Fatigue and sleep-wake disturbances are significant problems for adolescents receiving chemotherapy and negatively affect the quality of life. Clinicians should routinely screen adolescent patients for fatigue and sleep disturbances and intervene to minimize their impact using pharmacologic and nonpharmacologic strategies.
Normative data and trends for a disease- and site-specific quality of life (QL) instrument for individuals with lung cancer, the Lung Cancer Symptom Scale (LCSS), are presented to facilitate the user's interpretation of test scores. Data for patients enrolled in two large, identical, randomized trials of a new combination chemotherapy regimen for patients with stages III and IV non-small-cell lung cancer (NSCLC) were combined into one dataset (n = 673). For these patients with a Karnofsky performance status (KPS) of 60-100%, QL had been prospectively measured at baseline, day 29 and every 6 weeks thereafter. Descriptive statistics for the LCSS are presented for three time points (baseline, day 29 and day 71) and for specific demographic and disease-related characteristics (age, gender, race, performance status and stage of disease) to provide expected values and their variability during chemotherapy. Data from a small dataset of 63 NSCLC inpatients with KPS scores of 20-50% are also presented for a comparison sample of supportive care for inpatients and hospice patients. For the 673 NSCLC patients at baseline there were no significant differences in QL by age, gender, or race. Major presenting lung cancer symptoms at baseline for this combined sample were dyspnea 87%, cough 86%, pain 81%, loss of appetite 75%, and hemoptysis 41%. Of these patients, 81% had three or more presenting symptoms at baseline (2% had no symptoms; 5%, one symptom; 12%, two symptoms; 18%, three symptoms; 27%, four symptoms; and 36%, five symptoms). The mean LCSS baseline score (best = 0; worst = 100) was 26.56 (SD 16.10). The mean scores for day 29 and day 71 were 25.46 (SD 16.52) and 25.30 (SD 16.93), respectively, but follow-up assessments on progressers were not obtained. Stage III patients had a mean LCSS score of 23.7 (SD 15.1), whereas stage IV patients reported a mean LCSS score of 27.3 (SD 16.3). The mean LCSS score for the group with KPS 60-70% was 34.8 (SD 15.5), and that for the group with KPS 80-100% was 23.3 (SD 15.1). The mean LCSS score for the lower performance group, with KPS scores of 20-50% at baseline, was 46.85 (SD 17.65).
dolescents diagnosed with cancer represent a group of patients with a unique cancer epidemiology, development profile, and research needs. The population's most common cancers include lymphoma, leukemia, central nervous system cancers, endocrine and germ cell tumors, and sarcomas-a spectrum of cancers different than that seen in adults or in younger children (Bleyer, Viny, & Barr, 2006). Adolescents face cancer and receive treatment at a time in life that is full of physical, social, and psychological growth that determines future careers, lifestyles, and relationships. These circumstances result in cancer treatment and symptom experiences for adolescents that are not likely to reflect those of younger children or adult patients. Age-specific research, therefore, is required to determine tailored disease and symptom-management strategies for these vulnerable adolescents with cancer. Cancer-related fatigue is one of the most frequent symptoms reported by adolescents and rated as one of the most distressing (
Problem and Purpose: The Lung Cancer Symptom Scale (LCSS), a site-specific health-related quality of life measure for patients with lung cancer, was originally developed using a Visual Analogue Scale (VAS) format. However, the VAS format is not readily compatible with data management and software programs using scanning. The primary aim of this study was to evaluate the convergence of ratings obtained with a Numerical Rating Scale (NRS), with an 11-pt response category format, to those obtained with a VAS format. The intent was to determine the degree of agreement between two formats to generalize the existing psychometric properties for the original measure to the new presentation. Design/setting: This methodological study evaluated the feasibility, reliability, and validity of a NRS format for the LCSS. The study was conducted at two cancer centers in New York City. Patients/procedures: Sixty-eight patients with non-small cell lung cancer (NSCLC) completed both versions of the LCSS along with demographic and feasibility questions on a single occasion. The VAS form was administered first, followed by the NRS form to prevent bias. The intraclass correlation coefficient (ICC), Lin's concordance correlation coefficient (CCC), and Bland-Altman plots were used to evaluate agreement and to characterize bias. Results: Cronbach's alpha for the NRS format total score was 0.89 for the 68 patients with NSCLC. Agreement was excellent, with both the ICC and CCC P 0.90 for the two summary scores (total score and average symptom burden index) for the LCSS. Only five of the nine individual items showed this level of strict agreement. An agreement criterion of P 0.80 (representing excellent) was observed for seven of the nine individual items (all but appetite loss and hemoptysis). Mean differences tended to be slightly lower for the VAS format compared to the NRS format (more so for the appetite and hemoptysis items), with evidence of scale shift for the same two items. The summary measures showed good concordance as measured by the ICC and CCC, but did display mean differences (VAS -NRS) of )2.7 and )3.1, respectively. Conclusions: Overall, the NRS format for the LCSS suitable for scanning has good feasibility, reliability (internal consistency), and convergent validity. The complete set of concordance evaluation measures supports the reproducibility of VAS scores by NRS scores, particularly for the two summary scores.
To appreciate the full benefits of treatment for lung cancer, especially in trials that fail to show improvements in survival, data recording the quality of life must be captured and refined to produce meaningful information. A conceptual model for quality of life for lung cancer patients was tested to obtain information about the dimensions of the quality-of-life construct for ongoing development and testing of a subjective measure for clinical trials. Using a longitudinal study design, the stability of predictive factors of the physical and functional dimensions of quality of life were examined using regression analysis. A patient-rated quality-of-life measure, the Lung Cancer Symptom Scale (LCSS), was administered to 144 non-small-cell lung cancer patients at baseline, day 29, and day 71 of a chemotherapy trial. The range of explained variance for all three components of the lung cancer model over three assessment points was as follows: symptomatic distress 41%-53%, activity status 48%-52%, and overall quality of life 35%-53%. The three dimensions fluctuated slightly during intervention, but were relatively stable factors across all three times of evaluation. The LCSS model explained nearly half of the variance for quality of life experienced by lung cancer patients during therapy with a new chemotherapeutic agent. These findings provide support that the physical and functional dimensions are important predictors of quality of life for individuals with lung cancer. Meaningful subjective quality-of-life data can be obtained to evaluate an intervention by using a disease- and site-specific quality-of-life measure for individuals with lung cancer, based on a reproducible conceptual model such as the LCSS, which is suitable for serial measurement for the progressive disease of lung cancer.
The specific aims of this descriptive, comparative study were (1) to compare the decision-making quality and prevalence of risk behaviors (smoking, alcohol consumption, and illicit drug use) between 52 cancer-surviving adolescents and their peers; (2) to compare the relationship of decision-making quality and risk behavior prevalence in a subset of survivors who had a history of therapy with cognitive threat due to late effects of treatment to those without cognitive threat; and (3) to test the hypothesis that the higher the number of quality decision criteria adhered to, the fewer the risk behaviors exhibited by cancer-surviving adolescents. Findings indicated that the majority of teen survivors reported practicing poor-quality decision making for five of the seven criteria (peers, four of seven). There were no significant differences in decision making between teen survivors and their peers nor between survivors with cognitive threat and those without. Peers were significantly more likely to engage in one or more risk behaviors than teen survivors, but comparisons with two normative samples (state and national) revealed that cigarette smoking and alcohol use of the teen survivors were comparable with the general population. There was no significant difference in risk behaviors between survivors with a history of therapy with cognitive threat and those without. Survivors who reported higher adherence to quality decision criteria were less likely to report exhibiting risk behaviors than those with poorer decision making. Using the context of late effects due to cancer treatment, oncology nurses need to provide guidance in quality decision making as well as in risk behavior education.
The results of testing two instruments for consequential decision making are reported: a screening instrument, the Decision Making Quality Scale (DMQS), which assesses the degree to which a person adheres to seven quality criteria of decision making; and a diagnostic measure, the Decision Making Quality Inventory (DMQI), which assesses an individual's dominant decision-making style through six sequential stages of the process. The instruments are conceptually linked through the same theoretical framework, the Janis and Mann (1977) conflict model of decision making, as well as operationally linked as counterpart instruments. Feasibility of the instruments was demonstrated with low readability indexes, reasonable administration times, and respondent acceptability by six samples (N = 766). Content validity was supported by panels of experts in decision theory. Reliability coefficients were consistently high ( > .70) for all samples. Support for construct validity was obtained using the contrasted groups approach and relationship testing. The instruments are ready for research and clinical use with healthy adolescents and their parents, as well as with adolescents and young adults who have experienced a chronic illness such as cancer and with their parents.
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