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Professional massages reduce symptoms experienced by cancer patients, but are costly. A cost-effective way to include this therapy routinely in hospice care is to teach family caregivers to give massages as part of their caregiving activities. However, the burden on caregivers is unknown and might offset patient benefits or cost savings. The pilot study aim was to explore feasibility issues related to licensed massage therapists training caregivers to give massages at home, the burden of giving four daily massages to hospice patients, and feedback about the training and massage delivery. In this pretest/posttest study, caregivers completed the Caregiver Reaction Assessment (CRA), received training on standardized massage techniques from a licensed massage therapist who evaluated their proficiency the following day. Caregivers gave daily massages for 3 days and afterward completed the CRA. Then a researcher interviewed the dyad for feedback about the training and massage delivery. We used paired t tests to evaluate CRA scores and content analysis of interview data. Thirty-nine caregivers (mean age = 46 years, 69% female) completed the study. After training, all but three caregivers provided daily massages. Some caregivers reported minor logistical challenges in massage delivery and documentation, mutual satisfaction, relaxation, and tender moments ranging from laughter and story sharing to closure activities. Mean CRA scores were not significantly different pretest to posttest. We conclude that repeated-dose massages by caregivers to patients dying of cancer is feasible and is worthy of further study to determine the benefits of massage therapy, caregiver and patient experiences, and caregiver burden.

BackgroundClinical trial articles often lack detailed descriptions of the methods used to randomize participants, conceal allocation, and blind subjects and investigators to group assignment. We describe our systematic approach to implement and measure blinding success in a double-blind phase 2 randomized controlled trial testing the efficacy of acupuncture for the treatment of vulvodynia.MethodsRandomization stratified by vulvodynia subtype is managed by Research Electronic Data Capture software’s randomization module adapted to achieve complete masking of group allocation. Subject and acupuncturist blinding assessments are conducted multiple times to identify possible correlates of unblinding.ResultsAt present, 48 subjects have been randomized and completed the protocol resulting in 87 subject and 206 acupuncturist blinding assessments.DiscussionOur approach to blinding and blinding assessment has the potential to improve our understanding of unblinding over time in the presence of possible clinical improvement.

Context Unrelieved cancer pain at the end of life interferes with achieving patient-centered goals. Objective To compare effects of usual hospice care and PAINRelieveIt® on pain outcomes in patients and their lay caregivers. Methods In a five-step, stepped-wedge randomized, controlled study, 234 patients (49% male, 18% Hispanic, 51% racial minorities) and 231 lay caregivers (26% male, 20% Hispanic, 54% racial minorities) completed pre-pain/post-pain measures. They received usual hospice care with intervention components that included a summary of the patient's pain data, decision support for hospice nurses, and multimedia education tailored to the patient's and lay caregiver's misconceptions about pain. Results The intervention effect on analgesic adherence (primary outcome) was not significant. Post-test worst pain intensity was significantly higher for the experimental group, but the difference (0.70; CI = [0.12, 1.27]) was not clinically meaningful. There was nearly universal availability of prescriptions for strong opioids and adjuvant analgesics for neuropathic pain in both groups. Lay caregivers' pain misconceptions (0-5 scale) were significantly lower in the experimental group than the usual care group (mean difference controlling for baseline is 0.38; CI = [0.08, 0.67]; P = 0.01). Conclusion This randomized controlled trial was a negative trial for the primary study outcomes but positive for a secondary outcome. The trial is important for clearly demonstrating the feasibility of implementing the innovative set of interventions.

Supplemental Digital Content is Available in the Text., Objectives: To evaluate self-reported sensory pain scores of women with generalized vulvodynia (GV) and provoked vestibulodynia (PVD), characterize pain phenotypes, and assess feasibility of using the Internet for recruitment and data collection among women with vulvodynia. Methods: Descriptive online survey. Data collected using an online survey accessed via a link on the National Vulvodynia Association web site. Convenience sample, 60 women aged 18 to 45 years (mean = 32.7 ± 5.5); 50 white, 2 black/African American, 4 Hispanic/Latino, and 4 Native American/Alaskan Native, diagnosed with vulvodynia, not in menopause. Pain assessment and medication modules from PAINReportlt. Results: Women with GV (n = 35) compared to PVD (n = 25). Estimated mean pain sites (2.5 ± 1.4 vs 2.2 ± 1.0, P = 0.31), mean current pain (8.7 ± 1.4 vs 5.5 ± 4.0, P = 0.0008), worst pain (8.1 ± 1.8 vs 6.1 ± 3.6, P = 0.02), and least pain in the past 24 hours (4.4 ± 1.8 vs 2.0 ± 2.0, P < 0.0001). Average pain intensity (7.1 ± 1.2 vs 4.6 ± 2.9, P = 0.0003) on a scale of 0 to 10, mean number of neuropathic words (8.3 ± 3.6 vs 7.7 ± 5.0), and mean number of nociceptive words (6.9 ± 4 vs 7.5 ± 4.4). Nineteen (54%) women with GV compared to 9 (38%) with PVD were not satisfied with pain levels. Conclusion: Women with GV reported severe pain, whereas those with PVD reported moderate to severe pain. Pain quality descriptors may aid a clinician's decisions about whether to prescribe adjuvant drugs vs opioids to women with vulvodynia.

Vulvodynia is debilitating vulvar pain accompanied by dyspareunia (pain with sexual intercourse). Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) may represent a predisposing factor for vulvodynia given a high rate of dyspareunia in these conditions. We conducted an online survey of women with EDS or HSD to assess rates of dyspareunia and estimate rates of vulvodynia, report rates of comorbid conditions common to EDS or HSD and vulvodynia, and examine rates of conditions contributing to dyspareunia in women with EDS or HSD. Women with EDS or HSD (N = 1,146) recruited via social media were 38.2 ± 11.5 years old, primarily White (94.4%), and resided in the United States (78.5%). 63.7% of participants reported dyspareunia and 50% screened positive for vulvodynia. The rate of comorbid conditions common to EDS or HSD and vulvodynia were: irritable bowel syndrome, 6.5%; fibromyalgia, 40.0%; temporomandibular joint dysfunction, 56.4%; migraine, 6.7%; interstitial cystitis, 1.7%; and mast cell activation syndrome, 10.2%. Participants reporting dyspareunia also reported ovarian cysts, fibroids, or abdominal or pelvic scars, 47.5%; endometriosis, 26.5%; and genital lacerations, 19.3%. Women with EDS or HSD may have a higher rate of vulvodynia (50.0%) than women in the U.S. population at large (8%) and should be assessed for dyspareunia and vulvodynia.

Objectives: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges. Design: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit. Results: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients’ difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success. Conclusion: Patients’ struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.

Purpose Only a few studies have reported quantitative sensory testing (QST) reference values for healthy African Americans, and those studies are limited in sample size and age of participants. The study purpose was to characterize QST values in healthy, pain-free African American adults and older adults whose prior pain experiences and psychological status were also measured. We examined the QST values for differences by sex, age, and body test site. Patients and methods A cross-sectional sample of 124 pain-free African American adults (age 18-69 years, 49% female) completed demographic and self-reported pain, fatigue and psychosocial measures. QST was performed to obtain thermal and mechanical responses and associated pain intensity levels. Results We found thermal detection values at the anterior forearm were (29.2 °C±1.6) for cool detection (CD) and (34.5 °C±1.2) for warm detection (WD). At that site the sample had cold pain threshold (CPTh) (26.3 °C±5.0), heat pain threshold (HPTh) (37.8 °C±3.6), and mechanical pain thresholds (MPTH) (16.7±22.2 grams of force, gF). There was a significant between sex difference for WD, with women being more sensitive (q=0.027). Lower body sites were less sensitive than upper body sites across all thermal modalities (q

Background Chronic pain in adults with sickle cell disease (SCD) may be the result of altered processing in the central nervous system, as indicated by quantitative sensory testing (QST). Sensory pain quality descriptors on the McGill Pain Questionnaire (MPQ) are indicators of typical or altered pain mechanisms but have not been validated with QST-derived classifications. Objectives The specific aim of this study was to identify the sensory pain quality descriptors that are associated with the QST-derived normal or sensitized classifications. We expected to find that sets of sensory pain quality descriptors would discriminate the classifications. Methods A cross-sectional quantitative study of existing data from 186 adults of African ancestry with SCD. Variables included MPQ descriptors, patient demographic data, and QST-derived classifications. Results The participants were classified as central sensitization (n = 33), mixed sensitization (n = 23), and normal sensation. Sensory pain quality descriptors that differed statistically between mixed sensitization and central sensation compared to normal sensitization included cold (p = .01) and spreading (p = .01). Aching (p = .01) and throbbing (p = .01) differed statistically between central sensitization compared with mixed sensitization and normal sensation. Beating (p = .01) differed statistically between mixed sensitization compared with central sensitization and normal sensation. No set of sensory pain quality descriptors differed statistically between QST classifications. Discussion Our study is the first to examine the association between MPQ sensory pain quality descriptors and QST-derived classifications in adults with SCD. Our findings provide the basis for the development of a MPQ subscale with potential as a mechanism-based screening tool for neuropathic pain.

Background Women with vulvodynia, a chronic pain condition, experience vulvar pain and dyspareunia. Few studies examine the range and combination of treatment strategies that women are actually using to reduce vulvodynia. Aim To describe pain experiences and pain relief strategies of women with vulvodynia. Methods Convenience sample, 60 women with vulvodynia (median age 32.5 [interquartile range {IQR} 8.5] years; 50 white, 10 racial/ethnic minorities) completed PAINReportIt and reported use of drugs and alcohol and responded to open-ended questions. Univariate descriptive statistics and bivariate inferential tests were used to describe average pain intensity scores, alcohol use, smoking, number of pain relief strategies, and their associations. Women’s open-ended responses about their pain experiences and drug and non-drug pain relief strategies (NDPRS) were analyzed for patterns. Outcomes Our mixed methods analysis connected data from pain measures, prescribed treatments and self-reported behaviors with women’s free responses. This enabled nuanced insights into women’s vulvodynia pain experiences. Results Women’s descriptions of their pain and suffering aligned with their reported severe pain and attempts to control their pain, with a median pain intensity of 6.7 (IQR 2.0) despite use of adjuvant drugs (median 2.0 [IQR 2.0]), and opioids (median 1.0 [IQR 2.0]). 36 women (60%) used alcohol to lessen their pain. 26 women (43%) listed combining analgesics and alcohol to relieve their pain. 30 women (50%) smoked cigarettes. 54 women (90%) used ≥1 NDPRS. The mean number of NDPRS used was 2.1 ± 1.3 (range 0–6). The 5 most common NDPRS from women’s comments were herbal medicine (40%), acupuncture (27%), massage (22%), hypnosis (15%), and mental healthcare (13%). Clinical Implications Severe pain in women with vulvodynia may be a clinical indicator of those at higher risk of combining prescription pain medications with alcohol, which are all central nervous system depressants and may potentiate overdose. Strengths and Limitations This pilot study demonstrated that the mixed methods approach to help understand the complexity of vulvodynia was feasible. We identified data showing a reliance on a high-risk mix of prescriptions and alcohol to reduce vulvodynia pain and a high prevalence of cigarette smoking. However, as a pilot study, these results are considered preliminary; the sample may not be representative. Perhaps only women at the extreme end of the pain continuum participated, or women took the survey twice because identifiers were not collected. Conclusion Despite attempts to reduce pain using multiple therapies, including alcohol, women’s vulvodynia pain is severe and not controlled.

OBJECTIVES: Age group differences have been reported for pain and symptom presentations in outpatient and inpatient oncology settings, but it is unknown if these differences occur in hospice. We examined whether there were differences in pain, symptom distress, pain barriers, and comorbidities among three age groups (20–64 years, 65–84 years, and 85+) of hospice patients with cancer. MATERIALS AND METHODS: Participants were recruited from two hospices. Half were women; 49% White and 34% Black. 42% were 20–64 y, 43% 65–84 y, and 15% 85+ y. We analyzed baseline data for 230 hospice patients with cancer (enrolled 2014–2016, mean age 68.2 ±14.0, 20–100 years) from a stepped-wedge randomized controlled trial. Measures were the Average pain intensity (API, 0–10: current, least and worst pain intensity during the past 24 hours), Symptom Distress Scale (SDS, 13–65), Barriers Questionnaire-13 (BQ-13, 0–5), and comorbid conditions. Descriptive, bivariate association, and multiple regression analyses were performed. RESULTS: Mean API scores differed (p

Sickle cell disease (SCD) pain may have a neuropathic component. Adjuvant drugs used to treat neuropathic pain have not been studied for the treatment of adults with SCD. To determine the safety and feasibility of using pregabalin for chronic SCD pain. A randomized, controlled, double-blind pilot study. Based on random assignment, participants were treated with pregabalin or placebo control for 3 months with monthly follow-up visits. Participants were recruited from the University of Illinois Hospital and Health Sciences System outpatient SCD clinic. Participants/Subjects: A total of 22 participants with SCD (21 African American, 1 other) were included 16 women aged 18-82 (mean age 33.1 ± 9.9). PAINReportIt, Leeds Assessment of Neuropathic Signs and Symptoms, Neuropathic Pain Symptom Inventory, and Short Form 36 Health Survey were completed. Adverse effects were minimal. Mean scores for average pain intensity, composite pain index, and neuropathic pain revealed a reduction for pregabalin and placebo control groups. Although the between-group differences were not significant, sustained reduction in pain over time within the pregabalin group indicated promising effects of pregabalin for SCD pain. Mean quality-of-life scores increased slightly over time (representing better quality of life) in 7 of 8 domains for the pregabalin group and decreased in 4 of 8 domains for the placebo control group. Small sample size made it difficult to interpret quality-of-life findings. This pilot study provided sufficient evidence that further investigation of pregabalin's potential efficacy for treatment of chronic SCD pain in adults is warranted.

PurposeFrequencies of single nucleotide polymorphisms (SNPs) from pain related candidate genes are available for individuals with sickle cell disease (SCD). One of those genes, the arginine vasopressin receptor 1A gene (AVPR1A) and one of its SNPs, rs10877969, has been associated with pain and disability in other pain populations. In patients with SCD, clinical factors such as pain and stress have been associated with increased health care utilization, but it is not known if the presence of the AVPR1A SNP plays a role in this observation. The study purpose was to explore the relationships between rs10877969 and self-reported pain, stress, and acute care utilization events among individuals with SCD.MethodsIn a cross-sectional investigation of outpatients with SCD, participants completed PAINReportIt®, a computerized pain measure, to describe their pain experience and contributed blood or saliva samples for genetic analysis. We extracted emergency department and acute care utilization from medical records.ResultsThe SNP genotype frequencies (%) for this sample were CC 30 (28%), CT 44 (41%), TT 33 (31%). Acute care utilization and stress as an aggravator of pain were significantly associated with the rs10877969 genotype (p = .02 and p = .002, respectively). The CT genotype had the highest mean utilization and CC genotype was associated with not citing stress as a pain aggravator. Chronic pain was not associated with rs10877969 (p = .41).ConclusionThis study shows that rs10877969 is related to indicators of stress and acute pain. Further research is recommended with other measures of stress and acute pain.

Background In several studies, investigators have successfully used an internet-enabled PAINReportIt tablet to allow patients to report their pain to clinicians in real-time, but it is unknown how acceptable this technology is to patients and caregivers when used in their homes. Objective The aims of this study were to examine computer use acceptability scores of patients with end-stage cancer in hospice and their caregivers and to compare the scores for differences by age, gender, race, and computer use experience. Intervention/methods Immediately after using the tablet, 234 hospice patients and 231 caregivers independently completed the Computer Acceptability Scale (maximum scores of 14 for patients and 9 for caregivers). Results The mean (SD) Computer Acceptability score was 12.2 (1.9) for patients and 8.5 (0.9) for caregivers. Computer Acceptability scores were significantly associated with age and with previous computer use for both patients and caregivers. Conclusions This technology was highly acceptable to patients and caregivers for reporting pain in real time to their hospice nurses. Implications for practice Findings provide encouraging results that are worthy of serious consideration for patients who are in end stages of illness, including older persons and those with minimal computer experience. Increasing availability of technology can provide innovative methods for improving care provided to patients facing significant cancer-related pain even at the end of life.

Keesha L Powell-Roach,1 Yingwei Yao,2 Julienne N Rutherford,3 Judith M Schlaeger,3 Crystal L Patil,3 Marie L Suarez,4 David Shuey,4 Veronica Angulo,4 Jesus Carrasco,4 Miriam O Ezenwa,2 Roger B Fillingim,1 Zaijie J Wang,5 Robert E Molokie,5–7 Diana J Wilkie1,21Department of Community Dentistry and Behavioral Science, College of Dentistry, University of Florida, Gainesville, FL, USA; 2Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA; 3Department of Women, Children and Family Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA; 4Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA; 5Department of Biopharmaceutical Sciences, College of Pharmacy, Cancer Center, University of Illinois at Chicago, Chicago, IL, USA; 6Division of Hematology/Oncology, University of Illinois at Chicago College of Medicine, Chicago, IL, USA; 7Department of Hematology/Oncology, Jessie Brown Veteran’s Administration Medical Center, Chicago, IL, USAPurpose: Only a few studies have reported quantitative sensory testing (QST) reference values for healthy African Americans, and those studies are limited in sample size and age of participants. The study purpose was to characterize QST values in healthy, pain-free African American adults and older adults whose prior pain experiences and psychological status were also measured. We examined the QST values for differences by sex, age, and body test site.Patients and methods: A cross-sectional sample of 124 pain-free African American adults (age 18–69years, 49% female) completed demographic and self-reported pain, fatigue and psychosocial measures. QST was performed to obtain thermal and mechanical responses and associated pain intensity levels.Results: We found thermal detection values at the anterior forearm were (29.2°C±1.6) for cool detection (CD) and (34.5°C±1.2) for warm detection (WD). At that site the sample had cold pain threshold (CPTh) (26.3°C±5.0), heat pain threshold (HPTh) (37.8°C±3.6), and mechanical pain thresholds (MPTH) (16.7±22.2grams of force, gF). There was a significant between sex difference for WD, with women being more sensitive (q=0.027). Lower body sites were less sensitive than upper body sites across all thermal modalities (q

Evidence supports, but is inconclusive that sensitization contributes to chronic pain in some adults with sickle cell disease (SCD). We determined the prevalence of pain sensitization among adults with SCD pain compared with pain-free healthy adults. In a cross sectional, single session study of 186 African American outpatients with SCD pain (age 18–74 years, 59% female) and 124 healthy age, gender, and race matched control subjects (age 18–69 years, 49% female), we compared responses to standard thermal (Medoc TSA II) and mechanical stimuli (von Frey filaments). Although we observed no significant differences in thermal thresholds between controls and patients, patients with SCD had lower pain thresholds to mechanical stimuli and reported higher pain intensity scores to all thermal and mechanical stimuli at a non-painful body site. Compared with controls, about twice as many patients with SCD showed sensitization: 12% versus 23% at the anterior forearm site (P = .02), and 16% versus 32% across 3 tested sites (P = .004). Among patients with SCD, 18% exhibited some element of central sensitization. Findings indicate that persistent allodynia and hyperalgesia can be part of the SCD pain experience and should be considered when selecting therapies for SCD pain. Perspective Compared with matched healthy controls, quantitative sensory testing in adults with pain and sickle cell disease (SCD) demonstrates higher prevalence of sensitization, including central sensitization. The findings of allodynia and hyperalgesia may indicate neuropathic pain and could contribute to a paradigm shift in assessment and treatment of SCD pain.

BACKGROUND We sought to refine a screening measure for discriminating a sensitized or normal sensation pain phenotype among African American adults with sickle cell disease (SCD). OBJECTIVE To develop scoring schemes based on sensory pain quality descriptors; evaluate their performance on classifying patients with SCD who had sensitization or normal sensation, and compare with scores on the Self-report Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) and the Neuropathic Pain Symptom Inventory (NPSI). METHODS Participants completed PAINReportIt, quantitative sensory testing (QST), S-LANSS, and NPSI. Conventional binary logistic regression and least absolute shrinkage and selection operator (lasso) regression were used to obtain 2 sets of weights resulting in 2 scores: the PR-Logistic (PAINReportIt score weighted by conventional binary logistic regression coefficients) and PR-Lasso (PAINReportIt score weighted by lasso regression coefficients). Performance of the proposed scores and the existing scores were evaluated. RESULTS Lasso regression resulted in a parsimonious model with non-zero weights assigned to 2 neuropathic descriptors, cold and spreading. We found positive correlations between the PR-Lasso and other scores: S-LANSS (r = 0.22, P

Individuals with pain from sickle cell disease (SCD) are often treated for nociceptive pain, but recent findings indicate they may also have neuropathic pain. PAIN ReportIt, a computerized version of the McGill Pain Questionnaire, provides a potential subscale that is the summed number of selected neuropathic pain quality words (PR-NNP), but it lacks construct validity. The study purpose was to ascertain PR-NNP construct validity in adults with SCD and chronic pain. In an outpatient setting, 186 participants completed the PAIN ReportIt, Neuropathic Pain Symptom Inventory (NPSI), and Leeds Assessment for Neuropathic Symptoms and Signs (S-LANSS). PR-NNP was moderately correlated with NPSI ( r = .33, p < .001) and S-LANSS ( r = .40, p < .001). Regression analysis indicated that PR-NNP and pain intensity, but not a nociceptive pain subscale, were significant predictors of NPSI and S-LANSS. Findings support construct validity of PR-NNP, which may be useful as a screening tool for neuropathic pain in patients with SCD.

There is little evidence about barriers to pain management or their relationships with pain outcomes of hospice patients with cancer. The purpose of the study was to determine the barriers reported by hospice patients with cancer and their caregivers and the relationships with demographic characteristics and the patients’ pain. In this cross-sectional study, we used selected baseline data from an ongoing randomized clinical trial of patient and lay caregiver dyads receiving home-level hospice care. Participants used an Internet-enabled tablet to complete the valid, reliable measures of pain intensity, pain management barriers (Barriers Questionnaire 13 items [BQ-13]), and demographic characteristics. The responses indicate that the 2 areas of highest concern (mean scores >3) to both patients and caregivers were “pain means disease progression” and “constipation.” Additionally, 3 other areas of highest concern (mean scores >3) to caregivers were “addiction” pain medicine causing “one to do embarrassing things” and “confusion.” The mean BQ-13 scores ranged from 0.2 to 4.9 and averaged 2.6 ± 0.9 for the patients and ranged from 0.5 to 4.7 and averaged 2.7 ± 0.9 for the caregivers. Mean barrier scores remain high and were not different between patients and their caregivers or significantly related to the patients’ pain intensity. However, there were differences in race, ethnic, and hospice setting in the barrier scores. Patients with Hispanic heritage reported higher barrier scores than non-Hispanic patients. Together, these findings not only support prior research findings but also contribute new insights about pain intensity and pain barriers that are relevant to hospices serving minorities with cancer.

Aims and objectives To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education. Background There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design A descriptive cross-sectional analysis. Method At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65%) had no children compared to 42% of those with sickle-cell trait. Most young adults (85% sickle-cell disease, 82% sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell trait. Future research that advances education about how and when to communicate appropriate genetic risk information to partners and children especially for young adults with sickle-cell trait would be beneficial. Relevance to clinical practice Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.

Aim To test feasibility of a guided audio-visual relaxation intervention protocol for reducing stress and pain in adults with sickle cell disease. Background Sickle cell pain is inadequately controlled using opioids, necessitating further intervention such as guided relaxation to reduce stress and pain. Design Attention-control, randomized clinical feasibility pilot study with repeated measures. Methods Randomized to guided relaxation or control groups, all patients recruited between 2013–2014 during clinical visits, completed stress and pain measures via a Galaxy Internet-enabled Android tablet at the Baseline visit (pre/post intervention), 2-week posttest visit and also daily at home between the two visits. Experimental group patients were asked to use a guided relaxation intervention at the Baseline visit and at least once daily for 2 weeks. Control group patients engaged in a recorded sickle cell discussion at the Baseline visit. Data were analysed using linear regression with bootstrapping. Results At baseline, 27/28 of consented patients completed the study protocol. Group comparison showed that guided relaxation significantly reduced current stress and pain. At the 2-week posttest, 24/27 of patients completed the study, all of whom reported liking the study. Patients completed tablet-based measures on 71% of study days (69% in control group, 72% in experiment group). At the 2-week posttest, the experimental group had significantly lower composite pain index scores, but the two groups did not differ significantly on stress intensity. Conclusion This study protocol appears feasible. The tablet-based guided relaxation intervention shows promise for reducing sickle cell pain and warrants a larger efficacy trial. Trial registration The ClinicalTrials.gov Identifier is: NCT02501447.

Introduction: Only a few studies have reported quantitative sensory testing (QST) reference values for healthy African Americans, and those studies are limited in sample size and range of age of participants. The intent of our study was to fill a gap in the understanding of pain and somatosensory function in African Americans by generating QST values for healthy African American adults. In a large cohort of pain-free, healthy African American adults whose past pain experiences and current psychological status were known, our study aim was to determine thermal and mechanical QST values and compare those values at the anterior forearm by age and sex. We also determined the values for 5 other body sites and compared the values for differences by testing site location (upper body versus lower body). Methodology: In this cross-sectional study, 124 pain-free African American adults (age 18 to 69 years, 49% female) completed demographic and self-reported pain, fatigue and psychosocial measures. QST included obtaining thermal and mechanical responses and associated pain intensity levels. We applied the Benjamini-Hochberg procedure to adjust the p values to account for the multiple t tests. Results: We found thermal detection values at the anterior forearm were (29.2°C±1.6) for cool detection (CD) and (34.5°C±1.2) for warm detection (WD). At that site, pain thresholds were: cold pain threshold (CPTh) (26.3°C±5.0), heat pain threshold (HPTh) (37.8°C±3.6), and mechanical pain thresholds (MPTH) (16.7±22.2 grams of force, gF). There was a significant between sex difference for WD, with women being more sensitive (q=0.027). Lower body sites were less sensitive than upper body sites across all thermal modalities (q Citation Format: Keesha L. Powell-Roach, Starja Q. Booker, Yingwei Yao, Marie L. Suarez, Miriam O. Ezenwa, Roger B. Fillingim, Zaijie J. Wang, Robert E. Molokie, Diana J. Wilkie. Age and sex effects on quantitative sensory testing values in healthy African American adults [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr D044.

Objective To compare effects of a tailored multimedia education program versus usual-care on barriers to pain management of adult patients with SCD. Methods Pretest/posttest randomized controlled trial (RCT) of 228 outpatients with SCD randomized to the tablet-based PAINUCope intervention focused on barriers to pain management, pain, and analgesic adherence or selection of games (control). Outcomes were barriers to pain management, pain, and analgesic adherence. Results The barriers to pain management and pain scores did not change significantly from pretest to posttest for either condition. Changes in analgesic adherence rates from pretest to posttest were statistically significant for the intervention group (p = .046) but not for the usual care group (p = .419). The group difference was not statistically significant. Conclusions This first RCT of a tailored multimedia education intervention with adult patients with SCD did not significantly reduce the outcomes of interest compared to the control group. Findings provide insights for improving intervention delivery and reinforcement of patient behaviors. Practice implications Study redesign is warranted with modifications that include theoretical and methodological approaches and patient-centered delivery of the intervention that take advantage of recent technology developments.

African-American (AA) family caregivers may have insufficient knowledge to make informed end-of-life (EOL) treatment decisions for relatives with dementia. ACT-Plan, a community-based education intervention, was conducted to enhance knowledge of dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), tube feeding (TF), self-efficacy to make EOL treatment decisions, and intentions to make EOL care plans in advance. This study evaluated the efficacy of ACT-Plan compared to attention control. In a theoretically based, two-group, cluster-randomized controlled trial, AA caregivers were recruited from four similar Midwestern urban mega-churches randomized to experimental or control conditions. Each church enrolled 5 to 9 participants in 4 weekly 1-hour sessions in concurrent waves (355 total: ACT-Plan n = 171, control n = 184). Dementia, CPR, MV, and TF treatments were discussed in ACT-Plan classes. Attention control addressed health promotion topics. Participants completed assessments before the initial class, after the final class (Week 4), and Week 20. Mixed-effects regression analyses compared the groups, adjusting for cluster randomization and repeated measures. Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased statistically in the ACT-Plan group but not the control group, whereas intentions to administer treatments decreased (Cohen’s d: knowledge 0.41–0.79, self-efficacy 0.45–0.60, intention -0.81 to -0.54, all p < 0.03). Similar proportions of participant groups wrote or intended to write care plans (25% and 55%, respectively; all p > 0.40). While ACT-Plan treatments increased caregivers’ knowledge and self-efficacy and decreased intentions to administer treatments, more support is needed for creating written care plans.

Patients with sickle cell disease (SCD) report pain scores that appear greater than those reported in a meta-analysis for patients with cancer, but statistical comparisons of the pain scores from both populations have not been published.The goal of the study described here was to compare pain outcomes reported by outpatients with cancer or SCD.Descriptive comparative study.Outpatient oncology or sickle cell clinics.The participants were outpatients (N = 415) from three studies: (1) 106 patients with SCD, 93% African-American (referent group); (2) 140 patients with cancer, 90% Caucasian (race discordant); (3) 169 patients with cancer, 20% Caucasian, 65% African-American (race concordant).Patients completed the PAINReportIt including pain location, quality, pattern, intensity, expectation, satisfaction, and demographic questions. Analyses included the χOutpatients with SCD reported more pain location sites than the race-discordant (p .001) and race-concordant (p .001) cancer groups; higher pain quality than the race-discordant (p .001) and race-concordant (p .001) groups; and greater pain pattern scores than the race-discordant (p .001) and race-concordant (p .001) groups. The race-concordant group reported higher worst pain intensity than the SCD (p .001) and race-discordant (p = .002) groups. The three groups did not differ significantly on pain expectation (p = .06). Regarding satisfaction with pain level, there was a significant difference between the race-concordant and SCD (p = .006) groups, but not between the race-discordant and SCD (p = .12) groups or between the race-discordant and race-concordant (p = .49) groups.Outpatients with SCD reported three of four sensory pain parameters that were greater than those reported by outpatients with cancer. A better understanding of these differences is pertinent to improving pain outcomes.

Adults with sickle cell disease (SCD) have episodic crisis pain and chronic pain. Little is known about SCD chronic pain phenotypes. Quantitative sensory testing (QST) identifies the objective contribution of allodynia and hyperalgesia to chronic SCD pain phenotypes. However, self-report measures are needed to further characterize SCD chronic pain phenotypes. Our aim was to determine associations among QST-determined sensitization and anxiety, depression, and fatigue among outpatients with SCD. In a cross-sectional study, subjects (N=186, mean age 36.6 ± 11.7 years [19-74 years], 97% African American, 59% female; SC type 72% SS, 18% SC, 5% S-β thal+, 4% unknown) completed thermal and mechanical QST [heat/cold/mechanical pain thresholds and levels]) at three body sites. They completed pain intensity (API [average of pain now, least, and worst pain in the past 24 hours]) on a scale of 0 [no pain] to 10 [pain as bad as it could be] and the PROMIS anxiety (α=.90), depression (α=.94), and fatigue (α=.83) scales (higher scores represent more of the concept being measured). Descriptive analysis, Independent t-tests, and multiple linear logistic regression were conducted. QST findings indicated that 58 (31%) patients had sensitization and 126 (68%) did not have sensitization (two had missing data). Bivariate analysis for sensitized vs not sensitized groups were API, 5.3 ± 2.2 vs. 4.0 ± 2.4 (p= 0.001); anxiety, 56.2 ± 8.5 vs 52.6 ± 9.1 (p= 0.01); depression, 55.1 ± 10.2 vs 51.0 ± 9.2 (p= 0.01); and fatigue, 59.8 ± 9.1 vs 54.9 ± 8.6 (p=.001). API, fatigue, depression, and anxiety were not significant in the logistic regression model including all four as predictors of sensitization. Focus of future studies should be on factors that are associated with sensitization in adults with SCD. Supported by grant #: R01 HL124945-01 (MPIs: Wilkie, Molokie, Wang).

Interventions to assist reproductive health decision-making in populations affected by sickle cell disease (SCD) or trait (SCT) lack proven efficacy over time. Our aim was to compare effects of CHOICES, a Web-based multimedia education program on implementing informed reproductive plans, and usual care education (e-Book) on reproductive knowledge, intention, and behavior over 24 months. We randomized 234 participants with SCD (n = 138) or SCT (n = 96) (age 18-35 years, 35 % male, 94 % African American) to CHOICES and e-Book groups. Participants completed a sickle cell-specific reproductive measure before and four times after the intervention (6, 12, 18 and 24 months). Compared to the e-Book group the CHOICES group had significantly more improvement in knowledge over time (p = .004) but not intention (p = .18) or behavior (p = .69). At baseline, 114 (48.7 %) participants reported having partners who would not put the couple at risk for their children inheriting SCD. Of the 116 (49.6 %) at-risk participants, a higher poroportion of those who were in the CHOICES group chose partners that reduced their risk by the last visit than the e-Book group (p = .04). Study findings provide important insights for designing a national trial of the CHOICES intervention focusing on subjects whose partner status puts them at risk for having a child with SCD.

Research evidence shows that perceived injustice is a context-based unfair treatment that has negative influence on health outcomes. We examined the contribution of patients' perceived injustice regarding interactions with health care providers to stress and pain in adults with sickle cell disease (SCD). This study was a cross-sectional correlational pilot study. Included in the study were adults with SCD who received their care from a university-affiliated comprehensive sickle cell clinic. Participants were 52 adults whose mean age was 34 ± 11 years (minimum [min] 20 years, maximum [max] 70 years). Most of the patients were African American (n = 48, 92%) and female (n = 41, 79%). Forty-eight patients (92%) reported having a high school diploma or higher. Participants completed the perceived injustice questionnaire, perceived stress questionnaire, and the PAINReportIt, which includes questions to measure pain and demographics. We analyzed the data using the linear regression analyses. Perceived injustice from doctors was a significant predictor of perceived stress (p < .001) and pain (p = .002). Perceived injustice from nurses also was a significant predictor of perceived stress (p < .001) and pain (p = .02). The procedural, distributive, and informational domains of perceived injustice attributed to both doctors and nurses consistently predicted patients' perceived stress, but only the procedural and distributive domains of perceived injustice consistently predicted patients' pain. Findings suggest that perceived injustice was negatively associated with stress and pain in adults with SCD and warrant further investigation in a larger sample.

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 Melzack's 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.

Background Acute care units (ACUs) with focused sickle cell disease (SCD) care have been shown to effectively address pain and limit hospitalizations compared to emergency departments (ED), the reason for differences in admission rates is understudied. Our aim was compare effects of usual care for adult SCD pain in ACU and ED on opioid doses and discharge pain ratings, hospital admission rates and lengths of stay. Methods In a retrospective, comparative cohort, single academic tertiary center study, 148 adults with sickle cell pain received care in the ED, ACU or both. From the medical records we documented opioid doses, unit discharge pain ratings, hospital admission rates, and lengths of stay. Findings Pain on admission to the ED averaged 8.7 ± 1.5 and to the ACU averaged 8.0 ± 1.6. The average pain on discharge from the ED was 6.4 ± 3.0 and for the ACU was 4.5 ± 2.5. 70% of the 144 ED visits resulted in hospital admissions as compared to 37% of the 73 ACU visits. Admissions from the ED or ACU had similar inpatient lengths of stay. Significant differences between ED and ACU in first opioid dose and hourly opioid dose were noted. Conclusions Applying guidelines for higher dosing of opioids for acute painful episodes in adults with SCD in ACU was associated with improved pain outcomes and decreased hospitalizations, compared to ED. Adoption of this approach for SCD pain in ED may result in improved outcomes, including a decrease in hospital admissions.

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.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.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).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 (P0.01) and high (P0.001) 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.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.

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 trifluoperazine's 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, 10 mg), 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 10 mg doses, respectively. Eight subjects reported 50% reduction in chronic pain without severe sedation or supplemental opioid analgesics; one of these subjects had dystonia 24.5 h after the 10 mg dose. The analgesic effect lasted for at least 24 h in 3 subjects. Sedation resolved with caffeine and dystonia resolved with diphenhydramine. Adults with SCD experienced minimal adverse effects at doses under 10 mg. 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 1 mg in repeated doses to determine long-term adverse and analgesic effects.

Opioid analgesics are the mainstay therapy for managing severe pain of sickle cell disease (SCD) for the 100,000 Americans afflicted with it. However, there is limited evidence on the contribution of sociodemographic and clinical factors as predictors of opioid prescription in adult outpatients with SCD. Using baseline data from an ongoing longitudinal clinical trial, the purpose of this descriptive, cross-sectional study was to determine sociodemographic and clinical factors that predict opioid prescription calculated as Morphine Sulfate Equivalent (MSEQ) in adult outpatients with SCD. Patients (N=186, mean age 36.6±11.7 years [19-74 years], 97% African American, 59% female) enrolled between March 2015 and August 2017 completed PAINReportIt, a computerized pain measure that obtains demographic questions, weight and medication profile. Patients also completed thermal and mechanical quantitative sensory testing (QST [heat/cold/mechanical pain thresholds]) at three body sites. Descriptive statistics, frequencies, and multivariate regression analysis were computed using R statistical software. Ninety-nine percent of outpatients were on analgesics prescription, including opioids (92%), NSAIDs (64%), and adjuvants (25%). Mean scores were: average pain intensity (API) (4.5±2.4 [range 0-9]), MSEQ (62.5±105.9 [range 0-525]), and weight (159.2±41.5). Thirty-one percent of patients had pain sensitization while 69% were not sensitized. Results of the multiple regression showed that API and adjuvant prescription were positively associated with MSEQ (p

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.

The study purpose was to evaluate a computer-based questionnaire (SCKnowIQ) and CHOICES educational intervention using cognitive interviewing with childbearing-aged people with sickle cell disease (SCD) or trait (SCT). Ten control group participants completed the SCKnowIQ twice. Ten intervention group participants completed the SCKnowIQ before and after the CHOICES intervention. Most participants found the questionnaire items appropriate and responded to items as the investigators intended. Participants’ responses indicated that the information on SCD and SCT and reproductive options was understandable, balanced, important, and new to some. Internal consistency and test–retest reliability were adequate (.47 to .87) for 4 of the 6 scales, with significant within-group changes in knowledge scores for the intervention group but not for the control group. Findings show evidence for potential efficacy of the intervention, but proof of efficacy requires a larger randomized study.

This purpose of this article is to describe how we adhere to the Patient-Centered Outcomes Research Institute’s (PCORI) methodology standards relevant to the design and implementation of our PCORI-funded study, the PAIN RelieveIt Trial. We present details of the PAIN RelieveIt Trial organized by the PCORI methodology standards and components that are relevant to our study. The PAIN RelieveIt Trial adheres to four PCORI standards and 21 subsumed components. The four standards include standards for formulating research questions, standards associated with patient centeredness, standards for data integrity and rigorous analyses, and standards for preventing and handling missing data. In the past 24 months, we screened 2,837 cancer patients and their caregivers; 874 dyads were eligible; 223.5 dyads consented and provided baseline data. Only 55 patients were lost to follow-up—a 25% attrition rate. The design and implementation of the PAIN RelieveIt Trial adhered to PCORI’s methodology standards for research rigor.

To evaluate the pain coping strategies of patients with sickle cell disease (SCD) who experience healthcare injustice from either physicians or nurses during medical visits for pain management. It is unknown how patients' coping with pain relates to their experiences of healthcare injustice from physicians or nurses. This descriptive comparative study included adult outpatients with SCD who completed the PAINReportIt®, Healthcare Justice Questionnaire©, and Coping Strategies Questionnaire-SCD. Data were analyzed using independent t tests. Frequent coping strategies of patients who experienced healthcare justice from physicians were praying-hoping and from nurses were praying-hoping, calming self-statements, diverting attention, and increasing behavioral activity. In contrast, frequent coping strategies of patients who experienced healthcare injustice from physicians were catastrophizing and isolation and from nurses were isolation. Patients who experienced healthcare justice used different sets of pain coping strategies than those who experienced healthcare injustice during medical visits for pain management.

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.

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 paper, 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 is focused on engaging patients and their caregivers in a study measuring the effects of massage on cancer pain. The purpose of this paper 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 papers.

Aims To examine the relationship between pain and satisfaction in patients with sickle cell disease. Background Frequency and severity of unrelieved sickle cell pain are positively associated with mortality. Yet, information is scarce on whether sickle cell patients are satisfied with their pain level. Design A cross-sectional, correlational analysis of baseline data from a randomized clinical trial. Methods A randomized sample of adult outpatients was recruited between February 2007–March 2011. Patients completed the PAINReportIt®, containing measures of pain, satisfaction and socio-demographics. We analysed data using Kendall's rank correlations, analysis of variance, Tukey–Kramer post hoc tests, Fisher's tests and proportional odds logistic regression. Results There were statistically significant correlations between pain outcomes and satisfaction with pain level, but average pain intensity more strongly discriminated groups based on satisfaction with pain level. Among pain variables bivariately associated with patient satisfaction with pain level, only pain expectation maintained its significant relationship with satisfaction with pain level when average pain intensity was controlled. A smaller percentage of our sickle cell patients reported moderate to severe pain intensity (28%) or high composite pain index (39%), while reporting being satisfied with pain their level than reported in earlier studies using different measures and populations (70-94%). Conclusion Satisfaction with pain level was an unambiguous measure of patient satisfaction and a promising indicator of pain that did not show the paradoxical relationship between satisfaction and pain seen with past measures.

Objectives 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. Methods A convenience sample (N = 25, 18 women, mean age 38.5 ± 12.5 [20–58 years]) completed self-report pain and quality-of-life tools. Subjects also underwent testing with the TSA-II NeuroSensory Analyzer and calibrated von Frey microfilaments. Results We found that the QST protocol was safe and did not stimulate a SCD pain crisis. There was evidence of central sensitization (n = 15), peripheral sensitization (n = 1), a mix of central and peripheral sensitization (n = 8), or no sensitization (n = 1). The neuropathic pain self-report tools were feasible with evidence of construct validity; 40% of the subjects reported S-LANSS scores that were indicative of neuropathic pain and had evidence of central, peripheral or mixed sensitization. Discussion The QST protocol can be safely conducted in adults with SCD and provides evidence of central or peripheral sensitization, which is consistent with a neuropathic component to SCD pain. These findings are novel, warrant a larger confirmatory study, and indicate the need for normative QST data from African American adults and older adults.

The study purpose was to determine the predictors of watching most of a Web-based streaming video and whether data characteristics differed for those watching most or only part of the video. A convenience sample of 650 students (349 Asian Americans and 301 non-Hispanic whites) was recruited from a public university in the United States. Study participants were asked to view a 27-minute suicide awareness streaming video and to complete online questionnaires. Early data monitoring showed many, but not all, watched most of the video. We added software controls to facilitate video completion and defined times for a video completion group (≥ 26 minutes) and video non-completion (< 26 minutes) group. Compared with the video non-completion group, the video completion group included more females, undergraduates and Asian Americans, and had higher individualistic orientation and more correct manipulation check answers. The video non-completion group skipped items in a purposeful manner, showed less interest in the video, and spent less time completing questionnaires. The findings suggest that implementing software controls, evaluating missing data patterns, documenting the amount of time spent completing questionnaires, and effective manipulation check questions are essential to control potential bias in Web-based research involving college students.

Background: Pain in sickle cell disease (SCD) has been thought to be episodic, but more recent evidence has shown that individuals in this population also suffer from chronic pain likely resulting from central or peripheral neural damage (neuropathic pain). There is accumulating evidence from human and animal studies indicating potential neuropathic pain in SCD. A number of valid and reliable measures of neuropathic pain have been used to differentiate neuropathic from non-neuropathic types of pain. PAINReportIt, which takes about 10 to 18 minutes to complete, is a computer based self-report pain assessment tool based on the 1970 version of the McGill Pain Questionnaire. From PAINReportIt, a new subscale has been proposed as a measure of neuropathic pain that sums the number of neuropathic pain quality words selected. The PAINReportIt number of neuropathic pain (PR-NNP) scale, however, lacks validation in patients with SCD. Aim: The purpose of this study was to determine the construct validity for the PR-NNP by examining the associations between the PR-NNP and other valid and reliable measures of neuropathic pain (self-administered Leeds Assessment of Neuropathic Symptoms and Signs [S-LANSS] and the Neuropathic Pain Symptom Inventory [NPSI]) among adults with SCD. We hypothesized that the PR-NNP scores would be significantly correlated with S-LANSS and NPSI scores. Methods: This prospective instrument validation study was conducted in an ambulatory research setting with 79 adults diagnosed with SCD who had chronic pain within the prior 12 months (>3 on a 0-10 pain scale). The sample mean age was 36.0 ± 11.5 [ranged from 19-74 years], 63% were female, and 97% reported they were African American. The participants were asked to complete self-reported pain measures (PR-NNP, S-LANSS, NPSI, and PR-NNoc [number of nociceptive pain words]). Descriptive, correlational, and regression analyses were used. Results: Mean scores for average pain intensity, PR-NNP, NSPI, S-LANSS, and PR-NNoc appear in Table 1. Bivariate results indicated moderate correlation between the two validated measures of neuropathic pain (NPSI and S-LANSS; r= .57, p=.000). The NPSI was moderately correlated with PR-NNP (r= .43, p=.000), and weakly correlated with PR-NNoc (r=.35, p=.002). For S-LANSS, there was a moderate correlation with PR-NNP (r=0.41, p=.000) and a weak correlation with PR-NNoc (r=.30, p=.007). There was a weak correlation between average pain intensity and NPSI and S-LANSS, r=.37, p=.001 and r=.36, p=.001, respectively. Regression analysis including average pain intensity, PR-NNP, and PR-NNoc as predictors showed that controlling for PR-NNP and average pain, PR-NNoc was not significantly associated with either NPSI (p=.930) or S-LANSS (p=.731), while each point of increase in PR-NNP was associated with an increase of 1.9 (p=.004) in NPSI and of 0.8 (p=.003) in S-LANSS. The same analysis showed that a one point increase in the average pain intensity was associated with an increase of 2.7 (p=.001) in NPSI and of 1.0 (p=.001) in S-LANSS. Conclusions: Both average pain intensity and PR-NNP but not PR-NNoc have unique explanatory properties of both indicators of neuropathic pain (NPSI and S-LANSS). These findings support the construct validity of the PR-NNP as a potential screening tool for neuropathic pain in patients with SCD. Validation of PR-NNP is important for future neuropathic pain research in the sickle cell population, particularly in cases of multi-site trials, and in cases where the practitioner can detect the potential presence of neuropathic pain without use of expensive equipment. These findings are important because pain management in the sickle cell population often includes opioids, but easy and early detection of neuropathic pain could result in an opioid sparing pain management approach in this population. Disclosures No relevant conflicts of interest to declare.

Objective The Truth about Suicide video has been widely used but has never been empirically tested regarding its cultural appropriateness for Asian Americans. The purpose of the study was to determine the feasibility of using the video in a web-based suicide awareness programme for Asian American and non-Hispanic white college students. Methods A cross-sectional, comparative, web-based study was conducted with 227 Asian Americans and 204 non-Hispanic whites at a university in the Midwest region of the USA. Study participants completed a questionnaire measuring their cultural orientation and attitudes towards suicide, watched the 27 min video, completed a debriefing session and evaluated the video9s overall suitability. Results Asian Americans rated the suicide awareness video significantly lower for cultural relevance than did non-Hispanic whites (F=5.479, p=0.02). Collectivist cultural orientation was a significant predictor for cultural relevance, credibility and appeal; however, evaluation of the video9s cultural relevance was negatively affected by Asian ethnicity. Conclusions Cultural orientation and race/ethnicity should be strongly considered when web-based suicide awareness programmes are developed for college students.

10115Background: Unrelieved symptoms for cancer patients receiving hospice care could be influenced by lack of systematically collected PRO. Many hospice nurses now use tablets for care process doc...