Tailored ehealth interventions integrated in clinical care
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1 Tailored ehealth interventions integrated in clinical care Prof. dr. Sandra van Dulmen NIVEL (Netherlands institute for health services research), Utrecht, the Netherlands Dept. of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands Dept. of Health Sciences, Buskerud University College, Drammen, Norway
2 Tailored ehealth interventions integrated in clinical care ehealth is the use of new information and ehealth is the use of new information and communication technology, in particular Internet technology, to support and enhance health and health care
3 Tailored ehealth interventions integrated in clinical care - Form, type and/or content of the ehealth intervention adapted to the profile of the patient (e.g., patient s age, disease status, needs, expectations, knowledge) - Tailored (or person-centered) is not the same as personalized ( Mr Brown or genetic makeup) or targeted (patient group)
4 Rationale for developing high quality, useful, acceptable and effective ehealth interventions Who are your end-users?
5 Rationale for developing tailored ehealth interventions Theory - e.g. the Elaboration Likelihood Model of persuasion Policy - people will process information more actively and elaborately when it is personally relevant (Petty and Cacioppo, 1986) - Person-centered healthcare Practice - Needs, health literacy, expectations, concerns, self-management skills, etc. - Building on existing knowledge
6 Tailored ehealth interventions integrated in clinical care Home Clinical ehealth Home Preparatory ehealth Sustaining ehealth
7 Tailored ehealth interventions integrated in clinical care Aims of this presentation are to provide: - Examples (5) of ehealth interventions integrated in clinical care - lessons learned for developing adherence-enhancing ehealth interventions
8 Classification of ehealth interventions User Type of user, e.g. patient or provider Technology ICT being used Care process Type of care in which ehealth is embedded user technology care process Krijgsman & Klein Wolterink. Ordening in de wereld van ehealth [Ordening in the world of ehealth]. Nictiz, 2012
9 Examples of ehealth interventions via smartphones User Patient with 1) Irritable Bowel Syndrome 2) Chronic widespread pain 3) Type 2 diabetes patient smartphone Technology - CBT/ACT with e-diaries and situational feedback via pocket computer/smartphone primary care/ home care Care process - Primary (blended) care: integration faceto-face and online contacts - Home care after rehabilitation
10 Example 1 Restructuring cognitions and behaviour in IBS through CBTbased e-diaries and situational feedback using PDA s
11 Why diary research? Ecologically valid - examines behaviour in its natural context Real-time data - no recall/retrospection bias Within person research Qs - changes over time Why not? Intrusive; device must be carried constantly Hardware and software needed Difficult to handle for some Prone to technological malfunction Why e-diary research? Control alarm cues/repetition Log file/compliance check Less missings Electronic data file Immediate, encrypted data transfer Biggest advantage: complete e-diaries any time, any place
12 Predictors of compliance with completing e-diaries* Shorter diaries Older patients Providing patients with a manual Using alarms to signal when a diary has to be completed Financial compensation *Compliance = percentage of diary entries or percentage of completed items * Morren M, van Dulmen S, Ouwerkerk J, Bensing J. Compliance with momentary pain measurement using electronic diaries: A systematic review. Eur J Pain 2009; 13:
13 RCT into effectiveness of PDA intervention* 76 IBS patients, recruted via GPs and patient organisation 37 patients in experimental PDA group 39 patients in standard care control group (reassurance, dietary advice, education) Written questionnaires at baseline (T0), 4 weeks (T1), 3 months (T2) Experimental group patients 3 daily PDA diaries for 4 weeks situational feedback in weeks 2-4 * Oerlemans S, Van Cranenburgh O, Herremans P-J, Spreeuwenberg P, Van Dulmen S. Intervening on cognitions and behaviour in irritable bowel syndrome: an RCT using PDAs. J Psychosom Res 2011; 70:
14 Situational, diary-driven feedback Hierarchical feedback protocol with topics and goals Topics 1. Cognitions, emotions and activities Goals - Avoid unnecessary worries - Do not let the complaints determine your life - Get enough physical exercise 2. Eating and drinking - General education - Understand relationship complaints-food/drinks 3. Relaxation - Understand relationship stress-complaints - Recognize and reduce stress 4. Secondary complaints - Reduce secondary complaints 5. Abdominal complaints - Reduce abdominal complaints - Feel reassured
15 Results intervention vs control group 100 Intervention group 100 Control group T0 T1 T Cognitions IBS QoL Pain catastrophizing Abdominal pain 0 Cognitions IBS QoL Pain catastrophizing Abdominal pain Only in intervention group: significant differences between T0 (baseline) and T1 (4 weeks)/t2 (3 months), except for pain
16 Conclusions Online behavioural counseling via PDAs is feasible, acceptable and effective in improving IBS-related complaints and cognitions Most improvements persist after three months But, unknown effective components/underlying mechanisms: Symptom monitoring? CBT? E-diary? Minimal contact therapy? Buddy function? How to implement such an intervention in daily life?
17 Example 2 Restructuring cognitions and behaviour in fibromyalgia through ACT-based situational feedback using smartphones RCT with patients with fibromyalgia Upon returning home after 5 weeks rehab Four-week intervention on smartphone Patient completes three e-diaries per day Situational feedback 1x per day (1 month) 1x per week (2 months)
18 RCT into effectiveness of smartphone intervention* 112 fibromyalgia patients 48 patients in intervention group 64 patients in control groep Main results Immediately post-intervention: less catastrophing (p<.001) At five months: less catastrophizing (p=.003), more acceptance of pain (p=.02), less symptoms (p=.001) * Kristjánsdóttir OB, Fors E, Eide E, Finset A, van Dulmen S, Wigers SH, Eide H. Written situational feedback via mobile phone to support self-management of chronic widespread pain: a usability study of a web based intervention. BMC Musculoskeletal Disorders 2011; 12 (1): 51 * Kristjánsdóttir OB, et al. Coaching via smartphone targeting catastrophizing in women with chronic generalized pain following an inpatient rehabilitation program - a randomized controlled trial. JMIR 2013; 15(1):e5
19 Example 3 Enhancing selfmanagement in type 2 diabetes through ACT-based situational feedback using smartphones Feasibility study with DM2 patients Twelve-week intervention Three e-diaries per day Audio with mindfulness The Few Touch application Situational feedback
20 Feasibility study in DM2* 15 DM2 patients, 11 completed the intervention Main results: Positive experience with intervention on a five-point Likert scale from 0 totally disagree to 5 totally agree Mean scores for: participation in the project 4.2 (SD = 0.5) use of mobile phone 3.3 (SD = 0.2) diaries 4.4 (SD = 0.4) feedbacks 4.0 (SD = 0.5) self-management 3.4 (SD = 0.6) * Nes A, Dulmen S van, Eide E, Finset A, Kristjánsdóttir OB, Steen IS, Eide H. The development and usability of a web-based intervention with diaries and situational feedback via smartphone to support selfmanagement in patients with diabetes type 2. Diabetes Research and Clinical Practice 2012; 3:
21 Examples of ehealth interventions via websites User 1) Breast cancer genetic counselee 2) Lymphoma cancer patient Technology - Computer-tailored website with QPS Care process - Secondary care counselee/ patient website secondary care
22 Example 1 Effects of a pre-visit, preparatory, website with question prompt sheet for counselees in breast cancer genetic counselling
23 Genetic counselling for hereditary breast cancer Analysis of family cancer history Probably a DNA test Risk estimation and advice for screening
24 Initial genetic counselling visit for cancer* Unrealistic expectations Perceived risk overestimated Little counselee participation A lot of non-tailored information is transferred * Pieterse AH, Ausems MGEM, Dulmen AM van, Beemer FA, Bensing JM.Initial cancer genetic counseling consultation: Change in counselees cognitions and anxiety, and association with addressing their needs and preferences. Am J Med Genetics 2005; 137: * Pieterse AH, Dulmen AM van, Ausems MGEM, Beemer FA, Bensing JM. Cancer genetic counseling: Communication and counselees post-visit satisfaction, cognitions, anxiety, and needs fulfillment. J Genet Couns Feb;16(1):85-96
25 Website to better prepare counselees for their counseling visits* Aims to increase: Realistic expectations website provides tailored information Participation within the consultation website prompts counselees to prepare questions on QPS * Albada A, Dulmen S van, Otten R, Bensing JM, Ausems MGEM. The development of E-info gene ca : a computer-tailored intervention prior to breast cancer genetic counselling. J Gen Couns 2009; 18:
26 Tailoring (individualized information) Text 1a age Text 1b Online questionnaire risk profile children Text 2a Text 2b Tailored text for each counselee algorithm info needs Text 2c
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29 Study procedure T0 counselee questionnaire randomisation control group usual care (n=94) Intervention group E-info gene (n=103) Incusion from: counselees Response 59% consultation videotaped T1 questionnaire
30 Online questionnaires counselees Knowledge of hereditary breast cancer Information recall Perceived risk (VAS 0-100%) Anxiety (STAI) Perceived control (PPC) Fulfilment of needs (Quote-gene ca ) Satisfaction (PSQ)
31 Videotapes of consultations Coded with RIAS (Roter Interaction Analysis System) One code for each utterance (sentence) Instrumental utterances (e.g. give info or advice, ask questions) Affective utterances (e.g. reassurance, empathy)
32 Results* Website visits Number of page views - Mean visited pages 11 (sd 8) out of 19 Duration of site visit - Mean 21:05 min (sd 19:53 min) * Albada A, et al. Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counseling. Journal of Cancer Education 2011; 4:
33 QPS use 42% of counselees used QPS (mean 3 questions) - Higher educated counselees used QPS more often (p=.03) - Counselees who viewed the page How to communicate with your counselor, more often used the QPS (47% vs 17%, p=.02) Counselees knowledge and expectations - More accurate breast cancer knowledge after having viewed the website (p=.00) - More realistic expectations of the first visit (p=.04) Albada A, et al. Breast cancer genetic counselling referrals and counselees knowledge, risk perception, worry and information needs in the UK and the Netherlands: How comparable are the research findings between different countries? J Comm Genetics 2011; 2:
34 Example 2 Effects of a pre-visit online communication training for patients with malignant lymphoma on participation during follow-up consultations
35 Communication training for patients with lymphoma cancer: PatientTIME Health care visits: 1-4 times a year (many wait-and-sees ) Patients feel overwhelmed and anxious before/during follow-up visits They want a tool to increase their control and participation
36 Communication training for patients with malignant lymphoma: PatientTIME PatientTIME (Time In Medical Encounters) is a computertailored online training program with 110 video-recorded fragments of simulated health care visits (best practices)
37 Patient participatory study 1. Project start up 2. Intervention development Patient involvement Patient involvement 3. RCT Patient involvement 4. Implementation Patient involvement Iterative user-centered development process; intervention mapping
38 Communication training for patients with malignant lymphoma: PatientTIME After completing the 10-item PEPPI* online before each visit, patients get to see several videotaped best practices prioritized on the basis of self-perceived communication barriers, worries and disease status: MODELING After seeing the fragments, patients are asked to indicate their intended communication * Perceived Efficacy in Patient Physician Encounters
39 Communication training for patients with malignant lymphoma Input on how to cope with communication barriers from focus groups and interviews with patients, examples: - Expressing emotions - Asking for repetition - Interrupting the HCP - Asking for a second opinion - Disagreeing with the HCP Bruinessen IR van, Weel-Baumgarten EW van, Gouw H, Zijlstra JM, Albada A, Dulmen S van. Barriers and facilitators in effective communication experienced by patients with lymphoma cancer at all stages after diagnosis. Psychooncology 2013 (in press)
40 Randomized Controlled Trial Started Summer 2013; now 50/160 patients included RCT Set up Intervention Intervention Control group I group II group - Follow patients for 3 consultations (hospital control visits) - Invite them to visit PatientTIME before each consultation - Online questionnaires at baseline, after each consultation and 3 months after - Audiotape the consultations (patients can upload recordings on their webpage; researchers analyse these on actual participation)
41 Randomized Controlled Trial RCT Intervention Intervention Control group I group II group Access to PatientTIME Access to PatientTIME + Audio recording consultations
42 Add screenshot 5 diaries Add screenshot reflection Add screenshot consultation Add screenshot question 1. Study overview 2. Development 3. RCT 4. Implementation 5. Discussion
43 Add screenshot 5 diaries Add screenshot reflection Add screenshot consultation Add screenshot question 1. Study overview 2. Development 3. RCT 4. Implementation 5. Discussion
44 Add screenshot 5 diaries Add screenshot reflection Add screenshot consultation Add screenshot question 1. Study overview 2. Development 3. RCT 4. Implementation 5. Discussion
45 Add screenshot 5 diaries Add screenshot reflection Add screenshot consultation Add screenshot question 1. Study overview 2. Development 3. RCT 4. Implementation 5. Discussion
46 Add screenshot 5 diaries Add screenshot reflection Add screenshot consultation Add screenshot question 1. Study overview 2. Development 3. RCT 4. Implementation 5. Discussion
47 ehealth: what is important to do next? Intervention checks, usability tests, eye-tracking, psychophysiological stress response Experimental studies - Online vs written info on recall, arousal, health care utilization and adherence What (ehealth) intervention for what patient? health literacy assertiveness desired level of involvement information preference selfmanagement skills motivation, etc. Can a screeningstool help?
48 SeMaS (Self Management Screening)* Much influence on own health Not able to self-monitor Depending on others Not many computer skills High burden of disease A screeningsinstrument with 26 questions in 10 domains; Patient and provider together discuss the resulting patient profile * Eikelenboom et al. Implementation of personal self-management support using the self-management screening questionnaire SeMaS; a study protocol for a cluster randomized trial. Trials 2013; 14:336
49 Lessons learned for adherenceenhancing ehealth interventions - Patient supporting interventions - A need for developing specific types of interventions to support patients, such as inperson coaching, interactive computer programs, videos of role models and question prompt sheets (Epstein & Street, 2007) - Effective ehealth adherence interventions - Those that influence the very act of taking medication; RTMM (Real Time Medication Monitoring) via electronic reminding (Vervloet, 2013) - ehealth interventions seem promising, due to low-quality adherence measurements (Linn et al, 2011) - (Effective) ingredients in presented studies transferable to adherence interventions: - E-Diaries/QPS and situational feedback: monitor symptoms, medication beliefs and behaviour during different everyday circumstances followed by daily feedback - Modeling: show (video-recorded) best practices for discussing adherence or for taking medication - Tailor intervention to patient s profile, using algorithms - Develop ehealth adherence interventions in a stakeholder/user demand-driven instead of a supply-driven way
50 For more information:
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