Coping / Living with a brain tumour
Leicester Information DayAlex J Mitchell
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
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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*
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