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Chronic fatigue syndrome (CFS/ME) in adolescents: diagnosis and treatment

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Chronic fatigue syndrome (CFS/ME) in adolescents: diagnosis and treatment Anna Gregorowski Consultant Nurse Great Ormond Street Hospital for Children NHS Trust – PowerPoint PPT presentation

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Title: Chronic fatigue syndrome (CFS/ME) in adolescents: diagnosis and treatment


1
Chronic fatigue syndrome (CFS/ME) in
adolescentsdiagnosis and treatment
  • Anna Gregorowski
  • Consultant Nurse
  • Great Ormond Street Hospital for Children NHS
    Trust

2
Somatic symptoms in adolescence
  • Normal!
  • 8 adolescents daily headaches
  • 10 daily backache
  • 16 daily sleepiness in the mornings
  • 33 substantial fatigue 4 or more times a week
  • 66 morning fatigue/impaired waking

3
Fatigue in Adolescence
  • Fatigue common in adolescence
  • 1/3 boys and girls have substantial fatigue 4 or
    more times a week
  • 2/3 report morning fatigue to extent of impairing
    waking
  • normal part of adolescence

4
Fatigue in adolescence
  • Continuum of fatigue
  • normalacute excessive prolonged chronic
    fatigue syndrome
  • When and why might it become a problem?

5
What is chronic fatigue syndrome?
6
Diagnosing CFS/ME
  • Debilitating persistent or relapsing fatigue for
  • 3 months or more (not life-long)
  • Not the result of ongoing exertion and not
    substantially alleviated by rest.
  • Delayed post-exertional malaise and/or fatigue,
    with slow recovery over several days.
  • Severe enough to cause substantial reduction in
    previous levels of educational, social or
    personal activities
  • NICE CG 53 (2007)

7
Diagnosing CFS/ME
  • Sleep disturbance
  • Muscle pain
  • Joint pain
  • Headaches
  • Painful lymph nodes without pathological
    enlargement
  • Sore throats
  • Cognitive dysfunction
  • Post-exertional malaise
  • General malaise or flu-like symptoms
  • Dizziness
  • Nausea
  • Palpitations in the absence of identified cardiac
    pathology
  • Increased sensitivity to touch, noise, and / or
    light
  • NICE CG 53 (2007)

8
CFS/ME in CYP
  • 50 to 100 per 100 000 children
  • Higher rate in adolescence
  • Estimated UK prevalence of up to 2
  • Chalder et al 2003, Farmer et al 2004, Viner et
    al 2004, Crawley et al 2009

9
CFS/ME Blood tests
  • Full blood count
  • Urea and electrolytes
  • Liver function
  • Thyroid function
  • Erythrocyte sedimentation rate
  • C reactive protein
  • Random blood glucose
  • Serum Creatinine
  • Screening blood tests for gluten sensitivity
  • Serum calcium
  • Creatinine Kinase
  • Assessment of serum ferritin levels (children and
    young people)
  • Urinalysis for protein, blood and glucose

10
What to include in an assessment
11
Infection
Poor sleep
T I R E D N E S S
Vicious cycle
Miss school
Minimal activity/exertion
Isolated
Weakness
Low mood
Anxious
12
What is affected when an adolescent has CFS/ME?
  • Activity
  • Confidence
  • Eating
  • Everything
  • Family life
  • Fitness
  • Mood
  • Other illnesses
  • Pain
  • Relationships
  • School
  • Screens
  • Sleep
  • Social

13
Return to health
Increase exercise
RECOVERY
Virtuous cycle
Socialising
Increase mood
Education integration
Increase activity
Establish routine
Baseline
14
Managing CFS/ME the evidence
  • Graded activity programme
  • Baseline
  • Graded activity
  • Graded school reintegration
  • Graded exercise
  • Cognitive behavioural therapy
  • NICE CG53 (2007) and PACE (2011)

15
CFS/ME and graded activity
  • Start by establishing a baseline
  • Initial assessment
  • Include activity and fitness assessment
  • Activity diary
  • Done before?
  • 2 weeks helpful
  • Ask young person to do
  • YP friendly

16
Peak
Peak
Peak
Boom
Boom
Boom
Bust
Bust
Boom and bust cycle
17
Baseline
18
Sleep
  • 92 experience sleep disturbance
  • NOD, 25 October 2012
  • Initial insomnia
  • Sleep fragmentation
  • Sleep phase delay
  • Difficulty getting up
  • Sleep phase delay
  • Too little sleep

19
Sleep and CFS/ME
  • Establish a routine
  • Regular getting up time
  • Dress everyday
  • No daytime sleep

20
Sleep and CFS/ME
  • Get out each day
  • Small amount daily activity
  • Regular bedtime
  • No screens in bedroom
  • Medication only with sleep hygiene
  • Melatonin
  • Amitryptiline
  • Family sleep patterns?

21
CFS/ME and Eating
  • Healthy balanced diet
  • Food from all food groups
  • Include slow release low GI carbohydrates
  • Small meals and snacks
  • If IBS present, follow advice for IBS symptoms
  • British Dietetic Association January 2012

22
CFS/ME and Eating
  • Weight changes and concerns
  • Refer to dietician
  • Food allergy and intolerance
  • Keep a food / symptom diary
  • Elimination / exclusion diet only under dietician
    supervision
  • Supplements
  • Not enough research
  • Many products
  • Multivitamin and mineral supplement with no more
    than 100 RDA
  • Consider cost, dosage and safety
  • British Dietetic Association January 2012

23
Screen time
  • 7 years old full year of screen time
  • Average 10 year old access to 5 screens
  • British teens 6 hours per day
  • Dr A Sigman, ADC, 2012

24
Screens and CFS/ME
  • Screen Time average hours per day
  • TV 10
  • Computer (recreation) 3
  • Computer (school/homework) 0
  • Games console 0.5
  • Total 13.5 hours
  • GOSH patient aged 14 years at assessment October
    2012

25
Screens and CFS/ME
  • Limit screen time 3 to 4 hours maximum daily
  • No screens in school hours
  • Hour at a time / take breaks
  • Do something else
  • Keep a screen dairy
  • Family / peers and screen use?

26
CFS/ME and graded activity
  • Informal
  • Tidying room
  • Playing the piano
  • Knitting
  • Art work
  • Light gardening
  • Walking to local shops
  • Meeting a friend
  • Board games/cards
  • Cooking
  • Learning to drive

27
CFS/ME and graded activity
  • Formal
  • Stretching exercises
  • Start at 40 of max aerobic capacity (50 of
    their HR)
  • Establish regular pattern starting with few
    minutes
  • Graded increases (10 per week) to 30 minutes
    daily maximum
  • Introduce alternatives cycling, swimming
  • Strengthening programmes Pilates gym exercise
    (with guidance)

28
CFS/ME and graded activity Activity Diary
29
Questions?
30
Education and CFS/ME
  • 62 attend 40 or less of school
  • Crawley et al 2009
  • 68 school attendance affected
  • Sankey et al, 2006
  • Mean time out of school 1 academic year
  • Rangell et al, 2000
  • Average GCSEs 3 with 30.6 of respondents not
    passing or sitting GCSE exams
  • Patel et al, 2003
  • Annual cost to UK 100 million
  • Collin et al 2011

31
Reintegration into School
  • Often difficult
  • Illness of transition
  • Bullying
  • School refusal
  • May not be priority for the young person

32
School reintegration
  • Where might you start when helping a young person
    with CFS/ME get back to school?

33
Reintegration into School
Home Tuition
Tutor in Library
Increase class contact With support of Tutor
Spend time in class
Lunch
Reduced Timetable
Full time school
34
School and CFS/ME
  • Liaise with school and tutors early /may include
    a school meeting
  • Start with home tuition if possible and if YP
    not attending school
  • Home tuition alongside school attendance
  • Address difficulties getting into school early

35
School and CFS/ME
  • Subject by subject approach
  • Include social time at school
  • Reduced timetable reviewed regularly
  • Add sport towards end

36
Family Work
  • Nurse Consultant/Clinical Psychologist
  • Manage systemic anxieties beliefs
  • Modify behaviours
  • Parenting skills

37
Family work with CFS/ME
  • Eclectic incorporates CBT and systemic
    approached
  • Goals explored and set
  • Space to explore emotional issues surrounding
    illness and recovery
  • Family functioning further explored
  • Parents, siblings and other family (and sometimes
    non family) members

38
Pain and CFS/ME
  • Muscle pain 73.2
  • Joint pain 60.0
  • Headaches 78.6
  • Sore throats 58.0
  • Painful lymph nodes 41.2
  • Migraine 14.8
  • Chronic Regional Pain Disorder 2.7
  • NOD, 2012

39
Pain and CFS/ME
  • Graded activity
  • Improved sleep
  • Increased social contact
  • Appropriate analgesia
  • Review symptoms regularly

40
Pain and CFS/ME
  • Relevant tests and investigations if pain
  • New type
  • New or sudden onset
  • Worsening
  • Headaches
  • NICE (2012) Headaches Diagnosis and management
    of headaches in young people and adults.
  • BASH 2010 Guidelines for the diagnosis and
    management of headache
  • www.bash.org.uk

41
Headaches and CFS/ME
  • History and neurological examination
  • Medical tests?
  • Non pharmacological treatment
  • Eating regular / meals
  • Fluids 1 to 2 litres of water per day
  • School and social continue with school
    attendance and social activity
  • Exercise regular

42
Headaches and CFS/ME
  • Analgesia
  • treat early
  • adequate pain relief
  • When to refer to headache clinic
  • New onset
  • Does not improve / worse
  • Concern / red flags

43
Anxiety and Depression in CYP with CFS/ME
  • 50 of young people with CFS/ME have a co morbid
    mood disorder (Garralda et. al., 2000)
  • (Healthy population 20, Verhulst Koot,
    1995)
  • Anxiety disorders more prevalent than depression
    (Other way round for CFS/ME Adults, Carter et
    al., 1996)
  • 50 of families believe that psychological
    factors possibly play a role in CFS/ME (Viner et
    al, 2004 though research didnt confirm this)

44
Anxiety and Depression in CYP with CFS/ME
  • Co-morbid anxiety 12.3
  • Co-morbid depression 9.5
  • NOD, 25 October 2012

45
Anxiety and Depression in CYP with CFS/ME
  • NICE guidance
  • Anxiety CG 22 (2007)
  • CFS/ME CG 53 (2007)
  • Graded activity
  • CBT
  • Depression in children and young people
  • CG 28 (2005)

46
Psychology
  • CBT a talking therapy aimed at
  • - how you think about yourself, the world and
    other people
  • - how what you do affects your thoughts and
    feelings.
  • - Instead of focusing on the causes of your
    distress or symptoms in the past, it looks for
    ways to improve your state of mind now.

47
Prognosis?
  • The younger the person more likely there will
    be full recovery
  • (Joyce, Hotopf, Wessely 1997)
  • 80 of children and young people on a
  • rehabilitation programme make a full recovery
    (Viner et al, 2004)
  • 54 to 94 of children make a good recovery
    (Rimes et al, 1997)
  • 90 make a full recovery (Crawley, 2007)

48
Clinical Global ImprovementNOD October 2012
49
Recovery and CFS/ME
  • stroppy teenager
  • doing more than one thing in a row
  • contacting friends
  • no more headaches
  • making up for lost time
  • going on school trips
  • having arguments
  • Relapse Prevention Group Programme November 2011

50
Recovery and CFS/ME
  • not using wheelchair
  • being impulsive
  • not saying Im tired as much
  • playing with siblings and pets
  • good sense of humour joker coming out
  • playing tennis
  • room in head to show empathy
  • Relapse Prevention Group Programme November 2011

51
Recoverywhat helps?
  • Show understanding
  • Staying with the patient for the journey
  • Therapeutic alliance and positive outcome
  • Learned optimism
  • Positive role modelling
  • Keeping hope alive
  • what was helpful about grandparents and
    professionals belief that recovery was possible
  • Give clear, honest, hopeful message about
    recovery
  • 2 things need to improve and one is that there
    need to be more positive messages about recovery
  • Relapse Prevention

52
Relapse Prevention
  • Offered towards end of effective treatment
  • 90 or above school
  • 90 or above wellness
  • Nearing discharge
  • Focuses on
  • Symptoms on referral
  • What helped
  • What hindered
  • Having a PLAN in place to reverse illness process

53
Transition?
  • Transition should be planned
  • Transition getting it right for young people
  • Challenge fewer general physician equivalents in
    adult care (DH 2006)
  • But more adult than children and young peoples
    services
  • Timing most recover but some will need to go on
    to adult services.

54
CFS/ME management summary
  • Early intervention
  • Involvement of MDT (where possible)
  • Engagement with family school
  • Activity routine planning
  • Young persons long short term goals
  • Helping to modify beliefs
  • Managing co-morbid issues eg BJHS, social phobia,
    school avoidance

55
When progress stops
  • Correct diagnosis?
  • Hidden complexities
  • Opting out of education
  • Changes in family structure
  • Be aware of our limitations

56
References
  • Crawley, E (2007) . Is Chronic Fatigue Syndrome
    Heritable in Children and if so why does it
    matter? Archives of Disease in Childhood. 92,
    1058-1062
  • Dommerholt, J. (2004) Complex regional pain
    sydrome-2physical therapy management. Journal of
    body work and movement therapies. 8241-248
  • Fukuda et al (1994) The Chronic Fatigue Syndrome
    A comprehensive approach to its definition and
    study. Ann International medicine 121953-959
  • Fulcher White (2000) Strength and
    physiological response to exercise in patients
    with CFS in Journal of Neurology Neurosurgery
    Psychiatry, 69302-307
  • Joyce, J., Hotopf, M., Wessely, S. (1997) The
    prognosis of chronic fatigue and chronic fatigue
    syndrome a systematic review. QJM an
    International Journal of medicine. Volume 20
    Issue 3 223-233
  • Lask, B.(2004). Pervasive Refusal Syndrome.
    Advances in Psychiatric Treatment. Vol 10
    153-159
  • Leary, P.M. (2003) Conversion disorder in
    childhood- diagnosed too later, investigated too
    much? Journal of the Royal Society of Medicine.
    Vol 96, 436-438
  • NICE guidelines Chronic fatigue syndrome/myalgic
    encephalomyelitis. httpllwww.nice.org.uk
  • Nijs, J et al (2012) Pain in Patients with
    Chronic Fatigue Syndrome Time for Specific Pain
    Treatment? Pain Physician 2012 15E677-E686
  • Viner, R., Gregorowski, A., Bladen, M (2004)
    Outpatient Rehabiliation Treatment for CFSME.
    Archives of Disease in Childhood. 89, 615- 619
  • White, P. et al (2010). Comparison of adaptive
    pacing therapy, cognitive behaviour therapy,
    graded exercise therapy, and specialist medical
    care for Chronic Fatigue Syndrome (PACE) a
    randomised trial. The Lancet. Vol 377 823-836

57
  • Anna.gregorowski_at_gosh.nhs.uk
  • 0207 8138541
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