Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial
Background: The main objective of this study is to gain further insights on how chronic myeloid leukemia (CML) patients involved in an interventional clinical trial with the purpose of reaching treatment free remission (TFR) phase, perceived and experienced TFR failure. TFR failure was defined for t...
| Main Authors: | , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2019-02-01
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| Series: | Frontiers in Psychology |
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| Online Access: | https://www.frontiersin.org/article/10.3389/fpsyg.2019.00329/full |
| _version_ | 1818024401839325184 |
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| author | Lidia Borghi Sara Galimberti Claudia Baratè Massimiliano Bonifacio Enrico Capochiani Antonio Cuneo Franca Falzetti Alessandra Iurlo Francesca Lunghi Claudia Minotto Ester Maria Orlandi Giovanna Rege-Cambrin Simona Sica Sharon Supekar Jens Haenig Elena Vegni |
| author_facet | Lidia Borghi Sara Galimberti Claudia Baratè Massimiliano Bonifacio Enrico Capochiani Antonio Cuneo Franca Falzetti Alessandra Iurlo Francesca Lunghi Claudia Minotto Ester Maria Orlandi Giovanna Rege-Cambrin Simona Sica Sharon Supekar Jens Haenig Elena Vegni |
| author_sort | Lidia Borghi |
| collection | DOAJ |
| description | Background: The main objective of this study is to gain further insights on how chronic myeloid leukemia (CML) patients involved in an interventional clinical trial with the purpose of reaching treatment free remission (TFR) phase, perceived and experienced TFR failure. TFR failure was defined for the individual patient as either not being eligible for drug discontinuation or as having relapse in the TFR phase with reintroduction of nilotinib treatment.Methods: Using a qualitative approach, out of 25 patients with CML who experienced TFR failure 14 were interviewed. Patients’ views and experiences were explored using in-depth interviews, analyzed using the Interpretative Phenomenological Analysis (IPA).Results: The analysis of the interviews revealed that the experience of the diagnosis seems to have been lived as a traumatic break that has created a dichotomy, like an ambivalence in the ways in which CML patients perceived and experienced the whole disease journey, with contradictory feelings of both positive and negative emotions (e.g., a diagnosis of cancer, that is something distressing and of being afraid of, but also with a treatment and a life expectancies of which being grateful). This ambivalence of feelings was found to give meaning to the way in which patients cognitively and emotionally experienced the different steps of their disease history. Thus, four main issues, corresponding to different steps of the patients’ journey, were identified: (1) the moment of the diagnosis, (2) the experience of the illness journey: disease and treatment, (3) the moment of “TFR failure,” and (4) the impact of disease, treatment and relapse on the patient’s life.Conclusion: This qualitative analysis helps in understanding patients’ perspective, both in terms of getting access to the inner subjective experience of having CML and its strict relationship with the involvement in a trial or its cessation. Clinicians should consider that the way in which CML patients feel engaged in a clinical trial, create expectancies about TFR or experience the TFR failure is linked to the process of coping with the diagnosis, which is characterized by ambivalence. |
| first_indexed | 2024-12-10T03:59:38Z |
| format | Article |
| id | doaj.art-1e6f0d50c1e24084865d668154776977 |
| institution | Directory Open Access Journal |
| issn | 1664-1078 |
| language | English |
| last_indexed | 2024-12-10T03:59:38Z |
| publishDate | 2019-02-01 |
| publisher | Frontiers Media S.A. |
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| series | Frontiers in Psychology |
| spelling | doaj.art-1e6f0d50c1e24084865d6681547769772022-12-22T02:03:00ZengFrontiers Media S.A.Frontiers in Psychology1664-10782019-02-011010.3389/fpsyg.2019.00329389202Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical TrialLidia Borghi0Sara Galimberti1Claudia Baratè2Massimiliano Bonifacio3Enrico Capochiani4Antonio Cuneo5Franca Falzetti6Alessandra Iurlo7Francesca Lunghi8Claudia Minotto9Ester Maria Orlandi10Giovanna Rege-Cambrin11Simona Sica12Sharon Supekar13Jens Haenig14Elena Vegni15Department of Health Sciences, San Paolo Hospital, University of Milan, Milan, ItalyDepartment of Clinical and Experimental Medicine, Section of Hematology, University of Pisa, Pisa, ItalyDepartment of Clinical and Experimental Medicine, Section of Hematology, University of Pisa, Pisa, ItalyDepartment of Medicine, Section of Hematology, University of Verona, Verona, ItalyDepartment of Oncology, Azienda Toscana Nord Ovest, Livorno, ItalyInstitute of Hematology, University of Ferrara, Ferrara, ItalyInstitute of Hematology, Centro di Ricerca Emato-Oncologico (CREO), University of Perugia, Perugia, ItalyHematology Division, Foundation IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, ItalyHematology and Bone Marrow Transplantation Unit, San Raffaele Scientific Institute, Milan, ItalyUOS Hematology, UOC Oncologiaed Ematologia Oncologica AULSS3, Mestre, Italy0Hematology Unit, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy1Division of Hematology and Internal Medicine, “San Luigi Gonzaga” University Hospital, Orbassano, University of Turin, Turin, Italy2Fondazione Policlinico Universitario Agostino Gemelli – IRCSS, Università Cattolica del Sacro Cuore, Rome, Italy3Oncology Region Europe, Novartis Farma SpA, Origgio, Italy3Oncology Region Europe, Novartis Farma SpA, Origgio, ItalyDepartment of Health Sciences, San Paolo Hospital, University of Milan, Milan, ItalyBackground: The main objective of this study is to gain further insights on how chronic myeloid leukemia (CML) patients involved in an interventional clinical trial with the purpose of reaching treatment free remission (TFR) phase, perceived and experienced TFR failure. TFR failure was defined for the individual patient as either not being eligible for drug discontinuation or as having relapse in the TFR phase with reintroduction of nilotinib treatment.Methods: Using a qualitative approach, out of 25 patients with CML who experienced TFR failure 14 were interviewed. Patients’ views and experiences were explored using in-depth interviews, analyzed using the Interpretative Phenomenological Analysis (IPA).Results: The analysis of the interviews revealed that the experience of the diagnosis seems to have been lived as a traumatic break that has created a dichotomy, like an ambivalence in the ways in which CML patients perceived and experienced the whole disease journey, with contradictory feelings of both positive and negative emotions (e.g., a diagnosis of cancer, that is something distressing and of being afraid of, but also with a treatment and a life expectancies of which being grateful). This ambivalence of feelings was found to give meaning to the way in which patients cognitively and emotionally experienced the different steps of their disease history. Thus, four main issues, corresponding to different steps of the patients’ journey, were identified: (1) the moment of the diagnosis, (2) the experience of the illness journey: disease and treatment, (3) the moment of “TFR failure,” and (4) the impact of disease, treatment and relapse on the patient’s life.Conclusion: This qualitative analysis helps in understanding patients’ perspective, both in terms of getting access to the inner subjective experience of having CML and its strict relationship with the involvement in a trial or its cessation. Clinicians should consider that the way in which CML patients feel engaged in a clinical trial, create expectancies about TFR or experience the TFR failure is linked to the process of coping with the diagnosis, which is characterized by ambivalence.https://www.frontiersin.org/article/10.3389/fpsyg.2019.00329/fullchronic myeloid leukemianilotinibENESTPathTFRinner emotional experiencepsycho-emotional outcomes |
| spellingShingle | Lidia Borghi Sara Galimberti Claudia Baratè Massimiliano Bonifacio Enrico Capochiani Antonio Cuneo Franca Falzetti Alessandra Iurlo Francesca Lunghi Claudia Minotto Ester Maria Orlandi Giovanna Rege-Cambrin Simona Sica Sharon Supekar Jens Haenig Elena Vegni Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial Frontiers in Psychology chronic myeloid leukemia nilotinib ENESTPath TFR inner emotional experience psycho-emotional outcomes |
| title | Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial |
| title_full | Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial |
| title_fullStr | Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial |
| title_full_unstemmed | Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial |
| title_short | Chronic Myeloid Leukemia Patient’s Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial |
| title_sort | chronic myeloid leukemia patient s voice about the experience of treatment free remission failure results from the italian sub study of enestpath exploring the emotional experience of patients during different phases of a clinical trial |
| topic | chronic myeloid leukemia nilotinib ENESTPath TFR inner emotional experience psycho-emotional outcomes |
| url | https://www.frontiersin.org/article/10.3389/fpsyg.2019.00329/full |
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