Sandra Elnegaard

Survival after stage IA endometrial cancer; can follow-up be altered? A prospective nationwide Danish survey.

Objective. To present Danish national survival data on women with early stage endometrial cancer and use these data to discuss the relevance of postoperative follow‐up. Design. Prospective study. Setting. Danish Endometrial Cancer Study (DEMCA). Population. Five hundred and seventy‐one FIGO stage IA (1988 classification) endometrial cancer patients prospectively included between 1986 and 1999. All patients had total abdominal hysterectomy and bilateral salpingo‐oophorectomy without adjuvant therapy. Methods. The patient and the disease characteristics were drawn from the DEMCA database with cross‐references to the national death registry and the national pathology database. Statistical methods included Kaplan–Meier, log‐rank and Cox regression analysis. Main outcome measures. Survival rates in relation to histopathology. Results. The five year overall survival rate was 88.9% and five year disease‐specific survival was 97.3%. Patients with low‐ (91.8%) and high‐risk histopathology (8.2%) were compared. The age‐adjusted overall and disease‐specific survival differed significantly between women with low‐ and high‐risk histopathology (p = 0.039 and p = 0.004, respectively). The disease‐specific survival adjusted for age between patients with well‐differentiated endometrioid tumors differed from those with moderately differentiated tumors (p = 0.008, hazard ratio = 3.75, 95% confidence interval 1.41–10.00). Recurrence data were available on 464 patients. Twenty‐three (3.9%) experienced recurrence. Of these recurrences, 15 of 23 (65%) were vaginal. Death from recurrence was observed in nine of 23 (39%) patients, and five of these nine had vaginal recurrences. Conclusions. Women with FIGO stage IA endometrial cancer have a very high disease‐specific five year survival. Survival was related to histopathology. Follow‐up at a highly specialized tertiary care center for patients with an extremely good prognosis may be questioned.

The Danish Symptom Cohort: Questionnaire and Feasibility in the Nationwide Study on Symptom Experience and Healthcare-Seeking among 100 000 Individuals

Introduction. In order to develop strategies to prevent delay in diagnosis, it is important to gain knowledge of symptoms and healthcare-seeking processes in the population. This paper describes a combined survey and register-based study with (1) focus on development of a questionnaire concerning experience of symptoms and subsequent consequences and (2) feasibility of the study. Methods. The study is a nationwide cohort study of 100 000 individuals randomly selected from the Danish general population. A comprehensive questionnaire concerning experience of symptoms and subsequent consequences was developed. The methodological framework for the development included defining the domains to be measured, identification of previous items, scales and questionnaires in the literature, and pilot and field testing. Results. A total of five domains and 16 subdomains were defined covering the area of symptom experience, symptom characteristics, reaction in response to symptom experience, external factors, and personality characteristics with potential influence on the symptom experience. In total, 49 706 questionnaires were completed, yielding a response rate of 52.2%. Conclusion. We developed a comprehensive questionnaire used in a large combined survey and register-based study concerning experience of symptoms and subsequent consequences of symptom experiences. We succeeded in conducting a large survey providing the groundwork for The Danish Symptom Cohort.

Specific and non-specific symptoms of colorectal cancer and contact to general practice

BACKGROUND To improve survival rates for colorectal cancer, referral guidelines have been implemented. First step in the diagnostic process is for the individual to recognize the symptoms and contact his/her general practitioner (GP) for evaluation. OBJECTIVES To determine (i) the prevalence of specific and non-specific symptom experiences indicative of colorectal cancer, (ii) the proportion of subsequent contacts to GPs, (iii) to explore the possible differences in symptom experience and contact to GPs between age and sex. METHODS A nationwide study of 100000 adults, aged 20 years and older, were randomly selected in the general population and invited to participate in an internet-based survey. Items regarding experience of specific and non-specific alarm symptoms of colorectal cancer within the preceding 4 weeks and contact to GP were included. RESULTS A total of 49706 subjects completed the questionnaire. Abdominal pain was the most common specific alarm symptom (19.7%) and tiredness was the most common non-specific symptom (49.8%). The experiences of symptoms were more common among women and more common in the youngest age groups for both sexes. The symptom leading to the highest proportion of GP contacts was rectal bleeding (33.8%). When experiencing any combination of two specific alarm symptoms, the proportion who contacted a GP was less than 50%. The combination of a non-specific and a specific alarm symptom gave rise to the highest proportion of GP contacts. CONCLUSION Although specific and non-specific alarm symptoms of colorectal cancer are common in the general population, the proportion of GP contacts is low.

Urological symptoms among 23,240 men in the general danish population – concerns about symptoms, their persistence and influence on primary care contacts

Abstract Objective: To analyse possible associations between men’s likelihood of contacting a general practitioner (GP) for urological symptoms and the persistence of the symptoms, the influence on daily activities and the level of concern about the symptoms. Design: Web-based nationwide cross-sectional questionnaire study. Setting: The general population in Denmark. Subjects: 48,910 randomly selected men aged 20+ years. Main outcome measures: Urological symptom prevalence and odds ratios for GP contact with urological symptoms in regard to concern for the symptom, influence on daily activities and the persistence of the symptom. Results: Some 23,240 men responded to the questionnaire, yielding a response rate of 49.8%. The prevalence of at least one urological symptom was 59.9%. Among men experiencing at least one urological symptom almost one-fourth reported contact to general practice regarding the symptom. Approximately half of the symptoms reported to be extremely concerning were discussed with a GP. Conclusion: Increased symptom concern, influence on daily activities and long-term persistence increased the likelihood of contacting a GP with urological symptoms. This research points out that guidelines for PSA testing might be challenged by the high prevalence of urological symptoms. Key points  The decision process of whether to contact the general practitioner (GP) is influenced by different factors, but contradictory results has been found in triggers and barriers for help-seeking with urological symptoms.   • Increased symptom concern, influence on daily activities and long-term persistence consistently increased the likelihood of contacting a general practitioner with urological symptoms in men.   • Only 50% of the symptoms reported to be extremely concerning were however discussed with the GP.   • Guidelines for PSA testing might be challenged by the high prevalence of urological symptoms.

Barriers to contacting general practice with alarm symptoms of colorectal cancer: a population-based study

Background A prerequisite for general practitioners (GPs) being able to refer patients with cancer alarm symptoms for further investigations is that individuals present to the GP. Knowledge of barriers to help-seeking is, however, sparse. Objectives. The aim of this study was to analyse associations between the experience of recent-onset alarm symptom of colorectal cancer and four different barriers towards GP contact. Methods A nationwide web-based cohort survey was conducted in 100000 individuals aged 20 years or above, randomly selected from the Danish Civil Registration System. Items regarding experience of four predefined alarm symptoms of colorectal cancer (rectal bleeding, abdominal pain, change in stool texture and change in stool frequency), decisions about contact to GPs and barriers towards GP contact were included. Results A total of 37455 respondents over 40 years (51.8%) completed the questionnaire. The proportion of individuals with no contact to the GP varied between 69.8% and 79.8% for rectal bleeding and change in stool frequency, respectively. The most widely reported barriers were being worried about wasting the doctors time and being too busy to make time to visit the doctor. Men with rectal bleeding significantly more often reported being worried about what the doctor might find. The proportion of individuals who reported barriers was, in general, higher among the youngest age group. Conclusion Barriers to contacting the GP were frequent when experiencing alarm symptoms of colorectal cancer. Reporting the different barriers was significantly associated with gender and age.

Lifestyle, socioeconomic status and healthcare seeking among women with gynaecological cancer alarm symptoms: a combined questionnaire-based and register-based population study

Objectives To determine the proportion of contacts to general practitioner (GP) with recent onset gynaecological cancer alarm symptoms (pelvic pain, postmenopausal bleeding, bleeding during intercourse or pain during intercourse) and to analyse the associations between lifestyle factors, socioeconomic status and GP contact for these symptoms. Design Cross-sectional survey combined with data from national registers. Setting The general Danish population. Participants A total of 25 866 non-pregnant women ≥20 years completed the survey. Women reporting at least one of four gynaecological alarm symptoms within the preceding 6 months form the study base (n=2957). Results The proportion of women reporting GP contact ranged from 21.1% (pain during intercourse) to 32.6% (postmenopausal bleeding). Women aged 60+ years had higher odds of reporting GP contact for at least one of the four gynaecological cancer alarm symptoms compared with those aged 20–39 years (OR 2.56, 95% CI 1.69 to 3.89), and immigrants had higher odds of reporting GP contact for at least one of the symptoms (OR 1.56, 95% CI 1.13 to 2.15) compared with ethnic Danish individuals. Among those reporting postmenopausal bleeding and/or bleeding during intercourse, women in the age group 60+ years had higher odds of reporting GP contact compared with those aged 20–39 years (OR 2.79, 95% CI 1.33 to 5.87). A high educational level (>12 years) was positively associated with reporting GP contact for postmenopausal bleeding and/or bleeding during intercourse compared with a low educational level (<10 years) (OR 2.23, 95% CI 1.19 to 4.19). No associations were found with lifestyle factors. Conclusions Few women contacted their GP with recent onset gynaecological cancer alarm symptoms. Higher age, being immigrant and higher educational level increased the odds of GP contact. Future studies should explore the reasons for these findings as this may aid in prompting early diagnosis and thereby improve the prognosis of gynaecological cancer.

What triggers healthcare-seeking behaviour when experiencing a symptom? Results from a population-based survey

Background The decision process of whether or not to contact the GP is influenced by different factors which have not all been well examined. Aim The aim of this study was to analyse whether contact to the GP is associated with concern about the symptom, influence on daily activities and symptom burden, such as the total number of symptoms experienced by each person in a general population. Design & setting This Danish nationwide cross-sectional study comprises a random sample of 100 000 people, representative of the adult Danish population ≥20 years. Method Baseline data were collected in a web-based survey conducted from June to December 2012. Results In total 49 706 (52.5%) individuals answered the questionnaire; 45 483 (91.5%) individuals experienced at least one of 44 predefined symptoms during the 4 weeks preceding the completion of the questionnaire. They reported 268 772 symptom experiences of which 58 370 symptoms (21.7%) resulted in contact with a GP. A high level of concern and influence on daily activities was associated with significantly higher odds for GP contact. A high burden of symptoms was associated with lower odds of contact with the GP. Conclusion Approximately every fifth symptom reported by individuals from the general population leads to GP contact. Influence on daily activities, burden of symptoms, and concern about the symptom were significant factors associated with the decision of whether to contact the GP. No overall association between sex and GP contact was observed.

Activation of professional and personal network relations when experiencing a symptom: a population-based cross-sectional study

Objective To describe patterns of disclosure of symptoms experienced among people in the general population to persons in their personal and/or professional network. Design A population-based cross-sectional study. Data were collected from a web-based survey. Setting The general population in Denmark. Participants 100 000 individuals randomly selected, representative of the adult Danish population aged ≥20 years were invited. Approximately 5% were not eligible for inclusion. 49 706 (men=23 240; women=26 466) of 95 253 eligible individuals completed the questionnaire; yielding a response rate of 52.2%. Individuals completing all questions regarding social network relations form the study base (n=44 313). Primary and secondary outcome measures Activation of personal and/or professional relations when experiencing a symptom. Results The 44 313 individuals reported in total 260 079 symptom experiences within the last 4 weeks. No professional network relation was used in two-thirds of all reported symptoms. The general practitioner (GP) was the most frequently reported professional relation activated (22.5%). People reporting to have available personal relations were slightly less inclined to contact the GP (21.9%) when experiencing a symptom compared with people with no reported personal relations (26.8%). The most commonly activated personal relations were spouse/partner (56.4%) and friend (19.6%). More than a quarter of all reported symptom experiences was not shared with anyone, personal nor professional. The symptom experiences with the lowest frequency of network activation were symptoms such as black stool, constipation, change in stool texture and frequent urination. Conclusion This study emphasises variation in the activation of network relations when experiencing a symptom. Symptoms were shared with both personal and professional relations, but different patterns of disclosures were discovered. For symptoms derived from the urogenital or colorectal region, the use of both personal and professional relations was relatively small, which might indicate reticence to involve other people when experiencing symptoms of that nature.

Lifestyle factors and experience of respiratory alarm symptoms in the general population

Background The first step in the diagnosis of lung cancer is for individuals in the general population to recognise respiratory alarm symptoms (RAS). Knowledge is sparse about RAS and factors associated with experiencing RAS in the general population. This study aimed to estimate the prevalence of RAS in the general population, and to analyse possible associations between lifestyle factors and experiencing RAS. Methods A web-based survey comprising 100 000 individuals randomly selected from the Danish Civil Registration System. Items regarding experience of RAS (prolonged coughing, shortness of breath, coughing up blood and prolonged hoarseness) and self-reported lifestyle factors (smoking status, alcohol intake and body mass index) were included in the analysis. Results A total of 49 706 individuals completed the questionnaire. 16 per cent reported at least one RAS. Prolonged coughing (8.4%) and shortness of breath (8%) were most prevalent, while coughing up blood was least prevalent (0.1%). More men than women reported RAS (p<0.001). Odds of reporting RAS increased with age (Ptrend<0.001). In men and women, former and current smoking was associated with reporting at least one RAS (former smoking: ORmen=1.42, 95% CI 1.39 to 1.56; ORwomen=1.25, 95% CI 1.15 to 1.36; current smoking: ORmen=2.58, 95% CI 2.35 to 2.83; ORwomen=2.45, 95% CI 2.25 to 2.68). Individuals who were underweight or obese were significantly more likely to report at least one RAS. Odds of reporting at least one RAS increased with increasing alcohol intake for both genders (Ptrend<0.001). Conclusions RAS are common in the general population. Men experience more symptoms than women, and prevalence increases with age. Being a former or current smoker and being underweight or obese are positively associated with experiencing RAS. The likelihood of experiencing RAS increases with increasing alcohol intake. Future research should investigate healthcare seeking for RAS among individuals with different lifestyles.