This study shows a significant disconnect between patient, PCP and oncologist expectations regarding PCP involvement at all phases of cancer, but predominantly at the diagnostic and treatment phases. PCP participation in coordination of care and transmission of information seemed to be the aspects where the most significant discordance was found. While several surveys conducted with PCPs30,32–34
have described PCP role in cancer care, few have questioned both groups at the same time4,37
and even fewer have compared their opinions with those of oncologists31,48
. This research brings new knowledge that is necessary before introducing strategies to keep PCPs in the loop at all phases of cancer. As highlighted by Sussman and Baldwin49
, these results further emphasize the need to improve collaboration between PCPs and oncologists, and to better define their respective responsibilities.
Most patients, PCPs and oncologists were in agreement with the recognition of PCP role in emotional support. This result is concordant with other studies2,17,25,37
including Klabunde et al’s48
, where 96% of PCPs reported being involved in evaluation/treatment of depression. The long-standing PCP-patient relationship puts them in a strategic position to provide emotional support. Symptom relief is another area where almost 80% of the three groups expected PCP involvement.
Patient and PCP contrasting views regarding PCP role in cancer care are aligned with those related to patterns of care between PCP and the oncology team. PCPs perceived themselves more involved in shared care and patients considered that parallel care occurred more often. A potential information bias related to the definition given for each category of pattern of care may have contributed to this finding. Even though definitions presented to patients and PCPs were similar, the two groups may have understood them differently, leading to misclassification between the parallel and shared care patterns. Since many patients considered oncologists as the main responsible for their care, they probably turned to their PCP mainly for other health problems, which corresponds to a parallel pattern of care. So, the high proportion of patients perceiving a parallel pattern of care is not surprising. Hickner et al37
found completely opposite results, with PCPs finding it challenging to stay in the loop and their patients having the impression that their PCP was regularly communicating with the oncologist. However, only a purposeful sample of 15 paired PCPs and cancer patients were interviewed in this qualitative study.
At all phases, PCPs expected to be involved in all aspects of care, which is consistent with results from other surveys2,7,16,33,34
. Contrastingly, oncologists expected PCP involvement mainly at the advanced/terminal phase. This also mirrors findings from other surveys where some PCPs felt that oncologists did not recognize their role in cancer care18,35
. In other studies, oncologists reported a willingness to share patient follow-up with PCPs,8
but they insisted on the need to better define their respective responsibilities.36
Beside the potential information bias mentioned earlier, this study has some other limitations. Patient participation rate was rather low, but it compares well with other studies conducted with such vulnerable population5,31,50
. Moreover, few patients withdrew, their main reasons for dropping out being death or cancer recurrence, which were inevitable in this population. PCP and oncologist participation rates were higher than in other surveys5,30,31,34
, but their characteristics were slightly different from the ones found in the 2007 NPS, considered as representative of the Canadian medical workforce. However, since findings from this study are in agreement with those from other surveys31,37,48
, the situation described here is probably close to reality.
Another limitation relies on the exclusive recruitment of lung cancer patients, which makes uncertain the generalizability to patients with other types of cancer. However, since the cohort included patients with a varied distribution in age, gender, stage at diagnosis and treatment, it gives insights into patient preferences on cancer follow-up care that may also apply to other cancers. Also, while patients reported how they perceived their own PCP involvement in their care, PCP questions were not directed to one particular patient. It is possible that some of their answers might have been different if they were answering about a specific patient. Nevertheless, a minority of PCPs had more than one patient recruited in the study. Finally, this research focused only on four aspects of care, but they are key domains of cancer care.
In summary, this study highlights the existence of a large gap between patient, PCP and specialist expectations toward PCP involvement in the cancer care trajectory. It reinforces the need to clearly outline PCP responsibilities in cancer care, taking into account oncologist role. These findings provide further support for the development of effective communication between PCPs and oncologists, in order to facilitate coordination and continuity of cancer care.