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This study aimed to characterize unmet reproductive health needs of female young adult survivors of childhood cancer (YASCC), as understood by oncology providers (N = 10) caring for this patient population. Providers completed brief online questionnaires and a one-time semi-structured interview. Descriptive statistics characterized quantitative data, and rapid qualitative analysis identified themes in interview data. In survey data, providers rated fertility as a top concern among YASCC. Qualitative data identified specific under-addressed reproductive and sexual health information needs for patients and also for their providers. The results provide preliminary knowledge to inform the development of behavioral interventions to address patients' unmet needs.
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BACKGROUND: Young adult (YA) cancer survivors are a growing, yet underserved population who often face significant and long-lasting cancer-related physical (e.g., pain, fatigue) and emotional (e.g., psychological distress) symptoms. Post-treatment symptoms can persist, disrupting YA's abilities to complete goals consistent with their developmental stage (e.g., completing their education, achieving autonomy and independence, building their careers, establishing peer and romantic relationships, building their families). While symptom management has been identified as a significant issue in YA's transitions to survivorship, the symptom management needs of this population largely go unmet. METHODS: We developed an eight-session, group-based behavioral intervention that is delivered using videoconferencing to address the unique symptom management needs of YA cancer survivors. The intervention was developed in conjunction with YA survivors, leading to the novel combination of traditional behavioral symptom coping strategies, home-based physical activity, strategies from contemporary cognitive-behavioral approaches (e.g., those derived from acceptance and commitment therapy, strategies to foster self-compassion), concepts from meaning centered psychotherapy, and behavioral strategies to improve communication and health care engagement. Participants receive printed intervention materials and access to a study-specific mobile application, both of which are used throughout the program. Herein, we report on a pilot study that is in progress. Recruitment has been completed. YA cancer survivors were recruited in cohorts of n = 10 or n = 11 (n = 61) and randomized to the intervention or waitlist control arms. All participants completed a baseline assessment and four additional assessments over 1 year, with each involving a battery of self-report measures. DISCUSSION: The primary objective is to evaluate intervention feasibility and acceptability. As a secondary objective, we will examine patterns of change in intervention targets (i.e., pain, fatigue, emotional distress, symptom interference). Changes from baseline among intervention targets will be estimated for each patient and compared between arms using unadjusted statistical testing. Unadjusted and adjusted multilevel modeling will be used to estimate the effect of the intervention on changes in intervention targets. Interaction models will be used to compare the trajectory of change over time between arms. We expect that this pilot trial will inform our future approach to identify, recruit, and retain participants and provide preliminary data to support a larger, fully powered randomized controlled trial evaluating the intervention. TRIAL REGISTRATION: NCT04035447 at clinicaltrials.gov; registered July 29, 2019.
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Female survivors of young adult (YA) cancers are at risk of fertility impacts following cancer treatment. For these women, fertility-related distress is both prevalent and persistent. Yet there is little research regarding survivors' perspectives on alternative family-building options, particularly adoption. This exploratory secondary data analysis analyzed semistructured interviews and explored survivors' views of adoption. Overall, female YA survivors reported openness to adoption as a possible substitute for biological conception and an alternative to fertility preservation. It is imperative that this population receives support in decision-making around and consideration of the unique barriers to adoption for cancer survivors.
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Supervivientes de Cáncer , Humanos , Femenino , Supervivientes de Cáncer/psicología , Adulto , Adulto Joven , Adopción/psicología , Neoplasias/psicología , Neoplasias/tratamiento farmacológico , Neoplasias/complicaciones , Adolescente , Preservación de la Fertilidad/métodos , Preservación de la Fertilidad/psicología , PercepciónRESUMEN
Purpose: To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. Methods: Female YAs (N = 18; aged 21-36) with a history of cancer and oncology providers (N = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. Results: Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. Conclusion: Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care.
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Toma de Decisiones , Preservación de la Fertilidad , Neoplasias , Humanos , Femenino , Preservación de la Fertilidad/economía , Preservación de la Fertilidad/métodos , Preservación de la Fertilidad/psicología , Adulto , Neoplasias/psicología , Neoplasias/economía , Adulto JovenRESUMEN
Gender-based violence is prevalent globally, yet the impacts of sexual and physical violence on women's experiences of routine gynecologic care are not well understood. The purpose of this systematic review of quantitative research is to describe (a) psychological distress and pain related to gynecologic exams among female survivors of sexual and physical violence and (b) differences in distress or pain between survivors and women without this history. Fourteen articles based on 12 discrete studies met the inclusion criteria. Studies were heterogeneous, with a moderate risk of bias; therefore, a descriptive summary approach was utilized rather than a meta-analytic approach. Synthesized results indicated that survivors of violence experience mild-to-severe levels of distress and mild-to-moderate levels of pain related to gynecologic exams. The findings suggest that survivors of sexual or physical violence experience higher levels of distress than women without this history (i.e., moderate to severe), and this difference was further accentuated among women with more severe posttraumatic stress symptoms (PTSS). Differences in pain by violence history and PTSS severity were not consistently observed, possibly due to a lack of variability in ratings and small sample sizes. Additional research is needed that bolsters the measurement of exam-related distress and pain, adjusts for confounding variables, and explores mechanisms by which sexual and physical violence impact care experiences. Further empirical work will be critical to developing interventions at the patient and provider levels to improve women's experiences of care.
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Examen Ginecologíco , Distrés Psicológico , Sobrevivientes , Humanos , Femenino , Examen Ginecologíco/psicología , Sobrevivientes/psicología , Trastornos por Estrés Postraumático/psicología , Trastornos por Estrés Postraumático/diagnóstico , Abuso Físico/psicología , Abuso Físico/estadística & datos numéricos , Dolor/psicología , Delitos Sexuales/psicologíaRESUMEN
OBJECTIVE: Spiritual care is an important part of healthcare, especially when patients face a possible diagnosis of a life-threatening disease. This study examined the extent to which women undergoing core-needle breast biopsy desired spiritual support and the degree to which women received the support they desired. METHODS: Participants (N = 79) were women age 21 and older, who completed an ultrasound- or stereotactic-guided core-needle breast biopsy. Participants completed measures of spiritual needs and spiritual care. Medical and sociodemographic information were also collected. Independent sample t-tests and chi-square tests of examined differences based on demographic, medical, and biopsy-related variables. RESULTS: Forty-eight participants (48/79; 60.8%) desired some degree of spiritual care during their breast biopsy, and 33 participants (33/78; 42.3%) wanted their healthcare team to address their spiritual needs. African American women were significantly more likely to desire some type of spiritual support compared to women who were not African American. Among the 79 participants, 16 (20.3%) reported a discrepancy between desired and received spiritual support. A significant association between discrepancies and biopsy results was found, χâ2(1) = 4.19, P = .04, such that 2 (7.4%) of 27 participants with results requiring surgery reported discrepancies, while 14 (26.9%) of 52 participants with a benign result reported discrepancies. CONCLUSION: Most women undergoing core-needle breast biopsy desired some degree of spiritual care. Although most reported that their spiritual needs were addressed, a subset of women received less care than desired. Our results suggest that healthcare providers should be aware of patients' desires for spiritual support, particularly among those with benign results.
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For years, breast imaging has been the model in radiology for patient communication, and more recently, it has been a leader in the growing patient- and family-centered approach to care. To maintain high levels of patient satisfaction during image-guided core-needle breast biopsies, the radiologist should understand patient perspectives so that interventions can be developed to manage patient concerns. This article reviews patient perspectives before, during, and after imaging-guided breast biopsies, and it describes strategies to help optimize the experiences of patients as they navigate the process.