Advertisement

Springer Nature is making SARS-CoV-2 and COVID-19 research free. View research | View latest news | Sign up for updates

Desire for information of people with severe mental illness

Abstract

Purpose

To assess (1) the desire of people with severe mental illness for information on their treatment and (2) whether the desire for information is associated with socio-demographic variables, diagnosis, illness duration, therapeutic relationship, needs and symptom severity.

Methods

588 outpatients with severe mental illness were recruited in six European countries (Germany, Denmark, Hungary, Italy, Switzerland, United Kingdom) during the “Clinical decision making and outcome in routine care of people with severe mental illness (CEDAR)” study (ISRCTN75841675). Desire for information was assessed by the Information subscale of the Clinical Decision Making Style Scale. Study participants with high desire for information were compared with those with moderate or low desire for information.

Results

80 % of study participants (n = 462) wanted to receive information on all aspects of their treatment (management, prognosis, alternative options for care). Participants with a high desire for information had less severe symptoms (OR = 0.988, CI = 0.977–1.000) and a better self-rated therapeutic alliance (OR = 1.304, CI = 1.130–1.508) with their clinician.

Conclusions

Most, but not all, people with severe mental illness have a high desire for information. Desire for information is associated with variables, such as therapeutic relationship and symptom severity, which are amenable to change during treatment.

This is a preview of subscription content, log in to check access.

References

  1. 1.

    Lambert MJ, Hansen NB, Finch AE (2001) Patient-focused research: using patient outcome data to enhance treatment effects. J Consult Clin Psychol 69:159–172

  2. 2.

    Salvador-Carulla L, Mezzich JE (2012) Person-centred medicine and mental health. Epidemiol Psychiatr Sci 21:131–137

  3. 3.

    Bunn MH, O’Connor AM, Tansey MS, Jones BD, Stinson LE (1997) Characteristics of clients with schizophrenia who express certainty or uncertainty about continuing treatment with depot neuroleptic medication. Arch Psychiatr Nurs 11:238–248

  4. 4.

    Dwight-Johnson M, Unutzer J, Sherbourne C, Tang L, Wells KB (2001) Can quality improvement programs for depression in primary care address patient preferences for treatment? Med Care 39:934–944

  5. 5.

    Rokke PD, Tomhave JA, Jocic Z (1999) The role of client choice and target selection in self-management therapy for depression in older adults. Psychol Aging 14:155–169

  6. 6.

    Falzer R, Garman DR (2012) Optimizing clozapine through clinical decision making. Acta Psychiat Scand 126:47–58

  7. 7.

    Nivoli AM, Pacchiarotti I, Rosa AR, Popovic D, Murru A, Valenti M et al (2012) Rates and clinical correlates of treatment non-adherence in schizoaffective bipolar patients. Acta Psychiat Scand 125:412–418

  8. 8.

    Cavelti M, Kvrgic S, Beck EM, Kossowsky J, Vauth R (2012) Assessing recovery from schizophrenia as an individual process. A review of self-report instruments. Eur Psychiatry 27:19–32

  9. 9.

    Mendel R, Hamann J, Traut-Mattausch E, Jonas E, Heres S, Frey D et al (2009) How psychiatrists inform themselves and their patients about risks and benefits of antipsychotic treatment. Acta Psychiat Scand 120:112–119

  10. 10.

    Department of Health (2010) Equity and Excellence: Liberating the NHS. The Stationary Office Ltd, London, United Kingdom

  11. 11.

    Asghari F, Mirzazadeh A, Fotouhi A (2008) Patients’ preferences for receiving clinical information and participating in decision-making in Iran. J Med Ethics 34:348–352

  12. 12.

    Back AL, Arnold RM (2006) Discussing prognosis: “how much do you want to know?” Talking to patients who do not want information or are ambivalent. J Clin Oncol 24:4214–4217

  13. 13.

    Benbassat J, Pilpel D, Tidhar M (1998) Patients’ preferences for participation in clinical decision making: a review of published surveys. Behav Med 24:81–88

  14. 14.

    Ende J, Kazis L, Ash A, Moskowitz MA (1989) Measuring patients’ desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med 4:23–30

  15. 15.

    Laugharne R, Priebe S (2006) Trust, choice and power in mental health. Soc Psychiatry Psychiatr Epidemiol 41:843–852

  16. 16.

    Pescosolido BA, Brooks Gardner C, Lubell KM (1998) How people get into mental health services: stories of choice, coercion and “muddling through” from “first-timers”. Soc Sci Med 46:275–286

  17. 17.

    Mueser KT, Bellack AS, Wade JH, Sayers SL, Rosenthal CK (1992) An assessment of the educational needs of chronic psychiatric patients and their relatives. Br J Psychiatry 160:674–680

  18. 18.

    Chien WT, Kam CW, Lee IF (2001) An assessment of the patients’ needs in mental health education. J Adv Nurs 34:304–311

  19. 19.

    Zwaenepoel L, Bilo R, De Boever W, De Vos M, Reyntens J, Hoorens V et al (2005) Desire for information about drugs: a survey of the need for information in psychiatric in-patients. Pharm World Sci 27:47–53

  20. 20.

    Hallett C, Gupta S, Priebe S (2013) What do outpatients with schizophrenia and mood disorders want to learn about their illness? Psychiatr Serv. doi:10.1176/appi.ps.201200382

  21. 21.

    Puschner B, Steffen S, Slade M, Kaliniecka H, Maj M, Fiorillo A et al (2010) Clinical decision making and outcome in routine care for people with severe mental illness (CEDAR): study protocol. BMC Psychiatry 10:90

  22. 22.

    First MB, Spitzer RL, Gibbon M, Williams JBW (1997) Structured clinical interviews for DSM-IV axis I disorders—clinical version (SCID-CV). American Psychiatric Press, Washington, D.C.

  23. 23.

    Slade M, Powell R, Rosen A, Strathdee G (2000) Threshold Assessment Grid (TAG): the development of a valid and brief scale to assess the severity of mental illness. Soc Psychiatr Psychiat Epidemiol 35:78–85

  24. 24.

    Slade M, Cahill S, Kelsey W, Powell R, Strathdee G, Valiakalayil A (2001) Threshold 3: the feasibility of the threshold assessment grid (TAG) for routine assessment of the severity of mental health problems. Soc Psychiatry Psychiatr Epidemiol 36:516–521

  25. 25.

    Wild D, Grove A, Martin M, Eremenco S, Mcelroy S, Verjee-Lorenz A, Erikson P (2005) Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health 8:94–104

  26. 26.

    Puschner B, Neumann P, Jordan H, Slade M, Fiorillo A, Giacco D et al (2013) Development and psychometric properties of a five-language multiperspective instrument to assess clinical decision making style in the treatment of people with severe mental illness (CDMS). BMC Psychiatry 13:48

  27. 27.

    Lambert MJ, Burlingame GM, Umphress V, Hansen NB, Vermeersch DA, Clouse GC et al (1996) The reliability and validity of the outcome questionnaire. Clin Psychol Psychother 3:106–116

  28. 28.

    Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, Wykes T et al (1995) The Camberwell Assessment of Need the validity and reliability of an instrument to assess the needs of people with severe mental illness. Br J Psychiatry 167:189–195

  29. 29.

    Slade M, Leese M, Cahill S, Thornicroft G, Kuipers E (2005) Patient-rated mental health needs and quality of life improvement. Br J Psychiatry 187:256–261

  30. 30.

    Junghan U, Leese M, Priebe S, Slade M (2007) Staff and patient perspectives on unmet need and therapeutic alliance in community services. Br J Psychiatry 191:543–547

  31. 31.

    Priebe S, Gruyters T (1993) The role of the helping alliance in psychiatric community care. A prospective study. J Nerv Ment Dis 181:552–557

  32. 32.

    Chisholm D, Knapp MR, Knudsen HC, Amaddeo F, Gaite L, van Wijngaarden B (2000) Client Socio-demographic and Service Receipt Inventory—European version. Br J Psychiatry 177:28–33

  33. 33.

    Fried TR, Bradley EH, O’ Leary J (2003) Prognosis communication in serious illness: perceptions of older patients, caregivers and clinicians. J Am Geriatr Soc 51:1398–1403

  34. 34.

    Jenkins V, Fallowfield L, Poole K (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:322–331

  35. 35.

    Simmons MB, Hetrick SE, Jorm AF (2011) Experiences of treatment decision making for young people diagnosed with depressive disorders: a qualitative study in primary care and specialist mental health settings. BMC Psychiatry 11:194

  36. 36.

    Lysaker PH, Davis LW, Buck KD, Outcalt S, Ringer JM (2011) Negative symptoms and poor insight as predictors of the similarity between client and therapist ratings of therapeutic alliance in cognitive behavior therapy for patients with schizophrenia. J Nerv Ment Dis 199:191–195

  37. 37.

    Ruissen AM, Widdershoven GAM, Meynen G, Abma TA, Van Balkom AJLM (2012) A systematic review of the literature about competence and poor insight. Acta Psychiat Scand 125:103–113

  38. 38.

    Wills CE, Holmes-Rovner M (2006) Integrating decision making and mental health interventions research: research directions. Clin Psychol 13:9–25

  39. 39.

    Priebe S, Dimic S, Wildgrube C, Jankovic J, Cushing A, Mccabe R (2011) Good communication in psychiatry—a conceptual review. Eur Psychiatry 26:403–407

Download references

Acknowledgments

The CEDAR study is funded by a grant from the European Union’ Seventh Framework Programme (Programme Acronym: FP7-HEALTH; Subprogramme area: Improving clinical decision making; Project Reference: 223290).

Conflict of interest

The authors declare that they have no competing interests.

Author information

Correspondence to Domenico Giacco.

Appendix: the CEDAR study group

Appendix: the CEDAR study group

The study “Clinical decision making and outcome in routine care for people with severe mental illness” (CEDAR) is a multicentre collaboration between the Department of Psychiatry II at Ulm University, Germany (Bernd Puschner); the Section of Recovery at Institute of Psychiatry, London, U.K. (Mike Slade); the Department of Psychiatry at Second University of Naples, Italy (Mario Maj); the Department of Psychiatry at Debrecen University, Hungary (Anikó Égerházi); the Unit for Psychiatric Research at Aalborg Psychiatric Hospital, Denmark (Povl Munk-Jørgensen); and the Department of General and Social Psychiatry at University of Zurich, Switzerland (Wulf Rössler).

The CEDAR study group includes the following members: Bernd Puschner (chief investigator), Thomas Becker, Katrin Arnold, Esra Ay, Jana Konrad, Sabine Loos, Petra Neumann, Nadja Zentner (Ulm); Mike Slade, Elly Clarke, Harriet Jordan (London); Mario Maj, Andrea Fiorillo, Valeria Del Vecchio, Corrado De Rosa, Domenico Giacco, Mario Luciano, Gaia Sampogna, Pasquale Cozzolino, Heide Gret Del Vecchio, Antonio Salzano (Naples); Anikó Égerházi, Tibor Ivánka, Marietta Nagy, Roland Berecz, Teodóra Glaub, Ágnes Süveges, Attila Kovacs, Erzsebet Magyar (Debrecen); Povl Munk-Jørgensen, Malene Frøkjaer Krogsgaard Bording, Helle Østermark Sørensen, Jens-Ivar Larsen (Aalborg); Wolfram Kawohl, Arlette Bär, Wulf Rössler, Susanne Krömer, Jochen Mutschler, Caitriona Obermann (Zurich).

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Giacco, D., Luciano, M., Del Vecchio, V. et al. Desire for information of people with severe mental illness. Soc Psychiatry Psychiatr Epidemiol 49, 1883–1891 (2014). https://doi.org/10.1007/s00127-014-0901-5

Download citation

Keywords

  • Severe mental illness
  • Desire for information
  • Clinical decision making
  • Therapeutic alliance