Marie L. Suarez

Predicting Survival with the Palliative Performance Scale in a Minority-Serving Hospice and Palliative Care Program

Palliative Performance Scale (PPS) scores have shown potential for prognosticating survival in Caucasian samples, but have not been studied for prognostic value in cancer patients from minority groups. Using data obtained from a retrospective chart audit of 492 cancer patients admitted over an 18-month period to a minority-serving home-based hospice and palliative care program, we examined the relationship between PPS scores and length of survival (survival days). Patients with PPS scores of 10% to 30% had fewer survival days than those with scores of 40% and those with scores of 50% to 100% (median=6, 19, and 34 days, respectively; F=25.02, P<0.001). A PPS score of 40% serves as a reliable inclusion criterion for a study requiring two weeks for completion, whereas 50% to 100% is required for a three-week study. Findings from a predominantly minority sample are similar to those from predominantly Caucasian samples.

Reproductive Decisions in People With Sickle Cell Disease or Sickle Cell Trait

In the context of an inherited condition such as sickle cell disease (SCD), it is critical to understand how people with SCD or carriers (sickle cell trait [SCT]) face the challenges of making informed reproductive health decisions. The purpose of this analysis was to examine the beliefs, attitudes, and personal feelings of people with sickle cell disease or sickle cell trait related to making informed reproductive health decisions. Three focus groups were conducted with a total of 15 people who had either SCD or SCT. Five themes were identified: health-related issues in sickle cell disease, testing for sickle cell trait, partner choice, sharing sickle cell status with partners, and reproductive options. These findings enhance understanding of the reproductive experiences in people with SCD and SCT and provide the groundwork for developing an educational intervention focused on making informed decisions about becoming a parent.

Safety and Utility of Quantitative Sensory Testing among Adults with Sickle Cell Disease: Indicators of Neuropathic Pain?

Pain is the hallmark symptom of sickle cell disease (SCD), yet the types of pain that these patients experience, and the underlying mechanisms, have not been well characterized. The study purpose was to determine the safety and utility of a mechanical and thermal quantitative sensory testing (QST) protocol and the feasibility of utilizing neuropathic pain questionnaires among adults with SCD.

Massage for Cancer Pain: A Study with University and Hospice Collaboration

Conducting scientific research within a clinical practice area presents a variety of challenges. When the specialty area is hospice and palliative care, the collaborative task is particularly daunting. In this article, we describe an ongoing study being conducted as a partnership between the University of Illinois at Chicago and a large metropolitan hospice organization. Our research focuses on engaging patients and their caregivers in a study measuring the effects of massage on cancer pain. The purpose of this article is to describe both the lessons learned and the benefits accrued from collaboration between hospice practitioners and academic researchers. We present these process findings as guideposts for others considering end-of-life or palliative care research. Upon completion of the study in 2009, we will disseminate outcome findings in future articles.

Outpatient pain predicts subsequent one-year acute health care utilization among adults with sickle cell disease.

CONTEXT Patient demographic and clinical factors have known associations with acute health care utilization (AHCU) among patients with sickle cell disease (SCD), but it is unknown if pain measured predominantly in an outpatient setting is a predictor of future AHCU in patients with SCD. OBJECTIVES To determine whether multidimensional pain scores obtained predominantly in an outpatient setting predicted subsequent 1-year AHCU by 137 adults with SCD and whether the pain measured at a second visit also predicted AHCU. METHODS Pain data included the Composite Pain Index (CPI), a single score representative of a multidimensional pain experience (number of pain sites, intensity, quality, and pattern). Based on the distribution of AHCU events, we divided patients into three groups: 1) zero events (zero), 2) 1 to 3 events (low), or 3) 4 to 23 events (high). RESULTS The initial CPI scores differed significantly by the three groups (F(2,134) = 7.38, P = 0.001). Post hoc comparisons showed that the zero group had lower CPI scores than both the low (P < 0.01) and high (P < 0.001) groups. In multivariate overdispersed Poisson regression analyses, age and CPI scores (at both measurement times) were statistically significant predictors of utilization events. Pain intensity scores at both measurement times were significant predictors of utilization, but other pain scores (number of pain sites, quality, and pattern) were not. CONCLUSION Findings support use of outpatient CPI scores or pain intensity and age to identify at-risk young adults with SCD who are likely to benefit from improved outpatient pain management plans.

Mechanism-driven phase I translational study of trifluoperazine in adults with sickle cell disease.

Recent evidence of neuropathic pain among adults with sickle cell disease (SCD) reveals a need for adjuvant analgesic treatments for these patients. Ca(2+)/calmodulin protein kinase IIα (CaMKIIα) has a known role in neuropathic pain and trifluoperazine is a potent CaMKIIα inhibitor. The study aim was to determine trifluoperazines acute effects, primarily on adverse effects and secondarily on pain intensity reduction, in adults with SCD. In a phase I, open-label study of 6 doses of trifluoperazine (0.5, 1, 2, 5, 7.5, 10mg), we obtained 7-hourly and 24-h repeated measures of adverse effects, pain intensity, and supplemental opioid analgesics in 18 adults with SCD (18 hemoglobin SS disease, 15 women, average age 35.8±8.9 years, ranged 23-53) each of whom received a single dose. Data were analyzed with descriptive statistics. Subjects reported moderate to severe sedative effects at 7.5 and 10mg doses, respectively. Eight subjects reported 50% reduction in chronic pain without severe sedation or supplemental opioid analgesics; one of these subjects had dystonia 24.5h after the 10mg dose. The analgesic effect lasted for at least 24h in 3 subjects. Sedation resolved with caffeine and dystonia resolved with diphenhydramine. Adults with SCD experienced minimal adverse effects at doses under 10mg. In this molecular mechanism-driven translational study, trifluoperazine shows promise as an analgesic drug that is worthy of further testing in a randomized controlled study of adults with SCD starting at a dose of 1mg in repeated doses to determine long-term adverse and analgesic effects.

Extending Computer Technology to Hospice Research: Interactive Pentablet Measurement of Symptoms by Hospice Cancer Patients in Their Homes

We aimed to determine the acceptability and feasibility of a pentablet-based software program, PAINReportIt-Plus, as a means for patients with cancer in home hospice to report their symptoms and differences in acceptability by demographic variables. Of the 131 participants (mean age = 59 +/- 13, 58% women, 48.1% African American), 44% had never used a computer, but all participants easily used the computerized tool and reported an average computer acceptability score of 10.3 +/- 1.8, indicating high acceptability. Participants required an average of 19.1 +/- 9.5 minutes to complete the pain section, 9.8 +/- 6.5 minutes for the medication section, and 4.8 +/- 2.3 minutes for the symptom section. The acceptability scores were not statistically different by demographic variables but time to complete the tool differed by racial/ethnic groups. Our findings demonstrate that terminally ill patients with cancer are willing and able to utilize computer pentablet technology to record and describe their pain and other symptoms. Visibility of pain and distress is the first step necessary for the hospice team to develop a care plan for improving control of noxious symptoms.

Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.

Background:People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a Web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated. Objective:The purpose was to compare immediate posttest effects of CHOICES versus an attention-control usual care intervention (e-Book) on SCD-/SCT-related reproductive health knowledge, intention, and behavior. Methods:In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98). Their ages ranged from 18 to 35 years; 65% were women, and 94% were African American. Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention. Results:Compared with the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior, whereas the e-Book group did not show significant change in their intention, but their planned behavior differed significantly. Discussion:Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.

Pain Barriers: Psychometrics of a 13-Item Questionnaire

Background:Research instruments that effectively measure key pain constructs without needlessly taxing participants are invaluable to investigative processes. Objectives:The purposes of this series of studies were to eliminate the redundancy of the commonly used 27-item pain tool, the Barriers Questionnaire (BQ-27); retain its theoretical domains; and maintain its psychometric properties in a new shortened version. Method:The BQ-27 was reduced to 13 items using data from 259 patients with cancer by selecting the single item from each domain with the highest frequency of endorsement and including all of the items in the side effects subscale. We tested reliability of the BQ-13 using data from additional studies (n = 221 and 166) and used analysis of covariance (n = 221) to determine instrument sensitivity. Results:Confirmatory factor analysis revealed that the BQ-13 contained two constructs: pain management and side effects. The BQ-13 demonstrated internal consistency as a total scale (&agr; = .73) and stability via 4-week test-retest reliability. In addition, the BQ-13 was sensitive, F(1,218) = 7.7, p = .006, to effects of a tailored multimedia educational intervention. Discussion:The BQ-13 retained theoretical constructs, eliminated redundant items likely to contribute to floor effects, maintained adequate internal consistency and stability reliability, and had sensitivity to intervention effects.

Composite Pain Index: Reliability, Validity, and Sensitivity of a Patient-Reported Outcome for Research

OBJECTIVE A single score that represents the multidimensionality of pain would be an innovation for patient-reported outcomes. Our aim was to determine the reliability, validity, and sensitivity of the Composite Pain Index (CPI). DESIGN Methodological analysis of data from a randomized controlled, pretest/post-test education-based intervention study. SETTING The study was conducted in outpatient oncology clinics. SUBJECTS The 176 subjects had pain, were 52 ± 12.5 years on average, 63% were female, and 46% had stage IV cancers. METHODS We generated the CPI from pain location, intensity, quality, and pattern scores measured with an electronic version of Melzacks McGill Pain Questionnaire. RESULTS The internal consistency values for the individual scores comprising the CPI were adequate (0.71 baseline, 0.69 post-test). Principal components analysis extracted one factor with an eigenvalue of 2.17 with explained variance of 54% at baseline and replicated the one factor with an eigenvalue of 2.11 at post-test. The factor loadings for location, intensity, quality, and pattern were 0.65, 0.71, 0.85, and 0.71, respectively (baseline), and 0.59, 0.81, 0.84, and 0.63, respectively (post-test). The CPI was sensitive to an education intervention effect. CONCLUSIONS Findings support the CPI as a score that integrates the multidimensional pain experience in people with cancer. It could be used as a patient-reported outcome measure to quantify the complexity of pain in clinical research and population studies of cancer pain and studied for relevance in other pain populations.