Rebecca H. Johnson

Breast Cancer Before Age 40 Years

Approximately 7% of women with breast cancer are diagnosed before the age of 40 years, and this disease accounts for more than 40% of all cancer in women in this age group. Survival rates are worse when compared to those in older women, and multivariate analysis has shown younger age to be an independent predictor of adverse outcome. Inherited syndromes, specifically BRCA1 and BRCA2, must be considered when developing treatment algorithms for younger women. Chemotherapy, endocrine, and local therapies have the potential to significantly impact both the physiologic health-including future fertility, premature menopause, and bone health-and the psychological health of young women as they face a diagnosis of breast cancer.

Incidence of Breast Cancer With Distant Involvement Among Women in the United States, 1976 to 2009

IMPORTANCEnEvidence from the US National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggests that the incidence of advanced breast cancer in young women is increasing.nnnOBJECTIVEnTo quantify this trend and analyze it as a function of stage at diagnosis, race/ethnicity, residence, and hormone receptor status.nnnDESIGN, SETTING, AND PATIENTSnBreast cancer incidence, incidence trends, and survival rates as a function of age and extent of disease at diagnosis were obtained from 3 SEER registries that provide data spanning 1973-2009, 1992-2009, and 2000-2009. SEER defines localized as disease confined to the breast, regional to contiguous and adjacent organ spread (eg, lymph nodes, chest wall), and distant disease to remote metastases (bone, brain, lung, etc).nnnMAIN OUTCOME MEASUREnBreast cancer incidence trends in the United States.nnnRESULTSnIn the United States, the incidence of breast cancer with distant involvement at diagnosis increased in 25- to 39-year-old women from 1.53 (95% CI, 1.01 to 2.21) per 100,000 in 1976 to 2.90 (95% CI, 2.31 to 3.59) per 100,000 in 2009. This is an absolute difference of 1.37 per 100,000, representing an average compounded increase of 2.07% per year (95% CI, 1.57% to 2.58%; P < .001) over the 34-year interval. No other age group or extent-of-disease subgroup of the same age range had a similar increase. For 25- to 39-year-olds, there was an increased incidence in distant disease among all races and ethnicities evaluated, especially non-Hispanic white and African American, and this occurred in both metropolitan and nonmetropolitan areas. Incidence for women with estrogen receptor-positive subtypes increased more than for women with estrogen receptor-negative subtypes.nnnCONCLUSION AND RELEVANCEnBased on SEER data, there was a small but statistically significant increase in the incidence of breast cancer with distant involvement in the United States between 1976 and 2009 for women aged 25 to 39 years, without a corresponding increase in older women.

Creating a standardized process to offer the standard of care: continuous process improvement methodology is associated with increased rates of sperm cryopreservation among adolescent and young adult males with cancer.

Background: There is limited literature on strategies to overcome the barriers to sperm banking among adolescent and young adult (AYA) males with cancer. By standardizing our process for offering sperm banking to AYA males before cancer treatment, we aimed to improve rates of sperm banking at our institution. Materials and Methods: Continuous process improvement is a technique that has recently been applied to improve health care delivery. We used continuous process improvement methodologies to create a standard process for fertility preservation for AYA males with cancer at our institution. We compared rates of sperm banking before and after standardization. Results: In the 12-month period after implementation of a standardized process, 90% of patients were offered sperm banking. We demonstrated an 8-fold increase in the proportion of AYA males’ sperm banking, and a 5-fold increase in the rate of sperm banking at our institution. Discussion: Implementation of a standardized process for sperm banking for AYA males with cancer was associated with increased rates of sperm banking at our institution. This study supports the role of standardized health care in decreasing barriers to sperm banking.

Improving enrollment in clinical trials for adolescents with cancer

Overall cancer cure rates have risen over the last 30 years. Adolescent and young adult (AYA) oncology patients aged 15 to 39 have not shared in these successes as an age group, including those who fall into the younger age group of 15 to 19 years. The reasons for this deficit in survival improvement are manifold, but research has shown that an important factor is decreased enrollment in therapeutic clinical trials in this population versus younger patients. The paucity of adolescents treated in clinical trials is itself the result of several elements of the health care landscape in the United States. On the local level, these factors include referral patterns and facilities available; on the national level, related factors include the number of clinical trials available for this age group and health care provider education in the care of these patients. We examine the data available that have contributed to this deficit in the United States and offer broad strategies to address these shortcomings with the goal of improving outcomes in this underserved population.

Electronic self-report symptom and quality of life for adolescent patients with cancer: a feasibility study.

Background: Computerized symptom and quality of life (QoL) assessment has been tested and found feasible and acceptable in outpatient settings for adult patients with cancer, but has not been used often in pediatric oncology settings in the United States. Objective: The purpose of this pilot study was to evaluate the feasibility of an innovative, computerized symptom, and QoL assessment for adolescent patients who were being treated for cancer. Methods: A convenience sample of 40 adolescent patients with cancer, who were between 13 and 20 years old and able to communicate in English, agreed to participate. Each participant answered the Web-based Electronic Self-report Assessment-Cancer Adolescent Form on a wireless touch-screen computer just prior to a treatment visit in an ambulatory clinic setting. Descriptive frequencies and central tendency were used to describe sample characteristics and feasibility outcomes. Results: The computerized assessment was found to be feasible with regard to data completeness rates (>99%), acceptability (high), time to complete (30 minutes), and assistance required to complete (minimal). Conclusion: The Electronic Self-report Assessment-Cancer Adolescent Form is a feasible approach for obtaining adolescent patients self-report of cancer symptoms and QoL in an ambulatory setting. Implications for Practice: Screening for symptoms and QoL may be integrated during check-in procedures as routine assessment for adolescent cancer patients in ambulatory settings.

Understanding how adolescents and young adults with cancer talk about needs in online and face-to-face support groups:

We compared adolescent and young adult cancer patient and survivor language between mediated and face-to-face support communities in order to understand how the use of certain words frame conversations about family, friends, health, work, achievement, and leisure. We analyzed transcripts from an online discussion board (Nu2009=u2009360) and face-to-face support group (Nu2009=u2009569) for adolescent and young adults using Linguistic Inquiry and Word Count, a word-based computerized text analysis software that counts the frequency of words and word stems. There were significant differences between the online and face-to-face support groups in terms of content (e.g. friends, health) and style words (e.g. verb tense, negative emotion, and cognitive process).

Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community

PurposeFinding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses.MethodsUsing posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC).ResultsIndependent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs.ConclusionsThe findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience.Implications for Cancer SurvivorsThis research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.

The History and Accomplishments of the LIVESTRONG Young Adult Alliance

PURPOSEnThis article outlines the history, background, and accomplishments of the LIVESTRONG Young Adult Alliance.nnnBACKGROUNDnThe LIVESTRONG Young Adult Alliance, a program of the Lance Armstrong Foundation, was developed as a vehicle for a strategic plan designed to implement the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) recommendations. The AYAO PRG was co-sponsored by Lance Armstrong Foundation and the National Cancer Institute (NCI); both LIVESTRONG and NCI provide strategic oversight and guidance to the Alliance. Highlights and accomplishments: The Alliance accomplishments include the publication of disease-specific retrospective analyses, funding of an AYA cohort study and biorepository proposal, publication of two position statements on guidelines for care of AYAs with cancer and training for AYA oncology health professionals, promotion of an international charter of rights for AYA cancer patients, creation and distribution of a survey to college health professionals, creation and implementation of a Cancer Centers Working Group and Institutional Review Board Toolkit, and continued growth and collaboration through an annual meeting.nnnCONCLUSIONnThe growth and success of the Alliance has coincided with the growth of AYA oncology as a field. The collaborative environment of the Alliance draws together a diverse group of individuals united in the effort to increase survival rates and improve the quality of life for adolescents and young adults diagnosed with cancer.

Defining adolescent and young adult (AYA) exercise and nutrition needs: Concerns communicated in an online cancer support community

OBJECTIVEnTo describe topics, needs, and concerns related to nutrition and exercise that adolescents and young adults affected by a serious illness (cancer) discuss online.nnnMETHODSnInvestigators conducted a qualitative content analysis of messages related to nutrition and exercise posted on an online young adult cancer forum.nnnRESULTSnAYAs described several functions achieved through nutrition and exercise, such as fighting cancer, losing weight, obtaining nutrients despite side effects of treatment, promoting general health, enjoyment, and promoting mental/emotional health. AYAs also discussed several problems that interfere with nutrition and exercise goals, such as side effects of steroids, physiological problems with eating, safety concerns or physical limitations due to treatment, poor follow through with behavioral change, stress, and low energy.nnnCONCLUSIONnAYAs discuss specific ways nutrition and exercise help achieve a variety of functions that may be physical or psychological, cancer-specific or general. AYAs describe several concerns and barriers that impede their nutrition and exercise goals.nnnPRACTICE IMPLICATIONSnClinicians should also consider relevant medical and personal variables that partly determine nutrition and exercise concerns. Clinicians can anticipate barriers to desired nutrition/exercise change and develop interventions that address these barriers in appropriately tailored ways, including using digital media.

The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults

Young adult cancer survivors (YAs) are confronted with immense financial challenges in the wake of their treatment. Medical bills and loss of savings may cause YAs to forgo recommended medications or follow‐up appointments. Young survivors with financial concerns also report depression, stress and anxiety. The Samfund is a national nonprofit organization that provides financial support to YAs post‐treatment. To quantify the financial burden of cancer in YAs, a retrospective analysis was performed of data collected from Samfund grant applications of 334 YA cancer survivors. Grants were awarded between 2007 and 2013 and grant recipients were consented electronically in 2014 for retrospective data analysis. Recipients ranged from 19 to 39 years of age at the time of their grant applications. Descriptive statistics were calculated and compared to the Medical Expenditure Panel Survey (MEPS) and U.S. census data on age‐matched peers. Financial indicators of YA cancer survivors are worse in many domains than those of age‐matched controls. Furthermore, YA survivors in their 30s report more perilous prefunding financial situations than younger grant recipients. Cancer has a devastating and age‐specific impact on the finances of YAs. Philanthropic grants from the cancer support community, in conjunction with healthcare policy reforms, have the potential to break the cycle of financial need and help YAs move forward with their lives after cancer treatment.