Danique Heuvelings

332 Chapter 14 European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ) -C30 (Core) and -CR29 (CRC specific), the Short-Form 36 questionnaire (SF-36) encompassing both a physical component (PCS) and a mental component score (MCS), and the Fecal Incontinence QoL (FIQL) questionnaire. QoL was evaluated at different timepoints ranging from one month to 14 years post-surgery, and outcomes were not always compared to baseline assessments. In summary, synthesized evidence of the current work indicated that AL following oncologic colorectal resection is linked to diminished QoL, particularly during the initial six months and even one year following surgery, with variable degree of subsequent improvement. It emphasizes the need for additional scrutiny and dialogue with patients regarding the impact of AL and important outcomes. Subsequently, chapter 10 provided insights into the most important experiences, outcomes, and QoL features experienced by patients who developed an AL after colorectal surgery. Patients who encountered AL following colorectal surgery underwent interviews using a semi structured interview guide. All interviews were digitally recorded, transcribed verbatim, and coded. Data analysis employed a thematic approach to identify key themes that held significance for the interviewed patients. Ten patients (60% male, median age of 53 [39 – 65]) from three different continents participated in the interviews. Four main themes were identified in the interviews: (1) physical impact, (2) emotional impact, (3) coping mechanisms, and (4) important elements of anastomotic leak care. We noticed that pain due to treatments was an important factor that influenced patients’ experiences, but also rehabilitation difficulties. Emotional topics included fear of treatments due to pain, but also mentally struggling with having a stoma. Many participants adopted an optimistic outlook as a coping strategy, forcing themselves to stay positive throughout the diagnosis and treatment process, and highlighted the importance of a supportive social system. Additionally, significant aspects according to the patients were underscored and recommendations for clinical care were formulated on preoperative information, communication, medical staff and peer support, presentation of information, aftercare, shared decision making and a potential case manager. The outcomes of this study were incorporated in the CoReAL framework, as described in Chapter 3. As presented in this part, not only QoL assessment (chapter 9) but also qualitative research (chapter 10) is necessary to understand patients’ experiences and perceptions, as they differ significantly in their approaches, goals, and methodologies. The overall synthesis of QoL evidence points towards a consistent finding in Chapter 9, namely that AL following oncological colorectal resections does impact patients’ QoL, particularly in the initial year post-surgery. The observed decline in QoL scores reported among AL patients in the first six, and even 12 months, may be due to several reasons like additional postoperative complications, higher rates of re-interventions, prolonged length of hospital stay, etc. 58-62. Yet, it is meaningful to ask the patients in a qualitative way what they thought was difficult during that period and what factors and outcomes contributed to the impaired QoL. By

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