E-mental health for eating disorders Proud2Bme and Featback Eric F. van Furth, PhD, FAED Clinical Director, Center for Eating Disorders Ursula, Leidschendam, the Netherlands Professor of Eating Disorders, Department of Psychiatry, Leiden University Medical Center Mail: e.vanfurth@rivierduinen.nl 1
The script Setting the stage The model E-communities Early detection and e-mental health Proud2Bme Featback 2
Why we need to expand our reach SETTING THE STAGE 3
Barriers to help seeking (1) Lack of knowledge about the illness Lack of knowledge about treatment Shame, fear of stigmatization More than 50% of people with an ED never receive treatment 5 years on average between onset of illness and professional help (de la Rie et al., 2006) Average duration of illness of AN is 5-7 years (Strober et al., 1997) 4
Barriers to help seeking (2) Drop-out from treatment for AN: 20% first inpatient treatment, 30-50% following inpatient treatment 31-64% in specialized outpatient treatment Relapse in first year following inpatient treatment for AN 30-50% (Pike et al. 1998) Service availability is limited in many countries (where can I get help?) Service accessibility is limited in many countries (waiting lists, demands) Service affordability/ insurance reimbursement is limited in many countries 5
Aim of any service provision model should be. To improve early detection, early diagnosis, fast track individuals to fitting care To increase the number of individuals with a lasting recovery.. To improve the care for individuals with a chronic illness. To provide appropriate (cost) effective care. 6
How we can expand our reach THE MODEL. 7
Disease management http://www.dmaa.org/dm_definition.asp (accessed 9/13/2010) Disease management is a system of coordinated health care interventions and communications for populations with conditions in which patient self-care efforts are significant. 8
Paradigm shift Traditional health care organization Passively waits for patients to be referred for treatment Discharge after treatment is completed Disease management organization How can we contribute to the care of people with an eating disorder in the community? Delivering and coordinating appropriate costeffective care 9
Main differences traditional care and disease management model Traditional Reactive Aimed at treatment Optimize specific treatment process Disease management Proactive Aimed at prevention and treatment Optimize total care pathway Finance for institution Improvement based on outcome own treatment process Based on mono-disciplinary, institutional guidelines Finance for illness/disorder Improvement based on outcome complete care pathway Based on integrated multi-disciplinary care protocols or critical paths Treatment program is responsible Patient system is responsable Aimed at illness episode Aimed at natural course of illness Passive role patient Process central Intense involvement patient Outcome central 10
Disease management on 3 levels Meeuwissen, 2007 DM principles Therapist Client Institution Regional/State Coordination and Don t treat episode, offer Manage the chain of Supra regional integration treatment care across course of care in stepped care collaboration, process illness/recovery Role Professional org. Evidence based guidelines Work according to Check ED program Implementation of standard of care, against guideline, guideline management of results management of results recommendations Recognize worsening in Relapse prevention, Organize outreach, Shared view on population utilize consumer group yearly assessement chronicity participation Active role client Utilize consumer group Client council, shared Standard care program, participation, vision on treatment Patient organization as Self management member of Prof org, Client panel Monitor, evaluate, Assess effectiveness Assess effectiveness, Benchmarking? management of results Quality control Feedback Evaluate individual care Client satisfaction, Benchmarking? plan, Assess effectiveness Assess effectiveness 11
Stepped Care Disease Management Model Prevention Inpatient Tx Day Tx Outpatient Tx Proud2Bme Featback Respite House Support group Expert patient/peer support Pnurs. Parent chat Individuals with an eating disorder and their families in the community 12
Teens on the web E-COMMUNITIES 13
What do teens/adolescents do on the web? 96% young people have gone online 50% seek health information online Many change behavior as a result 50% are looking for ways to lose weight 25% seek information about eating disorders (Rideout et al 2002, Brodie et al 2000) 14
The challenge in the US (USA Today, October 12, 2011) US broadband adoption is only 68%! 20 million do not have access to broadband 80 million who do, choose not to: too costly (36%) lack of digital skills (22%) don t think it s relevant (19%) other, like get it at work (23%)
E-communities - definition A social network of individuals who interact through specific media, potentially crossing geographical and political boundaries in order to pursue mutual interests or goals. 16
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E-communities (1) 18
E-communities (2)
The internet can be a dangerous place! Pro-anorexia and bulimia Web sites 470% Pages associated with violent content 125% Web sites promoting racism 70% Pro-drug Web sites 62% Content related to child pornography 18%. Optenet, media release September 23, 2008.
Google hits per year pro ana, pro mia, thinspo 3,000,000 2,500,000 2,000,000 1,500,000 N 1,000,000 500,000 0 1995 2000 2005 2006 2007 2008 2009 2010 2011
These websites are perceived as supportive by users, but appear to instead initiate, exacerbate, or maintain users eating disorder symptoms.
Disadvantages of e-communities Pro-ED (ana and mia) Cyber bullying Grooming and exploitation Pornography Management of forum and chats: Staffing issues Funding Effectiveness Unmet needs Men, parents 23
Advantages of e-communities Confidential Anonymous Technically proficient Congruent with lifestyle 24
Expanding our reach EARLY DETECTION AND E-MENTAL HEALTH 25
Respite house Living room: a safe place Expert patient led Self-help groups Shop together Cook together Meet others with an ED For parents too Linked with specialized ED programs Prevent inpatient Tx (step up) Shorten inpatient Tx (step down) 26
Proud2Bme via Google translate into English In Hebrew Proud2Bme video clip Proud twitter Proud Hyves page Proud Facebook page 27
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Stats Proud2Bme.nl Past 3 years: 5.6 million visitors from 163 countries Unique visitors: 1.800.000 Page views: 52 million Mean page views: 9.6 Time on site: 7:55 minutes 20+ page views: 11.9% Past month (january 2013): Visits: 262.000 Unique visitors: 126.000 Daily7.000-11.000 visits 31
Poll May 2011 (n = 1,200) 75%: Proud good alternative for pro-ana sites 40%: Proud is only form of help Of those visiting pro-ana: 60% visited less or stopped 32
Featback Webbased prevention program Webbased or phone-based selfmonitoring program With feedback and alarm messages (Bauer et al., 2009; Lindenberg et al., 2011) 34
Featback F2F Tx - Intensity - Cost Consultation Chat Monitoring & Feedback Psychoeducation & Peer Support Screening 35
Featback 8 questions assessing 4 dimensions: Body dissatisfaction e.g. How satisfied have you felt in your body over the past seven days? 1 very satisfied; 4very dissatisfied Overconcern with weight and shape e.g. Has your eating behaviour/your weight/your shape had a negative impact on your quality of life over the past seven days? 1 definitely no; 4 definitely yes Unbalanced nutrition and dieting e.g. On how many days over the past week have you eaten in a balanced way? 1 every day; 4 never Binge eating and compensatory behaviors e.g. On how many days over the past week have you used one or several of the following means due to a fear of gaining weight: laxatives, vomiting, excessive exercising? 1 never; 4 daily 36
Featback (cont.) Each time a participant completes the monitoring questionnaire, the program automatically determines the pattern of change out of these 256 possibilities (4x4x4x4). Then, one feedback text is selected by chance out of the pool of 10 to 15 pre-formulated statements for this specific type. Alarm messages to therapist 37
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Why Featback? Easy access Reach many individuals Able to monitor large number of individuals Create awareness (decrease patient delay) Prevention Increase accessibility of care (step up) Add-on to treatment Relapse prevention Offers continuity during recovery/illness period 39