Routine application of patient-reported outcomes (PROs) has been shown to improve care needs through early identification and monitoring of symptoms, to improve quality of life by facilitating communication between patients and health care providers [ 1 , 2 ], to reduce emergency and unscheduled hospital admissions [ 1 ], and to prolong survival [ 3 , 4 ].
The Edmonton Symptom Assessment System (ESAS) is a PRO measure (PROM) for common symptom screening and monitoring in routine clinical practice and research. By virtue of its validity, simplicity, brevity, and ease of use, the ESAS has been widely translated and applied in diverse settings, including palliative care, supportive care, cancer, nephrology, and hospital and ambulatory care [ 5 ]. Since its inception, the ESAS has been revised and validated in various PROMs, such as the ESAS-r, the ESAS-r+, and the most recently developed ESAS for Ambulatory Cancer settings (ESAS-r Cancer) [ 6 ]. This revised ESAS-r Cancer is of timely interest. Indeed, the addition of six symptoms/physical problems (diarrhea, constipation, numbness or tingling, problems with sleeping, thinking, and mobility) commonly affecting cancer patients enhances the usefulness of this assessment tool for routine screening of self-reported physical symptoms and anxiety and depression in daily clinical practice.
Most, though unfortunately not all, patients receiving treatment in cancer, supportive care, and palliative care are assessed via self-reported questionnaires specifically designed to evaluate physical symptoms. The same questionnaires are often used in research. In both clinical practice and research, however, patients are reluctant to routinely fill in self-reported questionnaires. In Watson et al.’s study [ 6 ], for example, 71% of the patients did not complete and return the three questionnaires they were sent.
In our clinical practice, we have observed that during their first visits, patients respond to self-reported questionnaires willingly and with due care. A possible explanation for slackening motivation to respond is that regular assessment may engender disinterest in answering the same repeated questions about physical symptoms, particularly after symptoms have begun to improve acceptably and stabilize.
Furthermore, we can hypothesize that when symptoms and physical problems become acceptable, other problems emerge. Patients start to cope with their real needs and sources of worry, which they are often hesitant to discuss with their health care providers because not everyone and not all providers want to be involved in non-medical concerns. Studies into the implications of these points are missing.
Previous studies have shown that, whichever the disease stage, the needs underlying distress may be spiritual [ 7 , 8 ], social [ 9 – 12 ], or financial [ 13 – 15 ], a lack of meaning or hope in life, feeling like a burden, and conflicts within the family [ 7 , 8 ]. We cannot know the extent and the ways in which such suffering can interfere with a patient’s well-being, sleep, and appetite or lead to fatigue, anxiety, and depression unless we conduct a comprehensive assessment of PROs that address a patient’s most basic needs. When we see that physical symptoms do not improve or worsen, despite increased drug dosage or combination with other drugs, we should investigate further whether the suffering is physical and/or the patient feels misunderstood somehow.
A recent systematic review and expert report noted that spirituality is important for most patients with a serious illness, spiritual needs are common, and spiritual care is keenly desired by these patients. Also, spirituality can influence medical decision-making. The provision of spiritual care was found to be associated with better end-of-life outcomes, while unaddressed spiritual needs were associated with poorer patient quality of life. Despite this evidence, the spiritual needs of patients with serious illness often go unmet [ 7 ].
Tracy Balboni and Christina Puchalsky, two researchers in spiritual care [ 7 , 8 ], have strongly suggested that front-line physicians and nurses should assess spiritual needs by plainly asking patients, for example, “Are you in peace?, Do you have spiritual pain?, Do you need spiritual help?, Do you have or would you like to have someone you can talk to about spiritual or faith matters?” They underlined the importance of eliciting patient needs in order to adequately address supportive care needs.
We realize that while assessment on a numerical scale from 0 to 10 or a verbal scale may not be the ideal tool, it can determine whether a concern or an unmet need is present or not and if present, how serious it is.
This also holds for the assessment of anxiety and depression, which is evaluated first on a scale from 0 to 10; when the score is > 3 out of 10, it is useful to study the symptoms closer with a specific questionnaire such as the Hospital Anxiety Depression Score (HADS) [ 9 ].
Just like physical symptoms, anxiety and depression, first-level screening of other concerns can be conducted by an oncologist, physician or nurse on the palliative care team or a general practitioner, whereas in-depth spiritual assessment can be done by a chaplain, pastoral counsellor, spiritual director, religious leader or other health care provider on the care team who has received appropriate training or by a social worker to help patients in dealing with social and financial problems. The patient is taken on by a team with diverse competences but united in seeking a common goal: a holistic approach to suffering. This is especially important in clinical practice in which screening can be used to disclose financial needs [ 10 , 11 ], loneliness, and social problems [ 12 ].
In 2012, the ESAS was revised with the addition of two questions about spiritual pain and financial distress. This version was called ESAS-SF but was never validated. For their retrospective study of 292 encounters of advance-stage cancer patients, Delgado-Guay et al. [ 13 ] applied the ESAS-SF and found a correlation between spiritual pain and physical and psychological distress in over 40% of patients. In a later study investigating meaning in life as an indicator of resilience. Gravier et al. [ 14 ] reported that meaning in life correlated with spiritual pain, depression, and financial distress.
In 2022, ESAS-Total Care (ESAS-TC) was developed and validated in patients undergoing cancer treatment and in those with terminal cancer [ 15 , 16 ]. The tool does provide for asking three basic questions: worries due to financial problems associated with illness, spiritual pain, and social isolation. In this way, a consultation can begin by addressing not only physical needs but also those underlying other needs. Patients can express themselves and we clinicians can better interpret the physical symptoms that patients experience.
Thus, a world opens where we can discover relationships between symptoms, problems, and unmet needs in cancer patients. We can discover whether patients are able to purchase the drugs we prescribe. In our study, we found that a part of the patient’s stress was explained uniquely by financial, spiritual, and social suffering [ 15 ]. Furthermore, our findings showed that the new items assess different specific features that can be distinguished from the physical and psychological symptoms assessed with the original ESAS scale. Our results also provide evidence for the criterion validity of the scales, demonstrating the ability of symptoms to predict perceived stress. This observation is shared by previous studies that found that spiritual pain (7), financial toxicity [ 17 ], and loneliness [ 18 ] are all related to a patient’s physical and psychological distress.
In their recently published prospective, longitudinal cohort study, Yanez et al. [ 17 ] analyzed data from 2305 participants in the Northwestern University Improving the Management of Symptoms during and following Cancer Treatment trial. Outcomes at baseline and at 3, 6, 9, and 12 months postbaseline included depressive symptoms, anxiety, and financial hardship (FH). Financial hardship emerged as a prominent issue, with nearly half of participants experiencing some level of difficulty, depressive symptoms, and anxiety related to FH. The authors noted that “These findings underscore the need for a comprehensive approach in cancer care that concurrently addresses anxiety, depressive symptoms, and FH, recognizing their interconnected impact.”
Not to be underestimated are social isolation and loneliness [ 18 ]. Survival is known to be shorter in socially isolated cancer patients. Strengthening social support may help to improve treatment outcomes and well-being and to prolong survival [ 19 ]. Among the many different factors that besides loneliness influence survival are financial distress and spiritual suffering [ 20 ]. Assessment should go beyond physical and psychological symptoms to include other aspects of life that make up well-being and suffering. Comprehensive assessment of spiritual suffering, social isolation, and financial worries should be integrated in clinical practice for screening to adequately address supportive care needs. This type of evaluation may move clinical and research toward personalized total cancer care. Unlocking patients’ spiritual insights is just one of the myriad ways to identify and address patient needs in comprehensive holistic care. However, we are just at the beginning, and it is necessary to understand the compliance and acceptance of patients towards PROMS that evaluate their needs in a comprehensive way.
Moreover, we certainly cannot solve every patient’s need. However, bringing out a problem with a simple question could, within a team effort with social workers, chaplains, and volunteers, also lead to an alleviation of the patient’s suffering. Does this require more work? Of course, yes, but we are working for the patient’s quality of life.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Author contributions
CR and CC wrote the manuscript.
Data availability
No datasets were generated or analysed during the current study.
Declarations
Competing interests
The authors declare no competing interests.
References
1. Di Maio M, Basch E, Denis F et al on behalf of the ESMO Guideline Committee (2022) The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guidelines. Ann Oncol 33(9):878–892 10.1016/j.annonc.2022.04.007 35462007
2. Yang LY Manhas DS Howard AF Olson RA Patient reported outcome use in oncology: a systematic review of the impact on patient-clinician communication Support Care Cancer 2018 26 1 41 60 10.1007/s00520-017-3865-7 28849277 Yang LY, Manhas DS, Howard AF, Olson RA (2018) Patient reported outcome use in oncology: a systematic review of the impact on patient-clinician communication. Support Care Cancer 26(1):41–60 28849277 10.1007/s00520-017-3865-7
3. Denis F Basch E Septan A-L Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer JAMA 2019 321 3 306 307 10.1001/jama.2018.18085 30667494 PMC6439676 Denis F, Basch E, Septan A-L et al (2019) Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA 321(3):306–307 30667494 10.1001/jama.2018.18085 PMC6439676
4. Barbera L Sutradhar R Seow H The impact of routine Edmonton Symptom Assessment System (ESAS) use on overall survival in cancer patients: results of a population-based retrospective matched cohort analysis Cancer Med 2020 9 19 7107 7115 10.1002/cam4.3374 32794634 PMC7541161 Barbera L, Sutradhar R, Seow H et al (2020) The impact of routine Edmonton Symptom Assessment System (ESAS) use on overall survival in cancer patients: results of a population-based retrospective matched cohort analysis. Cancer Med 9(19):7107–7115 32794634 10.1002/cam4.3374 PMC7541161
5. Hui D Bruera E The Edmonton Symptom Assessment System 25 years later: past, present and future developments J Pain Symptom Manag 2017 53 3 630 643 10.1016/j.jpainsymman.2016.10.370 PMC5337174 28042071 Hui D, Bruera E (2017) The Edmonton Symptom Assessment System 25 years later: past, present and future developments. J Pain Symptom Manag 53(3):630–643 10.1016/j.jpainsymman.2016.10.370 PMC5337174 28042071
6. Watson L, Link C, Qi S et al. (2024) Designing and validating a comprehensive patient-reported outcomes measure for ambulatory cancer settings: the revised Edmonton Symptom Assessment System for Cancer. JCO Oncol Prac 20(12):1764–1775 10.1200/OP.24.00088 PMC11649173 38954778
7. Balboni TA VanderWeele TJ Doan-Soares SD Spirituality in serious illness and health JAMA 2022 328 2 184 197 10.1001/jama.2022.11086 35819420 Balboni TA, VanderWeele TJ, Doan-Soares SD et al (2022) Spirituality in serious illness and health. JAMA 328(2):184–197 35819420 10.1001/jama.2022.11086
8. Puchalski CM, Sbrana A, Ferrell B et al (2019) Interprofessional spiritual care in oncology: a literature review. ESMO Open 4(1):e000465. 10.1136/esmoopen-2018-000465 10.1136/esmoopen-2018-000465 PMC6435249 30962955
9. Ripamonti C Bandieri E Pessi MA The Edmonton Symptom Assessment System (ESAS) as a screening tool for depression and anxiety in non-advanced patients with solid or haematological malignancies on cure or follow-up J Support Care Cancer 2014 22 3 783 793 10.1007/s00520-013-2034-x 24276952 Ripamonti C, Bandieri E, Pessi MA et al (2014) The Edmonton Symptom Assessment System (ESAS) as a screening tool for depression and anxiety in non-advanced patients with solid or haematological malignancies on cure or follow-up. J Support Care Cancer 22(3):783–793 10.1007/s00520-013-2034-x 24276952
10. Carrera PM Curigliano G Santini D ESMO expert consensus statements on the screening and management of financial toxicity in patients with cancer ESMO Open 2024 9 5 102992 10.1016/j.esmoop.2024.102992 38626634 PMC11033153 Carrera PM, Curigliano G, Santini D et al (2024) ESMO expert consensus statements on the screening and management of financial toxicity in patients with cancer. ESMO Open 9(5):102992. 10.1016/j.esmoop.2024.102992 38626634 10.1016/j.esmoop.2024.102992 PMC11033153
11. Knight TG, Deal AM, Dusetzina SB et al, (2018) Financial toxicity in adults with cancer: adverse outcomes and noncompliance. JCO Oncol Pract Oct 24:JOP1800120 10.1200/JOP.18.00120 30355027
12. Wang F Gao Y Han Z A systematic review and meta-analysis of 90 cohort studies of social isolation loneliness and mortality Nat Hum Behav 2023 7 8 1307 1319 10.1038/s41562-023-01617-6 37337095 Wang F, Gao Y, Han Z et al (2023) A systematic review and meta-analysis of 90 cohort studies of social isolation loneliness and mortality. Nat Hum Behav 7(8):1307–1319 37337095 10.1038/s41562-023-01617-6
13. Delgado-Guay MO Chisholm G Williams J Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic Palliat Support Care 2016 14 341 348 10.1017/S147895151500108X 26481034 Delgado-Guay MO, Chisholm G, Williams J et al (2016) Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic. Palliat Support Care 14:341–348 26481034 10.1017/S147895151500108X
14. Gravier AL Shamieh O Paiva CE Meaning in life in patients with advanced cancer: a multinational study J Support Care Cancer. 2019 28 8 3927 3934 10.1007/s00520-019-05239-5 PMC8582319 31858248 Gravier AL, Shamieh O, Paiva CE et al (2019) Meaning in life in patients with advanced cancer: a multinational study. J Support Care Cancer. 28(8):3927–3934 10.1007/s00520-019-05239-5 PMC8582319 31858248
15. Ripamonti C Leporati R De Feo G Italian Version of the Edmonton Symptom Assessment System (ESAS) Total Care (ESAS-TC): development and psychometric validation of patients undergoing cancer treatment or follow up J Support Care Cancer 2022 30 3 1923 1939 10.1007/s00520-021-06594-y 34623487 Ripamonti C, Leporati R, De Feo G et al (2022) Italian Version of the Edmonton Symptom Assessment System (ESAS) Total Care (ESAS-TC): development and psychometric validation of patients undergoing cancer treatment or follow up. J Support Care Cancer 30(3):1923–1939 10.1007/s00520-021-06594-y 34623487
16. Miccinesi G Ripamonti C Leoni S Assessing suffering of patients on cancer treatment and of those no longer treated using ESAS–Total Care (TC) J Support Care Cancer 2023 31 10 579 10.1007/s00520-023-08035-4 PMC10505109 37715838 Miccinesi G, Ripamonti C, Leoni S et al (2023) Assessing suffering of patients on cancer treatment and of those no longer treated using ESAS–Total Care (TC). J Support Care Cancer 31(10):579 10.1007/s00520-023-08035-4 PMC10505109 37715838
17. Yanez B; Perry LM; Peipert JD et al (2024) Exploring the relationship among financial hardship, anxiety, and depression in patients with cancer: a longitudinal study. JCO Oncol Pract 20:1776–178 10.1200/OP.24.00025 PMC11649185 39146505
18. Deckx L van den Akker M Buntinx F Risk factors for loneliness in patients with cancer; a systematic literature review and meta-analysis Eur J Oncology Nurs 2014 18 466 477 10.1016/j.ejon.2014.05.002 24993076 Deckx L, van den Akker M, Buntinx F (2014) Risk factors for loneliness in patients with cancer; a systematic literature review and meta-analysis. Eur J Oncology Nurs 18:466–477 10.1016/j.ejon.2014.05.002 24993076
19. Moore S, Leung B, Bates A, Ho C (2018) Social isolation: impact on treatment and survival in patients with advanced cancer. J Clin Oncol 36(34_suppl): 156–156
20. Ripamonti C, Chelazzi C (2024) Total pain, opioids, and immune checkpoint inhibitors in cancer patient survival. Esmo Open 9(9):103688. 10.1016/j.esmoop.2024.103688 10.1016/j.esmoop.2024.103688 PMC11402394 39216187