Health care experiences and preferences of Dutch chronic pain patients: a call for coordination and continuity

Abstract

Background: In Europe, about one in five adults suffer from chronic pain, a third of whom suffer from severe chronic pain. Although lower than the European average, in The Netherlands, chronic pain prevalence is still estimated at 15% of the population. Nevertheless, relatively little is known about patient experiences in pain care, probably because pain is often considered a symptom of other diseases or health problems, rather than an independent health condition in itself. In order to systematically identify the most prominent problems patients are presented with in Dutch chronic pain care, their experiences and preferences were assessed. Methods: An extensive patient experience survey was developed, regarding chronic pain care. The major sources for this survey were focus group meetings for patients (members of five Dutch chronic pain patient organisations) and an assessment of the relevant literature. The survey was sent to 2,209 members of five Dutch patient organisations for chronic pain. Results: 886 (RR 40%) patients completed the survey. About 90% reported fairly positive experiences regarding their communication with healthcare providers. However, 24% reported limited to no shared-decision making on treatments and 35% received little or no information about possible treatments. Half of the patients (52%) reported having a central health care provider coordinating their chronic pain care. With regard to continuity of care and cooperation between health care providers, these patients had significantly more positive results than patients who did not have such a provider (on average 68% vs. 44%, p < 0.01). Conclusions: Provider communication and continuity of care proved the major themes in both the focus group meetings and the survey. Communication was rated positively by patients, but coordination and continuity were often found insufficient. Our findings suggest that patients suffering from chronic pain may benefit from having a central health care provider, especially in the fragmented field of chronic pain care. Key messages: Health care provider communication and continuity of care proved to be major themes in healthcare for (Dutch) patients suffering from chronic pain. A central professional can help to monitor and coordinate the process of chronic pain care, leading to more efficient use of health care for both patients and the health care system.