Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing...

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Coping with Primary Sclerosing Cholangitis Coping with Primary Coping with Primary Sclerosing Cholangitis Sclerosing Cholangitis Adriana R. Vasquez, M.D. Adriana R. Vasquez, M.D. Adriana R. Vasquez, M.D.

Transcript of Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing...

Page 1: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

Coping with Primary Sclerosing Cholangitis

Coping with Primary Coping with Primary Sclerosing CholangitisSclerosing Cholangitis

Adriana R. Vasquez, M.D.Adriana R. Vasquez, M.D.Adriana R. Vasquez, M.D.

Page 2: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

Patient and their family/friends

Caregivers

Patient and their family/friendsPatient and their family/friends

CaregiversCaregivers

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Primary Sclerosing CholangitisPrimary Sclerosing CholangitisPrimary Sclerosing Cholangitis

Chronic illness•

There is no cure

May progress to ESLD requiring liver transplant

A major risk is bile duct cancer•

Young people (30-50s)

The majority are men.

••

Chronic illnessChronic illness••

There is no cureThere is no cure

••

May progress to ESLD requiring liver May progress to ESLD requiring liver transplanttransplant

••

A major risk is bile duct cancerA major risk is bile duct cancer••

Young people (30Young people (30--50s)50s)

••

The majority are men.The majority are men.Mayoclinic.com

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Definition of StressDefinition of StressDefinition of Stress

“Fight-or-flight”

reaction•

It is rapid and automatic switch into “high gear”

••

““FightFight--oror--flightflight””

reactionreaction••

It is rapid and automatic switch into It is rapid and automatic switch into ““high gearhigh gear””

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Source: Adinoff, B., et al. Disturbances of the stress response:

The role of the hypothalamic-pituitary-adrenal HPA axis during alcohol withdrawal and

abstinence. Alcohol Health & Research World 22(1):67–72, 1998.

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Stress response…Stress responseStress response……

Digestive system•

Immune system

Nervous system•

Cardiovascular system

Other systems•

Skin conditions

Asthma

••

Digestive systemDigestive system••

Immune systemImmune system

••

Nervous systemNervous system••

Cardiovascular systemCardiovascular system

••

Other systemsOther systems••

Skin conditionsSkin conditions

••

AsthmaAsthma

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How to cope with StressHow to cope with StressHow to cope with Stress•

Identify your stress triggers

Keep a stress journal.•

Make a list of all the demands on your time and energy for one week.

Improve your time management skills•

Overcome burnout

Take care of yourself.•

Develop friendships at work and outside the office.

Take time off.•

Set limits.

Choose battles wisely.•

Have an outlet.

Seek help.

••

Identify your stress triggersIdentify your stress triggers••

Keep a stress journal.Keep a stress journal.

••

Make a list of all the demands on your time and energy for Make a list of all the demands on your time and energy for one week.one week.

••

Improve your time management skillsImprove your time management skills••

Overcome burnoutOvercome burnout

••

Take care of yourself.Take care of yourself.••

Develop friendships at work and outside the office.Develop friendships at work and outside the office.

••

Take time off.Take time off.••

Set limits.Set limits.

••

Choose battles wisely.Choose battles wisely.••

Have an outlet.Have an outlet.

••

Seek help.Seek help.Mayoclinic.com

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ResilienceResilienceResilience•

Main Entry:

re·sil·ience•

Pronunciation:

\ri-ˈzil-yən(t)s\•

Function:

noun•

Date:

1824 1 :

the capability of a strained body to recover its size

and shape after deformation caused especially by compressive stress

2 :

an ability to recover from or adjust easily to misfortune or change

••

Main Entry: Main Entry: ••

rere··silsil··ienceience

••

Pronunciation: Pronunciation: ••

\\riri--ˈ̍zilzil--yyəən(t)sn(t)s\\

••

Function: Function: ••

nounnoun

••

Date: Date: ••

1824 1824

1 :1 :

the capability of a strained body to recover its size the capability of a strained body to recover its size and shape after deformation caused especially by and shape after deformation caused especially by compressive stresscompressive stress

2 :2 :

an ability to recover from or adjust easily to an ability to recover from or adjust easily to misfortune or changemisfortune or change

Merriam Webster dictionary

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ResilienceResilienceResilience•

Strauss B. Brix C. Fischer S. Leppert K. Fuller J. Roehrig B. Schleussner C. Wendt TG. The influence of resilience on fatigue in cancer patients undergoing radiation therapy (RT). [Journal Article] Journal of Cancer Research & Clinical Oncology. 133(8):511-8, 2007 Aug.

Roy A. Sarchiapone M. Carli V. Low resilience in suicide attempters. [Journal Article] Archives of Suicide Research. 11(3):265-9, 2007.

Hjemdal O. Aune T. Reinfjell T. Stiles TC. Friborg O. Resilience

as a predictor of depressive symptoms: a correlational study with young adolescents. [Journal Article] Clinical Child Psychology & Psychiatry. 12(1):91-104, 2007 Jan.

Thompson CW. Durrant L. Barusch A. Olson L. Fostering coping skills and resilience in Home Enteral Nutrition (HEN) consumers.

[Journal Article] Nutrition in Clinical Practice. 21(6):557-65, 2006 Dec.

Friborg O. Hjemdal O. Rosenvinge JH. Martinussen M. Aslaksen PM. Flaten MA. Resilience as a moderator of pain and stress. [Journal Article. Research Support, Non-U.S. Gov't. Validation Studies] Journal of Psychosomatic Research. 61(2):213-9, 2006 Aug.

••

Strauss B. Brix C. Fischer S. Leppert K. Fuller J. Roehrig B. Strauss B. Brix C. Fischer S. Leppert K. Fuller J. Roehrig B. Schleussner C. Wendt TG. The influence of resilience on fatigue Schleussner C. Wendt TG. The influence of resilience on fatigue in in cancer patients undergoing radiation therapy (RT). [Journal cancer patients undergoing radiation therapy (RT). [Journal Article] Article] Journal of Cancer Research & Clinical Oncology. Journal of Cancer Research & Clinical Oncology. 133(8):511133(8):511--8, 2007 Aug.8, 2007 Aug.

••

Roy A. Sarchiapone M. Carli V. Low resilience in suicide Roy A. Sarchiapone M. Carli V. Low resilience in suicide attempters. [Journal Article] attempters. [Journal Article] Archives of Suicide Research. Archives of Suicide Research. 11(3):26511(3):265--9, 2007.9, 2007.

••

Hjemdal O. Aune T. Reinfjell T. Stiles TC. Friborg O. ResilienceHjemdal O. Aune T. Reinfjell T. Stiles TC. Friborg O. Resilience

as a as a predictor of depressive symptoms: a correlational study with predictor of depressive symptoms: a correlational study with young adolescents. [Journal Article] young adolescents. [Journal Article] Clinical Child Psychology & Clinical Child Psychology & Psychiatry. 12(1):91Psychiatry. 12(1):91--104, 2007 Jan.104, 2007 Jan.

••

Thompson CW. Durrant L. Barusch A. Olson L. Fostering coping Thompson CW. Durrant L. Barusch A. Olson L. Fostering coping skills and resilience in Home Enteral Nutrition (HEN) consumers.skills and resilience in Home Enteral Nutrition (HEN) consumers.

[Journal Article] [Journal Article] Nutrition in Clinical Practice. 21(6):557Nutrition in Clinical Practice. 21(6):557--65, 2006 65, 2006 Dec.Dec.

••

Friborg O. Hjemdal O. Rosenvinge JH. Martinussen M. Aslaksen Friborg O. Hjemdal O. Rosenvinge JH. Martinussen M. Aslaksen PM. Flaten MA. Resilience as a moderator of pain and stress. PM. Flaten MA. Resilience as a moderator of pain and stress. [Journal Article. Research Support, Non[Journal Article. Research Support, Non--U.S. Gov't. Validation U.S. Gov't. Validation Studies] Studies] Journal of Psychosomatic Research. 61(2):213Journal of Psychosomatic Research. 61(2):213--9, 2006 9, 2006 Aug.Aug.

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Content of the Connor-Davidson Resilience Scale

Content of the ConnorContent of the Connor--Davidson Davidson Resilience ScaleResilience Scale

Able to adapt to change•

Close and secure relationships•

Sometimes fate or God can help•

Can deal with whatever comes•

Past success gives confidence for new challenges

See the humorous side of things•

Coping with stress strengthens•

Tend to bounce back after illness or hardship

Things happen for a reason•

Best effort no matter what•

You can achieve your goals•

When things look hopeless, I don’t give up

••

Able to adapt to changeAble to adapt to change••

Close and secure relationshipsClose and secure relationships••

Sometimes fate or God can helpSometimes fate or God can help••

Can deal with whatever comesCan deal with whatever comes••

Past success gives confidence for Past success gives confidence for new challengesnew challenges

••

See the humorous side of thingsSee the humorous side of things••

Coping with stress strengthensCoping with stress strengthens••

Tend to bounce back after illness Tend to bounce back after illness or hardshipor hardship

••

Things happen for a reasonThings happen for a reason••

Best effort no matter whatBest effort no matter what••

You can achieve your goalsYou can achieve your goals••

When things look hopeless, I When things look hopeless, I dondon’’t give upt give up

Know where to turn for help•

Under pressure, focus and think clearly

Prefer to take the lead in problem solving

Not easily discouraged by failure•

Think of self as strong person•

Make unpopular or difficult decisions•

Can handle unpleasant feelings•

Have to act on a hunch•

Strong sense of purpose•

In control of your life•

I like challenges•

You work to attain your goals•

Pride in your achievements

••

Know where to turn for helpKnow where to turn for help••

Under pressure, focus and think Under pressure, focus and think clearlyclearly

••

Prefer to take the lead in problem Prefer to take the lead in problem solvingsolving

••

Not easily discouraged by failureNot easily discouraged by failure••

Think of self as strong personThink of self as strong person••

Make unpopular or difficult decisionsMake unpopular or difficult decisions••

Can handle unpleasant feelingsCan handle unpleasant feelings••

Have to act on a hunchHave to act on a hunch••

Strong sense of purposeStrong sense of purpose••

In control of your lifeIn control of your life••

I like challengesI like challenges••

You work to attain your goalsYou work to attain your goals••

Pride in your achievementsPride in your achievements

Development of a new resilience scale: The Connnor-Davidson Resilience Scale (CD-RISC). Depression and Anxiety 18:76-82(2003)

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PsychiatryPsychiatryPsychiatry

Psychiatrists•

General

Psychosomatic medicineAcademy of psychosomatic medicine

http://www.apm.org/

••

PsychiatristsPsychiatrists••

GeneralGeneral

••

Psychosomatic medicinePsychosomatic medicineAcademy of psychosomatic Academy of psychosomatic medicinemedicinehttp://www.apm.org/http://www.apm.org/

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Adjustment disordersAdjustment disordersAdjustment disordersEmotional symptoms of

adjustment disorders

Sadness Hopelessness Lack of enjoyment Crying spells Nervousness Thoughts of suicide Anxiety Worry Desperation Trouble sleeping Difficulty concentrating Feeling overwhelmed

Emotional symptoms of Emotional symptoms of adjustment disordersadjustment disorders

Sadness Sadness Hopelessness Hopelessness Lack of enjoyment Lack of enjoyment Crying spells Crying spells Nervousness Nervousness Thoughts of suicide Thoughts of suicide Anxiety Anxiety Worry Worry Desperation Desperation Trouble sleeping Trouble sleeping Difficulty concentrating Difficulty concentrating Feeling overwhelmed Feeling overwhelmed

Behavioral symptoms of adjustment disorders

Fighting •

Reckless driving

Ignoring bills •

Avoiding family or friends

Poor school or work performance

Skipping school •

Vandalism

Behavioral symptoms of Behavioral symptoms of adjustment disordersadjustment disorders

••

Fighting Fighting ••

Reckless driving Reckless driving

••

Ignoring bills Ignoring bills ••

Avoiding family or friends Avoiding family or friends

••

Poor school or work Poor school or work performance performance

••

Skipping school Skipping school ••

Vandalism Vandalism

Mayoclinic.com

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Serotonin5HT and NorepinephrineNE in the brain

Prefrontal Cortex

Raphe Nuclei (5-HT source)Locus Ceruleus (NE Source)

Limbic System

Cooper JR, Bloom FE. The Biochemical Basis of Neuropharmacology. 1996.

Page 14: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

Spectrum of Symptoms in DepressionSpectrum of Symptoms in DepressionSpectrum of Symptoms in Depression

Emotional SymptomsSadness, tearfulness

Loss of interest

Anxiety, irritability

Hopelessness

Concentration difficulties

Guilt

Suicidal ideation

Emotional SymptomsEmotional SymptomsSadness, tearfulnessSadness, tearfulness

Loss of interestLoss of interest

Anxiety, irritabilityAnxiety, irritability

HopelessnessHopelessness

Concentration difficultiesConcentration difficulties

GuiltGuilt

Suicidal ideationSuicidal ideation

Physical SymptomsTiredness, fatigueSleep disturbancesHeadachesPsychomotor agitation,

retardation GI disturbances

Appetite ChangesBody aches and pain

Physical SymptomsPhysical SymptomsTiredness, fatigueTiredness, fatigueSleep disturbancesSleep disturbancesHeadachesHeadachesPsychomotor agitation, Psychomotor agitation,

retardationretardationGI disturbancesGI disturbancesAppetite ChangesAppetite ChangesBody aches and painBody aches and pain

DSM-IV-TR (2000). Washington, D.C.; American Psychiatric Association

Page 15: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

In a New England Journal of Medicine study, 69% of diagnosed depressed patients reported unexplained physical symptoms as their chief compliant1

Simon GE, et al. N Engl J Med. 1999;341(18):1329-1335.

N = 1146 Primary care patients with major depression

The physical presentation

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1. Kessler RC, et al. JAMA. 2003;289:3095-3105.2. WHO World Health Report 2001.3.

National Vital Statistics Report; 2000.

Depression Is a Major Public Health Concern

Depression Is a Major Depression Is a Major Public Health ConcernPublic Health Concern

>30 million adults (lifetime prevalence) in the United States1

4th greatest cause of global illness burden (morbidity + mortality)2

Suicide is the 8th leading cause of death in the United States3

Causing more deaths annually than HIV and hepatitis combined3

••

>30 million adults (lifetime prevalence) in >30 million adults (lifetime prevalence) in the United Statesthe United States11

••

4th greatest cause of global illness burden 4th greatest cause of global illness burden (morbidity + mortality)(morbidity + mortality)22

••

Suicide is the 8th leading cause of death in Suicide is the 8th leading cause of death in the United Statesthe United States33

••

Causing more deaths annually than HIV Causing more deaths annually than HIV and hepatitis combinedand hepatitis combined33

Page 17: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

SuicideSuicideSuicide

Suicidal thoughts•

Abuse/violence

Information on suicide•

Economic problems

Information on mental health/ illness

Sexual orientation issues

Post disaster needs

••

Suicidal thoughtsSuicidal thoughts••

Abuse/violenceAbuse/violence

••

Information on suicideInformation on suicide••

Economic problems Economic problems

••

Information on mental Information on mental health/ illnesshealth/ illness

••

Sexual orientation Sexual orientation issuesissues

••

Post disaster needsPost disaster needs

Homelessness issues•

Substance abuse/addiction

Physical illness•

To help a friend or loved one

Loneliness•

Relationship problems Family problems

••

Homelessness issuesHomelessness issues••

Substance abuse/addictionSubstance abuse/addiction

••

Physical illnessPhysical illness••

To help a friend or loved one To help a friend or loved one

••

LonelinessLoneliness••

Relationship problems Relationship problems Family problemsFamily problems

http://www.suicidepreventionlifeline.org/

You can reach the Lifeline by dialing You can reach the Lifeline by dialing 11--800800--273273--TALK (8255). Although TALK (8255). Although suicide prevention is our primary suicide prevention is our primary mission, people call the Lifeline for mission, people call the Lifeline for many reasons:many reasons:

Page 18: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

What Is

Adequate Treatment?What What IsIs

Adequate Treatment?Adequate Treatment?•

Remission of symptoms has been the standard goal for more than a decade1-4

Resolution of emotional and physical symptoms5,6

Restoration of full capacity for functioning5,6

Return to work•

Resume hobbies/personal interests

Restore personal relationships

••

Remission of symptoms has been the Remission of symptoms has been the standard goal for more than a decadestandard goal for more than a decade11--44

••

Resolution of emotional and physical Resolution of emotional and physical symptomssymptoms5,65,6

••

Restoration of full capacity for Restoration of full capacity for functioningfunctioning5,65,6

••

Return to workReturn to work••

Resume hobbies/personal interestsResume hobbies/personal interests

••

Restore personal relationships Restore personal relationships 1.

Clinical Practice Guideline, 5: Depression in Primary Care, 2: Treatment of Major Depression; 1993. AHCPR publication 93-0551.2.

American Psychiatric Association. Am J Psychiatry. 2000;157(4 suppl):1-45.3.

Anderson IM, et al. J Psychopharmacol. 2000;14:3-20. 4.

Reesal RT, Lam RW. Can J Psychiatry. 2001;46(suppl 1):21S-28S.5.

DSM-IV-TR™. Washington, DC: American Psychiatric Association; 2000. 6.

Rush AJ, Trivedi MH. Psychiatr Ann. 1995;25:704-705, 709.

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When to ask for professional helpWhen to ask for professional helpWhen to ask for professional help

Major Depression

Anxiety Disorders

Alcohol and drug addiction

Suicidal thoughts and behavior

••

Major DepressionMajor Depression

••

Anxiety DisordersAnxiety Disorders

••

Alcohol and drug addictionAlcohol and drug addiction

••

Suicidal thoughts and behaviorSuicidal thoughts and behavior

Any time………..

Page 20: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

Alcohol…How much is “too much”AlcoholAlcohol……How much is How much is ““too muchtoo much””Drinking becomes too much when it causes or elevates the risk for alcohol-related problems or complicates the management of other health problems. Men who drink 5 0r more standard drinks in a day (or 15 or more per week) and women who drink 4 or more in a day (or 8 or more per week) are at increased risk for alcohol-related problems

Drinking becomes too much when it Drinking becomes too much when it causes or elevates the risk for causes or elevates the risk for alcoholalcohol--related problems or related problems or complicates the management of complicates the management of other health problems. Men who other health problems. Men who drink 5 0r more standard drinks in a drink 5 0r more standard drinks in a day (or 15 or more per week) and day (or 15 or more per week) and women who drink 4 or more in a day women who drink 4 or more in a day (or 8 or more per week) are at (or 8 or more per week) are at increased risk for alcoholincreased risk for alcohol--related related problemsproblems

Dawson DA, Grant BF, Li TK. Quantifying the risks associated witDawson DA, Grant BF, Li TK. Quantifying the risks associated with h exceeding recommended drinking limits. Alcohol Clin Exp Res. 29exceeding recommended drinking limits. Alcohol Clin Exp Res. 29(5):902(5):902--

908, 2005908, 2005

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Substance Abuse and Mental Health Services Administration

Substance Abuse and Mental Health Substance Abuse and Mental Health Services AdministrationServices Administration

http://www.samhsa.gov/http://www.samhsa.gov/http://www.samhsa.gov/

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Who to ask for helpWho to ask for helpWho to ask for helpPrimary Care Physician

Hepatologist

Mental Health Care Providers•Individual and Group Psychotherapy

PsychologistsPsychotherapistsSocial Workers

Psychiatric nursesMental health counselors

Marriage and family therapistsPastoral counselors

Psychoanalysts

•Medication Management Psychiatrists

Primary Care PhysicianPrimary Care PhysicianHepatologistHepatologist

Mental Health Care ProvidersMental Health Care Providers•• Individual and Group PsychotherapyIndividual and Group Psychotherapy

PsychologistsPsychotherapistsSocial Workers

Psychiatric nursesMental health counselors

Marriage and family therapistsPastoral counselors

Psychoanalysts

••Medication Management Medication Management PsychiatristsPsychiatrists

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ResourcesResourcesResources

Support Groups••

Support GroupsSupport Groups

Page 24: Coping with Primary Sclerosing Cholangitis · Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis • Chronic illness • There is no cure • May progress to ESLD requiring

Thank you!Thank you!Thank you!