1.
Social well‐being among adolescents and young adults with cancer: A systematic review
Warner, Echo L.; Kent, Erin E.; Trevino, Kelly M. ...
Cancer,
April 1, 2016, Volume:
122, Issue:
7
Journal Article
BACKGROUND
A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young ...
adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research.
METHODS
A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well‐being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well‐being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain.
RESULTS
AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes.
CONCLUSIONS
Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks. Cancer 2016;122:1029–1037. © 2016 American Cancer Society
A cancer diagnosis during adolescence and young adulthood can lead to considerable problems with regard to social well‐being. The current study systematically reviews the literature concerning the social well‐being of adolescents and young adults with cancer and finds consistent difficulties related to employment/educational attainment, financial stability, social relationships, and supportive care.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
2.
Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?
Husson, Olga; Zebrack, Bradley J.; Aguilar, Christine ...
Cancer,
July 15, 2017, Volume:
123, Issue:
14
Journal Article
BACKGROUND
The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores ...
with population norms and identify trajectories of social functioning over time and its correlates.
METHODS
A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self‐report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later.
RESULTS
AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12‐month follow‐up (73.1 vs 85.1; P<.001), and at the 24‐month follow‐up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12‐month follow‐up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow‐up, reported more physical symptoms and higher levels of distress at baseline and follow‐up, and perceived less social support at baseline compared with the other 3 groups.
CONCLUSIONS
Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one‐third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743‐51. © 2017 American Cancer Society.
Nearly one‐third of adolescent and young adult patients with cancer remain at risk of poor social functioning 24 months after their primary diagnosis. Reducing physical symptoms and psychological distress and enhancing social support by intervention during the period after treatment may potentially help these young survivors to better reintegrate into society.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
3.
4.
Post-traumatic stress symptoms, post-traumatic stress disorder, and post-traumatic growth among cancer survivors: a systematic scoping review of interventions
Capaldi, Jessica M.; Shabanian, Julia; Finster, Laurel B. ...
Health psychology review
18, Issue:
1
Journal Article
The detrimental effects of Post-Traumatic Stress Symptoms (PTSS) and Post-Traumatic Stress Disorder (PTSD) and the benefits of Post-Traumatic Growth (PTG) are well established for cancer survivors. ...
Increased cancer survival rates necessitate an understanding of how these two paradoxical outcomes, PTSS/PTSD and PTG, are targeted through interventions. This systematic scoping review aims to (a) examine existing evidence on interventions targeting PTSS/PTSD and/or PTG among cancer survivors and (b) identify knowledge gaps to inform future research. Following the six steps of a scoping review, 76 articles met the inclusion criteria. Quantitative articles were examined using descriptive analysis. Frequency counts of the collated data were tabulated into summary tables. Qualitative articles were reviewed using meta-synthesis. Most articles were quantitative (n = 52) and targeted PTG (n = 68) through promising intervention approaches such as psychotherapy, mindfulness, physical activity, and psilocybin-assisted therapy. Three key implications for future research and practice were synthesized: (1) mechanistic considerations for intervention design that provide a roadmap for rigorous and theoretically-grounded research; (2) the need for improved representation of cancer survivors in trials; and (3) potential facilitators of intervention efficacy. Together, these findings can direct future research to optimize interventions to reduce PTSS/PTSD and promote PTG achievement among cancer survivors.
more
Available for:
BFBNIB, NUK, PILJ, SAZU, UL, UM, UPUK
5.
Using Patient-Reported Outcomes in Clinical Practice: Challenges and Opportunities
Lohr, Kathleen N.; Zebrack, Bradley J.
Quality of life research,
02/2009, Volume:
18, Issue:
1
Journal Article
Purpose Introduce and explore issues at an international conference about the use of patient-reported outcomes (PROs) in clinical practice. Methods Review of salient literature, clinical and personal ...
experiences, conference presentations and discussions, and post-conference comments from outside experts. Results PROs (information from patients about a health condition and its management) have been assessed through self-reports for at least four decades. Traditional applications are in clinical and health services research. Uses in clinical practice, although increasing, are less common and more challenging. PROs can enhance the understanding of patients' experiences and responses to therapy and inform clinical practice. Conclusions We pose and discuss four main questions: (1) Will clinicians accept PRO measures? (2) Will clinicians use PRO measures? (3) Will measuring PROs actually improve those outcomes? (4) Will PROs be perceived as having other, less salutary purposes? A patientcentered perspective on PRO measurement presents issues about the extent to which PROs can accurately capture patient experiences and assess psychosocial and environmental factors that influence communication with clinicians and eventual outcomes. We end with comments about the intersection of PROs and bioethics, noting contributions that PROs may make to beneficence, patient autonomy, and distributive justice.
more
Available for:
BFBNIB, CEKLJ, DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, INZLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NMLJ, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ, ZRSKP
6.
Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future
Smith, Ashley Wilder; Seibel, Nita L.; Lewis, Denise R. ...
Cancer,
April 1, 2016, Volume:
122, Issue:
7
Journal Article
Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group ...
(PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled “Next Steps in Adolescent and Young Adult Oncology” on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer. Cancer 2016;122:988–999. © 2016 American Cancer Society
This report provides an overview of the National Cancer Institute and LIVESTRONG Foundation workshop on adolescent and young adult cancer research. Current science, including epidemiology, basic biology, clinical trials, health services, and health‐related quality‐of‐life research, is reviewed with recommendations for future research priorities.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
7.
Adoption and cancer survivors: Findings from a learning activity for oncology nurses
Quinn, Gwendolyn P.; Zebrack, Bradley J.; Sehovic, Ivana ...
Cancer,
September 1, 2015, Volume:
121, Issue:
17
Journal Article
BACKGROUND
To the authors' knowledge, little is known regarding the rate at which cancer survivors successfully adopt a child or about their experiences negotiating a costly, and perhaps ...
discriminatory, process regarding the prospective parent's health history. The current study describes the results of a learning activity in which nurses contacted an adoption agency to learn more about the process for survivors with the goal of helping nurses provide patients with accurate information for making a well‐informed decision regarding adoption.
METHODS
Training program participants identified an adoption agency (local, state, or international) and conducted an interview using a semistructured guide. After the interview, participants created a summary of responses to the questions. The authors examined responses to each question using qualitative content analysis.
RESULTS
A total of 77 participants (98% completion rate) across 15 states provided a summary. Responses were distributed across the following categories: adoption costs, steps required for survivors seeking adoption, challenges for survivors seeking adoption, birth parents' reservations, and planned institutional changes to increase adoption awareness. The majority of respondents reported improving their knowledge of adoption and cancer, increased challenges for survivors, and the need to educate patients concerning the realities of adoption policies. The need for a letter stating the survivor was 5 years cancer free was identified as a significant obstacle for survivors.
CONCLUSIONS
Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a health care provider who can provide education and concrete information when patients are making a decision about fertility and adoption. Cancer 2015;121:2993–3000. © 2015 American Cancer Society.
Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a health care provider who can provide education and concrete information when patients are making a decision regarding fertility and adoption.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
8.
Available for:
NUK, UL, UM, UPUK
9.
Optimizing the measurement of health‐related quality of life in adolescents and young adults with cancer
Salsman, John M.; Danhauer, Suzanne C.; Moore, Justin B. ...
Cancer,
November 15, 2020, Volume:
126, Issue:
22
Journal Article
To date, the health‐related quality of life experiences of adolescents and young adults (AYA) with cancer have been inconsistently and incompletely captured by existing patient‐reported outcome (PRO) ...
measures. The National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS) represents the state of the art for measurement science of PROs and provides an optimal approach for addressing these measurement challenges and catalyzing future patient‐centered research in AYA oncology.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
10.
Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult
Bellizzi, Keith M.; Smith, Ashley; Schmidt, Steven ...
Cancer,
15 October 2012, Volume:
118, Issue:
20
Journal Article
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. Cancer 2012. © 2012 American Cancer Society.
Findings draw attention to specific psychosocial areas that may necessitate needed support and services to help adolescents and young adults with cancer minimize the negative consequences of cancer while promoting or supporting positive aspects during an already profound time of developmental change and turmoil.
more
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
PDF
