Rectal Cancer and Quality of Life. Aspects on Communication and Patient Education

Background This thesis reports the results of three studies based on a pro-spective cohort study of an unselected population of patients with rectal cancer, and one study based on an exploratory study of a new patient edu-cation method as preparation for colorectal cancer surgery. The aim of study I was to investigate whether patient’s or doctor’s delay had an impact on quality of life at diagnosis, and in study III the development of quality of life after treatment for rectal cancer was investigated. The aim of study II was to explore the patient’s experience of communication before, during and after diagnosis of rectal cancer. Study IV used another patient cohort and explored the experience of patients participating in a new patient edu-cation method, before treatment for colorectal cancer. Methods In study I, II and III data from a repeated-measures longitudinal study was used. In study IV, data on information and patient education was taken from a cohort study of patients planned for surgery for colorectal cancer. The statistical methods of study II and IV were descriptive and in study I and III regression models were used. Results Despite that patients did not get information on the planned treat-ment’s possible side-effects on the urinary and sexual function, the patients reported good communication with their surgeon. Timely access to treat-ment for rectal cancer did not have an effect on quality of life when consid-eration was taken to depression and negative intrusive thoughts. The quality of life was recovered to the same as the reference population after 12 months, but bother from urinary, stoma and bowel function hampered quality of life for the individual. Patients attending a group consultation be-fore surgery for colorectal cancer appreciated the group setting and re-ported that it increased their sense of control and active participation in their treatment. Conclusion Information on potential side-effects of rectal cancer treatment is lacking. The preoperative group consultation as a method for patient edu-cation, seems like a feasible complement to the standard consultation to give information before colorectal cancer surgery

Agreement between patient reported outcomes and clinical reports after radical prostatectomy - A prospective longitudinal study

Background: In clinical research information can be retrieved through various sources. The aim is to evaluate the agreement between answers in patient questionnaires and clinical reports in a study of patients after radical prostatectomy and patient characteristics associated with agreement between these two data sources. Methods: In the prospective non-randomized longitudinal trial LAParoscopic Prostatectomy Robot Open (LAPPRO) 4003 patients undergoing radical prostatectomy at 14 centers in Sweden were followed. Analysis of agreement is made using a variety of methods, including the recently proposed Gwet's AC1, which enables us to handle the limitations of Cohen's Kappa where agreement depends on the underlying prevalence. Results: The incidence of postoperative events was consistently reported higher by the patient compared with the clinical reports for all outcomes. Agreement regarding the absence of events (negative agreement) was consistently higher than agreement regarding events (positive agreement) for all outcome variables. Overall impression of agreement depends on which measure used for the assessment. The previously reported desirable properties of Gwet's AC1 as well as the patient characteristics associated with agreement were confirmed. Conclusion: The differences in incidence and agreement across the different variables and time points highlight the importance of carefully assessing which source of information to use in clinical research. Trial registration: ISRCTN06393679 (www.isrctn.com). Date of registration: 07/02/2008. Retrospectively registered

Patients with rectal cancer are satisfied with in-hospital communication despite insufficient information regarding treatment alternatives and potential side-effects

<p><b>Aim:</b> Patients with rectal cancer may undergo treatment such as surgery and (chemo)radiotherapy. Before treatment, patients are informed of different options and possible side-effects. The aim of the study was to evaluate the patients’ experience of communication with healthcare personnel at time of diagnosis and after one year.</p> <p><b>Method:</b> A total of 1085 patients from Denmark and Sweden were included. They answered a detailed questionnaire at diagnosis and at the one year follow-up. Clinical data were retrieved from national quality registries.</p> <p><b>Results:</b> Response rates were 87% at baseline and 74% at one year. Overall the patients were very satisfied with the communication with healthcare personnel. However, some patients reported insufficient information regarding treatment options and possible side-effects. Only 32% (335/1050) and 24% (248/1053), respectively, stated that they were informed about possible sexual and urinary dysfunction before treatment.</p> <p><b>Conclusions:</b> Even though patients felt that they received insufficient information regarding side-effects on sexual and urinary function, they were generally satisfied with the communication with the healthcare personnel. Since overall satisfaction with the level of information was very high, it is unlikely that further information to patients with rectal cancer in the surgical and oncological settings will improve satisfaction with communication.</p