Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

Velden, Naomi C.A. van der; Laarhoven, H.W.M. van; Burgers, Sjaak A.; Hendriks, Lizza; Vos, Filip Yves Francine Léon De; Dingemans, Anne‐Marie C.; Jansen, Joost; Haarst, Jan-Maarten W. van; Dits, Joyce; Smets, Ellen M. A.

doi:10.1186/s12885-022-09911-8

Cited by 13 publications

(12 citation statements)

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“…about prognosis) and active participation in decision making. 87,88 Patients who prefer less information and a more paternalistic decision making approach do not feel capable enough to comprehend such important information and decisions. 87,89,90 Of course, this does not automatically mean that people who want much information also prefer to be actively involved in all decision-making, and vice-versa (although older literature does hint toward this 91,92 ).…”

Section: Discussionmentioning

confidence: 99%

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

Westendorp,

Geerse,

van der Lee

et al. 2023

Psycho-Oncology

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ObjectiveIssues 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).MethodsWe 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.ResultsA 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).ConclusionsOur 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.

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Section: Discussionmentioning

confidence: 99%

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

Westendorp,

Geerse,

van der Lee

et al. 2023

Psycho-Oncology

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“…Furthermore, information-seekers expressed a stronger need for both personalized and generic statistics than information-avoiders. This highlights the importance of exploring patients’ information coping style when deciding to disclose (personalized) numerical data with patients [ 21 ]. Indeed, patients typically report better quality of life and less anxiety if their information needs are congruent with what they received [ 49 ].…”

Section: Discussionmentioning

confidence: 99%

“…For instance, with regards to information coping style there was still a group of blunters (i.e., information-avoiders) in our sample. Moreover, patients who have survived cancer may have different perspectives on receiving risk information compared to those who are (newly) diagnosed with cancer and/or are undergoing treatment, for instance for receiving prognostic information [ 21 ]. For ethical reasons, we included cancer survivors in our sample since we did not want to interfere with the current information provision for (newly) diagnosed patients, especially with those who may not yet receive personalized numerical information.…”

Section: Discussionmentioning

confidence: 99%

“…Even though several survey studies repeatedly suggest that patients have a desire for receiving prognostic information in general [19][20][21], there has been no detailed investigation into patients' need for specifically receiving personalized numbers and statistics for a range of different outcomes. A recent qualitative study found suggestive evidence that majority of cancer patients want to receive personalized cancer statistics such as survival rates or treatment side effects risks [22], but a more systematic and quantitative analysis is lacking.…”

Section: Introductionmentioning

confidence: 99%

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Need for numbers: assessing cancer survivors’ needs for personalized and generic statistical information

Vromans

Hommes

Clouth

et al. 2022

BMC Med Inform Decis Mak

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Background Statistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors’ need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors’ considerations for (not) wanting statistical information. Methods Cancer survivors’ need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale (‘not at all’- ‘very much’). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson’s correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively. Results Overall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p < .001, d = 0.74). Need for personalized statistics was associated with higher subjective numeracy (r = .29) and an information-seeking coping style (r = .41). Three statistical need profiles were identified (1) a strong need for both generic and personalized statistics (34%), (2) a stronger need for personalized than for generic statistics (55%), and (3) a little need for both generic and personalized statistics (11%). Considerations for wanting personalized cancer statistics ranged from feelings of being in control to making better informed decisions about treatment. Considerations for not wanting statistics related to negative experience with statistics and to the unpredictability of future events for individual patients. Conclusions In light of the increased possibilities for using personalized statistics in clinical practice and decision aids, it appears that most cancer survivors want personalized statistical information during treatment decision-making. Subjective numeracy and information coping style seem important factors influencing this need. We encourage further development and implementation of data-driven personalized decision support technologies in oncological care to support patients in treatment decision making.

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“…Instead, it could be a protective function as it allows hope ( Hagerty et al, 2005 ). We encourage healthcare professionals to explore patients coping style and in specific prognostic information preferences and the underlying reasons in order to provide tailored communication ( van der Velden et al, 2022 ).…”

Section: Discussionmentioning

confidence: 99%

“Double awareness”—adolescents and young adults coping with an uncertain or poor cancer prognosis: A qualitative study

Burgers

Bent²,

Rietjens³

et al. 2022

Front. Psychol.

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IntroductionAdolescents and young adults with an uncertain or poor cancer prognosis (UPCP) are confronted with ongoing and unique age-specific challenges, which forms an enormous burden. To date, little is known about the way AYAs living with a UPCP cope with their situation. Therefore, this study explores how AYAs with a UPCP cope with the daily challenges of their disease.MethodWe conducted semi-structured in-depth interviews among AYAs with a UPCP. Patients of the three AYA subgroups were interviewed (traditional survivors, new survivors, low-grade glioma survivors), since we expected different coping strategies among these subgroups. Interviews were analyzed using elements of the Grounded Theory by Corbin and Strauss. AYA patients were actively involved as research partners.ResultsIn total 46 AYAs with UPCP participated, they were on average 33.4 years old (age range 23–44) and most of them were woman (63%). Most common tumor types were low-grade gliomas (16), sarcomas (7), breast cancers (6) and lung cancers (6). We identified seven coping strategies in order to reduce the suffering from the experienced challenges: (1) minimizing impact of cancer, (2) taking and seeking control, (3) coming to terms, (4) being positive, (5) seeking and receiving support, (6) carpe diem and (7) being consciously alive.ConclusionThis study found seven coping strategies around the concept of ‘double awareness’ and showcases that AYAs are able to actively cope with their disease but prefer to actively choose life over illness. The findings call for CALM therapy and informal AYA support meetings to support this group to cope well with their disease.

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Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

Cited by 13 publications

References 79 publications

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

Need for numbers: assessing cancer survivors’ needs for personalized and generic statistical information

“Double awareness”—adolescents and young adults coping with an uncertain or poor cancer prognosis: A qualitative study

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