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.

Palliative Care in the New Era of Lung Cancer Treatment.

Lung cancer remains the most common malignancy and is recognized as having significant impact on quality of life. Advances in lung cancer treatment over the past decade have been significant, with new agents extending life, even in late-stage disease. The purpose of this study was to evaluate palliative care needs and use of supportive care services in a randomly selected sample (N = 99) of patients with lung cancer. Results indicated that despite treatment advances, these patients continue to have significant symptom and quality of life concerns and to receive limited palliative care or supportive care services. Integration of palliative care is needed in the new era of lung cancer treatment.

Family Caregiver Preparedness: Developing an Educational Intervention for Symptom Management.

BACKGROUND: Family caregivers provide complex care for patients with cancer, including management of multiple symptoms associated with the disease and its treatment. OBJECTIVES: The objective of this pilot project was to develop and conduct feasibility testing of a family caregiver educational intervention for symptom management. METHODS: The intervention was conducted with 23 family caregivers of patients with lung or gynecologic cancer to evaluate feasibility testing and assessment of caregiver preparedness, quality of life, and psychological distress at baseline and three and seven weeks postintervention. FINDINGS: Family caregivers were very interested in education related to their role in symptom management, with management of constipation, dyspnea, and diarrhea as the highest priorities. The intervention was feasible and valuable in assisting family caregivers in assessing symptoms and making decisions regarding treatment choices.

Implementing quality improvement efforts in spiritual care: outcomes from the interprofessional spiritual care education curriculum.

The Interprofessional Spiritual Care Curriculum (ISPEC) was created to train interdisciplinary health care teams to recognize and address the spiritual needs of seriously or chronically ill patients. The curriculum, in a train-the-trainer format, employs didactic presentations, discussions, lab sessions, skill demonstrations, and video clips. In course applications, participants were required to submit goals to achieve and demonstrate institutional support. For the first ISPEC course, in July 2018, 48 clinician-chaplain teams attended. Following the 2½ day course, participants had access to online training modules for 1-year, ISPEC faculty mentoring support, and regular conference calls on goal implementation progress. Participants reported recognizing the importance of providing spiritual care and a new understanding of how collaborating as interprofessional teams enabled them to integrate this care into their home institution settings. In a mixed-methods evaluation survey completed 12 months after the ISPEC course, participants reported on the percentage of their goals completed, number and types of professionals they had educated in spiritual care, and personal confidence regarding spiritual care leadership skills. This data can serve as a model to guide other organizations striving to improve spiritual care, practiced collaboratively by clinicians and chaplains, as an essential aspect of overall QI efforts in palliative care.

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.

Integrating Palliative Care for Patients on Clinical Trials: Opportunities for Oncology Nurses.

The purpose of this article is to describe the lessons learned in the course of a 5-year research study on a palliative care intervention for persons on a Phase 1 clinical trial. Patients who are participating in Phase 1 trials and the families who care for them may be especially vulnerable and require special attention. The patients are generally experiencing the effects of advanced disease, and they also may soon experience unknown side effects, intense treatment regimens, and the emotional stress of an uncertain future as a result of clinical trial participation. Oncology nurses in all roles including clinical trials/research nurses, clinicians, educators, and advanced practice registered nurses play a critical role in addressing the quality-of-life concerns in this population. Palliative care can provide better symptom control and information on treatment options and facilitate a better understanding of patient/family goals. Attending to these factors can ultimately mean improved survival for the advanced cancer patient, and support for these patients can assist in advancing the field of oncology as these investigational therapies hold the promise for enhancing survival.

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.

Spirituality in cancer patients on phase 1 clinical trials.

OBJECTIVES: Patients with cancer who are at a transition to Phase I investigational treatments have been identified as an underserved population with regard to palliative care. This disease transition is often accompanied by spiritual and existential concerns. The study objective was to conduct a secondary analysis of data from a larger study testing a palliative care intervention. This paper reports the findings of this secondary focus on the spiritual needs of this population. METHODS: Patients (n = 479) were accrued to this study prior to initiating a Phase I clinical trial with data collected at baseline, and 4, 12, and 24 week follow-up. RESULTS: Qualitative data revealed that the transition to Phase 1 trial participation is a time of balancing hope for extended life with the reality of advancing disease. Quantitative results demonstrated increased spirituality over time in both religious- and non-religious-affiliated patients. CONCLUSIONS: Patients entering Phase I trials have important spiritual needs as they face treatment decisions, advancing disease, and often mortality. Spiritual care should be provided to seriously ill patients as a component of quality care.

Clinical Trials: Understanding Patient Perspectives and Beliefs About Treatment.

BACKGROUND: Understanding the experiences of patients with solid tumors who are in phase 1 clinical trials can help nurses to provide optimal care. OBJECTIVES: The purpose of this article is to describe patient perspectives of participating in a phase 1 trial and understanding their disease status and treatment options. In addition, the authors describe the impact of the disease and clinical trial participation on quality of life. METHODS: 30 patients were interviewed and audio recorded; the interviews were transcribed and content analysis methods were used to identify common themes. FINDINGS: Patients reported participating in the phase 1 clinical trial because their doctors informed and encouraged them, they had no other treatment options if they wanted to live longer, or they wanted to help future patients with cancer. Most believed that participation would improve or stabilize their illness and quality of life. They believed that, when the clinical trial ended, there would be new treatments. Participants reported that healthcare providers and family members provided support, and that compassion, cultural awareness, spiritual support, and the need for individual attention were important.

Pain and Suffering.

OBJECTIVE: To review literature on the relationship of pain, spirituality, and suffering as it relates to the patient with cancer who is experiencing pain. DATA SOURCES: Peer-reviewed articles, textbooks, internet. CONCLUSION: Pain and suffering are distinct and yet closely related in patients with cancer. Oncology nurses are important in assessing a patient's pain, including dimensions of spirituality and suffering. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are the front line of pain management for patients. This includes recognizing existential distress and suffering and responding to suffering.

A Support Intervention for Family Caregivers of Advanced Cancer Patients.

Family caregivers are the primary providers of care. Education and support are needed to prepare them for the complex physical, psychological, social, and spiritual effects of cancer. This randomized clinical trial tested a palliative care intervention with 240 family caregivers, focusing on family caregivers who reported financial strain from cancer and treatment. A four-part educational program demonstrated improved outcomes in the intervention group in the measures of objective burden, caregiving preparation, and quality of life. The role of advanced practitioners in providing tailored psychoeducation and support to caregivers is important in order to meet the integral needs of patients with cancer as well as to enhance caregiver self-care.

Translation and Evaluation of a Lung Cancer, Palliative Care Intervention for Community Practice.

CONTEXT: A notable gap in the evidence base for palliative care (PC) for cancer is that most trials were conducted in specialized centers with limited translation and further evaluation in "real-world" settings. Health systems are desperate for guidance on effective, scalable models. OBJECTIVES: The objective of this study was to determine the effects of a nurse-led PC intervention for patients with non-small-cell lung cancer and their family caregivers (FCGs) in a community-based setting. METHODS: Two-group, sequential, quasi-experimental design with Phase 1 (usual care [UC]) followed by Phase 2 (intervention) was conducted at three Kaiser Permanente Southern California sites. Participants included patients with Stage 2-4 non-small-cell lung cancer and their FCG. Standard measures of quality of life (QOL) included Functional Assessment of Cancer Therapy-Lung, Functional Assessment of Chronic Illness Therapy-Spirituality Subscale, City of Hope Family QOL; other outcomes were distress, health care utilization, caregiver preparedness, and burden. RESULTS: Patients in the intervention cohort had significant improvements in three (physical, emotional, and functional well-being) of the five QOL domains at one month that were sustained through three month compared to UC (P < 0.01). Caregivers in the intervention cohort had improvements in physical (P = 0.04) and spiritual well-being (P = 0.03) and preparedness (P = 0.04) compared to UC. There were no differences in distress or health care utilization between cohorts. CONCLUSION: Our findings suggest that a research-based PC intervention can be successfully adapted to community settings to achieve similar, if not better, QOL outcomes for patients and FCGs compared to UC. Nonetheless, additional modifications to ensure consistent referrals to PC and streamlining routine assessments and patient/FCG education are needed to sustain and disseminate the PC intervention.

Family Caregivers: A Qualitative Study to Better Understand the Quality-of-Life Concerns and Needs of This Population.

BACKGROUND: While providing physical, psychological, and spiritual care to their loved ones with cancer, family caregivers (FCGs) are physically and emotionally vulnerable to the tolls of caregiving. Patients and FCGs experience the uncertainty that comes with illness and treatment, its side effects, the lack of control, the emotional upheaval, the spiritual doubt, and the helplessness of advancing disease. OBJECTIVES: This study was conducted to better understand the quality-of-life needs of the FCG population, particularly those who encounter financial strain related to patients' cancer and treatment. METHODS: This qualitative study of FCG concerns was conducted in association with a randomized trial of an FCG support intervention. Twenty FCGs of patients with solid tumor cancers were interviewed in person or via telephone for this study. The FCG version of the City of Hope quality-of-life tool, which consists of four domains of well-being (physical, psychological, social, spiritual), was applied to the content analysis of interviews. FINDINGS: Care for FCGs is needed across all quality-of-life domains.

Understanding Family Caregiver Communication to Provide Family-Centered Cancer Care.

OBJECTIVES: To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. DATA SOURCES: Case studies based on interviews with oncology family caregivers. CONCLUSION: Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. IMPLICATIONS FOR NURSING PRACTICE: Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict.

Integration of a Palliative Care Intervention into Community Practice for Lung Cancer: A Study Protocol and Lessons Learned with Implementation.

BACKGROUND: A notable gap in the evidence base for outpatient palliative care (PC) for cancer is that most trials were conducted in specialized oncology or academic centers with limited translation and further evaluation in "real-world" settings. Health systems are desperate for guidance regarding the most effective and sustainable PC service models. OBJECTIVE: Describe the study protocol to evaluate the dissemination of a previously tested nurse-led PC intervention (PCI) for patients with lung cancer and their family caregiver in community-based settings, lessons learned in adapting and implementing the PCI, and implications for future dissemination-translational efforts Design: Two-group, prospective sequential, quasi-experimental design with Phase 1 (Usual care) followed by Phase 2 (Intervention) setting/subjects. Three Kaiser Permanente Southern California sites. Patients with stage 2-4 nonsmall cell lung cancer and their caregiver. MEASUREMENTS: Standard measures of quality of life (QOL; FACT-L, FACIT- SP12, City of Hope Family QOL), symptom burden, distress, and caregiver preparedness and perceived burden. RESULTS: Adaptations were made to the PCI (comprehensive patient/caregiver assessment, interdisciplinary care planning, and patient/caregiver education) to harmonize with existing workflows, minimize burden to patients, caregivers, and the PC team, and maximize chances of sustainability. Implementation facilitators include external competitive pressures, internal readiness, and adaptability of the PCI. Barriers include the changing lung cancer therapeutic landscape and perceived need for PC support by patients and providers, insufficient staffing, and people-dependent processes. CONCLUSIONS: Efforts to disseminate and implement previously tested PC models into real-world community practices need to be more realistic and consider the local context.

Cancer Communication and Family Caregiver Quality of Life.

Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient's medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH) Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.

Palliative care and spiritual well-being in lung cancer patients and family caregivers.

BACKGROUND: Spiritual well-being is an important dimension of quality of life (QOL) and is a core component of quality oncology and palliative care. In this analysis, we aimed to describe spiritual well-being outcomes in a National Cancer Institute (NCI)-supported Program Project that tested the effectiveness of an interdisciplinary palliative care intervention in lung cancer patients and their family caregivers (FCGs). METHODS: Patients undergoing treatments for NSCLC and their FCGs were enrolled in a prospective, quasi-experimental study. Patients and FCGs in the intervention group were presented at interdisciplinary care meetings and received four educational sessions that included one session focused on spiritual well-being. Spiritual well-being for patients was measured using the FACIT-Sp-12, and FCG spiritual well-being was measured using the COH-QOL-FCG spiritual well-being subscale. Multivariate analysis of covariance was undertaken for subscale and item scores at 12 weeks, controlling for baseline, by religious affiliations (yes or no) and group assignment. RESULTS: Religiously affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared to non-affiliated patients. Non-affiliated patients had better scores for feeling a sense of harmony within oneself. By group, patients who received the intervention had significantly better scores for the Meaning/Peace subscale. CONCLUSIONS: Our findings support the multidimensionality of spiritual well-being that includes constructs such as meaning and faith for lung cancer patients and FCGs with or without religious affiliations. Palliative care interventions should include content that targets the spiritual needs of both patients and FCGs. Copyright © 2015 John Wiley & Sons, Ltd.

Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention.

Consistent with the recommendations of the Institute of Medicine Report on quality cancer care, attention to symptom management and quality of life concerns of patients with lung cancer should be addressed throughout the disease trajectory. As part of a NCI-funded Program Project grant, this paper reports on the patient and family caregiver education component of a nurse-lead, tailored palliative care intervention for patients with early (I-III, n=130) and late (IV, n=142) stage lung cancer. Patients and family caregivers received 4 separate educational sessions organized around the Quality of Life model domains (physical, psychological, social, and spiritual well-being). Each patient and caregiver was presented at a weekly interdisciplinary case conference which also informed the educational sessions. Based on needs and team suggestions, an individualized palliative care plan was created and a tailored educational intervention was designed based on topics chosen by each participant. The most common topics chosen by patients in each domain were fatigue, worry and fear, social support/isolation, and hope. Family caregivers most commonly chose fatigue, worry and fear, communication, and purpose and meaning in life. The mean time spent in each teaching session ranged from 31 to 44 minutes for patients and 25 to 35 minutes for family caregivers. There is a vital need for interdisciplinary palliative care interventions for patients across all stages and across the disease trajectory. Nurses are vital to integrating palliative care into routine care. Providing a tailored educational intervention is an important aspect of palliative care for patients and family caregivers. This paper focuses on the process of the tailored educational intervention.

Interdisciplinary Palliative Care for Patients With Lung Cancer.

CONTEXT: Palliative care, including symptom management and attention to quality of life (QOL) concerns, should be addressed throughout the trajectory of a serious illness such as lung cancer. OBJECTIVES: This study tested the effectiveness of an interdisciplinary palliative care intervention for patients with Stage I-IV non-small cell lung cancer (NSCLC). METHODS: Patients undergoing treatments for NSCLC were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. Patients in the intervention group were presented at interdisciplinary care meetings, and appropriate supportive care referrals were made. They also received four educational sessions. In both groups, QOL, symptoms, and psychological distress were assessed at baseline and 12 weeks using surveys which included the Functional Assessment of Cancer Therapy-Lung and the Lung Cancer Subscale, the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, and the Distress Thermometer. RESULTS: A total of 491 patients were included in the primary analysis. Patients who received the intervention had significantly better scores for QOL (109.1 vs. 101.4; P < 0.001), symptoms (25.8 vs. 23.9; P < 0.001) spiritual well-being (38.1 vs. 36.2; P = 0.001), and lower psychological distress (2.2 vs. 3.3; P < 0.001) at 12 weeks, after controlling for baseline scores, compared to patients in the usual care group. Patients in the intervention group also had significantly higher numbers of completed advance care directives (44% vs. 9%; P < 0.001), and overall supportive care referrals (61% vs. 28%; P < 0.001). The benefits were seen primarily in the earlier stage patients vs. those with Stage IV disease. CONCLUSION: Interdisciplinary palliative care in the ambulatory care setting resulted in significant improvements in QOL, symptoms, and distress for NSCLC patients.

Death awareness, feelings of uncertainty, and hope in advanced lung cancer patients: can they coexist?

Patients diagnosed with stage-IV lung cancer are forced to quickly transition from a cancer-free and perhaps healthy life to one of serious illness, uncertainty, and anticipation of a premature death. Health professionals may be too quick to label the patient as being in denial if they hope for healing. Hope may not be lost when reality is accepted. Studies have investigated what it is like to live with awareness of impending death. Using a patient case study this paper discusses the concepts of death awareness, uncertainty, and hope. The aim is to provide a deeper understanding of how these seemingly antithetical emotions can coexist to the benefit of the patient, and to provide clinicians with practical considerations for supporting patients' hope throughout their terminal illness.