Patients’ views on adherence to treatment in schizophrenia Paul Arteel Executive Director Global Alliance of Mental Illness Advocacy Networks – Europe
Aims and development of the survey Background
The 2012 GAMIAN-Europe survey • GAMIAN-Europe, a patient-driven pan-European organisation, represents the interests of persons affected by mental illness and provides: Advocacy Information and education Combating stigma, discrimination and exclusion Patients’ rights Cooperation, partnerships and capacity building Promoting self help and community care GAMIAN/ P. Arteel, personal communication GAMIAN, Global Alliance of Mental Illness Advocacy Networks
GAMIAN-Europe Surveys GAMIAN-Europe endeavors to capture patient views through surveys sent out through the network member associations Translated survey packs posted online on the GAMIAN website, Facebook, Twitter and LinkedIn pages Stigma (2006 Physical and Mental Health Adherence to and 2010) mental health and workplace treatment (2011) (2013) (2012)
The need to understand the patients’ perspective of adherence (2) • There are a range of patient-, treatment-, environment- and physician-related factors that contribute to partial and/or non-adherence to medication in patients with schizophrenia 1 – 3 • Understanding poor adherence from a patient perspective may help to identify ways to address adherence more effectively 1. Agid et al. Expert Opin Pharmacother 2010;11:2301 – 2317; 2. Velligan et al. J Clin Psychiatry 2009;70(Suppl 4):1 – 46; 3. Goff et al. J Clin Psychiatry 2011;72:e13
Aims of the survey • In 2012 GAMIAN-Europe conducted a survey on adherence to treatment amongst patients with schizophrenia This Hear directly from Investigate Assess patients’ patients about reasons for partial survey experiences in their real life or non-adherence different countries experiences amongst patients aimed to: • The survey results are intended to be circulated amongst National and EU policymakers • With the aim of improved integration of mental and physical healthcare for patients living with mental health disorders This project was financially supported by an educational grant from Janssen Pharmaceutica NV GAMIAN/ P. Arteel, personal communication
Development of the survey • The survey was compiled by a steering committee of patient representatives and academics: • Patients Who? • 403 How many? • 18 countries (GAMIAN website)* Where? • April – July 2012 When? • ECNP (October 2012) Poster presented at: • Questions were designed to assess patients’ experiences of: • Medication • Psychotherapy/counselling • Psychoeducation • Self-help initiatives *The survey could also be downloaded and completed copies returned by post Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria; GAMIAN/ P. Arteel, personal communication
Adherence to treatment is more than adherence to medication Multi-model care as Antipsychotic medication is adjuncts to medication to widely recommended as Psychotherapy/ first-line treatment in help alleviate symptoms Medication patients experiencing their and improve adherence, counselling first episode psychosis functioning and QoL Four cornerstones to treatment Self-help groups offer Delivery of targeted a voice with the time to information to increase Psychoeducation Self-help listen to patients’ the knowledge and concerns, their understanding of the side effects and their illness and treatment self doubt QoL, quality of life GAMIAN/ P. Arteel, personal communication
Background of respondents
Patient survey: the demographics Poland Slovenia Czech Rep Hungary Lithuania Romania Greece Italy Belgium France Netherlands Russia Turkey Israel Croatia UK Malta Demographics • 63% of respondents were male 403 responses • 64% were aged 31 – 50 years from 18 countries Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria; GAMIAN/ P. Arteel, personal communication
47% of respondents had been hospitalized five times or more Times hospitalized Patients, % Never 7 1 16 2 – 4 31 5 – 10 26 47% >10 21 Number of hospitalizations Fewer patients from WEU (38%) than EEU (47%) were hospitalized five times or more WEU, Western European Union; EEU, Eastern European Union Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria; GAMIAN/ P. Arteel, personal communication
Most respondents believe it is important to take treatment as prescribed Don’t know 26.8 Majority of respondents No Self help (n=177) 20.1 believed it is important to 53.1 Yes take treatment as prescribed 30.3 Psychoeducation (n=150) 19.4 50.3 23.4 Psychotherapy (n=205) 8.8 68,2 Responses varied according to treatment type, with 12.5 Medication (n=325) 4,86 strongest agreement on the 82.3 importance of medication 0 20 40 60 80 100 Respondents (%) Q/ I think it is important to always attend treatment exactly as prescribed by the doctor Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria
Many patients did not consider themselves well informed about treatment options 70 All WEU 60 EEU 50% of respondents Non EU thought themselves 50 Respondents (%) to be well informed 40 about possible treatment options 30 20 37% did not consider themselves well 10 informed 0 Don't know No Yes WEU, Western European Union; EEU, Eastern European Union; EU, European Union Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria; GAMIAN/ P. Arteel, personal communication Q/ Were you well informed on possible treatment options?
Fewer than 4% of patients receive the ‘best package of care’ as considered by GAMIAN-Europe All Medication, psychotherapy + self-help • 92% of respondents Medication, psychotherapy + psycho- reported receiving education antipsychotic medication Medication, psycho-education + self-help Medication + self help • 40% of respondents received medication along Medication + psycho-education with psychosocial therapy Medication + psychotherapy • 48% of respondents Only self-help received antipsychotic medication alone Only psychotherapy All Only medication 0 10 20 30 40 50 60 WEU, Western European Union; Respondents (%) EEU, Eastern European Union; EU, European Union Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria; No respondents reported receiving psychoeducation/self help; psychotherapy/self help; psychotherapy/psychoeducation; psychoeducation GAMIAN/ P. Arteel, personal communication
Reasons for not currently taking medication or having stopped medication The most commonly Lack of belief/trust/ 18,1 respect for effect of treatment specified reason for medication non- Financial reasons 7,6 adherence was side effects (31%) Dislike of treatment 12,5 Side effects 31,3 Although 42% of patients selected Lack of effectiveness 13,2 other unspecified reasons Stigma 16,7 Other 42,4 0 10 20 30 40 50 Respondents (%) Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria Patients could select more than one option
Reasons for not attending or having stopped getting psychotherapy Dislike of Lack of belief/trust/ 22,9 respect for effect of treatment treatment was the most commonly Financial reasons 22,5 specified reason for not attending Dislike of treatment 29,4 or having stopped psychotherapy Lack of effectiveness 14,2 Although 29.8% of Stigma 13,8 patients selected other unspecified Other 29,8 reasons 0 5 10 15 20 25 30 35 Respondents (%) Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria Patients could select more than one option
Reasons for not attending psychoeducation* Of patients not I do not want to be informed 30,3 involved in psychoeducation Financial reasons 22,9 embarrassment to disclose their illness and not wanting to † Information not useful 18,2 be informed were the most commonly Stigma 32,0 specified reason for not attending or having stopped Other 2,6 psychoeducation 0 5 10 15 20 25 30 35 Respondents (%) *Patients not involved in a psychoeducational programme †Information not useful for me; it was not adapted to my skills Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria Patients could select more than one option
Reasons for not attending self help* Did not know self help groups 23,7 A considerable existed proportion of No local groups 15,8 patients were not Lack of belief/trust/ 19,1 aware of self help respect for effect of treatment groups Financial reasons 6,6 Did not want to meet other 16,2 Although 27% did mental health patients not attend for Lack of effectiveness 17,0 other, unspecified reasons Stigma 16,2 Other 26,6 0 5 10 15 20 25 30 Respondents (%) *Patients who did not attend meetings of a self help group Gauci et al. Poster presented at ECNP, 13 – 17 October 2012, Vienna, Austria Patients could select more than one option
Role of patient organization
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