Agreement between patient-reported and doctor-reported patient intervals and date of first symptom presentation in cancer diagnosis - a population-based questionnaire study.

BACKGROUND: The concept of delay in cancer diagnosis has been a scientific issue for decades, and there is still no standardised and validated way to measure the time intervals. One of the intervals that are difficult to measure is the patient interval (i.e. the period from the patient's first symptom until the first presentation to the health care system) because dates of symptom onset and first presentation are difficult to establish precisely. Further, since patients may have another experience of the diagnostic pathway than e.g. the general practitioner (GP), a reasonable question remains whether patients and GPs agree on these important milestones. The objective of this study was to analyse the agreement between patient-reported and GP-reported patient intervals and date of first presentation of cancer-related symptom(s) to the GP. METHODS: On the basis of a cohort study, we included incident cancer patients from the former Aarhus County from 1 September, 2004 to 31 August, 2005. Both patients and GPs reported the length of the patient interval and the date of the first presentation to the GP with a cancer-related symptom measured by self-administered questionnaires. Agreement was measured using agreement-survival plots and Lin's concordance correlation coefficient (CCC). RESULTS: There was full agreement between GP- and patient-reported patient intervals in 21.0% of all the cancer cases. In 50.1% of cases, patients and GPs agreed about the patient interval within a margin of one month. There was full agreement between GP- and patient-reported date of first presentation in 37.5% of the cancer cases and within one week in 52.0% of all the cancer cases. Overall, the agreement on the length of the patient interval was poor (CCC=0.513), but better for patients presenting with alarm symptoms. The agreement was moderate between GP- and patient-reported dates of first presentation (CCC=0.924). CONCLUSION: We found that GPs systematically reported a longer patient interval than patients did. We found moderate agreement on reported date of first presentation of symptoms to the GP, meaning that the disagreement in reported patient interval is related to date of first symptom rather than date of first presentation to the GP.

Open Access to General Practice Was Associated with Burnout among General Practitioners.

Walk-in open access in general practice may influence the general practitioner's (GP's) work, but very little research has been done on the consequences. In this study from Danish general practice, we compare the prevalence of burnout between GPs with a walk-in open access and those without. In a questionnaire study (2004), we approached all 458 active GPs in the county of Aarhus, Denmark, and 376 (82.8%) GPs returned the questionnaire. Walk-in open access was defined as at least 30 minutes every weekday where patients could attend practice without an appointment. Burnout was measured by the Maslach Burnout Inventory. Analyses using logistic regression were adjusted for gender, age, marital status, job satisfaction, minutes per consultation, practice organisation, working hours, number of listed patients per GP, number of contacts per GP, continuing medical education- (CME-) activities, and clusters of GPs. In all, 8% of GPs had open access and the prevalence of burnout was 24%. GPs with walk-in open access were more likely to suffer from burnout. Having open access was associated with a 3-fold increased likelihood of burnout (OR = 3.1 (95% CI: 1.1-8.8, P = 0.035)). Although the design cannot establish causality, it is recommended to closely monitor possible negative consequences of open access in general practice.

Congruence between preferred and actual place of care and death among Danish cancer patients.

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.

Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers.

BACKGROUND: The burden of caregiving can have various negative consequences. There is a need for health professionals to be able to measure the burden of caregiving among relatives of end-stage cancer patients in a valid way. The Burden Scale for Family Caregivers (BSFC) has 28 items and was developed as a clinical tool for measuring the self-reported burden among family caregivers caring for a relative at home. AIM: To make a standardized translation of the English version of the BSFC into a Danish version and to report data quality in a group of Danish family caregivers caring for palliative care cancer patients. MATERIAL AND METHOD: The BSFC was translated following WHO guidelines. Ninety family caregivers of end-stage cancer patients were sent BSFC as part of a larger questionnaire. A total of 75 (83%) returned the questionnaire. Excluding responses with two or more missing items, 58 (64%) participants completed the BSFC. RESULTS: The words 'care', 'caregiving' and 'caregiver' were a challenge to the translators. The item response was moderate with missing answers from 4.0 to 18.7%. For the total sum-score, mean perceived burden amongst participants was low (mean score 23.56 of max 84.00). Cronbach's alpha was 0.91 and average inter-item correlation 0.26. Item-rest correlations ranged from -0.02 to 0.72 and were below 0.40 for seven items. High scores on the BSFC was statistically significantly correlated with the feeling of social isolation (ρ = -0.332, p = 0.013) and with the dyspnoea subscale of the EORTC-QLQ-15-PAL (ρ = 0.322, p = 0.012) but not with poor self-reported health (ρ = -0.036, p = 0.805). CONCLUSION: The BSFC was translated into Danish and showed problems with some data quality and validity measures. Hence, further psychometric testing on a larger population is needed before the scale can be recommended as a sum-scale for scientific and clinical use.

Developing an algorithm to identify people with Chronic Obstructive Pulmonary Disease (COPD) using administrative data.

BACKGROUND: An important prerequisite for the Chronic Care Model is to be able to identify, in a valid, simple and inexpensive way, the population with a chronic condition that needs proactive and planned care. We investigated if a set of administrative data could be used to identify patients with Chronic Obstructive Pulmonary Disease in a Danish population. METHODS: Seven general practices were asked to identify patients with known Chronic Obstructive Pulmonary Disease in their practices. For the 266 patients (population A), we used administrative data on hospital admissions for lung-related diagnoses, redeemed prescriptions for lung-diseases drugs and lung- function tests combined to develop an algorithm that identified the highest proportion of patients with Chronic Obstructive Pulmonary Disease with the fewest criteria involved. We tested nine different algorithms combining two to four criteria. The simplest algorithm with highest positive predictive value identified 532 patients (population B); with possible diagnosis of Chronic Obstructive Pulmonary Disease in five general practices. The doctors were asked to confirm the diagnosis. The same algorithm identified 2,895 patients whom were asked to confirm their diagnosis (population C). RESULTS: In population A the chosen algorithm had a positive predictive value of 72.2 % and three criteria: a) discharged patients with a chronic lung-disease diagnosis at least once during the preceding 5 years; or b) redeemed prescription of lung-medication at least twice during the preceding 12 months; or c) at least two spirometries performed at different dates during the preceding 12 months. In population B the positive predictive value was 65.0 % [60.8;69.1 %] and the sensitivity 44.8 % [41.3;48.4 %)] when the "uncertain" were added to where doctors agreed with the diagnosis. For the 1,984 respondents in population C, the positive predictive value was 72.9 % [70.8;74.8 %] and the sensitivity 29.7 % [28.4;31.0 %]. CONCLUSIONS: An algorithm based on administrative data has been developed and validated with sufficient positive predictive value to be used as a tool for identifying patients with Chronic Obstructive Pulmonary Disease. Some of the identified patients had other chronic lung-diseases (asthma). The algorithm should mostly be regarded as a tool for identifying chronic lung-disease and further development of the algorithm is needed. TRIAL REGISTRATION: www.clinicaltrials.gov (NCT01228708).

Socioeconomic position and place of death of cancer patients.

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.

Adaptation, data quality and confirmatory factor analysis of the Danish version of the PACIC questionnaire.

BACKGROUND: The Patient Assessment of Chronic Illness Care (PACIC) 20-item questionnaire measures how chronic care patients perceive their involvement in care. We aimed to adapt the measure into Danish and to assess data quality, internal consistency and the proposed factorial structure. METHODS: The PACIC was translated by a standardised forward-backward procedure, and filled in by 560 patients receiving type 2 diabetes care. Data quality was assessed by mean, median, item response, missing values, floor and ceiling effects, internal consistency (Cronbach's α and average inter-item correlation), item-rest correlations and factorial structure was assessed by confirmatory factor analysis (CFA). RESULTS: The item response was high (missing answers: 0.5-2.9%). Floor effect was 2.7-69.2%, above 15% for 17 items. Ceiling effect was 4.0-40.4%, above 15% for 12 items. The subscales had average inter-item correlations over 0.30 and CFA showed high factor loadings (range 0.67-0.77). All had α over 0.7 and included items with both high and low loadings. The CFA model fit was good for two indices out of six (TLI and SRMR). CONCLUSIONS: Danish PACIC is now available and validated in primary care in a type 2 diabetes population. The psychometric properties were satisfactory apart from ceiling and floor effects. We endorse the proposed five scale structure. All the subscales showed good model fit, and may be used for separate sum scores.

Time intervals from first symptom to treatment of cancer: a cohort study of 2,212 newly diagnosed cancer patients.

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.

General practitioner characteristics and delay in cancer diagnosis. a population-based cohort study.

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).

Who is the key worker in palliative home care?

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.

Case-finding and risk-group screening for depression in primary care.

OBJECTIVE. Central health organizations suggest routine screening for depression in high-risk categories of primary care patients. This study compares the effectiveness of high-risk screening versus case-finding in identifying depression in primary care. DESIGN. Using an observational design, participating GPs included patients from 13 predefined risk groups and/or suspected of being depressed. Patients were assessed by the Major Depression Inventory (MDI) and ICD-10 criteria. Setting. Thirty-seven primary care practices in Mainland Denmark. Main outcome measures. Prevalence of depression, diagnostic agreement, effectiveness of screening methods, risk groups requiring special attention. RESULTS. A total of 37 (8.4%) of 440 invited GP practices participated. We found high-risk prevalence of depression in 672 patients for the following traits: (1) previous history of depression, (2) familial predisposition to depression, (3) chronic pain, (4) other mental disorders, and (5) refugee or immigrant. In the total sample, GPs demonstrated a depression diagnostic sensitivity of 87% and a specificity of 67% using a case-finding strategy. GP diagnoses of depression agreed well with the MDI (AUC values of 0.91-0.99). The potential added value of high-risk screening was 4.6% (31/672). Patients with other mental disorders were at increased risk of having an unrecognized depression (PR 3.15, 95% CI 1.91-5.20). If patients with other mental disorders were routinely tested, then 42% more depressed patients (14/31) would be recognized. CONCLUSIONS. A broad case-finding approach including a short validation test can help GPs identify depressed patients, particularly by including patients with other mental disorders in this strategy. This exploratory study cannot support the screening strategy proposed by central health organizations.

Identifying bereaved subjects at risk of complicated grief: Predictive value of questionnaire items in a cohort study.

BACKGROUND: Bereavement is a condition which most people experience several times during their lives. A small but noteworthy proportion of bereaved individuals experience a syndrome of prolonged psychological distress in relation to bereavement. The aim of the study was to develop a clinical tool to identify bereaved individuals who had a prognosis of complicated grief and to propose a model for a screening tool to identify those at risk of complicated grief applicable among bereaved patients in general practice and palliative care. METHODS: We examined the responses of 276 newly bereaved individuals to a variety of standardised and ad hoc questionnaire items eight weeks post loss. Inventory of Complicated Grief (ICG-R) was used as a gold standard of distress at six months after bereavement. Receiver operating characteristic (ROC) curves analysis was performed for all scales and items regarding ICG-R score. Sensitivity, specificity and area under curve (AUC) were calculated for scales and items with the most promising ROC curve analyses. RESULTS: Beck's Depression Inventory (BDI) was the scale with the highest AUC (0.83) and adding a single item question ('Even while my relative was dying, I felt a sense of purpose in my life') gave a sensitivity of 80% and specificity of 75%. The positive/negative predictive values for this combination of questions were 70% and 85%, respectively. With this screening tool bereaved people could be categorized into three groups where group 1 had 7%, group 2 had 23% and group 3 had 64% propensity of suffering from complicated grief six months post loss. CONCLUSIONS: This study shows that the BDI in combination with a single item question eight weeks post loss may be used for clinical screening for risk of developing complicated grief after six months. The feasibility and clinical implications of the screening tool has to be tested in a clinical setting.

Preference for place-of-death among terminally ill cancer patients in Denmark.

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.

Impact of intensified testing for urogenital Chlamydia trachomatis infections: a randomised study with 9-year follow-up.

BACKGROUND: DNA amplification assays are increasingly being used to facilitate the testing of asymptomatic individuals for urogenital Chlamydia trachomatis. The long-term clinical benefit in terms of avoided infertility and ectopic pregnancy is unknown. METHODS: In 1997, 15,459 women and 14,980 men aged 21-23 years were living in Aarhus County, Denmark. A random sample of 4000 women and 5000 men was contacted by mail and offered the opportunity to be tested for C trachomatis by means of a sample obtained at home and mailed directly to the laboratory. The remaining 11,459 women and 9980 men received usual care and constituted the control population. All men and women were subsequently followed for 9 years by the use of Danish health registers. Data were collected on pelvic inflammatory disease (PID), ectopic pregnancy (EP), infertility diagnoses, in-vitro fertilisation (IVF) treatment and births in women, and on epididymitis in men. The intervention and control groups were compared using Cox regression analyses and the intention-to-screen principle. RESULTS: Among women, no differences were found between the intervention group and the control group: HR (95% CI) for PID 1.12 (0.70 to 1.79); EP 0.97 (0.63 to 1.51); infertility 0.87 (0.71 to 1.07); IVF treatment 0.88 (0.62 to 1.26) and births 1.02 (0.95 to 1.10). In men, the HR for epididymitis was 1.25 (0.70 to 2.24). CONCLUSIONS: A population-based offer to be tested for urogenital C trachomatis infection by the use of non-invasive samples and DNA amplification did not reduce the long-term risk of reproductive complications in women or of epididymitis in men.

Associations between successful palliative trajectories, place of death and GP involvement.

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.

Associations between successful palliative cancer pathways and community nurse involvement.

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.

Associations between home death and GP involvement in palliative cancer care.

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.

Translation, adaptation and validation of the American short form Patient Activation Measure (PAM13) in a Danish version.

BACKGROUND: The Patient Activation Measure (PAM) is a measure that assesses patient knowledge, skill, and confidence for self-management. This study validates the Danish translation of the 13-item Patient Activation Measure (PAM13) in a Danish population with dysglycaemia. METHODS: 358 people with screen-detected dysglycaemia participating in a primary care health education study responded to PAM13. The PAM13 was translated into Danish by a standardised forward-backward translation. Data quality was assessed by mean, median, item response, missing values, floor and ceiling effects, internal consistency (Cronbach's alpha and average inter-item correlation) and item-rest correlations. Scale properties were assessed by Rasch Rating Scale models. RESULTS: The item response was high with a small number of missing values (0.8-4.2%). Floor effect was small (range 0.6-3.6%), but the ceiling effect was above 15% for all items (range 18.6-62.7%). The alpha-coefficient was 0.89 and the average inter-item correlation 0.38. The Danish version formed a unidimensional, probabilistic Guttman-like scale explaining 43.2% of the variance. We did however, find a different item sequence compared to the original scale. CONCLUSION: A Danish version of PAM13 with acceptable validity and reliability is now available. Further development should focus on single items, response categories in relation to ceiling effects and further validation of reproducibility and responsiveness.

Cancer survivors' rehabilitation needs in a primary health care context.

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.

Data quality and confirmatory factor analysis of the Danish EUROPEP questionnaire on patient evaluation of general practice.

OBJECTIVE: The Danish version of the 23-item EUROPEP questionnaire measuring patient evaluation of general practice has not been evaluated with regard to psychometric properties. This study aimed to assess data quality and internal consistency and to validate the proposed factorial structure. SETTING: General practice in Denmark. SUBJECTS: A total of 703 general practitioners (GPs). Some 83,480 questionnaires were distributed to consecutive patients aged 18 or more attending practice during the daytime. A total of 56,594 eligible patients responded (67.8%). MAIN OUTCOME MEASURES: Data quality (mean, median, item response, missing, floor and ceiling effects), internal consistency (Cronbach's alpha and average inter-item correlation), item-rest correlations. Model fit from confirmatory factor analysis (CFA). RESULTS: The distribution was skewed to the left for almost all items with a small floor effect (0.1-9.3%) and a ceiling effect larger than 15% (18.6-56.3%). Item response was high. For seven items "not applicable/relevant" represented more than 10% of the answers. Internal consistency was good. Item-rest correlations were below 0.60 for three items, and four items had lower correlations with their own domain than with other domains. CFA showed that four domains were highly correlated and that model fit was good for two indices (TLI and SRMR), acceptable for one index (CFI), and poor for three indices (chi-squared, RMSEA and WRMR). CONCLUSIONS: This study revealed high ceiling effects, a few items with low item-rest correlation and low item discriminant validity, and an uncertain model fit. There seems to be a need for developing response categories to bring down the ceiling effect and it is also unclear how to use the proposed domains. Future research should focus on evaluating the factorial structure when ceiling effect has been lowered, on whether items should be deleted, and on assessing the unidimensionality of each domain.