Rebecca Block - Academia.edu (original) (raw)

Papers by Rebecca Block

Research paper thumbnail of Psychosocial barriers and facilitators to clinical trial enrollment and adherence for adolescents with cancer

Pediatrics, 2014

Adolescents (aged 15-19 years) have not experienced the same survival gains as children and older... more Adolescents (aged 15-19 years) have not experienced the same survival gains as children and older adults diagnosed with cancer. Poor clinical trial enrollment and adherence rates among adolescents may account for some of this disparity. Although biological, regulatory, systemic, and practice-related challenges to clinical trial enrollment and adherence have been examined, studies of psychosocial factors, which can serve as barriers or facilitators to enrollment and adherence, are limited. To bring attention to these psychological factors, we reviewed existing literature on psychosocial barriers and facilitators that can affect an adolescent's decision to enroll and adhere to a clinical trial. We also provide potential strategies to address psychosocial factors affecting clinical trial accrual and adherence.

Research paper thumbnail of Creating an adolescent and young adult cancer program: lessons learned from pediatric and adult oncology practice bases

Journal of the National Comprehensive Cancer Network : JNCCN, 2014

Driven by reports of unmet clinical needs and lack of survival improvement, programs for adolesce... more Driven by reports of unmet clinical needs and lack of survival improvement, programs for adolescents and young adults (AYAs) with cancer have become increasingly common across the United States during the past 10 years. Programs generally originate from existing pediatric or adult hospitals, serve all or a subset of patients between 15 and 39 years of age at the time of cancer diagnosis, and aim to work collaboratively with other branches of their institution to deliver superior care for AYAs. Until recently, programs responded to local needs and evolved without an established framework for growth. Over the past several years, organizations including NCCN have published guidelines for AYA cancer care and for the development of clinical AYA programs. This article reviews these publications, describes the growth and development of 2 nationally recognized AYA centers--Seattle Children's Hospital and Moffitt Cancer Center--and offers practical suggestions to assist developing AYA pr...

Research paper thumbnail of The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients

Psycho-Oncology, 2014

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate g... more Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. 165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.

Research paper thumbnail of Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis

Psycho-Oncology, 2014

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psyc... more BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Research paper thumbnail of Trajectories of Psychological Distress in Adolescent and Young Adult Patients With Cancer: A 1-Year Longitudinal Study

Journal of Clinical Oncology, 2013

To examine prevalence and changes in symptoms of psychological distress over 1 year after initial... more To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Sociodemographic and clinical predictors of changes in distress were examined. In this multisite, longitudinal, prospective study of an ethnically diverse sample, 215 patients age 14 to 39 years were assessed for psychological distress within the first 4 months of diagnosis and again 6 and 12 months later. Linear mixed models with random intercept and slope estimated changes in distress, as measured by the Brief Symptom Inventory-18 (BSI-18). Within the first 4 months of diagnosis, 60 respondents (28%) had BSI-18 scores suggesting caseness for distress. On average, distress symptoms exceeded population norms at the time of diagnosis, dipped at the 6-month follow-up, but increased to a level exceeding population norms at the 12-month follow-up. A statistically significant decline in distress over 1 year was observed; however, the gradient of change was not clinically significant. Multivariate analyses revealed that the reduction in distress over time was primarily a function of being off treatment and involved in school or work. Notably, cancer type or severity was not associated with distress. Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.

Research paper thumbnail of Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Cancer, 2013

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psyc... more BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Research paper thumbnail of If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records

Journal of oncology practice / American Society of Clinical Oncology, Jan 30, 2014

The adolescent and young adult (AYA) population is underserved because of unique late-effect issu... more The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% docume...

Research paper thumbnail of Psychosocial barriers and facilitators to clinical trial enrollment and adherence for adolescents with cancer

Pediatrics, 2014

Adolescents (aged 15-19 years) have not experienced the same survival gains as children and older... more Adolescents (aged 15-19 years) have not experienced the same survival gains as children and older adults diagnosed with cancer. Poor clinical trial enrollment and adherence rates among adolescents may account for some of this disparity. Although biological, regulatory, systemic, and practice-related challenges to clinical trial enrollment and adherence have been examined, studies of psychosocial factors, which can serve as barriers or facilitators to enrollment and adherence, are limited. To bring attention to these psychological factors, we reviewed existing literature on psychosocial barriers and facilitators that can affect an adolescent's decision to enroll and adhere to a clinical trial. We also provide potential strategies to address psychosocial factors affecting clinical trial accrual and adherence.

Research paper thumbnail of Creating an adolescent and young adult cancer program: lessons learned from pediatric and adult oncology practice bases

Journal of the National Comprehensive Cancer Network : JNCCN, 2014

Driven by reports of unmet clinical needs and lack of survival improvement, programs for adolesce... more Driven by reports of unmet clinical needs and lack of survival improvement, programs for adolescents and young adults (AYAs) with cancer have become increasingly common across the United States during the past 10 years. Programs generally originate from existing pediatric or adult hospitals, serve all or a subset of patients between 15 and 39 years of age at the time of cancer diagnosis, and aim to work collaboratively with other branches of their institution to deliver superior care for AYAs. Until recently, programs responded to local needs and evolved without an established framework for growth. Over the past several years, organizations including NCCN have published guidelines for AYA cancer care and for the development of clinical AYA programs. This article reviews these publications, describes the growth and development of 2 nationally recognized AYA centers--Seattle Children's Hospital and Moffitt Cancer Center--and offers practical suggestions to assist developing AYA pr...

Research paper thumbnail of The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients

Psycho-Oncology, 2014

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate g... more Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. 165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.

Research paper thumbnail of Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis

Psycho-Oncology, 2014

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psyc... more BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Research paper thumbnail of Trajectories of Psychological Distress in Adolescent and Young Adult Patients With Cancer: A 1-Year Longitudinal Study

Journal of Clinical Oncology, 2013

To examine prevalence and changes in symptoms of psychological distress over 1 year after initial... more To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Sociodemographic and clinical predictors of changes in distress were examined. In this multisite, longitudinal, prospective study of an ethnically diverse sample, 215 patients age 14 to 39 years were assessed for psychological distress within the first 4 months of diagnosis and again 6 and 12 months later. Linear mixed models with random intercept and slope estimated changes in distress, as measured by the Brief Symptom Inventory-18 (BSI-18). Within the first 4 months of diagnosis, 60 respondents (28%) had BSI-18 scores suggesting caseness for distress. On average, distress symptoms exceeded population norms at the time of diagnosis, dipped at the 6-month follow-up, but increased to a level exceeding population norms at the 12-month follow-up. A statistically significant decline in distress over 1 year was observed; however, the gradient of change was not clinically significant. Multivariate analyses revealed that the reduction in distress over time was primarily a function of being off treatment and involved in school or work. Notably, cancer type or severity was not associated with distress. Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.

Research paper thumbnail of Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Cancer, 2013

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psyc... more BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Research paper thumbnail of If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records

Journal of oncology practice / American Society of Clinical Oncology, Jan 30, 2014

The adolescent and young adult (AYA) population is underserved because of unique late-effect issu... more The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% docume...