Valued Outcomes in the Cancer Experience (VOICE)™: Development and validation of a multidimensional measure of perceived control.

OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.

"We're Just Not Prepared for Eating Over Our Whole Life": A Mixed Methods Approach to Understanding Dietary Behaviors Among Longer Term Cancer Survivors.

BACKGROUND: In many countries, there are growing numbers of persons living with a prior diagnosis of cancer, due to the aging population and more successful strategies for treatment. There is also growing evidence of the importance of healthful diet and weight management for survivorship, yet many long-term cancer survivors are not successfully following recommendations. METHODS: We explored this issue in a mixed methods study with 53 adult survivors of 3 cancers (breast, prostate, and non-Hodgkin's lymphoma), living in Maryland. Participants provided three 24-hour dietary recalls, and results were used to classify respondents on 2 metrics of healthful eating (the Healthy Eating Index 2010, and a 9-item index based on current dietary recommendations). Recalls were also used to guide in-depth qualitative discussions with participants regarding self-assessment of dietary behaviors, healthful eating, and diet's importance in cancer prevention and survivorship. RESULTS: Survivors following a more healthful diet were more likely to be female, have greater socioeconomic resources, more years since diagnosis, normal weight, and no smoking history. Qualitative discussions revealed a more nuanced understanding of dietary strategies among healthful eaters, as well as the importance of household members in dietary decision making. DISCUSSION: Most survivors had received little nutrition counseling as part of their cancer care, highlighting the importance of holistic, household-oriented nutrition education for maintaining health among long-term cancer survivors.

Clinical care providers' perspectives on body size and weight management among long-term cancer survivors.

OBJECTIVE: To examine clinical care providers' perspectives on cancer survivors' body size and weight management. STUDY DESIGN: In-depth, semi-structured, qualitative interviews. METHODS: Interviews were conducted with 33 providers (eg. oncologists, surgeons, primary care providers, nurses, dietitians) across academic and community clinical settings. They were transcribed, coded, and analyzed thematically using constant comparative analysis. RESULTS: Providers conceptualized weight in relation to acute treatment, cancer outcomes, or overall health/comorbidities. These patterns were reflected in their reported framing of weight discussions, although providers indicated that they counsel patients on weight to varying extents. Perspectives differed based on professional roles and patient populations. Providers reported that survivors are motivated to lose weight, particularly due to comorbidity concerns, but face numerous barriers to doing so. CONCLUSION: Providers described survivor-level and capacity-level factors influencing survivors' weight management. Differences by provider type highlighted the role of provider knowledge, attitudes, and beliefs in clinical encounters. Opportunities for research and intervention include developing and disseminating evidence-based clinical resources for weight management among cancer survivors, addressing capacity barriers, and exploring communication strategies at interpersonal and population levels.

The evolution of breast cancer navigation and survivorship care.

Over the last several decades, breast screening, diagnosis, and treatment have evolved. With that evolutionary process, so have the complexities of oncology care, especially from the perspective of more fragmented care occurring. The majority of breast care is outpatient based. The need for patient navigation has heightened as this fragmentation and financial issues set before the oncologist and the patient continue to occur and in many situations increase. Without effective navigation, breast patients can fall through the cracks and not get diagnosed as early as possible, or not receive all appropriate treatment they need. We are also seeing a steady increase in the actual number of breast cancer patients being diagnosed and surviving long term. Unfortunately simultaneous to this happen there is also a growing shortage of oncology specialists in the USA. This results in a need to transition survivors back to their community physicians after the completion of their acute treatment, and to do so in an organized, anticipated manner that prepares the survivor and her PCP and gynecologist, the tools they all need for effective cancer survivorship management.

NCCN roundtable: talking to children about cancer.

A roundtable presentation at the NCCN 19th Annual Conference focused on the child's experience when a parent has cancer and concluded that honest communication, appropriate to the child's age and temperament, is essential, and that oncology providers should institute programs that help families deal with the illness.

Cancer rehabilitation may improve function in survivors and decrease the economic burden of cancer to individuals and society.

BACKGROUND: Cancer and its treatment may cause physical impairments and psychological distress in survivors. Rehabilitation is a critical component of quality cancer care, returning survivors to their highest functional potential. OBJECTIVE: This overview focuses on the benefits of multidisciplinary cancer rehabilitation - including improving physical function, reducing psychological distress, promoting return to work and, therefore, decreasing the economic burden of cancer and its treatment on individuals and society in general. METHODS: Relevant literature was identified through a search of the PubMed database and reviewed for its relevance to cancer rehabilitation and the topic of this article. Search terms included, but were not limited to, cancer rehabilitation, cancer prehabilitation, disability, return to work, employment, and unemployment. RESULTS: Cancer survivors are less likely to be employed and take more sick leave than workers without a history of cancer. Pain, musculoskeletal issues, deconditioning, fatigue, balance, psychosocial issues, and lymphedema are most amenable to rehabilitation. CONCLUSION: Overall health and the need for work accommodations must be addressed in order to improve return to work and subsequent productivity in cancer survivors. Survivors are usually best served by a multidisciplinary care team comprising members who can address the myriad impairments affecting survivor function.

Development of a breast navigation program.

OBJECTIVES: To review the development of a navigation program in a major US academic health care institution, and provide guidance for navigation programmatic development in other settings. DATA SOURCES: The Johns Hopkins Breast Center Steering Committee minutes, Hospital Cancer Registry; administrative data, and literature. CONCLUSION: Incorporating navigation services throughout the cancer continuum, from diagnosis to survivorship, provides guidance for patients with cancer. Navigation processes and programs must remain dynamic, reflecting patient and community needs. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses have traditionally performed many tasks associated with navigation, including patient education, psychosocial support, and addressing barriers to care. This article provides an exemplar for nurses developing or enhancing comprehensive breast programs.

Communicating with patients on treatment options for advanced disease.

A diagnosis of advanced cancer is devastating to patients and their families. The cancer care team has typically been ineffective in communicating honestly but sensitively on issues of concern, including treatment options, prognosis, and factors that affect quality-of-life. In a presentation at the NCCN 18th Annual Conference, palliative care experts Dr. Anthony Back and Ms. Lillie D. Shockney discussed the challenge of communicating about advanced disease, offered a new paradigm, and described approaches that can make physicians and nurses more comfortable and more effective in this role.

Defining Value in Cancer Care: AVBCC 2013 Steering Committee Report.

The AVBCC Annual Meeting experiences exponential growth in attendance and participation as oncologists, payers, employers, managed care executives, patient advocates, and drug manufacturers convened in Hollywood, FL, on May 2-5, 2013, for the Third Annual Conference of the Association for Value-Based Cancer Care (AVBCC). The conference presented an all-inclusive open forum for stakeholder dialogue and integration across the cancer care continuum, facilitating an open dialogue among the various healthcare stakeholders to align their perspectives around the urgent need to address value in cancer care, costs, patient education, safety, outcomes, and quality. The AVBCC 2013 Steering Committee was held on the first day of the conference to define value in cancer care. The committee was divided into 7 groups, each representing a key stakeholder in oncology. The goal of the Steering Committee was to define value from the particular point of view of each of the stakeholder groups and to suggest how that particular perspective can contribute to the value proposition in oncology, by balancing cost, quality, and access to care to improve overall patient outcomes. The following summary highlights the major points addressed by each group.

Problem solving for breast health care delivery in low and middle resource countries (LMCs): consensus statement from the Breast Health Global Initiative.

International collaborations like the Breast Health Global Initiative (BHGI) can help low and middle income countries (LMCs) to establish or improve breast cancer control programs by providing evidence-based, resource-stratified guidelines for the management and control of breast cancer. The Problem Solving Working Group of the BHGI 2010 Global Summit met to develop a consensus statement on problem-solving strategies addressing breast cancer in LMCs. To better assess breast cancer burden in poorly studied populations, countries require accurate statistics regarding breast cancer incidence and mortality. To better identify health care system strengths and weaknesses, countries require reasonable indicators of true health system quality and capacity. Using qualitative and quantitative research methods, countries should formulate cancer control strategies to identify both system inefficiencies and patient barriers. Patient navigation programs linked to public advocacy efforts feed and strengthen functional early detection and treatment programs. Cost-effectiveness research and implementation science are tools that can guide and expand successful pilot programs.

Evolution of patient navigation.

The role of nurses in patient navigation has evolved over more than four decades. Navigators in cancer care can guide patients through the physical, emotional, and financial challenges that come with a diagnosis of cancer and facilitate communication among healthcare providers. Navigation has the potential to improve patient outcomes and system efficiency. Oncology nurses are well suited to help patients with cancer navigate the healthcare system from diagnosis and treatment through survivorship and palliative care.