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BACKGROUND: Adults with cancer have higher rates of comorbidity compared to those without cancer, with excess burden in people from lower socioeconomic status (SES). Social deprivation, based on geographic indices, broadens the focus of SES to include the importance of "place" and its association with health. Further, social support is a modifiable resource found to have direct and indirect effects on health in adults with cancer, with less known about its impact on comorbidity. PURPOSE: We prospectively examined associations between social deprivation and comorbidity burden and the potential buffering role of social support. METHODS: Our longitudinal sample of 420 adults (Mage = 59.6, SD = 11.6; 75% Non-Hispanic White) diagnosed with cancer completed measures at baseline (~6 months post-diagnosis) and four subsequent 3-month intervals for 1 year. RESULTS: Adjusting for age, cancer type, and race/ethnicity, we found a statistically significant interaction between social support and the effect of social deprivation on comorbidity burden (ß = -0.11, pâ =â 0.012), such that greater social support buffered the negative effect of social deprivation on comorbidity burden. CONCLUSION: Implementing routine screening for social deprivation in cancer care settings can help identify patients at risk of excess comorbidity burden. Clinician recognition of these findings could trigger a referral to social support resources for individuals high on social deprivation.
This study examines the complex interplay among neighborhood-level deprivation, social support, and comorbidity burden in adults diagnosed with cancer. We know that individuals with cancer often face health challenges, especially those from lower socioeconomic backgrounds. This research expands the scope beyond just income or education level to include the impact of "place" or social deprivation on health outcomes. The study followed 420 adults diagnosed with cancer over the course of a year, examining how social deprivation and social support influenced their comorbidity burden. Interestingly, findings suggest that social support can act as a buffer against the negative effects of social deprivation on comorbidity burden. These results highlight the importance of considering not only just medical treatment but also the social context in which patients live when managing cancer care. Identifying patients at risk of increased comorbidity burden due to social deprivation and providing them with appropriate social support resources could significantly improve their overall health.
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BACKGROUND: While many studies have investigated the sociodemographic, clinical, and psychosocial factors associated with perceived positive change after cancer, longitudinal work examining how emotion regulation, and resilience impact perceptions of life change among newly diagnosed cancer survivors is lacking. PURPOSE: This study examined the prevalence of perceived positive and negative life changes following cancer and explored the role of emotion regulation and resilience on perceived change over 6 months. METHODS: Data from 534 recent survivors of breast, prostate, or colorectal cancer (Mage = 59.3, 36.5% male) collected at baseline (Time 1) and 6-month follow-up (Time 2) were analyzed. Multivariate linear regressions were estimated separately to examine if resilience or emotion regulation were associated with perceived change at Time 2 after controlling for relevant sociodemographic and psychosocial measures. RESULTS: At both time points, greater than 90% of participants reported at least one perceived positive change while fewer than a third reported a negative change. Indices of emotion regulation and resilience were positively related to perceived positive change at both time points and negatively related to perceived negative change at Time 1. Emotion regulation but not resilience was negatively associated with perceived negative change at Time 2. CONCLUSIONS: Findings suggest that cancer survivors who are less resilient and struggle with emotion regulation are more susceptible to perceptions of fewer positive and greater negative life changes after cancer. As such, psychosocial interventions should be developed to promote resilience and emotional regulation in cancer survivors.
Disparate studies have examined the adverse consequences of cancer and its treatment, as well as perceived positive changes in different aspects of life following a cancer diagnosis. However, few studies have assessed both positive and negative perceived life changes concurrently over time or investigated whether resilience and emotion regulation influence perceived negative and positive changes. We analyzed prospective survey data from 534 recently diagnosed survivors of breast, prostate, or colorectal cancer collected at baseline assessment and 6-month follow-up. Reports of positive change were much more common than reports of negative change. Moreover, reports of positive change and negative change did not differ between the two assessment points. Cancer survivors with greater resilience and emotional approach coping at baseline reported more positive life changes 6 months later while those with low self-efficacy and higher emotion dysregulation at baseline reported more negative life changes 6 months later. These findings highlight self-efficacy, resilience, emotional approach coping, and emotional regulation abilities as modifiable factors that can be targeted by clinicians and therapists to decrease the likelihood of patient-perceived negative change and increase perceived positive change.
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Sobreviventes de Câncer , Regulação Emocional , Neoplasias , Resiliência Psicológica , Humanos , Masculino , Feminino , Estudos Longitudinais , Neoplasias/psicologia , Qualidade de Vida/psicologiaRESUMO
Following treatment, cancer survivors often experience pain that negatively impacts their quality of life. Although both anxiety and fear of cancer recurrence (FCR) have been shown to exacerbate pain interference, less is known about either the temporal relationship between anxiety/FCR and pain interference or modifiable cognitive/emotional factors that might moderate that relationship among cancer survivors. This longitudinal study aims to advance our understanding of the impact of both anxiety and FCR following primary cancer treatment on subsequent pain interference. We also examined potentially modifiable moderators (i.e., cancer-related illness beliefs and emotion regulation difficulties) of the relationship between anxiety/FCR and subsequent pain interference. Adults (N = 397; 67% female; Mage = 59.1 years) diagnosed with breast, colorectal, or prostate cancer completed self-report measures at baseline (average of 2.5 months following treatment completion) and at 6-month follow-up. Both greater anxiety and FCR not only predicted subsequent pain interference, but also predicted increases in pain interference over time. Additionally, complex interaction patterns were observed between anxiety and the potential moderators on pain interference. Specifically, lower Personal Control beliefs and higher Consequences beliefs were associated with greater pain interference for those with lower levels of anxiety/FCR. Emotion regulation difficulties also moderated the anxiety-pain interference link (i.e., was more strongly associated with greater pain interference at lower levels of anxiety), but not the FCR-pain link. Chronicity beliefs did not interact with anxiety or FCR in predicting pain interference. This study advances our understanding of the role of anxiety/FCR on pain interference over time as well as potential psychological treatment targets for individuals at greater risk for longer-term pain following cancer treatment.
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PURPOSE: The extent to which adults with cancer during early survivorship experienced disruptions in care due to COVID-19 pandemic, as well as their experiences with the transition to telemedicine, remains understudied. METHODS: We examined cancer care disruption and satisfaction with telemedicine due to COVID-19 in 361 adults (Mage = 59.42, SD = 11.3) with breast, prostate or colorectal cancer during early survivorship. The Telemedicine Satisfaction and Usefulness Questionnaire (TSUQ) and patient self-report Cancer Care Disruption Index (CCDI) was administered via RedCap survey. RESULTS: The most prevalent areas of patient-reported cancer care disruption included supportive care appointments canceled/postponed (57%), in-person appointments changed to virtual appointments (56%), social work services canceled (32%), palliative care appointments canceled/postponed (24%), elective surgeries related to cancer postponed (23%), and screening tests postponed (19%). Regarding patient satisfaction with telemedicine, 78.0% "agree" or "strongly agree" that they were satisfied with the overall telemedicine system. Most survivors reported satisfaction with their doctor dealing with problems (88.2%), doctors answering patient questions (92.7%), and engaged patients in care (86.1%), However, 49.3% of cancer patients disagreed that virtual visits are as satisfying as in-person visits and 35.6% were dissatisfied with the lack of physical contact during virtual visits. CONCLUSION: The COVID-19 pandemic disrupted cancer survivorship care, with supportive care, social work services, and mode of delivery (in-person vs. virtual) particularly affected. The downstream impact of cancer care disruption in those living with cancer during the pandemic as well as the quality of telehealth modality as part of cancer survivorship care delivery await future investigation.
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COVID-19 , Neoplasias , Telemedicina , Adulto , Masculino , Humanos , Satisfação do Paciente , Sobrevivência , Pandemias , Neoplasias/terapiaRESUMO
A young parent's death is an unexpected event that incurs family stress and grief for the surviving parent and young children. However, few studies have examined widowed parents' grief experiences and parent-child interactions following a co-parent's death. Guided by phenomenology, this qualitative study examined the lived experiences of (N = 12) surviving parents grieving the loss of their co-parent. Data were collected using semi-structured interviews and analyzed using an inductive analytic procedure. Findings included themes of (1) not showing grief with child; (2) talking through grief/emotions with child; (3) maintaining connection between deceased parent and child; (4) timing of sharing things with children; and (5) utilizing bereavement and group support. These findings suggest that support services for surviving parents include providing information to them about the timing of when to share mementos with children and psychoeducation on emotion sharing and masking as part of the grief process with young children.
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INTRODUCTION: We compared the return-to-work interval (RTWI) after radical retro-pubic prostatectomy (RRP) and robot-assisted laparoscopic prostatectomy (RALP) in men being treated for early-stage prostate cancer. MATERIALS AND METHODS: We mailed a 28-item questionnaire to a random sample of 2,696 patients who either had RRP from 1995 to 2004 or RALP from 2004 to 2011. RESULTS: We received analyzable questionnaires from 315 patients; 178 had RALP and 137 had RPP. The median RTWI was shorter in the RALP group than in the RRP group (3 versus 4 weeks, p = .016). The percent of subjects who had not returned to work 4 weeks after surgery was 23.6% for RALP and 38.2% for RRP (p = .010). In multivariate regression analysis, surgical approach was a significant predictor of RTWI independent of other social/clinical variables that were associated with either surgical approach or RTWI (p = .014). CONCLUSION: Our data support a shortening of RTWI by RALP.
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Laparoscopia , Prostatectomia , Neoplasias da Próstata , Retorno ao Trabalho/estatística & dados numéricos , Procedimentos Cirúrgicos Robóticos , Intervenção Médica Precoce/métodos , Intervenção Médica Precoce/estatística & dados numéricos , Humanos , Laparoscopia/métodos , Laparoscopia/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Prostatectomia/métodos , Prostatectomia/estatística & dados numéricos , Neoplasias da Próstata/patologia , Neoplasias da Próstata/cirurgia , Pesquisa Qualitativa , Procedimentos Cirúrgicos Robóticos/métodos , Procedimentos Cirúrgicos Robóticos/estatística & dados numéricos , Inquéritos e Questionários , Fatores de Tempo , Estados UnidosRESUMO
BACKGROUND: The extent to which cancer exacerbates or creates new health conditions is a long-standing, unanswered question. The current prospective study examined the short-term impact of cancer on the functioning, development of, and worsening of age-related health conditions among older adults who develop cancer compared with age-matched controls. METHODS: Surveillance, Epidemiology, and End Results registry data were linked with Medicare Health Outcomes Survey (MHOS) data. A total of 921 eligible cases were Medicare beneficiaries with diagnosis of breast, colorectal, lung, or prostate cancer made between their baseline and follow-up MHOS. Using propensity score matching, 4605 controls without cancer were matched from the MHOS. Analysis of covariance and logistic regression were used to examine changes in physical functioning, activities of daily living, age-related conditions, and exacerbation of preexisting conditions for cases compared with controls. RESULTS: Cancer groups demonstrated greater declines in activities of daily living and physical function compared with controls (mean, -1.53 [standard error, 0.14]), with the greatest change noted for patients with lung cancer (mean, -6.72 [standard error, 0.94]). Having a cancer diagnosis increased the risk of depression but did not increase the odds of developing arthritis in the hand and/or hip, urinary incontinence (except for prostate cancer), or vision and/or hearing problems. Having a cancer diagnosis also did not exacerbate the severity of arthritis or foot neuropathy. CONCLUSIONS: The findings of the current study suggest that cancer is a stronger driver for declines in physical functioning and an increased risk of depression in older adults. Interventions are needed to decrease these risks. Clinicians need to prepare patients and families for changes in functioning levels and interventions that limit the declines for older patients with cancer are needed. Cancer 2016;122:1946-53. © 2016 American Cancer Society.
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Envelhecimento/fisiologia , Neoplasias/fisiopatologia , Atividades Cotidianas , Fatores Etários , Idoso , Estudos de Casos e Controles , Feminino , Humanos , Masculino , Medicare , Estudos Prospectivos , Programa de SEER , Estados UnidosRESUMO
OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). METHODS: We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). RESULTS: Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). CONCLUSIONS: Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.
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Necessidades e Demandas de Serviços de Saúde , Controle Interno-Externo , Neoplasias/psicologia , Educação de Pacientes como Assunto , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Neoplasias/terapia , Inquéritos e Questionários , Sobreviventes/estatística & dados numéricos , Adulto JovemRESUMO
Although parental death increases the risks of negative developmental outcomes, some individuals report personal growth, an outcome that has received little attention. We tested a developmental cascade model of postloss growth in 244 parentally bereaved youth (ages 8-16 at baseline) from 156 families who participated in a randomized controlled trial of a family-based intervention, the Family Bereavement Program (FBP). Using five waves of data, the present study examined the prospective associations between the quality of parenting immediately following the FBP and postloss growth 6 and 15 years later, and whether these associations were mediated by changes in intra- and interpersonal factors (mediators) during the initial 11 months following the FBP. The mediators were selected based on the theoretical and empirical literature on postloss growth in youth. Results showed that improved quality of parenting immediately following the FBP was associated with increased support-seeking behaviors and higher perceived parental warmth at the 11-month follow-up, both of which were related to postloss growth at the 6-year follow-up and 15-year follow-up. No support was found for the other hypothesized mediators that were tested: internalizing problems, intrusive grief thoughts, and coping efficacy. To promote postloss growth for parentally bereaved youth, bereavement services should target parent-child relationships that help youth feel a sense of parental warmth and acceptance and encourage youth to seek parental support. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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Luto , Morte Parental , Adolescente , Humanos , Seguimentos , Pesar , Poder Familiar/psicologiaRESUMO
PURPOSE: To prospectively examine different trajectories of recovery, across different aspects of physical health and function and to examine trajectory class membership. METHODS: This prospective study enrolled 569 recently diagnosed adult cancer patients (Mage = 58.7) between 2019 and 2022 identified through the Rapid Case Ascertainment resource of The Yale Cancer Center. Patients were diagnosed with breast (63.8%), prostate (25.3%), or colorectal cancer (10.9%) within six-months of baseline assessment. Participants completed comprehensive psychosocial and health survey measures (SF-12) through REDCap at five time points. Growth mixture modeling examined unconditional distinct trajectories for four aspects of physical health and function. We fit logistic regression and multinomial logistic regression models to estimate associations between psychosocial predictors of trajectory class membership for each of the four aspects. RESULTS: We identified distinct trajectories of physical health and function. Over one-third (38.4%) of the sample experienced low and declining scores in their ability to accomplish work/regular daily activities due to physical health. Over half (54.9%) demonstrate moderately stable general health with no improvement over time. A small but significant subset of the sample (3%, 5.7%, 5%) was in the moderate and declining groups with sharp decline in physical function, bodily pain, and general health, after treatment. Different predictors of trajectory class membership were also found. CONCLUSIONS: Our results showed heterogeneity in physical health and function trajectories and different patterns of predictors for each aspect of physical health and function. Findings have the potential to inform screening and intervention efforts to help those who may need additional support.
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BACKGROUND: Non-Hodgkin lymphoma (NHL) is the fifth most common cancer among men and women. Patients with aggressive NHL receive intense medical treatments that can significantly compromise health-related quality of life (HRQOL). However, knowledge of HRQOL and its correlates among survivors of aggressive NHL is limited. METHODS: Self-reported data on HRQOL (physical and mental function, anxiety, depression, and fatigue) were analyzed for 319 survivors of aggressive NHL. Survivors 2 to 5 years postdiagnosis were selected from the Los Angeles County Cancer Registry. Bivariate and multivariable methods were used to assess the influence of sociodemographic, clinical, and cognitive health-appraisal factors on survivors' HRQOL. RESULTS: After accounting for other covariates, marital status was associated with all HRQOL outcomes (P < .05). Younger survivors reported worse mental function and higher levels of depression, anxiety, and fatigue (P < .01). Survivors who had more comorbid conditions or lacked private health insurance reported worse physical and mental function and higher levels of depression and fatigue (P < .05). Survivors who experienced a recurrence reported worse physical function and higher levels of depression and fatigue (P < .05). With the exception of a nonsignificant association between perceived control and physical function, greater perceptions of personal control and health competence were associated significantly with more positive HRQOL outcomes (P < .01). CONCLUSIONS: The current results indicated that survivors of aggressive NHL who are younger, are unmarried, lack private insurance, or experience greater illness burden may be at risk for poorer HRQOL. Cognitive health-appraisal factors were strongly related to HRQOL, suggesting potential benefits of interventions focused on these mutable factors for this population.
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Nível de Saúde , Linfoma não Hodgkin/reabilitação , Qualidade de Vida , Sobreviventes/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Cognição/fisiologia , Feminino , Humanos , Linfoma não Hodgkin/mortalidade , Linfoma não Hodgkin/patologia , Linfoma não Hodgkin/fisiopatologia , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Autoeficácia , Sobreviventes/psicologiaRESUMO
The objective of this study was to explore stigma related to breast cancer among Druze women and men and identify factors associated with low screening rates among Druze women. A sample of 270 Druze women and men completed an online questionnaire adapted to detect breast cancer stigma and internalized breast cancer stigma. Independent samples t-test results showed higher scores for men compared to women, at a significant level, on four of the Breast Cancer Stigma scales: awkwardness, avoidance, policy opposition, and personal responsibility. Independent samples t-test results also showed higher scores for men compared to women, at a significant level, on two of the Internalized Breast Cancer Stigma scales: stereotype endorsement and discrimination experience. These results suggest a need for psychoeducation about breast cancer screening for minority groups such as the Druze, with male partners of women who are diagnosed with breast cancer being the main target recipients.
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Neoplasias da Mama , Grupos Minoritários , Humanos , Masculino , Feminino , Israel , Estigma Social , EstereotipagemRESUMO
PURPOSE: Many cancer survivors experience psychological distress at some point during their care. The degree to which individuals perceive negative consequences of cancer has been associated with psychological distress, including anxiety and depression. Identifying psychosocial factors that buffer the effects of illness perceptions on distress may provide a target for intervention to improve the psychological health of cancer survivors. As such, the present study aimed to examine whether social support moderates the relationship between perceived negative consequences of cancer and psychological distress. METHODS: The current longitudinal study of 413 cancer survivors (64% female, 58% breast cancer, Mage = 59.68, SD = 11.41) examined social support as a potential moderator of the relationship, hypothesizing that greater overall perceived social support would buffer the relationship between perceived negative consequences of cancer and subsequent symptoms of anxiety and depression. RESULTS: Perceived negative consequences of cancer predicted anxiety and depression over time (p < .05), but social support had a buffering effect on the perceived negative consequences of cancer-anxiety relationship (ß = - .20, p < .001) as well as the perceived negative consequences of cancer-depression relationship (ß = - .11, p < .05). CONCLUSION: Results suggest that social support is a protective factor over time against the pathway of illness perceptions leading to psychological distress among cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Interventions that improve social support in cancer survivors may attenuate psychological distress and help support these individuals in their survivorship journey.
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OBJECTIVE: A more detailed understanding of unmet organizational support needs and workplace-based best practices for supporting cancer survivors is needed. METHODS: Ninety-four working breast cancer survivors responded to an open-ended survey question regarding the desired types of organizational support that were and were not received during early survivorship. We performed content-analysis of qualitative data. RESULTS: Major themes included instrumental support, emotional support, and time-based support. The need for flexible arrangements and reduced workloads was mostly met. Unmet needs included navigation/coordination, understanding/empathy, and time off for treatment and recovery. CONCLUSIONS: Organizational support can help cancer survivors manage their health and work roles, diminishing work-health conflict and turnover intent. Study findings can be used to design targeted interventions to fulfill cancer survivors' unmet organizational support needs, which may also apply to workers with other chronic health conditions.
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Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Neoplasias da Mama/terapia , Sobreviventes de Câncer/psicologia , Necessidades e Demandas de Serviços de Saúde , Sobreviventes/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients. METHODS: This was a population-based, multicenter study of 523 newly diagnosed AYA survivors (ages 15-39 years) of germ cell cancer (n = 204), non-Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15-20 years, 21-29 years, and 30-39 years). RESULTS: Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence. CONCLUSIONS: The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives.
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Neoplasias/psicologia , Psicologia do Adolescente , Fatores Socioeconômicos , Adulto Jovem , Adolescente , Adulto , Imagem Corporal , Feminino , Objetivos , Humanos , Relações Interpessoais , Masculino , Neoplasias/economia , Vigilância da População , Qualidade de Vida , Apoio Social , Sobreviventes/psicologiaRESUMO
Introduction: Women with BRCA1/2 mutations have a 11-72% increased risk of breast/ovarian cancers throughout their lifetime. The current study examines psychosocial differences between the current sample of BRCA1/2-positive women with and without cancer histories and three comparable United States (US) female samples without BRCA1/2 mutations. Methods: Sixty BRCA1/2-positive women (with and without cancer histories) were recruited through multiple private online support groups in the US. Participants completed an online survey outlining sociodemographic and genetic counseling information, and anxiety, stress, and health-related quality of life (HRQoL) outcomes. Outcomes were compared to three similar US female normative samples via independent samples t-test analyses. Results: State and trait anxiety (p = 0.00) and stress (p = 0.001) were significantly worse in the current sample of BRCA1/2-positive women compared comparable US female samples. All HRQoL domains were significantly better in the current sample except energy/vitality, which was significantly lower (p = 0.02) in the current sample. Results were stratified by cancer and recurrence status. Conclusions: This study provides insight into how a sample of BRCA1/2-positive women both with and without cancer fare post-genetic counseling as compared to three normative female populations. Results infer the need for additional education, patient-provider training, and mental health referrals to support this population in order to circumvent unintended consequences and to improve psychosocial health in those being tested for, and those who test positive for, BRCA1/2 genetic mutations.
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Introduction: It is estimated that 12.5% of women will be diagnosed with breast cancer and 1.10% with ovarian cancer during their lifetime. Although less common, women with these mutations have a 11-72% increased risk of breast/ovarian cancers and are hereditary. Genetic testing/counseling presents the opportunity to identify carriers of BRCA1/2 genetic mutations before a cancer diagnosis. Methods: Thirty-four BRCA1/2-positive women (with and without histories of breast/ovarian cancers) were recruited through online national support groups to gain a better understanding of their genetic testing/counseling perceptions and experiences. After confirming eligibility, they were invited to participate in either a telephone or webcam interview. Interview transcripts were analyzed using qualitative thematic text analysis and descriptive coding techniques. Results: Six major themes emerged, capturing the perceptions and experiences of genetic testing/counseling for these women: 1) Emotional Reactions to Results and Genetic Counseling, 2) Future Recommendations, 3) Family Solidarity and Support, 4) Experiences with the Healthcare System, 5) Preventive Concerns and Decisions, and 6) Sources Affecting Perceived Risk. Two subthemes also emerged within the first theme, which are termed "Pre-vivor," and "Testing Intuition." Conclusions: Participants indicated that genetic testing/counseling improvements would be helpful for women in this population surrounding quality care, including sensitivity training for healthcare professionals involved in testing/counseling, additional educational resources, and increased emotional and financial support. Although these recommendations may be beneficial, more widespread research with greater generalizability to disparate groups may be necessary prior to implementation.
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Resilience is highly relevant in the context of cancer, and understanding how survivors adapt and potentially thrive following their diagnosis and treatment may provide insights into better supports and interventions to promote healthier survivorship. In this paper, we characterize two different ways to conceptualize and study resilience in cancer survivorship, as a trait and as a process. We focus specifically on the transition from active treatment to post-treatment survivorship. We present data from 225 cancer patients transitioning from active treatment (baseline assessment) to early survivorship (6-month follow-up). Results demonstrate that resilience assessed as a trait at baseline was unrelated to changes in survivors' mental or physical wellbeing at follow-up, but did predict a decline in social satisfaction and spiritual wellbeing over time. However, when resilience is conceptualized as a dynamic process, the sample showed substantial resilience on multiple aspects of wellbeing. We suggest that different ways of conceptualizing resilience--as a trait versus as a dynamic process--may lead to very different conclusions and discuss future research directions for cancer survivors and for science of resilience.
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PURPOSE: A substantial portion of breast cancer survivors are active in the workforce, yet factors that allow survivors to balance work with cancer management and to return to work are poorly understood. We examined breast cancer survivors' most valued/desired types of support in early survivorship. METHODS: Seventy-six employed breast cancer survivors answered an open-ended survey question assessing the most valued/desired support to receive from healthcare providers during early survivorship to manage work and health. Cutrona's (Journal of Social and Clinical Psychology 9:3-14, 1990) optimal matching theory and House's (1981) conceptualization of social support types informed our analyses. Data were content-analyzed to identify themes related to support, whether needed support was received or not, and the types of healthcare providers who provided support. RESULTS: We identified six themes related to types of support. Informational support was valued and mostly received by survivors, but they expected more guidance related to work. Emotional support was valued but lacking, attributed mainly to providers' lack of personal connection and mental health support. Instrumental (practical) support was valued but received by a small number of participants. Quality of life support to promote well-being and functionality was valued and often received. Other themes included non-specific support and non-support. CONCLUSIONS: This study expands our understanding of how breast cancer survivors perceive work-related support from healthcare professionals. Findings will inform targeted interventions designed to improve the support provided by healthcare professionals. IMPLICATIONS FOR CANCER SURVIVORS: Breast cancer survivors managing work and health challenges may benefit by having their unmet support needs fulfilled.
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Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/terapia , Feminino , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Apoio Social , SobreviventesRESUMO
In this paper we examine alternative measurement models for fitting data from health surveys. We show why a testlet-based latent trait model that includes covariate information, embedded within a fully Bayesian framework, can allow multiple simultaneous inferences and aid interpretation. We illustrate our approach with a survey of breast cancer survivors that reveals how the attitudes of those patients change after diagnosis toward a focus on appreciating the here-and-now, and away from consideration of longer-term goals. Using the covariate information, we also show the extent to which individual-level variables such as race, age and Tamoxifen treatment are related to a patient's change in attitude.The major contribution of this research is to demonstrate the use of a hierarchical Bayesian IRT model with covariates in this application area; hence a novel case study, and one that is certainly closely aligned with but distinct from the educational testing applications that have made IRT the dominant test scoring model.