Mariken Stegmann

during four OPT ‐ facilitated conversations with the GP over a 6 ‐ month period. Most participants rated either extending life (n = 10; 34%) or maintaining independence (n = 9; 31%) as their most important goal. Patients in the last year before death (late phase) less frequently prioritised extending life (n = 3; 21%) than those in an earlier phase (n = 7; 47%). Goals also changed during follow ‐ up in 16 patients, typically during the late phase (n = 12; 75%). In the qualitative analysis of text entries from patients records, we deduced three broad themes for a specific baseline OPT score: Prioritising a specific goal, rating a goal as unimportant, and making treatment choices related to goals. Goal changes during follow ‐ up were then shown to be related to symptoms, the disease course, or life events. By contrast, goal stability during follow ‐ up was related to being in a stable situation, having a motivation unrelated to the disease, and retaining stable goals despite symptoms. Chapter 6 details the first part of the patient information exchange in oncology study (PION1). In this study, we performed a qualitative content analysis of the medical files of 50 patients with colorectal, breast, or lung cancer who were treated with a curative intent. The files contained 419 documents that included referral letters from GPs and specialist letters. For data ‐ triangulation, we also performed interviews with nine health care providers. A total of 70 items related to correspondence were identified, with six main topics identified in most referral letters from primary to secondary care. It was particularly notable that highly relevant information regarding the past medical history was often mixed with less relevant information (e.g., heart failure and broken finger). To a lesser extent, the same held true for the presenting history and medication list. In the specialist letters, nine topics were identified in most letters. Although information about the actual treatment was always present, only limited detail was given about treatment intent (curative or palliative) or treatment alternatives. The interviews with nine health care providers confirmed these issues. Chapter 7 outlines the results of PION2, a Delphi consensus study that sought to construct a list of items that are essential for referral letters from GPs and specialist letters. We formed three panels that comprised 39 GPs, 42 oncology specialists (i.e., oncologists, radiotherapists, urologists, and surgeons), and 18 patients or patient representatives. After two rounds, the overall content validity for both letters was 71%, indicating that a third round was not necessary. The final consensus list included 12 and 35 items for the referral and specialist letters, respectively. The key requirements of GP referral letters were that they should be limited to medical facts, a brief summary of symptoms and abnormal findings, and the reason for referral. There was a similar requirement for letters from specialists to include these medical facts, but with the addition of detailed information about the diagnosis, treatment options, chosen treatment, and whether treatment was curative or palliative. Reflection on the Findings Emanuel and Emanuel argued in 1992 that the deliberative model is the most appropriate approach to use when assessing the interaction between patient and health care provider. 1 This model advocates that health care providers “engage the patient in dialog on what course of action would be best,” 1 a process that is currently termed SDM. Although this approach has numerous beneficial effects, such as reducing regret about decisionsl, 2 SDM is not often used in practice. 3–5 In the following sections, I will discuss several key aspects of 8 107 Summary and General discussion