Bruce D. Rapkin

The Measurement of Symptoms in Children with Cancer

The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10-18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10-18 (45 inpatients, 115 outpatients). To confirm the instruments reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10-18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (+/- SD) number of symptoms per inpatient was 12.7 +/- 4.9 (range, 4-26), significantly more than the mean 6.5 +/- 5.7 (range, 0-28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 +/- 6.0 vs. 5. 2 +/- 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 +/- 7.0 vs. 6.8 +/- 5.5 vs. 6.8 +/- 5.0 vs. 8.0 +/- 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.

Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift

Mounting evidence for response shifts in quality of life (QOL) appraisal indicates the need to include direct measurement of the appraisal process itself as a necessary part of QOL assessment. We propose that directly assessing QOL appraisal processes will not only improve our ability to interpret QOL scores in the traditional sense, but will also yield a deeper understanding of the appraisal process in the attribution of and divergence in meaning. The published evidence for response shift is reviewed, and an assessment paradigm is proposed that includes the explicit measurement of QOL appraisal process parameters: 1) induction of a frame of reference; 2) recall and sampling of salient experiences; 3) standards of comparison used to appraise experiences; and 4) subjective algorithm used to prioritize and combine appraisals to arrive at a QOL rating. A QOL Appraisal Profile, which measures key appraisal processes, is introduced as an adjunct to existing QOL scales. The proposed theoretical model, building on the Sprangers and Schwartz (1999) model and highlighting appraisal processes, provides a fully testable theoretical treatment of QOL and change in QOL, suggesting hypothesized causal relationships and explanatory pathways for both cross-sectional and longitudinal QOL research.

Alternatives to the randomized controlled trial

Public health researchers are addressing new research questions (e.g., effects of environmental tobacco smoke, Hurricane Katrina) for which the randomized controlled trial (RCT) may not be a feasible option. Drawing on the potential outcomes framework (Rubin Causal Model) and Campbellian perspectives, we consider alternative research designs that permit relatively strong causal inferences. In randomized encouragement designs, participants are randomly invited to participate in one of the treatment conditions, but are allowed to decide whether to receive treatment. In quantitative assignment designs, treatment is assigned on the basis of a quantitative measure (e.g., need, merit, risk). In observational studies, treatment assignment is unknown and presumed to be nonrandom. Major threats to the validity of each design and statistical strategies for mitigating those threats are presented.

Cluster analysis in community research: Epistemology and practice

Cluster analysis refers to a family of methods for identifying cases with distinctive characteristics in heterogeneous samples and combining them into homogeneous groups. This approach provides a great deal of information about the types of cases and the distributions of variables in a sample. This paper considers cluster analysis as a quantitative complement to the traditional linear statistics that often characterize community psychology research. Cluster analysis emphasizes diversity rather than central tendency. This makes it a valuable tool for a wide range of familiar problems in community research. A number of these applications are considered here, including the assessment of change over time, network composition, network density, person-setting relationships, and community diversity. A Users Guide section is included, which outlines the major decisions involved in a basic cluster analyses. Despite difficulties associated with the identification of optimal cluster solutions, carefully planned, theoretically informed application of cluster analysis has much to offer community researchers.

Advancing the Science of Community-Level Interventions

Community interventions are complex social processes that need to move beyond single interventions and outcomes at individual levels of short-term change. A scientific paradigm is emerging that supports collaborative, multilevel, culturally situated community interventions aimed at creating sustainable community-level impact. This paradigm is rooted in a deep history of ecological and collaborative thinking across public health, psychology, anthropology, and other fields of social science. The new paradigm makes a number of primary assertions that affect conceptualization of health issues, intervention design, and intervention evaluation. To elaborate the paradigm and advance the science of community intervention, we offer suggestions for promoting a scientific agenda, developing collaborations among professionals and communities, and examining the culture of science.

Tobacco Use and Readiness to Quit Smoking in Low-Income HIV-Infected Persons

The study aim was to identify covariates of smoking status and readiness to quit that encompassed key sociodemographic and health status variables, health-related quality of life, drug use and unprotected sex, and tobacco use variables in a cohort of low-income persons living with HIV. We also examined the impact of HIV diagnosis on smoking cessation. The sample (N = 428) was mostly male (59%) and Black (53%) or Hispanic (30%), and had a high school education or less (87%). Mean age was 40 years. Two-thirds of participants were current smokers, 19% former smokers, and 16% never smokers. Current smokers smoked a mean of 16 cigarettes/day for 22 years; 42% were in the precontemplation stage of readiness to quit smoking, 40% were contemplators, and 18% were in preparation. Most current smokers (81%) reported receiving medical advice to quit smoking. Multivariate logistic regression analyses indicated that current smokers, compared with former smokers, were more likely to use illicit drugs, perceive a lower health risk for continued smoking, and report less pain. Current smokers, compared with nonsmokers (former and never smokers), were more likely to report greater illicit drug use in their lifetime, current illicit drug use, and less pain. A multiple linear regression indicated that greater current illicit drug use, greater emotional distress, and a lower number of quit attempts were associated with lower stage of readiness to quit smoking. These findings confirm a high prevalence of smoking among HIV-infected persons and suggest a complex interplay among drug use, pain, and emotional distress that impact smoking status and, among smokers, readiness to quit. Tobacco control programs for HIV-infected persons should build motivation to quit smoking and address salient barriers to cessation--such as comorbid drug use, emotional distress, pain, and access to and coverage for treatment--and should educate smokers regarding the HIV-specific health benefits of cessation.

Comparing Open Radical Cystectomy and Robot-assisted Laparoscopic Radical Cystectomy: A Randomized Clinical Trial

BACKGROUND Open radical cystectomy (ORC) and urinary diversion in patients with bladder cancer (BCa) are associated with significant perioperative complication risk. OBJECTIVE To compare perioperative complications between robot-assisted radical cystectomy (RARC) and ORC techniques. DESIGN, SETTING, AND PARTICIPANTS A prospective randomized controlled trial was conducted during 2010 and 2013 in BCa patients scheduled for definitive treatment by radical cystectomy (RC), pelvic lymph node dissection (PLND), and urinary diversion. Patients were randomized to ORC/PLND or RARC/PLND, both with open urinary diversion. Patients were followed for 90 d postoperatively. INTERVENTION Standard ORC or RARC with PLND; all urinary diversions were performed via an open approach. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS Primary outcomes were overall 90-d grade 2-5 complications defined by a modified Clavien system. Secondary outcomes included comparison of high-grade complications, estimated blood loss, operative time, pathologic outcomes, 3- and 6-mo patient-reported quality-of-life (QOL) outcomes, and total operative room and inpatient costs. Differences in binary outcomes were assessed with the chi-square test, with differences in continuous outcomes assessed by analysis of covariance with randomization group as covariate and, for QOL end points, baseline score. RESULTS AND LIMITATIONS The trial enrolled 124 patients, of whom 118 were randomized and underwent RC/PLND. Sixty were randomized to RARC and 58 to ORC. At 90 d, grade 2-5 complications were observed in 62% and 66% of RARC and ORC patients, respectively (95% confidence interval for difference, -21% to -13%; p=0.7). The similar rates of grade 2-5 complications at our mandated interim analysis met futility criteria; thus, early closure of the trial occurred. The RARC group had lower mean intraoperative blood loss (p=0.027) but significantly longer operative time than the ORC group (p<0.001). Pathologic variables including positive surgical margins and lymph node yields were similar. Mean hospital stay was 8 d in both arms (standard deviation, 3 and 5 d, respectively; p=0.5). Three- and 6-mo QOL outcomes were similar between arms. Cost analysis demonstrated an advantage to ORC compared with RARC. A limitation is the setting at a single high-volume, referral center; our findings may not be generalizable to all settings. CONCLUSIONS This trial failed to identify a large advantage for robot-assisted techniques over standard open surgery for patients undergoing RC/PLND and urinary diversion. Similar 90-d complication rates, hospital stay, pathologic outcomes, and 3- and 6-mo QOL outcomes were observed regardless of surgical technique. PATIENT SUMMARY Of 118 patients with bladder cancer who underwent radical cystectomy, pelvic lymph node dissection, and urinary diversion, half were randomized to open surgery and half to robot-assisted laparoscopic surgery. We compared the rate of complications within 90 d after surgery for the open group versus the robotic group and found no significant difference between the two groups. TRIAL REGISTRATION ClinicalTrials.gov identifier NCT01076387, www.clinicaltrials.gov.

Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal

The increasing evidence for response shift phenomena in quality of life (QOL) assessment points to the necessity to reconsider both the measurement model and the application of psychometric analyses. The proposed psychometric model posits that the QOL true score is always contingent upon parameters of the appraisal process. This new model calls into question existing methods for establishing the reliability and validity of QOL assessment tools and suggests several new approaches for describing the psychometric properties of these scales. Recommendations for integrating the assessment of appraisal into QOL research and clinical practice are discussed.

Housing Status and Health Care Service Utilization Among Low-income Persons with HIV/AIDS

AbstractOBJECTIVE: To examine the impact of housing status on health service utilization patterns in low-income HIV-infected adults. DESIGN: A survey of 1,445 HIV-infected Medicaid recipients in New York State between April 1996 and March 1997. MAIN RESULTS: Six percent of study participants were homeless, 24.5% were “doubled-up,” and 69.5% were stably housed. Compared with the stably housed, doubled-up and homeless participants were less likely to be seeing a physician regularly (P=.0001), and if seeing a physician, they were likely to have been doing so for a significantly shorter time (P=.02). The homeless were also less likely than either stably housed or doubled-up individuals to see the same physician or group of physicians at each ambulatory visit (P=.007). In addition, a higher proportion of the homeless had made one or more hospital visits over the prior 3 months than the nonhomeless. After multivariate adjustment, doubled-up participants were found to make more emergency room visits, the homeless were less likely to be taking prophylaxis for Pneumocystis carinii pneumonia, and both the doubled-up and the homeless were shown to use slightly more outpatient care than the stably housed. CONCLUSION: Our study documents differences in health care utilization patterns across stably housed, doubled-up, and homeless HIV-infected persons after controlling for health insurance coverage. These differences, especially those pertaining to outpatient services, suggest that the unstably housed may be receiving less adequate health care than the stably housed, and hence may be more likely to experience adverse clinical outcomes.

Keeping the Spirit of Community Partnerships Alive in the Scale Up of HIV/AIDS Prevention: Critical Reflections on the Roll Out of DEBI (Diffusion of Effective Behavioral Interventions)

DEBI, or the Diffusion of Effective Behavioral Interventions is the largest centralized effort to diffuse evidence-based prevention science to fight HIV/AIDS in the United States. DEBI seeks to ensure that the most effective science-based prevention interventions are widely implemented across the country in community-based organizations. Thus, this is a particularly timely juncture in which to critically reflect on the extent to which known principles of community collaboration have guided key processes associated with the DEBI rollout. We review the available evidence on how the dissemination of packaged interventions is necessary but not sufficient for ensuring the success of technology transfer. We consider additional principles that are vital for successful technology transfer, which were not central considerations in the rollout of the DEBI initiative. These issues are: (1) community perceptions of a top-down mode of dissemination; (2) the extent to which local innovations are being embraced, bolstered, or eliminated; and (3) contextual and methodological considerations that shape community preparedness. Consideration of these additional factors is necessary in order to effectively document, manage, and advance the science of dissemination and technology transfer in centralized prevention efforts within and outside of HIV/AIDS.