1. The Interface between Primary Care and Specialty Care in Primary Treatment of Cancer Jonathan Sussman Supportive Cancer Care Research Unit Laura-Mae Baldwin University of Washington Department of Family Medicine

2. Cancer Care is Complex Many providers Many providers Many transitions Many transitions Many choices Many choices Continuity of Care by “system” challenged Continuity of Care by “system” challenged

3. The Goal is Supportive Cancer Care The provision of needed services to meet the physical, informational, psychological, social, spiritual, and practical needs of persons living with or affected by cancer The provision of needed services to meet the physical, informational, psychological, social, spiritual, and practical needs of persons living with or affected by cancer CCO 1997 CCO 1997 40% patients report unmet supportive care needs 40% patients report unmet supportive care needs

4. Unmet Supportive Care Needs Especially newly diagnosed patients Especially newly diagnosed patients Information and psychosocial domains Information and psychosocial domains No change over 10 years of research No change over 10 years of research Significant additional burden Significant additional burden

5. What do we know about the roles of primary care and specialist providers in meeting these support needs during primary treatment? Patient perspectives Patient perspectives Provider perspectives Provider perspectives

6. Patients’ Perspectives Want needs assessed and acknowledged Want needs assessed and acknowledged Need help navigating system Need help navigating system Survey of recently diagnosed patients in Ontario: Survey of recently diagnosed patients in Ontario:  2000-2003  > 2500 patients  Oncologists and Family Physicians identified as preferred sources of information (> 80%)

7. Identified Needs at Transition Domain Number of Items Proportion Choosing at Least 1 Item Most Frequently Chosen Item Information1176.6% Information from a Physician Physical1143.7% Medical Supplies Psychological937.2% Emotional Support from Oncologist Spiritual Support 426.3% Pastoral Support Complementary Therapies 715.0% Massage Therapy Social Support 413.5% Social Support from a Support Group

8. Community Services  Multiple entry points  Complex  Generalist services  Discontinuities between institutional & community-based services  Lack of coordination

9. Physicians’ Role Perspectives (% indicating having responsibility to assess) InformationPsychologicalSocialPractical Nurse87826885 Family MD 74876478 Surgeon88443267 Oncologist88665676

10. Primary Care and Specialist Roles during Treatment Newly diagnosed patients identify both Family Physicians and Oncologists as important sources of knowledge and support Newly diagnosed patients identify both Family Physicians and Oncologists as important sources of knowledge and support Family Physicians identify responsibility for assessment in all domains of supportive care Family Physicians identify responsibility for assessment in all domains of supportive care Oncologists may recognize the importance of all domains but take responsibility for those involved directly in medical treatments and decision making. Oncologists may recognize the importance of all domains but take responsibility for those involved directly in medical treatments and decision making.

11. Factors at the Interface between Primary and Specialty Care that can Interfere with Providers’ Abilities to Fill these Roles Lack of role clarity Lack of role clarity Lack of communication Lack of communication Lack of knowledge Lack of knowledge Lack of time Lack of time

12. Factors Influencing Providers’ Ability to Fill Perceived Roles Lack of Role Clarity Lack of Role Clarity –Overlap in perceived roles »in the areas of information provision and practical care among nurses, primary care physicians, and specialists »In the areas of social and psychosocial among nurses and primary care physicians. Patient Navigators and support organizations also work in these areas.

13. Factors Influencing Providers’ Ability to Fill Perceived Roles Lack of Communication Lack of Communication –Patients enter cancer care and don’t resurface in primary care offices until care is completed »Patients are overwhelmed »Other programs provide some of the resources needed (e.g., Navigation, social work, support agencies) »Cancer specialists may not have general medical health on their radar screens, so don’t encourage patient contact with their primary care providers.

14. Factors Influencing Providers’ Ability to Fill Perceived Roles Lack of Communication Lack of Communication –Missed opportunities for primary care providers to: help patients understand the importance of treatment and treatment completion help patients understand the importance of treatment and treatment completion promote shared decision making by helping patients identify appropriate questions to ask their oncologists. promote shared decision making by helping patients identify appropriate questions to ask their oncologists. extend care for rural patients by providing some local services extend care for rural patients by providing some local services educate patients’ family members regarding their cancer risk and need for screening educate patients’ family members regarding their cancer risk and need for screening provide specialists with the “big picture” regarding patients and their health and psychosocial needs provide specialists with the “big picture” regarding patients and their health and psychosocial needs summarize accurately current essential medical issues (e.g., medication lists) summarize accurately current essential medical issues (e.g., medication lists)

15. Factors Influencing Providers’ Ability to Fill Perceived Roles Lack of Knowledge Lack of Knowledge –Providers may not have enough knowledge to competently advise their patients. »Primary care providers may not refer to the appropriate specialists »Oncologists aren’t up to date in basic primary care health issues »Primary care providers may not know enough about treatment options to advise their patients, or may not have skills in shared decision making

16. What Strategies have Addressed Issues at the Primary Care/Specialty Interface Shared care models Shared care models –Cochrane review shows shared care models can influence medication use, but only one high quality study on cancer care

17. What Strategies have Addressed Issues at the Primary Care/Specialty Interface Information exchange Information exchange –Kousgaard study shows structured information packet improved GP knowledge and capacity to support and counsel patients, more physician satisfaction

18. Future Research Information exchange can make a difference Information exchange can make a difference What about information from primary care to oncologists? What about information from primary care to oncologists? What impact might this have? What impact might this have? –especially in the era of treatments that are more effective yet may come at the cost of late toxicity? –e.g. Aromatase inhibitors?

19. Future Research Shared care model Shared care model Education (patients and practitioners) Education (patients and practitioners) Communication strategies Communication strategies

20. What Potential Systematic Solutions Does Information Technology Offer? Electronic information sharing strategies between primary care providers and specialists Electronic information sharing strategies between primary care providers and specialists Protocols for managing chemotherapy, monitoring labs for rural providers Protocols for managing chemotherapy, monitoring labs for rural providers Tools for treatment decision-making, shared decision-making Tools for treatment decision-making, shared decision-making

21. Are the Challenges and Research Regarding Cancer Care Interfaces Germane to Other Health Conditions? The complexity of the cancer care trajectory make it an ideal model to study issues around the interface between primary and specialty care The complexity of the cancer care trajectory make it an ideal model to study issues around the interface between primary and specialty care The period of primary treatment is unique in that therapies generally must be delivered by specialists while patients continue to seek support from their primary care providers The period of primary treatment is unique in that therapies generally must be delivered by specialists while patients continue to seek support from their primary care providers

23. What Issues are Physicians Considering when Caring for Cancer Patients during Treatment? Primary care physicians? Primary care physicians?Oncologists?