psychosocial distress management

Psychosocial Distress Management at the Robert H. Lurie Comprehensive Cancer Center

of Northwestern University

Nan Rothrock, PhDDepartment of Medical Social Sciences

Northwestern University

Agenda

1. Guidelines for psychosocial distress screening

2. Barriers to screening

3. Pilot project at Lurie Comprehensive Cancer Center

4. Lessons learned

DistressA multifactorial unpleasant emotional experience of a psychological cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.

National Comprehensive Cancer Network. NCCN Distress Management Guidelines version 1. 2011.

Increasing Attention on Screening for Psychosocial Distress in Cancer

• Institute of Medicine’s Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2007)– Importance of distress screening – Importance of addressing psychosocial health in

quality cancer care• NCCN

– “Distress should be recognized, monitored, documented, and treated promptly at all stages of the disease and in all settings”

National Comprehensive Cancer Network. NCCN Distress Management Guidelines version 1. 2011.

Commission on Cancer

• American College of Surgeons (ACoS) Commission on Cancer (CoC) 2012 Cancer Program Standards

• “The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer”

• Oversight by psychosocial representative on cancer committee

CoC Requirements

• Minimum frequency – once per pivotal medical visit (eg, diagnosis, transitions in treatment, transitions off treatment)

• Mode of assessment determined by program

• Preference for standardized, validated tools with established clinical cutoffs

CoC Requirement (cont.)

• Moderate/severe distress – “Identify and examine the psychological, behavioral,

and social problems of patients that interfere with their ability to participate fully in their health care and manage their illness and its consequences”

– After identifying needs, link to appropriate psychosocial services on site or by referral

• Documentation in medical record (screening, referral/provision of care, follow-up)

IOM Report. 2007.

HOW?

Barriers

1. How do I measure distress?2. How do I know what level of distress

warrants follow-up? 3. How do I get that information to someone

who can do something about it?

Measurement

• MANY distress measures (Distress Thermometer, Hospital Anxiety and Depression Scale [HADS], Patient Health Questionnaire [PHQ]-9, etc)

Single-Item Distress Thermometer

• Quick, easy, but not always sufficient

Butt Z, et al. J Pain Symptom Manage. 2007; 35:20-30.

Screening Cutoff = 5

Sensitivity Specificity

Anxiety .85 .78

Depression .63 .69

Measurement

• Ideal measure: brief, precise, covers relevant issues in cancer

• How can you be brief AND comprehensive?– Computer Adaptive Tests (CATs)!

Physical Functioning Item Bank

Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500

• Are you able to run 5 miles?• Are you able to run or jog for 2 miles?• Are you able to walk a block on flat ground?• Are you able to walk from one room to another?• Are you able to stand without losing your balance for 1 minute?• Are you able to get in and out of bed?

• NIH-funded initiative to develop item banks for patient-reported outcomes (eg, fatigue, depression, pain, sexual function, perceived cognitive function)

• Use across chronic conditions• Can be administered as CATs or short forms• Scores can be linked to other existing

measures• Online software (Assessment Center) can

administer CATs to patients securely

National Institutes of Health. www.nihpromis.org.

PROMISPatient-Reported Outcome Measurement Information System

Cutpoints

• Established cutpoints (within normal limits, mild, moderate, severe)

• Based on panels of clinical experts• Severe category warrants messaging at Lurie

Getting the Right Info to the Right People

1. Integration into electronic health record- More comprehensive system

2. Messaging to appropriate clinician (oncologist vs social worker)

- Improve daily workflow and time management

Distress Screening at Lurie

• Patients access Epic MyChart (patient portal)• Seamlessly navigated to Assessment Center• Patient fills out measures on Assessment

Center• Scores pushed into Epic under Other Orders• In-basket message when results are in Severe

category or patient identifies need

Measures

PROMIS CATs• Depression• Anxiety• Fatigue• Pain interference• Physical function

Discipline-Specific • Social work needs• Informational needs• Nutritional status

• Modified Patient-Generated Subjective Global Assessment (PG-SGA)

~ 40 questions

In-Clinic Assessment

Sample Depression Question

Sample Social Work Needs Question

Pain, fatigue, physical function

MD/RN messaged when severe

Depression, anxiety

1) MD, RN messaged when severe2) Psychology, social work copied to initiate consult

Practical, financial concerns

Social worker sent message with list of needs expressed by patient to initiate consult

Screening Triage Algorithm

Provider Messaging: Symptom Reports

• Message provides total score, range, and patient’s answers– The following items contributed to a score of

Severe – In the past 7 days:

• “I felt worried.” – Often• “I felt frightened.” – Sometimes

www.cancer.northwestern.edu/support

Psychosocial Resources

Pilot Tests

• Phase 1: Pilot administration via iPad• Phase 2: Administer via home-based

assessment and iPad with improved usability• Phase 3: Administer per clinical practice

Phase 1: Usability of iPad Assessment

• 12 Gynecologic oncology patients• Median age = 61.5 (range, 34-73)• Administration approximately 10 minutes

(range, 8-16 minutes)• 20% required assistance• 12/12 patients would complete at every MDV• Sample feedback: Font too small

Phase 2: Real-Time Workflow in Clinic

• N = 11• Median age = 54 (range, 35-76)• Mean 1.6 minute to distribute iPad and check-in

patient• Administration 10.7 minutes (range, 6-22 minutes)• 64% complete in waiting room; 27% finish in exam

room• 18% required tech assistance (Internet connection)

Patient Feedback

Very Easy Easy Hard Very Hard012345678

7

3

Completing this assessment was:

Not at all A little bit Somewhat Very much0

2

4

6

8

10

12

10

Were the questions on this survey too personal?

Not at all A little bit Somewhat Very much0

2

4

6

8

10

2

8

Were the questions easy to un-derstand?

Patient Feedback

80%, 8

20%, 2

Did you find that the questions were meaningful to you?

Yes No

Not at all A little bit Somewhat Very much0

2

4

6

8

1 2

7

Did the survey ask questions about aspects of your health and well-be-

ing that are important to you?

Not at all A little bit Somewhat Very much01234567

4

6

Do you think it’s important for your medical team to know your results

from these surveys?

Patient Feedback

40%, 4

10%, 1

50%, 5

Would you prefer to complete the surveys at home or in the clinic?

Home

Clinic

No preference

Not at all A little bit Somewhat Very much012345

12

43

Do you think your medical team will be able to provide you with better care by having results from your

survey?

Yes No0

2

4

6

8

10

12

10

Did the surveys take too long to do?

Patient Feedback

90%, 9

10%, 1

Would you be willing to complete the surveys before each doctor’s visit?

YesNo

20%, 2

80%, 8

Did you have technical problems (with MyChart or the survey) when

completing the survey?

Yes No

90%, 9

10%, 1

Did you remember your MyChart password?

YesNo

10%, 1

90%, 9

Did you have trouble locating the survey in MyChart?

YesNo

Clinic Staff Feedback

29%, 2

57%, 4

14%, 1

Did the patient have trouble logging into the assessment?

YesNoUnknown

28%, 2

29%, 2

43%, 3

Did the patient ask for help when completing the assessment?

Yes

No

Unknown

What Have We Learned?

Lessons Learned

• Integration of software systems takes longer than you think it should– Clinicians, patients, operations staff, and software

vendors have competing urgencies requiring prioritization

• Each group has own language and culture– And not all members of a group are alike

• Patients are not as scared of technology as some may think

• Logistic issues are critical and should be considered at the outset of an initiative

Next Steps

• Implementation in clinic for all new patients receiving treatment at center (not 2nd opinions)

• Set up schedule for follow-up assessments (eg, monthly)

• Later -> customized assessment per provider (eg, incorporate neuropathy-specific measure for taxanes)

Thank You!

David CellaLynne WagnerLaura AbrahamKile KingRichard GershonJulian SchinkDarren KaiserRohini BahlI. SyedSteven Rosen

Mary Jo GradenVirginia NothnagelMary O’ConnorShalini PatelMichael Bass

Funding provided by the Lurie Comprehensive

Cancer Center

Resources:www.lurie.northwestern.eduwww.mss.northwestern.eduwww.nihpromis.org

Acknowledgments