Ineta Sokolowski

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

BackgroundDelay 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.MethodsPopulation-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.ResultsMedian 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)).ConclusionSystem 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.

Mycoplasma genitalium: prevalence and behavioural risk factors in the general population

Background:Mycoplasma genitalium has been shown to cause urethritis in men and cervicitis in women and may also be a causative agent in female infertility. Objective: To estimate the prevalence of urogenital M genitalium infection and identify sexual behavioural risk factors in the general population. Methods: Participating individuals were 731 men and 921 women aged 21–23 years and not seeking the healthcare system because of symptoms. They answered questionnaires on sexual behaviour and provided samples for M genitalium testing. Results: In women aged 21–23 years, the prevalence of infection was 2.3% (21/921) and in men of the same age it was 1.1% (8/731). For both sexes, an increasing number of partners was associated with a greater chance of being infected. Among women a shorter duration of a steady relationship and having a partner with symptoms was associated with being infected, and for men younger age at first intercourse was associated with M genitalium infection. Conclusions: We conclude that the prevalence of infection in the general population is too low for population-based screening. However, the development of test algorithms based on behavioural risk factors is a promising alternative.

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

BackgroundThe 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.Methods358 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 (Cronbachs alpha and average inter-item correlation) and item-rest correlations. Scale properties were assessed by Rasch Rating Scale models.ResultsThe 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 α-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.ConclusionA 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.

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.

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

BackgroundAn 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.MethodsSeven 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).ResultsIn 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 %].ConclusionsAn 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 registrationwww.clinicaltrials.gov (NCT01228708)

Who is the key worker in palliative home care

Abstract 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.

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

Abstract 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.

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 (Cronbachs 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.

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 (Cronbachs 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.

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

Abstract 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.