A conceptual framework to develop a patient-reported experience measure of the quality of mental health care: a qualitative study of the PREMIUM project in France

References

• Steel Z, Marnane C, Iranpour C, et al. The global prevalence of common mental disorders: a systematic review and meta-analysis 1980–2013. Int J Epidemiol. 2014;43(2):476‑93.
   Web of Science ®Google Scholar
• Whiteford HA, Degenhardt L, Rehm J, et al. Global burden of disease attributable to mental and substance use disorders: findings from the Global Burden of Disease Study 2010. Lancet. 2013;382(9904):1575‑86.
   Web of Science ®Google Scholar
• Tafalla M, Salvador-Carulla L, Saiz-Ruiz J, et al. Pattern of healthcare resource utilization and direct costs associated with manic episodes in Spain. BMC Psychiatry. 2010;10(1):31.
   Google Scholar
• Broder MS, Greene M, Chang E, et al. Health care resource use, costs, and diagnosis patterns in patients with schizophrenia and bipolar disorder: real-world evidence from US claims databases. Clin Ther. 2018;40(10):1670‑82.
   Web of Science ®Google Scholar
• Mancuso A, Specchia M, Lovato E, et al. Economic burden of schizophrenia: the European situation. A scientific literature review. Eur J Public Health. 2014;24(suppl 2). https://doi.org/10.1093/eurpub/cku166.129.
   Google Scholar
• Greenberg PE, Fournier -A-A, Sisitsky T, et al. The economic burden of adults with major depressive disorder in the USA (2005 and 2010). J Clin Psychiatry. 2015;76(2):155‑62.
   Web of Science ®Google Scholar
• Charlson FJ, Baxter AJ, Dua T, et al. Excess mortality from mental, neurological and substance use disorders in the Global Burden of Disease Study 2010. Epidemiol Psychiatr Sci. 2015;24(2):121‑40.
   Web of Science ®Google Scholar
• Walker ER, McGee RE, Druss BG. Mortality in mental disorders and global disease burden implications: a systematic review and meta-analysis. JAMA Psychiatry. 2015;72(4):334‑41.
   Web of Science ®Google Scholar
• Institute of Medicine. Improving the quality of health care for mental and substance-use conditions. National Academies Press: Washington, DC; 2006.
   Google Scholar
• Nielssen O, McGorry P, Castle D, et al. The RANZCP guidelines for Schizophrenia: why is our practice so far short of our recommendations, and what can we do about it? Aust N Z J Psychiatry. 2017;51(7):670‑4.
   Web of Science ®Google Scholar
• Demyttenaere K, Bruffaerts R, Posada-Villa J, et al. Prevalence, severity, and unmet need for treatment of mental disorders in the World Health Organization World Mental Health Surveys.. JAMA. 2004;291(21):2581‑90.
   Web of Science ®Google Scholar
• Coldefy M, Le Neindre C. Les disparités territoriales d’offre et d’organisation des soins en psychiatrie en France: d’une vision segmentée à une approche systémique. Paris, France: Institut de Recherche et Documentation en Economie de la Santé (IRDES); 2014. Report no 558.
   Google Scholar
• Baca-Garcia E, Perez-Rodriguez MM, Basurte-Villamor I, et al. Fernandez del Moral AL, Jimenez-Arriero MA, et al. Diagnostic stability and evolution of bipolar disorder in clinical practice: a prospective cohort study. Acta Psychiatr Scand. 2007;115(6):473‑80.
   Web of Science ®Google Scholar
• Dassa D, Boyer L, Raymondet P, et al. One or more durations of untreated psychosis? Acta Psychiatr Scand. 2011;123(6):494.
   Web of Science ®Google Scholar
• Fond G, Boyer L, Andrianarisoa M, et al. Risk factors for increased duration of untreated psychosis. Results from the FACE-SZ dataset. Schizophr Res. 2018;195:529–14.
   Web of Science ®Google Scholar
• Lieberman JA, Fenton WS. Delayed detection of psychosis: causes, consequences, and effect on public health. Am J Psychiatry. 2000;157(11):1727‑30.
   Web of Science ®Google Scholar
• Csernansky JG, Schuchart EK. Relapse and rehospitalisation rates in patients with schizophrenia: effects of second generation antipsychotics. CNS Drugs. 2002;16(7):473‑84.
   Web of Science ®Google Scholar
• Hamilton JE, Passos IC, de Azevedo Cardoso T, et al. Predictors of psychiatric readmission among patients with bipolar disorder at an academic safety-net hospital. Aust N Z J Psychiatry. 2016;50(6):584‑93.
   Web of Science ®Google Scholar
• KEM B-L, Kok GD, Bockting CLH, et al. Effectiveness of psychological interventions in preventing recurrence of depressive disorder: meta-analysis and meta-regression. J Affect Disord. 2015;174:400‑10.
   Web of Science ®Google Scholar
• Hill M, Crumlish N, Clarke M, et al. Prospective relationship of duration of untreated psychosis to psychopathology and functional outcome over 12 years.. Schizophr Res. 2012;141(2–3):215‑21.
   Web of Science ®Google Scholar
• Saarni SI, Viertiö S, Perälä J, et al. Quality of life of people with schizophrenia, bipolar disorder and other psychotic disorders. Br J Psychiatry. 2010;197(5):386‑94.
   Web of Science ®Google Scholar
• Schürhoff F, Fond G, Berna F, et al. A National network of schizophrenia expert centres: an innovative tool to bridge the research-practice gap. Eur Psychiatry. 2015;30(6):728‑35.
   Web of Science ®Google Scholar
• Henry C, Etain B, Mathieu F, et al. A French network of bipolar expert centres: a model to close the gap between evidence-based medicine and routine practice. J Affect Disord. 2011;131(1–3):358‑63.
   Web of Science ®Google Scholar
• Gaebel W, Janssen B, Zielasek J. Mental health quality, outcome measurement, and improvement in Germany. Curr Opin Psychiatry. 2009;22(6):636‑42.
   Web of Science ®Google Scholar
• Herbstman BJ, Pincus HA. Measuring mental healthcare quality in the USA: a review of initiatives. Curr Opin Psychiatry. 2009;22(6):623‑30.
   Web of Science ®Google Scholar
• Glied SA, Stein BD, McGuire TG, et al. Measuring Performance in Psychiatry: a Call to Action. Psychiatr Serv. 2015;66(8):872‑8.
   Web of Science ®Google Scholar
• Parabiaghi A, Bonetto C, Ruggeri M, et al. Severe and persistent mental illness: a useful definition for prioritizing community-based mental health service interventions. Soc Psychiatry Psychiatr Epidemiol. 2006;41(6):457‑63.
   Google Scholar
• Ruggeri M, Leese M, Thornicroft G, et al. Definition and prevalence of severe and persistent mental illness. Br J Psychiatry. 2000;177(2):149‑55.
   Google Scholar
• Trzeciak S, Gaughan JP, Bosire J, et al. Association between medicare summary star ratings for patient experience and clinical Outcomes in US hospitals. J Patient Exp. 2016;3(1):6‑9.
   Google Scholar
• Wang DE, Tsugawa Y, Figueroa JF, et al. Association between the centers for medicare and medicaid services hospital star rating and patient outcomes. JAMA Intern Med. 2016;176(6):848‑50.
   Web of Science ®Google Scholar
• Coulter A. Measuring what matters to patients. BMJ. 2017;816. DOI:https://doi.org/10.1136/bmj.j816
   Google Scholar
• The Beryl Institute. Defining patient experience. [Accessed 2021 Jan 3]. Available at: https://www.theberylinstitute.org/page/DefiningPatientExp
   Google Scholar
• Agency for Healthcare Research and Quality. What is patient experience ? [Accessed 2021 Jan 3]. Available at: https://www.ahrq.gov/cahps/about-cahps/patient-experience/index.html
   Google Scholar
• Anhang Price R, Elliott MN, Zaslavsky AM, et al. Examining the role of patient experience surveys in measuring health care quality. Med Care Res Rev. 2014;71(5):522‑54.
   Web of Science ®Google Scholar
• Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3(1):e001570.
   PubMed Web of Science ®Google Scholar
• Fernandes S, Fond G, Zendjidjian X, et al. <p>Measuring the Patient Experience of Mental Health Care: a Systematic and Critical Review of Patient-Reported Experience Measures. Patient Prefer Adherence. 2020;14:1‑15.
   Web of Science ®Google Scholar
• Jenkinson C. The Picker Patient Experience questionnaire: development and validation using data from in-patient surveys in five countries. Int J Qual Health Care. 2002;14(5):353‑8.
   Web of Science ®Google Scholar
• Jenkinson C, Coulter A, Reeves R, et al. Properties of the Picker Patient Experience questionnaire in a randomized controlled trial of long versus short form survey instruments. J Public Health. 2003;25(3):197‑201.
   Google Scholar
• Fernandes S, Fond G, Zendjidjian X, et al. The Patient-Reported Experience Measure for Improving qUality of care in Mental health (PREMIUM) project in France: study protocol for the development and implementation strategy. Patient Prefer Adherence. 2019;13:165‑77.
   Web of Science ®Google Scholar
• Rendle KA, Abramson CM, Garrett SB, et al. Beyond exploratory: a tailored framework for designing and assessing qualitative health research. BMJ Open. 2019;9(8):e030123.
   PubMed Web of Science ®Google Scholar
• American Psychiatric Association. DSM-5 : diagnostic and statistical manual of mental disorders. 5th ed ed. Washington, DC: American Psychiatric Association; 2013.
   Google Scholar
• Patton M. Qualitative research and evaluation methods: integrating theory and practice. 4th ed ed. Thousand Oaks, CA: Sage Publications; 2015.
   Google Scholar
• Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408‑1416.
   Google Scholar
• Fylan F. Semi-structured interviewing. In: Miles J, Gilbert P, editors. Handbook of research methods for clinical and health psychology. Oxford: UK: Oxford University Press; 2005. p. 65‑77.
   Google Scholar
• Thomas DR. A general inductive approach for analyzing qualitative evaluation data. Am J Eval. 2006;27(2):237‑46.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77‑101.
   Google Scholar
• Welsh E. Using NVivo in the qualitative data analysis process. Forum Qual Soc Res. 2002;3(2): 26. Art.
   Google Scholar
• Reinert M. Une méthode de classification descendante hiérarchique : application à l’analyse lexicale par contexte. Les cahier de l’analyse des données. 1983;8(2): 187‑98.
   Google Scholar
• Reinert M. Alceste une méthodologie d’analyse des données textuelles et une application: Aurelia De Gerard De Nerval. Bulletin of Sociological Methodology/Bulletin De Méthodologie Sociologique. 1990;26(1):24‑54.
   Google Scholar
• Rogers HJ. Differential Item Functioning. In: Everitt BS, Howell DC, editors. Encyclopedia of statistics in behavioral science.. UK: John Wiley & Sons, Ltd: Chichester; 2005. p. 485‑90.
   Google Scholar
• Haute Autorité de Santé. Indicateurs de qualité et de sécurité des soins. Rapport des résultats nationaux de la campagne [Accessed 2020 Apr 16]. Available at: https://www.has-sante.fr/upload/docs/application/pdf/2019-12/iqss_rapport_complet_2019.pdf.
   Google Scholar
• Rodik P, Primorac J. To use or not to use: computer-assisted qualitative data analysis software usage among early-career sociologists in Croatia. Forum Qual Soc Res. 2015;16:1.
   Google Scholar
• Banner DJ, Albarrran JW. Computer-assisted qualitative data analysis software: a review.. Can J Cardiovasc Nurs. 2009;19(3):24‑31.
   Google Scholar
• Misdrahi D, Verdoux H, Lançon C, et al. The 4-Point ordinal Alliance Self-report: a self-report questionnaire for assessing therapeutic relationships in routine mental health. Compr Psychiatry. 2009;50(2):181‑5.
   Web of Science ®Google Scholar
• Llorca P-M. Partial compliance in schizophrenia and the impact on patient outcomes. Psychiatry Res. 2008;161(2):235‑47.
   Web of Science ®Google Scholar
• Sajatovic M, Biswas K, Kilbourne AK, et al. Factors associated with prospective long-term treatment adherence among individuals with bipolar disorder. Psychiatr Serv. 2008;59(7):753‑9.
   Web of Science ®Google Scholar
• Sansone RA, Sansone LA. Antidepressant adherence: are patients taking their medications? Innov Clin Neurosci. 2012;9(5‑6):41‑6.
   Google Scholar
• Fernandes S, Coldefy M, Gandré C, et al. L’offre de soins et de services en santé mentale dans les territoires. In: Coldefy M, Gandré C, editors. Atlas de la santé mentale en France. Paris, France: Institut de Recherche et Documentation en Economie de la Santé (IRDES); 2020. p. 15‑50.
   Google Scholar
• Legifrance L n° 2002–303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé; Journal officiel, n° 54 du 5 mars [Accessed 2020 Oct 1]. Available at: https://www.legifrance.gouv.fr/loda/id/JORFTEXT000000227015/2020-10-01/
   Google Scholar
• Alguera-Lara V, Dowsey MM, Ride J, et al. Shared decision making in mental health: the importance for current clinical practice. Australas Psychiatry. 2017;25(6):578‑82.
   Web of Science ®Google Scholar
• Deegan PE. The lived experience of using psychiatric medication in the recovery process and a shared decision-making program to support it.. Psychiatr Rehabil J. 2007;31(1):62‑9.
   Web of Science ®Google Scholar
• O’Neal EL, Adams JR, McHugo GJ, et al. Preferences of older and younger adults with serious mental illness for involvement in decision-making in medical and psychiatric settings.. Am J Geriatr Psychiatry. 2008;16(10):826‑33.
   Web of Science ®Google Scholar
• Fond G, Bayard S, Capdevielle D, et al. A further evaluation of decision-making under risk and under ambiguity in schizophrenia. Eur Arch Psychiatry Clin Neurosci. 2013;263(3):249‑57.
   Web of Science ®Google Scholar
• Swanson J, Swartz M, Ferron J, et al. Psychiatric advance directives among public mental health consumers in five U.S. cities: prevalence, demand, and correlates. J Am Acad Psychiatry Law. 2006;34(1):43‑57.
   Web of Science ®Google Scholar
• Adair CE, McDougall GM, Beckie A, et al. History and measurement of continuity of care in mental health services and evidence of its role in outcomes. Psychiatr Serv. 2003;54(10):1351‑6.
   Web of Science ®Google Scholar
• Swartz HA, Swanson J. Psychotherapy for Bipolar Disorder in Adults: a Review of the Evidence.. Focus (Am Psychiatr Publ). 2014;12(3):251‑66.
   Google Scholar
• Cuijpers P, van Straten A, Warmerdam L, et al. Psychotherapy versus the combination of psychotherapy and pharmacotherapy in the treatment of depression: a meta-analysis. Depress Anxiety. 2009;26(3):279‑88.
   Web of Science ®Google Scholar
• Cuijpers P, Noma H, Karyotaki E, et al. A network meta-analysis of the effects of psychotherapies, pharmacotherapies and their combination in the treatment of adult depression. World Psychiatry. 2020;19(1):92‑107.
   Web of Science ®Google Scholar
• Valencia M, Fresan A, Juárez F, et al. The beneficial effects of combining pharmacological and psychosocial treatment on remission and functional outcome in outpatients with schizophrenia. J Psychiatr Res. 2013;47(12):1886‑92.
   Web of Science ®Google Scholar
• Gaudiano BA, Miller IW. The evidence-based practice of psychotherapy: facing the challenges that lie ahead. Clin Psychol Rev. 2013;33(7):813‑24.
   Web of Science ®Google Scholar
• McHugh RK, Whitton SW, Peckham AD, et al. Patient preference for psychological vs pharmacologic treatment of psychiatric disorders: a meta-analytic review. J Clin Psychiatry. 2013;74(6):595‑602.
   Web of Science ®Google Scholar
• Emmanuelli J, Schechter F. Prise en charge coordonnée des troubles psychiques: état des lieux et conditions d’évolution. Paris: Inspection générale des affaires sociales (IGAS); 2019. Report no 2019-002R.
   Google Scholar
• Guest G, Namey E, Taylor J, et al. Comparing focus groups and individual interviews: findings from a randomized study. Int J Soc Res Methodol. 2017;20(6):693‑708.
   Google Scholar