Rehabilitation and Intensive Care Aftercare

1. Rehabilitation and Intensive Care Aftercare Dr Christina Jones Nurse Consultant Critical Care Follow-up School of Clinical Science, University of Liverpool, and Intensive Care, Whiston Hospital, UK

2. Why do patients need intensive care aftercare? • Physical recovery • Prolonged recovery 6 months – 1 year • Muscle mass loss and muscle weakness • Absence or poorly resourced physiotherapist services in UK • Psychological recovery • Anxiety, depression, panic attacks, post traumatic stress disorder • Long waiting list for counselling/psychology • Amnesia for ICU experience

3. Physical activity at 7 weeks post-ICU Walking downstairs Walking outdoors (not flat) Predicted by: Age (0.001) ICU stay (0.001) Premorbid health (0.042) Predicted by: Age (0.0001) ICU stay (0.003)

4. Perception of physical changes • The following frequently cause distress: • Taste changes & altered appetite or eating pattern • Severe muscle wasting • weakness, difficulty with daily living • change in body image, poor fit of clothes • Paraesthesia • Joint stiffness • Sexual dysfunction • Hair loss, scars, skin changes, nail ridges • Distress arises in the absence of a memory for the illness

5. Physical recovery • Mobility at 2 month OPD (n = 148) Unable or difficulty climbing stairs 65 (44%) Mobility indoors Stick 17 (12%) Zimmer frame 6 (4%) Wheelchair 7 (5%) Mobilityoutdoors Stick 15 (10%) Zimmer frame 1 (1%) Wheel chair 43 (29%) (C. Jones, RD. Griffiths. Clinical Intensive Care. 2000;11(1):35-38)

6. Patient Amnesia for ICU No true experience, gap in autobiography Lack reality check and feelings of safety Distorted perspective on illness & recovery Delusions Strongly held & frightening risk of PTSD Only experience of ICU if amnesic Relatives Vivid experiences conflict with patients Over protective and fearful Unable to support and talk through with patient Highly stressed risk of PTSD exceeds personal & social coping Patient & Relative “conflicts” in care Information needs to be shared

7. Rehabilitation post ICU • Rehabilitation programmes have been shown to aid both physical and psychological recovery • Chronic Obstructive Pulmonary Disease • reduced panic and perception of breathlessness • Myocardial Infarction • accelerated physical recovery • reduced anxiety and depression • Chronic pain • increased physical activity • reduced depression

8. Patient directed rehabilitation • ICU Recovery Manual • psychological advice on coping with anxiety, depression, stress management etc • Grade exercise programme • Educational principles • self-directed • monitors & reviews • self discovery • Programme commenced at 1 week • Close relative shares information ©BMJ 1999; 319:427-9

9. Method - study design • Patient group studied • emergency admissions or booked surgery with complications • recruited at 1 week post ICU at three hospitals with established follow-up ward visits and clinics • Block randomised, controlled trial • Control • normal follow-up ward visits, OPD and three telephone calls at home • Intervention • normal follow-up ward visits, OPD and three telephone calls at home • ICU Rehabilitation Manual (6 week programme)

10. Physical and psychological recovery at 8 weeks and 6 months post ICU (+ smoking cessation) by researcher blind to study group Endpoint measures

11. Results - patients • 126 patients recruited • 102 completed 6 month follow-up • 10 deaths (older patients) 14 withdrawal (younger)

12. P=0.0006 After ICU rehabilitation and Smoking cessation • 30 intervention and 31 control ventilated patients • Median stay 11 v 11 days • Median age 57 v 51 years • Median APII 17 v 16 • Higher quitting rate with intervention by 6/12 • Quitters showed no difference in levels of anxiety,depression or PTSD symptoms Jones, Skirrow, Griffiths, Humphris ICM 2001;27:1547-1549

13. Physical Recovery Normal population mean mean for severe illness * * Intervention patients Control study patients *Repeated measures ANOVA p = 0.006 Intervention period

14. At 8 weeks suggested reduction in depression 12% rehab manual 25% controls HAD score>11 just not significant (p=0.06) No difference anxiety Reduced symptoms of acute PTSD at 8 weeks IES, intrusion & avoidance (p=0.026) At 6/12 rate of depression the same 10% rehab manual 12% control No difference anxiety (30%) But No effect on symptoms of PTSD at 6/12 analysis of ICU memory explains results Psychological recovery

15. Impact of Events Scale Significantly lower intrusion/avoidance at 8 weeks in the intervention group that is lost at 6 months with delusions Controls with delusions P= 0.026 no delusions Intervention no delusions

16. Conclusions • A six week rehabilitation programme:- • improves physical recovery • trend to less depression • The presence of delusional memories confounds any effect on other indicators of psychological distress. • In the presence of delusional memories a six week package is inadequate • These patients should be identified

17. Treatment of PTSD

18. Assessment of memories • ICU Memory Tool (ICUM) • Validated for ICU patients • Assesses • Memory for admission to hospital • factual memory for ICU • Memory for feelings • Delusional memories C. Jones et al. Clinical Intensive Care 2000;11(5):251-255. • Assessment of impact of these memories • Are they able to sleep? • Are they getting flashbacks? • Are they getting panicky thinking about the memories?

19. NICE recommendations on PTSD • Screen at 1 month • Use a tool: frightening events, flashbacks and nightmares • If mild symptoms “Watch and wait” and review in one month • Do NOT give a single “trauma” debriefing (may even be harmful) • “Trauma-focused” cognitive behavioural therapy (CBT) • To those with severe post-traumatic symptoms • or with severe PTSD in the first month after the traumatic event • Drug treatments for PTSD should NOT be used as a routine first-line treatment for adults • Consider the following drug treatment for sleep disturbance: • hypnotic medication for short-term use (Z - drugs) • a suitable antidepressant for longer-term use • Only consider paroxetine or mirtazapine if patient refuses to engage with CBT National Institute of Clinical Excellence, UK Clinical Guideline 26, March 2005

20. Screening for PTSD • UK-PTSS-14 (Development on from PTSS-10 (Schelling et al, 1998)) • At 1-2 months predicts those at greatest risk PTSD • Patients rate themselves on a scale 0-7 for 14 items • Includes assessment for 4 traumatic memories of ICU • PTSS-14 validated against diagnostic measure of PTSD • Posttraumatic Stress Diagnostic Scale (PDS) (Foa, 1995) • Good internal reliability (a = 0.86) • Good test-retest reliability (r = 0.9; 95% CI 0.81-0.94) • Predictive validity • PTSS-14 at 2 months predicted PDS at 3 months • r = 0.89; p < 0.01

21. Cognitive behavioural therapy • “Trauma-focused” • Systematic desensitisation • Anxiety management (stress inoculation training) • Relaxation training : to control fear and anxiety • Breathing retraining • Positive thinking and self-talk • Thought stopping • Challenging unrealistic beliefs about trust, power, esteem • Imaginal exposure : repeated emotional recounting of the traumatic memories until no longer evoke high levels of distress • In vivo exposure: confrontation with avoided situations in controlled sessions

22. Interventions specific to ICU patients • Ward visits as soon as possible after ICU & repeated • Examine memories for ICU • “Normalisation” – telling it is normal • Helping to handle nightmares • Severe symptoms for CBT • At one month if mild symptoms “watch & wait” • Reassess after 1 month • Outpatient appointment 2 months • Going through their ICU story (once they are ready) • Revisit symptoms if no recovery refer on • Revisiting the ICU/HDU • Putting delusional memories into context • Prospective ICU diaries with photographs • Given to patient either on the wards or in clinic • Acting as natural cognitive behavioural therapy?

23. Photo diaries in ICU

24. Diaries within ICU Pioneered by Nurse Carl Backmänn Dept. of Anaesthesia & Intensive Care, Norrköping, Sweden • Real time record of ICU/HDU stay • Relatives can contribute as much as they want • Anyone can write but must sign name, include what happens in ICU and at home. • Photos during stay • Released on patient consent • Read at home during recovery

25. ICU Diaries • Prospective record of ICU • Everyday language • Photographs • May be difficult to get staff to write in them • Litigation fears • Patients want to receive them • Used to challenge flashbacks • Needs further studies as an intervention

26. RACHEL study - ICU Diaries • Three study sites doing diaries (~50%) • Those patients receiving diaries • significantly lower PTSD symptoms (p = 0.043) • Patients recalling delusions biggest difference (p = 0.028) • It could be that the diaries are acting like a natural cognitive behavioural therapy (CBT). • Naturally working through the traumatic memory to reduce its ability to cause distress and physiological arousal.

27. Intensive Care Aftercare • Combination approach • Early exercise in ICU • Recognition of early psychological symptoms • Watch and wait if not severe • Diary of ICU/HDU stay • Rehabilitation package post ICU • Assessment of psychological recovery • Normalisation of symptoms first line • Medication for nightmares • Refer those with severe symptoms for help • Reassess physical and psychological recovery in clinic

28. Lessons from follow-up & aftercare:helping after ICU (since 1990) • Talk to and help patients early enough • Intervene well before 6/12 • Questionnaires do not help unless a screening tools • Do not ignore amnesia: it is a problem • ICU recall can be false • Delusional experiences have consequences • Formal two-way restoration of experience is needed • Single debriefing of patients may even be harmful • Patient demand for diaries • Recognise cognitive deficits • The struggle to make decisions • Acknowledge the distress in Relatives • Re-enforces anxiety in the patient • Exceed their ability to cope with the patient at home

29. Future RACHEL research Hope to enlarge the group of units • Randomised study of the effect of diaries on PTSD • Cognitive deficits post critical illness

30. Griffiths RD & Jones C, Butterworth Heinemann Oxford, Jan 2002 £20.99 • Immediate problems after ICU • physical & psychological issues • After discharge from hospital • sex & nutrition • physical & psychological recovery • After care programme • where, when, how and who • Active rehabilitation • Patient Diaries • The greater role for aftercare • Bereavement, outcome and supporting staff christinajonesc@aol.com