LIVING WITH AND IMPLANTABLE CARDIOVERTER- DEFIBRILLATOR; IT S MORE THAN A SHOCK Perceived control and quality of life

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1 LIVING WITH AND IMPLANTABLE CARDIOVERTER- DEFIBRILLATOR; IT S MORE THAN A SHOCK Perceived control and quality of life BENGT FRIDLUND, RNT PHD FESC PROFESSOR, DIRECTOR JÖNKÖPING UNIVERSITY, SWEDEN BENGT.FRIDLUND@HHJ.HJ.SE

2 OBJECTIVE To identify the patient-centered outcomes in patients having an ICD - in terms of QoL and perceived self-control, i.e. what do the psychosocial interventions look like and give with regard to programmes, instruments and effects

3 QUALITY OF LIFE is used in healthcare to refer to subjects emotional, social and physical wellbeing, including the ability to function in the ordinary living Health-Related Quality of Life (HRQoL) is a term frequently used in the context of medicine and healthcare, where the impact of a disease may reduce health HRQoL acknowledges that subjects put their actual situation in relation to their individual expectation. The latter can vary over time, and react to external influences like family support etc. health is a resource for every day life, not the objective of living, i.e. a positive concept emphasizing social and personal resources as well as capacities usually assessed by questionnaires - multidimensional and cover physical, social, emotional, cognitive, work- or role-related, and possibly spiritual aspects as well as a wide variety of disease related symptoms

4 PERCEIVED/SELF-CONTROL is the ability to control one s emotions, behavior and desires in order to efficiently manage the future is the belief that one can determine one s own internal states and behavior, influence one s environment, and/or bring about desired outcomes is used to refer to the many processes used to manage drives and emotions is correlated with various positive life outcomes, such as happiness, adjustment and various positive psychosocial factors in generic sense also self-regulation, willpower, locus of control, self-efficacy, mastery, coping (e.g. Shapiro 1983; Vohs et al 2008) usually assessed by questionnaires and interviews

5 DIRECTION ICDs in the early 1980s multiple trials have demonstrated the efficacy of ICD for the prevention of SCD (Vijgen et al 2009) The established efficacy and cost effectiveness of the ICD in preventing SCD allows for an increased focus on patient factors and psychosocial outcomes (Stutis et al 2007)

DIRECTION Patient-centered care Focuses predominantly on patient s physical and emotional needs, and maintaining or improving QoL while giving the patient far

6 DIRECTION Patient-centered care Focuses predominantly on patient s physical and emotional needs, and maintaining or improving QoL while giving the patient far greater locus of control in medical decision making (Hlatky, Mark 2007) Patient-centered outcomes Symptom burden Functional limitation QoL (Krumholz et al 2005)

7 ICD & PATIENT-CENTERED /PSYCHOSOCIAL OUTCOMES (Stutis et al 2007) 178 articles Biomedicial journals 46% Nursing journals 32% Psychosocial treatment 71% (n=126) Anxiety QoL Depression Stress Attitude to health Patient education 33% (n=59) 32% (n=57) 30% (n=53) 16% (n=29) 23% (n=13) 11% (n=19) Social support 10% (=18) Perceived control 0

8 SO WHAT BRINGS US DATABASES AND RESEARCHERS? Psychosocial treatments ICD, psychosocial treatment (n=74) ICD, psychosocial treatment, intervention (n=11) ICD, psychosocial treatment, intervention, review (n=2) ->Salmoirago-Blocher & Ockene 2009 (n=12) Programmes Multi-components Mono-components Support groups Phone support CBT ICD specific education Supplemented by relaxation and exercise

9 SO WHAT BRINGS US DATABASES AND RESEARCHERS? (mostly Salmoirago-Blocher & Ockene 2009) Questionnaires Effects Anxiety (HADS, STAI) Depression (HADS, BDI, CES-D) Perceived control (General Self-efficacy Scale [GSES], Mastery scale) Anxiety 6/9 =+ Depression 4/8 =+ Perceived control 2/10=0

10 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING QoL (HRQoL Health) ICD, psychosocial, QoL (n=43) ICD, psychosocial, QoL, review (n=15) ICD, psychosocial, QoL, intervention (n=7) ICD, psychosocial, OoL, intervention, review (n=1) ICD, psychosocial, HRQoL, (n=3) ICD, psychosocial, HRQoL, review (n=0) ICD, psychosocial, HRQoL, intervention (n=2) ICD, psychosocial, HRQoL, intervention, review (n=0) ICD, psychosocial, health (n=52) ICD, psychosocial, health, review (n=18) ICD, psychosocial, health, intervention (n=10) ICD, psychosocial, health, intervention, review (n=2) -> In all: 12 studies -> Pedersen et al 2007: 9 studies

11 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING QoL (mostly Pedersen et, 2007) Programmes Instruments Multi-components Mono-components ICD specific education CBT/(di)stress management Group support Webbased/Computerised support Euro-QoL Health Complaints Questionnaire (HCS) SF12 SF36

12 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING QoL (mostly Pedersen et 2007) Effects 2/12 =+

13 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING SELF-CONTROL (SELF-REGULATION WILLPOWER MASTERY LOCUS OF CONTROL COPING ADAPTATION) ICD, self-control, (n=0) ICD, self-regulation (n=0) ICD, willpower (n=0) ICD, mastery (n=0) ICD, psychosocial, locus of control (n=3) ICD, psychosocial, locus of control, intervention (n=0) ICD, psychosocial, locus of control, review (n=0) ICD, psychosocial, coping (n=24) ICD, psychosocial, coping, review (n=7) ICD, psychosocial, coping, intervention (n=4) ICD, psychosocial, coping, intervention, review (n=0) ICD, psychosocial, adaptation (n=24) ICD, psychosocial, adaptation, review (n=7) ICD, psychosocial, adaptation, intervention (n=4) ICD, psychosocial, adaptation, intervention, review (n=0) -> in all: 4 studies

SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING SELF-CONTROL (SELF-REGULATION WILLPOWER MASTERY LOCUS OF CONTROL COPING ADAPTATION) Programmes Instruments Multi-components Mono-components

14 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING SELF-CONTROL (SELF-REGULATION WILLPOWER MASTERY LOCUS OF CONTROL COPING ADAPTATION) Programmes Instruments Multi-components Mono-components Computer-based education Telephone follow-up Stress management programme Group support Specific ICD-related knowledge questionnaire Psychosocial Adjustment to Illness Scale (PAIS) Anecdotal reports

15 SO WHAT BRINGS US DATABASES AND RESEARCHERS REGARDING SELF-CONTROL (SELF-REGULATION WILLPOWER MASTERY LOCUS OF CONTROL COPING ADAPTATION) Effects Increased knowledge ¼=+ Device acceptance ¼ =+

16 REGARDING QUALITATIVE DESIGNS WHERE ARE THEY WITH REGARD TO FOLLOW-UPS Hallas et al 2010 perceived control Grounded theory analysis Perceived control emerged as the core category related to QoL with 3 themes related to control illness beliefs, attributions, and appraisals coping resources and strategies the social world Patients interpreted their illness as severe, utilized emotion focused coping (e.g., avoidance of situations), and believed themselves to be socially excluded Adjusted patients used proactive problem-focused coping (e.g., normalizing) and minimized consequences of the device

17 REGARDING QUALITATIVE DESIGNS WHERE ARE THEY WITH REGARD TO FOLLOW-UPS Kamphuis et al 2004 Experience the first year Qualitative content analysis 1) Physical deterioration, 2) cognitive changes, 3) perceived social support, 4) dependency, 5) contact with the doctor, 6) confrontation with mortality, and 7) uncertainty surrounding when having a shock: emerged as categories Well-being improved throughout the year During the first months after discharge from the hospital the focus was on regaining physical health During the early postimplantation period both patients and family members had adapted to the situation Reflection on the impact and consequences of the cardiac arrest was reported more often in the late postimplantation period

18 PATIENT-CENTERED AND PSYCHOSOCIAL INTERVENTION with regard to quality of life and self-control IN PATIENTS HAVING AN ICD Conclusions Implications Weak effects Few studies Few or poor described interventions Mostly small scale designs Few follow-ups Few longitudinal designs Few qualitative designs Age differences Gender differences Family differences Intervention (strategy and content, target group, time period, personnel)

19 ARTICLES WELL WORTH READING Dougherty et al 2004 Dunbar et al 2009 Hallas et al 2009 Kamphuis et al 2004 Pedersen et al 2007, 2009 Salmoirago-Blotcher & Ockene 2009 Smeulders et al 2007 Stutis et al 2007 Vijgen et al (Consensus statement of the European Heart Rhythm Association) 2009

20 THANKS FOR YOUR LISTENING A N Y S Y M P T O M A T I C OR S Y M P A T H E T I C Q U E S T I O N?

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