente , Adulto Jovem , Humanos , Adulto , Sobreviventes , Neoplasias/complicações , Neoplasias/terapia , Sobrevivência
8.
J Assist Reprod Genet ; 40(10): 2391-2400, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37584730

RESUMO

PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Humanos , Criança , Adulto Jovem , Feminino , Masculino , Neoplasias/epidemiologia , Neoplasias/complicações , Fertilidade , Sobreviventes , Anticoncepção/métodos , Anticoncepcionais
9.
J Pediatr Nurs ; 72: e47-e52, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37330276

RESUMO

BACKGROUND: Transfer of care, moving hospitalized patients between care areas, is a critical point of vulnerability for healthcare organizations. Patient information handoff is an essential activity occurring frequently in hospital environments. Poor communication has been linked with adverse events and poor patient outcomes. This evidence-based quality project aimed to enhance the handoff process between the Emergency Department (ED) and Pediatric Intensive Care Unit (PICU) by standardizing transfer of care steps. This was accomplished through customizing a reporting tool to contain all the information the receiving department deemed necessary for safe patient care. METHODS: A customized situation, background, assessment, recommendation (SBAR) form handoff tool was developed for ED to PICU transfers. This SBAR tool included information that PICU nurses identified as critical to transfer of care. Nurse perceptions were surveyed pre- and post-implementation. Patient safety event reports were tracked to evaluate events related to transfer of care before and after the practice change. FINDINGS: An increased number of PICU nurses agreed the customized handoff tool was complete and organized. Additionally, more nurses agreed that handoff gave all information needed to safely care for critically ill patients transferred from the ED. Lastly, bedside patient checks increased, and patient safety events related to transfer of care decreased. DISCUSSION: This project demonstrated that implementation of a standardized transfer of care process coupled with a customized handoff tool increased PICU nurse perceptions that handoff was organized, and all information needed to safely care for critically ill patients was conveyed. APPLICATION TO PRACTICE: Transfer of care processes between the ED and PICU should be standardized. The use of customized tools may improve information exchange between nurses and ensure that all vital patient information is communicated.


Assuntos
Transferência da Responsabilidade pelo Paciente , Melhoria de Qualidade , Humanos , Criança , Estado Terminal , Serviço Hospitalar de Emergência , Cuidados Críticos , Comunicação
10.
BMC Pediatr ; 22(1): 541, 2022 09 12.
Artigo em Inglês | MEDLINE | ID: mdl-36096775

RESUMO

BACKGROUND: Childhood cancer survivors are at high risk for developing new cancers (such as cervical and anal cancer) caused by persistent infection with the human papillomavirus (HPV). HPV vaccination is effective in preventing the infections that lead to these cancers, but HPV vaccine uptake is low among young cancer survivors. Lack of a healthcare provider recommendation is the most common reason that cancer survivors fail to initiate the HPV vaccine. Strategies that are most successful in increasing HPV vaccine uptake in the general population focus on enhancing healthcare provider skills to effectively recommend the vaccine, and reducing barriers faced by the young people and their parents in receiving the vaccine. This study will evaluate the effectiveness and implementation of an evidence-based healthcare provider-focused intervention (HPV PROTECT) adapted for use in pediatric oncology clinics, to increase HPV vaccine uptake among cancer survivors 9 to 17 years of age. METHODS: This study uses a hybrid type 1 effectiveness-implementation approach. We will test the effectiveness of the HPV PROTECT intervention using a stepped-wedge cluster-randomized trial across a multi-state sample of pediatric oncology clinics. We will evaluate implementation (provider perspectives regarding intervention feasibility, acceptability and appropriateness in the pediatric oncology setting, provider fidelity to intervention components and change in provider HPV vaccine-related knowledge and practices [e.g., providing vaccine recommendations, identifying and reducing barriers to vaccination]) using a mixed methods approach. DISCUSSION: This multisite trial will address important gaps in knowledge relevant to the prevention of HPV-related malignancies in young cancer survivors by testing the effectiveness of an evidence-based provider-directed intervention, adapted for the pediatric oncology setting, to increase HPV vaccine initiation in young cancer survivors receiving care in pediatric oncology clinics, and by procuring information regarding intervention delivery to inform future implementation efforts. If proven effective, HPV PROTECT will be readily disseminable for testing in the larger pediatric oncology community to increase HPV vaccine uptake in cancer survivors, facilitating protection against HPV-related morbidities for this vulnerable population. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04469569, prospectively registered on July 14, 2020.


Assuntos
Alphapapillomavirus , Sobreviventes de Câncer , Neoplasias , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Adolescente , Assistência ao Convalescente , Criança , Humanos , Papillomaviridae , Infecções por Papillomavirus/complicações , Infecções por Papillomavirus/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
J Assist Reprod Genet ; 39(12): 2857-2864, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36447078

RESUMO

PURPOSE: Cancer survivors with a history of gonadotoxic treatment are at risk for future infertility and reproductive concerns, including worry about infertility. The purpose of this study was to describe factors associated with fertility-related worry among emerging adult survivors of childhood cancer. METHODS: This chart review included patients aged 18.00-25.99 years and > 1 year from cancer treatment completion with a history of gonadotoxic treatment. Survivors were offered structured fertility-focused discussions at age ≥ 18 years, which assessed worry about future infertility. Data from this discussion (i.e., reported fertility-related worry (yes/no), sociodemographic, and clinical characteristics were abstracted from the medical record. Multivariable logistic regression with backwards elimination was used to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with fertility-related worry. RESULTS: Survivors (N = 249) were a mean age of 19.1 ± 1.2 years at initial fertility discussion; 55.8% were male, 58.2% non-Hispanic White, and 27.3% were at high risk for future treatment-related infertility. Fertility-related worry was reported by 66.3% of survivors. Factors related to worry on multivariable analysis included female sex (OR: 2.64, 95%CI: 1.44-4.96, p = .002), solid tumor diagnosis (OR: 2.31, 95%CI: 1.15-4.71, p = .019), moderate and high risk of infertility (OR: 2.94, 95%CI: 1.23-7.64, p = .02; OR: 3.25, 95%CI: 1.55-7.17, p = .002), and ≥ 2 fertility discussions during survivorship care OR: 2.71, 95%CI: 1.46-5.20, p = .002). CONCLUSIONS: Two-thirds of emerging adult cancer survivors expressed worry about future infertility, which has been linked to a variety of adverse quality of life outcomes. Survivors who are worried about infertility may benefit from psychological interventions.


Assuntos
Sobreviventes de Câncer , Infertilidade , Neoplasias , Humanos , Adulto , Masculino , Feminino , Adolescente , Adulto Jovem , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Fertilidade , Infertilidade/psicologia , Sobreviventes/psicologia , Neoplasias/terapia
12.
Support Care Cancer ; 28(8): 3905-3914, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31853699

RESUMO

PURPOSE: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. METHODS: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. CONCLUSIONS: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.


Assuntos
Sobreviventes de Câncer , Registros Eletrônicos de Saúde , Registros de Saúde Pessoal , Criança , Grupos Focais , Pessoal de Saúde , Humanos , Disseminação de Informação , Internet , Avaliação das Necessidades , Neoplasias , Assistência Centrada no Paciente , Design de Software , Interface Usuário-Computador , Adulto Jovem
13.
Cancer ; 125(21): 3810-3817, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31291010

RESUMO

BACKGROUND: Despite an increased risk of subsequent human papillomavirus (HPV)-related malignancies, HPV vaccine initiation rates among cancer survivors remain critically low. The purpose of this study was to determine the relationship between HPV vaccine intent and subsequent vaccine initiation among cancer survivors by linking data from a cross-sectional survey with state-based immunization registry records. METHODS: Cancer survivors who were 9 to 26 years old were surveyed 1 to 5 years after their treatment to assess their HPV vaccine initiation status, HPV vaccine intent, sociodemographic factors, and vaccine-related health beliefs. HPV vaccine doses/dates were abstracted from the Georgia Registry for Immunization Transactions for 3.5 years after survey participation. Logistic regression models identified factors associated with vaccine intent and subsequent vaccine initiation. RESULTS: Among survivors who were HPV vaccine-naive at survey participation (n = 103), factors associated with vaccine intent included the following: 1) provider recommendation for the HPV vaccine (odds ratio [OR], 5.0; 95% confidence interval [CI], 1.4-18.1; P = .014), 2) positive general attitude toward vaccines (OR, 4.8; 95% CI, 2.0-11.2; P < .001), and 3) perceived severity of HPV disease (OR, 3.5; 95% CI, 1.2-9.9; P = .02). Of the vaccine-naive patients, 28 initiated the HPV vaccine at a median of 1.1 years after the survey. Initiation was more likely among survivors who had reported vaccine intent (OR, 3.9; 95% CI, 1.2-12.5; P = .02) and was less likely among older survivors (OR per year, 0.7; 95% CI, 0.6-0.9; P < .001). CONCLUSIONS: These findings suggest that provider recommendation for the HPV vaccine plays a role in establishing intent, which then translates into subsequent initiation.


Assuntos
Sobreviventes de Câncer , Papillomaviridae/efeitos dos fármacos , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/uso terapêutico , Vacinação/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Papillomaviridae/fisiologia , Infecções por Papillomavirus/virologia , Vacinas contra Papillomavirus/administração & dosagem , Inquéritos e Questionários , Vacinação/psicologia , Adulto Jovem
14.
Pediatr Blood Cancer ; 66(12): e27981, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31502374

RESUMO

BACKGROUND: Providers often rely on self-reported ovarian function in adolescent and young adult (AYA)-aged childhood cancer survivors when making clinical decisions. This study described reported menstrual patterns and the agreement between respondent-reported and biochemical premature ovarian insufficiency (POI) in this population. PROCEDURE: This was a cross-sectional study of survivors (or their parent proxy) aged 13-21.9 years who received gonadotoxic therapy and were enrolled in a longitudinal health survey. Participants reported menstrual regularity, hormone-replacement therapy (HRT) use, and ovarian dysfunction. Respondent-reported POI was defined as the survivor taking HRT for ovarian failure or having been told she had ovarian failure. Biochemical POI was defined as follicle-stimulating hormone (FSH) level ≥40 mIU/mL. The agreement between respondent-reported and biochemical POI was determined using Cohen's kappa coefficient (κ) and analyzed by demographic and clinical factors. RESULTS: Among 182 AYA-aged survivors (72.5% non-Hispanic White, 46.7% leukemia survivors), 14.8% reported requiring HRT to have menses but 55.5% reported regular menses without HRT use. Among survivors with FSH measurements (n = 130), 17.7% reported POI whereas 18.5% had FSH ≥40 mIU/mL (κ = 0.66, sensitivity 70.8%, specificity 94.3%). The highest agreement between respondent-reported and biochemical POI was with young adult self-report (κ = 0.78) and survivors with >5 survivor clinic (κ = 0.83) and/or >5 endocrinologist (κ = 1.00) visits. CONCLUSIONS: The majority of AYA-aged survivors reported having regular menses without HRT support. The accuracy of respondent-reported POI increased with repeated survivor clinic or endocrinologist visits, highlighting the importance of continued education. Survivors must be informed about their ovarian function to enable them to advocate for their reproductive health.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/terapia , Pais , Medidas de Resultados Relatados pelo Paciente , Insuficiência Ovariana Primária/diagnóstico , Adolescente , Adulto , Terapia Combinada , Estudos Transversais , Feminino , Seguimentos , Georgia/epidemiologia , Humanos , Incidência , Neoplasias/patologia , Insuficiência Ovariana Primária/epidemiologia , Prognóstico , Procurador , Saúde Reprodutiva , Adulto Jovem
15.
Nurs Adm Q ; 43(2): 175-185, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30839454

RESUMO

Despite the recognized need for clinical nurses to engage in the conduct of research, little is known about their research experiences. This article describes the experiences of nurses who delivered the communication intervention in a behavioral oncology clinical trial for parents of adolescents and young adults (AYAs) with cancer. A qualitative thematic analysis was conducted of nurse interveners' (NIs') reflections on their experiences delivering the communication intervention. Ten data-generating questions were developed to guide NIs' reflections. Twelve NIs responded via verbal discussions. Six of these also provided written responses. Overall, nurses' experiences as interveners were powerful and positive, and included time and space to be fully present with patients and families. Nurse interveners identified barriers to their involvement in research related to time constraints, administrative support, physical space to privately conduct the intervention, and difficulties maintaining expertise with the intervention. The importance of ongoing collaboration between nurses, unit staff, leaders, and study teams was corroborated. An unexpected finding was the importance of reflective clinical research.


Assuntos
Comunicação , Neoplasias/psicologia , Relações Pais-Filho , Adolescente , Pesquisa em Enfermagem Clínica , Humanos , Enfermagem Pediátrica , Adulto Jovem
16.
Future Oncol ; 14(29): 3059-3072, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30474429

RESUMO

Once unimaginable, fertility management is now a nationally established part of cancer care in institutions, from academic centers to community hospitals to private practices. Over the last two decades, advances in medicine and reproductive science have made it possible for men, women and children to be connected with an oncofertility specialist or offered fertility preservation soon after a cancer diagnosis. The Oncofertility Consortium's National Physicians Cooperative is a large-scale effort to engage physicians across disciplines - oncology, urology, obstetrics and gynecology, reproductive endocrinology, and behavioral health - in clinical and research activities to enable significant progress in providing fertility preservation options to children and adults. Here, we review the structure and function of the National Physicians Cooperative and identify next steps.


Assuntos
Preservação da Fertilidade/métodos , Fertilidade/fisiologia , Colaboração Intersetorial , Neoplasias/fisiopatologia , Médicos/organização & administração , Adulto , Antineoplásicos/efeitos adversos , Medicina do Comportamento/organização & administração , Criança , Progressão da Doença , Endocrinologia/métodos , Endocrinologia/organização & administração , Feminino , Fertilidade/efeitos dos fármacos , Ginecologia/métodos , Ginecologia/organização & administração , Humanos , Oncologia/métodos , Oncologia/organização & administração , Neoplasias/complicações , Neoplasias/patologia , Neoplasias/terapia , Obstetrícia/métodos , Obstetrícia/organização & administração , Guias de Prática Clínica como Assunto , Gravidez , Qualidade de Vida , Medicina Reprodutiva/métodos , Medicina Reprodutiva/organização & administração , Estados Unidos , Urologia/métodos , Urologia/organização & administração
17.
Adv Neonatal Care ; 16(6): 439-448, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27533335

RESUMO

BACKGROUND: Applied mechanical vibration in pediatric and adult populations has been shown to be an effective analgesic for acute and chronic pain, including needle pain. Studies among the neonatal population are lacking. According to the Gate Control Theory, it is expected that applied mechanical vibration will have a summative effect with standard nonpharmacologic pain control strategies, reducing behavioral and physiologic pain responses to heel lancing. PURPOSE: To determine the safety and efficacy of mechanical vibration for relief of heel lance pain among neonates. METHODS: In this parallel design randomized controlled trial, eligible enrolled term or term-corrected neonates (n = 56) in a level IV neonatal intensive care unit were randomized to receive either sucrose and swaddling or sucrose, swaddling, and vibration for heel lance analgesia. Vibration was applied using a handheld battery-powered vibrator (Norco MiniVibrator, Hz = 92) to the lateral aspect of the lower leg along the sural dermatome throughout the heel lance procedure. Neonatal Pain, Agitation, and Sedation Scale (N-PASS) scores, heart rate, and oxygen saturations were collected at defined intervals surrounding heel lancing. RESULTS: Infants in the vibration group (n = 30) had significantly lower N-PASS scores and more stable heart rates during heel stick (P = .006, P = .037) and 2 minutes after heel lance (P = .002, P = .016) than those in the nonvibration group. There were no adverse behavioral or physiologic responses to applied vibration in the sample. IMPLICATIONS FOR PRACTICE AND RESEARCH: Applied mechanical vibration is a safe and effective method for managing heel lance pain. This pilot study suggests that mechanical vibration warrants further exploration as a nonpharmacologic pain management tool among the neonatal population.


Assuntos
Calcanhar , Dor/prevenção & controle , Punções/efeitos adversos , Vibração/uso terapêutico , Coleta de Amostras Sanguíneas , Frequência Cardíaca , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Oximetria , Dor/etiologia , Manejo da Dor/métodos , Medição da Dor , Projetos Piloto , Punções/métodos , Sacarose/uso terapêutico , Edulcorantes/uso terapêutico
18.
Cancer ; 120(6): 909-17, 2014 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-24469862

RESUMO

BACKGROUND: To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; 2) decrease risk factors of illness-related distress and defensive coping; and 3) increase outcomes of self-transcendence and resilience. METHODS: This was a multisite randomized, controlled trial (COG-ANUR0631) conducted at 8 Children's Oncology Group sites involving 113 AYAs aged 11-24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase's Resilience in Illness Model (RIM). Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning, and resilience at baseline (T1), postintervention (T2), and 100 days posttransplant (T3). RESULTS: At T2, the TMV group reported significantly better courageous coping (Effect Size [ES], 0.505; P = .030). At T3, the TMV group reported significantly better social integration (ES, 0.543; P = .028) and family environment (ES, 0.663; P = .008), as well as moderate nonsignificant effect sizes for spiritual perspective (ES, 0.450; P = .071) and self-transcendence (ES, 0.424; P = .088). CONCLUSIONS: The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high-risk cancer treatment. We recommend the TMV be examined in a broader population of AYAs with high-risk cancers.


Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Musicoterapia/métodos , Resiliência Psicológica , Adaptação Psicológica , Adolescente , Adulto , Ansiedade/prevenção & controle , Criança , Relações Familiares , Feminino , Células-Tronco Hematopoéticas , Esperança , Humanos , Masculino , Isolamento Social/psicologia , Apoio Social , Estresse Psicológico/prevenção & controle , Adulto Jovem
19.
J Clin Oncol ; 42(6): 717-724, 2024 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-37856773

RESUMO

Sexual health (SH), an integral aspect of overall health and quality of life, can be negatively affected by cancer and cancer treatment. SH is influenced by biological, psychological, social, and cultural factors, and, for adolescents and young adults (AYAs), developmental factors. The AYA population (age 15-39 years) is diverse in terms of psychosexual development, interpersonal relationships, and varying levels of independence, resulting in unique SH needs for this population. AYAs with cancer are particularly vulnerable to unmet SH needs related to contraception and infection prevention, sexual function, body image, and romantic/sexual relationships. Sexual dysfunction during and after cancer treatment is reported by 30%-100% of AYA cancer survivors. Clinical guidelines recommend discussing SH and screening for dysfunction but currently lack specifics regarding psychosexual interventions and strategies for incorporating screening into clinical care. Research and clinical priorities include improved provider-AYA communication regarding SH, standardization of SH measures and screening tools, infrastructure to support the SH needs of AYAs across pediatric and adult clinical environments, and engagement of sexual and gender minority AYAs in research. As the field of SH in cancer evolves, interventions need to be tailored to the developmental needs that are unique to AYAs and address the multidimensional aspects of SH.


Assuntos
Sobreviventes de Câncer , Neoplasias , Saúde Sexual , Humanos , Adolescente , Adulto Jovem , Criança , Adulto , Qualidade de Vida , Relações Interpessoais , Sobreviventes de Câncer/psicologia , Comunicação , Neoplasias/complicações , Neoplasias/terapia , Neoplasias/psicologia
20.
J Eat Disord ; 11(1): 137, 2023 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-37587528

RESUMO

PURPOSE: The purpose of this study was to examine differences in clinical characteristics and hospital length of stay (LOS) for adolescents with eating disorders (EDs) requiring medical stabilization during the pre-COVID-19 and COVID-19 time periods. METHODS: Medical record data were abstracted for patients with EDs hospitalized for medical stabilization between 1/1/2019-2/29/2020 (pre-COVID-19) and 3/1/2020-12/31/2021 (during COVID-19). Patient demographics, clinical characteristics and LOS were compared between COVID-19 eras. Patients were categorized as boarding if they remained hospitalized ≥ 1 day after medical stabilization. Multivariate negative binomial linear regression models were performed to determine incidence rate ratios (IRR) and 95% confidence intervals (95% CI) for factors related to increased LOS. RESULTS: Of the 467 admissions during this study, 120 were pre-COVID-19 and 347 were during COVID-19. Monthly admissions for EDs were higher during COVID-19 versus pre-COVID-19 (15.8 vs. 8.6, p = 0.001). On multivariate analysis, factors associated with increased LOS included admission during COVID-19 (IRR 1.27, 95% CI 1.15-1.40), p = 0.001), boarding (IRR 1.77, 95% CI 1.63-1.93, p = 0.001), public insurance (IRR 1.12, 95% CI 1.01-1.23, p = 0.032), nasogastric tube usage (IRR 1.62, 95% CI 1.48-1.76, p = 0.001), heart rate < 40 beats per minute (IRR 1.21, 95% CI 1.11-1.33, p = 0.001) and abnormal electrocardiogram (IRR 1.25, 95% CI 1.14-1.37, p = 0.001). CONCLUSION: In addition to clinical factors, we found that admission during COVID-19, boarding, and public insurance were associated with increased LOS among patients with EDs. There is a need for greater availability of ED treatment centers to care for patients with EDs after medical stabilization.


The COVID-19 pandemic has had a profound effect on the mental health of young people worldwide. This public health crisis has led to a significant increase in individuals seeking care for an eating disorder. In the United States, hospital admissions for adolescents with eating disorders requiring medical stabilization increased significantly during the COVID-19 pandemic. This study examines differences in the demographic and clinical characteristics of patients with an eating disorder hospitalized pre-COVID-19 and during the COVID-19 pandemic in one pediatric hospital in the United States. We found a significant increase in hospital admissions during the pandemic as well as longer hospital stays. Factors associated with prolonged hospitalizations include those patients with public insurance (Medicaid), nasogastric tube for delivery of nutrition, and low heart rate. We found no difference in demographic factors such as age, gender, and insurance as well as degree of malnutrition and medical severity between the two time periods. The shortage of appropriate eating disorder treatment options upon hospital discharge were especially challenging during the COVID-19 pandemic.

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