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1.
Complement Ther Clin Pract ; 57: 101916, 2024 Oct 09.
Article in English | MEDLINE | ID: mdl-39405598

ABSTRACT

BACKGROUND: Complementary medicine such as yoga, massage and art therapy has become increasingly popular among patients with cancer. However, the topic remains under-discussed during oncology consultations: patients seem hesitant to disclose complementary medicine use, and healthcare providers lack resources to discuss complementary medicine. This study aims to gain an understanding of how to improve communication and information provision in oncological settings about complementary medicine by assessing the experiences and needs of patients and healthcare providers. MATERIALS AND METHODS: Semi-structured interviews were conducted with 17 patients with cancer and 13 oncology healthcare providers recruited from two general hospitals and one breast cancer center in the Netherlands. Nine (former) patients with breast cancer collaborated with the research team as 'co-researchers'. Reflexive thematic analysis was used. RESULTS: The main themes identified were barriers to patient-provider communication about complementary medicine (e.g. lack of time and knowledge among healthcare providers, negative attitudes toward complementary medicine), facilitators of communication (e.g. openness of healthcare providers, complementary medicine as a routine topic) and information provision needs (e.g. easy access to information, the hospital being involved in providing information). CONCLUSION: Patients with cancer and healthcare providers report issues with the current approach to discussing complementary medicine and are of the opinion that complementary medicine should be a routine topic in oncology consultations. Future studies should focus on effective methods for standardizing complementary medicine discussions into oncology care and making reliable information available for patients and healthcare providers.

2.
BMC Complement Med Ther ; 24(1): 285, 2024 Jul 26.
Article in English | MEDLINE | ID: mdl-39061012

ABSTRACT

BACKGROUND: Half of all patients with cancer use complementary medicine. Given the benefits and risks associated with complementary medicine use, contact between complementary medicine practitioners and conventional healthcare providers (oncologists, nurses) is important for monitoring the health and well-being of mutual patients with cancer. Research on occurrence of such interprofessional contact is scarce. This study aims to describe complementary medicine practitioners' experiences with contact with conventional healthcare providers about mutual patients with cancer and the importance they attach to patient disclosure of complementary medicine use to their conventional healthcare provider. Predictors for interprofessional contact are explored. METHODS: An online survey was administered among complementary medicine practitioners who treat patients with cancer or cancer survivors and who are member of a professional association in the Netherlands. RESULTS: The survey was completed by 1481 complementary medicine practitioners. 40% of the participants reported to have contact with conventional healthcare providers of patients with cancer. Only 13% of the complementary medicine practitioners experienced conventional healthcare providers as open to communication with them. An explorative logistic regression showed that openness of conventional healthcare providers as experienced by complementary medicine practitioners was the most important predictor for the occurrence of interprofessional contact (OR = 8.12, 95% CI 5.12-12.86, p < .001). Most complementary medicine practitioners (82%) considered it important that patients disclose complementary medicine use to their conventional healthcare provider and 49% of the participants always motivates their patients to do so. CONCLUSIONS: Interprofessional contact with conventional healthcare providers in oncology occurs but is not routine for most complementary medicine practitioners. More than one-third of the surveyed complementary medicine practitioners experienced conventional healthcare providers as not open to communication with them. The openness of conventional healthcare providers as experienced by complementary practitioners is an important predictor for interprofessional contact to take place. Most complementary practitioners acknowledge the importance of patient disclosure of complementary medicine use to their conventional healthcare provider. Open communication about the topic of complementary medicine use between complementary practitioners, conventional healthcare providers and patients prevents overlooking relevant medical information and facilitates optimal monitoring of health and safety of patients with cancer.


Subject(s)
Complementary Therapies , Health Personnel , Interprofessional Relations , Neoplasms , Humans , Female , Complementary Therapies/statistics & numerical data , Male , Middle Aged , Adult , Surveys and Questionnaires , Neoplasms/therapy , Health Personnel/psychology , Netherlands , Medical Oncology , Attitude of Health Personnel , Aged , Traditional Medicine Practitioners
3.
BMC Med Educ ; 24(1): 707, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38951784

ABSTRACT

BACKGROUND: The effects of many treatments in healthcare are determined by factors other than the treatment itself. Patients' expectations and the relationship with their healthcare provider can significantly affect treatment outcomes and thereby play a major role in eliciting placebo and nocebo effects. We aim to develop and evaluate an innovative communication training, consisting of an e-learning and virtual reality (VR) training, for healthcare providers across all disciplines, to optimize placebo and minimize nocebo effects through healthcare provider-patient communication. The current paper describes the development, mid-term evaluation, optimization, and final evaluation of the communication training, conducted in The Netherlands. METHODS: The development of both the e-learning and the VR training consisted of four phases: 1) content and technical development, 2) mid-term evaluation by healthcare providers and placebo/communication researchers, 3) optimization of the training, and 4) final evaluation by healthcare providers. To ensure the success, applicability, authenticity, and user-friendliness of the communication training, there was ongoing structural collaboration with healthcare providers as future end users, experts in the field of placebo/communication research, and educational experts in all phases. RESULTS: Placebo/communication researchers and healthcare providers evaluated the e-learning positively (overall 7.9 on 0-10 scale) and the content was perceived as useful, accessible, and interesting. The VR training was assessed with an overall 6.9 (0-10 scale) and was evaluated as user-friendly and a safe method for practicing communication skills. Although there were some concerns regarding the authenticity of the VR training (i.e. to what extent the virtual patient reacts like a real patient), placebo and communication researchers, as well as healthcare providers, recognized the significant potential of the VR training for the future. CONCLUSIONS: We have developed an innovative and user-friendly communication training, consisting of an e-learning and VR training (2D and 3D), that can be used to teach healthcare providers how to optimize placebo effects and minimize nocebo effects through healthcare provider-patient communication. Future studies can work on improved authenticity, translate the training into other languages and cultures, expand with additional VR cases, and measure the expected effects on providers communication skills and subsequently patient outcomes.


Subject(s)
Communication , Nocebo Effect , Placebo Effect , Virtual Reality , Humans , Netherlands , Health Personnel/education , Physician-Patient Relations , Computer-Assisted Instruction/methods , Female
4.
Ann Hematol ; 103(6): 2113-2121, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38578507

ABSTRACT

Acquired aplastic anemia (AA) is a rare form of immune-mediated bone marrow failure, which can result in life-threatening infections or bleeding if left untreated. Treatment consists of either immune suppressive therapy (IST) or allogeneic stem cell transplantation (alloHSCT). While considerable research has been published regarding survival, response rate and toxicity of both treatments, knowledge on the impact on quality of life (QoL) is scarce. We used the recently developed AA-specific QoL questionnaire (QLQ-AA/PNH-54) to evaluate QoL in a single center cohort of AA patients who were successfully treated with IST. The 54 questions represent 12 different QoL domains. Results were analyzed for all patients and grouped based on hematologic response (complete response (CR) or partial response (PR)). Thirty-six successfully treated adult patients (15 in CR, 21 in PR) completed the questionnaire (median age 54 years, range 21-71; median time since last IST 5 years, range 0-41). Fatigue was experienced by 83% of patients. Even though total QoL scores did not significantly differ between patients with PR and CR (105 vs 92, p-value 0,17) there appeared to be a trend towards higher scores in patients with PR, especially in domains concerning psychological wellbeing. This trend was most clear in the domains fear of progression (2,12 in PR patients vs 1,73 in CR patients; p-value 0,08) and role functioning (2,22 vs 1,88; p-value 0,07). In conclusion, patients with AA continue to experience psychological and physical effects despite successful IST.


Subject(s)
Anemia, Aplastic , Quality of Life , Humans , Anemia, Aplastic/therapy , Adult , Male , Middle Aged , Female , Aged , Surveys and Questionnaires , Young Adult , Immunosuppressive Agents/therapeutic use , Hematopoietic Stem Cell Transplantation
5.
Palliat Support Care ; : 1-13, 2024 Mar 27.
Article in English | MEDLINE | ID: mdl-38533613

ABSTRACT

OBJECTIVES: We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer. METHODS: For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested. RESULTS: Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance. SIGNIFICANCE OF RESULTS: In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists' worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

6.
J Pain Symptom Manage ; 67(6): 478-489.e13, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38428696

ABSTRACT

CONTEXT: Evidence-based guidance for oncologists on how to communicate prognosis is scarce. OBJECTIVES: To investigate the effects of prognostic communication strategies (prognostic disclosure vs. communication of unpredictability vs. non-disclosure; standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on prognostic perceptions, treatment decision-making and end-of-life anticipation in advanced cancer. METHODS: This experimental study used eight videos of a scripted oncological consultation, varying only in prognostic communication strategies. Cancer-naive individuals, who imagined being the depicted patient, completed surveys before and after watching one video (n = 1036). RESULTS: Individuals generally perceived dying within 1 year as more likely after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001), and after numerical versus word-based estimates (P < 0.001). Individuals felt better informed about prognosis to decide about treatment after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001); after communication of unpredictability versus non-disclosure (P < 0.001); and after numerical versus word-based estimates (P = 0.017). Chemotherapy was more often favored after prognostic disclosure versus non-disclosure (P = 0.010), but less often after numerical versus word-based estimates (P < 0.001). Individuals felt more certain about the treatment decision after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001). Effects of different survival scenarios were absent. No effects on end-of-life anticipation were observed. Evidence for moderating individual characteristics was limited. CONCLUSION: If and how oncologists discuss prognosis can influence how individuals perceive prognosis, which treatment they prefer, and how they feel about treatment decisions. Communicating numerical estimates may stimulate prognostic understanding and informed treatment decision-making.


Subject(s)
Communication , Neoplasms , Physician-Patient Relations , Terminal Care , Humans , Male , Prognosis , Female , Neoplasms/therapy , Middle Aged , Adult , Aged , Decision Making , Young Adult
7.
Support Care Cancer ; 32(4): 214, 2024 Mar 06.
Article in English | MEDLINE | ID: mdl-38446248

ABSTRACT

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.


Subject(s)
Bereavement , Neoplasms , Humans , Prospective Studies , Grief , Communication
8.
Skin Health Dis ; 3(6): e300, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38047257

ABSTRACT

Erythrodermic mycosis fungoides and Sézary syndrome are chronic, relapsing-remitting diseases that greatly impacts patients' quality of life (QoL). Mogamulizumab-kpkc (Mogamulizumab) is a novel therapeutic agent for cutaneous T-cell lymphomas with a notable impact on progression-free survival. Qualitative assessment methods allow a broader exploration and greater insight in individual patient experience than quantitative studies. However, there is limited data on the impact of mogamulizumab on health-related QoL. To investigate the impact of erythrodermic cutaneous T-cell lymphoma (E-CTCL) on QoL and the effect of mogamulizumab on the QoL. Semi-structured interview were conducted with seven patients with E-CTCL that were receiving mogamulizumab treatment. Five major themes arose: Diagnosis and the diagnostic delay and uncertainty experienced by participants; Physical functioning due to the high symptom burden; Psychological and social functioning considering the significant impact on daily life; Treatment and the effect of mogamulizumab; and Support by family, friends and health professionals. Mogamulizumab therapy resulted in a significant decrease of symptoms. The small sample size should also be taken into account although data saturation was reached. This study gives a broad insight into the large impact of E-CTCL and the major consequences on the physical functioning as well as on the emotional/psychological and social well-being. Mogamulizumab appears to have a positive effect on symptoms.

9.
Psychooncology ; 32(12): 1827-1838, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37957777

ABSTRACT

OBJECTIVE: Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers). METHODS: We searched for all types of peer-reviewed studies that determined adult (≥18 years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used. RESULTS: A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity). CONCLUSIONS: Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.


Subject(s)
Caregivers , Neoplasms , Adult , Humans , Caregivers/psychology , Artificial Intelligence , Patients , Communication , Emotions , Neoplasms/therapy , Neoplasms/psychology
10.
Patient Educ Couns ; 114: 107790, 2023 09.
Article in English | MEDLINE | ID: mdl-37207565

ABSTRACT

BACKGROUND/OBJECTIVE: A growing population of those affected by serious illness, prognostic uncertainty, patient diversity, and healthcare digitalization pose challenges for the future of serious illness communication. Yet, there is paucity of evidence to support serious illness communication behaviors among clinicians. Herein, we propose three methodological innovations to advance the basic science of serious illness communication. RESULTS: First, advanced computation techniques - e.g. machine-learning techniques and natural language processing - offer the possibility to measure the characteristics and complex patterns of audible serious illness communication in large datasets. Second, immersive technologies - e.g., virtual- and augmented reality - allow for experimentally manipulating and testing the effects of specific communication strategies, and interactional and environmental aspects of serious illness communication. Third, digital-health technologies - e.g., shared notes and videoconferences - can be used to unobtrusively observe and manipulate communication, and compare in-person to digitally-mediated communication elements and effects. Immersive and digital health technologies allow integration of physiological measurement (e.g. synchrony or gaze) that may advance our understanding of patient experience. CONCLUSION/PRACTICE IMPLICATIONS: New technologies and measurement approaches, while imperfect, will help advance our understanding of the epidemiology and quality of serious illness communication in an evolving healthcare environment.


Subject(s)
Communication , Delivery of Health Care , Humans
11.
J Palliat Med ; 26(8): 1109-1114, 2023 08.
Article in English | MEDLINE | ID: mdl-37162756

ABSTRACT

Background: In advanced cancer, clinician-expressed empathy can improve patients' psychological outcomes. It remains unknown whether all patients benefit equally from empathy. Objective: To explore whether the effect of clinician-expressed empathy on patients' psychological outcomes is moderated by patient ethnicity. Methods: Using an experimental video-vignette design, 160 participants watched a consultation-video with/without added empathy. Using regression analysis, the moderating effect of ethnicity (non-Western- vs. Dutch/Western-immigration background) on the relationship between empathy and psychological outcomes was assessed. Results: The main effect of empathy on satisfaction (p = 0.001), trust (p = 0.002), and self-efficacy (p < 0.001) was moderated by ethnicity (satisfaction, p = 0.050; trust, p = 0.066; self-efficacy, p = 0.075). No main effect of empathy nor moderation by ethnicity was found for anxiety (state anxiety: p = 0.284, p = 0.319; current anxiety: p = 0.357, p = 0.949). No main effects of ethnicity (satisfaction, p = 0.942; trust, p = 0.724; self-efficacy, p = 0.244; state anxiety, p = 0.812; current anxiety p = 0.523) were found. Conclusion: In advanced cancer, non-Western patients might benefit most from empathy. Dutch Trial Registration Number: NTR NL8992.


Subject(s)
Neoplasms , Physician-Patient Relations , Humans , Ethnicity , Empathy , Communication
12.
Article in English | MEDLINE | ID: mdl-36972984

ABSTRACT

OBJECTIVE: We explored, in advanced breast cancer, whether: (1) patients recall less information following bad versus good news consultations; (2) empathy has a greater effect on recalled information following bad versus good news consultations. METHODS: Observational study using audio-recorded consultations. Participants' recall of provided information about treatment options, aims/positive effects and side-effects was assessed. Clinician-expressed empathy and consultation type were determined. Regression analyses assessed associations between consultation type and recall, exploring moderating influences of clinician-expressed empathy. RESULTS: For 41 consultations (18 bad news, 23 good news), recall data were completed; total recall (47% vs 73%, p=0.03) and recall about treatment options (67% vs 85%, p=0.08, trend) were significantly worse following bad news compared with good news consultations. Recall about treatment aims/positive effects (53% vs 70%, p=0.30) and side-effects (28% vs 49%, p=0.20) was not significantly worse following bad news. Empathy moderated the relationship between consultation type and total recall (p<0.01), recall about treatment options (p=0.03) and about aims/positive effects (p<0.01) but not about side-effects (p=0.10). Only following good news consultations empathy influenced recall favourably. CONCLUSIONS: This explorative study suggests that in advanced cancer, information recall is especially impaired following bad news consultations, for which empathy does not improve remembered information.

13.
Patient Educ Couns ; 112: 107715, 2023 07.
Article in English | MEDLINE | ID: mdl-36996589

ABSTRACT

OBJECTIVE: To develop valid and realistic manipulations for video-vignette research using expert opinion rounds, in preparation of an experimental study on clinicians' (un)reasonable argumentative support for treatment decisions in neonatal care. METHODS: In three rounds, N = 37 participants (parents/clinicians/researchers) provided feedback on four video-vignette scripts and completed listing, ranking, and rating exercises to determine which (un)reasonable arguments clinicians may provide to support treatment decisions. RESULTS: Round 1: participants deemed the scripts realistic. They judged that, on average, clinicians should provide two arguments for a treatment decision. They listed 13-20 reasonable arguments, depending on the script. Round 2: participants ranked the two most salient, reasonable arguments per script. Round 3: participants rated the most plausible, unreasonable arguments from a predefined list. These results guided the design of 12 experimental conditions. CONCLUSION: Expert opinion rounds are an effective method to develop video-vignettes that are theoretically sound and ecologically realistic and offer a powerful means to include stakeholders in experimental research design. Our study yielded some preliminary insights into what are considered prevalent (un)reasonable arguments for clinicians' treatment plans. PRACTICE IMPLICATIONS: We provide hands-on guidelines on involving stakeholders in the design of video-vignette experiments and the development of video-based health communication interventions - both for research and practice.


Subject(s)
Health Communication , Teaching Rounds , Infant, Newborn , Humans , Expert Testimony , Parents
14.
Patient Educ Couns ; 105(11): 3235-3241, 2022 11.
Article in English | MEDLINE | ID: mdl-35989202

ABSTRACT

OBJECTIVE: This study aims to examine the structure of communication about complementary medicine (CM) between patients with cancer and clinicians during oncology consultations. METHODS: Previously, consultations between 29 clinicians and 80 patients with advanced cancer were recorded in six hospitals in the Netherlands. The present study considers a secondary analysis. References to CM during the consultation were coded using a self-developed observational coding scheme. RESULTS: At least one reference to CM was observed in 35 out of 80 consultations (44 %), with a total of 73 references. In most cases, CM was initially referred to by patients. Clinicians often did not elaborate on the subject of CM. Relevant aspects related to CM (e.g., safety, effectiveness) were infrequently discussed. Both patients and clinicians showed predominantly neutral to positive attitudes towards CM. CONCLUSIONS: This study shows that patients are still the main initiators of discussions about CM and the topic is not consistently discussed in daily oncology practice. PRACTICE IMPLICATIONS: If exploration of patients' interest in CM or its use became routine in oncology practice, it may relieve patients of the burden of introducing the topic, decrease potential risks of CM use and increase access to evidence-based CM for all patients with cancer.


Subject(s)
Complementary Therapies , Neoplasms , Communication , Humans , Medical Oncology , Neoplasms/therapy , Physician-Patient Relations , Referral and Consultation
15.
Patient Educ Couns ; 105(7): 1963-1969, 2022 07.
Article in English | MEDLINE | ID: mdl-35410737

ABSTRACT

High-quality communication can mitigate suffering during serious illness. Innovations in theory and technology present the opportunity to advance serious illness communication research, moving beyond inquiry that links broad communication constructs to health outcomes toward operationalizing and understanding the impact of discrete communication functions on human experience. Given the high stakes of communication during serious illness, we see a critical need to develop a basic science approach to serious illness communication research. Such an approach seeks to link "what actually happens during a conversation" - the lexical and non-lexical communication content elements, as well as contextual factors - with the emotional and cognitive experiences of patients, caregivers, and clinicians. This paper defines and justifies a basic science approach to serious illness communication research and outlines investigative and methodological opportunities in this area. A systematic understanding of the building blocks of serious illness communication can help identify evidence-informed communication strategies that promote positive patient outcomes, shape more targeted communication skills training for clinicians, and lead to more tailored and meaningful serious illness care.


Subject(s)
Caregivers , Communication , Critical Illness , Humans
16.
BMJ Support Palliat Care ; 12(3): 262-269, 2022 Sep.
Article in English | MEDLINE | ID: mdl-33020150

ABSTRACT

OBJECTIVE: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings. DESIGN: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies. RESULTS: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients. CONCLUSIONS: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions.


Subject(s)
Communication , Neoplasms , Aged , Decision Making , Feasibility Studies , Hospitals , Humans
17.
Cancer ; 128(5): 1133-1140, 2022 03 01.
Article in English | MEDLINE | ID: mdl-34762305

ABSTRACT

BACKGROUND: Many complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients with advanced cancer about potentially harmful communication behaviors by oncologists and helpful alternatives. METHODS: An online survey design was used that was based on literature scoping and patient/clinician/researcher input. Patients with advanced cancer (n = 74) reflected on the potential harmfulness of 19 communication situations. They were asked whether they perceived the situation as one in which communication could be harmful (yes/no). If they answered "yes," they were asked whether they perceived the examples as harmful (yes/no) or helpful (yes/no) and to provide open comments. Results were analyzed quantitatively and qualitatively (content analysis). RESULTS: Communication regarding information provision, prognosis discussion, decision-making, and empathy could be unnecessarily potentially harmful, and this occurred in various ways, such as making vague promises instead of concrete ones (92%), being too directive in decision-making (qualitative), and not listening to the patient (88%). Not all patients considered other situations potentially harmful (eg, introducing the option of refraining from anticancer therapy [49%] and giving too much [prognostic] information [60%]). Exploring each individual patients' needs/preferences seemed to be a precondition for helpful communication. CONCLUSIONS: This article provides patient perspectives on oncologists' unnecessarily potentially harmful communication behaviors and offers practical tools to improve communication in advanced cancer care. Both preventable pitfalls and delicate challenges requiring an individualized approach, where exploration might help, are described. Although providing difficult and unwelcome news is a core task for clinicians, this study might help them to do so while preventing potentially unnecessary harm.


Subject(s)
Neoplasms , Oncologists , Communication , Empathy , Humans , Neoplasms/therapy , Physician-Patient Relations , Surveys and Questionnaires
18.
Patient Educ Couns ; 105(6): 1634-1641, 2022 06.
Article in English | MEDLINE | ID: mdl-34686382

ABSTRACT

OBJECTIVE: Experimental vignette designs are used to systematically test the effects of medical communication. We tested the impact of two methodological choices -gender congruence and vignette modality- on analogue patient reported outcomes. METHODS: In an online experiment using a vignette portraying an oncological bad news consultation, we manipulated (1) gender congruence between the analogue and the vignette patient, and (2) vignette modality, i.e., text, audio, or video. Cancer-naïve students acting as analogue patients (N = 209, 22 ± 3 years old, 75% F) were assigned one randomly-selected vignette variant and completed questionnaires. Using 3 × 2 (repeated-measures) ANOVAs, we tested main and interaction effects of gender congruence and modality on self-reported engagement, recall, trust, satisfaction and anxiety. RESULTS: We found no main effects of gender congruence or modality on any of the outcomes, nor any interaction effects between modality and congruence. CONCLUSION: Our results indicate that researchers may needlessly create gender-congruent vignettes at considerable cost and effort. Also, the currently assumed superiority of videos over other modalities for experimental vignette-based research may be inaccurate. PRACTICE IMPLICATIONS: Although further testing in an offline format and among different populations is warranted, decisions regarding gender congruence and modality for future vignette-based studies should be based primarily on their specific aims.


Subject(s)
Communication , Physician-Patient Relations , Adult , Humans , Referral and Consultation , Surveys and Questionnaires , Trust , Young Adult
19.
BMJ Open ; 11(10): e053005, 2021 10 20.
Article in English | MEDLINE | ID: mdl-34670766

ABSTRACT

INTRODUCTION: Approximately half of patients with cancer use some form of complementary medicine alongside conventional cancer treatment. The topic of complementary medicine often remains undiscussed in consultations between patients with cancer and their healthcare providers. This results in increased risks for adverse or interaction effects and decreased access to the benefits of evidence-based complementary medicine for patients with cancer. This paper describes the design of patient participatory study titled 'COMMON' that aims to explore and enhance open and effective communication about complementary medicine in oncology. The study is carried out in collaboration with 12 (former) patients with breast cancer as coresearchers. METHODS AND ANALYSIS: The study complies with the six steps of the intervention mapping framework. Three non-academic hospitals recruit participants (patients with cancer, oncology healthcare providers and managers) for interviews about the organisation, experiences and needs regarding complementary medicine. To assess communication about complementary medicine, recorded oncology consultations are analysed. For an overview of evidence-based complementary medicine available to patients with cancer, a review of reviews is conducted on the evidence on cancer patient-reported outcomes of complementary medicine frequently used by patients with cancer, supplemented with an online search and survey among organisations and persons providing complementary medicine to patients with cancer. Together, these steps generate input for the development of a toolbox that supports an open and effective discussion on complementary medicine in oncology. In a pilot study, acceptability and usability of the toolbox are assessed among patients with cancer and oncology healthcare providers. Dissemination of the toolbox is covered by the commitment of stakeholder parties. ETHICS AND DISSEMINATION: The Medical Ethics Committee Arnhem-Nijmegen declared the study was exempted from formal approval under the Dutch Medical Research Involving Human Subjects Act. The results will be disseminated through open-access, peer-reviewed publications, stakeholder-reporting and presentations at relevant conferences.


Subject(s)
Complementary Therapies , Health Personnel , Humans , Medical Oncology , Patient Participation , Pilot Projects , Review Literature as Topic
20.
BMC Palliat Care ; 20(1): 142, 2021 Sep 14.
Article in English | MEDLINE | ID: mdl-34521393

ABSTRACT

BACKGROUND: There is a need for more insight into how to address challenges of information-provision for women with advanced breast cancer. We aimed to explore oncologists' and patients' views on (i) the challenges of information-provision, and (ii) possible strategies to address these challenges, meanwhile (iii) exploring the possible facilitating role of positive expectations and empathy. METHODS: Semi-structured interviews were held with oncologists (n = 10) and women with advanced breast cancer (n = 14). Principles of Thematic Analysis were followed, with two researchers analyzing transcribed data, supported by Atlas.ti software. RESULTS: Taken together the data from oncologists and patients, we found that when communicating with patients with advanced cancer, oncologists face challenges, including handling patients' unrealistic disease (status) beliefs, and choosing approaches for discussing available treatment options and their side effects. Possible strategies to address these challenges include balancing information with acceptance of denial, and using medical expertise to guide treatment discussions. A sensitive issue is whether to discuss the option of no anti-cancer treatment. Meanwhile, approaches and preferences for discussions of side effects vary. Positive expectations and empathy can facilitate information-provision by creating space and helping patients to open up more. CONCLUSIONS: Integrating oncologists' and patients' views, oncologists can provide realistic information while also, temporarily, accepting denial, and can use their medical expertise to address challenges around unrealistic beliefs and discussion of treatment options. Finding ways to tailor discussions of no anti-cancer treatment and side-effect information are needed. Positive expectations and empathy might facilitate - tailored - information-provision, leading ultimately to patient-centered care lying at the heart of medicine.


Subject(s)
Breast Neoplasms , Neoplasms , Oncologists , Breast Neoplasms/therapy , Communication , Empathy , Female , Humans , Physician-Patient Relations , Qualitative Research
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