An official American Thoracic Society statement: update on the mechanisms, assessment, and management of dyspnea.

BACKGROUND: Dyspnea is a common, distressing symptom of cardiopulmonary and neuromuscular diseases. Since the ATS published a consensus statement on dyspnea in 1999, there has been enormous growth in knowledge about the neurophysiology of dyspnea and increasing interest in dyspnea as a patient-reported outcome. PURPOSE: The purpose of this document is to update the 1999 ATS Consensus Statement on dyspnea. METHODS: An interdisciplinary committee of experts representing ATS assemblies on Nursing, Clinical Problems, Sleep and Respiratory Neurobiology, Pulmonary Rehabilitation, and Behavioral Science determined the overall scope of this update through group consensus. Focused literature reviews in key topic areas were conducted by committee members with relevant expertise. The final content of this statement was agreed upon by all members. RESULTS: Progress has been made in clarifying mechanisms underlying several qualitatively and mechanistically distinct breathing sensations. Brain imaging studies have consistently shown dyspnea stimuli to be correlated with activation of cortico-limbic areas involved with interoception and nociception. Endogenous and exogenous opioids may modulate perception of dyspnea. Instruments for measuring dyspnea are often poorly characterized; a framework is proposed for more consistent identification of measurement domains. CONCLUSIONS: Progress in treatment of dyspnea has not matched progress in elucidating underlying mechanisms. There is a critical need for interdisciplinary translational research to connect dyspnea mechanisms with clinical treatment and to validate dyspnea measures as patient-reported outcomes for clinical trials.

The development and testing of an instrument for perceived self-efficacy for fatigue self-management.

BACKGROUND: Persons with chronic illness commonly report fatigue. Measurement of perceived self-efficacy for fatigue self-management (PSEFSM) is essential if fatigue is to be monitored and enhanced to improve physical functional status. OBJECTIVE: The objective of the study was to describe the development and testing of the PSEFSM instrument. METHODS: The PSEFSM instrument was incorporated into 2 randomized controlled trials for secondary analysis (N=298): 63 persons with lung cancer and 235 persons with other cancer diagnoses undergoing a course of chemotherapy. RESULT: : Evidence for construct validity and generalizability was supported through hypotheses testing of the mediation pathway from fatigue to physical functional status through PSEFSM, with results indicating support for partial mediation. Structural modeling indicated a good model fit that further supported the construct validity of the PSEFSM instrument. CONCLUSIONS: The instrument provides a reliable and valid measure of PSEFSM that could be used in research to facilitate the development of interventions to increase perceived self-efficacy to achieve optimal symptom self-management. IMPLICATIONS FOR PRACTICE: The PSEFSM instrument is brief and easy to complete, which results in a low response burden for persons who are already fatigued, providing for regular use in transdisciplinary research and practice settings. This is important because the use of this instrument can impact how we partner with our patients to better understand how to manage this troublesome symptom, fatigue.

Testing a theoretical model of perceived self-efficacy for cancer-related fatigue self-management and optimal physical functional status.

BACKGROUND: Critical gaps exist in the understanding of cancer symptoms, particularly for cancer-related fatigue (CRF). Existing theories and models do not examine the key role perceived self-efficacy (PSE) plays in a person's ability to manage symptoms. OBJECTIVES: The objective of this study was to test the hypothesis that physical functional status (PFS) is predicted through patient characteristics, CRF, other symptoms, and PSE for fatigue self-management in persons with cancer. METHODS: This study is a secondary data analysis from the baseline observation of two randomized control trials. The combined data set includes 298 participants who were undergoing a course of chemotherapy. Key variables included physiological and contextual patient characteristics, the severity from CRF and other symptoms, PSE, and PFS. Path analysis examined the relationships among the variables in the proposed theoretical model. RESULTS: Persons with cancer reported CRF as the most prevalent symptom among a mean of 7.4 other concurrent symptoms. The severity from CRF had a direct and indirect effect on PFS, with CRF having a direct adverse impact on PFS (t = -7.02) and an indirect adverse effect as part of the severity from the other symptoms (t = 9.69), which also adversely impacted PFS (t = -2.71). Consistent with the proposed theoretical model, PSE had a positive effect on the PFS (t = 2.87) of persons with cancer while serving as a mediator between CRF severity and PFS. DISCUSSION: Cancer-related fatigue is prevalent and related to the presence of other symptoms, and PSE for fatigue self-management is an important factor influencing CRF and PFS. A foundation is provided for future intervention studies to increase PSE to achieve optimal PFS in persons with cancer.

Relationships among pain, fatigue, insomnia, and gender in persons with lung cancer.

PURPOSE/OBJECTIVES: To examine the relationships among pain, fatigue, insomnia, and gender while controlling for age, comorbidities, and stage of cancer in patients newly diagnosed with lung cancer within 56 days of receiving chemotherapy. DESIGN: Secondary data analysis. SETTING: Accrual from four sites: two clinical community oncology programs and two comprehensive cancer centers. SAMPLE: 80 patients newly diagnosed with lung cancer. METHODS: Analysis from baseline observation of a randomized clinical intervention trial. Multinomial log-linear modeling was performed to explain the relationships among pain, fatigue, insomnia, and gender. MAIN RESEARCH VARIABLES: Pain, fatigue, insomnia, and gender. FINDINGS: For all people with lung cancer, fatigue (97%) and pain (69%) were the most frequently occurring symptoms; insomnia occurred 51% of the time. A model containing all main effects (two-way interactions of pain and fatigue, pain and insomnia, and insomnia and gender; and the three-way interaction of pain, fatigue, and insomnia, along with three covariates [age, comorbidities, and stage of cancer]) was a good fit to the data. Parameter estimates indicated that a statistically significant effect from the model was the three-way interaction of pain, fatigue, and insomnia. Gender did not make a difference. Age, comorbidities, and stage of cancer were not significant covariates. CONCLUSIONS: For people newly diagnosed with lung cancer undergoing chemotherapy, multiple symptoms occur simultaneously rather than in isolation; a symptom cluster exists, consisting of pain, fatigue, and insomnia; and no relationship was found among gender, pain, fatigue, and insomnia. IMPLICATIONS FOR NURSING: By understanding this symptom cluster, healthcare providers can target specific troublesome symptoms to optimize symptom management and achieve the delivery of high-quality cancer care.

Symptom assessment of patients with chronic obstructive pulmonary disease.

The primary purpose of this secondary data analysis was to evaluate the efficacy and suitability of the Memorial Symptom Assessment Scale (MSAS) for use with patients with severe chronic obstructive pulmonary disease (COPD). Symptoms experienced by patients with severe COPD were assessed in the original investigation using the 32-item MSAS. The sample consisted of 72 individuals with COPD ranging in age from 36 to 79 years. To increase its efficiency for use with severely ill COPD patients, the original MSAS was shortened to include the 19 most frequently reported symptoms. Reliability of the revised tool remained high (Cronbach's alpha = .86). Content and convergent validity of the revised tool were also established. The revised MSAS appears to be an appropriate measure of the multidimensional, multisymptom experience of patients with severe COPD.

The influence of end-of-life cancer care on caregivers.

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status.

Symptom clusters related to specific cancers.

OBJECTIVES: To examine the current research related to symptom clusters in specific cancer diagnoses. DATA SOURCES: Research studies, review articles. CONCLUSION: Factors that can impact symptoms and their relationship include the stage of disease, treatment used, modification of treatment for the individual patient, patient co-morbidities as well as psychological, sociological, and cultural factors. Understanding is needed regarding which of these factors individually or in combination contribute to symptoms clustering together. The mechanism underlying symptom perception and interpretation need further exploration. Research focus should be on one type of cancer. IMPLICATIONS FOR NURSING PRACTICE: Symptom cluster research offers little at this point to be helpful in patient diagnosis, assessment, monitoring, or management of disease.

Burden and depression among caregivers of patients with cancer at the end of life.

PURPOSE/OBJECTIVES: To examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end of life. DESIGN: A prospective, longitudinal study was implemented with an inception cohort of patients and their family caregivers who were followed after the diagnosis and treatment of cancer. SETTING: Community oncology sites in the midwestern United States. SAMPLE: 152 family caregivers of patients with cancer who died during the course of the study. METHODS: Telephone interviews were conducted with patients at 6-8, 12-16, 24-30, and 52 weeks following diagnoses. In addition, patient medical records and state death certificates were reviewed. MAIN RESEARCH VARIABLES: Effect of caregiver age, gender, education, relationship to the patient, employment status, reports of patient symptoms, patient cancer type, stage of cancer, time from the patient's diagnosis to death, caregiver burden, and depression. FINDINGS: Caregivers aged 45-54 reported the highest levels of depressive symptoms, and caregivers aged 35-44 reported the strongest sense of abandonment. Caregivers who were the adult children of patients with cancer and those who were employed reported high levels of depressive symptoms. Feeling abandoned (a portion of caregiver burden) was more prevalent in female, nonspouse, and adult children caregivers, and adult children caregivers of patients with early-stage cancer and patients with multiple symptoms reported a high perception of disruption in their schedule because of providing care. Caregivers whose patients died early following diagnosis reported the highest depressive symptoms, burden, and impact on schedule. CONCLUSIONS: Caregivers reported levels of depression at thresholds for screening of clinical depression. The number of patient symptoms was related to levels of caregiver depressive symptoms. An association also was found between depression and employment status. Caregiver distress was not dependent on demands of care. IMPLICATIONS FOR NURSING: Very little research exists that prospectively analyzes family caregiver experiences of burden and depression when providing end-of-life cancer care for a family member. Interventions aimed at decreasing caregiver depressive symptoms should be targeted to caregivers who are middle-aged, adult children, and employed. Interventions aimed at decreasing the burden associated with feeling abandoned and having schedules disrupted while providing care should be targeted to caregivers who are female, nonspouse, and adult children, and caregivers of patients with early-stage cancer and multiple symptoms.

Symptom clusters in elderly patients with lung cancer.

PURPOSE/OBJECTIVES: To identify the number, type, and combination (cluster) of symptoms experienced by patients with lung cancer. DESIGN: A secondary analysis of data collected as part of a larger study. SETTING: 24 sites that included community hospitals, medical clinics, oncology clinics, and radiation-oncology clinics. SAMPLE: 220 patients newly diagnosed with lung cancer, ranging in age from 65-89 years (mean = 72 years, SD = 5.02), 38% with early-stage and 62% with late-stage lung cancer. METHODS: Subject self-report. FINDINGS: Factor analysis found that the symptoms of fatigue, nausea, weakness, appetite loss, weight loss, altered taste, and vomiting form a cluster. Initial staging of cancer, the number of comorbid conditions, and being treated with chemotherapy emerged as significant predictors of the symptoms reported. Few differences were noted between men and women. Correlation was found among the numbers of symptoms reported, symptom severity, and limitations attributed to symptoms. CONCLUSIONS: Patients with lung cancer report multiple distressing symptoms related to symptom severity and limitations. IMPLICATIONS FOR NURSING: Assessment of multiple symptoms is recommended in patients with lung cancer.

A cluster of symptoms over time in patients with lung cancer.

BACKGROUND: Patients with lung cancer present late in the disease and have multiple symptoms. Previous research has shown the symptom cluster of fatigue, weakness, weight loss, appetite loss, nausea, vomiting, and altered taste to be present at time of lung cancer diagnosis. OBJECTIVES: The study determined whether the symptom cluster identified at the time of diagnosis remained 3 and 6 months later, and whether there was a difference in the mean number of symptoms and the mean level of symptom severity over time. The relation of the severity rating for individual symptoms at the time of diagnosis and at 3 and 6 months after diagnosis was examined. Predictors for the number of symptoms and whether the symptom cluster was predictive of death were determined. METHODS: Secondary analysis of an existing data set for 112 patients with newly diagnosed lung cancer assessed at diagnosis and at 3 and 6 months was performed and determined whether they were alive or dead 19 months after diagnosis. RESULTS: The cluster of seven symptoms had internal consistency that remained at 3 and 6 months. The mean symptom severity and the number of symptoms at diagnosis were correlated with later ratings, but decreased in severity over time. A similar decrease in severity rating was seen for the individual symptoms in the cluster. The stage of cancer at diagnosis was the most predictive of the number of cluster symptoms reported. Death 6 to 19 months after diagnosis was predicted by age, stage of cancer at diagnosis, and symptom severity at 6 months. CONCLUSIONS: The symptom cluster remains over the course of lung cancer and is an independent predictor of the patient's death. Symptom severity, the number of symptoms reported, and the severity of the individual symptoms decreased over time. The stage of cancer at diagnosis is the best predictor of symptoms later in the disease.