“MY QUALITY OF LIFE” PROGRAMME IN PATIENTS WITH INFLAMMATORY BOWEL DISEASE (IBD)

Iñigo Roa Esparza, Olga Merino Ochoa, Sylvia Ibáñez Feijoo, Laura Gómez Irwin, José María García González, Ricardo Ituarte Uriarte, Tomás Méndez Sampedro, Leire Cortón Corral, Susana Castelo Zas, María Jesús Suárez Regueiro

Cruces University Hospital/ Osakidetza

BACKGROUND:

• IBD has a significantly negative impact on patients’ quality of life

• The Ezkerraldea-Enkarterri- Cruces Healthcare Organization has made a firm commitment to adopt the Value-Based Health Care (VBHC) model

• The IBD Unit has analyzed our health care delivery system in order to improve the effectiveness of our Performance Improvement Plan based on patients’ experiences

CONCLUSION:• VHBC implementation implies a transformation of the organization• User Experience Tools add a different perspective to the route design, focusing on what really matters to patients

and improving their quality of life• This change of perspective is important, especially in chronic diseases, so that patients feel less lonely with their

disease and better outcomes can be obtained

OBJETIVES:

• To identify and systemize the incorporation of perceived quality of life variables

• To reorient medical care towards what really matters to patients

METHODS:• Building up a multidisciplinary team• Creating a Process Map by means of User

Experience and Design Thinking strategies • Developing a list of improvement measures • Establishing a specific route (based on ICHOM

consortium) to achieve those goals• Elaboration of questionnaries, surveys and

necessary information to guarantee the correct functioning of the route

92

STAGES OF

THE

EXPERIENCEPre diagnosis

GOOD

BAD

NEUTRAL

Diagnosis Treatment Follow up

1 54 63 1110

WHAT

HAPPENS IN

THIS

MOMENT?

WHAT IS THE

PATIENT

THINKING?

EMOTIONAL

EXPERIENCE

REFERENCE

STAFF

MEMBER

ASPECTS TO

IMPROVE

PATIENT EXPERIENCEINFLAMMATORY BOWEL DISEASE

7 8

First symptomsStronger and

constant outbreaks

Hospitalizationcaused by the

outbreaks

Consultations in several health

centers

Communication of the diagnosis

Diagnosis aceptance

"I did not think it was a disease, or anything serious."

MAIN

EMOTIONNot much worry

Treatmentassignment

Treatment - Day Hospital

Effects of thetreatment Surgey

Follow up consultations

• She has begun to have the first

outbreaks and

symptoms.

• It is not continuous, she

does not have any

problem since the

outbreaks are soft

and they occur distanced in time.

• She does not

think it's

anything serious.

• At the time she begins to have

stronger and more

constant outbreaks.

She bleeds a lot.

• It limits her social

and work life a lot,

she must always

be very careful not

to get dirty.

• It changes her

character. She is

not feeling well and

she feels insecure.

Anxiety

InsecurityUncertaintyTiredness

"My daughter does not understand why I have been

in hospital for so long."

• Primary care• Private

• Primarycare

• Emergency

• Private

Fear Hope Agotamiento

• They are trying different

treatments. Some

do not make

effect or they do it

temporarily. They inform her of the

percentage of

treatment

success.

• She did not

expect the

treatments not to

work, that affects

her. She is bored and exhausted.

"When treatments fail, it affects a lot emo?onally."

• She has sessions every 6 - 8 weeks,

and it can not be

interrupted.

• She comes to the day hospital at

8.00 in the

morning and

delivers the

papers to the secretariat. The

treatment starts at

11.00.

• Primarycare

• Emergency

• Private

• Primarycare

• Emergency

• Private

More coordination in the surgery

team.

"I'm the same waiting time as the treatment time."

• Finally, they communicate her

that she has an

inflammatory bowel

disease. She has

never heard about it.

• They communicate

her that it is a

chronic disease and that scares her.

Electronictreatment paper.

• Because of the strong outbreaks,

she has to be

hospitalized

several times and

for long stays.

• That makes her

working and

personal life

difficult She thinks about

quitting her work,

because she is

on sickness

leave every 6 months.

• She has gone through several

health centers and

has not had a clear

diagnosis.

• They have always

given her

guidelines of

nutrition and

recommendations to lead a normal

life, but they have

not named the

disease until she

reaches the inflammatory unit.

• Although it is difficult for her to

assimilate that the

disease is chronic,

she understands

that she has to live with it and that

there are

treatments that will

solve it.

• She uses

psychological

support to be able

to accept her new

situation. She thinks about

quitting her work.

Diagnosis accompanied by

information on

nutrition and

emotional

support.

• She doesn’t feel good the day of

the treatment and

neither the next

day. She feels

tired.

• At home it affects

her because she

does not feel like

doing anything.

• She doesn’t want

to say that she is

tired and not

wanting to do anything. It limits

her personal life.

Waiting time until the availability of

treatment by

pharmacy.

Improvement in the treatment at

the reception in the

day hospital.

• Inflammatoryunit

• Inflammatoryunit

• Inflammatoryunit

• Day hospital

Possibility of being treated in

the afternoons for

work conciliation.

• Digestivesurgery

team

• Inflammatoryunit

Boredness Discomfort Distrust Control

"It's not just going to the toilet."

• She has operated more than once,

and each time a

new surgeon

operates her.

• In one of the

operations they

postponed the

intervention 2

months later, because it was not

urgent. Claimed

via SAPU.

• The postoperative period was very

hard.

• Every 2 - 3 treatment sessions there is a

follow-up consultation.

The consultations are

face-to-face and that

makes her feel controlled.

• That also influences

that she has to stop

working.

• There are also

interconsultations with

other specialties, as

results of the analyzes.

Possibility of having telephone

consultations

Inquiries of intimate and

confidential

space. A closed

consultation.

Give information and guidelines

with visual and

written support.

Facilitate the location of the

consultations and

the spaces on the

web (a map...).Individual rooms, it is uncomfortable

to share WC.

Time until the diagnosis.(Very variable; 2 years, 9 years….)

Knowledge of the patient's history

before the

consultation, not

reading it at that

moment.

"In the private very bad. Once I have come to Cruces, great, it has

changed my life "

Same doctor during the follow up.

What does he

think?

How does he feel?

What does he hear?

What does

he do?

What does he say?

What does he see?

Motivations Fears

EMPATHY MAP

Uncertainty

AnguishStress

Shame

Fatigue

Frustra- on

“Don’t worry, everything is will be

fine”“It is a chronic

disease that has no

cure. The outbreaksis unpredictable ... "

Plan my rou- ne

Dejo de hacer cosas para no exponerme

Stop eating

Wear diapers fortravel or work

“I don’t feel likedoing anything”

“It significantlyimpacts my daily life, including work , social

life…”

The closestbathrrom

People who do nothave this disease

I will be able to

work? Do I have to stop working?

I don’t want to talkabout what’s

happening

I have no cure, this situation will

never changeThey will fire me

Become a parent

Job promo- on

Stabilize and control the

disease

I’m worried thatmy children

might have it too

Fear of losing a rela- onship

Fear of future

Fear that treatments willfail and that I will have to

go through surgery

1

2

3RESULTS:

• A specific remote consultation for IBD patients

• Priority pathways for these pathologies

• Nutritional guidelines to assure compliance

• Shortening waiting lists

• Reduction in patient bureaucracy and paperwork

• Virtual tools for monitorization of patients with asymptomatic disease

Process Map with ICHOM requirements

Patient Experience

Professional Workshops