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
Dreesens, D.; Stiggelbout, A.; Agoritsas, T.; Elwyn, G.; Flottorp, S.; Grimshaw, J.; ... ; Weijden, T. van der 2019
Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance... Show moreObjective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types.Methods: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached.Results: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements.Conclusion: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders.Practice implications: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job. (C) 2019 Elsevier B.V. All rights reserved. Show less
Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about... Show moreObjective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first veersion was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded.Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration.Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity.Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training. (C) 2018 Elsevier B.V. All rights reserved. Show less
Objective: To assess the extent to which evaluations of shared decision making (SDM) assess the extent and quality of humanistic communication (i.e., respect, compassion, empathy).Methods: We... Show moreObjective: To assess the extent to which evaluations of shared decision making (SDM) assess the extent and quality of humanistic communication (i.e., respect, compassion, empathy).Methods: We systematically searched Web of Science and Scopus for prospective studies published between 2012 and February 2018 that evaluated SDM in actual clinical decisions using validated SDM measures. Two reviewers working independently and in duplicate extracted all statements from eligible studies and all items from SDM measurement instruments that referred to humanistic patient-clinician communication.Results: Of the 154 eligible studies, 14 (9%) included >= 1 statements regarding humanistic communication, either in framing the study (N = 2), measuring impact (e.g., empathy, respect, interpersonal skills; N = 9), as patients'/clinicians' accounts of SDM (N = 2), in interpreting study results (N = 3), and in discussing implications of study findings (N = 3). Of the 192 items within the 11 SDM measurement instruments deployed in the included studies, 7 (3.6%) items assessed humanistic communication.Conclusion: Assessments of the quality of SDM focus narrowly on SDM technique and rarely assess humanistic aspects of patient-clinician communication. Practice implications: Considering SDM as merely a technique may reduce SDM's patient-centeredness and undermine its' contribution to patient care. (c) 2018 Elsevier B.V. All rights reserved. Show less
Kunneman, M.; Marijnen, C.A.M.; Baas-Thijssen, M.C.M.; Linden, Y.M. van der; Rozema, T.; Muller, K.; ... ; Pieterse, A.H. 2015
