Coping / Living with a brain tumour

Leicester Information DayAlex J Mitchell

Leicesterajm80@le.ac.uk

Classic Medical Model: Authoritarian

need to know dont tell / clinician in charge Sick role Victim / Lack of control Reactive Physically based

New Medical Model: Interactive

what would you like to know Patient is at the centre Rehab early Promote control / autonomy Proactive => prevention Holistic

Issues Picked Up?

Psychooncology. 2011 Nov;20(11):1221-7. doi: 10.1002/pon.1849. Epub 2010 Sep 27. 1660 Cancer Patients in Florida (Jacobsen, 2010)

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8684

1295

3884

7382

4790

5084

7497

5755

1488

2688

3493

4788

Emotional Wellbeing Assessed

Pain Assessed

Sheet1

Emotional Wellbeing AssessedPain Assessed

A8684

B1295

C3884

D7382

E4790

F5084

G7497

H5755

I1488

J2688

K3493

Mean4788

Action Take

A73

B40

C35

D50

E100

F57

G64

H36

I58

J13

K60

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

Evaluating the quality of psychosocial care in outpatient medical oncology settings using performance indicators.

Jacobsen PB, Shibata D, Siegel EM, Lee JH, Fulp WJ, Alemany C, Abesada-Terk G Jr, Brown R, Cartwright T, Faig D, Kim G, Levine R, Markham MJ, Schreiber F, Sharp P, Malafa M.

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Emotional Wellbeing Assessed

Pain Assessed

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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 (Johnsen, 2013)

Chart1

0.554721030.81431334620.5106382979

0.26431718060.68333333330.4375

0.34787472040.52411575560.3054662379

0.29042904290.51515151520.303030303

0.42434210530.51679586560.2713178295

0.48390677030.4954128440.2408256881

0.53736263740.50306748470.2290388548

0.60635964910.43218806510.226039783

0.53399122810.44147843940.1971252567

0.25274725270.2478260870.1434782609

0.38427464010.27377521610.1008645533

0.52230483270.32028469750.0818505338

Had Problem

Helped

Adequate Help

Sheet1

Had ProblemHelpedAdequate HelpInadequteNot-HelpedNo DesireDesiredNeed but no help

Fatigue91255361%23943%12523%10947%31457%8128%21472%32335%

91048954%24650%11223%13054%24350%6730%16070%29032%

90143648%21649%10524%10851%22051%5025%15275%26029%

Worry91248753%21544%9620%11554%27256%9336%16964%28431%

53828152%9032%238%6574%19168%9152%8548%15028%

Pain93251755%42181%26451%14836%9619%2325%7075%21823%

90334738%9527%3510%5963%25172%7531%16569%22525%

Depression91238742%20052%10527%9247%18748%5028%12672%21824%

Dyspnoea89431135%16352%9531%6641%14848%3022%10978%17419%

Nausea90824026%16468%10544%5534%7531%1826%5074%10512%

Lackofappetite90926429%13652%8030%5340%12849%5044%6556%11813%

91023025%5725%3314%2038%17275%7550%7750%9711%

Johnsen AT, Petersen MA, Pedersen L, Houmann LJ, Groenvold M. Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problemsPsychooncology. 2012 Oct 8. doi: 10.100

Had Problem

61%Fatigue91255361%

55%Pain93251755%

54%91048954%

53%Worry91248753%

52%53828152%

48%90143648%

42%Depression91238742%

38%90334738%

35%Dyspnoea89431135%

29%Lackofappetite90926429%

26%Nausea90824026%

25%91023025%

51%Pain517421264

44%Nausea240164105

31%Dyspnoea31116395

30%Lackofappetite26413680

27%Depression387200105

24%436216105

23%489246112

23%Fatigue553239125

20%Worry48721596

14%2305733

10%3479535

8%2819023

Had ProblemHelpedAdequate HelpHad ProblemHelpedAdequate Help

0.5106382979Pain932517421264Pain55%81%51%

0.4375Nausea908240164105Nausea26%68%44%

0.3054662379Dyspnoea89431116395Dyspnoea35%52%31%

0.303030303Lackofappetite90926413680Lackofappetite29%52%30%

0.2713178295Depression912387200105Depression42%52%27%

0.2408256881Workanddailyactivities901436216105Workanddailyactivities48%50%24%

0.2290388548Physicalactivities910489246112Physicalactivities54%50%23%

0.226039783Fatigue912553239125Fatigue61%43%23%

0.1971252567Worry91248721596Worry53%44%20%

0.1434782609Familyandfriends9102305733Familyandfriends25%25%14%

0.1008645533Concentration9033479535Concentration38%27%10%

0.0818505338Sexuality5382819023Sexuality52%32%8%

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Had Problem

Helped

Adequate Help

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94.2%37.4%8 yrsN= 9282 NCS-RP Wang HarvardIn cancer?=>

If mental ill health is present in cancer:

Lower rates of cancer screeningLower rates of cancer diagnosisLower rates of cancer treatmentPoorer adherence with treatmentHigher mortality

Chris Sedman

Main Issues

LeicesterN=540

N=1465

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0.3562257336

0.3518637543

0.3459331741

0.3456075768

0.3454002257

0.3287616382

0.3269045734

0.3039997952

0.2941875085

0.293201843

0.2906029352

0.2721162457

0.2684912628

0.262081843

0.2585926962

0.2519088789

0.2505951843

0.2484248588

0.2437115877

0.2317387713

0.2306750188

0.225826

0.2044064846

0.2031082769

All clinics combined

PROBLEM ITEM (Alphabetical)Not Needed_RAWCountNot Needed ALL%Needed_RawCountNeeded_ALL%Needed_ALL%PROBLEM ITEM (Ranked "most needed")

Ability to have children1248132993.9%8113296.1%35.6%Worry about the future35.6%

Becoming too ill to communicatemy choices about medical care1181142482.9%243142417.1%35.2%Side-effects of treatments35.2%

Being unable to take care of myself14217780.4%3517719.6%34.6%Sleeping34.6%

Bowel movement/constipation1005132975.6%324132924.4%34.6%Finances34.6%

Controlling my urine or stool31636187.4%4536112.6%34.5%Talking about use of food/herbal supplements34.5%

Eating, chewing, or swallowing difficulties1272146586.8%193146513.2%32.9%Fatigue (feeling tired)32.9%

Fatigue (feeling tired)983146567.1%482146532.9%32.7%Understanding my treatment options32.7%

Fear of medical procedures (needles, enclosed places, surgery)1183146580.7%282146519.3%30.4%Pain30.4%

Feeling anxious or fearful1034146570.6%431146529.4%29.4%Feeling anxious or fearful29.4%

Feeling down or depressed1066146572.8%399146527.2%29.3%Managing my emotions29.3%

Feeling hopeless16917795.7%81774.3%29.1%Getting medicine(s)29.1%

Feeling irritable or angry994132974.8%335132925.2%27.2%Feeling down or depressed27.2%

Finances959146565.4%506146534.6%26.8%Finding community resources near where I live26.8%

Finding community resources near where I live1072146573.2%393146526.8%26.2%Needing help coordinating my medical care26.2%

Finding meaning or purpose in my life1206132990.7%12313299.3%25.9%Insurance (Co-Pay, MediCal, MediCare, other major insurance)25.9%

Finding reliable clinical information23230077.4%6830022.6%25.2%Feeling irritable or angry25.2%

Getting medicine(s)1039146570.9%426146529.1%25.1%Questions and fear about end of life25.1%

How my family will cope1166146579.6%299146520.4%24.8%Losing control of things that matter to me24.8%

Insurance (Co-Pay, MediCal, MediCare, other major insurance)1086146574.1%379146525.9%24.4%Bowel movement/constipation24.4%

Joint limitations (including jaw)1132132985.2%197132914.8%23.2%Transportation23.2%

Losing control of things that matter to me13317775.2%4417724.8%23.1%Solving problems due to my illness23.1%

Managing my emotions1035146570.7%430146529.3%22.6%Finding reliable clinical information22.6%

Managing work, school or home life1112132983.7%217132916.3%20.4%How my family will cope20.4%

Needing help coordinating my medical care1081146573.8%384146526.2%20.3%Talking with the doctor20.3%

Needing practical help at home1227146583.7%238146516.3%20.3%Swelling

Pain1020146569.6%445146530.4%19.6%Being unable to take care of myself

Physical appearance1203146582.1%262146517.9%19.3%Fear of medical procedures (needles, enclosed places, surgery)

Questions and fear about end of life996132974.9%333132925.1%17.9%Physical appearance

Recent weight change1117132984.0%212132916.0%17.1%Becoming too ill to communicatemy choices about medical care

Sexual function1164132987.6%165132912.4%16.3%Managing work, school or home life

Side-effects of treatments950146564.8%515146535.2%16.3%Needing practical help at home

Sleeping958146565.4%507146534.6%16.0%Recent weight change

Solving problems due to my illness1022132976.9%307132923.1%15.9%Understanding the importance of physical activity even during treatment

Speech25930086.3%4130013.7%15.9%Walking, climbing, stairs

Spiritual or religious concerns1341146591.5%12414658.5%14.8%Joint limitations (including jaw)

Substance Use- by you or in your environment (drugs, alcohol, nicotine, prescription meds, others)1380146594.2%8514655.8%13.7%Speech

Swelling1059132979.7%270132920.3%13.2%Eating, chewing, or swallowing difficulties

Talking with the doctor1059132979.7%270132920.3%12.6%Controlling my urine or stool

Talking with the health care team about use of food/herbal supplements while on treatment870132965.5%459132934.5%12.4%Sexual function

Tobacco Use1394146595.1%7114654.9%9.3%Finding meaning or purpose in my life

Transportation1126146576.8%339146523.2%8.5%Spiritual or religious concerns

Understanding my treatment options986146567.3%479146532.7%6.1%Ability to have children

Understanding the importance of physical activity even during treatment18922584.1%3622515.9%5.8%Substance Use- by you or in your environment (drugs, alcohol, nicotine, prescription meds, others)

Walking, climbing, stairs1232146584.1%233146515.9%4.9%Tobacco Use

Worry about the future906132968.2%473132935.6%4.3%Feeling hopeless

All clinics combined

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Worry about future

Fatigue / energy

Anxiety / depression

Family / relationships

Memory / concentration

Feeling helpless/alone

Distress40%Depress25%Anger20%Anxiety50%I feel low, hopelessI feel stressedI feel worriedI feel irritable why me?

Getting Help

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?Nurse specialists (54%)

Family and friends (21%)

Spiritual advisor (8%)

Psychiatrist (4%).

Problems Getting Timely HelpHelp not requested (?trust)

Help not available

Help not given

Wrong help given

Offers of Help (n=2557)

Top Tips for Coping SuccessfullyAsk for help when needed

Talk with other patients / support groups

What can I do not what have I lost

Start slow but build up

Use family and friends

Plan for the future

Alfie Bangs

Innovations.

What is Ideal Treatment?

Effective

Acceptable

Easily accessible

Proven (evidence based)

Value for money

Personal Storiespower of peer support

*In an audit of medical records of 1660 patients seen in Florida cancer centres, Jacobsen et al (2010) found that only 52% contained evidence of an assessment of psychosocial wellbeing

Jacobsen PB, Shibata D, Siegel EM, Lee JH, Fulp WJ, Alemany C, Abesada-Terk G Jr, Brown R, Cartwright T, Faig D, Kim G, Levine R, Markham MJ, Schreiber F, Sharp P, Malafa M. Evaluating the quality of psychosocial care in outpatient medical oncology settings using performance indicators. Psychooncology. 2011 Nov;20(11):1221-7. doi: 10.1002/pon.1849. Epub 2010 Sep 27. Johnsen AT, Petersen MA, Pedersen L, Houmann LJ, Groenvold M. Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problemsPsychooncology. 2012 Oct 8. doi: 10.1002/pon.3204. [Epub ahead of print] Figure 1. Cumulative lifetime probability of treatment contact for mooddisorders from year of onset. Based on survival analysis. The estimatedproportion of cases that will eventually make treatment contact: bipolardisorder (BPD) I and II, 90.2%; dysthymia (DYS), 94.2%; major depressiveepisode (MDE), 88.1%. Significance of differences among curves: 22=0.7,P=.718.

Objective: To provide data on patterns and predictorsof failure and delay in making initial treatment contactafter first onset of a mental disorder in the United Statesfrom the recently completed National Comorbidity SurveyReplication.Design and Setting: Nationally representative faceto-face household survey carried out between February2001 and April 2003.Participants: A total of 9282 respondents aged 18 yearsand older.Main Outcome Measures: Lifetime DSM-IV disorderswere assessed with the World Mental Health (WMH)Survey Initiative version of the World Health OrganizationComposite International Diagnostic Interview(WMHCIDI),a fully structured interview designed to be administeredby trained lay interviewers. Information about ageof first professional treatment contact for each lifetime DSMIV/WMH-CIDI disorder assessed in the survey was collected

Karen Clark Matt Loscalzo City of Hope*Karen Clark Matt Loscalzo City of Hope*Karen Clark Matt Loscalzo City of Hope**N=300Karen Clark Matt Loscalzo City of Hope*