Selfmanagement of fatigue in chronic diseases

KNAW Symposium, 29 November 2016 Selfmanagement of fatigue in chronic diseases Prof. dr. Andrea Evers Health, Medical and Neuropsychology www.andreaevers.nl

Fatigue in chronic diseases one of the most frequent and disabling complaints for patients.

Selfmanagement in coping with fatigue in chronic diseases Ability to cope with e.g. - Lack of energy - Loss of motivation - Negative mood and lack of positive mood - Loss of (social) activities and networks Barlow et al., 2002; McGowan, 2005

Selfmanagement One s ability to cope with the symptoms, treatment, physical and psychosocial outcomes and lifestyle changes that come with having a chronic illness. Barlow et al., 2002; McGowan, 2005

Selfmanagement of fatigue 10 statements.

Selfmanagement of fatigue Statement 1 Selfmanagement is necessary.

Selfmanagement of fatigue in chronic diseases is necessary Chronic diseases up to 40% of the western population (eg. increasing number of patients with diabetes) Fatigue are the most important complaint for the growing number of chronic physical conditions Consequences: high impairments and disability in daily life Healthcare costs are increasing There is hardly any evidence-based guidelines how to handle fatigue in chronic diseases

Prevalence and consequences of fatigue in chronic diseases 30-80% prevalence of severe fatigue in chronic diseases e.g. Parkinson, diabetes, RA, stroke, MS, cancer survivors

Prevalence and consequences of fatigue in chronic diseases

Selfmanagement of fatigue Statement 2 Selfmanagement is not self-evident in view of the disabling and multifactorial consequences of fatigue.

Multiple determinants of fatigue in chronic diseases Pathofysiology chronic disease FATIGUE Negative mood Immune function

Multiple determinants of fatigue in chronic diseases Fatigue cross-load on all symptom clusters Need for self-management approaches

Selfmanagement of fatigue Statement 3 The majority of patients asks for selfmanagement in coping with fatigue.

Patients ask for selfmanagement 97% of the elderly want control and responsibility for their own health and healthcare. Population Study, Leiden Academy for Vitatliy and Aging, 2013 Selfmanagement one of the highest priorities of patients with a chronic disease (eg. kidney diseases, diabetes, rheumatic conditions) Surveys Patient Organizations 2011-2013

Priorities of patients Fatigue top priority in patients with chronic diseases (eg. kidney or liver diseases, rheumatic diseases, hemodialysis)

Priorities of patients Patient priorities in kidney disease 70 Fatigue highest priority 60 50 40 30 20 10 0

Selfmanagement of fatigue Statement 4 Patients can learn selfmanagement in coping with fatigue.

Aspects of self-management Knowledge Behavior Cognitions

Forms of self-management Education Life style change / disease management Cognitive behavioral trainings

Selfmanagement of fatigue Statement 5 Part of population with a chronic disease need selfmanagement support for fatigue.

Selfmanagement support for fatigue Education and supporting interventions aimed at increasing skills of patients in coping with fatigue Not like this but like this! McGowan, 2005

Stepwise Self-management Care What works for whom? Education 100% patients Life style change / disease management About 60-70% of all patients Cognitive behavioral trainings About 30-40% of all patients

Selfmanagement Statement 6 Education or information alone is not effective for fatigue in patients with chronic diseases.

Self-management - Education Illness-related education - Illness-specific information - Illness-related and generic problem-solving skills - Increase compliance with treatment Effects - Effects usually limited to increased knowledge - Little or no effect on fatigue and quality of life

Self-management Statement 7 Guided self-management support, aimed at cognitive- behavioral change is effective.

Selfmanagement Cognitive behavioural training - Psychological problems moderate to large effects (eg anxiety and depression) ES = 0.60 1.00 - Physical problems small to moderate effects (eg pain en fatigue) ES = 0.20 0.60 Butler, 2006, Clinical Psychology Review; Shedler, 2010, American Psychologist; Henningson, 2007, Lancet; Eccleston, 2009, Cochrane

Selfmanagement Cognitive behavioral training Shedler, 2010

Selfmanagement for fatigue: Non-pharmacological interventions Fatigue: small to moderate effects ES = 0.20 0.60

Selfmanagement for fatigue Statement 7 Selfmanagement support is (cost)effective for large groups of patients with chronic diseases.

Efficacy selfmanagement treatments Quality of life Physical complaints, such as fatigue, pain and itch Change of the immune system (eg. IL-8) or hormonal stress-system(eg. cortisol) Increased productivity at work Reduction of healthcare use, increased compliance, more adequate use of healthcare Neurobiological changes

Cost-effectiveness selfmanagement treatments Decrease in health-related costs, such as: - Visits to the doctor - Hospital admissions - Long-term complications - Workrelated costs (eg. Sick leave)

Selfmanagement of fatigue Statement 8 E-health selfmanagement support for fatigue is (cost)effective for large groups of patients with chronic diseases.

E-health: Digital selfmanagement

Benefits E-health selfmanagement for patients and health professionals Flexibility Patient can follow treatment in their own home when it best suits them Time-saving Not restricted by regular appointment-schedules. 50% reduction in time-investment therapist Daily environment Patient has not to come to the psychologist in the hospital

E-health Efficacy selfmanagement E-health and face-to-face selfmanagement equally effective for physical and psychological functioning in chronic diseases

E-health Role of guidance Guided E-health (d = 1.00) more effective than without guidance (d = 0.24)

E-health Cost-effectiveness - Evidence for cost-effectiveness E-health in physical and psychological conditions - Cost reductions eg because of less work-related loss of productivity in patients.

Clinical practice: Implementation Numerous illness-specific programs that are not tailored and matched to each other.

E-health Selfmanagement Screening and Treatment 1/3 of patients with chronic somatic conditions have adjustment problems E-health Screening with tailored risk profile for physical, psychological, and social adjustment problems Patient without risk profile: Standard care Patient with risk profile: Tailored care E-health tailored selfmanagement aimed at physical, psychological and social adjustment problems

E-health selfmanagement treatment Unique, disease generic ICT- selfmanagement program Regular tailored care for all conditions - Flexibel choice of treatment modules and techniques - Stepped care with more or less guidance (eg. psychologist, nurse) - Disease generic applied in all somatic conditions

E-health selfmanagement treatment Module for fatigue most popular in patients with chronic somatic conditions Effects found in RCTs for fatigue in patients with psoriasis and tendency for patients in rheumatoid arthritis Cost-effectiveness for total groups and subgroups Beugen et al, 2016, Ferwerda et al, revisoin

Selfmanagement Statement 9 Implementation of selfmanagement programs for fatigue in patients with chronic conditions is lacking.

Clinical practice: Implementation Lack of regular screening of patients for fatigue No applications of evidence-based treatment, eg effective cognitive-behavioral approaches for fatigue Lack of implementation: 3% E-health applications in primary healthcare in 2015 Protocols not tailored to 25% comorbidity chronic diseases

Selfmanagement Statement 10 Health professionals should be trained in selfmanagement support for patients with chronic diseases.

Towards innovative (online) treatments and therapists trainings University Treatment Centre Faculty Social and Behavioral Science Benedetti, Ann Rev Pharma Tox 2008

Self-management trainings 1. E-coach & Game health trainings 2. Training health care providers 3. Pharmacotherapeutic conditioning

Training health professionals in selfmanagement: Example 2-day ehealth selfmangement training, followed by individualized supervision Trained staff of psychologists very satisfied about program

Selfmanagement within the healthcare system McGowan, 2005

Take home. Fatigue is prominent, complex and underestimated problem in almost all chronic somatic conditions There are effective self-management approaches for fatigue for different chronic somatic conditions Lack of implementation of effective selfmanagement approaches for fatigue in regular care

Selfmanagement for severe fatigue in chronic diseases. can only be solved by a joined effort.

Selfmanagement for severe fatigue in chronic diseases. can only be solved by a joined effort. Let s start today!