lpt08 - role of help & unmet needs in cancer screening (march08)

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This is an academic presentation on the role of asking "do you need help" part of a pilot research programme in Leicester. Presented to local team Leicester Partnership Trust 2008.

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Alex Mitchell Leicester Royal InfirmaryElena Baker-Glenn University of NottinghamPaul Symonds Leicester Royal InfirmaryChris Coggan Leicester General HospitalLouise Granger Leicester Royal InfirmaryKufrie Sampson Leicester Royal Infirmary

Team Mar 2008Team Mar 2008

Evidence Based Screening for Mood Disorders in Cancer Settings

What Is the Role of Asking:“Do You Need Help?”

1. Purpose of Screening?1. Purpose of Screening?

Purpose of ScreeningPurpose of Screening

(1)To detect people with unrecognized symptoms?

(2) To detect people in distress/emotional dis?

(3) To detect people in denial?

(4) To detect people in distress+denial?

(5) To detect people who want help?

(6) To detect people who need and want help

Distribution of DT ScoresRansom (2006) PO (n=491)

13.814.7

15.7

13.2

10.4

8.47.7 7.3

3.7 3.3

1.8

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

16.0

18.0

Score 0 Score 1 Score 2 Score 3 Score 4 Score 5 Score 6 Score 7 Score 8 Score 9 Score 10

PHQ9 Linear distribution

0

5

10

15

20

25

30

35

Zero One Two

Three

Four

Five Six

Seven

Eight

Nine

TenElev

enTwelveThir

teen

Fourte

enFifte

enSixt

een

Sevente

enEigh

teen

PHQ9 (Major Depression)PHQ9 (Minor Depression)PHQ9 (Non-Depressed)

Baker-Glen, Mitchell et al (data on file)

Depression

13%

20%

57%

48%

38%

18%

Anxiety

Distress/Adjustment Disorder

Rate of anxiety 18% from StarkDistress 57% from Ransom DT

462 (42%)Meetable Needs

1093 (100%)Population

388 (84%)Aware of Need

172 (44%)Requested Help

80 (47%)Needs Met

462 needs

17.3%

322 DSMIV

25%

DT

15%

DT(38%)

AngT(26%)

DepT(30%)

AnxT(65%)

8%

2%

4%

0%

10%

0%

0%

0%

2%

21%

1%

2%

2x2 Help Table2x2 Help Table

=>Agree discharge=> DelayPatient Says:Help Not Wanted

=> Refuse?=> InterventionPatient Says:Help Wanted

Clinician thinks:Help Not Needed

Clinician thinks:Help Needed

2. Background2. BackgroundWhy help is important in the literature

Arrol et al (2005) BMJArrol et al (2005) BMJ

Setting 19 general practitioners in six clinics in New Zealand. Participants 1025 consecutive patients receiving no psychotropic drugs.

After screening “is this something you would like help with?

The help question alone had a sensitivity of 75% and a specificity of 94%

The general practitioner with PHQ2 diagnosis had a sensitivity of 79% and a specificity of 94%

Arrol (2005) – Mj DepressionArrol (2005) – Mj Depression

47 CIDI cases with Major depression

25 (53%) wanted help

10 (21%) wanted the option of help

12 (25%) did not want help

Arrol (2005) – No DepressionArrol (2005) – No Depression

889 CIDI cases with Major depression

27 (3%) wanted help

24 (3%) wanted the option of help

838 (94%) did not want help

Graves et al (2005)Graves et al (2005)

333 Consecutive patients (N = 333) were recruited from an outpatient multidisciplinary lung cancer clinic to complete the Distress Thermometer, an associated Problem Symptom List

“Do you wish to get help for these problems?”

- Please circle the number (0-10) that best describes how much distress you have been experiencing in the past week, including today.

- What phone number would you like us to contact you on if necessary?

Please tick WHICH of the following is a cause of distress:

DiarrhoeaAnger

ConstipationWorry

IndigestionSadness

EatingNervousness

Is there anything important you would like to add to the list?__________________________________________________________________________________________

Mouth soresFears

BreathingDepression

Bathing/ DressingEmotional Problems

Getting around

Hot flushesSleepDealing with children

SexualFatigueDealing with partner

Feeling swollenNauseaFamily Problems

Metallic taste in mouthPain

Tingling in hands/ feetPhysical problemsWork/School

Nose dry/ congestedTransport

Skin dry/ itchyLoss of meaning or purpose in lifeMoney

FeversRelating to GodHousing

Changes in UrinationLoss of faithChildcare

Physical Problems contd…Spiritual/ Religious ConcernsPractical Problems

The distress thermometerThe distress thermometer

=> Validity

Graves et al (2005)Graves et al (2005)

61.6% of patients reported distress at a clinically significant level

22.5% of patients indicated interest in receiving help

30% of distress patients wanted help

Predictors of needing help were Emotional problems, pain, Fatigue

3. Our Study 3. Our Study

Baker-Glen, Mitchell et al (data on file)

MethodologyMethodology

Study I: Baker-Glen, Symonds, Granger “ET Validation”(a) n=129 chemotherapy attendees(b) n=86 chemotherapy f/u

Study II: Sampson, Symonds, Granger “ET Extension”(c) n=250 chemotherapy + late

Study III: Lord, Symonds, Granger “Coping”(d) n=250

Study IV: Mitchell, Symonds, Steward “SMI RCT”(e) n=300

See Gil F, Grassi L, Travado L, Tomamichel M, Gonzalez JR. for the SEPOS Group. Use of distress and depression thermometers to measure psychosocial morbidity among southern European cancer patients. Support Care Cancer, 13: 600–606, 2005

Help – Who Wants Help?Help – Who Wants Help?

20% said they wanted professional help for psychosocial issues.

Only 36% of those distressed on the DT wanted help.

Help – Do They Need It?Help – Do They Need It?

27% had major depression

62% had major or minor depression

88% had some distress (HADS, PHQ, DT)

Are Those Not Wanting Help OK?Are Those Not Wanting Help OK?

41/104 (39%) of decliners had no identifyablecondtion

=> 61% of those refusing help actually have a potentially serious psychosocial condition.

What Kind of Help is Wanted?What Kind of 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% face-to-face psychological support

Help – Who From?Help – Who From?

Nurse specialists (54%)

Family and friends (21%)

Spiritual advisor (8%)

Psychiatrist (4%).

Why Not Needed?Why Not Needed?

“getting help elsewhere” (57%)

“feel well” (41%)

“coping on my own” (31%)

“fear of stigma”, “fear of side effects”, “not likely to be effective for me”, and “don’t like to talk about problems” (all less than 10%)

4. Is Help a Predictor?4. Is Help a Predictor?

Help as a Predictor of Depression?Help as a Predictor of Depression?

0.860.390.880.36Help QQ AloneDSMIV Mj + Minor Depression

0.880.880.990.36Help QQ AND PHQ2DSMIV Mj + Minor Depression

0.920.270.830.47Help QQ AloneDSMIV Major Depression

NPVPPVSpecificitySensitivityPredictorOutcome

6. Future?6. Future?

Can This Be Used Clinically?Can This Be Used Clinically?

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