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Measuring total suffering and will to live in an advanced cancer patient using a patient-centered outcome measure: a follow-up case study

2019-08-02Journal article Restricted access
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dc.contributor.authorJulião, Miguel
dc.contributor.authorAntunes, Bárbara
dc.contributor.authorNunes, Baltazar
dc.contributor.authorSobral, Maria Ana
dc.contributor.authorChaves, Petra
dc.contributor.authorRuna, Daniela
dc.contributor.authorBruera, Eduardo
dc.date.accessioned2020-04-28T09:14:10Z
dc.date.available2020-04-28T09:14:10Z
dc.date.issued2019-08-02
dc.description.abstractIntroduction: The concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient. Case Description: A 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores. Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.pt_PT
dc.description.sponsorshipB.A. is funded by the Foundation for Science and Technology (FCT)—Grant number PD/BD/113664/2015, Faculty of Medicine, University of Porto. Doctoral Program Clinical and Health Services Research is funded by the FCT—Grant number PD/0003/2013. E.B. has received research funding from Helsinn Health Research Funds. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Palliat Med. 2019 Aug 2. doi: 10.1089/jpm.2019.0137. [Epub ahead of print]pt_PT
dc.identifier.doi10.1089/jpm.2019.0137pt_PT
dc.identifier.issn1096-6218
dc.identifier.urihttp://hdl.handle.net/10400.18/6537
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherMary Ann Liebertpt_PT
dc.relation.publisherversionhttps://www.liebertpub.com/doi/abs/10.1089/jpm.2019.0137?rfr_dat=cr_pub%3Dpubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=jpmpt_PT
dc.subjectAdvanced Cancerpt_PT
dc.subjectCase Studypt_PT
dc.subjectEnd of Lifept_PT
dc.subjectPalliativept_PT
dc.subjectTotal Sufferingpt_PT
dc.subjectWill to Livept_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.titleMeasuring total suffering and will to live in an advanced cancer patient using a patient-centered outcome measure: a follow-up case studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.titleJournal of Palliative Medicinept_PT
rcaap.embargofctDe acordo com política editorial da revista.pt_PT
rcaap.rightsembargoedAccesspt_PT
rcaap.typearticlept_PT

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