Insert Table 2 Determinants that influence patient’s treatment decision according to the interviewees, classified in the three categories of Bandura’s Social Cognitive theory9 about here
According to the literature, emotions, such as being completely shaken, a loss of concentration and fear induced by the diagnosis, make it more difficult for a patient to participate in a treatment decision.11-13 Many patients prefer a collaborative role, which means that the patient and the clinician jointly decide on the most appropriate treatment.14 For the determinant ‘a trusting relationship between the healthcare professional and the patient,’ good communication skills of the part of the healthcare professional, like empathy and mutual respect, are important.11,15,16 Information regarding potential impacts on daily life13,15,17 and a time out period to consider treatment options are needed for patients to participate in their treatment decisions.18,19 The patients’ need for information being met in a way that patients understand and that is tailored to them are also important conditions for patient participation.16,18,20 However, in general, patients’ recall of medical information is often low; 40% to 80% of the medical information presented at a clinical visit is forgotten by patients immediately.21
During the observations, it was noticed that there was an overall difference in the emotions associated with the diagnoses between the option and decision talks. During the option talks, patients were completely shaken, while during the decision talks, patients showed a greater urge to survive and/or more hope for survival.
Patients (both in observations and interviews) indicated that they are particularly interested in information about the impact of the treatment options on their daily life long-term, more so than, for example, the type of surgery. Interviewed patients mentioned that a trusting relationship with the healthcare professional is essential for SDM. They added that the reliability, dedication and professional attitude of the healthcare professionals strengthens this relationship. The interviewed healthcare professionals mentioned that asking questions related to the patient’s quality of life and life goals in the option and decision talks facilitates the patient’s participation in SDM and their ability to make an informed decision. It also helps them to get a better view of the patient’s context. The interviewed healthcare professionals also emphasised that when patients are confronted with the diagnosis of pancreatic cancer, emotions, such as loss of concentration, fear and feeling completely shaken, could lead to a poor recall of information and can make it more difficult for patients to participate in their treatment decisions. The healthcare professionals suggested that information recall can be improved during SDM by audio recording these talks, which is not yet common practice. They also mentioned that a reasonable time out period to consider the treatment options is needed for patient participation in treatment decisions.
Discussion
Statement of principal findings
In this study, we found that the most prominent determinants that influence a patient’s treatment decision during SDM are related to ‘emotions due to diagnosis’, ‘the patient’s participation role’, ‘a trusting relationship between the healthcare professional and the patient’ and ‘information provided by healthcare professionals’. Patient characteristics and social support contribute less to a patient’s treatment decisions. In addition, most patients prefer a collaborative role in SDM. A collaborative role can be improved by supporting information recall during the option talks, allowing for an adequate time out period, and developing a trusting relationship between the healthcare professional and the patient. Improved patient participation leads to better SDM.
Interpretation within the context of the wider literature
Previous research has shown that SDM is supported by the knowledge gained by patients and leads to more confidence in treatment decisions and more active patient involvement. Moreover, in many situations, informed patients opt for more conservative treatment options.5 This may explain why 30% of the elderly pancreatic cancer patients with comorbidities (see above) at the Radboud University Medical Center did not opt for surgery in their decision talks. These patients realised that, although they were indicated and referred for curative surgery, the 5-year survival is still low and the chances of complications with a significant impact on the quality of life are high. In addition, the trustworthiness of the healthcare professionals, and an open and honest discussion about the multiple treatment options and their potential impacts on the patient’s daily life, could have contributed to patients’ decision to not opt for surgery. A trusting relationship between healthcare professionals and patients, and communication tailored to the patient’s perspective, are well-known facilitators of SDM.6
In our study, the observed and interviewed patients seemed to prefer collaborative participation. However, patients’ participation roles can vary between active, collaborative and passive.13,16,18 Therefore, the clinicians’ knowledge of the patients’ preferred role is important5,6 and was mentioned as a determinant in our study. We also found that a time out period is important for patients to consider treatment options and should be an essential part of SDM. Patients need time to deliberate with others (i.e., the family, a GP) after receiving the information about treatment options to explore their preferences regarding these options.5,11 A patient’s personal skills, such as the ability to process information and to make decisions19, demographic characteristics (i.e., age, gender, educational level)13,14,20 and the severity of the disease, especially in case of pancreatic cancer, influence the participation role preferred by the patient.14 We found an ambivalence on the part of interviewees regarding the influence of demographic characteristics; in this study, some interviewees mentioned that personality is a more important determinant for patient participation than demographic characteristics. Although the subcategory ‘social support’ was less prominent in our study, this determinant has been shown to influence the treatment decisions of patients with cancer.18,20,22
Strengths and limitations
A strength of this study is that the literature review has been supplemented by interviews and observations. The literature review enabled us to get an overview of the subject area and the interviews and observational studies gave us in-depth information from the involved healthcare professionals and patients. To ensure a broad range of perspectives, different types of healthcare professionals were included. The focus of our study was on patients with pancreatic cancer, but most of the included studies also provided information about other types of life-threatening cancers (e.g., lung, breast and colorectal cancers). A generalisation of the determinants of SDM could be valuable for other oncological practices.
A limitation is that only eight patients were observed and only two patients were interviewed for reasons of feasibility. Patients can only reflect on their own experiences and, to get a broader picture of patients’ perspectives, more patients will need to be included in future studies. Another limitation is that the evidence obtained from the literature review depends upon the quality of the included studies. The developed four-point score tool used here for the methodological assessment of the quality of the studies was not validated.
Implications for clinical practice and research
In this study, we identified several determinants that influence SDM in patients with pancreatic cancer during their option and decision talks. Insight into these determinants might be valuable for clinical practice, as it provides suggestions for a more adequate SDM process. For example, the current results show that it is important to establish a trusting relationship with mutual respect to facilitate the preferred participation role of a patient. In addition, tailor-made and understandable information on treatments should be provided to patients, with a focus on the potential consequences for their quality of life. A time out period for patients is also needed for the consideration of treatment options. Moreover, healthcare professionals must be aware, especially during option talks, that patients may subsequently experience a poor recall of the information discussed. To improve information recall, further research on tools to aid in this process is recommended. In this study, audio recording was mentioned as a potential improvement tool for SDM. A future (qualitative) study might provide insight into the appropriate tools to improve SDM, the facilitators and barriers for their implementations, and the experiences of patients and healthcare professionals with these tools.
Conclusions
Based on the determinants found in this study, better information recall, tailor-made understandable information about treatment options and the potential consequences for daily life, and the development of a trusting relationship between patients and healthcare professionals, are needed to support pancreatic cancer patients in their treatment decisions. These determinants enable patients to take a collaborative role in their care, which is typically the preferred role for patient participation in SDM during option and decision talks.
References
1. National Cancer Institute in the Netherlands. Available from: https://www.iknl.nl/en [Accessed date: 19 November 2021].
2. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69(1):7-34.
3. Hata T, Motoi F, Ishida M, Naitoh T, Katayose Y, Egawa S, et al. Effect of Hospital Volume on Surgical Outcomes After Pancreaticoduodenectomy: A Systematic Review and Meta-analysis. Ann Surg. 2016;263(4):664-72.
4. Gianotti L, Besselink MG, Sandini M, Hackert T, Conlon K, Gerritsen A, et al. Nutritional support and therapy in pancreatic surgery: A position paper of the International Study Group on Pancreatic Surgery (ISGPS). Surgery. 2018;164(5):1035-48.
5. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared Decision Making: A Model for Clinical Practice. J Gen Intern Med. 2012;27(10):
1361-7.
6. Covvey JR, Kamal KM, Gorse EE, Mehta Z, Dhumal T, Heidari E, et al. Barriers and facilitators to shared decision-making in oncology: a systematic review of the literature. Support Care Cancer. 2019;27(5):1613-37.
7. Elwyn G, Durand MA, Song J, Aarts J, Barr PJ, Berger Z, et al. A three-talk model for shared decision making: multistage consultation process. BMJ. 2017;359:j4891.
8. Cochrane Netherlands. Assessment forms and other downloads [Available from: https://netherlands.cochrane.org/beoordelingsformulieren-en-andere-downloads, Accessed date: 19 November 2021].
9. Bandura A. Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ, USA: Prentice-Hall, Inc; 1986.
10. Hsieh H-F, Shannon SE. Three Approaches to Qualitative Content Analysis. Qual Health Res. 2005;15(9):1277-88.
11. Geessink NH, Schoon Y, van Herk HC, van Goor H, Olde Rikkert MG. Key elements of optimal treatment decision-making for surgeons and older patients with colorectal or pancreatic cancer: A qualitative study. Patient Educ Couns. 2017;100(3):473-9.
12. Schildmann J, Ritter P, Salloch S, Uhl W, Vollmann J. ’One also needs a bit of trust in the doctor … ’: a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making. Ann Oncol. 2013;24(9):2444-9.
13. Ziebland S, Chapple A, Evans J. Barriers to shared decisions in the most serious of cancers: a qualitative study of patients with pancreatic cancer treated in the UK. Health Expect. 2015;18(6):3302-12.
14. Hubbard G, Kidd L, Donaghy E. Preferences for involvement in treatment decision making of patients with cancer: a review of the literature. Eur J Oncol Nurs. 2008;12(4):299-318.
15. Ibrahim F, Sandström P, Björnsson B, Larsson AL, Drott J. ’I want to know why and need to be involved in my own care…’: a qualitative interview study with liver, bile duct or pancreatic cancer patients about their experiences with involvement in care. Support Care Cancer. 2019;27(7):2561-7.
16. Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp KG. Physician, patient, and contextual factors affecting treatment decisions in older adults with cancer and models of decision making: a literature review. Oncol Nurs Forum. 2012;39(1):E70-83.
17. Ankuda CK, Block SD, Cooper Z, Correll DJ, Hepner DL, Lasic M, et al. Measuring critical deficits in shared decision making before elective surgery. Patient Educ Couns. 2014;94(3):328-33.
18. Larnebratt A, Fomichov V, Bjornsson B, Sandstrom P, Larsson AL, Drott J. Information is the key to successful participation for patients receiving surgery for upper gastrointestinal cancer. European Journal of Cancer Care. 2019;28(2).
19. Sainio C, Lauri S, Eriksson E. Cancer patients’ views and experiences of participation in care and decision making. Nurs Ethics. 2001;8(2):97-113.
20. Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med. 2005;61(10):2252-64.
21. Barr PJ, Dannenberg MD, Ganoe CH, Haslett W, Faill R, Hassanpour S, et al. Sharing Annotated Audio Recordings of Clinic Visits With Patients-Development of the Open Recording Automated Logging System (ORALS): Study Protocol. JMIR Res Protoc. 2017;6(7):e121.
22. Geessink NH, Ofstad EH, Olde Rikkert MGM, van Goor H, Kasper J, Schoon Y. Shared decision-making in older patients with colorectal or pancreatic cancer: Determinants of patients’ and observers’ perceptions. Patient Educ Couns. 2018;101(10):1767-74.
Acknowledgements
We thank the participants for their contribution to the study.
Conflict of interest
The authors declare that they have no competing interests.
Contributorship
MvdK, LD and AJ conceived the design of the study. LD and MH-S led the writing of the first draft and revised this manuscript. LD collected the data. LD, MH-S and AJ analysed and interpreted the data. MvdK, AJ, KvL, PvW and IA contributed to the critical revision of the manuscript. All authors approved the final version of the manuscript for publication.
Ethics and other permissions
The study design has been presented to the Medical Ethical Committee of
the Radboud University Medical Center (registration number: 2021/7316). They declared ethical approval was not required under the Dutch national law.
Funding
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Tables
Table 1 Interviewees characteristics