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Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare

  • Barbara Bartolini
  • Serena Bertoldi
  • Laura Benedan
  • Carlotta Galeone
  • Paolo Mariani
  • Francesca Sofia
  • Mariangela Zenga

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.

  • Keywords:
  • Quality of Life,
  • QoL,
  • Pseudo Delphi,
  • Methodology,
  • Patient awareness,
  • Patient experience,
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Barbara Bartolini

HPS, Health Publishing and Services, Italy - ORCID: 0000-0001-9646-9310

Serena Bertoldi

Science Compass, Italy

Laura Benedan

University of Milano-Bicocca, Italy - ORCID: 0000-0003-0427-2487

Carlotta Galeone

University of Milano-Bicocca, Italy - ORCID: 0000-0003-1934-5167

Paolo Mariani

University of Milano-Bicocca, Italy - ORCID: 0000-0002-8848-8893

Francesca Sofia

Science Compass, Italy

Mariangela Zenga

University of Milano-Bicocca, Italy - ORCID: 0000-0002-8112-5627

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  • Publication Year: 2021
  • Pages: 155-159
  • Content License: CC BY 4.0
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  • Publication Year: 2021
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Chapter Information

Chapter Title

Development of an innovative methodology to define patient-designed quality of life: a new version of a wellknown concept in healthcare

Authors

Barbara Bartolini, Serena Bertoldi, Laura Benedan, Carlotta Galeone, Paolo Mariani, Francesca Sofia, Mariangela Zenga

Language

English

DOI

10.36253/978-88-5518-461-8.30

Peer Reviewed

Publication Year

2021

Copyright Information

© 2021 Author(s)

Content License

CC BY 4.0

Metadata License

CC0 1.0

Table of Contents

Book Title

ASA 2021 Statistics and Information Systems for Policy Evaluation

Book Subtitle

BOOK OF SHORT PAPERS of the on-site conference

Editors

Alessandra Petrucci, Bruno Bertaccini, Luigi Fabbris

Peer Reviewed

Publication Year

2021

Copyright Information

© 2021 Author(s)

Content License

CC BY 4.0

Metadata License

CC0 1.0

Publisher Name

Firenze University Press

DOI

10.36253/978-88-5518-461-8

eISBN (pdf)

978-88-5518-461-8

eISBN (xml)

978-88-5518-462-5

Series Title

Proceedings e report

Series Issn ISSN

2704-601X

Series E-Issn

2704-5846

29

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