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

Abstract

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.

Information needs of older patients newly diagnosed with cancer

“…35;36 Another option is to offer patients two shorter consultation rather than one longer meeting with their health care provider. 37 Having two shorter consultations helps patients process and recall the information that was provided, avoid information overload, more actively search for additional information to increase their understanding, and to involve their support persons to ask the questions most important to them. 37 An additional relevant factor to address unmet information needs is to allow for enough time: patients often feel like there is insufficient time during the consultation to ask questions, 29 or that they need to make a decision right away, even though most would prefer more time to consider their options.…”

Experiences of interaction between people with cancer and their healthcare professionals: A systematic review and meta-synthesis of qualitative studies

“…J o u r n a l P r e -p r o o f Abt Sacks et al, 2016;Albrecht et al, 2019;Appleton et al, 2018;Back et al, 2014;Candela et al, 2020;Couchman et al, 2019;den Herder-van der Eerden et al, 2017;Devitt et al, 2020;Donachie et al, 2020;Farias et al, 2017;Herrmann et al, 2021;Hillen et al, 2012;Hopmans et al, 2015;Jacobsen et al, 2015;Jordan et al, 2022;Kumar et al, 2020;Kvale and Bondevik, 2010;Lawhon et al, 2021;Lelorain et al, 2019;Lowe et al, 2021;Masel et al, 2016;Myren et al, 2021;Nababan et al, 2020;Niranjan et al, 2020;Noteboom et al, 2021;Pedersen et al, 2013;Prip et al, 2022;Retrouvey et al, 2019;Rocque et al, 2019;Salmon et al, 2011;Sattar et al, 2018;Schildmann et al, 2013;Twibell et al, 2020;van Bruinessen et al, 2013;Vaughan et al, 2021;Wong et al, 2011) Sub-category Example quotes (quality according to Critical Appraisal Skills Programme score)…”

“…You just loosen it up a bit." (Patient, female, 29 y, acute lymphoblastic leukemia) (Herrmann et al, 2021) Communication skills "[the information] was put so bluntly. And I thought it could have been more gentle.…”

Do you have any questions? An analysis of question asking patterns in surgical outpatient consultations

“…The increase in questions asked by patients and their companions when interruption(s) occurred could be explained by the downtime, allowing them to appreciate information given and formulate questions to fill voids in knowledge. While there is evidence for having two short consultations rather than a single long consultation, 21 the utility of this ‘downtime’ in a singular consultation could be explored in the future.…”