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Patients living with cancer identify family physicians (FPs; ie, primary care physicians) as a preferred resource for supportive cancer care (SCC), either through direct provision or referral. However, little research exists on the specific role FPs play in addressing these needs.
A mailed survey was sent to all FPs in a health care region in Ontario, Canada, to determine their current and preferred roles in the specific provision of SCC to patients with cancer who have been newly diagnosed or are at the end of life.
Completed surveys were received from 84 (64%) of 183 eligible FPs. Most practitioners reported providing for their patients' various SCC needs. However, clear gaps were demonstrated in psychosocial and nutritional counseling and in providing information about SCC services. FPs were satisfied with their current role reported in SCC coordination, although the type of role varied; FPs who were asked about their end-of-life patients tended to see themselves as part of coordinating teams, whereas FPs asked about their recently diagnosed patients were more likely to defer this responsibly to a third party.
This study identified gaps in the provision of psychosocial and informational care to patients with cancer that may result in unmet needs. In general, FPs do not see themselves as primarily responsible for coordinating patients' SCC and do not wish to assume this role. Accordingly, models that involve FPs as team members in SCC coordination are more feasible for reducing patient need.
Patients living with cancer across the disease trajectory identify family physicians (FPs) as a main resource for informational and emotional support and an access point to other health care providers.1,2 Surprisingly little information exists on the actual role FPs play in directly addressing the supportive care needs of patients with cancer.
Supportive care is defined as services to meet psychological, social, pain and symptom management, informational, or practical needs resulting from disease and is considered a necessary adjunct to medical treatment for individuals with cancer.3 Supportive cancer care (SCC) services are often community based and delivered through a broad range of service providers. After diagnosis, the time before transfer into the formal cancer system (ie, cancer center) can be a period of high supportive care need. It has been reported in the research literature that up to 40% of patients with cancer have unmet supportive care needs.4 Appropriately, the issue of unmet needs in SCC has been identified as a priority, with the aim of reducing the negative impact of the cancer experience.5,6
In Canada and elsewhere, it has been posited that FPs should be responsible for managing their patients' SCC needs after diagnosis.7–9 The rationale behind this belief is that FPs have an intimate knowledge of their patients and their needs,10 and as previously mentioned, FPs are often the preferred contact of patients with cancer who are seeking supportive care. In addition, research has shown that patients with cancer who were treated only by oncologists received a significantly smaller proportion of recommended care compared with patients who were also treated by an FP.11
Few studies have asked FPs directly to identify their preferred role in SCC, and to our knowledge, none have comprehensively examined the actual role FPs assume in the specific provision of these types of services. We believe the present study is the first to investigate both of these questions. We focused on FPs seeing patients with cancer at the newly diagnosed and end-of-life extremes of the disease trajectory, periods during which SCC is particularly crucial.
A cross-sectional survey approach was taken. The study was conducted in the Niagara Region located in south-central Ontario, within Canada's universally funded health care system. The Niagara Region has a population of 410,574 and an area of 1,846 square kilometers. This region was selected because it contains a full range of organizations and services that address the supportive care needs of the local population; the community and health system characteristics of this selected region were established as representative of the province of Ontario.12
All eligible practicing FPs, including palliative care specialists, in the study region were included in the survey. The physician list was generated using medical directories and corroborated with professional association listings and local hospital registries. To reduce the response burden of FPs answering in terms of both their recently diagnosed patients with cancer and those receiving palliative care, FPs (except for palliative care specialists) were equally randomly selected to receive a questionnaire designated to one stage or the other.
A unique questionnaire was developed on the basis of existing instruments,5 the relevant literature, expert opinion, and the judgment of the research team. This questionnaire was pilot tested with 10 primary care clinicians outside the study area for clarity, readability, and relevance. The survey instrument contained three main sections, in addition to questions to capture physician characteristics.
The first section addressed FP care delivery, identifying the key SCC services for which FPs regularly assessed or provided (either through direct provision or referral to other providers). The service groupings specified were: information about cancer and its treatment; information about SCC services; psychosocial support (ie, counseling services such as support groups, peer groups, and professional counseling); pain and symptom management; physician support and services (ie, nursing care, homemaker support, nutritional counseling, transportation, rehabilitation services, and home-based medical equipment/supplies); and palliative care (ie, hospice care and palliative care specialists; asked of palliative group only). This comprehensive list of SCC services was derived from the conceptual literature.3 These are services that can be reasonably expected to be assessed and provided for by FPs. Response options were dichotomous (yes or no) for all service types listed.
In the second section, FPs were asked to define their current role in the coordination of supportive care for their patients with cancer. Response options were whether the FP: referred patients to another individual or agency who then became responsible for SCC coordination; was primarily responsible; or viewed himself/herself as part of a team that was responsible. Physicians were then asked how satisfied they were with the role selected on a four-point scale ranging from 1 (very satisfied) to 4 (very dissatisfied).
Finally, FPs were asked about how well the regional SCC system performed in terms of the comprehensiveness of services available to patients, ease of accessibility to these services, and extent of compatibility between different providers within the system. These three fundamental elements of service delivery must be present for a health system to be coordinated (ie, function efficiently), according to the evaluative framework of Alter et al.13 The questions covering these elements were used in one of our previous studies.5 Response items were on a four-point scale ranging from 1 (agree strongly) to 4 (disagree strongly).
When responding to each section, FPs were asked to think about patients with cancer for whom they had cared within the last 6 months. Space was provided after most scaled response items for FPs to elaborate on or explain their responses.
The survey was carried out using a modified version of Dillman's Tailored Design Method,14 with two mailed contacts and a final telephone contact for nonresponders. The survey period ran from April to September 2002. Ethics approval was obtained from the McMaster University Ethics Review Board (Hamilton, Ontario, Canada).
Analysis was descriptive, considering the proportion of FPs in each group (ie, the newly diagnosed group and palliative group) who reported: assessing/providing for a specific SCC service type; a particular role in the coordination of the supportive care of their patients with cancer; and agreement/disagreement with each statement about system performance. Four-point scales were dichotomized for ease of reporting. Open-ended responses were coded, and themes were extracted.
From a sample of 274 FPs, 175 responses were obtained, yielding an overall response rate of 64%. Table 1 reports the distribution and survey response rate for each physician group. Eighty-four FPs reported that they had had a patient with cancer who was either newly diagnosed or receiving palliative care in their practice within the past 6 months.
The characteristics of FP respondents are presented in Table 2. FPs reported practicing in the region for a median of 15 years. Just over half (51%) of FPs had a solo practice, with the others indicating that they shared a practice. The median FP practice size was 2,000 patients, with a median number of 33 patients with cancer. A comparison of FP characteristics (eg, sex and years in practice) between respondents and nonrespondents revealed no significant differences between these groups in the study region.
In general, the physician proportions of provision for each service type mirrored those of assessment. Although it is assumed that if an FP reported having provided for a particular SCC service need, then some level of patient assessment occurred, this does not necessarily imply that assessment by this physician for that need occurred on a regular basis; hence, some FPs reported on services that they had provided for yet did not regularly assess for.
The two FP groups varied in their reported assessment and provision (either provided directly or referred to third party) for patients' SCC needs (Table 3). A greater number of FPs in the palliative group who were asked about the SCC of their patients provided these services compared with those in the recently diagnosed group. The provision of SCC services associated with psychosocial and informational domains of care tended to be the least considered. Fewer than two thirds of FPs who were asked about their recently diagnosed patients with cancer reported providing information about SCC services. Although most FPs (86% in the palliative group and 85% in the recently diagnosed group) provided emotional support, fewer FPs (61% in the palliative group and 48% in the recently diagnosed group) provided referrals for professional counseling. Similarly low proportions were reported in terms of regular assessment for this potential service need.
Most FPs reported regularly assessing and/or providing for pain and symptom management, nursing care, and homemaker support in both the recently diagnosed and palliative groups. However, assessment and provision was reported less often for the remaining service types yet to be mentioned, particularly in the recently diagnosed group.
Table 4 presents FPs' reported roles in coordinating their patients' SCC and their satisfaction in this role. Almost 40% of FPs in the recently diagnosed group reported that they referred these patients to another individual or agency who then became responsible for coordinating SCC services. One third of FPs reported that they were part of a team responsible for coordinating SCC, and a smaller number of FPs (28%) described themselves as having primary responsibility for coordinating patients' SCC.
In contrast, almost half (46%) of FPs who were asked about their patients with cancer receiving palliative care reported being part of a team responsible for coordinating SCC. One fourth of FPs reported that they referred these patients to another individual or agency who then became responsible for coordinating SCC services, and 30% described themselves as having primary responsibility. The breakdown of roles reported by palliative care specialists within the palliative group was similar to that reported by the rest of the group.
Overall, most FPs (85%) reported being satisfied with their role in coordinating SCC. FPs who held sole responsibility for coordinating their patients' SCC tended to be the least satisfied, whereas all FPs in the palliative group who reported being part of a coordinating team were satisfied with their role.
Physicians' perceptions of the regional SCC system are presented in Table 5. Most FPs (82% in the recently diagnosed group and 81% in the palliative group) reported that they were satisfied with the SCC services provided to their patients. FPs (59% and 73%, respectively) were less satisfied with the information exchange between themselves and service providers in the region. Lack of communication between providers and lack of timely information were the main problems identified by FPs.
Half of the physicians felt that required SCC services were available within the region. Nursing care and psychological and social support were the main services identified as inadequate. Physicians' suggestions for system improvement included the presence of a central coordinating body, increased resources, and more information for physicians about available SCC services.
With this study, we have taken the first step toward developing a more comprehensive understanding of specific SCC patient need assessment and service access through FP self-reported provision or referral for key service types during the initial diagnostic and palliative phases of care. This study also provides insight into important mitigating factors that may influence the level of assessment and service access in the context of a typical Canadian health care services system from the perspective of FPs.
In our examination of FP care delivery, we found most of these clinicians reported assessing and/or providing for their patients' SCC needs in terms of pain and symptom management, emotional support, nursing care, and homemaker services; however, this level of care was not evident for needs such as group or professional counseling, nutritional counseling, and information about SCC services.
Where patients were in their illness trajectory influenced the role of FPs in the patients' care. With regard to the SCC needs examined in this study, a smaller proportion of FPs in the recently diagnosed group assessed or provided for these SCC services compared with those in the palliative group, with marked differences in emotional and other psychosocial support services. Overall, considering that 50% to 75% of patients with cancer require specific SCC, and approximately one third require expert psychosocial intervention,6 these care practices may pose a barrier to patients with cancer in having their needs met.
Internationally, research has demonstrated that both FPs and oncologists use more instrumental than socioemotional (ie, psychosocial) communication in cancer consultations.15,16 In a recent study in the United States in which FPs were interviewed about their involvement in the care of patients with cancer, although all of the FPs played some part in pain management, only one third reported providing emotional support.17 Another US study, from the perspective of patients with cancer, found that patients believed their FP to be an excellent source of educational support (with 91% providing educational services) but less so for emotional support, with fewer than half of FPs providing this type of SCC service.18
We found that most FPs were satisfied with their reported role in the coordination of SCC, although the type of role identified varied. FPs who were asked about patients receiving palliative care tended see themselves as part of a coordinating team, whereas FPs who were asked about recently diagnosed patients with cancer were less likely to view themselves as having any coordinating role in SCC. This difference could be a result of FPs feeling unsure about how to help their patients navigate the cancer system after initial diagnosis,10 a possibility that requires additional investigation. In addition to patient stage of illness and physician preference, variation in role among FPs has also been explained by the extent to which the specialist (eg, oncologist) delegates responsibility to the FP.10
The impressions from most FPs in this study were that they did not see themselves as having a primary responsibility in the coordination of SCC, nor did they, for the most part, desire to assume this role. These findings coincide with those of other studies7,19 examining the role of Canadian FPs, which also found that only a minority of these practitioners wanted to take full responsibility for coordinating their patients' cancer care throughout the illness trajectory. Rather, the management of patients with cancer was described as a team effort. However, how team participation should be organized is not entirely clear.
Considering this finding, along with the current limitations in physician resources, interventions that directly target physicians to become responsible for coordinating patient SCC are likely to meet resistance.20 In our study, the highest level of role satisfaction was expressed by physicians who reported being part of a coordinating team, suggesting that models that involve community physicians as team members and not as sole coordinators of SCC are more practical and ultimately more likely to be successfully implemented, leading to improvements in supportive care for patients. Enabling FPs to become more active in care coordination and support services requires consideration of how current reimbursement practices can be adjusted to reinforce FP practice change. Payment reform in primary care represents a continued debate in both Canada and the United States.21–23 Reforming reimbursement models for primary care has been viewed as critical to both sustaining and transforming practice in this field.21–23
One important observation in this study was that many FPs felt that SCC services for their patients were unavailable, particularly in terms of psychosocial support and nursing care. This may have contributed to the reported gaps in assessment, provision, and referral in these domains. In addition, a large proportion of FPs were dissatisfied with the cancer system in terms of service delivery, which reflects the issue of fragmentation; however, they were generally pleased with the SCC services that their patients had received. Not surprisingly, poor communication between health care providers and sites was another issue that emerged, in agreement with the findings of Sargeant et al,24 who found gaps in information transfer among FPs, community specialists, and oncologists, which interfered with the provision of timely and compassionate care for patients. The FPs in the current study recommended a centralized body responsible for the planning of SCC in the region to improve coordination of services.
A possible limitation of this study in using reported rather than observed practice data is respondent bias, with physicians overstating their involvement in SCC provision. However, the physicians were quite forthcoming in stating what they did and did not do, as evidenced in the low percentage of FPs who reported providing for many of the SCC service types and in the accompanying open-ended comments within the survey, in which the physicians had little reservation in explaining their positions. The study did not take into consideration the effects of patient characteristics (eg, age, sex, education, income, and disease site) on physician role, an area in which other studies have found relationships.2,25 For the purposes of this research, it was reasoned that the role indicated by physicians would be their most common role applied to the majority of their patients.
Understanding how FPs may facilitate access through assessment, provision, and referral for identified SCC services is essential to inform the development of strategies to enhance access to necessary services and service providers in the community. FPs play an important role in cancer care, yet many FPs operate in isolation with regard to the cancer system.25,26 There is an emerging trend among both oncologists and FPs to identify shared care as the most appropriate model for addressing the SCC needs of patients with cancer.27 Research is necessary to determine how to better integrate FPs into regional cancer programs to ensure optimal management of patients' SCC needs.
The authors indicated no potential conflicts of interest.