Long-Term Adaptation Among Adolescent and Young Adult Children to Familial Cancer Risk.

BACKGROUND: It is important to examine adolescent and young adult (AYA) children's long-term psychosocial and behavioral adaptation to disclosure of maternal BRCA-positive carrier status (BRCA+) to inform approaches for familial cancer risk communication, education, and counseling. METHODS: Mothers underwent BRCA genetic testing 1 to 5 years earlier. Group differences in AYAs' self-reported outcomes were analyzed by maternal health and carrier status, and child age and sex. RESULTS: A total of N = 272 AYAs were enrolled: 76.1% of their mothers were breast or ovarian cancer survivors and 17.3% were BRCA+. AYAs' cancer risk behavior (tobacco and alcohol use, physical activity) and psychologic distress levels did not vary by maternal status. In bivariate analyses, AYAs of cancer-surviving mothers believed themselves to be at greater risk for, and were more knowledgeable about, cancer than AYAs of mothers without cancer. AYAs of BRCA+ mothers were more concerned about cancer, held stronger beliefs about genetic risk, and placed a higher value on learning about genetics. In adjusted models, maternal cancer history (not BRCA+) remained associated with AYAs' greater perceptions of cancer risk (P = .002), and knowledge about cancer (P = .03) and its causes (P = .002). CONCLUSIONS: Disclosing maternal BRCA+ status did not influence children's lifestyle behavior or adversely affect quality of life long term. AYAs of BRCA+ mothers were more aware of and interested in genetic risk information. Such families may benefit from support to promote open communication about genetic testing choices.

Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening.

BACKGROUND: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity. PURPOSES: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening. METHODS: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. RESULTS: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs. CONCLUSIONS: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. TRIAL REGISTRATION: NCT04446728 23 June 2020.

Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

Consensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members' ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrative examples of ongoing BRCA1/2-related clinical trials that apply a peer support model to improve family communication and functioning. Peer support can augment currently available genetic services to facilitate adjustment to and effective use of cancer genetic risk information. Importantly, this scalable approach can address the presence of cancer risk within families across multiple developmental stages. This applies a family-centered perspective that accommodates all potentially at-risk relatives. This peer support model can be further applied to emerging topics in clinical genetics to expand reach and impact.

Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.

Communicating risk and other health information in a clear, understandable, and actionable manner is critical for the prevention and control of cancer, as well as the care of affected individuals and their family members. However, the swift pace of development in communication technologies has dramatically changed the health communication landscape. This digital era presents new opportunities and challenges for cancer communication research and its impact on practice and policy. In this article, we examine the science of health communication focused on cancer and highlight important areas of research for the coming decade. Specifically, we discuss three domains in which cancer communication may occur: (a) among patients and their healthcare providers; (b) within and among families and social networks; and (c) across communities, populations, and the public more broadly. We underscore findings from the prior decade of cancer communication research, provide illustrative examples of future directions for cancer communication science, and conclude with considerations for diverse populations. Health informatics studies will be necessary to fully understand the growing and complex communication settings related to cancer: such works have the potential to change the face of information exchanges about cancer and elevate our collective discourse about this area as newer clinical and public health priorities emerge. Researchers from a wide array of specialties are interested in examining and improving cancer communication. These interdisciplinary perspectives can rapidly advance and help translate findings of cancer communication in the field of behavioral medicine.

Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer.

BACKGROUND: Children with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial. METHODS: Semi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data. RESULTS: Stakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care. CONCLUSIONS: Stakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community. TRIAL REGISTRATION: NCT04446728 June 23, 2020.

Prevalence and predictors of cancer-related worry and associations with health behaviors in adult survivors of childhood cancer.

BACKGROUND: Cancer-related worry (CRW) is common among cancer survivors; however, little is known about factors associated with CRW or its impact on health behaviors in adult survivors of childhood cancer. METHODS: Survivors in the St. Jude Lifetime Cohort Study (n = 3211; 51% male; mean age, 31.2 years [SD, 8.4 years]; mean time after diagnosis, 22.8 years [SD, 8.3 years]) underwent medical evaluations and completed ratings of CRW, psychological symptoms, and health behaviors. Multivariable modified Poisson regression models examined associations between CRW and treatment exposures, chronic health conditions, psychological symptoms, and health behaviors. RESULTS: Sixty-four percent of survivors (95% confidence interval [CI], 62.6-65.9) reported worry about subsequent malignancy, 45% (95% CI, 43.5-46.9) reported worry about physical problems related to cancer, and 33% (95% CI, 31.2-34.4) reported worry about relapse. Multiple psychological symptoms, treatment exposures, and chronic conditions significantly increased the risk of CRW. Survivors reporting CRW were at increased risk for substance use, inadequate physical activity, and increased health care utilization after adjustments for chronic conditions. For example, with adjustments for chronic conditions, those who endorsed CRW were more likely to have ≥5 cancer-related physician visits, ≥5 physician visits related to cancer, and ≥5 calls to a physician's office in the previous 2 years in comparison with survivors who were not worried. CRW was also associated with an increased risk of current tobacco use, past marijuana use, and current marijuana use. CONCLUSIONS: A substantial proportion of adult survivors of childhood cancer reported CRW associated with increased health care utilization. CRW may serve as an intervention target to promote well-being and adaptive health behaviors.

COVID-19 Exposure and Family Impact Scales: Factor Structure and Initial Psychometrics.

OBJECTIVE: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure. METHODS: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha). RESULTS: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress). DISCUSSION: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic.

Associations Among Perceived Parent and Peer Support, Self-Esteem, and Cancer-Related Worry in Adolescent and Young Adult Cancer Survivors.

Purpose: Cancer-related worry is common among adolescent and young adult (AYA) cancer survivors, and is associated with adverse psychosocial outcomes. Thus, it is crucial to identify possible modifiable covariates of cancer-related worry to aid in developing targeted interventions. This study aimed to explore the cross-sectional associations between cancer-related worry and potential covariates (i.e., perceived parental support, perceived peer support, self-esteem). Methods: One hundred fifty-two survivors between the ages of 15 and 25 who had been diagnosed with cancer between the ages of 14 and 21 completed the Inventory of Parent and Peer Attachment, the Rosenberg Self-Esteem Scale, the Self-Perception Profile for Adolescents, and a measure of cancer-related worry. Relationships among variables were assessed through structural equation modeling. Results: The model showed good fit [χ2(13) = 13.26, p = 0.43; comparative fit index = 0.997; root mean square error of approximation = 0.01 (90% confidence interval = 0.00-0.08); standardized root mean square residual = 0.04]; however, not all associations were in expected directions. Higher perceived parent and peer support were each significantly associated with lower self-esteem, which, in turn, was significantly associated with higher cancer-related worry. There was no direct association between support variables and cancer-related worry. Conclusion: These findings, which contradict existing theory about self-esteem development in healthy AYAs and prior research about the association between support and self-esteem in children and adolescents with cancer, suggest complex, and likely reciprocal, relationships among perceived support, cancer-related worry, and self-esteem in AYA cancer survivors. Support interventions involving peers with cancer and cognitive behavioral interventions targeting parent and peer relationships, self-esteem, and cancer-related worry may be beneficial in fostering AYA cancer survivors' psychosocial development.

A qualitative study of adolescent and young adult cancer survivors' perceptions of family and peer support.

This qualitative study examined adolescent and young adult survivors' perceptions of support from family and peers. A total of 26 survivors, aged 16-24 years, who had been diagnosed with cancer between the ages of 14 and 18, participated in semi-structured interviews. Three themes emerged for support: practical support, emotional support, and new sense of closeness. For lack of support, two themes emerged: absence during treatment and lack of understanding about appearance changes. These findings emphasize the perceived importance of family and peer support throughout adolescent and young adults' cancer trajectories and indicate a need for interventions to help adolescent and young adult develop and maintain support networks throughout treatment and survivorship.

The relationship between cancer-related worry and posttraumatic growth in adolescent and young adult cancer survivors.

OBJECTIVES: To examine cancer-related worry in adolescent and young adult (AYA) cancer survivors and its relationship with posttraumatic growth over time, as the relationship between these constructs has not been assessed longitudinally in this population. METHODS: A total of 153 AYA cancer survivors completed measures of cancer-related worry and posttraumatic growth 3 times across approximately 1 year. Descriptive statistics were calculated for cancer-related worry items, and mixed-effects modeling assessed the relationship between cancer-related worry and posttraumatic growth. RESULTS: Most participants reported at least moderate cancer-related worry in at least 1 area at each assessment (88.2-93.9% across time points). Worry about future health was the most prevalent concern (65.4%-83.7% across time points). Cancer-related worry was positively related to posttraumatic growth in the mixed-effects model. However, post hoc analyses indicated that cancer-related worry and posttraumatic growth were modestly related; there was no evidence that either construct predicted the other over time. CONCLUSIONS: Cancer-related worry appears to be a common psychosocial outcome in AYA cancer survivors. However, cancer-related worry appears to be only modestly related to the development of posttraumatic growth, implying that these may be independent constructs despite theoretical literature suggesting that posttraumatic growth may stem from posttraumatic distress. Thus, it is necessary to assess AYA survivors for cancer-related worry and posttraumatic growth, and develop interventions to target cancer-related worry and foster posttraumatic growth.

Cancer Victim Identity for Individuals with Histories of Cancer and Childhood Sexual Abuse.

Identifying as a 'cancer victim' has been linked to adverse psychosocial sequelae in individuals who have been diagnosed with cancer. Being a childhood sexual abuse (CSA) survivor may predispose individuals towards a "victim" identity in general. The aim of this study was to determine the prevalence of identifying as a 'cancer victim' among CSA survivors who were diagnosed with cancer as adults, and to explore psychological factors associated with identification as a cancer victim. 105 adults reporting both a history of CSA and of having been diagnosed with cancer as an adult were recruited through Amazon Mechanical Turk. Variables assessed included CSA severity, abuse-related powerlessness, general mastery, and cancer victim identity. Fifty-one percent of the sample endorsed a cancer victim identity. Path analysis revealed that abuse-related powerlessness was related to decreased feelings of general mastery, which was in turn associated with cancer victim identification (x2 = .12, DF = 1, p < .73; RMSEA = .00; SRMR = .01: Bentler CFI = 1.0). From a clinical perspective, the results suggest that increasing general mastery in CSA survivors in the cancer setting may be an important mechanism for attenuating the risk for developing a cancer victim identity and, presumably, for downstream adverse psychosocial sequelae.

Anxiety Among Adolescent Survivors of Pediatric Cancer.

PURPOSE: The purpose of this review was to synthesize current knowledge about anxiety among adolescent survivors of pediatric cancer and highlights areas for future research. METHODS: Systematic literature searches were conducted in five databases for articles published anytime before December 28, 2015. Manuscripts were reviewed by a team of six coders. Included manuscripts reported outcomes relevant to anxiety, worry, and post-traumatic stress in survivors of pediatric cancer (age at the time of study: 10-22 years) who were off treatment. RESULTS: Twenty-four articles met inclusion criteria. Included results were categorized into the following domains: post-traumatic stress, anxiety, cancer-related worry, and interventions. With the exception of post-traumatic stress, there was little research about anxiety in this population; however, studies generally indicated that adolescent survivors of pediatric cancer are at elevated risk for anxiety, post-traumatic stress symptoms, and cancer-related worry. CONCLUSIONS: This review provides preliminary evidence that anxiety is a relevant, but understudied, psychosocial outcome for adolescent survivors of pediatric cancer. More research is needed to better understand the presentation of anxiety in this population, its effect on survivors' quality of life, and possible areas for intervention.

Perceived Family Functioning Predicts Baseline Psychosocial Characteristics in U.S. Participants of a Family Focused Grief Therapy Trial.

CONTEXT AND OBJECTIVES: Screening and baseline data on 170 American families (620 individuals), selected by screening from a palliative care population for inclusion in a randomized controlled trial of family-focused grief therapy, were examined to determine whether family dysfunction conferred higher levels of psychosocial morbidity. We hypothesized that greater family dysfunction would, indeed, be associated with poorer psychosocial outcomes among palliative care patients and their family members. METHODS: Screened families were classified according to their functioning on the Family Relationships Index (FRI) and consented families completed baseline assessments. Mixed-effects modeling with post hoc tests compared individuals' baseline psychosocial outcomes (psychological distress, social functioning, and family functioning on a different measure) according to the classification of their family on the FRI. Covariates were included in all models as appropriate. RESULTS: For those who completed baseline measures, 191 (30.0%) individuals were in low-communicating families, 313 (50.5%) in uninvolved families, and 116 (18.7%) in conflictual families. Family class was significantly associated (at ps ≤ 0.05) with increased psychological distress (Beck Depression Inventory and Brief Symptom Inventory) and poorer social adjustment (Social Adjustment Scale) for individual family members. The family assessment device supported the concurrent accuracy of the FRI. CONCLUSION: As predicted, significantly greater levels of individual psychosocial morbidity were present in American families whose functioning as a group was poorer. Support was generated for a clinical approach that screens families to identify those at high risk. Overall, these baseline data point to the importance of a family-centered model of care.

Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review.

PURPOSE: A cancer diagnosis during adolescence or young adulthood (AYA; defined as ages 15-39) generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted. Past research highlights that AYAs' experiences and psychosocial outcomes are different, and more research and attention is needed. We aimed to identify and synthesize literature regarding psychosocial outcomes, unique needs, and existing psychosocial interventions pertaining to individuals diagnosed with cancer exclusively during AYA, and to highlight areas for future research. METHODS: A systematic literature search was conducted using MEDLINE (via PubMed), EMBASE, Cochrane, Web of Science, and PsycINFO (via OVID). Grey literature was searched using key term variations and combinations. Overall, 15,301 records were assessed by two independent reviewers, with 38 studies meeting inclusion criteria. RESULTS: Data synthesis of the 38 articles was organized by four main themes based on quality of life and survivorship: physical well-being (7 studies), psychological well-being (8 studies), social well-being (9 studies), and survivorship care (14 studies). The paucity of studies for such broad inclusion criteria highlights that this population is often combined or subsumed under other age groups, missing needs unique to these AYAs. CONCLUSIONS: AYA cancer survivors' experiences are nuanced, with interacting variables contributing to post-treatment outcomes. AYAs require age-appropriate and flexible care, informational needs and treatment-related education that foster autonomy for long-term survivorship, as well as improved follow-up care and psychological outcomes. IMPLICATIONS FOR CANCER SURVIVORS: By incorporating these findings into practice, the informational and unmet needs of AYAs can be addressed effectively. Education and programming is lacking specific and general subject matter specific to AYAs, incorporating ranging needs at different treatment stages.

A systematic review of ovarian cancer and fear of recurrence.

OBJECTIVE: To assess demographic, medical, and psychological factors that are associated with fear of recurrence (FCR) in ovarian cancer patients. METHOD: We searched PubMed, EMBASE, Cochrane, CINAHL, and PsycINFO. For PubMed, a search using Medical Subject Headings (MeSH) was run, as well as a text-word search from 1990 to July of 2014. The search terms used consisted of ovarian terms, fear terms, and recurrence/progression themes. Title and abstract reviews were conducted by two independent reviewers to determine eligibility, and discrepancies were decided by a third reviewer. Full-text reviews of potentially eligible articles were conducted by the review team, which met regularly to ensure the reliability of eligibility ratings across all articles. RESULTS: A total of 15 articles met our inclusion criteria. Nine were quantitative studies that utilized a cross-sectional design, and the other six included three qualitative studies, two small intervention studies, and one study that utilized content analysis to explore written correspondence among ovarian cancer patients. FCR was reported as a significant concern for both older and younger women at both early and advanced stages. Women were distressed about recurrence at various times during their treatment and posttreatment. FCR was noted to be prevalent around cancer follow-up examinations. Many women reported not receiving adequate support for recurrence. FCR was also shown to be linked in some way to hopelessness, faith/spirituality, and posttraumatic stress disorder (PTSD). FCR was also linked to patients' anxiety about death and dying and uncertainty about the future of their medical health. SIGNIFICANCE OF RESULTS: This review demonstrates that FCR is prevalent in the ovarian cancer population. Moreover, cancer recurrence fears are not adequately assessed or treated. More information is needed on the factors that may be related to women's fears about recurrence of ovarian cancer. In addition, a validated measure of FCR among ovarian cancer patients as well as a treatment intervention are needed.

Anxiety among adolescent survivors of pediatric cancer: A missing link in the survivorship literature.

OBJECTIVE: With growing numbers of pediatric cancer survivors, it is becoming increasingly important to investigate the psychosocial sequelae of surviving cancer diagnosed during childhood or adolescence. It is particularly important to study the psychosocial needs of adolescent survivors of pediatric cancer because adolescence is a critical time during psychosocial development. Although there is existent literature about the general psychosocial adjustment of this population, the literature regarding anxiety is scant. This brief review aimed to assesses currently available literature that addresses anxiety in adolescent cancer survivors. METHOD: Articles assessing psychosocial adjustment in adolescent survivors of pediatric cancer were reviewed for information regarding anxiety symptoms. RESULTS: To the authors' knowledge, there is no literature that focuses specifically on anxiety in this population. However, many articles reported results that indicated the possibility of increased anxiety in this group. SIGNIFICANCE OF RESULTS: It is critical to further investigate anxiety in this group and develop appropriate interventions if necessary. Doing so will aid the process of enhancing psychosocial care for adolescent cancer survivors.