Culturally sensitive palliative care in humanitarian action: Lessons from a critical interpretive synthesis of culture in palliative care literature.

OBJECTIVE: There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences. METHODS: A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency. RESULTS: In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves. SIGNIFICANCE OF RESULTS: This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.

A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions.

BACKGROUND: Policy and research related to transition to adult care for adolescents and young adults (AYAs) has focused primarily on patient age, disease skills and knowledge. OBJECTIVE: In an effort to broaden conceptualization of transition and move beyond isolated patient variables, a new social-ecological model of AYA readiness for transition (SMART) was developed. METHODS: SMART development was informed by related theories, literature, expert opinion and pilot data collection using a questionnaire developed to assess provider report of SMART components with 100 consecutive patients in a childhood cancer survivorship clinic. RESULTS: The literature, expert opinion and pilot data collection support the relevance of SMART components and a social-ecological conceptualization of transition. Provider report revealed that many components, representing more than age, disease knowledge and skills, related to provider plans for transferring patients. CONCLUSIONS: SMART consists of inter-related constructs of patients, parents and providers with emphasis on variables amenable to intervention. Results support SMART's broadened conceptualization of transition readiness and need for assessment of multiple stakeholders' perspectives of patient transition readiness. A companion measure of SMART, which will be able to be completed by patients, parents and providers, will be developed to target areas of intervention to facilitate optimal transition readiness. Similar research programmes to establish evidence-based transition measures and interventions are needed.

Regional chemotherapy for unresectable primary liver cancer: results of a phase II clinical trial and assessment of DCE-MRI as a biomarker of survival.

BACKGROUND: This study reports the results of hepatic arterial infusion (HAI) with floxuridine (FUDR) and dexamethasone (dex) in patients with unresectable intrahepatic cholangiocarcinoma (ICC) or hepatocellular carcinoma (HCC) and investigates dynamic contrast-enhanced magnetic resonance imaging (DCE-MRI) assessment of tumor vascularity as a biomarker of outcome. PATIENTS AND METHODS: Thirty-four unresectable patients (26 ICC and eight HCC) were treated with HAI FUDR/dex. Radiologic dynamic and pharmacokinetic parameters related to tumor perfusion were analyzed and correlated with response and survival. RESULTS: Partial responses were seen in 16 patients (47.1%); time to progression and response duration were 7.4 and 11.9 months, respectively. Median follow-up and median survival were 35 and 29.5 months, respectively; 2-year survival was 67%. DCE-MRI data showed that patients with pretreatment integrated area under the concentration curve of gadolinium contrast over 180 s (AUC 180) >34.2 mM.s had a longer median survival than those with AUC 180 <34 mM.s (35.1 versus 19.1 months, P = 0.002). Decreased volume transfer exchange between the vascular space and extracellular extravascular space (-DeltaK(trans)) and the corresponding rate constant (-Deltak(ep)) on the first post-treatment scan both predicted survival. CONCLUSIONS: In patients with unresectable primary liver cancer, HAI therapy can be effective and safe. Pretreatment and early post-treatment changes in tumor perfusion characteristics may predict treatment outcome.

Recommendations for the assessment of progression in randomised cancer treatment trials.

Progression-free survival (PFS) is an increasingly important end-point in cancer drug development. However, several concerns exist regarding the use of PFS as a basis to compare treatments. Unlike survival, the exact time of progression is unknown, so progression times might be over-estimated (or under-estimated) and, consequently, bias may be introduced when comparing treatments. In addition, the assessment of progression is subject to measurement variability which may introduce error or bias. Ideally trials with PFS as the primary end-point should be randomised and, when feasible, double-blinded. All patients eligible for study should be evaluable for the primary end-point and thus, in general, have measurable disease at baseline. Appropriate definitions should be provided in the protocol and data collected on the case-report forms, if patients with only non-measurable disease are eligible and/or clinical, or symptomatic progression are to be considered progression events for analysis. Protocol defined assessments of disease burden should be obtained at intervals that are symmetrical between arms. Independent review of imaging may be of value in randomised phase II trials and phase III trials as an auditing tool to detect possible bias.

Practical allergy (PRACTALL) report: risk assessment in anaphylaxis.

Effector mechanisms in anaphylaxis were reviewed. Current approaches to confirmation of the clinical diagnosis were discussed. Improved methods for distinguishing between allergen sensitization (which is common in the general population) and clinical risk of anaphylaxis (which is uncommon) were deliberated. Innovative techniques that will improve risk assessment in anaphylaxis in the future were described.

Imaging response assessment in oncology.

The role of imaging in the clinical setting as well as in the drug development process is expanding rapidly. Imaging technology now exists that is capable of detecting tumor response within hours. In parallel with this advance, a new array of more targeted and specific therapies are being developed. This paradigm shift in turn demands a more sophisticated way of quantifying response. There is a need to update and modify the current response evaluation criteria in solid tumors (RECIST), which rely solely on anatomic size measurement of tumors. In addition, response assessment guidelines will need to be increasingly disease-specific. Response assessment by imaging is now intimately involved with all stages of the drug development process, from exploratory drug discovery through clinical trials, as well as in clinical use. Imaging biomarkers and surrogate endpoints have the potential to speed drug approval significantly. The major funding institutions and the pharmaceutical industry are working more and more with researchers to help maintain progress in this multidisciplinary area involving oncologists, radiologists, molecular imaging specialists, medical physicists, and computer scientists.

Prospective, blinded comparison of helical CT and CT arterial portography in the assessment of hepatic metastasis from colorectal carcinoma.

OBJECTIVE: This prospective blinded comparison of helical CT and helical CT arterial portography aimed to detect liver metastasis from colorectal carcinoma. METHODS AND MATERIALS: 50 patients with colorectal carcinoma were evaluated comparing helical CT with helical CT arterial portography. Each imaging study was evaluated on a 5-point ROC scale by radiologists blinded to the other imaging findings, and the results were compared, with the surgical and pathologic findings as the gold standard. RESULTS: Of the 127 lesions found at pathology identified as metastatic colorectal cancer, helical CT correctly identified 85 (69%) and CT portography 96 (76%). When subgroups with lesions <3 cm (48 patients) and patients with maximum tumor size <3 cm (18 patients) were considered, CT portography was always better than helical CT in terms of sensitivity, specificity, positive predictive value, and negative predictive value. ROC analysis adjusting for multiple lesions per patient revealed significantly greater area under the curve (AUC) for the subgroup of lesions <3 cm (CT-AUC of 77% and CT portography AUC of 81%; P = 0.002). CONCLUSIONS: For identification of large metastases, helical CT and CT portography have similar yield. However, for detection of small liver metastases, CT portography remains superior for lesion detectability.

Blue light dose distribution and retinitis pigmentosa visual field defects: an hypothesis.

The hypothesis that retinitis pigmentosa (RP) is worsened by blue light has been raised a century ago. In order to check this hypothesis we calculated the theoretical dose distribution of light on the retinal surface. The relative dose to the different parts of the retina was calculated using a Monte-Carlo method. The changes in the peripheral isopters were calculated both degrading at a constant rate and degrading proportionally to light exposure. There is a considerably greater exposure to the superior compared to the inferior visual field. The maximum dose of UV and blue light is located on the superior field about 4mm above the macula. The dose received by the peripheral retina is markedly lower than the dose received by the central retina. The visual field defects most commonly described in RP are concentric, centered by the macula. These defects cannot, therefore, be explained by the impact of light on the retina. But some regional form of RP with a superior field defect can result from an abnormal genetically encoded sensitivity to ultraviolet and blue light.

The application of telemedicine technology to a directly observed therapy program for tuberculosis: a pilot project.

We evaluated the use of videophone technology to provide directly observed therapy (DOT) to patients with active tuberculosis. During 304 treatment doses, adherence on videophone DOT was 95%, and patient acceptance of the technology was excellent. In selected cases, the use of videophone technology can maintain a high level of adherence to DOT in a cost-effective manner.

Direct-to-consumer advertisements for prescription drugs: what are Americans being sold?

BACKGROUND: Pharmaceutical companies spent US$1.8 billion on direct-to-consumer advertisements for prescription drugs in 1999. Our aim was to establish what messages are being communicated to the public by these advertisements. METHODS: We investigated the content of advertisements, which appeared in ten magazines in the USA. We examined seven issues of each of these published between July, 1998, and July, 1999. FINDINGS: 67 advertisements appeared a total of 211 times during our study. Of these, 133 (63%) were for drugs to ameliorate symptoms, 54 (26%) to treat disease, and 23 (11%) to prevent illness. In the 67 unique advertisements, promotional techniques used included emotional appeals (45, 67%) and encouragement of consumers to consider medical causes for their experiences (26, 39%). More advertisements described the benefit of medication with vague, qualitative terms (58, 87%), than with data (9, 13%). However, half the advertisements used data to describe side-effects, typically with lists of side-effects that generally occurred infrequently. None mentioned cost. INTERPRETATION: Provision of complete information about the benefit of prescription drugs in advertisements would serve the interests of physicians and the public.

Assessing values for health: numeracy matters.

BACKGROUND: Patients' values are fundamental to decision models, cost-effectiveness analyses, and pharmacoeconomic analyses. The standard methods used to assess how patients value different health states are inherently quantitative. People without strong quantitative skills (i.e., low numeracy) may not be able to complete these tasks in a meaningful way. METHODS: To determine whether the validity of utility assessments depends on the respondent's level of numeracy, the authors conducted in-person interviews and written surveys and assessed utility for the current health for 96 women volunteers. Numeracy was measured using a previously validated 3-item scale. The authors examined the correlation between self-reported health and utility for current health (assessed using the standard gamble, time trade-off, and visual analog techniques) across levels of numeracy. For half of the women, the authors also assessed standard gamble utility for 3 imagined health states (breast cancer, heart disease, and osteoporosis) and asked how much the women feared each disease. RESULTS: Respondent ages ranged from 50 to 79 years (mean = 63), all were high school graduates, and 52% had a college or postgraduate degree. Twenty-six percent answered 0 or only 1 of the numeracy questions correctly, 37% answered 2 correctly, and 37% answered all 3 correctly. Among women with the lowest level of numeracy, the correlation between utility for current health and self-reported health was in the wrong direction (i.e., worse health valued higher than better health): for standard gamble, Spearman r=-0.16, P = 0.44;for time trade-off, Spearman r=-0.13, P=0.54. Among the most numerate women, the authors observed a fair to moderate positive correlation with both standard gamble (Spearman r=0.22, P=0.19) and time trade-off (Spearman r=0.50, P=0.002). In contrast, using the visual analog scale, the authors observed a substantial correlation in the expected direction at all levels of numeracy (Spearman r= 0.82, 0.50, and 0.60 for women answering 0-1, 2, and 3 numeracy questions, respectively; all Ps < or = 0.003). With regard to the imagined health states, the most feared disease had the lowest utility for 35% of the women with the lowest numeracy compared to 76% of the women with the highest numeracy (P=0.03). CONCLUSIONS: The validity of standard utility assessments is related to the subject's facility with numbers. Limited numeracy may be an important barrier to meaningfully assessing patients' values using the standard gamble and time trade-off techniques.

Are increasing 5-year survival rates evidence of success against cancer?

CONTEXT: Increased 5-year survival for cancer patients is generally inferred to mean that cancer treatment has improved and that fewer patients die of cancer. Increased 5-year survival, however, may also reflect changes in diagnosis: finding more people with early-stage cancer, including some who would never have become symptomatic from their cancer. OBJECTIVE: To determine the relationship over time between 5-year cancer survival and 2 other measures of cancer burden, mortality and incidence. DESIGN AND SETTING: Using population-based statistics reported by the National Cancer Institute Surveillance, Epidemiology, and End Results Program, we calculated the change in 5-year survival from 1950 to 1995 for the 20 most common solid tumor types. Using the tumor as the unit of analysis, we correlated changes in 5-year survival with changes in mortality and incidence. MAIN OUTCOME MEASURE: The association between changes in 5-year survival and changes in mortality and incidence measured using simple correlation coefficients (Pearson and Spearman). RESULTS: From 1950 to 1995, there was an increase in 5-year survival for each of the 20 tumor types. The absolute increase in 5-year survival ranged from 3% (pancreatic cancer) to 50% (prostate cancer). During the same period, mortality rates declined for 12 types of cancer and increased for the remaining 8 types. There was little correlation between the change in 5-year survival for a specific tumor and the change in tumor-related mortality (Pearson r=.00; Spearman r=-.07). On the other hand, the change in 5-year survival was positively correlated with the change in the tumor incidence rate (Pearson r=+. 49; Spearman r=+.37). CONCLUSION: Although 5-year survival is a valid measure for comparing cancer therapies in a randomized trial, our analysis shows that changes in 5-year survival over time bear little relationship to changes in cancer mortality. Instead, they appear primarily related to changing patterns of diagnosis. JAMA. 2000.

Estimating the contemporary in-hospital costs of carotid endarterectomy.

Carotid endarterectomy (CEA) is the treatment of choice for symptomatic carotid stenosis and selective asymptomatic lesions. Alternative approaches have recently been championed under the guise of increased efficacy and decreased cost. The purpose of this study was to determine the results and in-hospital costs of CEA in a university hospital in the modern era. A retrospective chart review was undertaken for all patients undergoing CEA between January 1995 and December 1997. This corresponded to the implementation of a clinical path and extended efforts toward cost reduction. Patients undergoing combined CEA and cardiopulmonary bypass were excluded (n = 3). Cost was analyzed by the hospital Office of Program Planning using TSI (Transition Systems, Inc.) software. Direct costs are related to the utilization of clinical resources and are therefore manageable by clinicians (bed, room, supplies, nursing staff, OR staff, radiology, pharmacy, etc.). Total costs additionally include administration and overhead costs not directly chargeable to patient accounts. The results of this study showed that CEA can be safely performed with brief hospital stays and reasonable hospital costs. Results of alternative interventions for the treatment of carotid stenosis should be compared to these contemporary data.

Cyclosporin-induced hypertension: incidence, pathogenesis and management.

Blood pressure increases soon after administration of immunosuppressive regimens using cyclosporin. Characteristic vascular changes lead to systemic and renal vasoconstriction. Changes in blood pressure are commonly associated with disturbed circadian regulation and may promote the rapid development of target organ injury, including intracranial haemorrhage, left ventricular hypertrophy and microangiopathic haemolysis. The mechanisms underlying this disorder are complex and include altered vascular endothelial function. Vasodilators such as prostacyclin and nitric oxide are suppressed, whereas vasoconstrictors, including endothelin, are increased. Changes in the kidney include vasoconstriction, reduced glomerular filtration and sodium retention. Effective therapy depends upon rigorous blood pressure control by administration of vasodilating agents, with attention to potential interactions with cyclosporin.

Risk communication in clinical practice: putting cancer in context.

CONTEXT: Clinicians are increasingly urged-even mandated-to help patients make informed medical decisions by paying more attention to risk counseling. For many, the role of risk counseling is new and unfamiliar. This effort is made more difficult given the practical constraints created by 15-minute visits and competing demands (e.g., patient's chief complaint and institutional needs). OBJECTIVE: We detail a three-part approach for improving risk communication, acknowledging the role of clinicians, patients, and other communicators (i.e., media or public health agencies). PROPOSED APPROACH: Office-based tools to help clinicians do more. We suggest two ways to help make up-to-date estimates of disease risk and treatment benefit easily available during office visits. We propose the development of a comprehensive population database about disease risk and treatment benefit to be created and maintained by the federal government. Educating patients. We propose "Understanding Numbers in Health" a tutorial that reviews basic concepts of probability and their application to medical studies to help people become better critical readers of health information. Guidance for communicators. Finally, we propose a writer's guide to risk communication: a set of principles to help health communicators present data to the public clearly and objectively. CONCLUSION: In addition to tools to help clinicians better communicate risk information, serious efforts to improve risk communication must go beyond the clinic. Efforts that help the public to better interpret health risk information and guide communicators to better present such information are a place to start.

Rationing decisions: from diversity to consensus.

As rationing decisions become more of an immediate reality for healthcare practitioners it is important to design mechanisms that facilitate carefully deliberated outcomes. No individual can be expected to be able to cover wide debate on their own, so an exercise has been designed that helps generate consensus decisions from diverse opinions. The exercise was piloted with two groups, an undergraduate medical class and the members of a general practice. Though the aims were different for each group, the tool was useful to both for producing the desired outcomes. Expert and non-expert knowledge were drawn upon and rationing prioritisation lists regarding funding of infertility treatment were generated. A description of the exercise and the results produced by the two groups are provided, as well as the theoretical placement for the significance of forming consensus from diversity.

Assessing outcomes, costs, and benefits of emerging technology for minimally invasive saphenous vein in situ distal arterial bypasses.

BACKGROUND: Instrumentation for a minimally invasive angioscopic in situ peripheral arterial bypass (MIAB) with catheter-directed side-branch occlusion has recently been approved for use. Despite the attractiveness of this approach (2 short incisions), benefits such as lower morbidity and shorter hospitalizations remain undocumented. To justify wide acceptance, minimally invasive surgical techniques must match conventional procedures in durability and cost while enhancing patient comfort. Often such comparisons are difficult during the implementation phase of a new procedure. OBJECTIVE: To compare the outcomes of the MIAB procedures with a concurrent group of patients undergoing conventional in situ bypass procedures. DESIGN: Retrospective review. SETTING: University medical center. PATIENT: The first 20 consecutive MIAB procedures in 19 patients performed between August 1, 1995, and July 31, 1997, were compared with 19 contemporaneous consecutive conventional in situ bypass procedures performed at the same institution. MAIN OUTCOME MEASURES: Operative time, postoperative length of stay, hospital costs, complications, primary assisted and secondary patency, limb salvage, and survival. RESULTS: The patient groups were comparable with respect to age, sex, incidence of smoking, coronary artery disease, hypertension, diabetes, renal failure, cerebrovascular disease, indication, and distal anastomosis level. The median operative time was significantly greater for the MIAB group (6.6 hours vs 5.7 hours; P=.009), and intraoperative completion arteriography more frequently showed retained arteriovenous fistulas in the MIAB group (55% vs 21%; P=.05). The median postoperative length of stay and total cost were 6.5 days and $18,000 for the MIAB group and 8 days and $27,800 for the conventional group (P > or = .05). There were no significant differences in major complications (10% in the MIAB group vs 11% in the conventional group), wound complications (10% vs 11%, respectively), primary assisted patency at 1 year (68%+/-11% vs 78%+/-10%, respectively), secondary patency at 1 year (79%+/-10% vs 88%+/-8%, respectively), limb salvage at 1 year (85%+/-10% vs 94%+/-6%, respectively), or patient survival at 1 year (89%+/-8% vs 61%+/-13%, respectively). CONCLUSION: Patients undergoing the MIAB procedure avoided lengthy vein exposure incisions without sacrificing short-term results. There was a trend toward decreased hospital stay and cost, which may be further realized as the clinical experience broadens. Although longer follow-up and larger cohorts will always be required to define durability, immediate access to outcomes and costs on small numbers of patients facilitates the early assessment of emerging technology.

Tumor involvement in hepatic veins: comparison of MR imaging and US for preoperative assessment.

PURPOSE: To compare use of magnetic resonance (MR) imaging and ultrasonography (US) for diagnosis of vascular involvement by tumor at the hepatic vein confluence. MATERIALS AND METHODS: Thirty-seven consecutive patients with tumors at the hepatic vein confluence were prospectively evaluated with spin-echo and gradient-echo MR imaging and gray-scale and Doppler US. Encasement, thrombosis, occlusion, and nonvisualization were considered to be evidence of vascular involvement. Imaging results were compared with surgical and pathologic examination findings in 27 patients who underwent resection. RESULTS: Sixteen hepatic veins (nine right, four middle, three left) were seen to be involved at surgery. Twelve of 16 involved veins were identified at MR imaging (75% sensitivity, 98% specificity, 92% positive predictive value, 94% negative predictive value). Thirteen of 16 involved veins were detected at US (81% sensitivity, 97% specificity, and 87% positive and 95% negative predictive values). There was one false-positive diagnosis of inferior vena cava involvement at both MR imaging and US. Ten patients had unresectable disease. One patient had motion artifact on MR images; in the remaining nine patients, MR imaging and US yielded identical findings at 26 of 27 hepatic vein sites. CONCLUSION: MR imaging and US provide comparable results for assessment of hepatic vein involvement by tumor.

Misrepresentation of publications by applicants for radiology fellowships: is it a problem?

OBJECTIVE: We performed this study to determine whether applicants to the body and breast/body imaging fellowship programs at our institution misrepresented their publications in their applications or curricula vitae, as has been reported recently regarding applicants for gastroenterology fellowships. We also wanted to alert program directors to this issue. MATERIALS AND METHODS: For each applicant in 1992-1995, every article cited on an application form or curriculum vitae as published or in press was cross-referenced with computer databases or the actual journals. RESULTS: Of 201 applicants, 87 (43%) listed at least one article citation (total citations, 261; mean number of citations, 3.0; maximum number of citations, 20). Of 261 citations, 39 (15%) could not be verified. Seven articles (listed by six applicants) did not appear in print 16-30 months after being listed as in press; six citations (by six applicants) put the applicant's name higher on the authorship list than was actually true; two articles (by two applicants) were not in the location cited or elsewhere; and 24 articles (by 14 applicants) were listed as appearing in journals that could not be found. The first three categories were judged as misrepresentations of publications; the fourth category was judged indeterminate for misrepresentation. CONCLUSION: A minimum of 16% (14/87) of applicants to the body and breast/body imaging fellowship programs at our institution who cited publications, or 7% of all 201 applicants in the time studied, appear to have misrepresented their publication record. Program directors should be aware of the possible means for prevention of this problem.