Expected or reference mortality rates are commonly used in the calculation of measures such as relative survival in population-based cancer survival studies and standardized mortality ratios. These expected rates are usually presented according to age, sex, and calendar year. In certain situations, stratification of expected rates by other factors is required to avoid potential bias if interest lies in quantifying measures according to such factors as, for example, socioeconomic status. If data are not available on a population level, information from a control population could be used to adjust expected rates. We have presented two approaches for adjusting expected mortality rates using information from a control population: a Poisson generalized linear model and a flexible parametric survival model. We used a control group from BCBaSe-a register-based, matched breast cancer cohort in Sweden with diagnoses between 1992 and 2012-to illustrate the two methods using socioeconomic status as a risk factor of interest. Results showed that Poisson and flexible parametric survival approaches estimate similar adjusted mortality rates according to socioeconomic status. Additional uncertainty involved in the methods to estimate stratified, expected mortality rates described in this study can be accounted for using a parametric bootstrap, but this might make little difference if using a large control population.
To examine whether the introduction of advanced diagnostic technology in maternity care has led to less variation in type of delivery between hospitals in Norway.
The Medical Birth Registry of Norway provided detailed medical information for 1.7 million deliveries from 1967 to 2005. Information about diagnostic technology was collected directly from the maternity units.
The data were analyzed using a two-level binary logistic model with Caesarean section as the outcome measure. Level one contained variables that characterized the health status of the mother and child. Hospitals are level two. A heterogeneous variance structure was specified for the hospital level, where the error variance was allowed to vary according to the following types of diagnostic technology: two-dimensional ultrasound, cardiotocography, ST waveform analysis, and fetal blood analyses.
There was a marked variation in Caesarean section rates between hospitals up to 1973. After this the variation diminished markedly. This was due to the introduction of ultrasound and cardiotocography.
Diagnostic technology reduced clinical uncertainty about the diagnosis of risk factors of the mother and child during delivery, and variation in type of delivery between hospitals was reduced accordingly. The results support the practice style hypothesis.
To ensure successful implementation of genetic screening and counselling according to patients best interests, the attitudes and motives of the public are important to consider. The aim of this study was to apply a theoretical framework in order to investigate which individual and disease characteristics might facilitate the uptake of genetic testing. A questionnaire using an extended version of the Theory of Planned Behaviour was developed to assess the predictive value of affective and cognitive expected outcomes, subjective norms, perceived control and uncertainty avoidance on the intention to undergo genetic testing. In addition to these individual characteristics, the predictive power of two disease characteristics was investigated by systematically varying the diseases fatality and penetrance (i.e. the probability of getting ill in case one is a mutation carrier). This resulted in four versions of the questionnaire which was mailed to a random sample of 2400 Norwegians. Results showed genetic test interest to be quite high, and to vary depending on the characteristics of the disease, with participants preferring tests for highly penetrant diseases. The most important individual predictor was uncertainty avoidance.
Studies of sexual risk behaviour in the context of HIV/AIDS often utilize theories of risk which are predicated on the idea of the rational actor making choices, and thus operate with a strong notion of the autonomous individual. The underlying assumption is that a well-informed individual would strive to reduce risk and therefore choose not to engage in risky behaviour in sexual encounters. Drawing on longitudinal fieldwork in Arusha town and the surrounding districts in northern Tanzania, this paper explores how people draw on a complexity of knowledge and experience when they try to reduce the likelihood of contracting HIV. It shows how the embeddedness of social relationships, and the constraints of culture restrict the possible range of options, particularly for women. The paper examines the paired concepts of risk and trust, arguing that trust in a sexual relationship is gendered in particular ways. Gender hierarchies often place women in a subordinate position to men as a result of which women have to make compromises which put their health at risk.
Several strategies have been proposed to deal with response uncertainty in contingent valuation. One approach, often applied to address issues of hypothetical bias, recodes and/or reweights responses according to stated levels of certainty but so far few analyses compare alternative recoding and reweighting strategies. We explore the choice among alternative strategies that exploit a numerical certainty scale obtained from a follow-up to the payment question in a valuation survey about a whale conservation program. Two novel variations of previously followed approaches perform best on our dataset in terms of the efficiency of estimates. The first one uses an exponential transformation of the numerical certainty scale as a weight in the willingness to pay regression. The other one is based on constructing a continuous willingness to pay variable with the highly certain "yes" and "no" original responses to the payment question as extreme values and with mid-point values that correspond to the original "don't know" responses. We find, though, that the effect of using different treatment strategies on mean willingness to pay is rarely statistically significant and we fail to detect a consistent effect on the efficiency of the estimation regardless of the strategy applied.
Unintended effects of recreational activities in protected areas are of growing concern. We used an adaptive-management framework to develop guidelines for optimally managing hiking activities to maintain desired levels of territory occupancy and reproductive success of Golden Eagles (Aquila chrysaetos) in Denali National Park (Alaska, U.S.A.). The management decision was to restrict human access (hikers) to particular nesting territories to reduce disturbance. The management objective was to minimize restrictions on hikers while maintaining reproductive performance of eagles above some specified level. We based our decision analysis on predictive models of site occupancy of eagles developed using a combination of expert opinion and data collected from 93 eagle territories over 20 years. The best predictive model showed that restricting human access to eagle territories had little effect on occupancy dynamics. However, when considering important sources of uncertainty in the models, including environmental stochasticity, imperfect detection of hares on which eagles prey, and model uncertainty, restricting access of territories to hikers improved eagle reproduction substantially. An adaptive management framework such as ours may help reduce uncertainty of the effects of hiking activities on Golden Eagles.
Pain is a common problem for patients with autosomal dominant polycystic kidney disease (ADPKD). Knowledge about patients' experience of the pain, pain management, and pain's effect on everyday life is, however, limited. In clinical practice there is a need to improve the care of these patients. To be able to do so, information about how the disease and its pain affect the patients is required. This study explores patients' experience of living with ADPKD and its pain. The findings are based on in-depth semistructured interviews. The participants were 22 patients with ADPKD. The data were transcribed and analyzed by using phenomenology. Findings showed that the patients experienced limitations in their everyday life due to inexplicable and unpredictable pain and fatigue. Also, pain management was experienced as suboptimal and pain was seldom discussed at health care appointments. Emotional distress concerning the hereditary nature of the disease was also present. Health care providers need to increase their focus on pain and pain management to reduce the disease's intrusion in patients' everyday life. Also, patients and people in the patients' immediate surroundings need to be given information and education about the disease and its pain as well as the opportunity to talk about their worries concerning heredity. By implementing the findings of the present study when meeting a patient with ADPKD, improved patient satisfaction and health-related quality of life could be accomplished.
To delineate the role of the oncology patient navigator, drawing from the experiences and descriptions of younger women with breast cancer.
Interpretive, descriptive, qualitative research design.
Participants' homes, researcher's home, and via telephone, all in Winnipeg, Manitoba, Canada.
12 women aged 50 years or younger who were diagnosed with breast cancer within the last three years.
Face-to-face semistructured interviews explored patient experiences with the cancer care system, including problems encountered, unmet needs, and opinions about the functions of the patient navigator role. The audio-recorded interviews were transcribed and data were broken down and inductively coded into four categories. Constant comparative techniques also were used during analysis.
The role of the oncology patient navigator included two facets: "Processual facets," with the subthemes assigned to me at diagnosis, managing the connection, mapping the process, practical support, and quarterbacking my entire journey; and "Personal qualities: The essentials," with the subthemes empathetic care tenor, knowing the cancer system, and understanding the medical side of breast cancer.
Despite the tremendous effort directed toward enhancing care for younger women undergoing treatment for breast cancer, gaps continue to exist. Younger women with breast cancer require a care approach providing ongoing dialogue, teaching, and emotional support from the point of diagnosis through treatment, including transitions of care within the oncology setting and back to their primary care practitioner.
Oncology nurse navigators are well positioned to provide patients with anticipatory guidance from diagnosis to the end of treatment.
Comment In: Oncol Nurs Forum. 2014 Jan 1;41(1):89-9124368242