Longitudinal changes in function, symptom burden, and quality of life in patients with early-stage lung cancer.

BACKGROUND: Emerging evidence supports the integration of palliative care concurrently with disease-focused care in patients with serious illnesses, such as lung cancer. This paper describes how longitudinal changes in physical function, symptom burden, and QOL of patients with early-stage non-small cell lung cancer (NSCLC) informed the development of an interdisciplinary, tailored palliative care intervention. METHODS: Patients with early stage (I-IIIB) NSCLC were accrued into the usual care phase (Phase 1) of an NCI-funded Program Project Grant. Baseline and longitudinal (up to 52 weeks post-accrual) physical function, symptoms, and QOL were assessed in the thoracic ambulatory clinics of one NCI-designated Comprehensive Cancer Center. Outcome measures included geriatric assessments, psychological distress, symptoms, and QOL. The association between disease stage (I-II vs. III) and longitudinal changes in these domains was evaluated. RESULTS: A total of 103 patients were accrued. Stage I-II patients were significantly more likely to complete the study (p = 0.005). The stages (I-II vs. III) were equivalent at baseline on all demographic variables, clinical, and functional status. Physical function fluctuated longitudinally and was higher at 6 and 24 weeks than at baseline and 12 weeks. There was a longitudinal decrease in total number of symptoms (p < 0.001). Physical and social/family QOL fluctuated longitudinally (p < 0.001 and p = 0.016, respectively). CONCLUSIONS: Patients with early-stage NSCLC report a significant longitudinal decrease in physical QOL, and fluctuations in objective and subjective measures of physical function over time were observed regardless of disease stage category. An interdisciplinary palliative care intervention is currently being tested to decrease symptom burden and improve QOL.

Functional status and health-related quality of life among allogeneic transplant patients at hospital discharge: a comparison of sociodemographic, disease, and treatment characteristics.

PURPOSE: The purpose of this paper is to report the findings of a study of hematopoietic cell transplant patients, describing the needs of allogeneic transplant patients at the time of discharge in regard to their functional status, quality of life (QOL), and caregiver information and comparing these needs across a number of sociodemographic, disease, and treatment characteristics. The findings of this study are part of a larger mixed-methods study, representing one data time point of the larger study. METHODS: This paper will discuss the baseline data collected at the time of discharge for 282 allogeneic transplant patients, which include sociodemographic data combined with disease, treatment, functional status, and QOL data to present a comprehensive portrait of the transplant patient at discharge. RESULTS: Mean age was 48 years, males represented 52%, and 22% of the patients were Hispanic. The majority of the patients had acute leukemia (55%), were diagnosed within the last 3 years, and had matched unrelated (52%) transplants. The time from transplant to discharge averaged 30 days. Mean scores for QOL (scale = 1-10, with 10 = best QOL) included a low score of 5.7 for both psychological and social well-being, 6.3 for overall QOL, and 7.1 for both physical and spiritual well-being. Males had significantly higher QOL than females, as did non-Hispanics. Patients with Hodgkin's disease had significantly lower overall QOL scores. CONCLUSIONS: Our results highlight the physical, psychological, social, and spiritual challenges which present for patients and their caregivers at the time of hospital discharge following allogeneic transplant.

Challenges and strategies for recruitment and retention of vulnerable research participants: promoting the benefits of participation.

The purpose of this article was to describe recruitment and retention of vulnerable hematopoietic cell transplant patients participating in a longitudinal intervention study. Utilizing Swanson's theory of caring model, nurse researchers facilitated patients' visualization of how study participation could enable them to share their experience and further clinical insights.

Nutritional Risk in Cancer Patients 65 and Older Undergoing Systemic Phase I Treatment.

Malnutrition is common in cancer patients and recognized as an important component of adverse outcomes, including increased morbidity, mortality, and decreased quality of life (QOL). Quality of life is an overarching term for quality of various domains of life. It is a standard level that consists of the expectations of an individual for a good life. These expectations are guided by values, goals, and sociocultural context. It is a subjective, multidimensional concept defining a standard level for emotional, physical, material, and social well-being (Bottomley, 2012). Nutritional risk is not consistently assessed in the older adult cancer patient population. The purpose of this secondary analysis was to identify variables related to nutritional risk in the cancer patient 65 years and older receiving systemic treatments. The study described the relationship between nutritional risk and four domains of QOL (physical, social, emotional, and functional). A sample of 73 patients was accrued for this study from an NCI-funded RO1 aimed at integrating supportive care for cancer patients. The Mini Nutritional Assessment-Short Form instrument was used to assess for nutritional risk. Findings revealed the strongest correlation with nutritional risk was BMI status (r = .47, p < .0001). Multiple regression analysis demonstrated factors associated with nutritional risk included BMI, previous chemotherapy, and physical subscale of the Functional Assessment of Cancer Therapy-General QOL instrument. Descriptive data reinforced the importance of assessment and intervention to support nutritional status. Nutrition impacts all dimensions of QOL and is even more important in an aging population. Advanced practitioners can contribute greatly to advancing this area of practice.

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.

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.

Palliative Care and Phase 1 Trials: Intervention to Improve Quality of Life and Provide Education
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BACKGROUND: Patients in phase 1 clinical trials often have significant symptom burdens and quality-of-life concerns that increase as they progress along the cancer trajectory and experience drug toxicities from the clinical trial. 
. OBJECTIVES: The interdisciplinary intervention described is aimed at providing optimum palliative care to support patients with solid tumors participating in a phase 1 clinical trial.
. METHODS: The intervention includes a baseline evaluation using quantitative surveys, a comprehensive palliative care assessment by a research nurse based on patient baseline evaluation, and a goals-of-care discussion by the treating oncologist. The second component includes an interdisciplinary meeting where palliative care recommendations are made, followed by two patient education sessions.
. FINDINGS: The initial experience with the palliative care intervention suggests a need for support for this population, as well as potential benefits from integrating palliative care for patients enrolled in phase 1 clinical trials.

Long-Term Effect of an Interdisciplinary Supportive Care Intervention for Lung Cancer Survivors After Surgical Procedures.

BACKGROUND: Surgical procedures provide the best chance for cure and long-term survival in non-small cell cancer (NSCLC). Persistent symptoms after surgical procedures are common, and they can negatively affect health-related quality of life (HRQOL). The purpose of this study was to examine the long-term effect of an interdisciplinary supportive care intervention to improve HRQOL, psychological distress, and symptoms in lung cancer survivors who were treated surgically. METHODS: Patients undergoing curative intent resection for NSCLC were enrolled in a prospective sequential design whereby the control group was accrued first, followed by the intervention group. Patients in the intervention group were assessed and presented by nurses at weekly interdisciplinary care meetings before surgical procedures, and received four educational sessions (physical, psychological, social, and spiritual well-being) after surgical procedures. Appropriate symptom management, social work, rehabilitation, and spiritual support interventions were coordinated by the study nurse. In both groups, HRQOL, psychological distress, and symptom severity were assessed at baseline and at 6, 12, 24, 36, and 52 weeks with the use of surveys that included the validated Functional Assessment of Cancer Therapy-Lung (FACT-L), Lung Cancer Subscale (LCS), and Distress Thermometer. Mean survey scores were analyzed with factorial analysis of covariance at 12 months. RESULTS: A total of 71 survivors (control = 33; intervention = 38) were accrued. No difference was found in age, baseline performance status, or stage of disease between groups. Patients in the intervention group had significantly less distress (mean, 1.0 versus 4.0; range, 0 to 10; p < 0.001) and more favorable mean FACT-L scores (126.1 versus 98.7; range, 0 to 140; p < 0.001) and LCS scores (29.4 versus 23.6; range, 0 to 32; p < 0.001) at 12 months. The mean scores of all categories of questions in FACT-L (physical, social/family, emotional, and functional well-being) were considerably more favorable in the intervention group at 12 months. CONCLUSIONS: An interdisciplinary supportive care intervention improves psychological distress and HRQOL at 12 months after lung cancer surgical procedures. This study has important implications in improving HRQOL of lung cancer survivors after surgical procedures. Further study is warranted on incorporating the interdisciplinary personalized interventions used in this study into clinical practice for lung cancer survivors.

The impact of lung cancer surgery on quality of life trajectories in patients and family caregivers.

OBJECTIVES: Family caregivers (FCGs) play an important role in the quality of life (QOL) of lung cancer patients. FCGs experience significant psychological distress related to their caregiving role, but there is relatively little data about FCG QOL after cancer surgery. We sought to describe QOL trajectories for patients and their FCGs after lung cancer surgery. METHODS: This is a secondary analysis of a larger, prospective QOL study, testing the effectiveness of an interdisciplinary palliative care intervention for lung cancer patients and FCGs in a single institution. The intervention included interdisciplinary care planning and formal education sessions for both patients and FCGs. This subset analysis included patients who underwent surgery and had a matching FCG with complete QOL data (41 pairs of patients and caregivers out of 112 surgical patients). Patient QOL was assessed with the Functional Assessment of Cancer Therapy-Lung tool. FCG QOL was assessed with the FCG version of the City of Hope QOL tool. Psychological distress was assessed using the Distress Thermometer. RESULTS: Psychological distress levels were highest for patients (3.8/10) and FCGs (5.1/10) before surgery. Distress levels decreased among patients at six (2.9/10) and 12 weeks (2.2/10, p=0.001) later, but remained elevated among FCGs (4.2/10 and 4.4/10, p=0.157). Compared with usual care, patients in the intervention group reported improved physical and functional QOL outcomes at 12 weeks (p<0.01), but there was no significant benefit seen for FCGs in any domain (p>0.05). CONCLUSIONS: FCGs of lung cancer patients experience significant psychological distress. FCGs continue to have impaired QOL 3 months after surgery. The trajectory of QOL for FCGs does not mirror that of patients. Our palliative care intervention showed improved QOL outcomes for this subset of patients but was not effective for their FCGs. TRIAL REGISTRATION: NCI sponsored, trial identifier NCT00823667 https://clinicaltrials.gov/show/NCT00823667.

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.

Quality of life and symptoms following stereotactic body radiotherapy in early-stage lung cancer patients.

BACKGROUND: Stereotactic body radiotherapy (SBRT) has emerged in recent years as a clinically viable treatment option for early-stage non-small-cell lung cancer (NSCLC) patients. Comprehensive assessment of quality of life (QoL) after SBRT is relatively sparse. OBJECTIVE: To describe QoL and symptoms in a small, prospective cohort of early-stage NSCLC patients treated with SBRT. METHODS: 19 NSCLC patients who were medically unfit for surgery or chose not to undergo surgery were included in the study. All of the patients were treated with SBRT between 2009 and 2013 at a single comprehensive cancer center. Patients completed a baseline assessment of functional and cognitive status, symptoms, psychological distress, and overall QoL. Questionnaires were repeated at 6 and 12 weeks after accrual. RESULTS: There were no significant differences in all outcomes across the 3 evaluation time points. Overall QoL scores were moderate, and the lowest score was observed for the functional well-being domain. The most severe symptoms at baseline were pain, lack of energy, cough, nervousness, difficulty sleeping, shortness of breath, and worry. Severity scores for pain, lack of energy, and cough increased, whereas nervousness, difficulty sleeping, and worry decreased at the 12 week evaluation. LIMITATIONS: Small sample size and lack of sufficient diversity in the cohort. CONCLUSIONS: QoL scores remained relatively stable across time. Anxiety improved after SBRT, whereas symptoms such as generalized pain, lack of energy, and cough worsened. The findings suggest that SBRT is overall a well-tolerated treatment with no significant decrement in patient-centered outcomes.

Sexuality, lung cancer, and the older adult: an unlikely trio?

Case Study  Mrs. L. is a 60-year-old retired female teacher with stage IIIA squamous cell carcinoma of the lung, status postchemoradiation. She recently developed radiation pneumonitis, which was managed conservatively, and she did not require steroids. Mrs. L. has noted some progression of her underlying dyspnea. She is monitoring her oxygen saturation at home, and most of the time it is in the range of 94% to 96%. On one occasion only, her oxygen dropped to 88% and rapidly improved to the mid-90s. Her cough has improved for the past 4 to 6 weeks. She denies sputum production, congestion, or fever. Mrs. L. does not require a walker and uses a wheelchair only for long distances. She has occasional, slight dysphagia. A recent CT scan shows stable disease, and she is to return to the clinic in 2 months for restaging and possible further chemotherapy. Mrs. L. and her husband have been married for 33 years, and they have been very close. Until recently, they have continued to be sexually active and very intimate with each other. Since Mrs. L.'s diagnosis, and during treatment, the couple have become extremely stressed and psychologically spent. The act of sexual intercourse has ceased, yet they have attempted to remain close and maintain open communication. In addition to Mrs. L.'s increasing dyspnea, she has also suffered a great deal of fatigue and depression, along with alopecia and vaginal atrophy, due to the chemotherapy and radiation treatments. Both Mr. and Mrs. L. are very distressed over the change in their sexual lives. Mr. L. has mentioned that he now feels more like a "nursemaid" than a husband or lover. Mrs. L. has made concerted efforts to maintain intimacy with her husband, but her fatigue is profound. She has taken to sleeping in the living room, sitting up on the couch, as it relieves her dyspnea to some degree.

Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research.

BACKGROUND: Informal caregivers (ICs) for medically fragile hematopoietic cell transplantation (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient's IC. Assessment of HCT caregivers' quality of life (QOL) and health status is critical to implementation of timely intervention and support. METHODS: A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of HCT patients. These studies were summarized within the caregiver concepts of QOL, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research. RESULTS: Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on education, psychosocial support, and self-care. CONCLUSIONS: Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses the needs of ICs of HCT patients. Testing of these interventions and additional areas of research are identified. IMPLICATIONS FOR PRACTICE: Beginning descriptive evidence provides the basis for interventions for ICs of HCT patients. These interventions support caregiver QOL and role implementation, depending on individual caregivers' resources and needs. Further evaluation and clinical research are needed.

Use of preoperative hypnosis to reduce postoperative pain and anesthesia-related side effects.

The purpose of this pilot project was to test the feasibility of hypnosis as a preoperative intervention. The unique features of this study were: (a) use of a standardized nurse-delivered hypnosis protocol, (b) intervention administration immediately prior to surgery in the preoperative holding area, and (c) provision of hypnosis to breast cancer surgery patients receiving general anesthesia. A mixed-method design was used. Data collected from the intervention group and historical control group included demographics, symptom assessments, medication administration, and surgical, anesthesia, and recovery minutes. A semi-structured interview was conducted with the intervention group. A reduction in anxiety, worry, nervousness, sadness, irritability, and distress was found from baseline to postintervention while pain and nausea increased. The results support further exploration of the use of nurse-led preoperative hypnosis.