Closer to real life: Using experience sampling method (ESM) in health care research

Transcription

1 PIHET, Sandrine EICHER, Manuela Closer to real life: Using experience sampling method (ESM) in health care research SCHP BERNE

2 OVERVIEW 1. What is ESM? 2. Domains of application & examples of ESM studies in health care 3. Example: Towards an application of ESM in acute cancer care 4. Brainstorming: possible use of ESM by participants 5. Methodological and ethical challenges in ESM 6. Technical solutions: example of IT use to support ESM 7. Participants feed-back on challenges and IT use in ESM

3 PIHET, Sandrine 1. Closer to real life but what is ESM? SCHP BERNE

4 IN REAL LIFE AND REAL TIME ESM study people in their natural environment, as they go about their usual activities (real life). In ESM, participants provide repeated real-time (or close-in-time) reports about their experience, behaviour, etc. as it naturally unfolds in its context.

5 THE ESM «FAMILY» Experience Sampling Methods (ESM) Ecological Momentary Assessment Real-time data capture, microlongitudinal design Ambulatory assessment Self-monitoring e-diary studies

6 WHAT IS ESM BEST SUITED FOR? Rare and private behaviors Subjective experience Context, time & intervention effects Processes

7 ESM VARIANTS (1) bip bip bip bip bip bip Time sampling or Event sampling Ongoing experiences (pain, stress, well-being, symptom intensity, HR ) High-frequency and/or low saillance events (tremor, nails biting ) Discrete events (taking medication, seizure, fall, headache, substance use, receiving support, using a specific strategy )

8 ESM VARIANTS (2) or Paper-pencil Computerized Easy and quick conception Easy use Reponses can be readily accessed Flexible presentation Compliance can be controlled No access to previous answers Easy data transfer

9 ESM VARIANTS (3) Frequency High - rapid changes / frequent event Low - slow changes / rare event Time frame Short - minimizes retrospection bias Long - covers the stream of experience Duration Short - frequent event Long - rare event

10 ADVANTAGES OF ESM Less recall bias than in one-point self-reports More accurate than external assessment Maximizes the ecological validity Captures the interactions with the context Captures the natural time course Unconscious processes may be explicit in data [Myin-Germeys et al., 2009; Trull & Ebner-Priemer, 2013; Pihet, 2014]

11 PIHET, Sandrine EICHER, Manuela 2. Examples of ESM studies in health care research SCHP BERNE

12 OVERVIEW Health care practitioners experience in daily life Stress / «Flow» / Work-family balance Patient / natural helpers experience in daily life Symptoms / treatment consequences / management Processes Temporal patterns of treatment consequences Individual high-risk situations Patients at high risk for suboptimal evolution Processes leading to non-adherence Effect of light on infants circadian rythm Efficacy of interventions

13 PIHET, Sandrine 2.1. ESM studies about the experience and behaviour of health care practitioners SCHP BERNE

14 EXPERIENCE / BEHAVIOR OF HCP

15 EXPERIENCE / BEHAVIOR OF HCP What are the core activities of nurses, and the conditions under which they are performed?

16 EXPERIENCE / BEHAVIOR OF HCP

17 EXPERIENCE / BEHAVIOR OF HCP What contributes the most to nurses stress?

18 EXPERIENCE / BEHAVIOR OF HCP How much flow do nurses experience during work, and when?

19 EXPERIENCE / BEHAVIOR OF HCP And how much flow do students experience?

20 EXPERIENCE / BEHAVIOR OF HCP How do nurses experience the work-family balance?

21 PIHET, Sandrine 2.2. ESM studies about the experience of patients and natural helpers SCHP BERNE

22 EXPERIENCE OF PATIENTS Do patients with schizophrenia really experience «flat affect»?

23 EXPERIENCE OF NATURAL HELPERS How much stressed are dementia caregivers?

24 EXPERIENCE OF PATIENTS Which treatment consequences do patients experience, and how do they manage them?

25 PIHET, Sandrine 2.3. ESM studies about processes SCHP BERNE

26 PROCESSES When do patients experience the strongest treatment consequences?

27 PROCESSES What are the high-risk situations for a specific patient?

28 PROCESSES Which patients are at high-risk for suboptimal evolution?

29 PROCESSES Which processes lead to non-adherence?

30 PROCESSES Does light exposure affect the circadian rythm of infants?

31 PIHET, Sandrine 2.4. ESM studies about the efficacy of intervention SCHP BERNE

32 EFFICACY OF INTERVENTIONS Can Nemexin help reduce problematic alcohol use? A RCT

33 EFFICACY OF INTERVENTIONS Can Nemexin help reduce problematic alcohol use? A RCT

34 EICHER, Manuela 3. Example: Towards and application of ESM in acute cancer care SCHP BERNE

35 EXAMPLE: EU-PROJECT ASYMS

36 EXAMPLE: RESIL-TRIAL

37 RESIL-SHEET: FEED-BACK RESILIENZ

38 RESIL-SHEET: PROTOTYP

39 4. Brainstorming: possible use of ESM

40 PIHET, Sandrine 5. Methodological challenges in ESM studies SCHP BERNE

41 METHODOLOGICAL CHALLENGES OF ESM Demanding for the participants Risk of reactivity Compliance is required [Myin-Germeys et al., 2009; Trull & Ebner-Priemer, 2013; Pihet, 2014]

42 REACTIVITY IN ESM Can the participation in an ESM protocol modify the variables of interest? In most cases it won t. Should be documented/assessed. May occur when 1) only one target outcome is measured, 2) it is associated with a high motivation to change, and 3) changes are reinforced. [Barta, Tennen & Litt, 2012]

43 COMPLIANCE IN ESM An average of ±80% is required. To ensure representativity of the measures. Some statistical methods (multilevel) integrate this information. Can be achieved through thoughtful choice of the ESM strategy (participant burden) and pilot work in the specific population. [Myin-Germeys et al., 2009]

44 EICHER, Manuela 5. Ethical challenges in ESM studies SCHP BERNE

45 INFORMED CONSENT: ANTICIPATE INFORMATION NEED ESM could be experienced as potentially voyeuristic / intrusive, therefore participants need information: What specific data are being collected What data will be used for How data will be protected and not linked to individuals Discuss the limits of confidentiality [Trull, T. & Ebner-Priemer, U. (2013): Ambulatory Assessment. Annu. Rev. Clin. Psychol 9: ]

46 PRIVACY Possible ways to support privacy: Use password-protected devices and protocols Use data-encryption and secure server to house data More complex issues that need individual preparation: How disclose data collected passively (e.g. through body sensors) if health problems are implicated? How prevent risk exposure in case an acute crisis (suicidality)or emergency (stroke) happens? How to protect data that might indicate illegal activity (under age drinking; illegal substance abuse)? [Trull, T. & Ebner-Priemer, U. (2013): Ambulatory Assessment. Annu. Rev. Clin. Psychol 9: ]

47 CARRINO, Francesco 6. RESIL TRIAL a technical perspective SCHP BERNE

48 SOME INTRODUCTIONS Francesco Carrino, PhD student Physiological signals Human-Computer Interaction University of Applied Science, Fribourg HumanTech institute Advanced Interfaces and Smart Spaces Data Science, Content Technologies and Bioinformatics Well-being 12/03/14 48

49 OUTLINE RESIL Project Motivations Goals (technical POV) Our proposition System architecture Application overview: Video demonstration Conclusion Q&A + Live Demonstration 12/03/14 Francesco Carrino - PhD Student 49

50 RESIL TRIAL: MOTIVATIONS RESIL Study The aim of the study is to test by feasibility and efficacy of two interventions with different intensities of support to enhance resilience in patients and thereby to reduce their unmet supportive care needs Technical motivations: Provide technological support during the trials Helping in collecting data Easy data transfer 12/03/14 Francesco Carrino - PhD Student 50

51 RESIL TRIAL: GOALS Goals: Interface: Adapted to elderly people Users in stress conditions Independent from the technology ios, Android, PC, Mac, Linux Respectful of the paper version Secure Anonymous Personal data treatment Possibility of exporting data in a friendly format 12/03/14 Francesco Carrino - PhD Student 51

52 RESIL TRIAL: OUR PROPOSITION System architecture An authenticated user accedes to a web application running in a server (somewhere) with behind a database storing the information All the communications are encrypted and secured The devices are secured Here come the problems! 52

53 RESIL TRIAL: OUR PROPOSITION System architecture Need to integrate the new application in an existing system Usually the system is very constrained (for security reason) Usually the system is old! (also for security reason) Therefore: we need to adapt the new system to the existing infrastructure Moral of the story: Nothing is impossible but everything is time consuming! 53

54 RESIL TRIAL: OUR PROPOSITION Homepage (only for the nurses eyes): 12/03/14 Francesco Carrino - PhD Student 54

55 RESIL TRIAL: OUR PROPOSITION Patients Manager (only for the nurses eyes): 12/03/14 Francesco Carrino - PhD Student 55

56 RESIL TRIAL: OUR PROPOSITION Survey (tablet in the patient hand): 12/03/14 Francesco Carrino - PhD Student 56

57 RESIL TRIAL: OUR PROPOSITION Monitoring Sheet: 12/03/14 Francesco Carrino - PhD Student 57

58 RESIL TRIAL: OUR PROPOSITION DEMO 12/03/14 Francesco Carrino - PhD Student 58

59 RESIL TRIAL: CONCLUSION Conclusions New technologies can help researchers to run ESM studies providing new tools and approaches People (i.e., therapists & patients) have more and more the habit to use new technologies. Contacts: Tel number: Personal web site: Video demonstration: 59

60 Merci de votre attention! Haute école de santé Fribourg Hochschule für Gesundheit Freiburg Rte des Cliniques 15, 1700 Fribourg/Freiburg Tél