Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives

Purpose

To better understand satisfaction with care among American Indian and Alaska Native (AI/AN) persons with cancer, we explored dimensions of the provider relationship that contributed to satisfaction among caregivers and survivors who received cancer treatment in Oregon and Washington State.

Methods

Between November 2011 and April 2013, the project team interviewed 11 caregivers and 71 AI/AN cancer survivors residing in Oregon and Washington State. Interview questions aimed to elicit participant experiences with care providers and factors associated with cancer care satisfaction. Interviews were analyzed using an inductive content analysis approach in which concepts were identified and themes derived from interview data.

Results

Three overarching themes, each with two sub-themes, emerged from the data: (1) universal factors: bolstering understanding, involvement, and empathy in care; (2) minority-specific factors: incorporating culture and community into care; and (3) AI/AN-unique factors: interacting with Indian health clinics and Indian Health Service (IHS).

Conclusions

The results of our study suggest that satisfaction with care among survivors and their caregivers must be examined within the context of culture and community, particularly among minority patients. Our study demonstrates providers’ critical role in ensuring AI/AN patients emerge satisfied with cancer treatment by honoring their AI/AN-specific needs, such as respect for integration of traditional healing modalities and navigation of specialty care coordination.

     

Exposure to dust mite allergen and endotoxin in early life and asthma and atopy in childhood

BACKGROUND: There has been no longitudinal study of the relation between concurrent exposure to dust mite allergen and endotoxin in early life and asthma and atopy at school age. OBJECTIVES: To examine the relation between exposure to dust mite allergen and endotoxin at age 2 to 3 months and asthma, wheeze, and atopy in high-risk children. METHODS: Birth cohort study of 440 children with parental history of atopy in the Boston metropolitan area. RESULTS: In multivariate analyses, early exposure to high levels of dust mite allergen (> or =10 microg/g) was associated with increased risks of asthma at age 7 years (odds ratio [OR], 3.0; 95% CI, 1.1-7.9) and late-onset wheeze (OR, 5.0; 95% CI, 1.5-16.4). Exposure to endotoxin levels above the lowest quartile at age 2 to 3 months was associated with reduced odds of atopy at school age (OR, 0.5; 95% CI, 0.2-0.9). In contrast with its inverse association with atopy, endotoxin exposure in early life was associated with an increased risk of any wheeze between ages 1 and 7 years that did not change significantly with time (hazard ratio for each quartile increment in endotoxin levels, 1.23; 95% CI, 1.07-1.43). CONCLUSION: Among children at risk of atopy, early exposure to high levels of dust mite allergen is associated with increased risks of asthma and late-onset wheeze. In these children, endotoxin exposure is associated with a reduced risk of atopy but an increased risk of wheeze. CLINICAL IMPLICATIONS: Early endotoxin exposure may be a protective factor against atopy but a risk factor for wheeze in high-risk children.     

Most Current Smokers Desire Genetic Susceptibility Testing and Genetically-Efficacious Medication

The clinical translation of genetic research on nicotine dependence and treatment response requires acceptance of genetic testing by smokers. This study determines (1) which current smokers are receptive to genetic susceptibility testing for nicotine dependence and (2) to what potential extent smokers motivated to quit desire to take smoking cessation medication when hypothetical genetic results predict their pharmacogenetic medication response. Current smokers from a genetic nicotine dependence study (n?=?1306) and an ongoing smoking cessation trial (n?=?209) were surveyed on their hypothetical interest in seeing genetic testing results related to risk of nicotine dependence. Most current smokers (84.8%) reported high interest in receiving genetic testing results. Factors associated with high interest included age?≥?40 years, having a college degree, and a positive medical history (≥1 medical condition). In the ongoing smoking cessation trial, current smokers motivated to quit (n?=?474) were surveyed on their desire to take smoking cessation medication given hypothetical below or above average pharmacogenetic responses to the medication. When the hypothetical medication response changed from below to above average, significantly more smokers reported a desire to take medication (from 61.0% to 97.5%, p?<?.0001). These preliminary findings suggest that genetic testing for personalized smoking cessation treatment is well-received by smokers and that a positive hypothetical pharmacogenetic response increases desire to take smoking cessation medication among current smokers motivated to quit.

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A comparison of HIV health services utilization measures in a marginalized population: self-report versus medical records

BACKGROUND: In studies examining the use of human immunodeficiency virus (HIV) health services, researchers often use subjects' self-reported measures. Agreement between a subject's self-reports and medical records in marginalized populations is uncertain, yet important to understand, as this population is disproportionately affected by HIV. METHODS: We sought to examine agreement between self-report and medical record health care utilization measures. Using a cross-sectional study, we studied 428 unstably housed HIV-infected adults in New York City. Self-reported data were collected from Audio Computer-Assisted Self-Interviews, and medical record data from health care providers' and facilities' ambulatory medical records. Agreement for a 6-month period was compared for ambulatory visits (0, 1, >or=2), HIV medications (antiretroviral therapy, opportunistic infection prophylaxis), whether CD4 counts and viral loads were performed and their values (CD4: <200, 200-500, >500 cells/mm; Viral load: undetectable, detected). RESULTS: Agreement between self-report and medical records was 55.2% (kappa=0.12) for visits, and 68.2-79.1% (kappa=0.27-0.48) for medications. Agreement on whether laboratory tests were performed was 62.3-65.7% (kappa=0.11-0.14), whereas agreement on laboratory values was 77.6-79.3% (kappa=0.52-0.70). Most disagreement resulted in greater number of self-reported visits, use of medications, and laboratory tests compared with medical record data. CONCLUSIONS: Among HIV-infected marginalized individuals, agreement between self-report and medical records was poor for ambulatory visits, poor to fair for medication use, and poor for laboratory tests performed. However, agreement for CD4 count value was substantially better. These findings have implications on health services research in marginalized populations that relies only on self-report or medical record data. This study underscores the importance of understanding how self-reported and medical record data are correlated in marginalized populations.     

Stigma experiences in youth with facial differences: a multi-site study of adolescents and their mothers

OBJECTIVES: To describe stigma experiences of adolescents with congenital and acquired facial differences. DESIGN: Used baseline cross-sectional stigma-related responses from a four site (Seattle WA, Galveston TX, Chicago IL and Chapel Hill NC) US study enrolling 185 English speaking, US participants ages 1118 years old with facial differences (60% male; 80% congenital conditions). Closed-ended, self-administered questions drawn from the Youth Quality of Life Instrument Facial Differences Module (YQOL-FD) determined perceptions of stigmatization. Mothers (n=153) were independently asked seven matching questions. RESULTS: Frequencies report combined responses of 'sometimes,' 'fairly often,' and 'very often.' Mother's responses are in parentheses. *35% (47%) noticed people staring at their face in the past week. * 28% (43%) talked with others about how their face looks in the past month. * 29% (31%) heard others say something about their face in the past month. * 32% (32%) told peers about their facial difference in the past month. * 12% (12%) felt left out of doing things with peers because of how their face looks in the past month. * 11% (8%) got into a fight because of how their face looks in the past month. * 20% (18%) were teased about how their face looks in the past month. CONCLUSIONS: Stigma experiences were frequently reported by youth with facial differences and were correlated with independent parental report. This level of stigma suggests that media and public health interventions may be warranted to reduce discrimination, prejudice and negative adolescent social experiences related to facial difference.     

Incidence, outcomes, and cost of foot ulcers in patients with diabetes

OBJECTIVE: To determine the incidence of foot ulcers in a large cohort of patients with diabetes, the risk of developing serious complications after diagnosis, and the attributable cost of care compared with that in patients without foot ulcers. RESEARCH DESIGN AND METHODS: Retrospective cohort study of patients with diabetes in a large staff-model health maintenance organization from 1993 to 1995. Patients with diabetes were identified by algorithm using administrative, laboratory, and pharmacy records. The data were used to calculate incidence of foot ulcers, risk of osteomyelitis, amputation, and death after diagnosis of foot ulcer, and attributable costs in foot ulcer patients compared with patients without foot ulcers. RESULTS: Among 8,905 patients identified with type 1 or type 2 diabetes, 514 developed a foot ulcer over 3 years of observation (cumulative incidence 5.8%). On or after the time of diagnosis, 77 (15%) patients developed osteomyelitis and 80 (15.6%) required amputation. Survival at 3 years was 72% for the foot ulcer patients versus 87% for a group of age- and sex-matched diabetic patients without foot ulcers (P < 0.001). The attributable cost for a 40- to 65-year-old male with a new foot ulcer was $27,987 for the 2 years after diagnosis. CONCLUSIONS: The incidence of foot ulcers in this cohort of patients with diabetes was nearly 2.0% per year. For those who developed ulcers, morbidity, mortality, and excess care costs were substantial compared with those for patients without foot ulcers. The results appear to support the value of foot-ulcer prevention programs for patients with diabetes.     

Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness,families, and health care providers

This study addressed the emotional and personal needs of dying patients and the ways physicians help or hinder these needs. Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care workers, and physicians. Content analyses were performed based on grounded theory. Emotional support and personalization were 2 of the 12 domains identified as important in end-of-life care. Components of emotional support were compassion, responsiveness to emotional needs, maintaining hope and a positive attitude, and providing comfort through touch. Components of personalization were treating the whole person and not just the disease, making the patient feel unique and special, and considering the patient's social situation. Although the levels of emotional support and personalization varied, there was a minimal level, defined by compassion and treating the whole person and not just the disease, that physicians should strive to meet in caring for all dying patients. Participants also identified intermediate and advanced levels of physician behavior that provide emotional and personal support.     

Typology of alcohol users based on longitudinal patterns of drinking

Objective

Worldwide, alcohol is the most commonly used psychoactive substance. However, heterogeneity among alcohol users has been widely recognized. This paper presents a typology of alcohol users based on an implementation of idiographic methodology to examine longitudinal daily and cyclic (weekly) patterns of alcohol use at the individual level.

Method

A secondary data analysis was performed on the pre-intervention data from a large randomized control trial. A time series analysis was performed at the individual level, and a dynamic cluster analysis was employed to identify homogenous longitudinal patterns of drinking behavior at the group level. The analysis employed 180 daily observations of alcohol use in a sample of 177 alcohol users.

Results

The first order autocorrelations ranged from − .76 to .72, and seventh order autocorrelations ranged from − .27 to .79. Eight distinct profiles of alcohol users were identified, each characterized by a unique configuration of first and seventh autoregressive terms and longitudinal trajectories of alcohol use. External validity of the profiles confirmed the theoretical relevance of different patterns of alcohol use. Significant differences among the eight subtypes were found on gender, marital status, frequency of drug use, lifetime alcohol dependence, family history of alcohol use and the Short Index of Problems.

Conclusions

Our findings demonstrate that individuals can have very different temporal patterns of drinking behavior. The daily and cyclic patterns of alcohol use may be important for designing tailored interventions for problem drinkers.     

Bronchiolitis obliterans syndrome: pathogenesis and management

Over the past 15 years, lung transplantation has become an established treatment for a variety of end-stage lung diseases, but medium- and long-term success has been limited by a high incidence of bronchiolitis obliterans syndrome (BOS). Immune mediated injury has been recognized as the leading cause of BOS, and the term is synonymous with chronic rejection. But recently, nonimmune mechanisms, such as gastroesophageal reflux, have been recognized as potential culprits. The results of various treatment options have generally been disappointing, and BOS has emerged as the leading cause of late morbidity and mortality after lung transplantation.