Patricia J. Hollen

Quality of life assessment in individuals with lung cancer: Testing the Lung Cancer Symptom Scale (LCSS)

This paper presents the continued development and multi-institutional testing of an instrument focusing on measuring the physical and functional dimensions of quality of life. It emphasises evaluation of symptoms associated with lung cancer and their effect on activity status. The Lung Cancer Symptom Scale (LCSS) is a disease- and site-specific instrument which has both a patient and an observer (health care professional) form. The patient scale required 8 min to administer and the observer scale 2 min. The readability index was second-grade level for the patient scale and ninth-grade level for the observer scale. Content validity revealed a mean of 96% agreement for all major symptoms among 52 experts surveyed (confidence interval = 86-99%, P = 0.05). 69 patients with non-small cell and 52 patients with small cell lung cancer confirmed that the symptoms matched their experiences. Interrater reliability showed consistency for all items but one among 21 raters at eight institutions; that one item was consistent for 20 of the 21 raters. Similar results were found on a 9-month interval replication. Using the Kappa statistic to estimate extent of agreement for repeated interrater reliability, almost perfect agreement was obtained (mean coefficients, 0.95-0.98). Using the same rule of agreement as for Kappa (+/- one category) intrarater agreement was 95-100% for all 21 raters. Past test re-test reliability indicated high patient reproducibility for 52 patients (r > 0.75, P < 0.01 for all items). We conclude that (1) the LCSS demonstrates good feasibility, reliability, and content validity, (2) high interrater reliability indicates utility in multicentre trials, and (3) continued testing for internal consistency, construct validity and criterion-related validity is warranted.

Quality of life during clinical trials: conceptual model for the Lung Cancer Symptom Scale (LCSS)

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-smallcell 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 sitespecific 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.

Establishing comprehensive specialty follow-up clinics for long-term survivors of cancer Providing systematic physiological and psychosocial support

Late effects of multi-modality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer. It is estimated that there will be 180000–220000 childhood cancer survivors living in the United States in the year 2000. This number of survivors warrants program planning specific to their needs. Add to this the number of patients diagnosed with cancer as adults who have reached 5-year survival status, and the total population of long-term survivors of cancer justifies special programs to deal with the issues of survivorship. This paper addresses several questions: (a) What are the needs of cancer survivors? (b) Can these needs be met through specialty survivor clinics? (c) What are the benefits of survivor follow-up clinics? (d) Should survivor clinics for children and adults become standard care? The clinic structure and objectives, and daily procedures for a follow-up clinic in New York State are presented as one model of care. Benefits for a free-standing clinic also are discussed as well as financial considerations and directions for research.

Pediatric nurse practitioners specializing with survivors of childhood cancer

The evolution of the role of the pediatric nurse practitioner in oncology specializing in the care of childhood cancer survivors is described, with certain aspects of the role solidified or expanded and new functions added. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider and educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added. The central focus for the pediatric nurse practitioner in oncology is the survivor and family, which is extended to the clinic population and related groups by the blending of the pediatric nurse practitioner and clinical nurse specialist roles. Any role function on behalf of this clinical population should be assumed as necessary to provide comprehensive care.

Quality-of-Life Assessment: The Challenge of Incorporating Quality-of-Life and Patient-Reported Outcomes into Investigative Trials and Clinical Practice

Health professionals have come to value health-related quality of life (HRQL) as a concept for oncology. Nonetheless, HRQL is rarely found as the primary endpoint in oncology research trials even though survival differences are uncommon. Perhaps more telling is the fact that systematic HRQL evaluation is not frequently used as part of clinical decision making in the daily practice of oncology. In this chapter, practical steps are presented for selecting validated HRQL measures, and strategies are discussed to make this endpoint easier to incorporate into both clinical trials and regular practice. There are now large compendia, which are easily available via the Internet, which lists and describes HRQL measures. This access fosters acquaintance with appropriate instruments for a variety of purposes in cancer health care. With so many measures available, some guidance in choosing suitable instruments can aid in assessment and results analysis. This overview provides steps for comparing the key features and psychometric properties of HRQL measures for patients with cancer.