Download Document - Pediatric Dermatology for the Practitioner Conference

Motivating Patients and Families:
Recognizing the Burden and
Approaches to Care and Support
Jennifer LeBovidge, PhD
Psychologist, Atopic Dermatitis Center, Boston Children’s Hospital
Assistant Professor in Psychology, Harvard Medical School
Sarah Chamlin, MD
Pediatric Dermatologist, Ann and Robert H Lurie Children’s Hospital
of Chicago, Northwestern Feinberg School of Medicine
Goal for Workshop
• Recognize the burden of AD
• Develop approach for care and support for
areas of greatest burden
• Base approach on qualitative and
quantitative QoL data, patient and
provider opinion
• Draft concise and practical patient/family
and PCP support materials
Quality of Life Scales for Children
with AD and Their Families
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Children’s Dermatology Life Quality Index (CDLQI)
Childhood Atopic Dermatitis Impact Scale (CADIS)
Dermatitis Family Impact Questionnaire (DFI)
Infants’ dermatitis quality of life index (IDQoL)
Childhood Impact of Atopic Dermatitis (CIAD)
DISABKIDS Atopic Dermatitis Module (DISABKIDS-ADM)
• Heinl, D., et al. (2017), Measurement properties of quality-of-life
measurement instruments for infants, children and adolescents with
eczema: a systematic review. Br J Dermatol. doi:10.1111/bjd.14966
• www.cardiff.ac.uk/dermatology/quality-of-life
QoL Effects on Young Children with AD
Chamlin et al. Pediatrics 2004;114:607-611
IF THERE WAS ONE WORD TO DESCRIBE ECZEMA,
IT WOULD BE…
NEA Conference,
child and teen
sessions, 2014
Impact of Itch
I can’t concentrate in school.
Once she starts, it’s like she’s
in a trance…
Bedtime is a nightmare for me.
She’s hiding from us to scratch!
By the end of a car ride,
he’s destroyed his skin!
THEY DON’T UNDERSTAND I CAN’T JUST STOP!!!
Itching/scratching has negative impact on quality of life
Metz et al., 2013; Chamlin et al., 2004; Weisshar et al., 2008
OTHER KIDS’ REACTIONS
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“What’s that stuff on you?”
“Where’d you get it from?”
“What is that?”
“Is it contagious?”
“Ew!”
“Hey, what’s wrong with your skin?”
They run away
They won’t hold hands
The looks are worse than the words
NEA Conference,
child and teen
sessions, 2014
Eczema and Psychosocial Stress
are Mutually Reinforcing
I can’t help
scratching!
Stress
Itch/
flare
I don’t
understand this
homework!
I don’t want
a time out!
Big game
tomorrow!
Scratching
Itch/flare
Kids are asking
what’s wrong
with my skin!
Damage
Inflammation
My bath
will sting!
What QoL effects are most
important?
Where should we focus our efforts
to improve QoL through TPE?
Ideas?
Proposed TPE Priorities
• Itch
• Sleep
• Self-esteem/relational skills
• Parent steroid phobia/fear leading to poor
compliance
Itch
Start with a Team Approach
• Externalize the problem (non-blaming approach)
• Work as a team to make “the itchies” go away
• Think about language (“it looks like your eczema is
bothering you” vs. “Stop scratching”)
• Focus on what you WANT kids to do (e.g., put on cream)
vs. what you DON’T want them to do (e.g., scratch)
• Increases children’s sense of control
• Opportunities for parental praise
• “Don’t scratch!” increases stress and may increase the
behavior!
Practical Strategies and
Resources to Cope with Itch
Appropriate skincare, bath (with praise for cooperation)
“Competing” sensory experiences (ice pack, cool cloth)
Hands-on activities (stress ball, drawing, Legos, video game)
Fiddle toys handy for times hands not busy – car ride, TV
Special toys during diaper changes (babies scratch when
clothes off)
• Cover skin (wraps, sleepsuits, gloves, wristbands, etc)
• Educate/normalize the link between eczema and stress
• Relaxation strategies to manage stress/itch and refocus
attention– deep breathing, guided imagery, meditation,
yoga (Chida, 2007; Bae et al., 2012; Ehlers, 1995)
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Resources: Scratching and Skin-Picking
• Fidgets/fiddle toys: https://store.trich.org
• Educational/Self-Help Resources:
• Workbook for kids: What to Do When Bad Habits Take Hold: A
Kid’s Guide to Overcoming Nail Biting and More (cognitivebehavioral techniques, ages 6 to 12)
• Website and book for adults: Skin Deep: A Mind/Body Program
for Healthy Skin (Ted Grossbart, PhD), www.grossbart.com
• The TLC Foundation for Body-Focused Behaviors: www.bfrb.org,
resources for skin picking
• Sleepsuits, etc (although cotton pj’s, socks work too)
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AD RescueWear
Scratch Me Not
The Eczema Company
Halo Comfort Luxe
Snuggle Paws
Resources: Relaxation and
Meditation Apps and Websites
• Relaxation and meditation resources/apps
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Cosmic Yoga (youtube video for younger kids)
Sesame Street Belly Breathe (video on youtube)
www.stressfreekids.com
www.relaxkids.com
MyCalmBeat
Breathe2Relax
Headspace
Insight Timer
Cleveland Clinic Stress Meditations
Managing Itch
at School
NEA Tools for School –
guides for parents and
educators
nationaleczema.org
Incentive Programs
• Keep it simple and immediate for younger children
• Small, daily rewards (e.g., extra book at bedtime)
• Larger weekly or monthly goals
• Start with achievable goals
• freeprintablebehaviorcharts.com
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Sleep
Behavioral Recommendations
for Sleep
• Good sleep hygiene (consistent schedule, relaxing routine,
screen time limits, dark/cool environment, watch caffeine)
• Relaxation strategies for sleep onset
• Wraps/gloves/socks/sleep suits to block scratching
• Cool cloth to soothe skin if itchy
• Easy access to moisturizer (older children, adults)
• Behavioral interventions to modify sleep association (referral
to sleep specialist or psychologist as needed)
• Reward/sticker charts, tokens, sleep fairy
Mindell at al. Behavioral Treatment of Bedtime Problems and Night
Wakings in Infants and Young Children. Sleep 2006;29:1263-1276.
Resources
• Apps for sleep onset
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Sleep Well! (includes child-friendly education)
iSleep Easy Meditations for Restful Sleep
Gaze HD Beach Lite (calming sounds, music)
RelaxMelodies
Relax and Rest Guided Meditations
• Books for Parents
• Sleeping Through the Night, Revised Ed.: How Infants, Toddlers,
and Their Parents Can Get a Good Night's Sleep, Jodi Mindell, PhD
• Take Charge of Your Child's Sleep: The All-in-One Resource for
Solving Sleep Problems in Kids and Teens, Jodi Mindell, PhD
• Information about sleep, good sleep hygeine, treating sleep
disorders: https://sleepfoundation.org
Self-Esteem/Emotional
Impact/Relational Skills
Manage Stress and
Build Self-Esteem
• ASK about relationships, what other kids say/ask about
eczema, teasing/bullying, mood, anything eczema gets in
the way of doing, what they do for fun, what they do well
• Listen, validate, normalize concerns
• Discuss the link between stress and AD
• Build areas of skill/interest to promote self-esteem
• Role-play language to talk to other kids about eczema
• Teach strategies to handle teasing/bullying
• Provide peer support resources (camp, groups)
Answering Peers’ Questions
• Simple, matter-of-fact information
• Give it a name (eczema)
• It’s just dry skin, it’s like an allergy
• You can’t catch it
• Explain, reassure, distract technique
• You/child set the tone
• “No big deal,” not anyone’s fault
• Peers will pick up on cues (if secretive, ashamed)
• Role-play responses to peers’ questions
• Consider classroom teaching about eczema
• Identify a point-person at school (counselor, nurse)
• Work with school to address issues of teasing
Patient Support Resources
• In-person/online support: NEA www.nationaleczema.org
• Camps for children with skin disease, www.aad.org
• Children’s literature about eczema
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We Have Eczema Too – younger children (out of print?)
I Have Eczema, Jen Greatsinger & Lisa Crosby
Under My Skin– younger and school-aged children (out of print?)
The Case of…Itch and Rash, Erika Kimble (older school-age children)
• Children’s literature to promote self-esteem
• It’s OK to Be Different, Todd Parr (3-6 years)
• I'm Gonna Like Me: Letting Off a Little Self-Esteem, Jamie Lee Curtis (4-8
years)
• Being Me: A Kid's Guide to Boosting Confidence and Self-Esteem, Wendy
Moss, PhD, 8-13 years
• Tips to identify/prevent/address bullying: www.stopbullying.gov
Time Management
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You can’t cover it all in a 15 minute visit
Concise electronic handout materials
Highlight issues most pertinent for each patient
Utilize NEA as a keeper of electronic documents
When to Consider
Additional Support?
• Doing maximal therapy, but it’s not working
• Is stress/anxiety leading to scratching and skin picking?
• Is anxiety/conflict adversely impacting skincare?
• Is depression impacting motivation for skincare?
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Child in distress (mood, anxiety)
Limited participation in social/extracurricular activities
History of bullying
Learning/academic concerns
Skin is improved, but sleep problems continue
Concerns with child development, communication, social
interactions
Who Can Help?
• Start with pediatrician (developmental concerns/EI
referral, behavior management, mental health referral)
• Reach out to your state psychological association
• Psychologists/mental health professionals
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Stress management (cognitive-behavioral strategies)
Itch (relaxation, biofeedback, habit reversal)
Adherence
Behavioral sleep interventions
Self-esteem, depression, anxiety
• Psychiatric evaluation for medication management
• Sleep specialist
• Developmental specialist
Adherence
Patient-Centered Communication
• Assessment of patient/caregiver knowledge, concerns,
past experiences, barriers to adherence
• Active listening, empathy, encouragement
• Normalize/validate concerns – families are not alone
• Open the door to talking about barriers
• Open-ended questions
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What factors worsen or improve your disease?
How is the treatment going? Concerns about medications?
What gets in the way of treatment? Parts miss most?
What are your goals for today’s visit?
• Shared decision making around goals/management
Barbarot et al., 2013; Tan et al., 2016
Practical Tips: Parent Skincare
Techniques and Medication Use
• Have parent bring meds to clinic, check
expiration dates/last fill
• Show parent how much to apply using an
emollient sample
• Reassure about application safety and
acknowledge parent discomfort with topical
steroids
• “I know you have to go our of you comfort zone to
use this.”
• Other ideas?
Involving Kids and
Teens in Skincare
• Provide developmentally appropriate education
• Bath as “drink for thirsty skin”
• Bleach baths like chlorine in pool
• Drawing of brick and mortar analogy
• Increase fun, participation, control!
• Creams: “draw” on skin, “frost the cupcake,” beat your best time
• Baths: audiobooks, bath crayons, spa time
• Wraps: wrap a stuffed animal, princess gloves, superhero wraps
• Involve kids in problem-solving (schedule, preferences)
• Develop incentive programs
• Older kids: link skincare to goals, keep log of progress
Incentive Programs
• Keep it simple and immediate for younger children
• Small, daily rewards (e.g., extra book at bedtime)
• Larger weekly or monthly goals
• Start with achievable goals
• freeprintablebehaviorcharts.com
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Additional ideas?
Areas to develop further?
Questions?