The patients included in the PRAIS study at OUH, who all had painful bone metastases, reported several clinically significant symptoms and complex problems which were undetected during the oncological consultation leading to referral to RT. At the baseline consultation the study team initiated interventions, often multiple, for half of the patients. About two thirds of the initiated interventions were connected to opioid management due to inadequate effects and/or information about the administration of previously prescribed analgesics. Prescriptions for treatment of common symptoms such as constipation and nausea, were also issued. Patients who received palliative care interventions, were characterised by significantly lower mean KPS, more use of opioids at inclusion and shorter survival time after inclusion compared with those not receiving any interventions. These findings indicate that palliative care needs were not sufficiently attended to in the outpatient routine oncological clinic.
It is well known that patients with advanced cancer typically experience multiple symptoms (27, 28). All the included patients received oncological and/or palliative care at their local hospitals or in the primary health care. Thus, it could be expected that symptoms and other palliative needs had been identified and treated by their responsible physicians or care teams. The finding that this was not always so is in line with other studies (7, 29) showing that several common symptoms in patients with advanced cancer such as pain, constipation, nausea, depression and poor sleep, may go undetected by health care providers and therefore remain inadequately controlled. A recent study reported that 30% of patients treated with palliative RT for pain did not receive any palliative care the last six months before RT (29). These findings underline the importance of integrating palliative care into mainstream oncology care as it is recommended by both ASCO and ESMO (9, 10) based upon the positive effects from a series of randomize studies (3–8). One may question whether that is the case at the patient level in this cohort since a minor assessment in this study detected a series of unmet needs.
Several factors may have contributed to our findings. One reason may be that health care providers underestimate symptom intensity (30), possibly because systematic symptom assessment is not an integral part of daily clinical routines and practice and therefore not performed (11). When routines for assessment are lacking it is demonstrated that up to 50% of patients’ symptoms and functional impairments may go undetected by clinicians (31). In pain management such underestimation is found to be an important barrier to adequate treatment (32), despite pain being one of the most studied symptoms in cancer and still experienced by more than half of cancer patients in general (15). Other potential reasons for our findings may be that their symptom burden had increased from referral for palliative RT until coming to OUH, or a long-time span between the consultations at the oncological clinic and the one with the PRAIS study team. However, this was only the case for a few patients since the time from referral to the appointment at the oncology outpatient clinic and start of RT was scheduled to be one week or less according to the study protocol.
The significant proportion of the symptoms identified by the PRAIS study team that probably should have been detected and taken care of at an earlier stage, underlines the premise of the decade-long debate of integration of oncology and palliative care to improve patient treatment and care (11). The fact that half of the patients reported unmet palliative care needs indicate that they did not receive necessary palliative care services and lack of integration of palliative care into mainstream cancer care opposed to existing guidelines (9, 10). We strongly believe that better routines for self-report of symptoms by patients that are recognized and managed by health care professionals in a patient-centred manner, are crucial for initiation of care before patients’ symptoms severely worsen (29). In the present study the unmet palliative care needs were disclosed by rapid reviews of the patients´ self-reports of symptoms. It has repeatedly been shown in several studies that routine use of PROMs improves symptom control, perceived QoL, patient and caregiver satisfaction, and communication between clinicians and patients (7, 8, 33, 34) and discloses previously unnoticed problems (35). Still barriers towards PROMs persist and relate to technology limitations, uncertainty about ease and benefits of use, and competing demands within established clinical workflows (36).
In most clinical studies data collected by PROMs are used as explanatory variables, secondary outcomes or, less often, as the primary study outcome. Thus, patient responses on PROMs are not evaluated during the study, by fear of influencing study results. This is not that relevant in an observational study such as PRAIS especially as the definition of RT effect was a combined measure of pain intensity and opioid dose i.e., if a substantial opioid dose was initiated the patient would be considered RT non-responder even if he or her experiencing stable or reduced pain. The fact that the study team consisting of a physician and a specialist nurse looked at the forms and implemented interventions as needed, underlines the benefit of study participation. From a clinical point of view, the better the symptom management and health status in patients with advanced cancer, the more likely it is that they can comply with treatment over time. In relation to this, we would like to point to the common misconception that patients with advanced cancer are too fragile and unwilling to participate in clinical studies and complete questionnaires (37). Gysels et al (38) have documented that palliative care patients have several good reasons for participating in research such as gratitude and concerns about care, having someone to talk to and need for information. Additionally, they did not perceive participation as time-consuming. Research participation may actually have a therapeutic benefit (39, 40) which also is supported by the present study.
Strengths of this study are the long experience in palliative care by the study team, and the fact that necessary interventions were implemented immediately, documented in the patient records and communicated to follow-up teams. Still some limitations apply. First, the patient population was heterogeneous in terms of disease stage, primary diagnosis and frailty, which is shown by the range in KPS and survival time from inclusion. Second, the self-report forms were subject to a quick review by the study team, with emphasis primarily being on scores of 4 and above (0-10 scale). However, it may well be that a symptom score of less than 4 also was perceived to be of importance to the individual patient. Additionally, persons from the study team participated in the development of the data extraction tool after they had consultations with the patients. Thus, it cannot be ruled out that they were aware of their own documentation in the patient records and that this have influenced what data to extract while other information may have been overlooked. Given the nature of this study and the fact that this report comes from one of the seven centres in the PRAIS study, results might not be representative of patient population in the study as a whole.