Straatmijer, T.; Akker-van Marle, M.E. van den; Ponsioen, C.Y.; Horst, D. van der; Scherpenzeel, M.P.M.; Duijvestein, M.; Meulen-de Jong, A.E. van der 2023
IntroductionSince the number of medical treatment options for Ulcerative Colitis (UC) has expanded over the last decades, patients and physicians face challenges regarding decisions about the... Show moreIntroductionSince the number of medical treatment options for Ulcerative Colitis (UC) has expanded over the last decades, patients and physicians face challenges regarding decisions about the medication options. We aimed to identify patients' preferences about their UC treatment options in the Netherlands. Furthermore, we assessed after how many failed treatment options, patients are willing to consider surgical treatment.MethodsWe conducted a web-based, multicenter, discrete choice experiment (DCE) among adult UC patients. Patients were repeatedly asked to choose between two hypothetical medicinal treatment options. The choice tasks were based on administration route, administration location, chance of symptom reduction (on short and long term) and chances on infection and other adverse events. Data were analyzed by using Hierarchical Bayes estimation.ResultsA total of 172 UC patients participated in the DCE. More than half were anti-TNF experienced (52.9%). The chance of symptom reduction after one year (relative importance (RI) 27.7 (95% CI 26.0-29.4)) was most important in choosing between medicinal treatments, followed by the chance of infection (RI 22.3 (21.4 - 23.3)) and chance of symptom reduction after eight weeks (RI 19.5 (18.3 - 20.6)). Considering surgical treatment, nineteen patients (14.3%) would not even consider surgery after failing eight treatment options without any new available therapies left. Nine patients would consider surgery before trying any treatment options.ConclusionWe found that symptom reduction after one year was the most important attribute in choosing between treatments in UC patients. These outcomes can help understand the trade-offs and preferences of UC patients. Show less
By implementation of MRI-based staging, selective preoperative radiotherapy and surgical resection according to the TME-principle, the outcomes for patients with locally advanced rectal cancer have... Show moreBy implementation of MRI-based staging, selective preoperative radiotherapy and surgical resection according to the TME-principle, the outcomes for patients with locally advanced rectal cancer have improved considerably over the last decades. This has led to an increased focus on quality of life, functional outcomes and shared decision making. In this thesis, novel treatment options for patients with locally advanced rectal cancer are evaluated, including watch and wait for patients with a complete response after chemoradiotherapy as well as a total neoadjudant therapy (TNT) approach. Also quality of life and the importance patients assign to several outcome measures after ungoqing treatment for rectal cancer themselves are described. Show less
Introduction: Several factors are included in decision making for treatment of patients with locally advanced rectal cancer, including a trade-off between risks and gains of both clinical and... Show moreIntroduction: Several factors are included in decision making for treatment of patients with locally advanced rectal cancer, including a trade-off between risks and gains of both clinical and functional outcomes. However, it is largely unknown which outcomes are most important to patients and whether this differs between patients and clinicians.Methods: Both clinicians and patients treated for locally advanced rectal cancer were invited to fill out an online questionnaire, including a choice-based conjoint experiment. Participants were presented 14 comparisons of two hypothetical case presentations, characterized by different treatments and outcomes of care (6 attributes) and were asked to select the case with the best outcome at that moment. Hierarchical Bayes Estimation was used to calculate the relative importance (RI) of each of the six attributes.Results: In total, 94 patients and 128 clinicians completed the questionnaire. For patients, avoiding surgery with permanent stoma was most important (RI 24.4, 95%CI 21.88-26.87) and a 2-year difference in disease-free survival was least important (RI 5.6, 95%CI 4.9-6.2). Clinicians assigned highest importance to avoiding severe and daily worries about cancer recurrence (RI 30.7, 95%CI 29.1-32.4), while this was ranked 4th by patients (RI 17.9, 95%CI 16.5-19.4, p < 0.001).Conclusion: When confronted with different outcomes within one case description, patients find the duration of disease free survival the least important. In addition, considerable differences were found between the importance assigned by patients and clinicians to clinical and functional outcomes, most notably in avoiding surgery with permanent stoma and worries about recurrence. (C) 2020 Elsevier Ltd, BASO similar to The Association for Cancer Surgery, and the European Society of Surgical Oncology. All rights reserved. Show less
Deen, W.K. van; Obremskey, A.; Moore, G.; Akker-van Marle, M.E. van den; Doctor, J.N.; Hwang, C. 2020
Purpose Inflammatory bowel disease (IBD) patients experience diverse symptoms and the impact of these different symptoms varies substantially. Current disease activity measures do not account for... Show morePurpose Inflammatory bowel disease (IBD) patients experience diverse symptoms and the impact of these different symptoms varies substantially. Current disease activity measures do not account for the relative importance of the different symptoms and severity levels. In this study, we aimed to quantify the relative importance of different symptoms for IBD patients and to develop a patient preference-weighted symptom (PWS) score to assess symptom burden in IBD. Methods We performed a choice-based conjoint analysis (CBCA) survey with 129 IBD patients to estimate the relative importance of four common IBD symptoms: stool frequency, abdominal pain, blood in stools, and urgency. We then developed the PWS score using the preferences obtained from the CBCA, which we validated against existing measures. Results CBCA revealed that urgency was the most important symptom to patients, followed by abdominal pain and blood in stools. Urgency associated with incontinence received particularly high scores and was perceived to be more than 3 times as important as urgency without incontinence. Our results confirmed that different symptoms are not equally bothersome, and we showed that the relation between symptom-level and importance is not linear. The PWS score, which we developed using these estimates was highly correlated with existing disease activity measures. Conclusions We quantified the relative importance of four common IBD symptoms and developed the PWS score for IBD, which takes the relative importance of different symptoms and symptom-levels into account. The PWS score can be used to obtain a patient-centered assessment of symptom burden. Show less
In this thesis, we aimed to gain insight in the process of shared decision making in the setting of adjuvant cancer treatments. We observed clinician-patient consultations in daily clinical... Show moreIn this thesis, we aimed to gain insight in the process of shared decision making in the setting of adjuvant cancer treatments. We observed clinician-patient consultations in daily clinical practice, and developed a core list of information that should be provided in the pre-treatment consultation. We showed that the three key steps of shared decision making are followed to a limited extent. Choice awareness is rarely created in pre-treatment consultations on (neo-)adjuvant cancer treatment, and the option of foregoing these treatments is omitted consistently (Step 1). There is large variation in information provision on possible treatment strategies. Patients tend to overestimate the beneficial effect of treatment, and to underestimate the probability of harms (Step 2). Finally, patients' values and treatment preferences are elicited in only a minority of consultations. If patients voice their values or treatment preferences, or if the oncologist indicates to consider these, patients perceive a significant more active role in the decision making process (Step 3). Our results show that opportunities are missed to engage patients in a process of shared decision making. Small changes in doctor-patient communication can facilitate patients' involvement in deciding about treatment. Show less
Stiggelbout, A.M.; Pieterse, A.H.; Haes, J.C.J.M. de 2015
