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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

  1. Asadi-Lari, M., Tamburini, M., & Gray, D. (2004). Patients' needs, satisfaction, and health related quality of life: towards a comprehensive model. Health Qual Life Outcomes, 2, pp.32.
  2. Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O., & Alberti, C. (2011). Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS One, 6(6), pp.e20476.
  3. Diamond, I. R., Grant, R. C., Feldman, B. M., Pencharz, P. B., Ling, S. C., Moore, A. M., & Wales, P. W. (2014). Defining consensus: a systematic review recommends methodologic criteria for reporting of Delphi studies. J Clin Epidemiol, 67(4), pp.401-409.
  4. Marbach, G. M., C., & Rizzi, A. (1991). Le previsioni. Fondamenti logici e basi statistiche. ETASLIBRI.
  5. Murphy, M. K., Black, N. A., Lamping, D. L., McKee, C. M., Sanderson, C. F., Askham, J., & Marteau, T. (1998). Consensus development methods, and their use in clinical guideline development. Health Technol Assess, 2(3), pp.i-iv, 1-88.
  6. Patrick, D. L., & Deyo, R. A. (1989). Generic and disease-specific measures in assessing health status and quality of life. Med Care, 27(3 Suppl), pp.S217-232.
  7. Pietersma, S., de Vries, M., & van den Akker-van Marle, M. E. (2014). Domains of quality of life: results of a three-stage Delphi consensus procedure among patients, family of patients, clinicians, scientists and the general public. Qual Life Res, 23(5), pp.1543-1556.
  8. Rabin, R., & de Charro, F. (2001). EQ-5D: a measure of health status from the EuroQol Group. Ann Med, 33(5), pp.337-343.
  9. Spindler, P., & Lima, B. S. (2018). Editorial: The European Patients Academy on Therapeutic Innovation (EUPATI) Guidelines on Patient Involvement in Research and Development. Front Med (Lausanne), 5, pp.310.
  10. The International Society for Quality of Life Research. What is QOL? Retrieved 27 May from <https://www.isoqol.org/what-is-qol/>.
  11. Trevelyan EG, R. N. (2015). Delphi methodology in health research: how to do it? Eurpean Journal of Integrative Medicine, 7, pp.423-428.
  12. Ware, J. E., Jr., Gandek, B., Guyer, R., & Deng, N. (2016). Standardizing disease-specific quality of life measures across multiple chronic conditions: development and initial evaluation of the QOL Disease Impact Scale (QDIS(R)). Health Qual Life Outcomes, 14, pp.84.
  13. Warner, K., See, W., Haerry, D., Klingmann, I., Hunter, A., & May, M. (2018). EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D. Front Med (Lausanne), 5, pp.270.
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  • Publication Year: 2021
  • Pages: 155-159
  • Content License: CC BY 4.0
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  • Publication Year: 2021
  • Content License: CC BY 4.0
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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

Bibliographic Information

Book Title

ASA 2021 Statistics and Information Systems for Policy Evaluation

Book Subtitle

BOOK OF SHORT PAPERS of the on-site conference

Editors

Bruno Bertaccini, Luigi Fabbris, Alessandra Petrucci

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

2704-601X

Series E-ISSN

2704-5846

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