Skip to main content
Top
Published in: BMC Medicine 1/2015

Open Access 01-12-2015 | Research article

Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions

Authors: Viet-Thi Tran, Caroline Barnes, Victor M. Montori, Bruno Falissard, Philippe Ravaud

Published in: BMC Medicine | Issue 1/2015

Login to get access

Abstract

Background

Management strategies for patients with chronic conditions are becoming increasingly complex, which may result in a burden of treatment for patients. To develop a Minimally Disruptive Medicine designed to reduce the burden of treatment, clinicians need to understand which healthcare tasks and aggravating factors may be responsible for this burden. The objective of the present study was to describe and classify the components of the burden of treatment for patients with chronic conditions from the patient’s perspective.

Methods

We performed a multi-country qualitative study using an online survey and a purposive sampling strategy to select English-, French-, and Spanish-speaking participants with different chronic conditions. Participants were recruited by physicians, patients’ associations, advertisement on social media, and ‘snowballing’. The answers were analyzed by i) manual content analysis with a grounded theory approach, coded by two researchers, and ii) automatic textual analysis by Reinert’s method.

Results

Between 2013 and 2014, 1,053 participants from 34 different countries completed the online survey using 408,625 words. Results from both analyses were synthesized in a taxonomy of the burden of treatment, which described i) the tasks imposed on patients by their diseases and by their healthcare system (e.g., medication management, lifestyle changes, follow-up, etc.); ii) the structural (e.g., access to healthcare resources, coordination between care providers), personal, situational, and financial factors that aggravated the burden of treatment; and iii) patient-reported consequences of the burden (e.g., poor adherence to treatments, financial burden, impact on professional, family, and social life, etc.). Our findings may not be applicable to patients with chronic conditions who differ from those who responded to our survey.

Conclusions

Our taxonomy of the burden of treatment, provided by patients with chronic conditions from different countries and settings, supports the development of tools to ascertain the burden of treatment and highlights potential targets for interventions to minimize it.
Appendix
Available only for authorised users
Literature
1.
go back to reference Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012;380:37–43.CrossRefPubMed Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012;380:37–43.CrossRefPubMed
2.
go back to reference Bower P, Macdonald W, Harkness E, Gask L, Kendrick T, Valderas JM, et al. Multimorbidity, service organization and clinical decision making in primary care: a qualitative study. Fam Pract. 2011;28:579–87.CrossRefPubMed Bower P, Macdonald W, Harkness E, Gask L, Kendrick T, Valderas JM, et al. Multimorbidity, service organization and clinical decision making in primary care: a qualitative study. Fam Pract. 2011;28:579–87.CrossRefPubMed
4.
go back to reference Tinetti ME, Bogardus Jr ST, Agostini JV. Potential pitfalls of disease-specific guidelines for patients with multiple conditions. N Engl J Med. 2004;351:2870–4.CrossRefPubMed Tinetti ME, Bogardus Jr ST, Agostini JV. Potential pitfalls of disease-specific guidelines for patients with multiple conditions. N Engl J Med. 2004;351:2870–4.CrossRefPubMed
5.
go back to reference Boyd CM, Darer J, Boult C, Fried LP, Boult L, Wu AW. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294:716–24.CrossRefPubMed Boyd CM, Darer J, Boult C, Fried LP, Boult L, Wu AW. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294:716–24.CrossRefPubMed
7.
go back to reference Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas. 2012;3:39–49.CrossRefPubMedPubMedCentral Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas. 2012;3:39–49.CrossRefPubMedPubMedCentral
8.
go back to reference Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med. 2012;10:68.CrossRefPubMedPubMedCentral Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med. 2012;10:68.CrossRefPubMedPubMedCentral
9.
go back to reference Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.CrossRefPubMedPubMedCentral Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.CrossRefPubMedPubMedCentral
10.
go back to reference Vijan S, Hayward RA, Ronis DL, Hofer TP. Brief report: the burden of diabetes therapy: implications for the design of effective patient-centered treatment regimens. J Gen Intern Med. 2005;20:479–82.CrossRefPubMedPubMedCentral Vijan S, Hayward RA, Ronis DL, Hofer TP. Brief report: the burden of diabetes therapy: implications for the design of effective patient-centered treatment regimens. J Gen Intern Med. 2005;20:479–82.CrossRefPubMedPubMedCentral
11.
go back to reference Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9:235–43.CrossRefPubMedPubMedCentral Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9:235–43.CrossRefPubMedPubMedCentral
12.
go back to reference Gallacher K, Morrison D, Jani B, Macdonald S, May CR, Montori VM, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10:e1001473.CrossRefPubMedPubMedCentral Gallacher K, Morrison D, Jani B, Macdonald S, May CR, Montori VM, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10:e1001473.CrossRefPubMedPubMedCentral
13.
go back to reference Sav A, Kendall E, McMillan SS, Kelly F, Whitty JA, King MA, et al. ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21:665–74.PubMed Sav A, Kendall E, McMillan SS, Kelly F, Whitty JA, King MA, et al. ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21:665–74.PubMed
14.
go back to reference Denscombe M. The good research guide. Buckingham: Open University Press; 1997. Denscombe M. The good research guide. Buckingham: Open University Press; 1997.
15.
16.
go back to reference Eton DT, Elraiyah TA, Yost KJ, Ridgeway JL, Johnson A, Egginton JS, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas. 2013;4:7–20.CrossRefPubMedPubMedCentral Eton DT, Elraiyah TA, Yost KJ, Ridgeway JL, Johnson A, Egginton JS, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas. 2013;4:7–20.CrossRefPubMedPubMedCentral
17.
go back to reference Eton DT, Oliveira DR, Egginton J, Mair FS, May C, Montori VM. Understanding the burden of treatment in patients with multiple chronic conditions: Evidence from exploratory interviews. International Society for Quality of Life Research 2010 Conference London, England: Qual Life Res; 2010. (accessible in Quality of Life Research, Volume 10, Issue 1 Supplement, in “International Society for Quality of Life Research ~ 2010 Conference Abstracts”). Eton DT, Oliveira DR, Egginton J, Mair FS, May C, Montori VM. Understanding the burden of treatment in patients with multiple chronic conditions: Evidence from exploratory interviews. International Society for Quality of Life Research 2010 Conference London, England: Qual Life Res; 2010. (accessible in Quality of Life Research, Volume 10, Issue 1 Supplement, in “International Society for Quality of Life Research ~ 2010 Conference Abstracts”).
18.
go back to reference Sav A, McMillan SS, Kelly F, Kendall E, Whitty JA, King MA, et al. Treatment burden among people with chronic illness: what are consumer health organizations saying? Chronic Illn. 2013;9(3):220–32.CrossRefPubMed Sav A, McMillan SS, Kelly F, Kendall E, Whitty JA, King MA, et al. Treatment burden among people with chronic illness: what are consumer health organizations saying? Chronic Illn. 2013;9(3):220–32.CrossRefPubMed
19.
go back to reference Sav A, King MA, Whitty JA, Kendall E, McMillan SS, Kelly F, et al. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect. 2015;18:312–24.CrossRefPubMed Sav A, King MA, Whitty JA, Kendall E, McMillan SS, Kelly F, et al. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect. 2015;18:312–24.CrossRefPubMed
21.
go back to reference Holsti OR. Content Analysis. The handbook of social psychology. Reading, MA: Addison-Wesley; 1968. Holsti OR. Content Analysis. The handbook of social psychology. Reading, MA: Addison-Wesley; 1968.
22.
go back to reference Lingard L, Albert M, Levinson W. Grounded theory, mixed methods, and action research. BMJ. 2008;337:a567.CrossRefPubMed Lingard L, Albert M, Levinson W. Grounded theory, mixed methods, and action research. BMJ. 2008;337:a567.CrossRefPubMed
23.
go back to reference Reinert M. Une méthode de classification descendante hiérarchique: Application à l’analyse lexicale par contexte. Cahiers de l’Analyse des Données. 1983;3:187–98. Reinert M. Une méthode de classification descendante hiérarchique: Application à l’analyse lexicale par contexte. Cahiers de l’Analyse des Données. 1983;3:187–98.
24.
go back to reference Reinert M. Un logiciel d’analyse lexicale. Cahiers de l’Analyse des Données. 1986;11:471–84. Reinert M. Un logiciel d’analyse lexicale. Cahiers de l’Analyse des Données. 1986;11:471–84.
25.
go back to reference Noel-Jorand MC, Reinert M, Giudicelli S, Dassa D. A new approach to discourse analysis in psychiatry, applied to a schizophrenic patient’s speech. Schizophr Res. 1997;25:183–98.CrossRefPubMed Noel-Jorand MC, Reinert M, Giudicelli S, Dassa D. A new approach to discourse analysis in psychiatry, applied to a schizophrenic patient’s speech. Schizophr Res. 1997;25:183–98.CrossRefPubMed
26.
go back to reference Yang S, Kadouri A, Revah-Levy A, Mulvey EP, Falissard B. Doing time: a qualitative study of long-term incarceration and the impact of mental illness. Int J Law Psychiatry. 2009;32:294–303.CrossRefPubMedPubMedCentral Yang S, Kadouri A, Revah-Levy A, Mulvey EP, Falissard B. Doing time: a qualitative study of long-term incarceration and the impact of mental illness. Int J Law Psychiatry. 2009;32:294–303.CrossRefPubMedPubMedCentral
28.
go back to reference Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42:1758–72.CrossRefPubMedPubMedCentral Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42:1758–72.CrossRefPubMedPubMedCentral
29.
go back to reference Harrison C, Britt H, Miller G, Henderson J. Examining different measures of multimorbidity, using a large prospective cross-sectional study in Australian general practice. BMJ Open. 2014;4:e004694.CrossRefPubMedPubMedCentral Harrison C, Britt H, Miller G, Henderson J. Examining different measures of multimorbidity, using a large prospective cross-sectional study in Australian general practice. BMJ Open. 2014;4:e004694.CrossRefPubMedPubMedCentral
30.
go back to reference Fortin M, Stewart M, Poitras ME, Almirall J, Maddocks H. A systematic review of prevalence studies on multimorbidity: toward a more uniform methodology. Ann Fam Med. 2012;10:142–51.CrossRefPubMedPubMedCentral Fortin M, Stewart M, Poitras ME, Almirall J, Maddocks H. A systematic review of prevalence studies on multimorbidity: toward a more uniform methodology. Ann Fam Med. 2012;10:142–51.CrossRefPubMedPubMedCentral
31.
go back to reference Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65:1041–51.CrossRefPubMed Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65:1041–51.CrossRefPubMed
32.
go back to reference Boyd CM, Wolff JL, Giovannetti E, Reider L, Weiss C, Xue QL, et al. Healthcare task difficulty among older adults with multimorbidity. Med Care. 2014;52:S118–25.CrossRefPubMedPubMedCentral Boyd CM, Wolff JL, Giovannetti E, Reider L, Weiss C, Xue QL, et al. Healthcare task difficulty among older adults with multimorbidity. Med Care. 2014;52:S118–25.CrossRefPubMedPubMedCentral
33.
go back to reference Ridgeway JL, Beebe TJ, Chute CG, Eton DT, Hart LA, Frost MH, et al. A brief Patient-Reported Outcomes Quality of Life (PROQOL) instrument to improve patient care. PLoS Med. 2013;10:e1001548.CrossRefPubMedPubMedCentral Ridgeway JL, Beebe TJ, Chute CG, Eton DT, Hart LA, Frost MH, et al. A brief Patient-Reported Outcomes Quality of Life (PROQOL) instrument to improve patient care. PLoS Med. 2013;10:e1001548.CrossRefPubMedPubMedCentral
34.
go back to reference Russell LB, Suh DC, Safford MA. Time requirements for diabetes self-management: too much for many? J Fam Pract. 2005;54:52–6.PubMed Russell LB, Suh DC, Safford MA. Time requirements for diabetes self-management: too much for many? J Fam Pract. 2005;54:52–6.PubMed
35.
go back to reference Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care. 2012;35:47–9.CrossRefPubMed Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care. 2012;35:47–9.CrossRefPubMed
36.
37.
go back to reference Duracinsky M, Herrmann S, Berzins B, Armstrong AR, Kohli R, Le Coeur S, et al. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. J Acquir Immune Defic Syndr. 2012;59:498–505.CrossRefPubMed Duracinsky M, Herrmann S, Berzins B, Armstrong AR, Kohli R, Le Coeur S, et al. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. J Acquir Immune Defic Syndr. 2012;59:498–505.CrossRefPubMed
39.
40.
41.
go back to reference Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA. 1995;273:724–8.CrossRefPubMed Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA. 1995;273:724–8.CrossRefPubMed
42.
go back to reference Streiner D, Norman G, Biases in responding. Health Measurement Scales: a practical guide to their development and use. 4th ed. Oxford: Oxford University Press; 2008. p. 103.CrossRef Streiner D, Norman G, Biases in responding. Health Measurement Scales: a practical guide to their development and use. 4th ed. Oxford: Oxford University Press; 2008. p. 103.CrossRef
43.
go back to reference Guthrie B, Payne K, Alderson P, McMurdo ME, Mercer SW. Adapting clinical guidelines to take account of multimorbidity. BMJ. 2012;345:e6341.CrossRefPubMed Guthrie B, Payne K, Alderson P, McMurdo ME, Mercer SW. Adapting clinical guidelines to take account of multimorbidity. BMJ. 2012;345:e6341.CrossRefPubMed
44.
go back to reference Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310:2503–4.CrossRefPubMed Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310:2503–4.CrossRefPubMed
Metadata
Title
Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions
Authors
Viet-Thi Tran
Caroline Barnes
Victor M. Montori
Bruno Falissard
Philippe Ravaud
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Medicine / Issue 1/2015
Electronic ISSN: 1741-7015
DOI
https://doi.org/10.1186/s12916-015-0356-x

Other articles of this Issue 1/2015

BMC Medicine 1/2015 Go to the issue