What Matters in Cancer Survivorship Research? A Suite of Stakeholder-Relevant Outcomes
, Cynthia Kendell 2, Jonathan Sussman 3, Geoffrey A. Porter 1,2, Doris Howell 4 and Eva Grunfeld 5,6Round 1
Reviewer 1 Report
Excellent and thorough research which will add to the literature and inform future survivorship research priorities.
Additional detail in the tables would be helpful to indicate the special populations for which the study purposively sampled, as well as a breakdown of primary care, oncologist, policy-maker, decision maker. Was any analysis done to examine priorities for the special populations? In addition the majority male sample, and the lack of male caregiver perspectives is a limitation to be noted.
Author Response
Reviewer 1
Excellent and thorough research which will add to the literature and inform future survivorship research priorities.
Response: Thank you.
Additional detail in the tables would be helpful to indicate the special populations for which the study purposively sampled, as well as a breakdown of primary care, oncologist, policy-maker, decision maker. Was any analysis done to examine priorities for the special populations? In addition the majority male sample, and the lack of male caregiver perspectives is a limitation to be noted.
Response: Thank you for this comment. We have included additional detail in the form of a table footnote to indicate the breakdown of healthcare providers (oncologists, surgeons, primary care providers, registered nurses, and allied health professionals). With respect to special populations, we have removed the example of Indigenous peoples from our statement on purposive sampling. While we attempted to recruit participants with specific experience in Indigenous health and cancer care, only two participants (one healthcare provider, one decision-maker) discussed their experiences delivering cancer care to members of First Nations communities. However, we have added the below statement related to the pediatric, adolescent, and young adult cancer population in the Results section (pg. 7 of revised manuscript):
Four healthcare providers had a specific interest or expertise in pediatric, adolescent, and young adult cancers, while two survivors and one family/friend caregiver had lived experience with a young adult cancer.
Regarding gender and survivors/caregivers, men were the minority of participants (27.8%) and indeed no men participated who were in a caregiving role. We have added this as a limitation in the Discussion section (pg. 21 of revised manuscript):
Third, only 27.8% of survivors and family/friend caregivers were men, with no men participants in a caregiving role. Thus, the results may not fully reflect men’s perspectives on what is most important in the post-primary treatment phase of care.
Reviewer 2 Report
This manuscript was a pleasure to review. There were only 3 comments for the author's consideration.
- Table 1: Gender of survivor/caregiver with categories being female, male, or other. I suggest the authors change the categories to be categories of gender (woman, man, non-binary) and not sex (female, male, other).
- Page 12, Financial toxicity: the authors state that the participants frequently discussed financial toxicity. While this language seems like it would come from healthcare providers and decision makers, I did wonder whether this is the language that survivors/caregivers would use. Perhaps adding further descriptions of what constituted financial toxicity from participants' perspectives would convey what participants themselves constitute financial toxicity. Otherwise, it seems like a label for a known construct was deductively applied without participant-perspective evidence to support the label.
- While the authors frame the research as outcomes that matter to survivors/caregivers and other stakeholders, it seems odd that there is no explicit discussion of patient-reported outcome measures (PROMS) or patient-reported experience measures (PREMS), or how this particular study fits within the broader research or initiatives to develop and use PROMS/PREMS. Situating the current study in this larger context, or vice versa depending on the author's positioning, would be helpful.
Author Response
Reviewer 2
This manuscript was a pleasure to review. There were only 3 comments for the author's consideration.
Response: Thank you.
Table 1: Gender of survivor/caregiver with categories being female, male, or other. I suggest the authors change the categories to be categories of gender (woman, man, non-binary) and not sex (female, male, other).
Response: Thank you. We have revised the categories accordingly.
Page 12, Financial toxicity: the authors state that the participants frequently discussed financial toxicity. While this language seems like it would come from healthcare providers and decision makers, I did wonder whether this is the language that survivors/caregivers would use. Perhaps adding further descriptions of what constituted financial toxicity from participants' perspectives would convey what participants themselves constitute financial toxicity. Otherwise, it seems like a label for a known construct was deductively applied without participant-perspective evidence to support the label.
Response: We thank you for this very constructive comment, and entirely acknowledge this was a deductively applied label informed by the language used in the growing literature in this area. This was not the language used by participants themselves. Rather, people spoke of how their diagnosis and cancer affected them “financially” and the “burden” related to the costs of medications, travel, and having to take time off due to caregiving. On reflection, we feel the label should more appropriately reflect participants’ descriptions (and not just survivors/caregivers, but professionals also). Thus, we have changed this label to financial burden throughout the revised manuscript.
While the authors frame the research as outcomes that matter to survivors/caregivers and other stakeholders, it seems odd that there is no explicit discussion of patient-reported outcome measures (PROMS) or patient-reported experience measures (PREMS), or how this particular study fits within the broader research or initiatives to develop and use PROMS/PREMS. Situating the current study in this larger context, or vice versa depending on the author's positioning, would be helpful.
Response. Thank you. This is certainly a fair comment. While we did point to specific existing instruments that are PROMS and PREMS in the Discussion section, we did not explicitly link our work to broader initiatives related to PROMS/PREMS. We have now added the following paragraph in the Discussion section to discuss how our study fits within the broader research context in this area (pgs. 19-20 of revised manuscript):
While this study sought to inform future research in cancer survivorship in a practical way, the findings also reflect the shift to more person-centred care and have implications around the use of patient-reported outcome measures (PROMS) and patient-reported experience measures (PREMS) in cancer survivorship care. Indeed, all of the outcomes in the psychosocial, physical, economic, and informational domains should be assessed from the patient perspective, though some may be more challenging to assess than others as noted above. Notably, nine of 10 Canadian provinces have implemented some level of PROM/PREM reporting, using the Edmonton Symptom Assessment System-revised (ESAS-r).38 However, important gaps remain, including the screening of symptoms across the entire cancer care continuum, not simply during treatment.39 The findings from this study suggest that monitoring and improving cancer survivors’ experiences and outcomes will require instruments other than ESAS-r, which does not assess any of the economic and informational outcomes important to survivors, nor does it assess cognitive impairment, sexual health, fear of recurrence, or reintegration after cancer treatment. The identification of a minimal set of instruments to assess concerns in the post-treatment period, alongside clear implementation guidance, may be needed to ensure survivors’ concerns are met in a timely and comprehensive way. Given the challenges associated with implementing ESAS-r in a consistent and standardized way,39 the use of electronic and mobile health platforms may improve the collection of patient-reported data in the future.
Reviewer 3 Report
This study adresses an important question.I have only one minor limitation which may be translated into recommendations for future research.
The authors included a wide range of stakeholders (survivors, family/friend caregivers, oncology providers.
It would have been interesting to see whether the relevant outcomes identified differed according to type of stakeholder and according specific subgroups, i.e. by type of primary cancer, survivorship phase in cancer survivors, and type, experience and specialty of health care provider (see also Surbone, A., & Tralongo, P. (2016). Categorization of cancer survivors: Why we need it. J Clin Oncol, 34(28), 3372-3374.
A minor comment: The number of participants in each stakeholder group should be reported in the abstract.
Author Response
Reviewer 3
This study addresses an important question. I have only one minor limitation which may be translated into recommendations for future research.
Response: Thank you.
The authors included a wide range of stakeholders (survivors, family/friend caregivers, oncology providers. It would have been interesting to see whether the relevant outcomes identified differed according to type of stakeholder and according specific subgroups, i.e. by type of primary cancer, survivorship phase in cancer survivors, and type, experience and specialty of health care provider (see also Surbone, A., & Tralongo, P. (2016). Categorization of cancer survivors: Why we need it. J Clin Oncol, 34(28), 3372-3374.
Response: Thank you for this comment and the suggested reference. In our qualitative analysis, we did explore outcomes by stakeholder group but there were no key differences in identified outcomes across groups, with one exception: use of evidence-based practices. As stated in the Findings, it was the decision-maker and healthcare provider participants who emphasized the need to investigate the use of evidence-based practices, supports, and services. We did not, however, explore the impact of other noted factors, such as type of primary cancer or experience and specialty of provider. We entirely agree there is a need to better understand categories of survivors so that we can provide more personalized care and supports. Thus, we have added the following statement to the Conclusions section (pg. 21 of revised manuscript):
Future research should also identify and examine categories of survivors (e.g., based on factors such as cancer type, clinical course, and phase of care) to identify what is most important to survivors in these different categories.41 This would allow for a more personalized approach to delivering needed services and supports.
A minor comment: The number of participants in each stakeholder group should be reported in the abstract.
Response: We have now included the number of participants from each stakeholder group in the abstract.
