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Abstract Background Information is essential in healthcare. Recording, handling and sharing healthcare information is important in order to ensure high quality of delivered healthcare. Information and communication technology (ICT) may be a valuable tool for handling these challenges. One way of enhancing the exchange of information could be to establish a link between patient-specific and general information sent to the general practitioner (GP). The aim of the present paper is to study GPs' use of a hyperlink inserted into electronic test result communication. Methods We inserted a hyperlink into the electronic test result communication sent to the patients’ GPs who participated in a regional, systematic breast cancer screening program. The hyperlink target was a web-site with information on the breast cancer screening program and breast cancer in general. Different strategies were used to increase the GPs’ use of this hyperlink. The outcome measure was the GPs’ self-reported use of the link. Data were collected by means of a one-page paper-based questionnaire. Results The response rate was 73% (n=242). In total, 108 (45%) of the GPs reported to have used the link. In all, 22% (n=53) of the GPs used the web-address from a paper letter and 37% (n=89) used the hyperlink in the electronic test result communication (Δ = 15%[95%confidence int erval(CI) = 8 − 22%P Conclusions The results suggest that hyperlinks in electronic test result communication could be a feasible strategy for combining and sharing different types of healthcare information.

Abstract Background Delay in diagnosis of cancer may worsen prognosis. The aim of this study is to explore patient-, general practitioner (GP)- and system-related delay in the interval from first cancer symptom to diagnosis and treatment, and to analyse the extent to which delays differ by cancer type. Methods Population-based cohort study conducted in 2004-05 in the County of Aarhus, Denmark (640,000 inhabitants). Data were collected from administrative registries and questionnaires completed by GPs on 2,212 cancer patients newly diagnosed during a 1-year period. Median delay (in days) with interquartile interval (IQI) was the main outcome measure. Results Median total delay was 98 days (IQI 57-168). Most of the total delay stemmed from patient (median 21 days (7-56)) and system delay (median 55 days (32-93)). Median GP delay was 0 (0-2) days. Total delay was shortest among patients with ovarian (median 60 days (45-112)) and breast cancer (median 65 days (39-106)) and longest among patients with prostate (median 130 days (89-254)) and bladder cancer (median 134 days (93-181)). Conclusion System delay accounted for a substantial part of the total delay experienced by cancer patients. This points to a need for shortening clinical pathways if possible. A long patient delay calls for research into patient awareness of cancer. For all delay components, special focus should be given to the 4th quartile of patients with the longest time intervals and we need research into the quality of the diagnostic work-up process. We found large variations in delay for different types of cancer. Improvements should therefore target both the population at large and the specific needs associated with individual cancer types and their symptoms.

Abstract Background It has now for many years been recognised that patient evaluations should be undertaken as an integral part of the complex task of improving the quality of general practice care. Yet little is known about the general practitioners' (GPs') benefit from patient evaluations. Aim 1 was to study the impact on the GPs of a patient evaluation and subsequent feedback of results presented at a plenary session comprising a study guide for the results and group discussions. Aim 2 was to study possible facilitators and barriers to the implementations of the results raised by the patient evaluation process. Methods A patient evaluation survey of 597 voluntarily participating GPs was performed by means of the EUROPEP questionnaire. Evaluation results were fed back to the GPs as written reports at a single feedback meeting with group discussions of the results. Between 3 and 17 months after the feedback, the 597 GPs received a questionnaire with items addressing their experience with and perceived benefit from the evaluations. Results 79.4% of the GPs responded. 33% of the responding GPs reported that the patient evaluation had raised their attention to the patient perspective on the quality of general practice care. Job satisfaction had improved among 26%, and 21% had developed a more positive attitude to patient evaluations. 77% of the GPs reported having learnt from the evaluation. 54% had made changes to improve practice, 82% would recommend a patient evaluation to a colleague and 75% would do another patient evaluation if invited. 14% of the GPs had become less positive towards patient evaluations, and job satisfaction had decreased among 3%. Conclusions We found a significant impact on the GPs regarding satisfaction with the process and attitude towards patient evaluations, GPs' attention to the patients' perspective on care quality and their job satisfaction. Being benchmarked against the average seemed to raise barriers to the concept of patient evaluations and difficulties interpreting the results may have formed a barrier to their implementation which was partly overcome by adding qualitative data to the quantitative results. The GPs' significant willingness to share and discuss the results with others may have served as a facilitator.

Abstract Background Delay in cancer diagnosis may have serious prognostic consequences, and some patients experience delays lasting several months. However, we have no knowledge whether such delays are associated with general practitioner (GP) characteristics. The aim of the present study was to analyse whether GP and practice characteristics are associated with the length of delay in cancer diagnosis. Methods The study was designed as a population-based cohort study. The setting was the County of Aarhus, Denmark (640,000 inhabitants). Participants include 334 GPs and their 1,525 consecutive, newly diagnosed cancer patients. During one year (September 2004 to August 2005), patients with incident cancer were enrolled from administrative registries. GPs completed questionnaires on the patients' diagnostic pathways and on GP and practice characteristics. Delay was categorised as patient-related (more than 60 days), doctor-related (more than 30 days) and system-related (more than 90 days). The associations between delay and characteristics were assessed in a logistic regression model using odds ratios (ORs). Results No GP characteristics (seniority, practice organization, list size, participation in continuing medical education, job satisfaction and level of burnout) were associated with doctor delay. Patients of female GPs more often had a short patient delay than patients of male GPs (OR 0.44, 95% confidence interval (95%CI) 0.28 to 0.71). Patients whose GPs provided many services (OR 0.66, 95%CI 0.44 to 0.95) and patients attending GPs with little former knowledge of their patients (OR 0.68, 95%CI 0.47 to 0.99) more often experienced a short system delay than patients attending GPs with less activity and more knowledge of their patients. Patients listed with a female GP more often experienced a long system delay than patients of male GPs (OR 1.50, 95%CI 1.02 to 2.21). Finally, patients with low GP-reported compliance more often experienced a long system delay (OR 1.73, 95%CI 1.07 to 2.80) than patients with higher compliance. Conclusions GP characteristics were not statistically significantly associated with doctor delay. However, some GP characteristics were associated with patient and system delay, which indicates that these factors may be important for understanding patient delay (e.g. perceived GP accessibility and the GP-patient relationship) and system delay (e.g. the GP's experience and opportunities for referring and coordinating diagnostic work-up).

Abstract Background Most terminally ill cancer patients and their relatives wish that the patient dies at home. Community nurses (CNs) are often frontline workers in the patients' homes and CN involvement may be important in attaining successful palliative pathways at home. The aim of the present study was to examine associations between bereaved relatives' evaluation of palliative treatment at home and 1) place of death and 2) CN involvement. Methods The study is a population-based, cross-sectional combined register and questionnaire study performed in Aarhus County, Denmark. CN questionnaires were used to obtain data on CNs' efforts, GP-questionnaires were used to obtain data on pathway characteristics and relatives answered questionnaires to evaluate the palliative pathway at home. Questionnaires addressed the palliative pathway of a total of 599 deceased cancer patients. Associations between bereaved relatives' evaluation of palliative pathways at home and place of death and CN involvement were analysed. Results 'A successful palliative pathway at home' was positively associated with home-death and death at a nursing home compared with death at an institution. No significant associations were identified between the evaluations of the palliative pathway at home and the involvement of CNs. Conclusions Our study indicates that dying at home is positively associated with a higher likelihood that the bereaved relative will evaluate the palliative pathway at home as successful. The absence of any significance of involvement of CNs may be ascribed to the variables for involvement chosen in the study. More research is needed on CNs' impact on palliative pathways.

Abstract Background There is no validated way of measuring the prevalence and duration of patient delay, and we do not know how people perceive and define the time intervals they are asked to report in patient delay studies. This lack of a validated measure hampers research in patient delay and is counterproductive to efforts directed at securing early diagnosis of cancer. Discussion The main argument of the present paper is that current studies on patient delay do not sufficiently consider existing theories on symptom interpretation. It is illustrated that the interpretation of bodily sensations as symptoms related to a specific cancer diagnosis is embedded within a social and cultural context. We therefore cannot assume that respondents define delay periods in identical ways. Summary In order to improve the validity of patient delay studies, it is suggested that research be strengthened on three counts: More research should be devoted to symptom interpretation processes, more research should seek to operationalise patient delay, and, importantly, more research is needed to develop valid instruments for measuring patient delay.

Abstract Background The knowledge and use of qualitative description as a qualitative research approach in health services research is limited. The aim of this article is to discuss the potential benefits of a qualitative descriptive approach, to identify its strengths and weaknesses and to provide examples of use. Discussion Qualitative description is a useful qualitative method in much medical research if you keep the limitations of the approach in mind. It is especially relevant in mixed method research, in questionnaire development and in research projects aiming to gain firsthand knowledge of patients', relatives' or professionals' experiences with a particular topic. Another great advantage of the method is that it is suitable if time or resources are limited. Summary As a consequence of the growth in qualitative research in the health sciences, researchers sometimes feel obliged to designate their work as phenomenology, grounded theory, ethnography or a narrative study when in fact it is not. Qualitative description might be a useful alternative approach to consider.

Abstract Background Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease. Methods The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses. Results Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked). Conclusion The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.

Abstract Background Knowledge of the extent to which patient characteristics are systematically associated with variation in patient evaluations will enable us to adjust for differences between practice populations and thereby compare GPs. Whether this is appropriate depends on the purpose for which the patient evaluation was conducted. Associations between evaluations and patient characteristics may reflect gaps in the quality of care or may be due to inherent characteristics of the patients. This study aimed to determine such associations in a setting with a comprehensive list system and gate-keeping. Methods A nationwide Danish patient evaluation survey among voluntarily participating GPs using the EUROPEP questionnaire, which produced 28,260 patient evaluations (response rate 77.3%) of 365 GPs. In our analyses we compared the prevalence of positive evaluations in groups of patients. Results We found a positive GP assessment to be strongly associated with increasing patient age and increasing frequency of attendance. Patients reporting a chronic condition were more positive, whereas a low self-rated health was strongly associated with less positive scores also after adjustment. The association between patient gender and assessment was weak and inconsistent and depended on the focus. We found no association either with the patients' educational level or with the duration of listing with the GP even after adjusting for patient characteristics. Conclusion Adjustment for patient differences may produce a more fair comparison between GPs, but may also blur the assessment of GPs' ability to meet the needs of the populations actually served. On the other hand, adjusted results will enable us to describe the significance of specific patient characteristics to patients' experience of care.

Abstract This study aims to analyze whether the rehabilitation of cancer surviving patients (CSPs) can be better organized. The data for this paper consists of focus group interviews (FGIs) with CSPs, general practitioners (GPs) and hospital physicians. The analysis draws on the theoretical framework of Jürgen Habermas, utilizing his notions of 'the system and the life world' and 'communicative and strategic action'. In Habermas' terminology, the social security system and the healthcare system are subsystems that belong to what he calls the 'system', where actions are based on strategic actions activated by the means of media such as money and power which provide the basis for other actors' actions. The social life, on the other hand, in Habermas' terminology, belongs to what he calls the 'life world', where communicative action is based on consensual coordination among individuals. Our material suggests that, within the hospital world, the strategic actions related to diagnosis, treatment and cure in the biomedical discourse dominate. They function as inclusion/exclusion criteria for further treatment. However, the GPs appear to accept the CSPs' previous cancer diagnosis as a precondition sufficient for providing assistance. Although the GPs use the biomedical discourse and often give biomedical examples to exemplify rehabilitation needs, they find psychosocial aspects, so-called lifeworld aspects, to be an important component of their job when helping CSPs. In this way, they appear more open to communicative action in relation to the CSPs' lifeworld than do the hospital physicians. Our data also suggests that the CSPs' lifeworld can be partly colonized by the system during hospitalization, making it difficult for CSPs when they are discharged at the end of treatment. This situation seems to be crucial to our understanding of why CSPs often feel left in limbo after discharge. We conclude that the distinction between the system and the lifeworld and the implications of a possible colonization during hospitalization offers an important theoretical framework for determining and addressing different types of rehabilitation needs.

Abstract Background Delay in cancer diagnosis may be important for cancer prognosis. Large individual variations in the duration of delay have been observed. This study examines whether patients' socioeconomic characteristics are predictors of long patient-, doctor- and system-related delay in cancer diagnosis. Methods Danish population-based cohort study. From September 2004 to September 2005, newly diagnosed cancer patients were enrolled from administrative registries. A total of 467 general practitioners in the County of Aarhus, Denmark, completed questionnaires on 2,212 cancer patients' diagnostic pathways. A total of 1,252 cancer patients filled in questionnaires on their socioeconomic characteristics (e.g. marital status, education, occupation, household income and fortune). Delay was categorised as short or long based on quartiles. Predictors of long delay were assessed in a logistic regression model using odds ratios (ORs) as a proxy of relative risks. Results In regard to patient delay, retired female patients experienced shorter delays (OR 0.35, 95% confidence interval (95%CI) 0.13 to 0.98) than employed female patients, while female smokers experienced longer delays (OR 2.42, 95%CI 1.21 to 4.85) than female non-smokers. In regard to doctor delay, female patients with a large household fortune experienced shorter delays (OR 0.07, 95%CI 0.01 to 0.45) than economically less privileged female patients. Well-educated men experienced shorter delays (OR 0.40, 95%CI 0.16 to 1.00) than men with short education. Male patients experienced longer doctor delays (OR 2.11, 95%CI 1.11 to 4.02) than women when gender-specific cancers were excluded. In regard to system delay, female patients with a large household fortune experienced shorter delays (OR 0.46, 95%CI 0.21 to 0.99) than economically less privileged women, while female patients with a high alcohol intake experienced longer delays (OR 2.82, 95%CI 1.18 to 6.72) than women with an average intake. Conclusion We found socioeconomic predictors of delay that allow us to hypothesize social inequalities in the distribution of delay, but, in general, only a few socioeconomic variables predicted delay in cancer diagnosis. Future research should examine a broader array of patients' personal characteristics.

Abstract Background Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited. The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary care setting to explore barriers and facilitators for delivery of good palliative home care. Methods Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results Three main categories of experience were identified: 1) The health professionals' management, where a need to optimize was found. 2) Shared care, which was lacking. 3) The relatives' role, which needs an extra focus. Conclusion Relatives experience insufficient palliative care mainly due to organizational and cultural problems among professionals. Palliative care in primary care in general needs improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement.