Objective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision... Show moreObjective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients.Methods: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018.Results: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 +/- 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed.Conclusion: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making. Show less
Albers, L.F.; Belzen, M.A. van; Batenburg, C. van; Engelen, V.; Putter, H.; Ouden, M.E.M. den; ... ; Elzevier, H.W. 2020
Partners of patients with cancer report a negative impact on their sexuality and intimacy and experience a lack of information. Little is known about partners' information needs regarding sexuality... Show morePartners of patients with cancer report a negative impact on their sexuality and intimacy and experience a lack of information. Little is known about partners' information needs regarding sexuality and intimacy. The study was conducted with 230 partners of patients with cancer using a questionnaire. 56% stated that cancer had negatively affected their sexuality and intimacy. 60% percent reported a need for information. Except a self-reported negative impact of cancer, no characteristics were associated with a higher need for sexuality related information. Partners prefer information that includes practical advice and experiences from others. It is recommended to provide patients and their partner's information on sexuality and intimacy within routine treatment. Show less
Albers, L.F.; Belzen, M.A. van; Batenburg, C. van; Engelen, V.; Putter, H.; Pelger, R.C.M.; Elzevier, H.W. 2020
Introduction The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality... Show moreIntroduction The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality and cancer, patients' perspective is needed. The goals of this study were to investigate what kind of information Dutch cancer patients need, their ideas on how to improve communication, and to identify patients who are more in need of information regarding sexuality. Methods The Dutch Federation of Cancer Patient Organizations developed and conducted a nationwide 28-item online survey. The survey was distributed among cancer patients and survivors. Results In total, 2657 (ex) cancer patients participated, with a median age of 61 years, and half were male (45.2%). Of the respondents, 65% were in need of information about sexuality. Patients <= 61 years (p < 0.001), patients with a self-reported negative effect of cancer on sexuality (p < 0.001) and patients who were diagnosed less than 2 years ago (p < 0.04) reported a higher need for information. Regardless of type of cancer, patients were most in need of practical tips and practical information regarding sexuality. To enhance communication about sexuality, 64% of the respondents suggested that it would be of help if care providers give information as standard care. Conclusions (Ex) cancer patient prefer to receive standard information about sexuality by their care providers. According to patients' preferences, information must include practical tips. Age, self-reported negative effect on sexuality status and time from diagnoses influenced the need for information. Show less
