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Background: General practice recognizes the existential dimension as an integral part of multidimensional patient care alongside the physical, psychological and social dimensions. However, general practitioners (GPs) report substantial barriers related to communication with patients about existential concerns., Objectives: To describe the development of the EMAP tool facilitating communication about existential problems and resources between GPs and patients with cancer., Methods: A mixed-methods design was chosen comprising a literature search, focus group interviews with GPs and patients (n = 55) and a two-round Delphi procedure initiated by an expert meeting with 14 experts from Denmark and Norway., Results: The development procedure resulted in a semi-structured tool containing suggestions for 10 main questions and 13 sub-questions grouped into four themes covering the existential dimension. The tool utilized the acronym and mnemonic EMAP (existential communication in general practice) indicating the intention of the tool: to provide a map of possible existential problems and resources that the GP and the patient can discuss to find points of reorientation in the patient's situation., Conclusion: This study resulted in a question tool that can serve as inspiration and help GPs when communicating with cancer patients about existential problems and resources. This tool may qualify GPs' assessment of existential distress, increase the patient's existential well-being and help deepen the GP-patient relationship.

Background: Some European countries have introduced standardised cancer patient pathways (CPPs), including urgent referrals, with the aim of diagnosing cancer at an earlier stage. This is despite a lack of evidence, particularly in patients with symptomatic cancer diagnosed via general practice., Aim: To compare tumour stages in patients with incident cancer diagnosed via general practice before, during, and after CPP implementation in Denmark in 2008-2009., Design and Setting: A comparative cohort study of data from GPs and registries on patients with incident cancer listed with a GP before (n = 1420), during (n = 5272), and after (n = 2988) CPP implementation., Method: χ(2) test was used to compare stage distributions and logistic regression to estimate odds ratios (OR) of having local cancer after versus before CPP implementation., Results: Distribution of tumour stages did not differ statistically significantly across time (P = 0.494) or between CPP use (P = 0.202). For all cancers combined, the OR of having local cancer after CPP implementation was 0.88 (95% confidence interval [CI] = 0.73 to 1.06) compared with before. For CPP-referred patients, the OR of having local cancer was 0.77 (95% CI = 0.62 to 0.94) compared with all patients before CPP implementation; the corresponding OR for non-CPP-referred patients was 0.96 (95% CI = 0.80 to 1.14)., Conclusion: No clear tendencies were observed confirming earlier detection of cancer after rather than before CPP implementation. CPP-referred patients had lower odds of having local cancer after CPP implementation than all patients before CPP implementation; this could be because the GPs refer patients who are 'more ill' as urgent referrals., (© British Journal of General Practice 2016.)

Background: From 2008, Danish general practitioners could refer patients suspected of having cancer to standardised cancer patient pathways (CPPs). We aimed to compare the length of the diagnostic interval in 2010 with the length of the diagnostic interval before (2004/05) and during (2007/08) the implementation of CPPs in Denmark for all incident cancer patients who attended general practice prior to the cancer diagnosis., Methods: General practitioner questionnaires and register data on 12,558 patients were used to compare adjusted diagnostic interval across time by quantile regression., Results: The median diagnostic interval was 14 (95% CI: 11;16) days shorter during and 17 (95% CI: 15;19) days shorter after the implementation of CPPs than before. The diagnostic interval was 15 (95% CI: 12;17) days shorter for patients referred to a CPP in 2010 than during the implementation, whereas patients not referred to a CPP in 2010 had a 4 (95% CI: 1;7) days longer median diagnostic interval; the pattern was similar, but larger at the 75(th) and 90(th) percentiles., Conclusion: The diagnostic interval was significantly lower after CPP implementation. Yet, patients not referred to a CPP in 2010 tended to have a longer diagnostic interval compared to during the implementation. CPPs may thus only seem to expedite the diagnostic process for some cancer patients.

Background: Many countries have implemented standardised cancer patient pathways (CPPs) to ensure fast diagnosis of patients suspected of having cancer. Yet, studies are sparse on the impact of such CPPs, and few have distinguished between referral routes. For incident cancer patients, we aimed to determine how often GPs suspected cancer at the time of first presentation of symptoms in general practice and to describe the routes of referral for further investigation. In addition, we aimed to analyse if the GP's suspicion of cancer could predict the choice of referral to a CPP. Finally, we aimed to analyse associations between not only cancer suspicion and time to cancer diagnosis, but also between choice of referral route and time to cancer diagnosis., Methods: We conducted a population-based, cross-sectional study of incident cancer patients in Denmark who had attended general practice prior to their diagnosis of cancer. Data were collected from GP questionnaires and national registers. We estimated the patients' chance of being referred to a CPP (prevalence ratio (PR)) using Poisson regression. Associations between the GP's symptom interpretation, use of CPP and time to diagnosis were estimated using quantile regression., Results: 5,581 questionnaires were returned (response rate: 73.8%). A GP was involved in diagnosing the cancer in 4,101 (73.5%) cases (3,823 cases analysed). In 48.2% of these cases, the GP interpreted the patient's symptoms as 'alarm' symptoms suggestive of cancer. The GP used CPPs in 1,426 (37.3%) cases. Patients, who had symptoms interpreted as 'vague' had a lower chance of being referred to a CPP than when interpreted as 'alarm' symptoms (PR = 0.53 (95%CI: 0.48;0.60)). Patients with 'vague' symptoms had a 34 (95% CI: 28;41) days longer median time to diagnosis than patients with 'alarm' symptoms., Conclusions: GPs suspect cancer more often than they initiate a CPP, and patients were less likely to be referred to a CPP when their symptoms were not interpreted as alarm symptoms of cancer. The GP's choice of referral route was a strong predictor of the duration of the diagnostic interval, but the GP's symptom interpretation was approximately twice as strong an indicator of a longer diagnostic interval.

Introduction: On-time identification of incident cancer patients is important in cancer research to ensure quality in cancer treatment and care. Nevertheless, the Danish Cancer Registry (DCR) is updated on an annual basis rather than continuously, and no standardised algorithm exists to enable sampling from administrative data which are updated on a monthly basis. The aim of this study was to develop and validate an algorithm for on-time sampling of incident cancer patients based on administrative data., Material and Methods: The study was based on registry and questionnaire data from incident cancer patients' general practitioners (GPs). An algorithm for on-time sampling of incident cancer patients was developed and validated in 2008 (12,747 patients) and further developed and validated in 2010 (7,996 patients). Questionnaire data from the GPs and data from the DCR were used as gold standards. The completeness over time of the 2010 cohort was evaluated., Results: Further development of the 2008 algorithm into the 2010 algorithm increased its positive predictive value (PPV) to 95.0%. The PPV of a patient from the 2010 cohort being registered in the DCR was 97.4%. The 2010 algorithm displayed a completeness of 60% in the first month and 95% after four months., Conclusion: A valid and cost-saving algorithm for on-time sampling of incident cancer patients has been developed with great potential for research and quality assurance., Funding: This work was funded by the Danish Cancer Society and the Novo Nordisk Foundation., Trial Registration: not relevant.

Background: Urgent referral for suspected cancer was implemented in Denmark on 1 April 2008 to reduce the secondary care interval (i.e. the time interval from the general practitioner's first referral of a patient to secondary health care until treatment is initiated). However, knowledge about the association between the secondary care interval and urgent referral remains scarce. The aim of this study was to analyse how the secondary care interval changed after the introduction of urgent referral., Methods: This was a retrospective population-based study of 6,518 incident cancer patients based on questionnaire data from the patients' GPs. Analyses were stratified with patients discharged from Vejle Hospital in one stratum and patients from other hospitals in another because Vejle Hospital initiated urgent referrals several years prior to the national implementation. Further, analyses were stratified according to symptom presentation and whether or not the GP referred the patient on suspicion of cancer. Symptom presentation was defined as with or without alarm symptoms based on GP interpretation of early symptoms., Results: The median secondary care interval decreased after the introduction of urgent referral. Patients discharged from Vejle Hospital tended to have shorter secondary care intervals than patients discharged from other hospitals. The strongest effect was seen in patients with alarm symptoms and those who were referred by their GP on suspicion of cancer. Breast cancer patients from Vejle Hospital experienced an even shorter secondary care interval after the national introduction of urgent referrals., Conclusion: Urgent referral had a positive effect on the secondary care interval, and Vejle Hospital remarkably managed to shorten the intervals even further. This finding indicates that the shorter secondary care intervals not only result from the urgent referral guidelines, but also involve other factors.

Background: Equal access to end-of-life care is important. However, social inequality has been found in relation to place-of-death. The question is whether social and economic factors play a role in access to specialist palliative care services., Objective: The study analyzed the association between access to outreach specialist palliative care teams (SPCTs) and socioeconomic characteristics of Danish cancer patients who died of their cancer., Methods: The study was a population-based, cross-sectional register study. We identified 599 adults who had died of cancer from March 1 to November 30, 2006, in Aarhus County, Denmark. Data from health registers were retrieved and linked based on the unique personal identifier number., Results: Multivariate analysis with adjustment for age, gender, and general practitioner (GP) involvement showed a higher probability of contact with an SPCT among immigrants and descendants of immigrants than among people of Danish origin (prevalence ratio [PR]: 1.55; 95% confidence interval (CI): 1.04;2.31) and among married compared to unmarried patients (PR: 1.25; 95% CI: 1.01;1.54). The trends were most marked among women., Conclusion: We found an association between females, married patients, and female immigrants and their descendants and access to an SPCT in Denmark. However, no association with the examined economic factor was found. Need for specialized health care, which is supposed to be the main reason for access to an SPCT, may be related to economic imbalance; and despite the relative equality found, SPCT access may not be equal for all Danish residents. Further research into social and economic consequences in palliative care services is warranted.

Background: Meeting patient's preferences is an important outcome in palliative care. No Scandinavian study has reported systematically collected preferences from patients regarding place of care (POC) and place of death (POD). The extent of possible incongruence between patients' preferences and reality remains unknown., Aim: The aim of this study was to describe patients' preferred POC and POD and changes in preferences over time and to evaluate congruence between preferences and reality. Furthermore, the aim was to search for predictive factors regarding patients' wishes and fulfilment of these., Method: This is a prospective interview and questionnaire study., Setting/participants: The study was conducted in the former Aarhus County, Denmark and 96 end-stage cancer patients participated., Results: Of the patients, who stated a preference, 84% preferred home care and 71% preferred home death. A positive association between living with a partner and both wishing for home care and home death was observed (prevalence ratio (PR): 1.66 (95% confidence intervals (CI): 1.07, 2.58), p = 0.02 and PR: 2.33 (95% CI: 1.14, 4.77), p = 0.02, respectively). Marked changes in preferences were observed. Overall, preferences were met for approximately half of the patients, although kappa values were low (κ=0.132 for POC and κ=0.034 for POD).We found a significant association between being cared for in the preferred place and having contact with a palliative care team (PR: 2.01 (95% CI: 1.02, 3.98), p = 0.045)., Conclusion: Regular discussions with patients on this subject are needed. Social and professional support is of importance in meeting patients' preferences. Larger scaled studies and research focusing on meeting patients' preferences are needed.

This study examined associations between avoidance and approach coping and patient delay in cancer patients (N = 1024). Approach coping was associated with short appraisal intervals (time from symptom discovery to recognition of symptom seriousness). Avoidance coping was associated with long appraisal intervals when adjusting for covariates. Help-seeking intervals (time from recognition of symptom seriousness to contact to general practitioner) were only associated with approach coping and only when adjusting for the influence of covariates. The results revealed a complex relationship between coping and patient delay and supported that normal processing of health threats implies avoidance and approach coping strategies.

Objectives: There is little research on complicated grief (CG) in family caregivers in palliative care. The aim of the study was to assess the levels of complicated grief and depression in family caregivers after the death of a relative with cancer, to identify their need for support, to compare the palliative team staff's risk assessment of the relatives' grief reaction with measured levels of CG and depression, and to assess the use of bereavement support., Methods: All 114 eligible family caregivers to deceased patients treated in a palliative care unit in the year 2006 were asked to participate in the study, and 87 (77%) accepted. The participants completed a postal questionnaire 2, 6, 13, and 18 months after the loss measuring complicated grief (Inventory of Complicated Grief, Revised), depression (Beck's Depression Inventory II), and their use of bereavement services. The palliative team staff completed a form 1 month post-loss with their clinical risk assessment of the family caregivers' levels of complicated grief and need for support., Results: The prevalence of moderate to severe depression and CG was 15% and 40%, respectively, at 6 months post-loss. Professional risk assessment showed a sensitivity of 55% for CG and of 27% for depression and a specificity of 86% for depression and 63% for CG. The positive predictive value was 27% for depression and 21% for CG. Use of bereavement services was observed in 36% of the cases at 6 months after the loss. The proportion of bereaved with CG or depression at 6 months who had received bereavement services was 47% and 64%, respectively., Conclusions: The results suggest that a substantial number of family caregivers of diseased palliative care patients are at risk of developing CG and depression following their loss. While early identification of those at risk of developing CG could be helpful, the risk assessment of professionals may lack in precision. The results indicate that bereavement services could be utilized in a more targeted and perhaps more efficient manner. Guidelines for bereavement planning in palliative care are indicated.

Background: Knowledge of how children with cancer present in general practice is sparse. Timely referral from general practice is important to ensure early diagnosis., Aim: To investigate the presenting symptoms and GPs' interpretations of symptoms of children with cancer., Design and Setting: A Danish nationwide population-based study including children (<15 years) with an incident cancer diagnosis (January 2007 to December 2010)., Method: A questionnaire on symptoms and their interpretation was mailed to GPs (n=363). Symptoms were classified according to the International Classification of Primary Care (ICPC)-2 classification., Results: GPs' response rate was 87% (315/363) and GPs were involved in the diagnostic process of 253 (80.3%) children. Symptoms were few (2.4 per child) and most fell into the category 'general and unspecified' (71.9%), apart from patients with tumours of the central nervous system (CNS), whose symptoms fell mostly in the category 'neurological' (for example, headache). Symptoms like pain, swelling/lump, or fatigue were reported in 25% of the patients and they were the most commonly reported symptoms. GPs interpreted children's symptoms as alarm symptoms in 20.2%, as serious (that is, not alarm) symptoms in 52.9%, and as vague symptoms in 26.9%. GPs' interpretation varied significantly by diagnosis (P<0.001)., Conclusion: Children with cancer presented with few symptoms in general practice, of which most were 'general and unspecified' symptoms. Only 20% presented alarm symptoms, while 27% presented vague and non-specific symptoms. This low level of alarm symptoms may influence the time from symptom presentation in general practice to final diagnosis.

Objective: Most terminally ill patients and relatives prefer care and death to occur at home. However, in many cases patients die in hospital and the question arises whether social inequity in palliative care exists. The aim of this study was to analyse associations between dying at home and demographic and socioeconomic characteristics adjusted for healthcare utilisation among Danish cancer patients., Method: Population-based, cross-sectional register study in Aarhus County, Denmark. 599 deceased adults who died from cancer from 1 March to 30 November 2006 in a well-defined geographical area were identified. Based on unique personal identifier numbers, socioeconomic data and healthcare utilisation from different registers were retrieved and analysed., Results: Multivariate analysis showed that dying at home was negatively associated with, first, being either 50-59 (prevalence ratio (PR): 0.67 (95% CI 0.45 to 0.99)) or 70-79 years of age (PR: 0.83 (95% CI 0.70 to 0.99)) compared with being 80 years or above; second, a middle personal income compared with a high income (PR: 0.86 (95% CI 0.75 to 1.00)); and, third, being employed or having a leadership position compared with being unemployed/student/receiving social security (PR: 0.72 (95% CI 0.53 to 0.98))., Conclusion: The found socioeconomic differences in whether death occurred at home or at institutions indicate that age, income and social class must be taken into account when palliative care services engage in fulfilling preferences of dying at home. This may lead to more equality in the possibility of dying at home, despite differences in socioeconomic level.

Aim: To determine the time intervals from symptom to treatment for childhood cancer patients., Methods: Danish national population-based study. Children (<15 years) with an incident cancer diagnosed from January 2007 to December 2010 were sampled. A total of 376 (68%) parents and 315 (87%) general practitioners (GPs) completed questionnaires on the diagnostic pathway. The time interval was categorized into, patient-, GP-, system-, diagnostic- and total intervals, and as short or long intervals. Factors associated with long time intervals were assessed in a logistic regression model using prevalence ratios (PRs)., Results: Girls were almost twice as likely as boys to experience long patient intervals (adjusted PR: 1.8, 95% confidence interval (CI): 1.1-2.8). The oldest children were more likely than the youngest to experience long total intervals (adjusted PR: 1.9, 95% CI: 1.1-3.3). Cancer type was associated with all time intervals, except GP intervals. Children with bone- and CNS tumours had the longest total intervals (median: 88 days, interquartile interval (IQI): 57-132) vs. (median: 76, IQI: 28-191). Parental education showed a possible association with patient- and GP intervals., Conclusion: Time intervals varied by gender, age and cancer type. Parental education may possibly affect the patient- and GP intervals., (Published 2012. This article is a U.S. Government work and is in the public domain in the USA.)

Achieving home death is often seen as an important endpoint in palliative care, but no studies of the preferred place-of-death have yet been conducted in Scandinavia. Furthermore, we do not know if professionals' report on deceased patients' preference of place-of-death is a valid information. The aim of this study was to describe where terminally ill Danish cancer patients prefer to die and to determine if their preference changed during the palliative period, as reported retrospectively by bereaved relatives, general practitioners (GPs) and community nurses (CNs) and to assess the agreement of their accounts. The study was a population-based, cross-sectional combined register and questionnaire study in Aarhus County, Denmark. The population comprised 599 deceased adult cancer patients who had died from 1 March to 30 November 2006 and were identified through merging of health registers. Relatives returned 198 questionnaires about patients' preferred place-of-death, GPs 333 and CNs 201. The study showed that most terminally ill cancer patients preferred home death (up to 80.7%). The reported preference for home death weakened as death approached (down to 64.4%). A better congruence was seen between relatives' and GPs' accounts of preference for place of death at the end of the palliative period (κ 0.71) than between relatives' and CNs' accounts (κ 0.37). In conclusion, bereaved relatives (and GPs and CNs) report retrospectively that most terminally ill cancer patients wish to die at home. The preference weakened significantly as death approached. The agreement between relatives' and GPs' accounts on patients' preferences at the end of the palliative period was 'substantial', whereas the agreement between relatives' and CNs' accounts at the same time was significantly less outspoken. This indicates that CNs may be facing a problem in assessing their patients' wishes retrospectively., (© 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.)

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., (© 2011 Hansen et al; licensee BioMed Central Ltd.)

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).

Objective: Palliative home care involves coordination of care between the professionals involved. The NICE guideline on supportive and palliative care (UK) recommends that teams, regardless of their base, should promote continuity for patients. This may involve nomination of a coordinating "key worker". This study aimed to explore who acts as key worker and who ought to take on this role in the views of patients, relatives, and primary care professionals. Furthermore, it aimed to explore the level of agreement on this issue between study participants., Design: Interview and questionnaire study., Setting: Former County of Aarhus, Denmark (2008-2009)., Subjects: Ninety-six terminally ill cancer patients, their relatives, general practitioners (GPs), and community nurses (CNs)., Main Outcome Measures: Actual key worker as valued by patients, relatives, and primary care professionals; ideal key worker as valued by patients and relatives. RESULTS. Patients, relatives, GPs, and CNs most often saw themselves as having been the key worker. When asked about the ideal key worker, most patients (29%; 95%CI: 18;42) and relatives (32%; 95%CI: 22;45) pointed to the GP. Using patients' views as reference, we found very limited agreement with relatives (47.7%; k = 0.05), with GPs (30.4%; k = 0.01) and with CNs (25.0%; k = 0.04). Agreement between patients and relatives on the identity of the ideal key worker was of a similar dimension (29.6%; k = 0.11)., Conclusion: Poor agreement between patients, relatives, and professionals on actual and ideal key worker emphasizes the need for matching expectations and clear communication about task distribution in palliative home care.

Objective: The absence of a more significant improvement in cancer survival in countries such as the UK and Denmark may be partly rooted in delayed care-seeking among cancer patients. Past research on patient delay has mainly focused on patient characteristics (e.g. sociodemographic and psychological factors and symptom recognition) as causes of delayed care-seeking, while few studies have examined how the organizational structure of health care systems may influence patients' reflections on seeking care. The aim of this study was to explore this relationship., Design: The analysis presented is based on semi-structured interviews with 30 cancer patients and their families., Results: The article raises two hypotheses on the relationship between structural elements of a health care system and people's reflections on seeking health care: (1) Gatekeeping introduces an asymmetrical relationship between the patient and the GP which potentially results in self-restricting care-seeking, (2) Continuity in the doctor-patient relationship may negatively influence patient reflections on access to health care, as the focus shifts from the medical issues of the consultation to reflections on how to properly interact with the GP and the system in which she/he is situated., Conclusion: It is concluded that these hypotheses form a sound basis for further primary care research on how the organizational structure of health care systems influences patient reflections on access to medical care.

Background: It is puzzling to note that British and Danish citizens have a poorer cancer prognosis than citizens from other countries, and this study hypothesises that their low cancer survival could be partly rooted in the gatekeeper function undertaken by general practice in these two countries., Aim: To test the association between principles of gatekeeper systems and cancer survival., Design and Setting: An ecologic study with data from EUROCARE-4 and primary care structure., Method: This hypothesis was tested in an ecologic study on the association between three principles of gatekeeper systems and cancer survival in 19 European countries for which valid and full data were available., Results: It was found that healthcare systems with a gatekeeper system do have a significantly lower 1-year relative cancer survival than systems without such gatekeeper functions., Conclusion: The possible mechanisms behind this finding are discussed, and while all the positive aspects of gatekeeping are recognised, it is strongly recommended that further research be conducted to confirm or reject the study hypothesis on this possible serious adverse effect of gatekeeping.

Background: General practice plays an important role in the cancer care pathway. The initial diagnostic phase may be crucial for the relationship between the patient and the GP., Aim: The aim was to describe whether patients' confidence in their GP changed after a cancer diagnosis, and analyse whether the change in confidence was associated with doctor delay., Design and Setting: Population-based cohort study with 1892 questionnaires sent to patients and their GPs in general practices in the former Aarhus County, Denmark., Method: Information on patients' confidence in their GP was obtained from the patient questionnaire. Information on doctor delay was obtained from the GPs and defined as a period of 14 days or more from the date of first symptom presentation to the GP until cancer-specific investigation was initiated., Results: Before the cancer diagnosis, 88.4% of the patients had confidence in their GP, which decreased to 80.0% after the diagnosis (P<0.001); 15.8% of the patients who experienced no doctor delay reported a decrease in confidence after the cancer diagnosis, compared with 29.1% of the patients with a doctor delay (P<0.001). Patients presenting with alarm symptoms and experiencing doctor delay were 3.8 times more likely to lose confidence compared with those presenting with alarm symptoms who experienced no doctor delay (P = 0.048)., Conclusion: The majority of the patients had high levels of confidence in their GP before, as well as after, the cancer diagnosis. Nevertheless, a substantial amount had low confidence in the GP, especially when experiencing doctor delay in the initial phase of the pathway.

Objective: General practitioner (GP) involvement may be instrumental in obtaining successful palliative cancer trajectories. The aim of the study was to examine associations between bereaved relatives' evaluation of palliative cancer trajectories, place of death, and GP involvement., Design: Population-based, cross-sectional combined register and questionnaire study., Setting: The former Aarhus County, Denmark., Subjects: Questionnaire data on GPs' palliative efforts and relatives' evaluations of the palliative trajectories were obtained for 153 cases of deceased cancer patients., Main Outcome Measures: A successful palliative trajectory as evaluated retrospectively by the relatives., Results: Successful palliative trajectories were statistically significantly associated with home death (PR 1.48 (95% CI 1.04; 2.12)). No significant associations were identified between the evaluations of the palliative trajectory at home and GP involvement. "Relative living with patient" (PR 1.75 (95% CI: 0.87; 3.53)) and "GP having contact with relatives" (PR 1.69 (95% CI 0.55; 5.19)) were not significantly associated, but this may be due to the poor number of cases included in the final analysis., Conclusion: This study indicates that home death is positively associated with a higher likelihood that bereaved relatives will evaluate the palliative trajectory at home as successful. No specific GP services that were statistically significantly associated with higher satisfaction among relatives could be identified, but contact between GPs and relatives seems important and the impact needs further investigation.

Background: Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care., Objective: The aim of this study was to analyze health professionals' views on interprofessional cooperation in basic level palliative home care for terminally ill cancer patients., Method: This study was a qualitative, descriptive study based on 7 semistructured group interviews conducted in the former Aarhus County, Denmark. Forty-three health professionals (23 family physicians, 5 chief physicians, and 15 home care nurses) were interviewed., Results: Two main categories of problems were identified: (1) the organization of palliative home care (need for proactive planning from the start of the palliative trajectory, clear distribution of tasks, advancement of more efficient communication pathways, and improved accessibility to all health professionals) and (2) interaction between health professionals (increased knowledge of and respect for the competencies of other health occupations and individuals)., Conclusion: The study indicates problems with respect to both the organization of the basic level palliative home care and the working culture among health professionals. The main issues: distribution of tasks, information exchange, availability, respect, and personal acquaintance are pivotal to improve the delivery of palliative home care, to training in palliative care and warrant future research.

Care coordination is a superordinate term for terms related to the optimization of care for people suffering from chronic diseases and cancer. In this article, we present Danish terms for "disease management programme" and "case management" among others, and effects are summarized. The central Danish terms explored are "forløbskoordinering", "forløbsprogram", "forløbskoordinator", and "tovholder".

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.

Background: Most cancer patients die at institutions despite their wish for home death. GP-related factors may be crucial in attaining home death., Aim: To describe cancer patients in palliative care at home and examine associations between home death and GP involvement in the palliative pathway., Design of Study: Population-based, combined register and questionnaire study., Setting: Aarhus County, Denmark., Method: Patient-specific questionnaires were sent to GPs of 599 cancer patients who died during a 9-month period in 2006. The 333 cases that were included comprised information on sociodemography and GP-related issues; for example knowledge of the patient, unplanned home visits, GPs providing their private phone number, and contact with relatives. Register data were collected on patients' age, sex, cancer diagnosis, place of death, and number of GP home visits. Associations with home death were analysed in a multivariable regression model with prevalence ratios (PR) as a measure of association., Results: There was a strong association between facilitating home death and GPs making home visits (PR = 4.3, 95% confidence interval [CI] = 1.2 to 14.9) and involvement of community nurses (PR = 1.4, 95% CI = 1.0 to 1.9). No other GP-related variables were statistically significantly associated with home death., Conclusion: Active involvement of GPs providing home visits and the use of home nurses were independently associated with a higher likelihood of facilitating home death for cancer patients. The primary care team may facilitate home death, accommodating patients' wishes. Future research should examine the precise mechanisms of their involvement.

Background: Studies of cancer survivors' rehabilitation needs have mostly addressed specific areas of needs, e.g. physical aspects and/or rehabilitation needs in relation to specific cancer types., Objective: To assess cancer survivors' perceived need for physical and psychosocial rehabilitation, whether these needs have been presented to and discussed with their GP., Methods: A survey among a cohort of cancer survivors approximately 15 months after diagnosis. The questionnaire consisted of an ad hoc questionnaire on rehabilitation needs and the two validated questionnaires, the SF-12 and the Research and Treatment of Cancer quality of life questionnaire, the QLQ C-30 version 3., Results: Among 534 eligible patients, we received 353 (66.1%) answers. Two-thirds of the cancer survivors had discussed physical rehabilitation needs with their GPs. Many (51%) feared cancer relapse, but they rarely presented this fear to the GP or the hospital staff. The same applied to social problems and problems within the family. Good physical and mental condition and low confidence in the GP were associated with no contact to the GP after hospital discharge., Conclusion: Cancer survivors have many psychosocial rehabilitation needs and intervention should effectively target these needs. If this task is assigned to the GPs, they need to be proactive when assessing psychosocial aspects.

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.

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.

Objective: This study explores former cancer patients' psychosocial rehabilitation needs after hospital discharge., Method: Three focus-group interviews with 15 patients., Results: Five main areas were identified: (1) Need for continuous support and information about rehabilitation opportunities; (2) Support to the family; (3) Psychological help also addressing fear of relapse of cancer; (4) Needs for social support; (5) Needs pertaining to how friends and acquaintances relate to the patients., Conclusion: Each of these aspects should be carefully considered for each patient, preferably by one assigned healthcare provider. Fear of cancer relapse prevails among the patients, the family and the social network and it is important in relation to psychosocial rehabilitation.

Introduction: Change of GP may imply that the patient is dissatisfied with the health service provided. The aim of this study was to investigate whether newly diagnosed cancer patients change their GP more often than other patient groups and the background population., Material and Methods: The investigation was conducted using data on inhabitants from the counties of Aarhus, Vejle and South Jutland. We included 900 Group 1 insured patients, aged 18-75 years, distributed into three groups: 1) frequent cancers, 2) rare cancers and 3) benign, but chronic or severe new diseases. The diagnoses included occurred for the first time at the time of inclusion. Three hundred controls were randomly selected from the regional health care registry in Aarhus. The study period was from March 1 to August 30 1994. A change of GP was defined as a change not caused by the patient's change of residence or the GP's change of practice registration number due to expansion, takeover or split up of practice., Results: In the three disease groups, 28 cases of change of GP were registered with a frequency of 5% (frequent cancers), 2.7% (rare cancers) and 1.7% (benign, but chronic or severe new diseases). The frequency in the background population was 2.7%. None of the differences were statistically significant., Discussion: During the first year following a cancer or chronic disease diagnosis, change of GP is rare, particularly among patients with rare cancers. We reject the hypothesis that change of GP is frequent among newly diagnosed cancer patients.

Objective: To investigate general practitioner (GP) assessment of a structured oncology information pack sent to GPs when newly referred patients had visited a department of oncology for the first time, and to compare their assessment of this material with their assessment of traditional information provided by the department., Design: Randomised, unblinded clinical trial., Setting: Patients and GPs in the catchment area of a regional oncology department., Subjects/patients: 248 cancer patients and their 199 GPs., Main Outcome Measures: GP assessment of the quality of the information material received for each patient., Results: 88.3% of the 248 questionnaires were returned. The structured information pack improved GP knowledge of oncology; GPs found themselves better equipped to support and counsel patients during the course of their illness, and practitioner satisfaction with the department rose., Conclusion: Intervention, though reasonably simple, inexpensive and not particularly time-consuming, improved cooperation between the specialist department and the GP. While this is a small step in the right direction, the need remains for new initiatives and further studies into how to improve cooperation and communication between the primary and secondary healthcare sectors.