Patient Engagement Project - St

Patient Engagement Project
Cancer Care Program
St.Mary’s Hospital Centre – Quality of Care & Research Symposium
April 25, 2012
Disclosure Statement
• We have no affiliations nor any financial interests that would pose a conflict of interest.
Programme d’orientation
Origine du problème
• Nos patients ne reçoivent pas tous la même information sur les services et les façons de faire du programme
• Certains patients ont des besoins non comblés par manque d’information
• Sentiment de perte de contrôle au moment du diagnostique
• Augmentation des sentiments de stress et d’anxiété
• Perception d’aller vers l’inconnu, sentiment d’être désorienté
Programme d’orientation
Ses objectifs
•
Redonner du pouvoir aux patients en leur offrant de l’information générale sur le cancer, ses traitements et la gestion des symptômes.
•
Diminuer les sentiments d’anxiété et de stress liés a la perte de contrôle en les familiarisant avec l’équipe soignante, les services et le programme.
•
Outiller notre clientèle afin d’améliorer leur implication au niveau de leur soins.
Le programme d’orientation en bref
• Une rencontre de groupe de 1h animée par un membre du programme de Cancérologie.
• Présentation d’un court vidéo sur le circuit du patient au Centre de Jour de Cancérologie.
• Présentation PowerPoint: Plusieurs thèmes sont abordés
• Documentation écrite remise
Your team
Medical
team
Nursing
team
Other
specialists
Volunteers
You and
your
family
Dietitian
Psychosocial
team
Pharmacists
Clerical
team
Cancer & it’s treatments
†
What is cancer?
Cancer is the name given to a large group of
malignant diseases which have a common
characteristic, cells that grow out of control.
Normally, all cells of our body go through a
predictable life cycle-they reproduce and die in
response to internal or external body signals.
Cancer cells have lost this control mechanism.
They divide in a random disorganized fashion,
the end end result being a tumor or mass of cells
Cancer & it’s treatments
†
Chemotherapy
Is called a systemic treatment, this means
that it can be effective throughout the
body by travelling in the circulation
The way chemotherapy works is by
interfering with the duplications of
cancer cells and therefore stopping
the growth and spread of tumors.
Cancer & its treatments
†
Radiation therapy
Is usually given for local control of a
tumor. It can be done alone or in
combination with chemotherapy.
†
Surgery
Is used to relieve pain, obstruction,
invasion of tissue/organ and impaired
body function and reduce the tumor
burden which can impact of patient long
term outcome
Symptoms management
†
Hair loss
Not all chemo drugs cause this, and
some may only make your hair thinner.
Many people with cancer feel that losing
their hair is the worst side effect of chemo.
It has a big effect on the way you see
yourself. You will be told if this is
something you can expect.
Even though it is true that your hair
will grow back, you will need to decide
how you want to deal with the loss. Some
will choose to wear scarves or hats, while
some will prefer a cap, other could choose
to buy a wig. A list of places to buy wigs is
available in your binder. We also have
some available here that you can borrow
and return when you are done with it.
Symptoms management
†
Mouth sores
You can feel dryness of your mouth & throat,
this can cause trouble chewing and
swallowing. It is helpful to drink lots of
liquids, suck on ice chips and stay away from
cigarettes and alcohol.
You can also get sores on the inside of your
mouth. It is important that you brush your
teeth and tongue with a soft toothbrush at least
4 times a day especially after meals. Do not
use mouthwashes, rince your mouth with salt
water (1 teaspoon of salt in 2 cups of warm
water)
Symptoms management
†
Low blood count
Most chemo drugs have a strong effect on blood cells. There are three
different blood cells that you may hear about. They are; white blood
cells, red blood cells and platelets.
The job of the white cells is to fight infection. Chemo can lower your
number of white cells a lot. This can make you feel very tired and if
your count gets too low, you are more at risk of infection.
The red cells carry oxygen to your body. When your count is too low
(anemia) your oxygen is low and your body cannot work as well as
usual. You can become tired very easily, you may be dizzy.
The platelets help your body to stop bleeding when you cut or bruise
yourself. If your count is too low, you may have problems with
bruising if you bang yourself lightly or bleeding longer than usual if
you cut yourself.
Nutrition
†
Nutrition information session will be
scheduled with your first treatment
appointment.
†
Cancer and its treatments can change your
eating habits, especially if you have side
effects. It may be difficult to eat the way
you usually do. You may not be able to
tolerate certain foods and your body’s
ability to use the nutrients in foods may be
affected. There may be times when you
simply don’t feel like eating but it’s
important to try to eat small amounts
whenever you can.
Psychological Response
†
†
†
†
†
A psychological « bump »,
Might be feeling « wired » or scared,
Not being able to sleep or to concentrate on anything,
Feeling tired and down
Being uncertain about the future
These feelings are common psychological response to cancer diagnosis
and can leadto the question:
Can I get through this?
Each person has a way of coping, a set of beliefs and values.
The psycho-social team is available to help you take your qualities in
consideration and make sure that they will work in your favor along the
cancer journey.
Activity of daily living
†
Always wear gloves
when gardening.
†
Protect your hands
from cuts.
Natural products
†
†
Always notifiy your
pharmacist, doctor,
dietician & nurse if you
take supplements or
natural products
Even if natural, some
interaction could
happen with your
treatment. Be careful!
Implantation du Programme d’orientation:
Évaluation de l’expérience du Patient:
1.
Un sondage sur l’expérience avant l’implantation du Programme.
2.
Développement et Implantation du Programme d’orientation.
3.
Évaluation des résultats: Le même sondage sera distribué environ 6 mois après le début du programme d’orientation afin de comparer les résultats.
Développement du Programme d’orientation:
1.
Révision de la Littérature:Compilation, lecture, analyse et résumé.
2.
Consultation avec des hôpitaux extérieurs:Visite des lieux du centre de cancérologie. Observation participative lors d’une rencontre d’information de l’hôpital Maisonneuve‐Rosemont, Cité de la Santé et l’hôpital Général. 3.
Rencontre avec les membres de l’équipe et « le patient’s voice » du service:Présentation du projet à ces deux groupes séparément et sollicitation de leurs commentaires et suggestions. Révision de la littérature
• Plusieurs recherches mettent l’emphase sur l’importance de bien guider le patient à son entrée au service d’Oncologie. • Le fait qu’il se sent un peu désorienté face à
l’avenir, il a besoin d’un support constant pour avoir les forces nécessaires pour poursuivre ses traitements. • Si le patient part seul, qu’il n’obtient pas les informations importantes dont il a besoin, il sera plus enclin à développer des anxiétés significatives qui pourraient mettre en péril sa propre guérison.
Révision de la littérature
Title
1‐A Patient Orientation Program, Deshler,2006
Mayo Clinic, NY
Subjects
Methods
• We have no affiliations nor any 498 new patients – Any Orientation Video/Booklet.
financial interests that would pose a Non‐hematologique ca
Randomized : Class, Drop‐
conflict of interest. in, Mailed Home, Control
2‐Development and pilot testing of a psycho‐
educational intervention.
Katz MR, 2004, Princess
Margaret Toronto 19 new patients – Oral ca
Psycho‐educational Booklet. Individual intervention pre and pos‐
surgery. Randomized: Intervention and Control Group
3‐Evaluation of an oncology outpatient orientation program. Gallant, 2003, Windsor
213 new patients –Any ca
Mandatory Orientation Program – Individual prearranged intervention: Cancer Center Tour, Pamphlet, and Question‐
and‐answer Session. Randomized: Intervention and Control Group.
Révision de la littérature
1‐ Améliore l’état primaire (anxiété, peur et stress) dans lequel le patient se trouvait en entrant dans le service (1,2,).
2‐ Donne un apport important aux patients au niveau éducatif, les patients se sentent plus sûrs d’eux, moins « victime » de la maladie (2).
3‐ Les patients sont mieux outillés pour reconnaître leurs symptômes, savoir quoi faire et à qui s’adresser quand le moment se présente (1,2).
4‐Les patients reprennent un sens de confiance quand ils font connaissance avec l’équipe soignante (3).
Consultation avec des hôpitaux extérieurs
1‐Maisonneve‐Rosem
N
MUHC
Cite de La Santé
New Pt. year/ Pivot 2500 / 8 PN
5500 / 18 PN
1200 / 6 PN
Session Attendance
Required
Invitation
Invitation
Session Length
2 h. 15 min.
1h. 1h. 30 min.
Methodology
Power Point(Nurse, Power Point (Nurse, Power Point ( Pivot
Pharm., Diet, SW.)/ Diet., SW, Volunt.) Nurse)
Video(Psychol.) Power P. Booklet I.
14 # flyers 5 # flyers
2 # flyers
Session Content
1‐Clinical Flow.
2‐Cancer definition /# treatments/ general side effects.
3‐ Cancer care team
4‐ Resources
5‐ Evaluation Form
Rencontre avec les membres de l’équipe et « le patient’s voice » du service:
• Phase 1‐ Focus groups ( 4 séances) ou les attentes et les besoins de patients ont été
identifiés et un rapport avec les suggestions a été préparé. ( Présentation Power Point et un cartable d'information) • Phase 2‐ Les membres de l'équipe ont identifié
des objectifs éducatifs ( Vidéo ).
• Phase 3‐ Une recommandation a été élaboré à
partir de la synthèse de suggestions respectives de patients et de l'équipe soignante. Being a patient representative
•
HOW I BECAME INVOLVED
•
PATIENT VOICE MANDATE
•
THE PROCESS
•
WHAT WORKED?
•
WHAT WERE THE CHALLENGES?
•
HOW COULD IT WORK BETTER?
•
WHAT HAS BEING INVOLVED IN THE PEP PROJECT MEANT TO ME?
References
•
1‐Amy, M.B. Deshler, MSW, Kelliann C. Fee‐Schroeder, RN, Jill L. Dowdy, MLIS, Teresa A. Mettler, RN, Paul Novotny, MS, Xinghua Zhao, MS and Marlene H. Frost, PhD, RN, AOCN. A patient Orientation program at comprehensive cancer center. Oncology nursing forum‐ Vol 33, no3, 2006.
•
2‐Mark R. Katz, Jonathan C. Irish and Gerald M. Devins. . Development and pilot testing of a psychoeducational
intervention for oral cancer patients. Psycho‐Oncology 13: 642‐653, 2004.
•
3‐Melanie D. Gallant, Larry M. Coutts. Evaluation of an oncology outpatient orientation program: patient satisfaction and outcomes. Support care cancer (2003) 11:800‐805