Importance of patient reported and clinical outcomes for patients with locally advanced rectal cancer and their treating physicians. Do clinicians know what patients want?

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...

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Published in:European journal of surgical oncology Vol. 46; no. 9; pp. 1634 - 1641
Main Authors: van der Valk, Maxime J.M., van der Sande, Marit E., Toebes, Renee E., Breukink, Stephanie O., Bröker, Mirelle E.E., Doornebosch, Pascal G., Maliko, Nansi, Neijenhuis, Peter A., Marinelli, Andreas W.K.S., Peters, Femke P., Peeters, Koen C.M.J., Beets, Geerard L., Marang-van de Mheen, Perla J., Hilling, Denise E.
Format: Journal Article
Language:English
Published: England Elsevier Ltd 01.09.2020
Subjects:
Adult
Aged
Attitude to Health
Chemoradiotherapy
Choice Behavior
Choice-based experiment
Colostomy
Disease-Free Survival
Fecal Incontinence
Female
Gastroenterologists
Humans
Male
Middle Aged
Oncologists
Patient Preference
Patient preferences
Patient Reported Outcome Measures
Patient-reported outcomes
Physicians
Postoperative Complications
Proctectomy
Quality of Life
Rectal cancer
Rectal Neoplasms - therapy
Sexual Dysfunction, Physiological
Surgeons
Surveys and Questionnaires
Urinary Incontinence
Watchful Waiting
Patient preferences
Patient-reported outcomes
Rectal cancer
Choice-based experiment
ISSN:0748-7983, 1532-2157, 1532-2157
Online Access:Get full text
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Summary: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. 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. 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). 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.
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ISSN:0748-7983
1532-2157
1532-2157
DOI:10.1016/j.ejso.2020.04.014