We conducted a cross-sectional survey using a questionnaire. Data were collected through telephone interviews. If no contact was established, two more phone calls were made, but no further attempts were made to obtain an answer.
The study was performed in a Swedish county with both rural and urban areas and a total of 420 000 inhabitants. There were in total three hospitals with acute admissions: a small district hospital, a hospital in a medium-sized industrial city, and a University Hospital. The patients were identified through the county council's register of care from April 2009 to June 2009. The time between we received the names from the local patient register and the time we attempted to interview was between two weeks and at most, approximately three months.
Using the SNCE-definition a consecutive sample of elderly patients was defined and a total of 328 were found. Thirty-one patients without a telephone were excluded, leaving 297 patients to receive a questionnaire. We did not have any additional exclusion criteria, which meant that we attempted to phone even very ill and hospitalised patients. The questionnaire included questions with up to six alternatives, which can be difficult to handle in a telephone interview. To give the patients a chance to read the questions and consider their answers, we posted the questionnaires to them at home 3-7 days before the interview.
The intention was to study both the degree of control, i.e. the role that elderly patients with co-morbidities wish to assume in participating in medical decision making during their most recent hospitalisation, and the role they actually had. For this, a modified version of the Control Preference Scale (CPS) was used . The modification consisted of an additional alternative response to the question about actual degree of control in decision making: "I was not asked for my opinion". This modification was found to be important for the aim of the study and was therefore in-corporated. The validated questions from the rest of the Control Preference Scale were also used. The CPS measures the degree of control that an individual wants to assume when decisions are being made about medical treatment and was originally developed as a card sorting technique with pictures describing the different roles the patient and doctor can assume in medical decision making, but today data collection varies. As in several previous studies we chose a telephone interview [10, 17, 20, 21]. The possible responses range from the individual making the treatment decision alone, through the individual making the decision jointly with the physician, to the physician making the decision:
I prefer to make the final selection of which treatment I will receive.
I prefer to make the final selection after seriously considering my doctor's opinion.
I prefer that my doctor and I share responsibility for deciding what treatment is best.
I prefer that my doctor make the final decision but consider my opinion.
I prefer to leave all decisions regarding treatment to my doctor.
After asking about the preferred role, we asked about the actual role during the most recent hospitalisation, using the same items and modifying the CPS scale with the addition:
I was not asked for my opinion.
The response options for the patient's preferred information seeking were:
A. I ask questions about my medical treatment without hesitating.
B. I would like to receive more information about my treatment without having to ask.
C. I find it difficult to ask questions about my treatment.
Again, we also asked about the actual information seeking during the patient's last hospital stay, with the following response alternatives:
A. I asked for information about my medical treatment.
B. I would like to have had more information.
C. I did not want to know about my medical treatment.
To quantify the barriers to participation in medical decision making, we formulated four items based on a qualitative study of a similar patient population .
Did you feel too ill to be able to take part in the medical decision making?
Did you feel that there were too many doctors who were deciding about your treatment?
Did you have problems understanding the medical information?
Did you have problems understanding things due to doctors speaking Swedish with an accent?
To estimate the importance of these barriers, all the patients who answered "Yes" or "Don't know" to any of the questions about barriers were further asked whether the barrier affected them "a little", "somewhat", or "a lot".
The questionnaire was first tested on six healthy individuals, to ensure that it was usable in a telephone interview. It was then revised and discussed in an expert panel of five, all with more than 15 years of experience in geriatric care and research to get consensus on the formulations of the questions. Finally, the questions were tested on four elderly people with co-morbidities, who proved to be able to answer the questions without difficulty.
If the interviewer suspected that the patient did not understand the questions due to dementia or other illnesses, they asked follow-up questions adapted to the patient's previous answers. Patients were excluded when no understandable answers were received.
To evaluate differences between the responding and non-responding groups, we used the Student t-test regarding age and Pearson's chi-square test regarding gender. In the responding group, we further analysed differences in CPS rating and way of information seeking between the categorical variables age, gender, and education, using Pearson's chi-square test. Age was categorised into three age groups of the same size: ≤79, 80-85, and > 85. Student t-tests and Pearson's chi-square tests were performed at a significance level of 5% using version 17.0 of the SPSS software package.
The patients' preferred and actual roles in medical decision making and preferred and actual way of information seeking are presented as percentages, as are their reported barriers to participation in medical decision making.
Discrepancies between preferred and actual roles concerning medical decision making were calculated by subtracting the actual role score from the preferred role score, to give a discrepancy score for each patient centred on 0 (no discrepancy) and ranging from -4 (preferred the most active role but all decisions were made by the doctor) to +4 (preferred the most passive role but the patient had to make the decision on their own). These possible dissimilarities between the preferred and actual role were also analysed as agreement by weighted kappa (κw). The κw value is presented together with a 95% confidence interval (CI). There are no absolute definitions of the interpretation of κw, but the values are usually interpreted as poor if κw < 0.20, fair if κw = 0.21-0.40, moderate if κw = 0.41-0.60, good if κw = 0.61-0.80, and very good if κw = 0.81-1.00 .
The patients' preferred and actual way of information seeking and the barriers to information are presented using simple descriptive statistics.
The researchers were not involved in the medical care of the patients. Ethical considerations were observed according to the recommendations of the Helsinki Declaration, as suggested by Wilkie . The study was approved by the Research Ethics Committee at the Faculty of Health Sciences, Linköping University (Dnr M 87-09).