Patient Engagement Project - St
Transcription
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