Pia Kirkegaard

Interprofessional education about shared decision making for patients in primary care settings

With an increasingly complex array of interventions facing healthcare professionals and patients, coupled with a potentially diverse number of professionals operating within the primary care team, the adoption of shared decision making (SDM) − with or without patients’ decision aids − in an interprofessional manner is essential to ensure the highest quality of care for patients. In this article, we propose a framework for interprofessional education about SDM targeted to primary care settings. Five areas of knowledge and skills were agreed to be essential for all relevant stakeholders for interprofessional education in SDM to be successful: understanding the concept of SDM; acquiring relevant communication skills to facilitate SDM; understanding interprofessional sensitivities; understanding the roles of different professions within the relevant primary care group; and acquiring relevant skills to implement SDM. We suggest a series of teaching methods for the aforementioned areas, using principles from adult learning.

A cluster-randomised, parallel group, controlled intervention study of genetic prostate cancer risk assessment and use of PSA tests in general practice—the ProCaRis study: study protocol

Introduction Unsystematic screening for prostate cancer (PCa) is common, causing a high number of false-positive results. Valid instruments for assessment of individual risk of PCa have been called for. A DNA-based genetic test has been tested retrospectively. The clinical use of this test needs further investigation. The primary objective is to evaluate the impact on the use of prostate-specific antigen (PSA) tests of introducing genetic PCa risk assessment in general practice. The secondary objectives are to evaluate PCa-related patient experiences, and to explore sociocultural aspects of genetic risk assessment in patients at high PCa risk. Methods and analysis The study is a cluster-randomised, controlled intervention study with practice as the unit of randomisation. We expect 140 practices to accept participation and include a total of 1244 patients in 4 months. Patients requesting a PSA test in the intervention group practices will be offered a genetic PCa risk assessment. Patients requesting a PSA test in the control group practices will be handled according to current guidelines. Data will be collected from registers, patient questionnaires and interviews. Quantitative data will be analysed according to intention-to-treat principles. Baseline characteristics will be compared between groups. Longitudinal analyses will include time in risk, and multivariable analysis will be conducted to evaluate the influence of general practitioner and patient-specific variables on future PSA testing. Interview data will be transcribed verbatim and analysed from a social-constructivist perspective. Ethics and dissemination Consent will be obtained from patients who can withdraw from the study at any time. The study provides data to the ongoing conceptual and ethical discussions about genetic risk assessment and classification of low-risk and high-risk individuals. The intervention model might be applicable to other screening areas regarding risk of cancer with identified genetic components, for example, colon cancer. The study is registered at the ClinicalTrials.gov (Identifier: NCT01739062).

Prevalence of the HOXB13 G84E mutation in Danish men undergoing radical prostatectomy and its correlations with prostate cancer risk and aggressiveness

To determine the prevalence of the HOXB13 G84E mutation (rs138213197) in Danish men with or without prostate cancer (PCa) and to investigate possible correlations between HOXB13 mutation status and clinicopathological characteristics associated with tumour aggressiveness.

Risk of cardiovascular disease? A qualitative study of risk interpretation among patients with high cholesterol.

BackgroundPrevious studies have shown the importance of paying attention to lay peoples’ interpretations of risk of disease, in order to explain health-related behavior. However, risk interpretations interplay with social context in complex ways. The objective was to explore how asymptomatic patients with high cholesterol interpret risk of cardiovascular disease.MethodsFourteen patients with high cholesterol and risk of cardiovascular disease were interviewed, and patterns across patient accounts were identified and analysed from an ethnographic approach.ResultsInformation from the general practitioner about high cholesterol and risk of cardiovascular disease was reinterpreted in everyday social life. The risk associated with fatty foods was weighed against the pleasures of social and cultural events in which this type of food was common and cherished.A positive mindset was applied as a strategy to lower the risk of having high cholesterol, but knowledge about risk was viewed as a cause of anxiety and self-absorption, and this anxiety made the body susceptible to disease, hampering the chances for healthy life.ConclusionInterpretations of high cholesterol and risk of cardiovascular disease are embedded in social relations and everyday life concerns. This should be addressed in general practice in preference-sensitive cases about risk-reducing medication.Trial registrationClinicalTrials.gov: NCT01187056

Developing a self-administered decision aid for fecal immunochemical test-based colorectal cancer screening tailored to citizens with lower educational attainment: qualitative study

Background Citizens with lower educational attainments (EA) take up colorectal cancer screening to a lesser degree, and more seldom read and understand conventional screening information than citizens with average EAs. The information needs of citizens with lower EA are diverse, however, with preferences ranging from wanting clear recommendations to seeking detailed information about screening. Decision aids have been developed to support citizens with lower EA in making informed decisions about colorectal cancer screening participation, but none embrace diverse information needs. Objective The aim of this study was to develop a self-administered decision aid for participation in fecal immunochemical test–based colorectal cancer screening. The decision aid should be tailored to citizens with lower EA and should embrace diverse information needs. Methods The Web-based decision aid was developed according to an international development framework, with specific steps for designing, alpha testing, peer reviewing, and beta testing the decision aid. In the design phase, a prototype of the decision aid was developed based on previous studies about the information needs of lower EA citizens and the International Patient Decision Aid Standards guidelines. Alpha testing was conducted using focus group interviews and email correspondence. Peer review was conducted using email correspondence. Both tests included both lower EA citizens and health care professionals. The beta testing was conducted using telephone interviews with citizens with lower EA. Data were analyzed using thematic analysis. Results The developed decision aid presented information in steps, allowing citizens to read as much or as little as wanted. Values clarification questions were included after each section of information, and answers were summarized in a “choice-indicator” on the last page, guiding the citizens toward a decision about screening participation. Statistics were presented in both natural frequencies, absolute risk formats and graphically. The citizens easily and intuitively navigated around the final version of the decision aid and stated that they felt encouraged to think about the benefits and harms of colorectal cancer screening without being overloaded with information. They found the decision aid easy to understand and the text of suitable length. The health care professionals agreed with the citizens on most parts; however, concerns were raised about the length and readability of the text. Conclusions We have developed a self-administered decision aid presenting information in steps. We involved both citizens and health care professionals to target the decision aid for citizens with lower EA. This decision aid represents a new way of communicating detailed information and may be able to enhance informed choices about colorectal cancer screening participation among citizens with lower EA.

Waiting for diagnostic colonoscopy: a qualitative exploration of screening participants’ experiences in a FIT-based colorectal cancer screening program

Background Participants in population-based screening for colorectal cancer (CRC) may experience increased anxiety immediately after a positive screening test, but research in this area is limited. The objective of this study was to explore how screening participants experience a positive test result and cope with the pre-diagnostic waiting period in a CRC screening program. Materials and methods Screening participants with a positive fecal immunochemical test (FIT) result were identified in the Danish national CRC program before they attended diagnostic colonoscopy. Sixteen screening participants were selected for an interview in their own homes, using a semi-structured interview guide. Transcribed data were analyzed thematically. Results The most prominent themes were symptom appraisal and communication strategies. Most participants attributed the positive FIT result showing blood in the stool to pre-existing non-malignant conditions but a few were very worried about the FIT result and the outcome of the colonoscopy. Communication strategies included discussions with family or friends about the positive FIT result and the upcoming colonoscopy, or containing information until the colonoscopy had provided the definitive diagnostic result. There was no apparent need for communication with health care professionals during the pre-diagnostic waiting period. Conclusion The pre-diagnostic waiting period between positive FIT result and colonoscopy in a population-based screening program may cause worry for some participants, potentially to require support, but most people consider it unconcerning. Screening providers should communicate to all screening participants in written form that negative emotional responses may occur after a positive screening result. This is particularly important in screening programs using self-sample kits without the presence of a health care professional to reassure the few participants who may experience significant anxiety.

Perceptions about screening for prostate cancer using genetic lifetime risk assessment: a qualitative study

BackgroundMost health authorities do not recommend screening for prostate cancer with PSA tests in asymptomatic patients who are not at increased risk. However, opportunistic screening for prostate cancer is still wanted by many patients and it is widely used in primary care clinics, with potential for overdiagnosis and overtreatment. Better tools for risk assessment have been called for, to better target such opportunistic screening. Our aim was to explore perceptions about prostate cancer risk and subsequent opportunistic screening among patients who were not at increased risk of prostate cancer after a first PSA test plus a genetic lifetime risk assessment.MethodsWe undertook semi-structured patient interviews with recording and verbatim transcription of interviews. Data were analysed thematically.ResultsThree themes were identified: uncertainty of the nature of prostate cancer; perceived benefits of testing; and conflicting public health recommendations. Prostate cancer was spoken of as an inescapable risk in older age. The aphorism “you die with it, not from it” was prominent in the interviews but patients focused on the benefits of testing now rather than the future risks associated with treatment relating to potential overdiagnosis. Many expressed frustration with perceived mixed messages about early detection of cancer, in which on one side men feel that they are encouraged to seek medical testing to act responsibly regarding the most common cancer disease in men, and on the other side they are asked to refrain from opportunistic testing for prostate cancer. Taken together, personal risks of prostate cancer were perceived as high in spite of a normal PSA test and a genetic lifetime risk assessment showing no increased risk.ConclusionPatients saw prostate cancer risk as high and increasing with age. They focused on the perceived benefit of early detection using PSA testing. It was also commonly acknowledged that most cases are indolent causing no symptoms and not shortening life expectancy. There was a frustration with mixed messages about the benefit of early detection and risk of overdiagnosis. These men’s genetic lifetime risk assessment showing no increased risk did not appear to influence current intentions to get PSA testing in the future.