Current measures are not sufficient: an interview-based qualitative assessment of quality of life in cutaneous T-cell lymphoma.

BACKGROUND: Cutaneous T-cell lymphoma (CTCL) negatively impacts quality of life (QoL), but existing QoL questionnaires may not comprehensively reflect patients' experience. OBJECTIVES: To identify the aspects of QoL that are most meaningful to patients with CTCL and to evaluate existing QoL instruments in this context. METHODS: Semistructured interviews were conducted between May and June 2019 using purposive sampling of patients with CTCL. Data were analysed by an inductive thematic approach using Dedoose Version 8.0.35. RESULTS: One-on-one interviews lasting a median of 43 min were completed by 18 patients [median age 62 years (interquartile range 52-70); 39% advanced-stage (IIB-IV)]. Itch was the most common clinical symptom reported (16 of 18 patients), followed by pain (12 of 18), skin breaks (11 of 18) and skin flaking (10 of 18). Eleven patients reported that their symptoms interfered with sleep, which impacted daily functioning. Patients also noted a lack of understanding of the disease in the community and felt uncertain (12 of 18), depressed (11 of 18), suicidal (four of 18) and hopeless (nine of 18). Nearly all patients (17 of 18) reported a sense of 'otherness' (not feeling 'normal' or 'like themselves'), and most patients (16 of 18) specifically mentioned concern about their physical appearance. Patients also noted substantial treatment burden. Salient patient concerns, including individual clinical symptoms, concern about appearance and problems with sleep, were not adequately or consistently represented in generic, skin-specific or CTCL-specific QoL measures. CONCLUSIONS: Incorporating the concerns and priorities that distinguish patients with CTCL from other patient populations will be of paramount importance in developing a comprehensive CTCL-specific measure of QoL that adequately captures patients' experience.

Influence of built environment on quality of life changes in African-American patients with non-metastatic breast cancer.

Research links the built environment to health outcomes, but little is known about how this affects quality of life (QOL) of African American breast cancer patients, especially those residing in disadvantaged neighborhoods. Using latent trajectory models, we examined whether the built environment using Google Street View was associated with changes in QOL over a 2-year follow-up in 228 newly diagnosed African American breast cancer patients. We measured QOL using the RAND 36-Item Health Survey subscales. After adjusting for covariates, improvement in emotional well-being and pain over time was greater for women living on streets with low-quality (vs. high-quality) sidewalks.

Accelerated partial breast irradiation compared with whole breast radiation therapy: a breast cancer cohort study measuring change in radiation side-effects severity and quality of life.

PURPOSE: Radiotherapy (RT) after breast-conserving surgery for early-stage breast cancer patients has similar survival benefits with whole breast RT (WBRT) or accelerated partial breast irradiation (APBI). However, the impact of RT type and side-effects severity on change in quality of life (QOL) is unknown. We examined changes in RT side-effects severity and QOL by RT type. METHODS: We analyzed data from a cohort of 285 newly diagnosed early-stage breast cancer patients with tumor size ≤3.0 cm and lymph node-negative disease. Patients (93 [32.6%] stage 0; 49 [17.2%] non-white; mean age = 59.3 years) completed four interviews (6 weeks, 6, 12, and 24 months) after definitive surgical treatment. We measured severity of RT side effects, fatigue and skin irritation, using a 5-point scale (1 "not at all" to 5 "all the time") and measured QOL using the Functional Assessment of Cancer Therapy-Breast (FACT-B) and RAND 36-item Health Survey Vitality subscale. Repeated-measures analysis of covariance of each outcome controlled for demographic, clinical/treatment, and psychosocial factors. RESULTS: Patients initiated RT by 6 months (113 received APBI; 172 received WBRT) and completed RT by 12 months. Patients receiving WBRT (vs. APBI) reported greater increase in fatigue and skin irritation severity from 6-week to 6-month interviews (each P < 0.001). Improvement in neither total FACT-B nor Vitality differed significantly by RT type over 2-year follow-up. CONCLUSIONS: Findings suggest that early-stage breast cancer patients can benefit from less-severe, short-term side effects of APBI with no differential impact on QOL change within 2-year follow-up.

The utility of Google Trends data to examine interest in cancer screening.

OBJECTIVES: We examined the utility of January 2004 to April 2014 Google Trends data from information searches for cancer screenings and preparations as a complement to population screening data, which are traditionally estimated through costly population-level surveys. SETTING: State-level data across the USA. PARTICIPANTS: Persons who searched for terms related to cancer screening using Google, and persons who participated in the Behavioral Risk Factor Surveillance System (BRFSS). PRIMARY AND SECONDARY OUTCOME MEASURES: (1) State-level Google Trends data, providing relative search volume (RSV) data scaled to the highest search proportion per week (RSV100) for search terms over time since 2004 and across different geographical locations. (2) RSV of new screening tests, free/low-cost screening for breast and colorectal cancer, and new preparations for colonoscopy (Prepopik). (3) State-level breast, cervical, colorectal and prostate cancer screening rates. RESULTS: Correlations between Google Trends and BRFSS data ranged from 0.55 for ever having had a colonoscopy to 0.14 for having a Pap smear within the past 3 years. Free/low-cost mammography and colonoscopy showed higher RSV during their respective cancer awareness months. RSV for Miralax remained stable, while interest in Prepopik increased over time. RSV for lung cancer screening, virtual colonoscopy and three-dimensional mammography was low. CONCLUSIONS: Google Trends data provides enormous scientific possibilities, but are not a suitable substitute for, but may complement, traditional data collection and analysis about cancer screening and related interests.

Postoperative 30-day mortality in patients undergoing surgery for colorectal cancer: development of a prognostic model using administrative claims data.

PURPOSE: To develop a prognostic model to predict 30-day mortality following colorectal cancer (CRC) surgery using the Surveillance, Epidemiology, and End Results (SEER)-Medicare-linked data and to assess whether race/ethnicity, neighborhood, and hospital characteristics influence model performance. METHODS: We included patients aged 66 years and older from the linked 2000-2005 SEER-Medicare database. Outcome included 30-day mortality, both in-hospital and following discharge. Potential prognostic factors included tumor, treatment, sociodemographic, hospital, and neighborhood characteristics (census-tract-poverty rate). We performed a multilevel logistic regression analysis to account for nesting of CRC patients within hospitals. Model performance was assessed using the area under the receiver operating characteristic curve (AUC) for discrimination and the Hosmer-Lemeshow goodness-of-fit test for calibration. RESULTS: In a model that included all prognostic factors, important predictors of 30-day mortality included age at diagnosis, cancer stage, and mode of presentation. Race/ethnicity, census-tract-poverty rate, and hospital characteristics were independently associated with 30-day mortality, but they did not influence model performance. Our SEER-Medicare model achieved moderate discrimination (AUC = 0.76), despite suboptimal calibration. CONCLUSIONS: We developed a prognostic model that included tumor, treatment, sociodemographic, hospital, and neighborhood predictors. Race/ethnicity, neighborhood, and hospital characteristics did not improve model performance compared with previously developed models.

Hospital and geographic variability in two colorectal cancer surgery outcomes: complications and mortality after complications.

BACKGROUND: The purpose of this study was to describe hospital and geographic variation in 30-day risk of surgical complications and death among colorectal cancer (CRC) patients and the extent to which patient-, hospital-, and census-tract-level characteristics increased risk of these outcomes. METHODS: We included patients at least 66 years old with first primary stage I-III CRC from the 2000-2005 National Cancer Institute's Surveillance, Epidemiology, and End Results data linked with 1999-2005 Medicare claims. A multilevel, cross-classified logistic model was used to account for nesting of patients within hospitals and within residential census tracts. Outcomes were risk of complications and death after a complication within 30 days of surgery. RESULTS: Data were analyzed for 35,946 patients undergoing surgery at 1,222 hospitals and residing in 12,187 census tracts; 27.2 % of patients developed complications, and of these 13.4 % died. Risk-adjusted variability in complications across hospitals and census tracts was similar. Variability in mortality was larger than variability in complications, across hospitals and across census tracts. Specific characteristics increased risk of complications (e.g., census-tract-poverty rate, emergency surgery, and being African-American). No hospital characteristics increased complication risk. Specific characteristics increased risk of death (e.g. census-tract-poverty rate, being diagnosed with colon (versus rectal) cancer, and emergency surgery), while hospitals with at least 500 beds showed reduced death risk. CONCLUSIONS: Large, unexplained variations exist in mortality after surgical complications in CRC across hospitals and geographic areas. The potential exists for quality improvement efforts targeted at the hospital and/or census-tract levels to prevent complications and augment hospitals' ability to reduce mortality risk.

Quality of life over time in women diagnosed with ductal carcinoma in situ, early-stage invasive breast cancer, and age-matched controls.

Little is known about quality-of-life (QOL) differences over time between incident ductal carcinoma in situ (DCIS) and early-stage invasive breast cancer (EIBC) cases as compared with same-aged women without breast cancer (controls). We prospectively recruited and interviewed 1,096 women [16.8% DCIS, 33.3% EIBC (25.7% Stage I; and 7.6% Stage IIA), 49.9% controls; mean age 58; 23.7% non-white] at mean 6.7 weeks (T1), and 6.2 (T2), 12.3 (T3), and 24.4 months (T4) after surgery (patients) or screening mammogram (controls). We tested two hypotheses: (1) DCIS patients would report lower levels of QOL compared with controls but would report similar QOL compared with EIBC patients at baseline; and (2) DCIS patients' QOL would improve during 2-year follow-up and approach levels similar to that of controls faster than EIBC patients. We tested hypothesis 1 using separate general linear regression models for each of the eight subscales on the RAND 36-item Health Survey, controlling for variables associated with at least one subscale at T1. Both DCIS and EIBC patients reported lower QOL at T1 than controls on all subscales (each P<0.05). We tested hypothesis 2 using generalized estimating equations to examine change in each QOL subscale over time across the three diagnostic groups adjusting for covariates. By T3, physical functioning, role limitations due to physical problems, energy/fatigue, and general health each differed significantly by diagnostic group at P<0.05, because of larger differences between EIBC patients and controls; but DCIS patients no longer differed significantly from controls on any of the QOL subscales. At T4, EIBC patients still reported worse physical functioning (P=0.0001) and general health (P=0.0017) than controls, possibly because of lingering treatment effects. DCIS patients' QOL was similar to that of controls two years after diagnosis, but some aspects of EIBC patients' QOL remained lower.

Improved compliance with universal precautions in the operating room following an educational intervention.

Observation of surgical personnel in four specialties (cardiothoracic, general, gynecologic, and orthopedic) in the operating room was performed prior to implementation of an educational intervention designed to improve compliance with Universal Precautions and at 1- and 2-years post-intervention. Use of protective eyewear and double gloving increased following the intervention, whereas the incidence of documented blood and body fluid exposures decreased.

Effects of hormone replacement therapy on serum lipids in elderly women. a randomized, placebo-controlled trial.

BACKGROUND: Coronary heart disease (CHD) is the leading cause of death among older women. In observational studies, the incidence of CHD has been reduced in postmenopausal women who take hormone replacement therapy (HRT). A low serum level of high-density lipoprotein (HDL) cholesterol is one of the risk factors predictive of death from CHD. OBJECTIVE: To determine the effects of HRT on serum lipid and lipoprotein levels in elderly women. DESIGN: Randomized, double-blind, placebo-controlled trial. SETTING: University research center. PARTICIPANTS: 59 sedentary women 75 years of age or older. INTERVENTION: Participants were assigned to 9 months of oral therapy with placebo or conjugated estrogens, 0.625 mg/d, plus trimonthly medroxyprogesterone acetate, 5 mg/d for 13 days. MEASUREMENTS: Serum lipid and lipoprotein levels. RESULTS: After 9 months of treatment, women in the HRT group compared with women in the placebo group had decreased low-density lipoprotein cholesterol levels (mean change [+/-SD], -0.47 +/- 0.69 mmol/L [-18.2 +/- 26.5 mg/dL] vs. -0.06 +/- 0.32 mmol/L [-2.2 +/- 12.2 mg/dL], respectively; between-group difference, 0.41 mmol/L [95% CI, 0.09 to 0.74 mmol/L], 16 mg/dL [95% CI, 3.5 to 28.5 mg/dL]; P = 0.01) and increased HDL cholesterol levels (mean change, 0.21 +/- 0.27 mmol/L [8.1 +/- 10.5 mg/dL] vs. 0.06 +/- 0.11 mmol/L [2.4 +/- 4.3 mg/dL], respectively; between-group difference, 0.15 mmol/L [CI, 0.008 to 0.29 mmol/L], 5.7 mg/dL [CI, 0.8 to 10.6 mg/dL]; P = 0.02). The observed changes were independent of age at menopause onset, baseline lipid values, body weight, waist circumference, percentage body fat, and peak aerobic power. CONCLUSIONS: In women 75 years of age or older, HRT improved the lipoprotein profile to the extent observed previously in younger postmenopausal women. Further studies are needed to evaluate whether these effects protect against CHD in this population.

Frail older women's participation in a trial of hormone replacement therapy: perceived benefits and concerns.

OBJECTIVE: The aim of this study was to identify the reasons that were important to frail older women's decisions to participate or not participate in a clinical trial of hormone replacement therapy (HRT). DESIGN: We conducted a cross-sectional study of a community-based sample of physically frail women > or = 75 years old, who were recruited to participate in an intervention trial of HRT. Participants were randomized 2:1 to either HRT or placebo, respectively. Questionnaires measured participants' reasons for participation and nonparticipants' reasons for declining. Five-point scaled responses to questionnaire items ranged from least to most important or least to most concerned. RESULTS: Sixty-nine women participated (84% white, 16% African American) in the trial. Nonparticipants (n = 41) were older, on average, than participants (83.8+/-4.2 vs. 82.2+/-3.6 years; p = 0.04). Important reasons for participation were reducing risk for Alzheimer's disease and osteoporosis, having more energy, improving self-care ability, and benefiting other women. Fear of cancer from postmenopausal estrogen was the predominant concern of 46% of nonparticipants and 78% of participants (p = 0.08). Recommendation against participation or use of estrogen by a woman's personal physician was the most prevalent additional reason given for nonparticipation. CONCLUSIONS: Disease prevention and improving self-care abilities were most important to participants. Fear of cancer was not a greater concern for nonparticipants than for participants. The role of the physician in older women's decision-making about use of postmenopausal estrogen seems to be important.

Sources influencing patients in their HIV medication decisions.

The authors surveyed 202 patients (54.5% male; 62.4% African American) enrolled at St. Louis HIV clinics to identify the importance of various sources of influence in their HIV medication decisions. Physicians were the most important source for 122 (60.4%) respondents, whereas prayer was most important for 24 respondents (11.9%). In multivariate tests controlling for CD4 counts, Caucasian men were more likely than Caucasian women and African Americans of both genders to select a physician as the most important source. African Americans were more likely than Caucasians to mention prayer as the most important source. Caucasians and those rating physicians as the most important source were more likely to be using antiretroviral medications. Respondents identified multiple important influences-hence the potential for conflicting messages about HIV medications. These findings have implications for health education practices and behavioral research in the medical setting.

Disclosure of HIV status to medical providers: differences by gender, "race," and immune function.

OBJECTIVE: The authors used data from a larger study to explore differences by gender, self-reported racial identification, and immune function in disclosure of HIV-positive serostatus to medical providers (dentists, family doctors, and emergency room [ER] and obstetrics-gynecology [ob/gyn] providers). METHOD: The authors analyzed interview responses from a convenience sample of African American and white men and women receiving HIV medical care at urban hospitals and clinics in St. Louis. Missouri. RESULTS: Of 179 respondents using at least one of three types of providers, 124 (69%) disclosed their HIV status to all applicable types of providers, 39 (22%) disclosed to only one or two types of providers, and 16 (9%) did not disclose to any of these types of providers. "Race" and CD4 count, but not gender, were independently associated with disclosure to dentists, family doctors, and ER providers in multivariate logistic regression analyses. CONCLUSIONS: Differences in disclosure rates, especially among patients who may be asymptomatic, suggest a need for public health education of both medical providers and patients with HIV.

Women with HIV: conflicts and synergy of prayer within the realm of medical care.

In a recent survey of women with HIV, prayer was mentioned as a very important source in decision making about HIV antiretroviral therapy. As a follow-up to this finding, we conducted in-depth interviews with 51 women attending a comprehensive HIV care center to better understand the role of prayer in their decisions about taking antiretroviral therapy. The sample consisted predominately of African American (80%) women with a median age of 31 years from St. Louis and surrounding areas. Forty-seven (92%) reported that prayer was an important source for HIV medication decision making, with 30 (59%) considering prayer more important than the physician. Twenty-nine (57%) perceived a qualitative difference between prayer and the physician, which created a sense of conflict for some. Thirty (59%) wished that the physician knew more about the role of prayer in their lives. Our findings reveal compelling issues: (a) the willingness of the women to talk about prayer as a resource and its importance in HIV disease management, (b) the roles that prayer and the physician play in HIV medication decision-making, and (c) ways prayer can be addressed in a medical setting.

Evaluation of a preclinical, educational and skills-training program to improve students' use of blood and body fluid precautions: one-year follow-up.

BACKGROUND: Little is known about long-term improvements in medical students' knowledge, attitudes, and use of blood and body fluid precautions following preclinical training. METHODS: We evaluated an educational and skills-training program emphasizing double gloving for high-risk surgical procedures. Baseline surveys measuring knowledge, attitudes, and readiness to use specific precautions were completed by second-year (experimental) students before skills training and by third-year students (control) after their first clinical year. Follow-up surveys were completed 1 year later. Use of double gloves and protective eyewear during surgery clerkships was observed at baseline and follow-up. RESULTS: Of 149 students returning both surveys, the experimental group (n = 91) showed improvements in attitudes toward double gloving (P = 0.038) and use of double gloves during surgery at follow-up (relative risk = 1.95, 95% confidence interval = 1.06, 3.59). They expressed better attitudes toward (P = 0.003) and greater readiness to use (P = 0. 020) double gloves compared with controls at follow-up. They expressed better attitudes toward (P = 0.002) and greater readiness to use (P = 0.001) double gloves compared with controls when each had completed their first clinical year. CONCLUSION: The intervention was associated with improved attitudes toward and use of double gloves during surgery. The experimental group also expressed better attitudes and readiness to use double gloves compared with controls at follow-up.

Compliance with Universal Precautions among emergency department personnel: implications for prevention programs.

BACKGROUND: We developed a 50-item questionnaire to assess emergency department (ED) staff members' knowledge of bloodborne pathogen transmission, compliance with Universal Precautions, and the use of personal protective equipment. METHOD: A questionnaire was administered to 103 ED staff members including physicians, nurses, and technicians at Barnes-Jewish Hospital in St Louis, a Level-I trauma center. RESULTS: ED personnel had inadequate knowledge of bloodborne pathogen infection risk, underreported exposures, and underused personal protection equipment during trauma cases. CONCLUSION: Further educational interventions for ED personnel are needed to increase their compliance with Universal Precautions.

Use of personal protective equipment and operating room behaviors in four surgical subspecialties: personal protective equipment and behaviors in surgery.

OBJECTIVE: To evaluate Universal Precautions (UP) compliance in the operating room (OR). DESIGN: Prospective observational cohort. Trained observers recorded information about (1) personal protective equipment used by OR staff; (2) eyewear, glove, or gown breaks; (3) the nature of sharps transfers; (4) risk-taking behaviors of the OR staff; and (5) needlestick injuries and other blood and body-fluid exposures. SETTING: Barnes-Jewish Hospital, a 1,000-bed, tertiary-care hospital affiliated with Washington University School of Medicine, St Louis, Missouri. PARTICIPANTS: OR personnel in four surgical specialties (gynecologic, orthopedic, cardiothoracic, and general). Procedures eligible for the study were selected randomly. Hand surgery and procedures requiring no or a very small incision (eg, arthroscopy, laparoscopy) were excluded. RESULTS: A total of 597 healthcare workers' procedures were observed in 76 surgical cases (200 hours). Of the 597 healthcare workers, 32% wore regular glasses, and 24% used no eye protection. Scrub nurses and medical students were more likely than other healthcare workers to wear goggles. Only 28% of healthcare workers double gloved, with orthopedic surgery personnel being the most compliant. Sharps passages were not announced in 91% of the surgical procedures. In 65 cases (86%), sharps were adjusted manually. Three percutaneous and 14 cutaneous exposures occurred, for a total exposure rate of 22%. CONCLUSION: OR personnel had poor compliance with UP. Although there was significant variation in use of personal protective equipment between groups, the total exposure rate was high (22%), indicating the need for further training and reinforcement of UP to reduce occupational exposures.

Factors associated with HIV-infected patients' recognition and use of HIV medications.

In 1996, we interviewed 224 HIV-infected patients (54% men, 63% African American) receiving HIV medical care in St. Louis, Missouri about their recognition, prior use, and current use of HIV medications. Of 221 respondents who had heard of at least one antiretroviral drug, only 2 respondents reported they had never taken antiretroviral drugs. Multivariate logistic regression among respondents with CD4 counts <500 cells/mm3 identified sociodemographic variables (gender, race, education, and site of care) that were significantly (p < .05) associated with never having heard of, never having used, and not currently using specific antiretroviral drugs. African Americans in general, African American women, or African Americans with 12 years of schooling were more likely never to have heard of didanosine (ddI)/zalcitabine (ddC), stavudine (d4T), lamivudine (3TC), protease inhibitors, and non-nucleoside reverse transcriptase inhibitors (NNRTIs). In addition, women were more likely never to have heard of protease inhibitors, and respondents with < or = 12 years of schooling were more likely never to have heard of NNRTIs. African Americans were more likely never to have taken azidothymidine (AZT), and African American women were more likely never to have taken 3TC and protease inhibitors. Sociodemographic variables were not significantly associated with current use of specific antiretroviral drugs among those with CD4 levels <500 cells/mm3, nor with recognition, prior use, or current use of Pneumocystis carinii pneumonia prophylaxis among those with CD4 counts <200 cells/mm3. Findings indicate that, even among patients receiving HIV care, African Americans, women, and those with < or = 12 years of schooling were more likely never to have heard of and never to have used various specific antiretroviral medications. More focused efforts are needed to help patients become aware of available antiretroviral drugs and to encourage greater use of these drugs among all patients for whom the drugs are indicated.

Does clinical experience affect medical students' knowledge, attitudes, and compliance with universal precautions?

OBJECTIVE: To investigate differences in second-, third-, and fourth-year medical students' knowledge of bloodborne pathogen exposure risks, as well as their attitudes toward, and intentions to comply with, Universal Precautions (UP). DESIGN: Cross-sectional survey. PARTICIPANTS AND SETTING: Surveys about students' knowledge, attitudes, and intentions to comply with UP were completed by 111 second-year (preclinical), 80 third-year, and 60 fourth-year medical students at Washington University School of Medicine in the spring of 1996. RESULTS: Preclinical students knew more than clinical students about the efficacy of hepatitis B vaccine, use of antiretroviral therapy after occupational exposure to human immunodeficiency virus, and nonvaccinated healthcare workers' risk of infection from needlestick injuries (P<.001). Students' perceived risk of occupational exposure to bloodborne pathogens and attitudes toward hepatitis B vaccine did not differ, but preclinical students agreed more strongly that they should double glove for all invasive procedures with sharps (P<.001). Clinical students agreed more strongly with reporting only high-risk needlestick injuries (P=.057) and with rationalizations against using UP (P=.008). Preclinical students more frequently reported contemplating or preparing to comply with double gloving, wearing protective eyewear, reporting all exposures, and safely disposing of sharps, whereas students with clinical experience were more likely to report compliance. Clinical students also were more likely to report having "no plans" to practice the first three of these precautions (P<.001). CONCLUSIONS: Differences in knowledge, attitudes, and intentions to comply with UP between students with and without clinical experience may have important implications for the timing and content of interventions designed to improve compliance with UP.

Healthcare workers' attitudes and compliance with universal precautions: gender, occupation, and specialty differences.

We describe variations in healthcare workers' attitudes toward double gloving and reporting needlesticks, and in their readiness to comply with double gloving and hepatitis B vaccine. Differences related to occupation, specialty, and gender have implications for the need to tailor interventions for specific groups of healthcare workers to improve compliance with Universal Precautions.