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1.
CA Cancer J Clin ; 68(2): 133-152, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29377070

RESUMEN

The population of adult survivors of childhood cancer continues to grow as survival rates improve. Although it is well established that these survivors experience various complications and comorbidities related to their malignancy and treatment, this risk is modified by many factors that are not directly linked to their cancer history. Research evaluating the influence of patient-specific demographic and genetic factors, premorbid and comorbid conditions, health behaviors, and aging has identified additional risk factors that influence cancer treatment-related toxicity and possible targets for intervention in this population. Furthermore, although current long-term follow-up guidelines comprehensively address specific therapy-related risks and provide screening recommendations, the risk profile of the population continues to evolve with ongoing modification of treatment strategies and the emergence of novel therapeutics. To address the multifactorial modifiers of cancer treatment-related health risk and evolving treatment approaches, a patient-centered and risk-adapted approach to care that often requires a multidisciplinary team approach, including medical and behavioral providers, is necessary for this population. CA Cancer J Clin 2018;68:133-152. © 2018 American Cancer Society.


Asunto(s)
Supervivientes de Cáncer , Neoplasias/complicaciones , Neoplasias/psicología , Atención Dirigida al Paciente , Adulto , Factores de Edad , Niño , Conductas Relacionadas con la Salud , Accesibilidad a los Servicios de Salud , Humanos , Neoplasias/terapia , Calidad de Vida , Factores de Riesgo
2.
Cancer ; 129(4): 614-623, 2023 02 15.
Artículo en Inglés | MEDLINE | ID: mdl-36530157

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Vacunas contra el Cáncer , Neoplasias , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Adulto Joven , Conocimientos, Actitudes y Práctica en Salud , Virus del Papiloma Humano , Neoplasias/epidemiología , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/prevención & control , Infecciones por Papillomavirus/tratamiento farmacológico , Padres , Vacunación
3.
Cancer ; 129(10): 1602-1613, 2023 05 15.
Artículo en Inglés | MEDLINE | ID: mdl-36808617

RESUMEN

BACKGROUND: Adult survivors of childhood cancer have poor adherence to nutrition guidelines and inadequate intake of dietary vitamins D and E, potassium, fiber, magnesium, and calcium. The contribution of vitamin and mineral supplement use to total nutrient intake in this population is unclear. METHODS: We examined the prevalence and dose of nutrient intake among 2570 adult survivors of childhood cancer participating in the St. Jude Lifetime Cohort Study, and the association of dietary supplement use with treatment exposures, symptom burden, and quality of life. RESULTS: Nearly 40% of the adult survivors of cancer survivors reported regular use of dietary supplements. Although cancer survivors who used dietary supplements were less likely to have inadequate intake of several nutrients, they were also more likely to have excessive intake (total nutrient intake ≥ tolerable upper intake levels) of folate (15.4% vs. 1.3%), vitamin A (12.2% vs. 0.2%), iron (27.8% vs. 1.2%), zinc (18.6% vs. 1%), and calcium (5.1% vs. 0.9%) compared with survivors who did not use dietary supplements (all p < 0.05). Treatment exposures, symptom burden, and physical functioning were not associated with supplement use, whereas emotional well-being and vitality were positively associated with supplement use among childhood cancer survivors. CONCLUSIONS: Supplement use is associated with both inadequate and excessive intake of specific nutrients, but positively impacts aspects of quality of life among childhood cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adulto , Humanos , Niño , Estudios de Cohortes , Calcio , Calidad de Vida , Neoplasias/epidemiología , Neoplasias/terapia , Suplementos Dietéticos , Dieta , Vitamina A
4.
Pediatr Blood Cancer ; 70(1): e30052, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36308423

RESUMEN

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.


Asunto(s)
Preservación de la Fertilidad , Enfermedades Hematológicas , Infertilidad , Neoplasias , Adolescente , Niño , Humanos , Femenino , Preservación de la Fertilidad/métodos , Neoplasias/terapia , Oncología Médica , Derivación y Consulta , Enfermedades Hematológicas/terapia
5.
Pediatr Blood Cancer ; 70(8): e30448, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37243931

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Metales Pesados , Neoplasias , Reserva Ovárica , Femenino , Humanos , Adolescente , Niño , Ovario , Sobrevivientes , Hormona Antimülleriana , Neoplasias/tratamiento farmacológico
6.
Pediatr Blood Cancer ; 70 Suppl 5: e30611, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37548483

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Salud Sexual , Niño , Adolescente , Adulto Joven , Humanos , Adulto , Sobrevivientes , Neoplasias/complicaciones , Neoplasias/terapia , Supervivencia
7.
Pediatr Blood Cancer ; 70(8): e28437, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-34873822

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Salud Sexual , Niño , Adolescente , Adulto Joven , Humanos , Adulto , Sobrevivientes , Neoplasias/complicaciones , Neoplasias/terapia , Supervivencia
8.
Pediatr Blood Cancer ; 70 Suppl 5: e28854, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37381152

RESUMEN

In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status, and may under- or overestimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Posttreatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Preservación de la Fertilidad , Infertilidad , Neoplasias , Humanos , Masculino , Femenino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Fertilidad , Sobrevivientes/psicología , Preservación de la Fertilidad/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Neoplasias/psicología
9.
J Assist Reprod Genet ; 40(10): 2391-2400, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37584730

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Humanos , Niño , Adulto Joven , Femenino , Masculino , Neoplasias/epidemiología , Neoplasias/complicaciones , Fertilidad , Sobrevivientes , Anticoncepción/métodos , Anticonceptivos
10.
BMC Public Health ; 22(1): 1696, 2022 09 07.
Artículo en Inglés | MEDLINE | ID: mdl-36071389

RESUMEN

BACKGROUND: HPV-related anal cancer occurs in excess rates among people living with HIV (PLWH) and has been increasing in incidence. The HPV vaccine is an effective and safe approach to prevent and reduce the risk of HPV-related disease. Yet, HPV vaccine programs tailored and implemented in the HIV population are lagging for this high-risk group. METHODS: A pre-post intervention study design will be used to tailor, refine, and implement the 4 Pillars™ Practice Transformation Program to increase HPV vaccination among PLWH. Guided by the RE-AIM framework, the CHAMPS study will provide training and motivation to HIV providers and clinic staff to recommend and administer the HPV vaccination within three HIV clinics in Georgia. We plan to enroll 365 HIV participants to receive HPV education, resources, and reminders for HPV vaccination. Sociodemographic, HPV knowledge, and vaccine hesitancy will be assessed as mediators and moderators for HPV vaccination. The primary outcome will be measured as an increase in uptake rate in initiation of the HPV vaccine and vaccine completion (secondary outcome) compared to historical baseline vaccination rate (control). DISCUSSION: The proposed study is a novel approach to address a serious and preventable public health problem by using an efficacious, evidence-based intervention on a new target population. The findings are anticipated to have a significant impact in the field of improving cancer outcomes in a high-risk and aging HIV population. TRIAL REGISTRATION: NCT05065840; October 4, 2021.


Asunto(s)
Infecciones por VIH , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Instituciones de Atención Ambulatoria , Infecciones por VIH/prevención & control , Humanos , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus/uso terapéutico , Vacunación
11.
BMC Pediatr ; 22(1): 541, 2022 09 12.
Artículo en Inglés | MEDLINE | ID: mdl-36096775

RESUMEN

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.


Asunto(s)
Alphapapillomavirus , Supervivientes de Cáncer , Neoplasias , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Cuidados Posteriores , Niño , Humanos , Papillomaviridae , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/prevención & control , Ensayos Clínicos Controlados Aleatorios como Asunto
12.
J Assist Reprod Genet ; 39(12): 2857-2864, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36447078

RESUMEN

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.


Asunto(s)
Supervivientes de Cáncer , Infertilidad , Neoplasias , Humanos , Adulto , Masculino , Femenino , Adolescente , Adulto Joven , Supervivientes de Cáncer/psicología , Calidad de Vida , Fertilidad , Infertilidad/psicología , Sobrevivientes/psicología , Neoplasias/terapia
13.
Lancet Oncol ; 22(2): e68-e80, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33539755

RESUMEN

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.


Asunto(s)
Supervivientes de Cáncer , Preservación de la Fertilidad/ética , Guías como Asunto , Neoplasias/epidemiología , Adolescente , Adulto , Niño , Progresión de la Enfermedad , Femenino , Preservación de la Fertilidad/tendencias , Humanos , Masculino , Neoplasias/complicaciones , Neoplasias/patología , Neoplasias/terapia , Adulto Joven
14.
Cancer ; 127(20): 3840-3846, 2021 10 15.
Artículo en Inglés | MEDLINE | ID: mdl-34255345

RESUMEN

BACKGROUND: Proton therapy may reduce cognitive deficits after radiotherapy among brain tumor survivors, although current data are limited to retrospective comparisons between historical cohorts. The authors compared intelligence quotient scores within a case-matched cohort of children with medulloblastoma treated with proton radiation (PRT) or photon radiation (XRT) over the same time period. METHODS: Among 88 consecutive patients with standard-risk medulloblastoma treated with PRT or XRT at 2 institutions from 2000 to 2009, 50 were matched 1:1 (25 with PRT and 25 with XRT) according to age, gender, date of diagnosis, histology, radiation boost, and craniospinal irradiation dose. One-way analyses of variance were performed to compare the Full-Scale Intelligence Quotient (FSIQ) and associated index scores between the 2 cohorts. RESULTS: Neurocognitive data were available for 37 survivors (17 with PRT and 20 with XRT) from the matched cohort. The mean age was 8.5 years (SD, 4.14 years). The median follow-up was 5.3 years (range, 1.0-11.4 years) and 4.6 years (range, 1.1-11.2 years) for the PRT and XRT cohorts, respectively (P = .193). Patients treated with PRT had significantly higher mean FSIQ (99.6 vs 86.2; P = .021), verbal (105.2 vs 88.6; P = .010), and nonverbal scores (103.1 vs 88.9; P = .011) than the XRT-treated cohort. Differences in processing speed (82.9 vs 77.2; P = .331) and working memory (97.0 vs 92.7; P = .388) were not statistically significant. CONCLUSIONS: Radiotherapy-associated cognitive effects appear to be more attenuated after proton therapy. Comprehensive prospective studies are needed to appropriately evaluate the neurocognitive advantages of proton therapy.


Asunto(s)
Neoplasias Cerebelosas , Meduloblastoma , Terapia de Protones , Neoplasias Cerebelosas/radioterapia , Niño , Cognición/efectos de la radiación , Humanos , Meduloblastoma/radioterapia , Terapia de Protones/efectos adversos , Protones , Estudios Retrospectivos
15.
Pediatr Blood Cancer ; 68(6): e29013, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33742546

RESUMEN

BACKGROUND: Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy. METHOD: Adaptation of CAP for SCP into a three-session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self-report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. RESULTS: Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. CONCLUSIONS: CAP for SCP is a patient-centered first-line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.


Asunto(s)
Adaptación Psicológica , Anemia de Células Falciformes/patología , Dolor Crónico/terapia , Terapia Cognitivo-Conductual/métodos , Manejo del Dolor/métodos , Adolescente , Niño , Hemoglobina Falciforme/genética , Humanos , Dimensión del Dolor , Atención Dirigida al Paciente/métodos , Psicoterapia de Grupo/métodos , Cumplimiento y Adherencia al Tratamiento/psicología
16.
Pediatr Blood Cancer ; 68(12): e29229, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34245209

RESUMEN

BACKGROUND: Sexual dysfunction (SD) is a common yet underrecognized concern among childhood cancer survivors (CCS). CCS who are now adolescent and young adult (AYA-CCS) identify SD as an unmet need. This study sought to explore AYA-CCS preferences on how, when, where, and by whom SD-focused communication should occur. PROCEDURE: This qualitative study utilized semi-structured interviews to explore AYA-CCS (now aged 15-24 years) experiences with, and preferences for, SD conversations. Thematic analysis methodology guided interpretation; themes were clustered into categories of who, how, when, and where SD conversations should occur. RESULTS: AYA-CCS highlighted the importance of patient-provider rapport to facilitate SD conversations, but did not have consistent preferences regarding provider type or specialty. Providers should reduce discomfort by normalizing ongoing, personalized conversations. Some AYA-CCS mentioned that notification that such a conversation is going to occur would be appreciated, and most were in favor of a screening tool to facilitate conversations. Preferences for when and where SD conversations should occur were centered on maximizing privacy. CONCLUSIONS: SD is an inadequately addressed concern in AYA-CCS, and providers must familiarize themselves with AYA-CCS preferences for discussing SD to reduce communication barriers and address this unmet need. In addition to corroborating prior studies' findings such as normalizing ongoing SD conversations, this study demonstrated novel ideas for reducing barriers, including use of a notification to prepare them prior to SD conversations, favoring the use of a screening tool, and the importance of establishing rapport prior to the SD conversations.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Disfunciones Sexuales Fisiológicas , Adolescente , Niño , Detección Precoz del Cáncer , Humanos , Investigación Cualitativa , Adulto Joven
17.
Pediatr Blood Cancer ; 68(7): e28978, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33629820

RESUMEN

BACKGROUND: Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision making in this population. This study explored FP communication among mothers, fathers, and their male adolescents newly diagnosed with cancer. PROCEDURE: Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews 1-2 months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis. RESULTS: Five process themes emerged: (1) reliance on health care team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with health care providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent's future partner's desire for biological parenthood (primarily parents); (3) banking while it is a viable option; (4) openness to alternative parenthood options (e.g., adoption/fostering, primary parents). CONCLUSIONS: Understanding variation in what family members discuss and consider relevant when making FP decisions is an important step toward improving pediatric oncofertility care. Interventions are needed to facilitate family FP-related conversations and optimize decisional satisfaction over time.


Asunto(s)
Preservación de la Fertilidad , Neoplasias , Adolescente , Comunicación , Toma de Decisiones , Femenino , Humanos , Masculino , Madres , Neoplasias/terapia , Padres
18.
J Pediatr Psychol ; 46(10): 1149-1158, 2021 10 18.
Artículo en Inglés | MEDLINE | ID: mdl-34333651

RESUMEN

OBJECTIVE: Approximately half of male childhood cancer survivors experience impaired fertility, yet fertility preservation (FP) remains underutilized. Although parent recommendation influences adolescents' decision-making, parents may be uncertain and/or underrate their sons' parenthood goals. This study assessed parent-adolescent and family-level concordance regarding adolescent fertility perspectives (i.e., values, goals) and associations with FP attempts. METHODS: A prospective pilot study examined the impact of a family-centered values clarification tool (FAST) on banking attempts among adolescent males newly diagnosed with cancer at risk for infertility. The FAST assessed adolescent and parent perceptions of adolescents' fertility values and goals (i.e., perceived threat of infertility, perceived benefits/barriers to banking). Parent-adolescent concordance and family-level concordance on fertility perspectives were examined, along with associations with banking attempts and salient demographic factors. RESULTS: Ninety-eight participants (32 adolescents aged 12-20, 37 mothers, 29 fathers) from 32 families completed the FAST before treatment initiation. Parent-adolescent dyads were concordant on approximately one-half of responses. Banking attempts were associated with higher family-level concordance regarding perceived benefits, r(32) = .40, p = .02. Older adolescent age was associated with higher family-level concordance regarding perceived threat, r(31) = .37, p = .04, and benefits, r(32) = .40, p = .03. Fathers' education was associated with higher family-level concordance regarding barriers, r(21) = .53, p = .01. CONCLUSIONS: When parents were concordant with their son's fertility values and goals, particularly perceived benefits, adolescents were more likely to attempt FP. Clinicians should facilitate sharing of fertility perspectives within families before cancer treatment, especially with younger adolescents. Psychosocial support for families facing FP decisions is recommended at diagnosis and across the care continuum.


Asunto(s)
Neoplasias , Padres , Adolescente , Niño , Femenino , Humanos , Masculino , Proyectos Piloto , Estudios Prospectivos , Espermatozoides , Encuestas y Cuestionarios
19.
J Assist Reprod Genet ; 38(6): 1561-1569, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33564937

RESUMEN

PURPOSE: Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts. METHODS: A prospective pilot study was conducted among families of males (12-25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts. RESULTS: Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents' report of perceived threat (rpb=.45, p=.01) and benefits (rpb=.57, p=.01). Only mothers' proxy reports of adolescent perceived threat (rpb=.42, p=.01) and benefits (rpb=.47, p=.003) were associated with banking attempts, while fathers' self-reported perceived benefits (rpb=.43, p=.03), self-reported barriers (rpb=.49, p=.01), and proxy reports of adolescent perceived threat (rpb=.38, p=.04) and benefits (rpb=.59, p=.02) were associated with banking attempts. CONCLUSION: Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.


Asunto(s)
Preservación de la Fertilidad , Fertilidad/genética , Preservación de Semen , Bancos de Esperma , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Madres , Neoplasias/epidemiología , Neoplasias/patología , Estudios Prospectivos , Espermatozoides/crecimiento & desarrollo , Adulto Joven
20.
J Sex Med ; 17(10): 1981-1994, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32723681

RESUMEN

INTRODUCTION: There is a growing population of childhood cancer survivors at risk for adverse outcomes, including sexual dysfunction. AIM: To estimate the prevalence of and risk factors for sexual dysfunction among adult female survivors of childhood cancer and evaluate associations between dysfunction and psychological symptoms/quality of life (QOL). METHODS: Female survivors (N = 936, mean 7.8 ± 5.6 years at diagnosis; 31 ± 7.8 years at evaluation) and noncancer controls (N = 122) participating in the St. Jude Lifetime Cohort Study completed clinical evaluations, Sexual Functioning Questionnaires (SFQ), and Medical Outcomes Survey Short Forms 36 (SF-36). Linear models compared SFQ scores between sexually active survivors (N = 712) and controls; survivors with scores <10th percentile of controls were classified with sexual dysfunction. Logistic regression evaluated associations between survivor characteristics and sexual dysfunction, and between sexual dysfunction and QOL. OUTCOMES: Sexual dysfunction was defined by scores <10th percentile of noncancer controls on the SFQ overall, as well as the domains of arousal, interest, orgasm, and physical problems, while QOL was measured by scores on the SF-36 with both physical and mental summary scales. RESULTS: Sexual dysfunction was prevalent among 19.9% (95% CI 17.1, 23.1) of survivors. Those diagnosed with germ cell tumors (OR = 8.82, 95% CI 3.17, 24.50), renal tumors (OR = 4.49, 95% CI 1.89, 10.67), or leukemia (OR = 3.09, 95% CI 1.50, 6.38) were at greater risk compared to controls. Age at follow-up (45-54 vs 18-24 years; OR = 5.72, 95% CI 1.87, 17.49), pelvic surgery (OR = 2.03, 95% CI 1.18, 3.50), and depression (OR = 1.96, 95% CI 1.10, 3.51) were associated with sexual dysfunction. Hypogonadism receiving hormone replacement (vs nonmenopausal/nonhypogonadal; OR = 3.31, 95% CI 1.53, 7.15) represented an additional risk factor in the physical problems (eg, vaginal pain and dryness) subscale. Survivors with sexual dysfunction, compared to those without sexual dysfunction, were more likely to score <40 on the physical (21.1% vs 12.7%, P = .01) and mental health (36.5% vs 18.2%, P < .01) summary scales of the SF-36. Only 2.9% of survivors with sexual dysfunction reported receiving intervention. CLINICAL IMPLICATIONS: Health care providers should be aware of the increased risk of sexual dysfunction in this growing population, inquire about symptomology, and refer for appropriate intervention. STRENGTHS & LIMITATIONS: Strengths of this study include the use of a validated tool for evaluating sexual function in a large population of clinically assessed female childhood cancer survivors. Limitations include potential for selection bias, and lack of clinically confirmed dysfunction. CONCLUSION: Sexual dysfunction is prevalent among female childhood cancer survivors and few survivors receive intervention; further research is needed to determine if those with sexual dysfunction would benefit from targeted interventions. Bjornard KL, Howell CR, Klosky JL, et al. Psychosexual Functioning of Female Childhood Cancer Survivors: A Report From the St. Jude Lifetime Cohort Study. J Sex Med 2020;17:1981-1994.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Disfunciones Sexuales Psicológicas , Adulto , Supervivientes de Cáncer/psicología , Niño , Estudios de Cohortes , Femenino , Humanos , Calidad de Vida , Disfunciones Sexuales Psicológicas/etiología , Sobrevivientes
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