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A qualitative analysis and development of a conceptual model assessing financial toxicity in cancer patients accessing the universal healthcare system

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Abstract

Purpose

This paper illustrates a conceptual model for a new patient-reported outcome measure (PROM) aimed at measuring financial toxicity (FT) in oncological setting in Italy, where citizens are provided universal healthcare coverage.

Methods

Focus groups with overall 34 patients/caregivers in three different Italian centers (from Northern, Centre, and Southern Italy) and an open-ended survey with 97 medical oncologists were undertaken. Transcripts from focus groups and the open-ended survey were analyzed to identify themes and links between themes. Themes from the qualitative research were supplemented with those reported in the literature; concepts identified formed the basis for item development that were then tested through the importance analysis (with 45 patients) and the cognitive debriefing (with other 45 patients) to test relevance and comprehension of the first draft PRO instrument.

Results

Ten domains were extracted by analyzing 156 concepts generated from focus groups and the open-ended survey. After controlling for redundancy, 55 items were generated and tested through the importance analysis. After controlling comprehension and feasibility through cognitive debriefing interviews, a first version of the questionnaire consisting of 30 items was devised.

Conclusions

This qualitative study represents the first part of a study conducted to develop a new PROM to assess FT in Italy, by using a bottom-up approach that makes the most of patients’ experiences and the health system analysis.

Trial registration

clinicaltrials.gov NCT03473379 first posted on March 22, 2018.

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Data availability

Data are available on request to the corresponding author.

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Acknowledgments

The authors thank Daniela Barberio, Ermelinda Quarata, Florencia Gonzalez Leone, Francesca Laudato, Maria Rosaria Esposito, Manuela Florio, Simona Bevilacqua, Marilena Martino, Chiara Palazzo, M. Teresa Ribecco, Giovanni De Matteis (Napoli), Gaetano Lacidogna, Elisa Sperti, Francesca Vignani, Donatella Marino, Sabrina Terzolo, Luisa Fusco, Annalisa Bellezza, Laura Polimeno (Torino) and Filomena Spasiano, Luana Fotia, and Barbara Matrascia (Roma).

Funding

The project is supported by the Fondazione AIRC (Associazione Italiana per la RicercasulCancro), a non-profit Italian charity, IG 2017 Id 20402.

Author information

Authors and Affiliations

  1. St Mary’s University, Twickenham, London, UK

    Silvia Riva

  2. Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, University Hospital of Milan, Milan, Italy

    Silvia Riva

  3. Fondazione GIMEMA, Health Outcomes Research Unit, Rome, Italy

    Fabio Efficace

  4. Dipartimento di Oncologia, Università di Torino, AO Ordine Mauriziano, Torino, Italy

    Massimo Di Maio

  5. Unità Sperimentazioni Cliniche, Istituto Nazionale per lo Studio e la Cura dei Tumori, IRCCS Fondazione Pascale, Via Mariano Semmola, 80131, Naples, Italy

    Jane Bryce, Laura Arenare, Giuliana Canzanella, Anna Gimigliano, Fiorella Romano, Alfonso Savio, Lucia Sparavigna, Maria Carmela Piccirillo & Francesco Perrone

  6. Dipartimento di Biomedicina e Prevenzione, Università degli Studi di Roma “Tor Vergata”, Rome, Italy

    Jane Bryce

  7. Ascension St. John Clinical Research Institute, Tulsa, USA

    Jane Bryce

  8. Federazione italiana delle Associazioni di Volontariato in Oncologia (FAVO), Rome, Italy

    Laura Del Campo, Elisabetta Iannelli & Francesca Traclò

  9. European Cancer Patient Coalition (ECPC), Brussels, Belgium

    Francesco De Lorenzo

  10. Associazione Italiana Malati di Cancro (AIMAC), Rome, Italy

    Francesco De Lorenzo

  11. Federation of Italian Cooperative Oncology Groups (FICOG), Milan, Italy

    Luciano Frontini

  12. Unità di Biostatistica, Istituto Nazionale per lo Studio e la Cura dei Tumori Regina Elena, IRCCS, Rome, Italy

    Diana Giannarelli

  13. Dipartimento di Economia, Università degli Studi di Messina, Messina, Italy

    Lara Gitto

  14. CERGAS (Centre for Health and Social Care Management), SDA Bocconi School of Management, Milan, Italy

    Claudio Jommi

  15. Azienda Ospedaliera Specialistica dei Colli, Naples, Italy

    Vincenzo Montesarchio

  16. Area Welfare e Salute, Centro Studi Investimenti Sociali (CENSIS), Rome, Italy

    Concetta Maria Vaccaro

  17. Statistica Medica, Università degli Studi della Campania “Luigi Vanvitelli”, Naples, Italy

    Lorenzo Guizzaro & Ciro Gallo

Authors
  1. Silvia Riva
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  2. Fabio Efficace
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  3. Massimo Di Maio
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  4. Jane Bryce
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  5. Laura Del Campo
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  6. Francesco De Lorenzo
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  7. Luciano Frontini
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  8. Diana Giannarelli
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  9. Lara Gitto
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  10. Elisabetta Iannelli
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  11. Claudio Jommi
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  12. Vincenzo Montesarchio
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  13. Francesca Traclò
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  14. Concetta Maria Vaccaro
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  15. Laura Arenare
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  16. Giuliana Canzanella
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  17. Anna Gimigliano
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  18. Fiorella Romano
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  19. Alfonso Savio
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  20. Lucia Sparavigna
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  21. Maria Carmela Piccirillo
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  22. Lorenzo Guizzaro
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  23. Ciro Gallo
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  24. Francesco Perrone
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Contributions

FP obtained funding. SR, JB, CG, and FP planned qualitative and statistical analysis and drafted the protocol. SR led all the focus groups and performed qualitative analyses. AG did literature search and review. JB, MDM, DG, VM, AS, LS, and FP allowed patients’ data collection. All authors participated in writing and approved the study protocol. SR, FE, MDM, CG, and FP drafted the manuscript. All authors contributed to the manuscript and approved the final version.

Corresponding author

Correspondence to Francesco Perrone.

Ethics declarations

Conflict of interest

SR has received personal fees from CSL-Behring and GlaxoSmithKline Foundation. MDM has received personal fees from Bristol Myers Squibb, Merck Sharp & Dohme, AstraZeneca, Janssen, Astellas, Pfizer, Eisai, and Takeda. FE has received personal fees from Amgen, Bristol Myers Squibb, Incyte, Orsenix, and Takeda. CJ has received personal fees from Amgen, Astra Zeneca, Biogen, Boehringer Ingelheim, Celgene, Gilead, GSK, Ipsen, Janssen-Cilag, Takeda, and Sanofi. VM has received personal fees from Bristol Myers Squibb and Italfarmaco; a member of his family is an employee in Bayer. CMV has received personal fees from Baxter, MSD, Novartis, Sanofi, and Sanofi Genzyme. MCP reports personal fees from Daichii Sankyo, personal fees from GSK, personal fees from MSD, grants from Roche, grants and personal fees from AstraZeneca, and non-financial support from Bayer, outside the submitted work. FP has received personal fees from Bayer, Ipsen, Astra Zeneca, Bristol Myers Squibb, Sandoz, Incyte, Celgene, Pierre Fabre, and Janssen-Cilag. The other authors have no conflict to disclose.

Ethics approval (include appropriate approvals or waivers)

The protocol has been approved on October 10, 2017, by the Ethical Committee of the coordinating Institution and subsequently by the Ethical Committees of all participating Institutions.

Consent to participate (include appropriate statements)

All caregivers and patients received detailed information on the study activities, signed the consent form, and authorized the use of their data according to European Directive n. 679/2016 and the Italian law (DL 196/2003) on the protection of personal data.

Consent for publication (include appropriate statements)

No consent was sought for publication because no personal information that can be associated with a single patient is being published.

Code availability (software application or custom code)

Not applicable.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix

Appendix

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Table 4 List of the 55 items ordered by importance score
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Riva, S., Efficace, F., Di Maio, M. et al. A qualitative analysis and development of a conceptual model assessing financial toxicity in cancer patients accessing the universal healthcare system. Support Care Cancer 29, 3219–3233 (2021). https://doi.org/10.1007/s00520-020-05840-z

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