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. 2023 Sep 16;31(10):579.
doi: 10.1007/s00520-023-08035-4.

Assessing suffering of patients on cancer treatment and of those no longer treated using ESAS-Total Care (TC)

Guido Miccinesi  1 , Carla Ripamonti  2 , Silvia Leoni  3 , Monica Gandelli  4 , Patricia Di Pede  4 , Vania Visani  3 , Paolo Ambrosini  5 , Giulia De Feo  4 , Laura Bellandi  3 , Luisa Toffolatti  4 , Cosimo Chelazzi  6 , Consuelo Trinci  3 , Francesca Chiesi  7
Affiliations

Assessing suffering of patients on cancer treatment and of those no longer treated using ESAS-Total Care (TC)

Guido Miccinesi et al. Support Care Cancer. .

Abstract

Aim: The aim of the study was to assess the suffering of patients on oncologic treatment and of those no longer on treatment. Preliminarily, we aimed to confirm the psychometric properties of Edmonton Symptom Assessment System-Total Care (ESAS-TC) in different stages of the disease. The ESAS-TC screens physical and psychological symptoms, but also spiritual pain, discomfort deriving from financial problems associated with illness, and suffering related to social isolation.

Methods: A sample of consecutive advanced cancer patients on oncologic therapies treated at the Internistic and Geriatric Supportive Care Unit (IGSCU) of Istituto Nazionale dei Tumori, Milano, and of terminal patients no longer on treatment and cared for by the Fondazione ANT palliative home care team were asked to fill the ESAS-TC. In order to strengthen the previous validation study of the ESAS-TC, 3-ULS (to assess social isolation), JSWBS (to assess spiritual well-being), COST-IT (to assess financial distress), and KPS (to assess functional status) were administered too.

Results: The questionnaires were self-reported by 108 patients on treatment (52% >60 years old, female 53%, and 61% with KPS 90-100) and by 94 home care patients (71% >60 years old, female 51%, and 68% with KPS 10-50). The sound psychometric characteristics of ESAS-TC were confirmed. Patients on treatment showed lower total ESAS-TC score (19.3 vs 52.7, p<.001) after controlling for age and functional status, and lower financial distress (p.<001). Financial distress, spiritual suffering, and social isolation, after controlling for age, showed a significantly higher score in home care patients.

Conclusions: Only through an adequate routine assessment with validated tools is it possible to detect total suffering, the "Total pain" of patients, and treat it through a multidisciplinary approach. The study confirms the reliability and validity of the Italian version of ESAS-TC and the importance of supportive and early palliative care fully integrated with oncological treatment.

Keywords: Financial; Home palliative care; Isolation; Oncologic treatments; Psychometric validation; Spirituality; Terminal cancer; Total care.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Edmonton Symptom Assessment System–Total Care (ESAS-TC). English translation of the three additional items: Preoccupazione finanziaria legata alla malattia :  Worries  due to financial problems associated with  illness; Dolore spirituale (profonda sofferenza interiore non fisica):  Spiritual pain; Isolamento sociale: Social isolation
Fig. 2
Fig. 2
Differences in financial distress, spiritual suffering, social isolation items, and total score (divided by the scale number of items) of the Edmonton Symptom Assessment System–Total Care (ESAS-TC) by treatment
Fig. 3
Fig. 3
Differences in spiritual suffering of the Edmonton Symptom Assessment System–Total Care (ESAS-TC) by treatment and religious believe/practice
See this image and copyright information in PMC

References

    1. Di Maio M, Basch E, Denis F, et al. on behalf of the ESMO Guideline Committee. The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guidelines. Ann Oncol. 2022;33(9):878–892. doi: 10.1016/j.annonc.2022.04.007. - DOI - PubMed
    1. Basch E. Patient-reported outcomes—harnessing patients’ voices to improve clinical care. N Engl J Med. 2017;376(2):105–108. doi: 10.1056/NEJMp1611252. - DOI - PubMed
    1. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(6):557–565. doi: 10.1200/JCO.2015.63.0830. - DOI - PMC - PubMed
    1. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197–198. doi: 10.1001/jama.2017.7156. - DOI - PMC - PubMed
    1. Denis F, Basch E, Septan A-L, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA. 2019;321(3):306–307. doi: 10.1001/jama.2018.18085. - DOI - PMC - PubMed