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Implementation of an infirmière pivot en oncologie (IPO) for Head and Neck cancer in Quebec City area (region 03) Lise FILLION, R.N., Ph.D. (psychology) Navigation and self-management Innovative Approaches to Managing Chronic Conditions Vancouver, B.C., February 23, 2005

PLAN CONTEXT Implementation and Program Evaluation Phases and objectives Conceptual Model Design : Process (qualitative) and Outcomes Results CONCLUSION DISCUSSION

CONTEXT To improve cancer control, different initiatives: Canadian Strategy for Cancer Control (CSCC) Several provinces have reviewed their approach. In Quebec : Programme québécois de lutte contre le cancer (PQLC)

Problem Patients and families complain about difficulties understanding the diagnosis and cancer care system (PQLC,1997) Poorly coordinated care, long waiting lists, poor connections, and inadequate information (lack of navigation) 2 main categories of needs (MSSSQ 1995, 2004): Cancer experience itself (symptoms management, information, emotional support, ) Access and continuity of care (continuity of approaches, information and therapeutic relationships)

The CSCC and Patient navigator Several workgroups of the Canadian Strategy for Cancer Control confirmed the problem. They also proposed a potential solution: the patient navigator. The Supportive Care/Cancer Rehabilitation Working Group Report (2000) recommends establishing navigator roles in communities to co-ordinate patient needs (CSCC Supportive Care Working Group, 2002, p.21). The idea is to have someone to help patients enter and navigate through the maze of professionals, services, and programs.

The PQLC and l infirmière pivot en oncologie (IPO) The PQLC promotes an integrated model of services : Patient-centred; interdisciplinary team; and comprehensive care. The implementation of the Infirmière-pivot en oncologie (IPO) is an integral part of the PQLC. Similar role than patient navigator, but different: (symptoms management is included for the IPO) 41 IPO in March 2004; M 192 new cases by year; 5000/36000 pts (De Serres et al., 2004) Number of IPO is increasing. Implementation in process all over the Province of Quebec (MSSSQ,CÉPIO, 2005)

Preliminary work : definition of IPO role Litterature review & qualitative study (Fillion, Morin, & Saint- Laurent, 2000) Numerous terms: Case manager, Clinical Coordinator, Cancer Support Nurses, Advanced Nurse Practice, Breast Nurse, Cancer key worker, Cancer Coordinator. Close to new models of «case management» Moves beyond the scope of a systems coordinator (system-oriented) To patient advocacy : assessment of needs, planning, linkage to resources, psycho-education, crisis intervention (patient-centred )

Operational definition (CQLC, 2000) The role may change in importance depending: treatment stage (e.g. more important around diagnosis) health providers and health services available Easily accessible Present from diagnosis to palliative care Work with an interdisciplinary team (complementary) When treatment begins, the IPO may facilitate information from one clinical team to another (e.g. from surgery to radiation therapy) Make links between actors and heath care settings Oncology nurses (BScN prepared; clinical expertise/experience in oncology; CNA oncology nursing certification; interests; personal qualities)

IPO Functions Assessment, reassessment (physical and psychosocial; in Quebec new legislation for nurses) Information (on cancer, treatments, symptoms management, resources, ) Support (emotional) and presence Coordination of care (facilitator; among HP, organisations, and community resources)

HEALTH PROGRAM EVALUATION Elaboration d une stratégie d implantation d intervenants pivots en oncologie au CHUQ: étude d implantation sectorielle (01/2002-12/2004) Supported by RRSSS-03 & CCLCCQ Research Team: Lise Fillion, RN., Ph.D. Marie de Serres, RN., M.Sc. Michèle Deschamps, RN., Ph.D.; Isabelle Bairati, MD, Ph.D. François Meyer, MD, D.Sc. ; Pierre Gagnon, MD Josée Savard, Ph.D. ; Luc Bélanger, MD, Ph.D.

Program Evaluation Phases OBJECTIVES A B C 1. Create a vision of the new role (committees; consultation: winter 2002) 2. Describe functions and initial clinical tools 3. Develop selection criteria & training program 4. Prepare the change, implement the IP (09-02) 5. Describe the implementation process 6. Describe the impact of the new role

CONCEPTUAL MODELS Organizational change (Robert, 2000) 1) Vision 2) Necessary changes from current to desirable situation 3) Strategical analysis (legitimacy, relevance, credibility, changes, costs/benefits) 4) Facilitating factors and obstacles 5) Impacts 6) Overall strategy Health program evaluation (Donabedian 1980,85) PERCEPTION OF ACTORS STRUCTURE; RESOURCES; PROCESS, EFFECTS; IMPACTS Logical framework for implementation of change : Theory of action (Patton, 1997)

LOGICAL FRAMEWORK (Patton, 1997) DIMENSIONS RN Tec md O P Pts F GP C LS C 1. Inputs X X X X 2. Activities (IP functions) X X X X X X X X 3. Participation X X X X X X X X 4. Reactions X X X X X X X X 5. Knowledge and attitude X X X X X X X X change 6. Practice and behavior changes (coping) X X X X X X X X 7. Effects and Impacts X X X X X X X X

Process of the implementation (qualitative approach) T0 T1 T2 Longitudinal descriptive design Data collected before (T0), 6 mth (T1) & 1- year after the implementation (T2) Cancer staff CHUQ Patients Family S/02 47 -- -- W/03 42 19 15 35 16 15 W/04 Interview based on Patton s logical framework External staff (family md & CLSC) -- -- 21

Process study: final results (T0, T1 & T2) 1. Inputs 2. Activities 3. Participation 4. Reaction 5. Attitudes ch. 6 Behaviors ch. 7. Effects Health Providers Understand role & functions Coordination (from StCare to PTNeeds), support, information, assessment Progressive integration Good for both: patients & team Understanding of the patients More communication (internal & external) and better interdisciplinary work Better adjustment for patients and family; increased satisfaction at work for HP Patients & Family -- Support & information Respect of needs Very positive Understanding (C,P,S) Active coping (emotion and problem solving) Supported, informed, realistic expectancies about C & treatments

Process study: : conclusions Association between presence of the IPO and: 1) patient and caregiver s adjustment to disease (understanding of cancer and its treatments; active coping strategies; importance of timely and tailored information: feel supported). 2) improved continuity of care: a) information; b) treatments and approaches; c) therapeutic relationship (safety net). 3) improved interdisciplinary work based on patient-centred needs (help to deal with conflicts and different values; clarification of roles and tasks still a challenge, dynamic process)

Impact of the new role (quantitative approach) Correlational design (comparison of 2 cohorts) Outcomes : Quality of life Adaptation Satisfaction Costs/benefits H. Providers Patients Health system Historical Cohort 52 83 (63%) In process IPO Cohort In process 74 (63%) In process

Group homogeneity Variable Gender Age Education Work status Type of food Cancer stage Treatment Charlson Index Test X 2 t t X 2 X 2 X 2 X 2 t Value 4.78 NS.08 NS.81 NS 2.13 NS 6.05 NS 4.53 NS Surgery/chimio/rad.t./ NS 2.12 p =.04 (*higher in post)

Impact on Quality of life: preliminary results (EORTC-30) Physical functioning Role functioning Cognitive dimension Emotional dimension Social dimension Note: * p <.05 Historical cohort 76 67 75 66 68 IPO cohort 75 67 80 73* 72

Impact on Adaptation process: preliminary results (IRLE( IRLE-C C & POMS) Total stressors (IRLE-c) Future concerns Functional Disability Social problems Medical & Treatments Body-Image Concerns Distress (POMS -TMD) 50 9.2 12.9 8.3 5.5 9.4 48 46* 8.5* 12.9 7.4* 5.2 8.0** 43 Note: * p <.05; ** p<.01

Impact on satisfaction: preliminary results (SAT-32) Global oncology care satisfaction Satisfaction with medical team Satisfaction with interdisciplinary team Satisfaction with health services and organisation Satisfaction with IP H 86 80 80 77 --- IPO 91* 87** 86* 83* 91% Note: * p <.05; p<.01

IMPACT Study: : Conclusions Patient outcomes: improvement in 3 categories of indicators a) quality of life; b) adjustment to disease (self-management); c) satisfaction with care. Health services outcomes: in process (JCS model- demands/control- job satisfaction and others (role ambiguity). Health Providers outcomes: in process.

CONCLUSION Qualitative data support the success of the implementation and describe the benefits of this new role for patients, families, health care providers, and continuity of care. Quantitative results suggest positive impact for the patients on 3 indicators.

DISCUSSION Preliminary phase: important to prepare the field for change Partnership, committees, information, and VISION (PQLC) Consultation phase: useful to tailor the IPO functions (job description) and select the site of implementation Meetings with homogeneous groups, and VISION Process and impact studies: triangulation of approaches and populations Choice and flexibility; personal qualities of the IPO; The evaluation process is appreciated; hard to integrate GPs Organizational issues Improvement to PQLC understanding, interdisciplinary team & virtual corridors of services (integrated network of care). Importance of having managers committed,and health authority on board. Results coherent with Roberge (2004) who had : shared philosophy Next step in research

References De Serres, M., & Rochette, M.(2004). Les infirmières pivot en oncologie au Québec : L état de la situation en 2004. Conférence présentée au forum sur l infirmière pivot en oncologie. Montréal, 26 mars. Donabedian, A. (1980). Explorations in quality assessment and monitoring -volume I- The definition of quality and approaches to its assessment. Michigan:Ann Arbor. Donabedian, A. (1985). The epidemiology of quality. Inquiry, 22 (Fall), 282-292. Farber, Deschamps, & Cameron (2002). Assessment of the navigator role in meeting the informational, decisional, and educational needs of women with breast cancer in Canda. Health Canada. Fillion, L., Morin, D. & Saint-Laurent, L. (2000). Description du concept de l intervenant pivot: approche théorique et qualitative. Rapport présenté à l équipe de recherche sur le dossier clinique informatisé en oncologie. Québec: Université Laval. MSSSQ (1995) Pour une meilleure compréhension des besoins des personnes atteintes de cancer, document. Comité consultatif sur le cancer, Québec: MSSS. MSSSQ (1997). Programme québécois de lutte contre le cancer: Pour lutter efficacement contre le cancer, formons équipe. Comité consultatif sur le cancer, Québec : MSSS. MSSSQ (2000). L intervenant pivot en oncologie: un rôle d évaluation, d information et de soutien pour le mieux-être des personnes atteintes du cancer. Document de réflexion. Conseil québécois de lutte contre le cancer: MSSS. MSSSQ (2005). Pour optimiser la contribution des infirmières à la lutte contre le cancer. Avis. Direction de la lutte contre le cancer. MSSS. Patton, M.Q. (1997). Utilization-focused evaluation: The new century text (3rd ed.). London: Sage publications Roberge, D. et al. (2004). Implantation d infirmières pivots dans un réseau en émergence : expérience de la Montérégie, conférence prononcée au Forum sur l infirmière pivot en oncologie, Montréal, 26 mars 2004 Robert, G. (2000). Bien préparer les changements organisationnels. Revue québécoise de psychologie, 21 (3), 37-51.