Miriam O. Ezenwa

Pain and symptom management in palliative care and at end of life.

The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptoms are inadequately assessed and managed, even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, gaps remain. One approach to addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life.

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.

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.

ResearchTracking: Monitoring gender and ethnic minority recruitment and retention in cancer symptom studies.

Background: Recruiting and retaining participants for clinical trials, particularly women and ethnic minorities, are challenging. Few studies, however, examine gender and ethnic differences in research processes. Such information is important for findings to adequately represent the available population. Objective: The study aim was to examine study recruitment processes (referral, eligibility, consent/enrollment) and study retention (completion) for gender and ethnic differences. Methods: A descriptive comparative analysis of data from 2 randomized clinical trials focused on cancer outpatients with pain and/or fatigue. A computerized ResearchTracking software allowed documentation of recruitment and retention effort outcomes. Results: Among the 1464 referred patients, 612 (42%) were eligible for study participation. Lack of ongoing care at the study settings and lack of English skills were the main reasons for ineligibility. There were no gender differences in consent/enrollment or completion rates. Ethnic minority patients were represented proportionally to the available population (13%) and were equally willing to consent/enroll and complete both studies as their white counterparts, if they were eligible. Conclusions: Specific strategies to target language eligibility barriers are necessary to increase minority participation. Implications for Practice: Future studies could include audio-aided tools in their native language to help recruit patients with limited English skills, if the study tools can be validly translated into other languages and are equivalent to English versions. Efforts to educate and garner support of providers could improve enrollment of patients in cancer studies, especially in studies of audio- or video-recorded patient-provider interaction.

Infomarkers for transition to goals consistent with palliative care in dying patients

OBJECTIVE Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental cost of caring for the dying. The aim of our study was to identify changes in the plans of care that represent infomarkers, which signal a transition of care goals from nonpalliative care ones to those consistent with palliative care. METHOD Using an existing electronic health record database generated during a two-year longitudinal study of nine diverse medical-surgical units from four Midwest hospitals and a known group approach, we evaluated patient care episodes for 901 patients who died (mean age = 74.5 ± 14.6 years). We used ANOVA and Tukeys post-hoc tests to compare patient groups. RESULTS We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of nonpalliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n = 507), infomarkers added on the admission plan (n = 194), infomarkers added on a post-admission plan (minor transitions, n = 109), and infomarkers added and nonpalliative care diagnoses removed on a post-admission plan (major transition, n = 91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients. SIGNIFICANCE OF RESULTS EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories in order to conduct big-data research, comparative effectiveness studies, and health-services research.

Satisfied or not satisfied: pain experiences of patients with sickle cell disease

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 Kendalls rank correlations, analysis of variance, Tukey-Kramer post hoc tests, Fishers 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.

Healthcare injustice in patients with sickle cell disease

Purpose – The purpose of this paper is to detail experiences that sickle cell disease (SCD) patients associate with healthcare justice and injustice in pain control. Design/methodology/approach – A content analysis study of open-ended comments written by 31 participants who completed a 20-item healthcare injustice questionnaire-revised twice: once in reference to experiences with doctors and once in reference to experiences with nurses. Findings – Participants’ mean age was 33±10 years; most were African-Americans and women. Themes showed: the four domains of healthcare justice were represented in patients’ comments; examples of justice and injustice were provided; specific incidents and interactions with healthcare providers were memorable to patients; and setting was a factor important to healthcare experiences because expectations about services vary by setting. Research limitations/implications – Patients were self-selected. Future work will include qualitative interviews and focus groups to uncover m...