Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study.

PURPOSE: Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients' experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. METHODS: Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease. RESULTS: Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future. CONCLUSION: The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence. IMPLICATIONS FOR CANCER SURVIVORS: Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group.

Survivorship Care Planning and Quality of Life.

Roughly 436,000 survivors are living with a history of head and neck cancer (HNC), accounting for approximately 3% of all cancer survivors in the United States [1, 2]. With advances in treatment, long-term survival is increasingly common in HNC populations. Despite increasing awareness of survivorship issues, many challenges remain. These include lack of knowledge on late and long-term effects of treatment, and poor integration of survivorship care guidelines into oncology practice. Survivorship care plans (SCPs) are increasingly important for HNC survivors to improve quality of long-term survival. Quality survivorship care should focus on management of late and long-term effects of treatment, surveillance for cancer recurrence and second primaries, promotion of healthy lifestyle, and care coordination between providers. This chapter will describe common quality of life (QOL) issues in HNC survivorship, and review the current survivorship care guidelines in HNC.

Outcomes of a National Training Curriculum to Advance Generalist Level Palliative Care.

Background: The adoption of palliative care as an integral component of health care has led to the need for generalist level providers, especially important in serious illnesses such as cancer. Objectives: The goals of this National Cancer Institute-funded training program were to (1) identify the eight domains of quality palliative care applied to oncology practice, (2) demonstrate skills for oncology advanced practice registered nurses (APRNs) in the domains of palliative care, and (3) develop goals for implementing the skills training in practice through process improvement, staff education, and clinical care. Design: The training program led by the End of Life Nursing Education Consortium (ELNEC) project included oncology APRNs in a three-day training course with one-year follow-up for ongoing support and to assess impact. Settings: Five training courses included 430 APRNs from 46 U.S states including both pediatric and adult oncology settings. The project included 25% minority participants. Measurement: Measures included participant goal implementation, course evaluations, and surveys to assess implementation and palliative care practices (precourse, 6 and 12 months postcourse). Results: The ELNEC oncology APRN training course resulted in changes in practice across domains, improved perceived effectiveness in clinical practice, and valuable insight regarding the challenges in generalist level palliative care implementation. Conclusion: The ELNEC oncology APRN course serves as a model for the palliative care field to advance generalist level practice. Future training efforts can build on this project to reach more oncology professionals and those in other areas of serious illness care.

Care Processes and Quality-of-Life Outcomes Affecting the Gynecologic Cancer Survivorship Experience.

PURPOSE: To describe and assess physical and psychosocial concerns and care processes related to cancer and treatment in gynecologic cancer survivors. PARTICIPANTS & SETTING: 44 survivors of gynecologic cancer at City of Hope National Medical Center in southern California were enrolled. METHODOLOGIC APPROACH: A descriptive mixed-methods approach was used. Data were collected on survivorship care plan implementation, supportive care referrals, and barriers to receiving care. Participants completed questionnaires assessing quality of life, unmet needs, and other outcomes at three, six, and nine months after enrollment. Changes over time were analyzed, and quantitative and qualitative results were compared. FINDINGS: The most common unmet needs were stress reduction, side effect management, fear of cancer recurrence (FCR), and perception of adequate communication among the care team. Qualitative themes centered around communication, care coordination, FCR, financial distress, and need for information about peer support and healthy lifestyles. IMPLICATIONS FOR NURSING: Nurses play a key role in coordinating care, assessing symptoms, and addressing psychosocial concerns. Providing education and coaching can reduce stress and facilitate survivors' self-management and self-efficacy.

Educating health care professionals to provide institutional changes in cancer survivorship care.

The Institute of Medicine (IOM) 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition (In M. Hewitt, S. Greenfield and E. Stovall (Eds.), (pp. 9-186). Washington DC: The National Academies Press, 2006) identifies the key components of care that contribute to quality of life for the cancer survivor. As cancer survivorship care becomes an important part of quality cancer care oncology professionals need education to prepare themselves to provide this care. Survivorship care requires a varied approach depending on the survivor population, treatment regimens and care settings. The goal of this program was to encourage institutional changes that would integrate survivorship care into participating centers. An NCI-funded educational program: Survivorship Education for Quality Cancer Care provided multidiscipline two-person teams an opportunity to gain this important knowledge using a goal-directed, team approach. Educational programs were funded for yearly courses from 2006 to 2009. Survivorship care curriculum was developed using the Quality of Life Model as the core around the IOM recommendations. Baseline data was collected for all participants. Teams were followed-up at 6, 12 and 18 months postcourse for goal achievement and institutional evaluations. Comparison data from baseline to 18 months provided information on the 204 multidiscipline teams that participated over 4 years. Teams attended including administrators, social workers, nurse practitioners, registered nurses, physicians and others. Participating centers included primarily community cancer centers and academic centers followed by pediatric centers, ambulatory/physician offices and free standing cancer centers. Statistically significant changes at p = <0.05 levels were seen by 12 months postcourse related to the effectiveness, receptiveness and comfort of survivorship care in participant settings. Institutional assessments found improvement in seven domains of care that related to institutional change. This course provided education to participants that led to significant changes in survivorship care in their settings.

Using Goal Achievement as an Outcome Measure Following a Gero-Oncology Educational Program for Oncology Nurses: The GrOW Curriculum.

PURPOSE: This article describes the qualitative analysis of goal achievement by oncology nurses who attended a gero-oncology course. PARTICIPANTS & SETTING: Four annual programs were completed and included 140 teams of oncology nurses from cancer settings across the United States. METHODOLOGIC APPROACH: Self-determination theory and achievement goal theory provided the conceptual framework for understanding what motivates people to achieve goals and how goals can measure outcomes. SMART goals were used to measure outcomes and barriers. FINDINGS: Goal achievement at 18 months showed that 70% of developed goals were in process or completed. The top three goal categories were professional education, structure/team building, and resource development. Top barriers included time constraints and staffing shortages. IMPLICATIONS FOR NURSING: Encouraging oncology nurses to set specific goals while attending an educational program supports successful integration of new knowledge in their practice setting.

Geriatric Oncology Workshop (GrOW): Development and Evaluation of a Nationwide Nursing Curriculum.

INTRODUCTION: Oncology nurses are key in caring for older adults with cancer, but few have received specialized training in gerontology. To address this, a geriatric oncology curriculum was developed for oncology nurses. MATERIALS & METHODS: The Geriatric Oncology Workshop (GrOW) was developed and delivered to oncology nurses (n = 387) from 2016 to 2019. Workshops were evaluated using: 1) Assessment of preparedness, comfort, and skills; 2) Knowledge gained; 3) Participant evaluations of workshop (4-point Likert-type scale); 4) Faculty evaluations (10-point Likert-type scale); and 5) Follow-up assessment of goals. Descriptive statistics (frequencies, proportions, medians, means) were used to describe participants and results. Paired t-test was used to evaluate participants' knowledge gain, and linear mixed modeling was used to evaluate longitudinal changes in preparedness, comfort, and skill levels. RESULTS: Overall, 387 oncology nurses participated in GrOW. Participant-rated workshop evaluation means were 3.7 to 3.9. Overall, nurses had statistically significant increases in pre- to post- questionnaire scores of 18.8% (p < 0.001) in workshop 1, 26.8% (p < 0.001) in workshop 2, 24.9% (p < 0.001) in workshop 3, and 18.6% (p < 0.001) in workshop 4, with an overall mean of 22.4% (p < 0.001) knowledge gained for all four workshops. Nurses reported an increase in skill, comfort, and preparedness at 18 months for workshop 1, 2, and 3 and in skill and comfort at 12 months for workshop 4 (p < 0.01). Faculty evaluation scores ranged from 9.3 to 10.0. DISCUSSION: A geriatric oncology curriculum designed for oncology nurses can improve levels of evidence-based knowledge and provide more skill, comfort, and preparedness in caring for this population.

Nurses' response to spiritual needs of cancer patients.

PURPOSE: In this qualitative study, nurses from the United States of America (USA) and Switzerland were asked to recount their spiritual care experiences with cancer patients and their own responses to their patients' spiritual needs. Recent advances in cancer care have highlighted the importance of spirituality and spiritual care as part of quality palliative care from the time of a patient's diagnosis through end of life. Nurses who play an important role in supporting patients, describe their own discomfort when confronting their patients' spiritual needs. METHODS: A qualitative survey was used to collect narratives of nurses' experiences in responding to spiritual care needs (n = 62). The accounts were analyzed using thematic analysis. RESULTS: Nurses identified patients as having spiritual needs and their own experiences in addressing spirituality or religion. Patients sought meaning in their illness, which, they believed, led to disease acceptance. Nurses reported their patients' struggles with challenging disease situations and their own challenges in addressing patients' spirituality/religion. With experience, nurses developed ways of talking with patients about spirituality/religion, which profoundly impacted their own lives and resulted in personal growth. CONCLUSION: Patients' spirituality was identified by nurses who tried to address patients' spiritual needs drawing on existing resources. For nurses, supporting patients in their spirituality and finding meaning in the disease situation eventually led to disease acceptance.

Preparing Oncology Advanced Practice RNs as Generalists in Palliative Care.

OBJECTIVES: To train and support oncology advanced practice RNs (APRNs) to become generalist providers of palliative care. SAMPLE & SETTING: APRNs with master's or doctor of nursing practice degrees and at least five years of experience in oncology (N = 165) attended a National Cancer Institute-funded national training course and participated in ongoing support and education. METHODS & VARIABLES: Course participants completed a precourse, postcourse, and six-month follow-up evaluation regarding palliative care practices in their settings, course evaluation, and their perceived effectiveness in applying course content in their practice. RESULTS: The precourse results showed deficiencies in current practice, with a low percentage of patients having palliative care as part of their oncology care. Barriers included lack of triggers that could assist in identifying patients who could benefit from palliative care. Six-month postcourse data showed more APRNs participating in family meetings, recommending palliative care consultations, speaking with family members regarding bereavement services, and preparing clinical staff for impending patient deaths. IMPLICATIONS FOR NURSING: APRNs require palliative care training to integrate this care within their role. APRNs can influence practice change and improve care for patients in their settings.

Fear of Cancer Progression: Findings From Case Studies and a Nurse-Led Intervention.

BACKGROUND: Fear of cancer recurrence or progression (FOP) is a significant concern for cancer survivors. With the advent of new targeted therapies and immunotherapy, many patients with advanced cancer are living longer while dealing with uncertainty and fears related to cancer progression. Although some level of FOP is normal and adaptive, high levels adversely affect quality of life and healthcare costs. OBJECTIVES: This article describes a nurse-led intervention for managing FOP in two patients with advanced gynecologic cancer. The intervention teaches skills for managing worry, challenging unhelpful beliefs, and modifying unhelpful coping behaviors. METHODS: Preliminary findings from the two case studies are presented, including a comparison of post-treatment FOP scores to baseline scores. FINDINGS: The participants reported feeling more focused, less overwhelmed, and more in control of their worries. Both participants achieved statistically reliable improvements in FOP scores.

A nurse-led intervention for fear of cancer progression in advanced cancer: A pilot feasibility study.

PURPOSE: To assess the feasibility, acceptability, and preliminary effects of a nurse-led intervention for managing fear of cancer progression in advanced cancer patients. METHODS: A single group mixed methods study was conducted in patients with stage III or IV gynecologic or lung cancer (n = 31) with dysfunctional levels of fear of progression or distress. The intervention consisted of seven videoconferencing sessions with skills practice. Feasibility measures included enrollment rate, attendance, attrition, and home practice adherence. Acceptability was based on exit interview responses. Content analysis was used to analyze the qualitative data. Participants completed quantitative questionnaires assessing fear of progression and secondary outcomes at baseline, eight, and 12 weeks. Linear mixed model analysis was used to assess changes in outcome measures. RESULTS: The average enrollment rate was seven participants/month over 4.5 months. Participants attended a mean of 5.3 of seven sessions. Attrition rate was 30%. The analysis showed improvements over time in fear of progression and exploratory outcomes. Participants reported feeling calmer and more focused. The skills practice helped to manage anxiety and fears. Themes included: Struggling with fears, Refocusing the fears, and Realizing/reaffirming what is important in life. The most beneficial components included the values clarification exercise, detached mindfulness and worry postponement practices. CONCLUSION: The intervention was acceptable; most feasibility criteria were met. Preliminary data suggest that the intervention reduced fear of progression and improved secondary outcomes. The intervention required a significant time commitment by participants, which may have contributed to increased attrition. To decrease burden, we will shorten the intervention.

The evolving paradigm of adult cancer survivor care.

As a result of earlier diagnosis and improved treatment, the number of cancer survivors is steadily increasing, with over 11 million in the US today. These survivors face a multitude of long-term and late effects as a result of their cancer and its treatment. It is increasingly recognized that this group has complex and ongoing needs for medical care education, surveillance, screening, and support. Many organizations have helped to advance survivorship care; key among them are the National Coalition for Cancer Survivorship, the Institute of Medicine, the Lance Armstrong Foundation, and the Office of Cancer Survivorship of the National Cancer Institute. Important reports have defined goals of care; identified interventions to improve outcomes among survivors; and recognized the need for posttreatment surveillance, healthy lifestyle behaviors, and continued research in all of these areas. With these advances, survivorship care is emerging as a distinct component of the continuum of care in oncology.

Communication Concerns When Transitioning to Cancer Survivorship Care.

OBJECTIVES: To discuss communication needs that relate to transitioning care for cancer survivors and strategies to facilitate patient-centered communication. DATA SOURCES: National Cancer Institute monograph and peer reviewed articles related to survivorship and communication. CONCLUSION: Key communication tasks in survivorship include managing uncertainty, exchanging information, and enabling self-management. These tasks inform assessment strategies and interventions in survivorship care planning. Communication training must target survivors and providers given the reciprocal and interactive nature of communication. IMPLICATIONS FOR NURSING PRACTICE: Implications for Nursing Practice: Nurses need to evaluate survivors' concerns and incorporate communication strategies in survivorship care planning to reduce distress and facilitate the exchange of information to improve referrals to supportive care resources.

Nurse Education and Survivorship: Building the Specialty Through Training and Program Development
.

BACKGROUND: As the number of cancer survivors in the United States continues to grow, the need to educate healthcare providers in the components of survivorship care remains a challenge in the current healthcare system. Survivors have unique concerns and follow-up requirements that are key to minimizing their risks for recurrence and supporting quality of life.
. OBJECTIVES: This article describes the impact of the curriculum, faculty, and teaching methods for an educational program to prepare nurses to provide cancer survivorship care.
. METHODS: Mixed methods with quantitative and qualitative approaches were used.
. FINDINGS: Course content and faculty received high scores in the evaluations. Analysis of the most common goals implemented by participants after the course focused on providing professional education, planning the process for survivorship care, and implementing treatment summaries and survivorship care plans.

Facilitating survivorship program development for health care providers and administrators.

PURPOSE: This manuscript will describe institutional changes observed through goal analysis that occurred following a multidisciplinary education project, aimed at preparing health care professionals to meet the needs of the growing numbers of cancer survivors. METHOD: Postcourse evaluations consisted of quantitative questionnaires and follow-up on three goals created by each participating team, during the 3-day educational program. Evaluations were performed 6, 12, and 18 months postcourse for percent of goal achievement. Goals were a priori coded based on the Institute of Medicine's survivorship care components along with two additional codes related to program development and education. RESULTS: Two hundred and four teams participated over the four yearly courses. A total of 51.6 % of goals were related to program development, 21 % to survivorship care interventions, 20.9 % on educational goals, and only 4.7 % related to coordination of care, 1.4 % on surveillance, and 0.4 % related to prevention-focused goals. Quantitative measures postcourse showed significant changes in comfort and effectiveness in survivorship care in the participating institutions. CONCLUSION: During the period 2006-2009, health care institutions focused on developing survivorship care programs and educating staff, in an effort to prepare colleagues to provide and coordinate survivorship care, in cancer settings across the country. IMPLICATIONS FOR CANCER SURVIVORS: Goal-directed education provided insight into survivorship activities occurring across the nation. Researchers were able to identify survivorship care programs and activities, as well as the barriers to developing these programs. This presented opportunities to discuss possible interventions to improve follow-up care and survivors' quality of life.

Palliative care needs of cancer survivors.

OBJECTIVES: To describe the importance of early integration of palliative care into cancer survivor care. To discuss common symptoms experienced by cancer survivors and how integration of palliative care can improve management. DATA SOURCES: Peer-reviewed literature, Clinical Practice Guidelines for Quality Palliative Care, Institute of Medicine report: From Cancer Patient to Cancer Survivor-Lost in Transition. CONCLUSION: Primary symptoms may vary depending on disease, age, treatment, and other comorbidities. A multidisciplinary palliative care team can help manage the primary late effects for cancer survivors including fatigue, depressive symptoms, anxiety and distress, pain, and sleep disturbance. IMPLICATIONS FOR NURSING PRACTICE: The long-term and late effects of cancer survivors will best be provided for by knowledgeable nurses who can anticipate and integrate palliative care into survivorship care early in their treatment plan.

Spirituality in cancer care at the end of life.

There is a compelling need to integrate spirituality into the provision of quality palliative care by oncology professionals. Patients and families report the importance of spiritual, existential, and religious concerns throughout the cancer trajectory. Leading palliative care organizations have developed guidelines that define spiritual care and offer recommendations to guide the delivery of spiritual services. There is growing recognition that all team members require the skills to provide generalist spiritual support. Attention to person-centered, family-focused oncology care requires the development of a health care environment that is prepared to support the religious, spiritual, and cultural practices preferred by patients and their families. These existential concerns become especially critical at end of life and following the death for family survivors. Oncology professionals require education to prepare them to appropriately screen, assess, refer, and/or intervene for spiritual distress.

Integrating a cancer-specific geriatric assessment into survivorship care.

Older adults constitute the greatest percentage of cancer survivors in the country, with 61% being aged 65 years and older. Assessing older adult cancer survivors beyond chronological age to include changes in functional status is an essential process to help nurses anticipate cancer treatment impact and aid in planning individualized survivorship care. The objective of this article is to identify a method to assess older adult cancer survivors to be used in tailoring survivorship care. A review of geriatric literature was conducted through MEDLINE(®) and PubMed from 1997-2011 and focused on the pathophysiology of aging, cancer impact, and comorbidities in this population. Results were combined with previous research to provide an evidence-based approach to assessing older cancer survivors. The resulting assessment provides valuable information on the functional status of older adult patients with cancer. This assessment can be used by nurses to develop treatment plans and tailor management strategies to improve quality of life.