Coping / Living with a brain tumour Coping / Living with a brain tumour

Leicester Information Day

Alex J MitchellLeicester

ajm80@le.ac.ukajm80@le.ac.uk

Classic Medical Model: Authoritarian

1. “need to know”

2. “don’t tell” / clinician in charge

3. Sick role

4. Victim / Lack of control

5. Reactive

6. Physically based

New Medical Model: Interactive

1. “what would you like to know”

2. Patient is at the centre

3. Rehab early

4. Promote control / autonomy

5. Proactive => prevention

6. Holistic

Issues Picked Up?Issues Picked Up?

Psychooncology. 2011 Nov;20(11):1221-7. doi: 10.1002/pon.1849. Epub 2010 Sep 27.

1660 Cancer Patients in Florida 1660 Cancer Patients in Florida (Jacobsen, 2010)(Jacobsen, 2010)

86

12

38

73

47

50

74

57

14

26

34

47

84

95

8482

90

84

97

55

88 88

93

88

0

10

20

30

40

50

60

70

80

90

100

A B C D E F G H I J K Mean

Emotional Wellbeing Assessed

Pain Assessed

Johnsen Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems Psychooncology. 2012

1000 Adv Cancer Patients in Denmark 1000 Adv Cancer Patients in Denmark (Johnsen, 2013)(Johnsen, 2013)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Pain

Nause

a

Dyspnoe

a

Lacko

fapp

etite

Depre

ssio

n

Work

anddai

lyac

tiviti

es

Physic

alac

tiviti

es

Fatig

ue

Worr

y

Family

andfri

ends

Concen

tratio

n

Sexua

lity

Had Problem

Helped

Adequate Help

94.2%

37.4%

8 yrs N= 9282 NCS-R

P Wang Harvard

In cancer?=>

If mental ill health is present in cancer:

1. Lower rates of cancer screening

2. Lower rates of cancer diagnosis

3. Lower rates of cancer treatment

4. Poorer adherence with treatment

5. Higher mortality

Chris Sedman

Main IssuesMain Issues

LeicesterN=540

35.6%

35.2%

34.6%

34.6%

34.5%

32.9%

32.7%

30.4%

29.4%

29.3%

29.1%

27.2%

26.8%

26.2%

25.9%

25.2%

25.1%

24.8%

24.4%

23.2%

23.1%

22.6%

20.4%

20.3%

0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0%

Worry about the future

Side-effects of treatments

Sleeping

Finances

Talking about use of food/herbal supplements

Fatigue (feeling tired)

Understanding my treatment options

Pain

Feeling anxious or fearful

Managing my emotions

Getting medicine(s)

Feeling dow n or depressed

Finding community resources near w here I live

Needing help coordinating my medical care

Insurance (Co-Pay, MediCal, MediCare, other major insurance)

Feeling irritable or angry

Questions and fear about end of life

Losing control of things that matter to me

Bow el movement/constipation

Transportation

Solving problems due to my illness

Finding reliable clinical information

How my family w ill cope

Talking w ith the doctor

N=1465

1. Worry about future

2. Fatigue / energy

3. Anxiety / depression

4. Family / relationships

5. Memory / concentration

6. Feeling helpless/alone

Distress

40%

Depress

25%

Anger

20%

Anxiety

50%

I feel low, hopelessI feel stressed

I feel worried I feel irritable “why me”?

Getting HelpGetting Help

What Help is Wanted?What Help is Wanted?

19% wanted medication (eg antidepressants)

31% want self help guidelines

31% wanted group therapy

56% wanted illness information.

58% complementary therapies

62% trusted face-to-face psychological support

Help – Who From?Help – Who From?

Nurse specialists (54%)

Family and friends (21%)

Spiritual advisor (8%)

Psychiatrist (4%).

Problems Getting Timely HelpProblems Getting Timely Help1.Help not requested (?trust)

2.Help not available

3.Help not given

4.Wrong help given

Proportion meta-analysis plot [random effects]

0.0 0.2 0.4 0.6 0.8 1.0

combined 0.40 (0.31, 0.50)

van Scheppingen et al (2011) [Referral] 0.14 (0.07, 0.25)

Mitchell et al (2012) [Referral] 0.19 (0.14, 0.25)

Verdonck-de Leeuw et al (2009) [Referral] 0.21 (0.05, 0.51)

Shimizu et al (2009) [Referral] 0.25 (0.18, 0.33)

Carlson et al (2010) [Referral] 0.30 (0.25, 0.35)

Keller et al (2004) [Referral] 0.34 (0.23, 0.46)

Bogaarts et al (2011) [Referral] 0.38 (0.27, 0.49)

Ellis et al (2009) [Referral] 0.42 (0.31, 0.54)

Kadan-Lottick et al (2005) 0.22 (0.17, 0.27)

Siedentopf et al (2009) 0.23 (0.19, 0.28)

van Scheppingen et al (2011) [help or referral] 0.32 (0.21, 0.45)

Bramsen et al (2008) 0.45 (0.35, 0.55)

Plass and Koch (2001) 0.47 (0.38, 0.56)

Shimizu et al (2005) 0.50 (0.41, 0.58)

Fritsche et al (2004) 0.51 (0.40, 0.61)

Mitchell et al (2012) [help or referral] 0.52 (0.46, 0.59)

Morasso et al (2010) 0.82 (0.66, 0.92)

Söllner et al (2004) 0.97 (0.91, 0.99)

proportion (95% confidence interval)

Offers of Help (n=2557)

Top Tips for Coping SuccessfullyTop Tips for Coping Successfully

1. Ask for help when needed

2. Talk with other patients / support groups

3. “What can I do” not “what have I lost”

4. Start slow but build up

5. Use family and friends

6. Plan for the future

Alfie Bangs

Innovations….Innovations….

What is Ideal Treatment?What is Ideal Treatment?

1. Effective

2. Acceptable

3. Easily accessible

4. Proven (evidence based)

5. Value for money

Personal StoriesPersonal Stories…power of peer support