The use of the modified Distress Thermometer in identifying and

The use of the modified Distress Thermometer in identifying and managing distress amongst AYA cancer patients

Pandora Patterson

CanTeen Australia University of Sydney

AYA Psychosocial Support Needs*

Specific needs

•  Psychosocial support needs differ from other pa7ents

•  Biological, cogni7ve, emo7onal and social skills s7ll developing

•  No longer a child, not yet an adult – dis7nct developmental period

Physical and sexual maturity Brain and emo7onal development Importance of rela7onships with peers and roman7c partners Establishing a different rela7onship with parents Establishing independence Iden7ty explora7on and forma7on Exploring study / work op7ons Future plans and an7cipa7ng one’s life trajectory Mental health problems account for around 50% of the burden of disease for young people; incidence of mental illness in young people is the highest of any age group.

YOUTH CANCER SERVICE

Standardised Screening, Assessment, & Care Planning for AYAs

•  Absence of psychosocial tools available for the AYA cancer popula7on (1)

•  Age based measures are crucial to best prac7ce care

•  Preventa7ve approach

•  iden7fy pa7ents at risk

•  monitor progressive coping

•  iden7fy areas of need and addresses changing needs

•  Allow objec7ve measurement of distress and comparisons over 7me

•  Promote robust research

•  Support coping during treatment and promote healthy survivorship

•  Clinically-‐recognised minimum standard of care


1.Wakefield CE, Patterson P, McDonald FEJ, Wilson HL, Davis E, Sansom-Daly UM. Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments. Clinical Oncology in Adolescents and Young Adults. 2013;3:13-27.

AYA Oncology Psychosocial Care Manual The review process

•  Review of available scales, assessments and care plans

•  Na7onal and Interna7onal experts invited to share tools in use

The development process

•  AYA pa7ent working group

•  Working group of Australia’s leading AYA clinicians

Ongoing consulta7on and revision

•  Clinical working group

First available AYA oncology specific tools and assessments


AYA Oncology Psychosocial Care Pathway*


AYA Oncology Screening Tool

•  A well-‐developed yet not validated AYA-‐specific measure would be of greater clinical usefulness than using a validated measure that was not appropriate for the age group or seYng (2)

•  DT best measure; modifica7on of problem checklist

•  The DT and problem checklist (PCL) were developed for adult cancer popula7ons and have only been validated in those popula7ons. The cut-‐off used for the DT is based on studies with older pa7ents.

•  Further valida7on will lead to improvements


2.Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliat Support Care. 2013.

*Distress: “a mul7factorial unpleasant emo7onal experience of a psychological (cogni7ve, behavioural, emo7onal), social and/or spiritual nature that may interfere with the

ability to cope effec7vely with cancer, its physical symptoms and its

treatment.” (NCCN)

Distress Thermometer

Areas of Concern

Informa7on Provision

Care Plan Development

Date

Signatures

AYA DT Research Project Aims

Primary aim

The primary aim is the valida&on and clinical u&lity of the screening tool for AYA cancer pa7ents;

specifically, to determine appropriate cut-‐offs for clinical use, assess the clinical u7lity (appropriateness,

prac7cability, and acceptability) of the tools, and confirm the content validity of the checklist.

Secondary aims

Secondary aims include: measuring prevalence and predictors (demographic, cancer, health literacy, family

func7oning, and spirituality variables) of distress; examining service responsiveness; and conduc7ng

interna&onal comparisons for prevalence, and predictors of distress and psychosocial concerns in AYA

pa7ents.


Cut-off value and PCL content

•  To determine an appropriate cut-‐off value, comparisons are made between responses on exis7ng validated measures and those on the DT

•  HADS and K10

•  Content of the PCL will be evaluated by reviewing which items are selected and addi7onal items raised by pa7ents


Prevalence and predictors of distress*

•  This study will also enable prevalence of distress to be determined and variables impac7ng on distress levels

•  Prevalence data and a representa7ve sample

•  Predictors •  treatment status (Dyson et al., 2012)

•  cancer type (Neville et al., 1996)

•  age (Kim et al., 2013)

•  involvement with school or work (Kwak et al., 2012)

•  economic status (Kim et al., 2013)

•  levels of support (Hatcher et al., 2012)

•  health literacy (Koay et al., 2012; McDonald et al., 2012)

•  spirituality (Visser et al., 2010)

•  family func7oning (Edwards et al., 2005) YOUTH CANCER SERVICE

Clinical utility*

•  Examined from both pa7ent and clinician perspec7ves •  Clinical u7lity framework (3)

•  Appropriateness – relevance and effec7veness of tool; fiYng in to exis7ng processes •  Prac7cability – ease of instruc7ons •  Acceptability – sa7sfac7on with the tool and process


3.Smart A. A multi-dimensional model of clinical utility. International Journal for Quality in Health Care. 2006;18(5):377-82.

Service responsiveness*

Distress screening programs require three components to be effec7ve (4)

1.  use of a screening tool

2.  triage to services

3.  quality treatments

While this study will not be able to examine the quality of support and services AYAs are

referred to directly, we will assess service responsiveness by examining responses to referrals

and pa7ent sa7sfac7on.


4.Carlson LE. Screening alone is not enough: The importance of appropriate triage, referral, and evidence-based treatment of distress and common problems. Journal of Clinical Oncology. 2013;31(29):3616-7.

International Considerations*

Distress screening for the AYA cancer popula7on is being considered for implementa7on as standard prac7ce interna7onally and there are benefits in developing a consistent interna7onal approach.


e: [email protected] t: @PandoraP2

Documents

The use of the modified Distress Thermometer in identifying and