Sexual health is an important aspect of quality-of-life for adolescent and young adult (AYA) patients with cancer. AYAs report a need for information about sexual health but experience a lack of... Show moreSexual health is an important aspect of quality-of-life for adolescent and young adult (AYA) patients with cancer. AYAs report a need for information about sexual health but experience a lack of communication with their healthcare provider. It is known that sexual health is a difficult theme for healthcare providers to discuss. This study aims to gain insight into perspectives of healthcare providers in facilitating AYAs' needs regarding sexual health. A qualitative study was performed. Six doctors and eight nurses from eight Dutch hospitals, specialized in AYA care, participated in semi-structured interviews. All interviews were audio-recorded, transcribed, and analyzed using a thematic analysis approach. Interviews with the healthcare providers revealed five themes concerning the discussion of sexual health: (1) being responsible for bringing up the topic of sexual health, (2) finding optimal timing to discuss sexual health, (3) acquiring knowledge to enable discussion of sexual health, (4) facilitating communication about sexual health, and (5) providing informative material for AYAs. To facilitate discussing sexual health, clear defined responsibilities within the team and sufficient knowledge are important. Self-report questionnaires, material to hand out, a checklist for healthcare providers, and knowledge of different communication strategies are helpful when discussing sexual health. By applying such means, communication with AYAs might be improved. Show less
Objectives: Tailoring medical information to cancer patients' needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the... Show moreObjectives: Tailoring medical information to cancer patients' needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here.Methods: A video-vignette experiment was used to systematically vary video patients' information preferences (limited/extensive) and amount of provided information (additional/no additional). N= 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures.Results: Tailoring information to video patients' preferences had no effect on APs' evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs' own information preferences: Those preferring extensive information recalled (M Delta = 5.8%) and recognized (M Delta = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information.Conclusions: Tailoring to the amount of video patient's information preferences did not affect APs' evaluation of the consultation (satisfaction, trust), while APs' personal information preferences determined their recall and recognition of medical information.Practice implications: Information preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented. (C) 2019 Elsevier B.V. All rights reserved. Show less
Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about... Show morePre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors' communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors' uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors' background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don't know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p < 0.02), and clinical geneticists scored lower on SDM compared with other types of counselors (p < 0.03). Our findings that counselors mainly communicate scientific uncertainties and use space-reducing responses imply that the way counselors address counselees' personal uncertainties and concerns during initial cancer genetic counseling is suboptimal. Show less
Kunneman, M.; Stiggelbout, A.M.; Marijnen, C.A.M.; Pieterse, A.H. 2015
