Not asking cancer patients about their preferences does make a difference. A cross-sectional study examining cancer patients’ preferred and perceived role in decision-making regarding their last important cancer treatment

Herrmann, Anne; Hall, Alix; Sanson‐Fisher, Rob; Zdenkowski, Nicholas; Watson, Rochelle; Turon, Heidi

doi:10.1111/ecc.12871

Cited by 13 publications

(11 citation statements)

References 43 publications

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“…Involvement in resident's decision-making has to be improved, as 40% of US nursing homes residents reported being told nothing about their medical conditions (Wetle, Levkoff, Cwikel, & Rosen, 1988). This claiming of information and decision-making has been established in older patients in community dwelling (Herrmann et al, 2018;Paillaud et al, 2017). Moreover, NH staff wishes to improve their skills about cancer diagnosis and management (Lubeek, van Gelder, & van der Geer, 2016).…”

Section: Discussionmentioning

confidence: 99%

Prevalence of cancer and management in elderly nursing home residents. A descriptive study in 45 French nursing homes

Liuu

Guyot²,

Valéro

et al. 2018

Eur J Cancer Care

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This study aimed to determine cancer prevalence occurring after the age of 75 in 45 French nursing homes (NH), as well as residents’ characteristics and parameters associated with cancer‐specific management. Descriptive retrospective study including 214 residents (mean age, 89.7 years) with cancer diagnosed after age 75. The studied parameters were sociodemographic, functional, nutritional and cognitive data; comorbidity assessment; date of tumoral diagnosis; cancer type; tumoral stage; treatment plan; multidisciplinary staff decision and oncologic follow‐up. Our results showed that cancer prevalence in NH was 8.4 ± 1.1%, diagnosed before admission in 63% of cases. The most common tumoral sites were skin (26%), digestive tract and breast (18% for both); 12% had metastasis. Cognitive impairment was the most common comorbidity (42%), and 44% of the residents were highly dependent. Multivariate analysis showed that therapeutic decisions were associated with age. Older patients had less staging exploration (odd ratios [ORs], 0.90, 95% confidence interval [CI], 0.85–0.97) and underwent less cancer‐specific treatment (ORs, 0.92; 95%CI, 0.86–0.99). Oncologic follow‐up was more frequent in younger patients (ORs, 0.90; 95%CI, 0.81–0.99) and those with recent diagnosis (ORs, 0.37; 95%CI, 0.23–0.61). This study identified factors associated with substandard neoplastic management in elderly NH residents. It highlights needs for information, education and training in cancer detection to improve cancer consideration and care in NH.

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Section: Discussionmentioning

confidence: 99%

Prevalence of cancer and management in elderly nursing home residents. A descriptive study in 45 French nursing homes

Liuu

Guyot²,

Valéro

et al. 2018

Eur J Cancer Care

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“…Given that the original Control Preferences Scale was a card‐sorting task, this was not feasible to include in a pen and paper survey. Similar adapted versions of the scale have been used in other studies …”

Section: Methodsmentioning

confidence: 99%

Getting the right fit: Convergence between preferred and perceived involvement in treatment decision making among medical oncology outpatients

Mansfield

Bryant

Carey

et al. 2018

Health Science Reports

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Background and AimsWhile cancer patients' preferences for their level of involvement in treatment decision making (TDM) vary, previous research indicates a large proportion of patients are not experiencing TDM that meets their preferences. Evidence is needed to identify the characteristics of cancer patients who are less likely to report experiencing their preferred level of involvement in TDM, so that appropriate decision‐making support can be provided to them. We examined in a sample of medical oncology outpatients (1) the level of agreement between preferred and perceived involvement in TDM and (2) demographic, psychological, disease, and treatment characteristics associated with having unmet preferences for involvement in TDM.Methods and ResultsCancer patients from three medical oncology treatment centers in Australia completed surveys assessing demographic, disease and treatment variables, psychological distress, and preferred and perceived involvement in TDM. Data were collected between February 2013 and December 2014. Factors associated with having unmet TDM preferences were examined using logistic regression. There were 355 patients included in the analysis (75% response rate). The mean age (±SD) of the participants was 61 (±12), and 45% were male. Overall, 60% of participants reported that their preferences for involvement in TDM were met. No demographic, psychological, disease, or treatment characteristics were significantly associated with an increased probability of not having TDM preferences met.ConclusionsIn line with previous research, a large proportion (40%) of patients reported TDM experiences that were not in alignment with their preferences. Future research should explore additional characteristics that are associated with a lower likelihood of having TDM preferences met.

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“…Others preferred having a few days in-between two consultations to help them process all information and prepare the second consultation. Asking patients about their preferences may be the first step to ensure that care is tailored to their individual needs and wishes [ 51 , 52 ]. However, such an approach may be difficult to implement into the daily routines of busy clinics [ 53 ].…”

Section: Discussionmentioning

confidence: 99%

A qualitative study on patients’ and their support persons’ preferences for receiving one longer consultation or two shorter consultations when being informed about allogeneic hematopoietic stem cell transplantation

Herrmann

Holler

Edinger

et al. 2021

BMC Health Serv Res

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Background Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only potentially curative treatment option for many patients with hematological disorders but it includes a significant risk of mortality and long-term morbidity. Many patients and their support persons feel overwhelmed when being informed about alloHSCT and may benefit from improvements in consultation style and timing. Aims To explore, qualitatively, in a sample of hematological cancer patients and their support persons, their preferences for receiving one longer consultation or two shorter consultations when being informed about alloHSCT. Participants’ perceptions of when and how different consultation styles should be offered were also examined. Methods Semi-structured face-to-face and phone interviews were conducted. A purposeful sampling frame was used. Data were analysed using framework analysis. Results Twenty patients and 13 support persons were recruited (consent rate: 96%, response rate: 91%). Most patients (60%) and support persons (62%) preferred two shorter consultations over one longer consultation. This helped them digest and recall the information provided, remember questions they had, involve significant others and search for additional information. Patients would have liked to be offered paper and pen to take notes, take a break after 30 min and have their understanding checked at the end of the first consultation, e.g. using question prompt lists. Some patients and support persons preferred both consultations to happen on the same day to reduce waiting times as well as travel times and costs. Others preferred having a few days in-between both consultations to better help them prepare the second consultation. Participants reported varying preferences for different consultation styles depending on personal and disease-related characteristics, such as age, health literacy level and previous treatment. Conclusion To our knowledge, this is the first qualitative study to explore patients’ and their support persons’ preferences for having one longer consultation or two shorter consultations when being informed about alloHSCT. Receiving two shorter consultations may help patients process and recall the information provided and more actively involve their support persons. Clinicians should consider offering patients and their support persons to take a break after 30 min, provide paper and pen as well as question prompt lists.

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Not asking cancer patients about their preferences does make a difference. A cross-sectional study examining cancer patients’ preferred and perceived role in decision-making regarding their last important cancer treatment

Cited by 13 publications

References 43 publications

Prevalence of cancer and management in elderly nursing home residents. A descriptive study in 45 French nursing homes

Prevalence of cancer and management in elderly nursing home residents. A descriptive study in 45 French nursing homes

Getting the right fit: Convergence between preferred and perceived involvement in treatment decision making among medical oncology outpatients

A qualitative study on patients’ and their support persons’ preferences for receiving one longer consultation or two shorter consultations when being informed about allogeneic hematopoietic stem cell transplantation

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