Survey of the German Cancer Information Service shows: Patients want a more active role in decisions but lack preparation for this
The German Cancer Information Service (KID) answers around 35,000 individual inquiries per year, 80% of these coming in via the toll-free telephone line. About half of the callers are cancer patients. They have a high preference for participation in decisions regarding treatment and care, as previous KID surveys have shown.
Even though patient participation and shared decision are strongly endorsed, many cancer patients are not satisfied with their level of participation. Also, preferences may vary according to issue in question, disease situation, age and education.
To elucidate these questions some more, we included a module on decision making and participation in our latest user satisfaction survey that ran from June 2016 through April 2017.
The decision making (DM) module was included exclusively in the patient version of the questionnaire. It looked at patients´ experiences with communication and decision making regarding medical care, preferred level of participation with different issues and perceived participation barriers. Using validated tools such as the Control Preference Scale, the DM module was designed to add to the existing evidence for decision making in oncology.
We ended up with a return of 3,359 evaluable questionnaires, among these 2,010 from patients (60%). 1,890 patients were evaluable for the DM module, 65% female and 35% male. Median age was 63 years, and half of the patients had higher education, which is considerably above average. Despite the high education level, over 40% of patients felt poorly informed at the time of contact with the CIS.
About half of the patients specifically sought decision support, mostly regarding treatment, benefits and risks, but also regarding CAM. Again, participation preference was very high with 80% absolutely wanting to take an active part in decisions.
The patients were asked to consider different issues where decisions may have had to be made and first state how they experienced their role and then reflect on their preferred level of participation with these issues.
Preference for an active role in decisions was considerably higher than what the patients had experienced personally. This was true for all “decision issues” looked at. Shared decision making was experienced by 15-20% but would be preferred by 34-45% (Fig. 1).
Major barriers impeding participation lie in physician communication style, not – or not explicitly – offering participation and not providing relevant information, together with patients´ perceived lack of information and competence. Thus, the high preference of the surveyed patients for participation and an active role stands in stark contrast to many patients´ feeling that they lacked necessary preparation and information.
Information that is perceived helpful can increase self-competence and thus foster participation. In the user satisfaction part of the survey, high ratings of the information provided by the CIS resulted in high ratings in items associated with gain in knowledge and self-competency (e.g. understanding, assessment, orientation). CIS information has the potential to empower patients to take a more active role.