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Interdisciplinary Palliative Care Intervention in Metastatic Non–Small-Cell Lung Cancer
Abstract
Challenges and barriers continue to hinder the integration of palliative care models into comprehensive, ambulatory oncology care. This article aims to describe how symptoms, distress, and quality of life (QOL) data from the usual care phase of a National Cancer Institute-supported Program Project informed the development of an interdisciplinary, tailored palliative care intervention for patients with metastatic non-small-cell lung cancer (NSCLC).
Patients receiving usual care for metastatic NSCLC were recruited into this prospective longitudinal study over a 1-year period. A total of 130 patients with stage IV NSCLC were accrued, and 114 patients had evaluable data. Research nurses assisted patients in completing the clinical section of the data forms, and patients completed surveys and self-reports at baseline and 6, 12, and 24 weeks.
Patients ranged in age from 40 to 84 years, and 61% were Caucasian non-Hispanic. Sixty-six former (N = 59) and current smokers had an average of 38 pack-year history of smoking. The Karnofsky Performance Status, Instrumental Activities of Daily Living, and Cognitive scores deteriorated significantly (P = .001, .009, and .042, respectively). Social Activity was stable, whereas Social Support increased significantly. Overall symptom distress score and Total symptom score both significantly increased at 24 weeks (P = .003 and .017, respectively). Physical Well-Being decreased significantly (P = .036), whereas the Functional Assessment of Cancer Therapy-Lung, Functional Assessment of Chronic Illness Therapy-Spirituality Subscale, and Distress scores remained statistically stable over time.
Patients with metastatic NSCLC continue to experience high symptom burden and diminished physical well-being over time while receiving cancer treatments. An interdisciplinary palliative care intervention is currently being tested to improve symptom burden and overall QOL.
... Since the release of the reports by the IOM and published advocacy statements, it is encouraging to state that progress has been made in the integration of PC NCP, 2013;Koczywas et al., 2013). Major hospice and key organizations are working together to integrate PC when caring for patients with cancer, which is recommended by the IOM Temel et al., 2010;Koczywas et al., 2013;NCP, 2013). ...
... Since the release of the reports by the IOM and published advocacy statements, it is encouraging to state that progress has been made in the integration of PC NCP, 2013;Koczywas et al., 2013). Major hospice and key organizations are working together to integrate PC when caring for patients with cancer, which is recommended by the IOM Temel et al., 2010;Koczywas et al., 2013;NCP, 2013). ...
... The report urged the entire health-care industry (including all stakeholders) to reevaluate their roles and responsibilities in cancer care and work together to develop a higher-quality cancer care delivery system nationally (IOM, 2013). The report underscored the importance of developing, testing, and disseminating disease-specific models of PC (IOM, 2013), which can be successfully integrated into organizational systems to address the escalating challenges of delivering high-quality care (IOM, 2013;Koczywas et al., 2013). Development of disease-specific PC models may provide patients and families with support mechanisms more relevant to their needs (Gaertner, Wolf, Hallek, Glossman, & Voltz, 2011;IOM, 2013). ...
Over a decade ago, the Institute of Medicine (IOM) presented Ensuring Quality Cancer Care in the United States, with recommendations for change (IOM, 1999). However, barriers to integrating palliative care (PC) to achieve high-quality care in cancer still remain. As novel therapeutic agents evolve, patients are living longer, and advanced cancer is now considered a chronic illness. In addition to complex symptom concerns, patients and family caregivers are burdened with psychological, social, and spiritual distress. Furthermore, data show that PC continues to be underutilized and inaccessible, and current innovative models of integrating PC into standard cancer care lack uniformity. The aim of this article is to address the existing barriers in implementing PC into our cancer care delivery system and discuss how the oncology advanced practice nurse plays an essential role in providing high-quality cancer care. We also review the IOM recommendations; highlight the work done by the National Consensus Project in promoting quality PC; and discuss a National Cancer Institute-funded program project currently conducted at a National Comprehensive Cancer Center, "Palliative Care for Quality of Life and Symptoms Concerns in Lung Cancer," which serves as a model to promote high-quality care for patients and their families.
... [1][2][3] This article examines the role of pulmonary rehabilitation as an additional component of high quality palliative care for the lung cancer patient, based on experience from a five-year, NCI-(National Cancer Institute) sponsored Program Project. 4 The NCI-sponsored Program Project tested the effectiveness of interdisciplinary palliative care for patients with early through late stage lung cancer and their family caregivers. 4 The team included oncologists, surgeons, advanced practice nurses, a social worker, dietitian, chaplain, physical therapist, and pulmonary rehabilitation physician. ...
... [1][2][3] This article examines the role of pulmonary rehabilitation as an additional component of high quality palliative care for the lung cancer patient, based on experience from a five-year, NCI-(National Cancer Institute) sponsored Program Project. 4 The NCI-sponsored Program Project tested the effectiveness of interdisciplinary palliative care for patients with early through late stage lung cancer and their family caregivers. 4 The team included oncologists, surgeons, advanced practice nurses, a social worker, dietitian, chaplain, physical therapist, and pulmonary rehabilitation physician. Patients who were noted to have dyspnea on low-level exertion, experiencing fatigue, or were undergoing lung cancer surgery were referred for pulmonary rehabilitation. ...
Pulmonary rehabilitation, as a quality of life intervention, has a role to play in palliative care for lung cancer patients. Combining the art and skills of clinical care, physiological, and behavioral tools, pulmonary rehabilitation can serve to rebuild the functional capacity of patients limited by breathlessness and deconditioning. Exercise programs are the primary tool used to restore and rebuild the patient's endurance by challenging the entire pathway of oxygen transport and improving gas exchange. Other tools of pulmonary rehabilitation include breathing retraining, self-management skills, airway clearance techniques, bronchodilitation, smoking cessation and oxygen therapy. Pulmonary rehabilitation is now becoming a part of supportive care for patients undergoing chemotherapy and radiation therapy. The ability to be more active without suffering the consequences of dyspnea on exertion boosts the patient's self-efficacy and allows for an improved quality of life, so that lung cancer patients can participate in their family lives during this therapeutic challenge.
... When this information was reported, data were typically collected directly from participants (57.3%, n=75; e.g., (59,65,86,110,136)). When chart reviews were used to measure tobacco use (14.5%, n=19) (9,31,33,43,48,50,66,68,79,91,93,94,98,108,118,142,146,147,150), it was often unclear whether the data arose from patient report and/or clinician ratings. Biochemical analysis was occasionally used to validate self-report data (14.5%, ...
... Ns denote number of studies in the analysis for Full Sample/Current Smokers at Cancer Diagnosis. Full Sample: Before Treatment includes data from (4, 10, 28, 32, 43, 45, 57, 59, 63-65, 68, 73, 74, 84, 99, 101, 102, 106, 108, 109, 111, 114, 127, 132, 134, 143, 148, 151, 154); During Treatment includes data from (34, 40, 75, 104, 110, 118, 121, 133, 145-147, 152) (33, 37, 38, 50,78, 107,124,139,150); After Treatment includes data from(29, 30, 49, 53, 58-60, 67, 69, 70, 79, 85-87, 89, 92, 97, 98, 100, 103, 105, 119, 122, 128, 138, 141); and Mixed includes data from(5, 41, 42, 46, 47, 52, 55, 61, 62,73,77,80,83,90,91,93,94,96, 115,126,130,131,133,140,144,153). Current Smokers at Cancer Diagnosis: Before Treatment includes data from(4, 65,82,84,143); During Treatment includes data from(34, 39, 40, 110, 117,142,149); After Treatment includes data from (44, ...
Tobacco use after cancer diagnosis is associated with adverse cancer outcomes, yet reliable prevalence estimates for this behavior are lacking. We conducted a systematic literature review of the prevalence of current tobacco use among individuals with a history of lung or head/neck cancer (CRD #42012002625). An extensive search of electronic databases (MEDLINE, EMBASE, Cochrane Library, CINAHL, PsycINFO, Web of Science) identified 7,777 potentially relevant papers published between 1980 and 2014, and 131 of these yielded pertinent information. Aggregating results across heterogeneous study designs and diverse patient samples, the overall mean prevalence rate of current tobacco use (mostly cigarette smoking) was 33.0% (median=31.0%). Among current tobacco users at cancer diagnosis, the mean prevalence rate of current tobacco use (mostly cigarette smoking) was 53.8% (median=50.3%). In many cases, an operational definition of "current" tobacco use was absent, and biochemical verification of self-reported smoking status was infrequent. These and other observed methodological limitations in the assessment and reporting of cancer patients' tobacco use underscore the necessity of uniform tobacco use assessment in future clinical research and cancer care.
Copyright © 2015, American Association for Cancer Research.
... The patient scenario presented in this article is a composite derived from a National Cancer Institute (NCI)-funded Program Project (PO1) conducted at a National Comprehensive Cancer Center-designated urban hospital. The Palliative Care for Quality of Life and Symptom Concerns in Lung Cancer project focuses on palliative care (PC), quality of life (QOL), and symptom management across the trajectory of lung cancer and is described in more detail elsewhere (Koczywas, Cristea, Thomas, et al, 2013). This program project tests usual care versus a palliative care educational intervention delivered by an advanced practice nurse (APN). ...
... Preliminary findings from this study indicated that psychosocial-spiritual concerns were the most troubling to the patients and FCGs. These findings underscore the importance of the early integration of social work for this vulnerable patient population (Koczywas, Cristea, Thomas, et al, 2013). The National Association of Social Workers' Standards for Social Work Practice in Palliative Care (NASW, 2004) calls for the early inclusion and integration of social work in the delivery of palliative care to address these complex and inter-related concerns of patients and their families and outlines key recommendations to guide social work practice in this field. ...
Abstract Lung cancer patients and their family caregivers face a wide range of potentially distressing symptoms across the four domains of quality of life. A multi-dimensional approach to addressing these complex concerns with early integration of palliative care has proven beneficial. This article highlights opportunities to integrate social work using a comprehensive quality of life model and a composite patient scenario from a large lung cancer educational intervention National Cancer Institute-funded program project grant.
... Quality of life (QOL) is an important issue for the cancer patient and has implications for quality of survivorship. 1 Lung cancer is associated with higher symptom burden than other cancers, 2 and the research linking symptom burden with poorer QOL is well documented. [2][3][4] . Unfortunately, the psychological and emotional impact of lung cancer has been understudied. ...
Objectives:
Lung cancer is associated with a greater symptom burden than other cancers, yet little is known about the prevalence of emotional problems and how emotional problems may be related to the physical symptom burden and quality of life in newly diagnosed patients with lung cancer. This study aimed to identify the patient and disease characteristics of patients with lung cancer experiencing emotional problems and to examine how emotional problems relate to quality of life and symptom burden.
Patients and methods:
A total of 2205 newly diagnosed patients with lung cancer completed questionnaires on emotional problems, quality of life, and symptom burden.
Results:
Emotional problems at diagnosis were associated with younger age, female gender, current cigarette smoking, current employment, advanced lung cancer disease, surgical or chemotherapy treatment, and a lower Eastern Cooperative Oncology Group performance score. Additionally, strong associations were found between greater severity of emotional problems, lower quality of life, and greater symptom burden.
Conclusion:
Certain characteristics place patients with lung cancer at greater risk for emotional problems, which are associated with a reduced quality of life and greater symptom burden. Assessment of the presence of emotional problems at the time of lung cancer diagnosis provides the opportunity to offer tailored strategies for managing negative mood, and for improving the quality of life and symptom burden management of patients with lung cancer.
... However, the need for greater understanding of late-stage lung cancer patients' quality of life (QoL) at the end of life (EoL) still exists, as many studies have been conducted in the context of clinical trials that include patients diagnosed with other types of cancer (Pearman, 2007) or that employ health-related QoL (HRQoL) as an implicit proxy for patient concerns during terminal illness (Hirsch, 2013). Despite the high distress (compared to most other cancers) (Koczywas et al., 2013;Zabora et al., 2001) and the likelihood of receiving cancer-directed therapies within weeks or months of dying (Earle et al., 2008), little is known about the experience of living with advanced metastatic lung cancer to support tailored palliative care interventions. The present article contributes to our knowledge about quality of life at the end of life (QoLEoL) among persons with late-stage lung cancer by examining psychosocial and existential concerns using the Quality of Life at the End of Life (QUAL-E) "preparation for end-of-life" and "life completion" subscales (Steinhauser et al., 2004). ...
Objective:
Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions.
Method:
We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the "end-of-life preparation" and "life completion" subscales of the Quality of Life at the End of Life (QUAL-E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL.
Results:
Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL.
Significance of results:
Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL-E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.
... 3 Patients' symptoms and activity levels worsen with time and treatment. 4,5 Many clinicians associate symptom progression in chronic lung disease with the dyspnea spiral, wherein dyspnea develops, activity is avoided, functional capacity is lost, and dyspnea worsens. ...
Background and objective:
Increasing physical activity (PA) is safe and beneficial in lung cancer (LC) patients. Advanced-stage LC patients are under-studied and have worse symptoms and quality of life (QoL). We evaluated the feasibility of monitoring step count in advanced LC as well as potential correlations between PA and QoL.
Methods:
This is a prospective, observational study of 39 consecutive patients with advanced-stage LC. Daily step count over 1 week (via Fitbit Zip), QoL, dyspnea, and depression scores were collected. Spearman rank testing was used to assess correlations. Correlation coefficients (ρ) >0.3 or <-0.3 (more and less correlated, respectively) were considered potentially clinically significant.
Results:
Most (83%) of the patients were interested in participating, and 67% of those enrolled were adherent with the device. Of those using the device (n = 30), the average daily step count was 4877 (range = 504-12 118) steps/d. Higher average daily step count correlated with higher QoL (ρ = 0.46), physical (ρ = 0.61), role (ρ = 0.48), and emotional functioning (ρ = 0.40) scores as well as lower depression (ρ = -0.40), dyspnea (ρ = -0.54), and pain (ρ = -0.37) scores.
Conclusion:
Remote PA monitoring (Fitbit Zip) is feasible in advanced-stage LC patients. Interest in participating in this PA study was high with comparable adherence to other PA studies. In those utilizing the device, higher step count correlates with higher QoL as well as lower dyspnea, pain, and depression scores. PA monitoring with wearable devices in advanced-stage LC deserves further study.
... Symptom management in lung cancer patients is complex, and uncontrolled symptoms have been associated with increased emotional distress, decreased health-related quality of life, and even decreased survival [5][6][7][8][9]. The majority of lung cancer patients have high levels of disease-related symptomatology, as well as psychological distress at presentation [10][11][12][13][14]. Optimal management requires attention to multiple symptoms. ...
Background
Management of uncontrolled symptoms is an important component of quality cancer care. Clinical guidelines are available for optimal symptom management, but are not often integrated into the front lines of care. The use of clinical decision support (CDS) at the point-of-care is an innovative way to incorporate guideline-based symptom management into routine cancer care.
Objective
The objective of this study was to develop and evaluate a rule-based CDS system to enable management of multiple symptoms in lung cancer patients at the point-of-care.
Methods
This study was conducted in three phases involving a formative evaluation, a system evaluation, and a contextual evaluation of clinical use. In Phase 1, we conducted iterative usability testing of user interface prototypes with patients and health care providers (HCPs) in two thoracic oncology clinics. In Phase 2, we programmed complex algorithms derived from clinical practice guidelines into a rules engine that used Web services to communicate with the end-user application. Unit testing of algorithms was conducted using a stack-traversal tree-spanning methodology to identify all possible permutations of pathways through each algorithm, to validate accuracy. In Phase 3, we evaluated clinical use of the system among patients and HCPs in the two clinics via observations, structured interviews, and questionnaires.
Results
In Phase 1, 13 patients and 5 HCPs engaged in two rounds of formative testing, and suggested improvements leading to revisions until overall usability scores met a priori benchmarks. In Phase 2, symptom management algorithms contained between 29 and 1425 decision nodes, resulting in 19 to 3194 unique pathways per algorithm. Unit testing required 240 person-hours, and integration testing required 40 person-hours. In Phase 3, both patients and HCPs found the system usable and acceptable, and offered suggestions for improvements.
Conclusions
A rule-based CDS system for complex symptom management was systematically developed and tested. The complexity of the algorithms required extensive development and innovative testing. The Web service-based approach allowed remote access to CDS knowledge, and could enable scaling and sharing of this knowledge to accelerate availability, and reduce duplication of effort. Patients and HCPs found the system to be usable and useful.
... Dyspnea correlates with coping capacity, performance status, and other symptoms such as anxiety, depression, fatigue, and cough [60]. Further, dyspnea has been shown to account for over 25 % of urgent care visits in a study of 114 patients with NSCLC, second only to pain [61]. ...
Opinion statement
Palliative care integrated into standard medical oncologic care will transform the way we approach and practice oncologic care. Integration of appropriate components of palliative care into oncologic treatment using a pathway-based approach will be described in this review. Care pathways build on disease status (early, locally advanced, advanced) as well as patient and family needs. This allows for an individualized approach to care and is the best means for proactive screening, assessment, and intervention, to ensure that all palliative care needs are met throughout the continuum of care. Components of palliative care that will be discussed include assessment of physical symptoms, psychosocial distress, and spiritual distress. Specific components of these should be integrated based on disease trajectory, as well as clinical assessment. Palliative care should also include family and caregiver education, training, and support, from diagnosis through survivorship and end of life. Effective integration of palliative care interventions have the potential to impact quality of life and longevity for patients, as well as improve caregiver outcomes.
... The overall 5-year survival rate for stage IIIB/IV NSCLC is 1–5% [2] , and approximately 70% of patients are diagnosed at an advanced stage of disease when curative treatments are no longer options for patients [3,4]. Patients with NSCLC experience problematic symptoms, which impact quality of life (QoL) and functional status, both before and during the course of their treatment [5,6] and typically disease symptoms worsen over time [7]. Studies have reported that patients with NSCLC commonly suffer from dyspnea, cough, fatigue, anorexia, and pain8910 , which can affect the physical and functional aspects of a patient's QoL. ...
... The patient education notebook was divided into 4 sections based on the QOL model 24 : physical, psychological, social, and spiritual well-being domains. Within each section, a list of symptoms or topics was provided, from which the patient chose 3. The lists were based on the authors' previous research 21,[25][26][27][28] and the National Comprehensive Cancer Network guidelines for NSCLC. 29 At the desired date, time, and location, the nurse either called or saw the patient in the clinic for the educational session. ...
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 an National Cancer Institute-funded Program Project grant, this article reports on the patient and family caregiver education component of a nurse-lead, tailored, palliative care intervention for patients with early-stage (I-III, n = 130) and late-stage (IV, n = 142) 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 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 article focuses on the process of the tailored educational intervention.
Context:
Metastatic lung cancer (LC) patients and their spousal caregivers are at high risk of psychological symptoms. Mindfulness may improve psychological symptoms via spiritual well-being (SW); yet, this mediation model has not been examined in a dyadic context.
Objectives:
We examined the mediating role of two dimensions of SW (meaning/peace, faith) in the mindfulness-symptoms link in stage IV LC patients and their spousal caregivers.
Methods:
We examined the actor-partner interdependence model of mediation (APIMeM) using multivariate multilevel modeling with 78 couples. Four APIMeM analyses were conducted to examine: 1 predictor (mindfulness) × 2 mediators (meaning/peace, faith) × 2 psychological symptoms (depressive symptoms, cancer distress). We also tested four alternative models in which mindfulness mediates the associations between SW and psychological symptoms.
Results:
The alternative model (SW→ Mindfulness→ Psychological symptoms) was preferred than the original model (Mindfulness→ SW→ Psychological Symptoms). For patients, meaning/peace was directly associated with their own psychological symptoms, while faith was only indirectly associated with their own psychological symptoms via mindfulness. For spouses, meaning/peace was both directly and indirectly associated with their own psychological symptoms, while faith was only directly associated with their own depressive symptoms (but not cancer distress). Moreover, spouses' faith was indirectly associated with patients' psychological symptoms through patients' mindfulness.
Conclusions:
SW are associated with patients and spouses' psychological symptoms both directly and indirectly through mindfulness. Thus, interventions that target SW, particularly meaning and peace, along with mindfulness may be beneficial to the psychological management of patients facing a terminal disease and their spousal caregivers.
Purpose:
Palliative care is constructed by various kinds of professionals. This study aimed to identify the challenges that dental hygienists (DHs) encountered when working with other professionals in a multidisciplinary team approach in palliative care for advanced cancer patients.
Methods:
We conducted the following two studies: (1) a questionnaire-based survey for DHs who belong to Japanese Society for Oral Care (JSOC) on oral care in palliative care settings (n = 1,290), and (2) surveys on education for DHs in universities. Items in this study included the following: 1) a cross-sectional analysis of the curriculum on palliative care at 10 universities and 2) a questionnaire-based survey on palliative care education at 1 of the 10 universities (n = 75).
Results:
(1) Seventy-three percent had experience in oral care in palliative care settings. The number of DHs with ≥20 years' experience was significantly higher than those with <10 years' experience (76% vs 66%, p = 0.042). Further, 92% received no formal palliative care education, and 94% perceived a lack of knowledge on palliative care. These data did not differ based on the years of experience. (2) (a) There was no specific curriculum on the subject of palliative care in 10 universities. Lectures on palliative care were provided at 3 universities. (b) Fifty-five percent of students attended lectures on palliative care. However, 88% of them experienced anxiety, and 78% perceived few classes on palliative care.
Conclusions:
For DHs, to positively contribute to multidisciplinary palliative care team approach, it is important to establish pregraduate and postgraduate education systems.
The objective of postoperative pain management after thoracotomy is the prevention of postopera-tive complications, the reduction of the length of hospital stay, the increase of the patient’s satisfac-tion and finally the resumption of the daily living’s normal activities. Thoracic surgery affects postoperative respiratory function, along with a high risk of developing postoperative pulmonary complications. Pain is a subjective experience. Postoperative pain man-agement in thoracic surgery patients should be individually applied, based on a well-organized health care system that emphasizes consistent nursing education regarding proper pain management techniques, with an effective communication between the patient and members of the existing mul-tidisciplinary team, especially the nursing staff.
Palliative care (PC) focuses on improving the quality of life and minimizing suffering in patients with chronic, symptomatic, and life-threatening disease. Because of severe and progressive symptoms, coexisting lung disease, anxiety, and depression, lung cancer (LC) patients derive robust benefit from PC. Multiple studies have shown that PC in LC improves quality of life, survival, mental health outcomes, and caregiver satisfaction. Despite proven benefit, PC is very often viewed as a therapy of last resort, and opportunities to reduce suffering are missed. To be most effective, PC should be provided by generalists and specialists, implemented early, involve multidisciplinary teams, and be malleable to the needs of patients and caregivers. This paper reviews the literature to improve the understanding and dissemination of best palliative practices in LC care.
Background
Many patients live with serious chronic or terminal illnesses. Multicomponent palliative care interventions have been increasingly utilized in patient care; however, it is unclear what is being implemented and who is delivering these interventions.
Objectives
To (1) describe the delivery of multicomponent palliative care interventions, (2) characterize the disciplines delivering care, (3) identify the components being implemented, and (4) analyze whether the number of disciplines or components being implemented are associated with positive outcomes.
Design
Systematic review.
Study Selection
English-language articles analyzing multicomponent palliative care interventions.
Outcomes Measured
Delivery of palliative interventions by discipline, components of palliative care implemented, and number of positive outcomes (eg, pain, quality of life).
Results
Our search strategy yielded 71 articles, which detailed 64 unique multicomponent palliative care interventions. Nurses (n = 64, 88%) were most often involved in delivering care, followed by physicians (n = 43, 67%), social workers (n = 33, 52%), and chaplains (n = 19, 30%). The most common palliative care components patients received were symptom management (n = 56, 88%), psychological support/counseling (n = 52, 81%), and disease education (n = 48, 75%). Statistical analysis did not uncover an association between number of disciplines or components and positive outcomes.
Conclusions
While there has been growth in multicomponent palliative care interventions over the past 3 decades, important aspects require additional study such as better inclusion of key groups (eg, chronic obstructive pulmonary disease, end-stage renal disease, minorities, older adults); incorporating core components of palliative care (eg, interdisciplinary team, integrating caregivers, providing spiritual support); and developing ways to evaluate the effectiveness of interventions that can be readily replicated and disseminated.
Lung cancer patients are at high risk of suffering due to severe and refractory symptoms, concomitant respiratory comorbidity, frequent disease progression, and treatment that can worsen and compromise quality of life. Palliative care (PC) has shown multiple benefits to cancer patients such as better quality of life, higher patient and family satisfaction, improved disease understanding, less symptom burden, fewer depressive symptoms, less aggressive end of life care, and even improved survival with early implementation. For these reasons, multiple societies have recognized PC as an essential component of lung cancer care, and early PC is recommended for patients with metastatic disease or refractory symptoms. Unfortunately, utilization of PC is both low and often near the end of life, increasing risk for suffering. Misconceptions about PC often underlie delayed referral to PC. This review summarizes the literature for utilization of PC in lung cancer and focuses on patient benefits, misconceptions, barriers, and implementation.
Lung cancer is recognized to carry a high symptom burden with associated lowered quality of life as compared with other cancers. Research has shown that symptom severity can be a prognostic indicator of poorer clinical outcomes and survival post treatment. The purpose of this paper is to review current literature relative to symptom burden associated with diagnosis, medical and/or surgical intervention, assessment and management updates, and emerging initiatives that promote positive outcomes based on updated evidence. Discussion relative to interdisciplinary coordination of supportive services and palliative care initiation is provided.
Lung cancer and breast cancer are diseases with fundamentally different clinical presentation, symptom burden, treatment options, life expectancy, and palliative needs. Most patients with lung cancer present with advanced, symptomatic disease. The great majority of these patients cannot be cured, and they have limited treatment options. Except for a few patients with molecular targets for drugs, they have to rely on chemotherapy and radiotherapy, which only marginally improve survival and are primarily used to ameliorate symptoms and delay disease progression. Patients should be offered palliative care as soon as the cancer is considered incurable. If comprehensive palliative care is put into effect this early, it not only improves the patients' well-being but may prolong survival. In contrast, most women with breast cancer present with a localized, curable disease. If they develop metastatic disease, they cannot be cured, just like patients with lung cancer, but they face many more treatment options.
Considerable evidence is now available on the value of palliative care for lung cancer patients in all stages and at all times during the course of the disease. However, pneumologists and their institutions seem to be widely in arrears with the implementation of palliative care concepts and the development of integrated structures.
This review focuses on the available evidence and experience of various frequently unmet needs of lung cancer patients, especially psychological, social, spiritual and cultural ones. A PubMed search for evidence on these aspects of palliative care as well as on barriers to the implementation, on outcome parameters and effectiveness, and on structure and process quality was performed with a special focus on lung cancer patients.
As a consequence, this review particularly draws pneumologists’ attention to improving their skills in communication with the patients, their relatives and among themselves, and to establish team structures with more far-reaching competences and continuity than existing multilateral cooperations and conferences can provide. Ideally, any process of structural and procedural improvement should be accompanied by scientific evaluation and measures for quality optimisation.
Context:
Distressing symptoms interfere with the quality of life in patients with lung cancer. Algorithm-based clinical decision support (CDS) to improve evidence-based management of isolated symptoms seems promising, but no reports yet address multiple symptoms.
Objectives:
This study examined the feasibility of CDS for a Symptom Assessment and Management Intervention targeting common symptoms in patients with lung cancer (SAMI-L) in ambulatory oncology. The study objectives were to evaluate completion and delivery rates of the SAMI-L report and clinician adherence to the algorithm-based recommendations.
Methods:
Patients completed a web-based symptom assessment and SAMI-L created tailored recommendations for symptom management. Completion of assessments and delivery of reports were recorded. Medical record review assessed clinician adherence to recommendations. Feasibility was defined as 75% or higher report completion and delivery rates and 80% or higher clinician adherence to recommendations. Descriptive statistics and generalized estimating equations were used for data analyses.
Results:
Symptom assessment completion was 84% (95% CI=81-87%). Delivery of completed reports was 90% (95% CI=86-93%). Depression (36%), pain (30%), and fatigue (18%) occurred most frequently, followed by anxiety (11%) and dyspnea (6%). On average, overall recommendation adherence was 57% (95% CI=52-62%) and was not dependent on the number of recommendations (P=0.45). Adherence was higher for anxiety (66%; 95% CI=55-77%), depression (64%; 95% CI=56-71%), pain (62%; 95% CI=52-72%), and dyspnea (51%; 95% CI=38-64%) than for fatigue (38%; 95% CI=28-47%).
Conclusion:
The CDS systems, such as SAMI-L, have the potential to fill a gap in promoting evidence-based care.
We are honored to be a part of this edition of Journal of Oncology Practice focused on palliative care. Many thoughtful authors have contributed their insights and research observations to bring you a snapshot of modern palliative care and how it intersects with oncology.
Purpose:
An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer.
Clinical context:
Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available.
Recent data:
Seven published RCTs form the basis of this PCO.
Provisional clinical opinion:
Based on strong evidence from a phase III RCT, patients with metastatic non-small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care-when combined with standard cancer care or as the main focus of care-leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research.
Note:
ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.
To determine the symptom experience and a sentinel symptom and to describe the relationship of participant characteristics with symptom clusters.
Prospective, correlational study.
Clinical sites in five U.S. states.
196 women six months to five years after non-small cell lung cancer diagnosis.
Symptoms were measured during the past day and past four weeks. Symptom clusters were described using a novel dummy coding approach.
Symptom occurrence and severity, demographic and clinical characteristics, health status factors, and meaning of illness.
About 98% of women experienced three or more symptoms in the past day. The most common symptoms reported by more than 80% of the women were fatigue, shortness of breath, anorexia, cough, and pain, with fatigue and shortness of breath rated as most severe. Sleep problems, concentration problems, and weight loss also were reported during the past four weeks. A five-symptom cluster including fatigue, shortness of breath, cough, pain, and anorexia was reported by 64% of women. Pain was identified as a sentinel symptom for that cluster.
Most women experienced at least three symptoms in the past day, and a five-symptom cluster occurred frequently and continued post-treatment.
Women who participated in the study were, on average, two years postdiagnosis, but most experienced three or more symptoms well past treatment; therefore, vigilant ongoing clinical assessment of these women is essential. A co-occurring sentinel symptom used as a clinical indicator for the presence of a symptom cluster may be useful for clinical assessment.
We compared risk factors for high disease- and treatment-related symptom burden over 15 weeks of therapy in medically underserved patients with advanced non-small-cell lung cancer and in patients treated at a tertiary cancer center.
We monitored symptom severity weekly during chemotherapy. Patients were recruited from a tertiary cancer center (n=101) and three public hospitals treating the medically underserved (n=80). We used a composite symptom-severity score and group-based trajectory analysis to form two groups: one with consistently more severe symptoms and another with less severe symptoms. We examined predictors of group membership.
Seventy percent of the sample (n=126) reported low symptom-severity levels that decreased during therapy; 30% (n=55) had consistently severe symptoms throughout the study. In multivariate analysis, patients with good performance status being treated in public hospitals were significantly more likely than patients treated at the tertiary cancer center to be in the high-symptom group (odds ratio, 5.6; 95% CI, 2.1 to 14.6; P = .001) and to report significantly higher symptom interference (P = .001). Other univariate predictors of high-symptom group membership included variables associated with being medically underserved (eg, having less education, being single, and being nonwhite). No group differences by ethnicity were observed in the public hospitals. Medically underserved patients were less likely to receive adequate pain management.
Patients with advanced lung cancer and good performance status treated at public hospitals were more likely than those treated at a tertiary cancer center to experience substantial symptoms during chemotherapy.
Aggregates of concurrent symptoms, known as symptom clusters (SxCls), are reported to have prognostic capabilities beyond that of single symptom alone. A SxCl of fatigue, dyspnea, and cough has been delineated in a number of lung cancer cohorts.
The objective of this study was to characterize this SxCl's predictive value for important clinical outcomes relative to that of its component symptoms.
Analysis of an eight-year prospective cohort study that assessed 2405 patients with LC for self-reported symptom burden, employment status, and physical activity with the Baecke questionnaire, and overall quality of life (QoL) was undertaken using nested Cox and generalized linear multilevel mixed models. Models were adjusted for longitudinally assessed demographics, cancer progression and tobacco use, and cancer progression.
The SxCl, as well as its individual symptoms and symptom pairs, were all negatively associated with survival in Cox models of Years 1-3 after diagnosis. Only in Year 3 did the SxCl prognosticate survival (and then marginally) better than single symptoms or symptom pairs; fatigue was strongly associated (P≤0.0005) with survival at all time points. The SxCl was not predictive of participants' employment status, physical activity, or QoL, whereas the presence of fatigue, dyspnea, or their combination was strongly associated with these outcomes.
Fatigue and dyspnea are strongly associated with poor clinical outcomes in LC survivors; however, a SxCl that includes fatigue, dyspnea, and cough as part as its components does not appear to significantly improve their predictive capability.
We explored covariates of the quality of life (QOL) in non-small-cell lung cancer (NSCLC) patients and made a comparison with healthy controls.
We assessed the QOL of 220 consecutive NSCLC patients at a university hospital. The QOL data were measured by the brief version of the World Health Organization's Quality of Life and by utility using the standard gamble method. We selected demographically matched healthy controls from the 2001 National Health Interview Survey for comparison. Multiple linear regression models were constructed to explore significant factors of QOL after controlling for covariates.
Patients with more advanced stages of NSCLC had poorer scores than did the healthy controls in the physical and psychological domains. Patients with disease duration of longer than 1 year tended to report higher physical and environment QOL than did those with NSCLC diagnosed for less than 1 year. Insight into one's own illness was associated with a higher utility, better social support, and improved financial resources.
QOL was significantly associated with staging and duration of NSCLC. Disease insight appears to be a positive factor for operable NSCLC patients of the Taiwanese culture, which implies that clinicians should respect patient autonomy in diagnosis disclosure.
Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease.
We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records.
Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02).
Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival. (Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)
Purpose
Standardized questionnaires for patient-reported outcomes are generally composed of specified predetermined items, although other areas may also cause patients distress. We therefore studied reports of what was most distressing for 343 patients with inoperable lung cancer (LC) at six time points during the first year postdiagnosis and how these concerns were assessed by three quality-of-life and symptom questionnaires.
Patients and Methods
Qualitative analysis of patients' responses to the question “What do you find most distressing at present?” generated 20 categories, with 17 under the dimensions of “bodily distress,” “life situation with LC,” and “iatrogenic distress.” Descriptive and inferential statistical analyses were conducted.
Results
The majority of statements reported as most distressing related to somatic and psychosocial problems, with 26% of patients reporting an overarching form of distress instead of specific problems at some time point. Twenty-seven percent reported some facet of their contact with the health care system as causing them most distress. While 55% to 59% of concerns reported as most distressing were clearly assessed by the European Organisation for Research and Treatment for Cancer Quality of Life Questionnaire Core-30 and Lung Cancer Module instruments, the Memorial Symptom Assessment Scale, and the modified Distress Screening Tool, iatrogenic distress is not specifically targeted by any of the three instruments examined.
Conclusion
Using this approach, several distressing issues were found to be commonly reported by this patient group but were not assessed by standardized questionnaires. This highlights the need to carefully consider choice of instrument in relation to study objectives and characteristics of the sample investigated and to consider complementary means of assessment in clinical practice.
Patients with lung cancer frequently suffer psychological distress and guidelines in the United Kingdom recommend screening of all cancer patients for this problem. The audit investigated use of the Distress Thermometer in terms of staff adherence to locally developed guidelines, patient willingness to use the tool, its impact on referral rates to clinical psychology services and concordance between the tool and the clinical assessment.
Use of the Distress Thermometer was audited over a 3-month period in one lung cancer outpatient clinic. Referrals to clinical psychology services in response to clearly delineated referral indicators were assessed. Patient-reported outcomes were compared with practitioner assessment of need during clinical consultations to see whether the tool was measuring distress effectively.
Thirty three of 34 patients used the Distress Thermometer during the audit period. Ten reported distress levels above 4 in the emotional or family problems domains. On ten occasions, the clinical interview identified problems not elicited by the Distress Thermometer. Guidelines were adhered to by staff, and patients were offered information about local support services and referral to clinical psychology services where indicated. Whilst all patients were happy to receive written information about further sources of support, none wanted to be referred to psychological services at that time.
The Distress Thermometer is acceptable to patients with lung cancer in outpatient settings but it did not increase referrals for psychological support. Staff found it to be a useful tool in opening up communication about patient issues although it should not replace a comprehensive clinical interview.
In 1998, the American Society of Clinical Oncology (ASCO) published a special article regarding palliative care and companion recommendations. Herein we summarize the major accomplishments of ASCO regarding palliative cancer and highlight current needs and make recommendations to realize the Society's vision of comprehensive cancer care by 2020.
ASCO convened a task force of palliative care experts to assess the state of palliative cancer care in the Society's programs. We reviewed accomplishments, assessed current needs, and developed a definition of palliative cancer. Senior ASCO members and the Board of Directors reviewed and endorsed this article for submission to Journal of Clinical Oncology.
Palliative cancer care is the integration into cancer care of therapies that address the multiple issues that cause suffering for patients and their families and impact their life quality. Effective provision of palliative cancer care requires an interdisciplinary team that can provide care in all patient settings, including outpatient clinics, acute and long-term care facilities, and private homes. Changes in current policy, drug availability, and education are necessary for the integration of palliative care throughout the experience of cancer, for the achievement of quality improvement initiatives, and for effective palliative cancer care research.
The need for palliative cancer care is greater than ever notwithstanding the strides made over the last decade. Further efforts are needed to realize the integration of palliative care in the model and vision of comprehensive cancer care by 2020.
The goal of this study was to characterize the prevalence and intensity of supportive care needs and interest in specific supportive care services among individuals with lung cancer.
Participants (n=109) were recruited from two medical centers in Southern California to complete questionnaires on physical and psychological functioning following diagnosis of lung cancer.
Participants reported the greatest need in the physical and daily living domain, followed by psychological needs, health system and informational needs, and patient care support needs. The most common unmet need was a lack of energy and tiredness (75%). Higher levels of supportive care needs were associated with worse physical functioning (beta=-0.30, p<0.001), greater symptom bother (beta=0.25, p=0.008), lower satisfaction with health care (beta=-0.24, p=0.002), and higher levels of intrusive thoughts about cancer (beta=0.40, p<0.001). The sample was most interested in receiving additional information about their disease and treatment (61.0%), exercise-related information and support (54.3%), and assistance dealing with fatigue (46.7%). Over 91% expressed interest in at least one specific supportive care service, and 51.4% were interested in one or more psychological services. CONCLUSION AND IMPLICATIONS FOR CANCER SURVIVORS: Our findings suggest that lung cancer survivors have many unmet needs. Patients who report higher physical distress and intrusive stress symptoms, or lower satisfaction with their health care, may experience the highest level of supportive care need and intervention.
We developed and validated a brief, yet sensitive, 33-item general cancer quality-of-life (QL) measure for evaluating patients receiving cancer treatment, called the Functional Assessment of Cancer Therapy (FACT) scale.
The five-phase validation process involved 854 patients with cancer and 15 oncology specialists. The initial pool of 370 overlapping items for breast, lung, and colorectal cancer was generated by open-ended interview with patients experienced with the symptoms of cancer and oncology professionals. Using preselected criteria, items were reduced to a 38-item general version. Factor and scaling analyses of these 38 items on 545 patients with mixed cancer diagnoses resulted in the 28-item FACT-general (FACT-G, version 2). In addition to a total score, this version produces subscale scores for physical, functional, social, and emotional well-being, as well as satisfaction with the treatment relationship. Coefficients of reliability and validity were uniformly high. The scale's ability to discriminate patients on the basis of stage of disease, performance status rating (PSR), and hospitalization status supports its sensitivity. It has also demonstrated sensitivity to change over time. Finally, the validity of measuring separate areas, or dimensions, of QL was supported by the differential responsiveness of subscales when applied to groups known to differ along the dimensions of physical, functional, social, and emotional well-being.
The FACT-G meets or exceeds all requirements for use in oncology clinical trials, including ease of administration, brevity, reliability, validity, and responsiveness to clinical change. Selecting it for a clinical trial adds the capability to assess the relative weight of various aspects of QL from the patient's perspective.
PURPOSE
We developed and validated a brief, yet sensitive, 33-item general cancer quality-of-life (QL) measure for evaluating patients receiving cancer treatment, called the Functional Assessment of Cancer Therapy (FACT) scale.
METHODS AND RESULTS
The five-phase validation process involved 854 patients with cancer and 15 oncology specialists. The initial pool of 370 overlapping items for breast, lung, and colorectal cancer was generated by open-ended interview with patients experienced with the symptoms of cancer and oncology professionals. Using preselected criteria, items were reduced to a 38-item general version. Factor and scaling analyses of these 38 items on 545 patients with mixed cancer diagnoses resulted in the 28-item FACT-general (FACT-G, version 2). In addition to a total score, this version produces subscale scores for physical, functional, social, and emotional well-being, as well as satisfaction with the treatment relationship. Coefficients of reliability and validity were uniformly high. The scale's ability to discriminate patients on the basis of stage of disease, performance status rating (PSR), and hospitalization status supports its sensitivity. It has also demonstrated sensitivity to change over time. Finally, the validity of measuring separate areas, or dimensions, of QL was supported by the differential responsiveness of subscales when applied to groups known to differ along the dimensions of physical, functional, social, and emotional well-being.
CONCLUSION
The FACT-G meets or exceeds all requirements for use in oncology clinical trials, including ease of administration, brevity, reliability, validity, and responsiveness to clinical change. Selecting it for a clinical trial adds the capability to assess the relative weight of various aspects of QL from the patient's perspective.
To document quality-of-life (QOL), symptom distress and Karnofsky Performance Status (KPS) over time, 67 advanced cancer patients completed the Functional Assessment of Cancer Therapy (FACT-G) and Memorial Symptom Assessment Scale - Short Form (MSAS-SF) from the time of determination of no active anti-cancer treatment to death at 3-6 week intervals. The KPS was determined at each time point. Statistical analyses with mixed effects models were performed to examine the association between changes in QOL, symptom distress and KPS at selected time points in the advanced cancer trajectory. Median survival for the population was 115 days, and a median of 5 interviews was completed per patient. Slow steady changes in KPS, MSAS-SF and FACT-G QOL parameters started 6 months prior to death, with accelerated decline in the last 2 to 3 months and dramatic increase in psychological symptoms during the last month. Different domains changed at different rates at different selected time points. The correlation between changes in KPS, FACT-G parameters and MSAS-SF subscales at enrollment and near death suggests that when patients were stable, changes in KPS correlated significantly with changes in sum FACT-G QOL and physical well being, and with changes in the MSAS-SF subscales. However, when patients were near death, changes in KPS did not correlate with any other changes, and only emotional well being reflected changes in physical and psychological symptom distress. The sequence of changes, and how determinants of symptom distress and QOL change over time, may help clinicians assess the prognosis of terminally ill patients and plan appropriate interventions.
Palliative medicine is now a recognized medical subspecialty. The goal of palliative medicine is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of the stage of their illness.(1) Typically, palliative medicine teams consist of multiple disciplines (such as physicians, advanced practice nurses, social workers, and chaplains) to address several domains of the patient experience. Medical oncologists have routinely provided palliative care to their patients along with antineoplastic therapy. Nevertheless, there is a recognized need for an improvement in palliative care delivery to the patient with advanced cancer. This narrative review outlines recent clinical trials of palliative care being integrated into routine oncological care.
Traditionally, medical oncology has focused on the active period of diagnosis, treatment and follow-up of cancer patients, and palliative medicine, the pre-terminal and end-of-life phases. Palliative medicine physicians have particular expertise in communication and symptom control, especially, for example, with pain management. Medical oncologists also have need of excellent communication skills and knowledge of supportive care issues, such as the management of emesis, bone marrow suppression, mucositis, neuropathy, and symptoms created by treatment. This article examines the interface between medical oncology and supportive and palliative care to emphasize how each can benefit from the others.
The literature consistently shows that lung cancer patients experience both greater number of symptoms and concerns about health and existential issues compared with patients from other cancer populations and that patient distress near diagnosis predicts survival in lung cancer patients. Also evidence suggests that symptom characteristics (e.g. symptom intensity and frequency) influence distress. The relationship between aspects of patients' symptom experiences can be complex and the mechanisms underpinning this association are not fully understood at present.
Semi-structured interviews were conducted with 17 lung cancer patients and 15 primary caregivers at four time points: at the beginning of treatment and then subsequently at three, six, and twelve months, providing a total of 44 patient and 32 caregiver interviews. Interpretative Phenomenological Analysis was employed in the data analysis.
The analysis presented here concentrates on two areas which was reported to influence distress in this population: (1) patients' perception of symptoms and symptom characteristics and their associated distress; and (2) the relationship between patients' causal reasoning and their distress.
The complexity of the issues involved in the development of symptom distress needs to be recognised by health care professionals in this poor prognosis group of patients. Better patient preparation about symptoms may alleviate some of the symptom distress in lung cancer patients.
Our comprehensive cancer centre adopted the WHO recommendation literally in the cancer care guidelines to implement the early integration (EI) of palliative care (PC). Evaluation of the first 2 years of this approach revealed that this guideline was too vague to trigger EI.
As a consequence, an interdisciplinary working group was set up to propose and implement a more effective concept.
An interdisciplinary (PC, oncology, radiotherapy, etc.) working group identified the need to (a) specify the timing of EI and (b) specify PC assignments by (c) providing more clear cut semantic and clinical definitions. As a result of repeated discussion in the different interdisciplinary working groups in charge of developing and consenting a once-yearly update of treatment guidelines [standard operating procedure (SOP)] for each malignancy, the need for disease-specific EI SOPs was identified.
SOPs were developed for 19 malignancies (a) to identify a disease-specific point in each disease trajectory to initiate EI ("green flags") and to provide (b) a clear delineation and semantic differentiation of PC assignments ["palliative care" vs. "supportive" or "palliative therapies" ("green" vs. "red flags")].
To date, ASCO and WHO recommendations for EI lack detailed information about timing and infrastructure. The guidelines presented here aim to provide the missing information by reporting our developed and consented interdisciplinary guidelines for EI.
With this concept, the authors provide a framework for realizing EI and hope to initiate a discussion about specific recommendations for EI.
Advancements in the surgical and medical treatment of lung cancer have resulted in more favorable short-term survival outcomes. After initial treatment, lung cancer requires continued surveillance and follow-up for long-term side effects and possible recurrence. The integration of quality palliative care into routine clinical care of patients with lung cancer after surgical intervention is essential in preserving function and optimizing quality of life through survivorship. An interdisciplinary palliative care model can effectively link patients to the appropriate supportive care services in a timely fashion. This article describes the role of palliative care for patients with lung cancer.
Aggregates of concurrent symptoms, known as symptom clusters (SxCls), have been described in predominantly cross-sectional samples of lung cancer (LC) patients undergoing treatment.
The objective of this study was to delineate SxCls in LC survivors up to five years after diagnosis, investigate their stability over time, and identify determinants of SxCl development and resolution.
A sensitivity approach involving multiple exploratory and confirmatory analyses was applied to an eight-year prospective cohort study that annually assessed 2405 patients with LC for symptom burden with the Lung Cancer Symptom Scale and Linear Analogue Self-Assessment.
A single robust SxCl of fatigue, cough, and dyspnea was identified in 14.6%, 12.9%, 14.1%, 14.6%, and 15.4% of participants at Years 1-5 after diagnosis, respectively. Participants with the SxCl (SxCl (+)) were more likely to die than those without it; but this tendency diminished over time. SxCl persistence varied, with ≥40% of surviving patients annually transitioning to or from the SxCl(+) state until Year 4, after which the SxCl became increasingly stable. The SxCl was more likely to develop among male survivors who underwent surgery, received radiation, and were current smokers.
A single SxCl comprising dyspnea, fatigue, and cough has a stable prevalence among LC survivors up to five years after diagnosis but is not stable among individuals. Initially, after diagnosis, the SxCl is associated with a greater risk of death; however, after Year 2, the SxCl becomes increasingly stable and provides a marker for parenchymal lung injury.
Lung cancer patients generally experience high levels of physical and psychological distress and decreased quality of life (QOL). Sense of coherence (SOC) has been conceptualized as a personality orientation reflecting the degree to which an individual perceives their world as comprehensible, manageable and meaningful. The present study investigated the associations of SOC with QOL in lung cancer. It also examined potential psychological mediators by which SOC may exert its influences on QOL. Fifty-six participants with non-small cell lung cancer were administered self-report assessments of SOC, QOL and psychological distress. Results revealed that SOC was positively associated with QOL and this relationship may be mediated by depressive symptoms. The current study supports the notion that SOC may be a protective factor with regard to psychological adjustment and QOL in cancer survivors.
British Journal of Cancer (2002) 87, 1481–1481. doi:10.1038/sj.bjc.6600646 www.bjcancer.com
© 2002 Cancer Research UK
Sexual concerns are understudied and undertreated for patients with lung cancer. Objectives were to: (1) assess sexual concerns in lung cancer patients and examine differences by age and gender; (2) examine stability of sexual concerns over time; and (3) evaluate whether sexual concerns in lung cancer patients are significantly related to physical and emotional symptoms.
Data were collected from lung cancer patients during four outpatient clinic visits over 6 months. Measures included sexual concerns (reduced sexual enjoyment, interest, or performance), fatigue (FACIT Fatigue Scale), shortness of breath, and emotional distress (acute distress, despair; Patient Care Monitor). Linear mixed model analyses were conducted.
Sexual concerns were common, with 52% of patients reporting at least mild sexual concerns and were stable. Sexual concerns were significantly associated with physical and emotional symptoms; particularly strong relationships were found between sexual concerns and shortness of breath and emotional distress. Age moderated the relationship between both fatigue and shortness of breath and sexual concerns; gender moderated the relationship between emotional distress and sexual concerns.
Self-reported sexual concerns are common in people with lung cancer, are stable, and are related significantly to physical and emotional symptoms; age and gender influence the distress associated with sexual symptoms in this population. Better attention to patient concerns, treatment, and more research are clearly needed.
Denial is a well-known phenomenon in clinical oncology practice. Yet whether the impact of denial on patient well-being is beneficial or harmful remains unknown. The purpose of the current study is to investigate the relationship between denial and social and emotional outcomes in a large sample of lung cancer patients over an extended time period. Denial and social and emotional outcomes were measured in 195 newly diagnosed lung cancer patients. Four assessments were conducted over 8 months. The level of denial was measured using the Denial of Cancer Interview. Patient-reported social and emotional outcomes were measured using the EORTC-QLQ-30 and the HADS. Patients with a moderate or increasing level of denial over time reported better social outcomes (role functioning: p = 0.0036, social functioning: p = 0.027) and less anxiety (p = 0.0001) and depression (p = 0.0019) than patients with a low level of denial. The overall quality of life was better among lung cancer patients who displayed either moderate or increasing levels of denial compared with those who displayed low levels of denial (p < 0.0001). A certain level of denial in lung cancer patients can have a protective effect on social and emotional outcomes. Clinicians should take this into account when providing information about the illness and its prognosis.
Patients with advanced cancer frequently experience significant symptom burden and psychosocial distress. Palliative care has evolved as a discipline that addresses many of these concerns. Yet, palliative care referrals remain delayed as patients continue to focus on cancer treatments. Using a car analogy, we propose that the two seemingly opposing goals of care - receipt of cancer therapies and symptom management - can be addressed concurrently under an integrated-care model. To ensure high quality and early access to supportive/palliative care services, oncologists need to be comfortable with the core competencies related to symptom management, psychosocial interventions, communication, and transition of care. For patients with severe distress, early referral to the interdisciplinary supportive/palliative care team is recommended. Through better integration and education, oncologists and supportive/palliative care specialists can work together to minimize the burden of progressive cancer for patients like Tom.
Researchers have shown that coping style is related to pain and adjustment in people with chronic illness. This study was the first to examine how coping style related to pain, pain coping strategies, and depression in lung cancer outpatients. We conducted a comparative, secondary data analysis of 107 lung cancer patients (73% male, mean age 61.4±10.43 years, 88% Caucasian). As in prior studies, we classified patients into four coping style groups based on Marlowe-Crowne Social Desirability Scale and trait anxiety scores. The coping style groups were low-anxious (n=25); high-anxious (n=31); defensive high-anxious (n=21); and repressive (n=30). Compared to other coping style groups, the repressive group reported statistically significant lower mean scores for pain quality, pain catastrophizing, and depression. Assessing coping style by measuring personal characteristics such as social desirability and trait anxiety may help clinicians to identify vulnerable individuals with lung cancer who may be candidates for early and timely intervention efforts to enhance adjustment to pain.
There is a growing awareness that symptoms frequently co-occur in 'symptom clusters' and that understanding these clusters may improve the management of unrelieved symptoms in patients. In-depth longitudinal exploration of lung cancer patients' symptom experiences is used to examine patient symptom experiences and distress across the disease trajectory of lung cancer.
Semi-structured interviews were conducted with patients and their primary caregivers at four time points: at the beginning of treatment and then subsequently at three, six, and twelve months. Interpretative Phenomenological Analysis was employed in the data analysis.
Findings indicate that a cluster of interacting respiratory symptoms play a central role in patients' symptom experiences within the lung cancer population. The interviews also suggest that symptoms such as cough which are under-represented in research within this population may play an important role in patients' symptom experiences.
Longitudinal qualitative investigation offers a valuable method for improving our understanding of patients' experiences of lung cancer and for identifying potential opportunities to improve patient quality of life.
The current state of palliative care in cancer centers is not known.
To determine the availability and degree of integration of palliative care services and to compare between National Cancer Institute (NCI) and non-NCI cancer centers in the United States.
A survey of 71 NCI-designated cancer centers and a random sample of 71 non-NCI cancer centers of both executives and palliative care clinical program leaders, where applicable, regarding their palliative care services between June and October 2009. Survey questions were generated after a comprehensive literature search, review of guidelines from the National Quality Forum, and discussions among 7 physicians with research interest in palliative oncology. Executives were also asked about their attitudes toward palliative care.
Availability of palliative care services in the cancer center, defined as the presence of at least 1 palliative care physician.
A total of 142 and 120 surveys were sent to executives and program leaders, with response rates of 71% and 82%, respectively. National Cancer Institute cancer centers were significantly more likely to have a palliative care program (50/51 [98%] vs 39/50 [78%]; P = .002), at least 1 palliative care physician (46/50 [92%] vs 28/38 [74%]; P = .04), an inpatient palliative care consultation team (47/51 [92%] vs 28/50 [56%]; P < .001), and an outpatient palliative care clinic (30/51 [59%] vs 11/50 [22%]; P < .001). Few centers had dedicated palliative care beds (23/101 [23%]) or an institution-operated hospice (37/101 [37%]). The median (interquartile range) reported durations from referral to death were 7 (4-16), 7 (5-10), and 90 (30-120) days for inpatient consultation teams, inpatient units, and outpatient clinics, respectively. Research programs, palliative care fellowships, and mandatory rotations for oncology fellows were uncommon. Executives were supportive of stronger integration and increasing palliative care resources.
Most cancer centers reported a palliative care program, although the scope of services and the degree of integration varied widely.
The diagnosis of lung cancer in the advanced stage of illness, the poor prognosis associated with the disease, and the side effects of chemotherapy all have an impact on various dimensions of quality of life (QoL). THE PURPOSE OF THE RESEARCH: The current study was designed to describe the QoL and symptom distress of lung cancer patients undergoing chemotherapy and to explore the relationships between demographic/treatment-related characteristics and QoL.
The sample consisted of 154 lung cancer patients undergoing chemotherapy. The symptom experiences and QoL of lung cancer patients undergoing chemotherapy were evaluated using the Memorial Symptom Assessment Scale and Quality of Life Index - Cancer Version.
The lung cancer patients had low QoL scores. The scores on the Health and Functioning subscale were the lowest (20.33 ± 5.59), while those of the Family subscale were the highest (27.66 ± 2.77). The most common physical symptoms experienced by lung cancer patients were lack of energy, coughing, pain, lack of appetite, and nausea, while the psychological symptoms were feeling nervous, difficulty sleeping, feeling sad, and worrying. There was a negative relationship between the symptom distress and quality of life scores (r=-0.45; p<0.000). Females and those with low income levels and performance status experienced greater symptom distress.
Lung cancer patients receiving chemotherapy suffer many limitations due to the symptoms and disruptions to their QoL, arising from both the disease process and its treatment. Lung cancer patients need to be assessed regularly and supported.
Patient-reported outcomes have shown independent prognostic value for patients with nonsmall cell lung cancer (NSCLC). However, translating patient-reported outcomes into useful prognostic information for individual patients has been problematic.
A total of 94 patients with advanced NSCLC and an Eastern Cooperative Oncology Group performance status (PS) of 0 to 2 who qualified for chemotherapy rated symptom severity using the M. D. Anderson Symptom Inventory before and after their first chemotherapy cycle. Prognostic values of baseline symptoms and changes in symptom severity were examined by Cox proportional hazards models.
In multivariate analysis, controlled for demographic and other factors, baseline coughing rated > or =4 independently predicted significantly higher risk for shorter survival (hazards ratio [HR], 8.69; P < .0001). Patients with coughing > or =4 and a PS of 2 were more likely to have shorter survival (HR, 20.6; P < .0001) than patients with coughing <4 and a PS of 0 to 1. A 1-point or greater increase in severity of fatigue (P < .05), shortness of breath, or poor appetite (P < .01) from baseline to the end of the first chemotherapy cycle was also found to be independently associated with higher risk for poor survival.
An increased risk for shorter survival was indicated by moderate to severe coughing at baseline or by increased fatigue or shortness of breath during the first chemotherapy cycle in patients with advanced NSCLC. Although cross-validation is needed, these data suggest that an individual patient's symptom severity scores, quickly obtainable in the clinic, might contribute clinically useful information for treatment planning for that patient. Society.
We conducted this pooled analysis to assess the prognostic value of pretreatment Quality of Life (QOL) assessments on overall survival (OS) in advanced non-small cell lung cancer (NSCLC).
Four hundred twenty patients with advanced NSCLC (stages IIIB with pleural effusion and IV) from six North Central Cancer Treatment Group trials were included in this study. QOL assessments included the single-item Uniscale (355 patients), Lung Cancer Symptom Scale (217 patients), and Functional Assessment of Cancer Therapy-Lung (197 patients). QOL scores were transformed to a 0 to 100 scale with higher scores representing better status and categorized using the sample median or clinically deficient score (CDS, <or=50 versus >50). Cox proportional hazards models stratified by study were used to evaluate the prognostic importance of QOL on OS alone and in the presence of other prognostic factors such as performance status, age, gender, body mass index, and laboratory parameters.
Pretreatment QOL accessed by Uniscale was significantly associated with OS univariately (p < 0.0001). Uniscale (p < 0.0001; hazard ratio = 1.6 for the sample median and 2.0 for the CDS categorization) and body mass index were the only significant predictors of OS multivariately. The median survival of patients who had a Uniscale score less than or equal to the CDS (<or=50) was 5.7 versus 11.1 months for the >50 group; and 7.8 versus 13 months for the less than or equal to sample median (<or=83) group and >83 group, respectively. The Lung Cancer Symptom Scale and the Functional Assessment of Cancer Therapy-Lung total scores were not significant predictors of OS.
Pretreatment QOL measured by Uniscale is a significant and an independent prognostic factor for OS, and QOL should be routinely integrated as a stratification factor in advanced NSCLC trials.
GDF15 (growth-differentiation factor 15) is a novel antihypertrophic factor which is induced in the heart in response to pressure overload and plays an important regulatory role in the process of hypertrophy. In the present study, we have investigated the relationship between GDF15 gene variants and left ventricular hypertrophy in human essential hypertension. A community-based hypertensive population sample of 1527 individuals (506 men and 1021 women) was genotyped for three GDF15 genetic variants, including one tag variant -3148C>G (rs4808793) and two exonic variants +157A>T (rs1059369) and +2438C>G (rs1058587). The effects of those variants on gene expression were studied by use of luciferase reporter assays and the determination of plasma GDF15 levels. Only the tag variant -3148G was significantly associated with a lower risk of left ventricular hypertrophy [odds ratio=0.75 (95% confidence interval, 0.63-0.89); P=0.0009]. Multiple regression analyses confirmed that -3148G predicted the decrease in left ventricular end-diastolic diameter (beta=-0.10, P=0.0001), end-systolic diameter (beta=-0.09, P=0.0007), mass (beta=-0.11, P<0.0001) and indexed mass (beta=-0.12, P<0.0001). These effects were independent of conventional factors, including gender, age, body surface area, blood pressure, diabetes, cigarette smoking and alcohol consumption. The transcription activity of the -3148G-containing construct was increased 1.45-fold (P=0.015) at baseline and 1.73-fold (P=0.008) after stimulation with phenylephrine when compared with the -3148C construct. The -3148G allele was also associated with a significant increase in the plasma GDF15 level in hypertensive subjects (P=0.04). In conclusion, the results show that a promoter haplotype containing the -3148G variant increases GDF15 transcription activity and is associated with favourable left ventricular remodelling in human essential hypertension.
This study evaluated a modified, timed version of the "Get-Up and Go" Test (Mathias et al, 1986) in 60 patients referred to a Geriatric Day Hospital (mean age 79.5 years). The patient is observed and timed while he rises from an arm chair, walks 3 meters, turns, walks back, and sits down again. The results indicate that the time score is (1) reliable (inter-rater and intra-rater); (2) correlates well with log-transformed scores on the Berg Balance Scale (r = -0.81), gait speed (r = -0.61) and Barthel Index of ADL (r = -0.78); and (3) appears to predict the patient's ability to go outside alone safely. These data suggest that the timed "Up & Go" test is a reliable and valid test for quantifying functional mobility that may also be useful in following clinical change over time. The test is quick, requires no special equipment or training, and is easily included as part of the routine medical examination.
The Older Americans Resources and Services (OARS) methodology was designed to assess functional capacity in five dimensions (social resources, economic resources, mental health, physical health, and activities of daily living) and to measure use of and need for 24 types of generic services. The OARS questionnaire now has been used in more than 150 research and practice settings. Recent refinements in the OARS methodology include new information about validity and reliability, computerized summary ratings for the five dimensions of functional status, and eleven scales that measure specific aspects of functioning within the five dimensions. This paper describes the conceptual foundation, appropriate uses, psychometric properties, and recent refinements in the OARS methodology. Empirical data from a geriatric clinic population are used for purposes of illustration. The paper presents an assessment of the strengths and limitations of the OARS methodology based on more than a decade of experience. Particular attention is paid to the degree to which the measures of functional status can be related to health service use measures to inform geriatric research and practice.
A 6-item Orientation-Memory-Concentration Test has been validated as a measure of cognitive impairment. This test predicted the scores on a validated 26-item mental status questionnaire of two patient groups in a skilled nursing home, patients in a health-related facility, and in a senior citizens' center. There was a positive correlation between scores on the 6-item test and plaque counts obtained from the cerebral cortex of 38 subjects at autopsy. This test, which is easily administered by a nonphysician, has been shown to discriminate among mild, moderate, and severe cognitive deficits.
This report outlines the development, validity, and reliability of Part A of the OARS Multidimensional Functional Assessment Questionnaire. Part A permits assessment of individuals' functioning on each of five dimensions (social, economic, mental health, physical health and self-care capacity), the detailed information in each area being summarized on a 6-point rating scale by a rater. Content and consensual validity were ensured by the manner of construction. Information on criterion validity was obtained for all dimensions except social. The criterion used and their associated Kendall's Tau values were: an objective economic scale (.62); ratings based on personal interviews by geropsychiatrists (.60); physician's associates (.82); and physical therapists (.89). For 11 geographically dispersed raters from research and clinic settings, intraclass correlational coefficients, based on 30 subjects, ranged from .66 on physical health to .87 in self-care capacity; 74% of the ratings were in complete agreement, 24% differed by one point.
The FACT-L (version 3) is a 44-item self-report instrument which measures multidimensional quality of life. Available in eight languages, it is currently being used in several Phase II and III lung cancer clinical trials. Reliability and validity of the 33-item version 2 of the FACT-General (FACT-G) have previously been published. This paper reports further validation data on the FACT-G with a subsample of lung cancer patients from the original publication and, more importantly, presents data on the Lung Cancer Subscale (LCS). The nine LCS questions were administered along with the FACT-G to 116 patients with lung cancer. Internal consistency (coefficient alpha) was improved from 0.53 to 0.68 by dropping two questions which were uncorrelated with the others. A subset of 41 patients was tested again at 2 months to evaluate sensitivity to change in performance status rating (PSR) and to obtain estimates of a clinically meaningful change score for the FACT-G and the 7-item LCS. Using a linear test for trend, sensitivity to change in performance status rating (PSR) was obtained with the Total score (P = 0.03), the Physical Well Being (PWB) subscale (P = 0.02), the Functional Well Being (FWB) subscale (P = 0.05), and the LCS (P = 0.03). A 21-item Trial Outcome Index (TOI), combining scores on PWB, FWB and LCS, was highly reliable (coefficient a = 0.89) and sensitive to change in PSR F(1,38) = 4.84 (P = 0.01). This TOI is probably the most relevant and precise indicator of patient-reported quality of life available for lung cancer patients who complete the FACT-L while participating in an oncology clinical trial. The FACT-L may also be of benefit in evaluating quality of life in patients with lung diseases other than cancer.
The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the cancer population. Randomly selected inpatients and outpatients (n=246) with prostate, colon, breast or ovarian cancer were assessed using the MSAS and a battery of measures that independently evaluate phenomena related to quality of life. Symptom prevalence in the 218 evaluable patients ranged from 73.9% for lack of energy to 10.6% for difficulty swallowing. Based on a content analysis, three symptoms were deleted and two were added; the revised scale evaluates 32 physical and psychological symptoms. A factor analysis of variance yielded two factors that distinguished three major symptom groups and several subgroups. The major groups comprised psychological symptoms (PSYCH), high prevalence physical symptoms (PHYS H), and low prevalence (PHYS L). Internal consistency was high in the PHYS H and PSYCH groups (Cronback alpha coefficients of 0.88 and 0.83, respectively), and moderate in the PHYS L group (alpha = 0.58). Although the severity, frequency and distress dimensions were highly intercorrelated, canonical correlations and other analyses demonstrated that multidimensional assessment (frequency and distress) augments information about the impact of the symptoms. High correlations with clinical status and quality of life measures support the validity of the MSAS and indicate the utility of several subscale scores, including PSYCH, PHYS, and a brief Global Distress Index. The MSAS is a reliable and valid instrument for the assessment of symptom prevalence, characteristics and distress. It provides a method for comprehensive symptom assessment that may be useful when information about symptoms is desirable, such as clinical trials that incorporate quality of life measures or studies of symptom epidemiology.
In-person cognitive evaluations can be costly and labor intensive in geographically widespread populations. Reliable telephone instruments that screen for cognitive status would greatly facilitate epidemiologic and other longitudinal studies. We evaluated the reliability of the Blessed Information-Memory-Concentration (IMC) test when administered by telephone. Eighty-four subjects with a wide range of cognitive abilities were administered the Blessed IMC twice over a 3-week interval. Forty-nine of the subjects were administered the test both by telephone and in-person, and 35 of the subjects were tested twice by telephone. Spearman's rank correlation was used to compare scores of the different administrations (.96; P < .001) and to examine test-retest reliability (.96; P < .001). The Blessed Telephone IMC (TIMC) test exhibits excellent reliability both when compared to in-person administration as well as in test-retest results. The Blessed TIMC appears to be a practical instrument for population and longitudinal studies when in-person assessment is not feasible.
This is the first published report on the validation of the Functional Assessment of Cancer Therapy-Breast (FACT-B), a 44-item self-report instrument designed to measure multidimensional quality of life (QL) in patients with breast cancer. The FACT-B consists of the FACT-General (FACT-G) plus the Breast Cancer Subscale (BCS), which complements the general scale with items specific to QL in breast cancer. The FACT-B was developed with an emphasis on patients' values and brevity and is available in nine languages.
Two validation samples were used for this report. The first (n = 47) was tested twice over a 2-month period to assess sensitivity to change. Significant sensitivity to change in performance status rating (PSR) was demonstrated for the FACT-B total score, the Physical Well-Being (PWB) subscale, the Functional Well-Being (FWB) subscale, and the BCS. Sensitivity to change in QL as measured by the Functional Living Index-Cancer (FLIC) was documented in the FACT-B total score, PWB, FWB, and Emotional Well-Being (EWB). Additional validity and reliability data were obtained from a larger sample (n = 295). The alpha coefficient (internal consistency) for the FACT-B total score was high (alpha = .90), with subscale alpha coefficients ranging from .63 to .86. Evidence supported test-retest reliability, as well as convergent, divergent, and known groups validity.
The FACT-B is appropriate for use in oncology clinical trials, as well as in clinical practice. It demonstrates ease of administration, brevity, reliability, validity, and sensitivity to change.
To assess the impact of disease and treatment on patients with advanced non-small cell lung cancer (NSCLC), we set out to determine a clinically meaningful change (CMC) on the Lung Cancer Subscale (LCS) and the Trial Outcome Index (TOI) of the Functional Assessment of Cancer Therapy-Lung (FACT-L) questionnaire. We used data from Eastern Cooperative Oncology Group study 5592 (E5592), a randomized trial comparing three chemotherapeutic regimens in 599 advanced NSCLC patients. Patients completed the FACT-L at baseline (pretreatment), 6 weeks, 12 weeks, and 6 months. Comparing across baseline performance status (0 vs. 1), prior weight loss (<5% vs. > or = 5%), and primary disease symptoms (< or = 1 vs. >1), LCS and TOI score differences ranged from 2.4 to 3.6 and 6.5 to 9.2, respectively (all Ps <.001). Mean improvement in LCS score from baseline to 12 weeks was 2.4 points in patients who had responded to treatment versus 0.0 points in patients who had progressive disease. Twelve-week LCS change scores for patients progressing early were 3.1 points worse than those of patients progressing later (mean = -1.2 vs.1.9, respectively). Similarly, the average TOI change score from baseline to 12 weeks was -6.1 for patients who had progressive disease versus -0.8 points for patients who had responded to treatment. Twelve-week TOI change scores for patients progressing early (mean = -8.1) were 5.7 points worse than those of patients progressing later (mean = -8.1 vs. -2.4, respectively). Analyses assuming nonrandom missing data resulted in slightly larger differences. Clinically relevant change scores were estimated as two to three points for the LCS and five to seven points for the TOI, setting upper limits for minimal CMCs. These values were comparable to suggested distribution-based criteria of a minimally important difference. These results support use of a two to three point change in the LCS and five to six point change on the TOI of the FACT-L as a CMC, and offer practical direction for inclusion of important patient-based endpoints in lung cancer clinical trials.
A significant relation between religion and better health has been demonstrated in a variety of healthy and patient populations. In the past several years, there has been a focus on the role of spirituality, as distinctfrom religion, in health promotion and coping with illness. Despite the growing interest, there remains a dearth of well-validated, psychometrically sound instruments to measure aspects of spirituality. In this article we report on the development and testing of a measure of spiritual well-being, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp), within two samples of cancer patients. The instrument comprises two subscales--one measuring a sense of meaning and peace and the other assessing the role offaith in illness. A total score for spiritual well-being is also produced. Study 1 demonstrates good internal consistency reliability and a significant relation with quality of life in a large, multiethnic sample. Study 2 examines convergent validity with 5 other measures of religion and spirituality in a sample of individuals with mixed early stage and metastatic cancer diagnoses. Results of the two studies demonstrate that the FACIT-Sp is a psychometrically sound measure of spiritual well-being for people with cancer and other chronic illnesses.
To document quality-of-life (QOL), symptom distress and Karnofsky Performance Status (KPS) over time, 67 advanced cancer patients completed the Functional Assessment of Cancer Therapy (FACT-G) and Memorial Symptom Assessment Scale - Short Form (MSAS-SF) from the time of determination of no active anti-cancer treatment to death at 3-6 week intervals. The KPS was determined at each time point. Statistical analyses with mixed effects models were performed to examine the association between changes in QOL, symptom distress and KPS at selected time points in the advanced cancer trajectory. Median survival for the population was 115 days, and a median of 5 interviews was completed per patient. Slow steady changes in KPS, MSAS-SF and FACT-G QOL parameters started 6 months prior to death, with accelerated decline in the last 2 to 3 months and dramatic increase in psychological symptoms during the last month. Different domains changed at different rates at different selected time points. The correlation between changes in KPS, FACT-G parameters and MSAS-SF subscales at enrollment and near death suggests that when patients were stable, changes in KPS correlated significantly with changes in sum FACT-G QOL and physical well being, and with changes in the MSAS-SF subscales. However, when patients were near death, changes in KPS did not correlate with any other changes, and only emotional well being reflected changes in physical and psychological symptom distress. The sequence of changes, and how determinants of symptom distress and QOL change over time, may help clinicians assess the prognosis of terminally ill patients and plan appropriate interventions.
Screening for distress in cancer patients is recommended by the National Comprehensive Cancer Network, and a Distress Thermometer has previously been developed and empirically validated for this purpose. The present study sought to determine the rates and predictors of distress in a sample of patients being seen in a multidisciplinary lung cancer clinic. Consecutive patients (N=333) were recruited from an outpatient multidisciplinary lung cancer clinic to complete the Distress Thermometer, an associated Problem Symptom List, and two questions about interest in receiving help for symptoms. Over half (61.6%) of patients reported distress at a clinically significant level, and 22.5% of patients indicated interest in receiving help with their distress and/or symptoms. Problems in the areas of family relationships, emotional functioning, lack of information about diagnosis/treatment, physical functioning, and cognitive functioning were associated with higher reports of distress. Specific symptoms of depression, anxiety, pain and fatigue were most predictive of distress. Younger age was also associated with higher levels of distress. Distress was not associated with other clinical variables, including stage of illness or medical treatment approach. Similar results were obtained when individuals who had not yet received a definitive diagnosis of lung cancer (n=134) were excluded from analyses; however, family problems and anxiety were no longer predictive of distress. Screening for distress in a multidisciplinary lung cancer clinic is feasible and a significant number of patients can be expected to meet clinical criteria for distress. Results also highlight younger age and specific physical and psychosocial symptoms as predictive of clinically significant distress. Identification of the presence and predictors of distress are the first steps toward appropriate referral and treatment of symptoms and problems that contribute to cancer patients' distress.
We tested the reliability and validity of a brief symptom index for use with patients in the advanced stages of lung cancer. The Functional Assessment of Cancer Therapy--Lung Symptom Index-12 (FLSI-12) is a brief self-report measure that combines seven items addressing symptoms common in advanced-stage lung cancer with five symptoms or concerns that are relevant to most people with advanced-stage cancer. The index was administered prospectively to 92 advanced-stage lung cancer patients beginning at the initiation of chemotherapy and for 12 consecutive weeks. Reliability, convergent and concurrent validities, and responsiveness to change were determined and a minimally important difference (MID) was estimated. The index had good internal consistency (all Cronbach's alpha's>0.70), moderate to high item-to-total correlations (93% rho's> or =0.30), and correlated highly with a measure of overall quality of life (rho's> or =0.50). Baseline scores differentiated patients with better versus worse clinical features (p's<.05). Prospective changes in index scores were sensitive to changes in performance status ratings (p's<.05). An MID of 3-4 points was estimated by combining guideline-, distribution-, and anchor-based methods. The results show that the FLSI-12 is a psychometrically sound measure and support its use as an endpoint in clinical trials of advanced-stage lung cancer.
Longitudinal quality of life in advanced cancer patients: pilot study results from a VA medical cancer center Palliative Care in NSCLC 744 -Clinical Lung Cancer
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Hwang SS, Chang VT, Fairclough DL, et al. Longitudinal quality of life in advanced cancer patients: pilot study results from a VA medical cancer center. J Pain Symptom Manage 2003; 25:225-35. Palliative Care in NSCLC 744 -Clinical Lung Cancer November 2013