Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare
Patient quality of life (QoL) is a pivotal parameter, which is often used by clinicians to evaluate how treatments and therapies influence patients’ functionality and emotional state, aiming to ameliorate interventions and their outcomes. Currently, the majority of questionnaires assessing the QoL a...
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| Fformat: | Online |
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Firenze University Press
2022
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| Mynediad Ar-lein: | ONIX_20220601_9788855184618_539 |
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Dim Tagiau, Byddwch y cyntaf i dagio'r cofnod hwn!
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| _version_ | 1869514418505646080 |
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| author | Bertoldi, Serena Sofia, Francesca Bartolini, Barbara BENEDAN, LAURA Galeone, Carlotta Mariani, Paolo Zenga, Mariangela |
| author_browse | BENEDAN, LAURA Bartolini, Barbara Bertoldi, Serena Galeone, Carlotta Mariani, Paolo Sofia, Francesca Zenga, Mariangela |
| author_facet | Bertoldi, Serena Sofia, Francesca Bartolini, Barbara BENEDAN, LAURA Galeone, Carlotta Mariani, Paolo Zenga, Mariangela |
| author_sort | Bertoldi, Serena |
| collection | Directory of Open Access Books |
| description | Patient quality of life (QoL) is a pivotal parameter, which is often used by clinicians to evaluate how treatments and therapies influence patients’ functionality and emotional state, aiming to ameliorate interventions and their outcomes. Currently, the majority of questionnaires assessing the QoL are designed with the main contribution of clinicians and, therefore, include items that are cantered on the disease rather than on its multifaceted impact on people’s life. The failure to truly grasp the patients’ perspective, their needs, aspirations, perceptions and emotional state, is a major drawback that sets medical care on clinical parameters alone. We aimed to bridge this gap by establishing an innovative patient-designed QoL index to provide a new, unbiased tool considering the patients’ perception of their own well-being. Based predominantly on patients’ contribution, we defined specific areas (physical, emotional, social, functional, economical) and the respective characterizing features, and applied a pseudo-Delphi methodology combined with customer-satisfaction techniques. For each feature, the degree of agreement and the importance were assessed on a Likert scale. A synthetic QoL index was created by weighting the importance of each item. The methodology tested led to the development of a valid patient-designed QoL index, providing a way forward that could potentially be applied to many different conditions. The areas and the features included are indeed common to all patients, irrespective of their disease. We found that the process of methodology development enhanced the patients’ awareness of their subjective experience with the disease, and enabled them to better present their situation to the clinicians. The patient-designed QoL index provides a descriptive model that can be helpful to patients, clinicians and third parties and that can be further integrated with clinical details to obtain an overall view of the course of treatment for each patient. |
| format | Online |
| id | doab-20.500.12854ir-82748 |
| institution | Directory of Open Access Books |
| language | eng |
| publishDate | 2022 |
| publishDateRange | 2022 |
| publishDateSort | 2022 |
| publisher | Firenze University Press |
| publisherStr | Firenze University Press |
| record_format | ojs |
| spelling | doab-20.500.12854ir-827482022-06-02T04:16:40Z Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare Bertoldi, Serena Sofia, Francesca Bartolini, Barbara BENEDAN, LAURA Galeone, Carlotta Mariani, Paolo Zenga, Mariangela Quality of Life QoL Pseudo Delphi Methodology Patient awareness Patient experience Patient quality of life (QoL) is a pivotal parameter, which is often used by clinicians to evaluate how treatments and therapies influence patients’ functionality and emotional state, aiming to ameliorate interventions and their outcomes. Currently, the majority of questionnaires assessing the QoL are designed with the main contribution of clinicians and, therefore, include items that are cantered on the disease rather than on its multifaceted impact on people’s life. The failure to truly grasp the patients’ perspective, their needs, aspirations, perceptions and emotional state, is a major drawback that sets medical care on clinical parameters alone. We aimed to bridge this gap by establishing an innovative patient-designed QoL index to provide a new, unbiased tool considering the patients’ perception of their own well-being. Based predominantly on patients’ contribution, we defined specific areas (physical, emotional, social, functional, economical) and the respective characterizing features, and applied a pseudo-Delphi methodology combined with customer-satisfaction techniques. For each feature, the degree of agreement and the importance were assessed on a Likert scale. A synthetic QoL index was created by weighting the importance of each item. The methodology tested led to the development of a valid patient-designed QoL index, providing a way forward that could potentially be applied to many different conditions. The areas and the features included are indeed common to all patients, irrespective of their disease. We found that the process of methodology development enhanced the patients’ awareness of their subjective experience with the disease, and enabled them to better present their situation to the clinicians. The patient-designed QoL index provides a descriptive model that can be helpful to patients, clinicians and third parties and that can be further integrated with clinical details to obtain an overall view of the course of treatment for each patient. 2022-06-02T04:16:39Z 2022-06-02T04:16:39Z 2022-06-01T12:20:24Z 2021 chapter ONIX_20220601_9788855184618_539 2704-5846 https://library.oapen.org/handle/20.500.12657/56354 9788855184618 https://directory.doabooks.org/handle/20.500.12854/82748 eng Proceedings e report open access image/jpeg Attribution 4.0 International https://library.oapen.org/bitstream/20.500.12657/56354/1/26248.pdf Firenze University Press 10.36253/978-88-5518-461-8.30 10.36253/978-88-5518-461-8.30 2ec4474d-93b1-4cfa-b313-9c6019b51b1a 9788855184618 5 Florence open access |
| spellingShingle | Quality of Life QoL Pseudo Delphi Methodology Patient awareness Patient experience Bertoldi, Serena Sofia, Francesca Bartolini, Barbara BENEDAN, LAURA Galeone, Carlotta Mariani, Paolo Zenga, Mariangela Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title | Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title_full | Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title_fullStr | Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title_full_unstemmed | Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title_short | Chapter Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare |
| title_sort | chapter development of an innovative methodology to define patient designed quality of life a new version of a wellknown concept in healthcare |
| topic | Quality of Life QoL Pseudo Delphi Methodology Patient awareness Patient experience |
| topic_facet | Quality of Life QoL Pseudo Delphi Methodology Patient awareness Patient experience |
| url | ONIX_20220601_9788855184618_539 |
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