Patient and Provider Attitudes and Preferences Regarding Early Palliative Care Delivery for Patients with Advanced Gastrointestinal Cancers: A Prospective Survey
, Gregory R. Pond 1, Marissa Slaven 2, Sukhbinder Dhesy-Thind 1, Jonathan Sussman 1 and Ralph M. Meyer 1
Round 1
Reviewer 1 Report
Comments and Suggestions for Authors
Well designed study with interesting and important findings.
In the discussion, the authors may want to explain how they propose to use these results for further studies and how to address some limitations of the current study. For instance it is unclear what the patients' understanding on prognosis was, and also how aware patients were about what SPC can provide for them, that may have impacted on their answers. These would provide areas, where intervention may help to improve quality of care.
Furthermore, a longitudinal study, looking at how these preferences and attitudes change, as disease progresses may also be appropriate.
Author Response
Thank you for reviewing our manuscript and providing helpful feedback. We have attempted to address your concerns, by item, as follows:
Reviewer 1
- In the discussion, the authors may want to explain how they propose to use these results for further studies and how to address some limitations of the current study. For instance it is unclear what the patients' understanding on prognosis was, and also how aware patients were about what SPC can provide for them, that may have impacted on their answers. These would provide areas, where intervention may help to improve quality of care.
Response: We have added to our discussion of the discordance in patients’ perspectives (Ln 310-324) on the domains of care, to build upon our mention of the need for patient activation and resource awareness, and considerations for future research.
“Further study is needed to understand the sources of this discordance.”
In Conclusions
“Clarifying patients’ understanding of their prognosis and illness trajectory is important to determine how this might mediate desired support from health care providers.”
We did not assess patients’ illness understanding and have added this as a study limitation and that this requires further exploration (Limitations paragraph).
“Although we timed the patient survey interviews to occur after their prognosis had been fully disclosed to them and discussed by their oncologist, we did not assess patients’ understanding of their illness, which could greatly influence their perspective regarding the care domains. Evaluating patients’ understanding of their life expectancy presents ethical challenges from a research perspective and requires exploration.”
- Furthermore, a longitudinal study, looking at how these preferences and attitudes change, as disease progresses may also be appropriate.
Response: We now mention this area for future research in the Conclusions. “Longitudinal study is also warranted on how patient preferences and attitudes change as their disease progresses.”
Reviewer 2 Report
Comments and Suggestions for Authors
Dear authors,
thank you for the opportunity to review your work. The conducted research is very interesting and novel, exploring recent concepts. Its particular significance lies in the fact that it investigates the alignment between patients and physicians, which is not a common subject of research. The methodology is well-designed and described, appropriate statistical procedures are used that can address the stated objectives and problems. The results are clearly presented, and in the discussion section, the obtained results are well-explained and compared with previous research.
The study explicitly mentions its limitations; recent literature are used.
Author Response
Thank you for reviewing our manuscript
Reviewer 3 Report
Comments and Suggestions for Authors
This a novel study comparing the attitudes of patients and their providers regarding the importance of palliative care domains, as well as patient perceptions and preferences regarding sources of support.
The introduction is clearly written and appropriately referenced.
In the Methods, the development and testing of the surveys is well described. It would be helpful to know if patients received any explanation of what each palliative care domain entails.
The Results section is somewhat confusing. In Methods section, the provider survey is said to include questions on the importance of the palliative care domains in general, as well as specific to the individual patient. In the text, Table S2 is said to "rate the relevance of each domain of palliative in reference the patient's current status"; however, the title of the table is "Physician survey responses by domain of palliative care as to general importance". Also, Table 2 includes a column on "Agreement between patients and physicians who deem domain most important or very relevant" and another on "Agreement between patients and physicians who deem domain as somewhat or less important"; why does one refer to relevance and the other to importance? In addition, the footnote to Table 3 reverses the numerator and denominator (it should be actual/preferred).
The Discussion is thorough. As mentioned above, it would be important to know that the patients received standardized explanation of the domains, and that low importance attributed to some domains was not a reflection of misunderstanding what they represent. Also, the results need to be more clearly reported before the reader can confidently understand their implications.
A few minor points:
Figure 1: Spell out column labels in full or add a footnote to explain abbreviations.
Please use the term "advance care planning" rather than "advanced care planning".
Please avoid using the term "terminally ill", which is imprecise (for example, it could mean "with incurable illness" or "at the end of life").
Author Response
Thank you for reviewing our manuscript and providing helpful feedback. We have attempted to address your concerns, by item, as follows:
Reviewer 3
The introduction is clearly written and appropriately referenced.
- In the Methods, the development and testing of the surveys is well described. It would be helpful to know if patients received any explanation of what each palliative care domain entails.
Response: We added the following detail regarding standardized explanation of the domains, to the Methods (2.3. Recruitment and Data Collection).
“Standardized explanations of the care domains were provided in the study materials given in advance and described to the participant at the beginning of the survey interview.”
- The Results section is somewhat confusing.
In Methods section, the provider survey is said to include questions on the importance of the palliative care domains in general, as well as specific to the individual patient.
In the text, Table S2 is said to "rate the relevance of each domain of palliative in reference the patient's current status"; however, the title of the table is "Physician survey responses by domain of palliative care as to general importance".
Response: We have corrected the reference to Table S2 – this is indeed the providers’ responses as to general importance.
“(see Supplemental Table S1 for full patient data and Table S2 for providers’ responses on general importance).”
- Also, Table 2 includes a column on "Agreement between patients and physicians who deem domain most important or very relevant" and another on "Agreement between patients and physicians who deem domain as somewhat or less important"; why does one refer to relevance and the other to importance?
Response: They are both intended to represent relevance to the patient, from the perspective of the patient and the provider. We corrected the column in Table 2 to indicate “relevance”. We have clarified this in the Table 2 title and in the reference to this Table in the text.
- In addition, the footnote to Table 3 reverses the numerator and denominator (it should be actual/preferred).
Response: the footnote is correct. We are reporting the number of patients in which a provider is the most responsible (Actual) relative to who the patient states they would like to be the most responsible (Optimal).
We have changed the Table 3 title (switched preferred and perceived) to avoid confusion.
- The Discussion is thorough. As mentioned above, it would be important to know that the patients received standardized explanation of the domains, and that low importance attributed to some domains was not a reflection of misunderstanding what they represent. Also, the results need to be more clearly reported before the reader can confidently understand their implications.
Response: Please see response to Item 1.
A few minor points:
- Figure 1: Spell out column labels in full or add a footnote to explain abbreviations.
Response: For the Figures, we will add the following footnote to the figure.
Figure abbreviations: Dz Manage=Disease Management, Physical=Physical Concerns, Psychological=Psychological Concerns, Social=Social Concerns, Spiritual=Spiritual Concerns, Practical=Practical Concerns, End of life=Making Plans in Case Your Health Worsens, Loss, Grief=Loss and Grief
- Please use the term "advance care planning" rather than "advanced care planning".
Response: Typo corrected throughout.
- Please avoid using the term "terminally ill", which is imprecise (for example, it could mean "with incurable illness" or "at the end of life").
Response: "terminally ill" changed to “with advanced disease” (in Discussion)
Round 2
Reviewer 3 Report
Comments and Suggestions for Authors
The feedback has been satisfactorily addressed.
