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Involvement of Family Physicians in the Care of Cancer Patients Seen in the Palliative Rapid Response Radiotherapy Program

Elizabeth A. Barnes, Grace Fan, Kristin Harris, Meagan Doyle, Lawrence S. Librach, Edward Chow, Lisa Barbera, May Tsao, Kelvin Lam, Cyril Danjoux

From the Department of Radiation Oncology, Toronto Sunnybrook Regional Cancer Centre; The Temmy Latner Centre for Palliative Care, Mount Sinai Hospital; and Institute for Clinical Evaluative Studies, Toronto, Ontario, Canada

Address reprint requests to Elizabeth A. Barnes, MD, Department of Radiation Oncology, Toronto Sunnybrook Regional Cancer Centre, 2075 Bayview Ave, Toronto, Ontario, Canada, M4N 3M5; e-mail: toni.barnes{at}sunnybrook.ca

	ABSTRACT

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Purpose It is important for cancer patients to maintain continuity of care with their family physician (FP) while being followed at the cancer center. The primary objective of this study was to determine the perception of patients seen in the palliative Rapid Response Radiotherapy Program (RRRP) on FP involvement in their cancer care. Secondary objectives were to identify factors predicting for perceived FP involvement in patient cancer care.

Patients and Methods Consecutive patients were approached for study enrollment at the time of RRRP visit and asked to complete a 15-item survey.

Results Three hundred sixty-five patients were accrued over 15 months. Ninety-eight percent had an FP, and 43% felt their FP was involved in their cancer care. Eighty percent of patients were satisfied with the overall medical care provided by their FP, and 71% had been with their FP for 5 years. The most common reason patients gave for perceiving limited FP involvement was the medical oncologist looking after all of their cancer needs. Multivariate analysis found that satisfaction with overall medical care provided by the FP, shorter time since last FP visit, seeing the FP since cancer diagnosis, and FP providing on-call service for after-hour emergencies all significantly predicted for patients perceiving FP involvement in their cancer care.

Conclusion Less than half of patients surveyed perceived their FP as involved in their cancer care. Encouraging continuity of care between patients and FPs may allow for easier transition of care back to the FP once palliative treatment at the cancer center has finished and help facilitate end-of-life planning.

	INTRODUCTION

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The Rapid Response Radiotherapy Program (RRRP) was established in 1996 at Toronto Sunnybrook Regional Cancer Centre to provide prompt palliative radiotherapy to cancer patients with symptomatic locally advanced or metastatic disease.¹ After radiotherapy treatment, patients are observed by their referring physician (usually medical oncologist) for continued oncologic care and do not routinely return to the RRRP for follow-up.² However, patients can be referred back to the RRRP for palliative radiotherapy reassessment.

In Canada, family physicians (FPs) are the main providers of primary medical care. Therefore, when patients are no longer receiving active treatment at the cancer center, they may be discharged from follow-up with the oncologist back to the care of their FP. It is important for patients to maintain continuity of care with their FP while being seen at the cancer center. The FP has often been involved in a patient's care for a number of years, developing over that time a trusting relationship with the patient and family. The FP often provides easier access, less traveling time, and more personalized care than a busy cancer center. Many cancer patients also value their FP for emotional and family support, for providing primary medical care, and for coordinating care with other health care providers.³

However, when being treated and observed at the cancer center, patients may not be observed closely by their FP.⁴ Although 80% of FPs believe that it is important to observe patients during this time,⁵ another survey found that only 43% of patients felt their FP was involved in their follow-up care, and only 31% had a follow-up appointment scheduled.⁴ Cancer patients can lose contact with their FPs because of patient or physician relocation, limited involvement with the FP before cancer diagnosis, distrust over delay in diagnosis, failure to perceive a need for the FP, lack of FP involvement in the hospital, and poor physician communication.³

The primary objective of this study was to determine the perception of patients seen in the RRRP on FP involvement in their cancer care. Secondary objectives were to identify factors predicting for perceived FP involvement in patient cancer care.

	PATIENTS AND METHODS

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Participants
Consecutive patients seen in consultation or follow-up in the RRRP were considered eligible for this study if they were cognitively intact, provided written informed consent, and had not been previously accrued for this study. Full ethics approval for research involving humans was obtained from the hospital research ethics board.

Survey
Survey content and format were evaluated by a palliative care physician and members of the RRRP (five radiation oncologists, nurse, and radiation therapist). The research assistant approached patients for study entry after they were seen in consultation with the radiation oncologist. A pilot study of 10 patients was then conducted to ensure appropriate wording. The final survey consisted of a total of 15 questions. Patients were asked if they had an FP and, if so, how involved they felt their FP was in their cancer care (responses were scored on a 5-point Likert scale, with 1 = not at all involved and 5 = very involved). Patients answering 1 to 4 were then asked what factors they felt limited FP involvement in their cancer care and which was the most important (nine potential factors were listed, with space provided to list additional factors). All patients were then asked whether they wanted their FP more involved in their cancer care (yes, no, or satisfied with current level of involvement); which physician they felt was most responsible for their cancer care; how often they saw their FP (next appointment, last appointment, and had they seen the FP since their cancer diagnosis); how long they had been under the care of their FP; how satisfied they were with the medical care provided by their FP (responses were scored on a 5-point Likert scale, with 1 = not at all satisfied and 5 = very satisfied); whether their FP makes home visits; whether their FP provides an on-call service for evening and weekend (after-hour) emergencies; whether they had seen a palliative care doctor; and whether nurses or other care givers were coming to the home. Patients not having an FP were still included in this study; the answer to FP involvement in cancer care was recorded as 1 (not at all involved), and the remainder of the survey was not completed. Patient data including age, sex, primary tumor site, site(s) of metastases (which was not necessarily the site(s) treated with radiotherapy), performance status, distance from residence to cancer center, date of cancer diagnosis, and date of metastases were also collected.

Statistical Analysis
Sample size calculation was based on the hypothesis that 40% of patients seen in the RRRP have an FP and perceive their FP to be involved in their cancer care. Perceived involvement was taken as a score of 4 or 5 on a 5-point Likert scale (1 = not at all involved and 5 = very involved) to the second survey question (How involved do you feel your FP is in your cancer care?). A previous survey of patients attending oncology outpatient clinics found that 43% felt their FP was involved in their follow-up care.⁴ Using a 95% CI with a precision of ± 5%, the calculated sample size was 365 patients.

A multivariate model was used to determine factors associated with perceived FP involvement in patient cancer care. All patient data were entered into the multivariate model, apart from time since cancer diagnosis and time since diagnosis of metastases, which were examined using Kaplan-Meier analysis. All survey responses were entered into the model except for did patients want the FP more involved in their cancer care (because response options were nonlinear) and physician felt to be most responsible for cancer care (because responses were heavily skewed). Factors limiting FP involvement were not entered into the model because not all 365 patients answered this question because the 127 patients who reported that their family physician was very involved in their care (answering 5 on a 5-point Likert scale) were not asked what factors limited care.

	RESULTS

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Between April 2005 and June 2006, 365 consecutive patients seen in consultation or follow-up in the RRRP were accrued to this study. A total of 756 patients attended the clinic during this time period, and 200 were repeat visits; therefore, 65.6% (365 of 556) of potentially eligible patients were approached and entered onto this study. Reasons for not participating included patient refusal (n = 81), patients not being cognitively intact (n = 61), and patients not understanding English (n = 49). Demographic data for the study patients are listed in Table 1. Nearly all patients (98.4%; 359 of 365 patients) reported having an FP, and 43.0% (157 of 365 patients) perceived that their FP was involved in their cancer care. Table 2 lists the factors that patients felt limited the involvement of their FP in their cancer care. The most common factor patients gave for perceiving limited FP involvement was the medical oncologist looking after all of their cancer needs, and this was also cited as the most important factor for patients reporting more than one factor.

Patient visits to the FP, home visits, and supportive services are listed in Table 3. Responses are reported for all patients and also two subdivisions of patients, those who perceived their FP as involved in their cancer care and those who did not. Sixty percent of all patients (216 of 357 patients) had seen their FP within the last 4 weeks; however, most patients (71.8%; 257 of 358 patients) did not have a follow-up appointment scheduled with their FP. More than 80% of patients (82.1%; 293 of 357 patients) had seen their FP since their cancer diagnosis. The two patient subgroups are well balanced with respect to the number of years under the care of the FP, with more than 70% of patients (72.3% who reported FP involved and 70.8% who reported FP not involved) under the care of their FP for more than 5 years. The groups also differed little regarding whether they had been seen by a palliative care physician or whether they had nurses or other care givers coming into the home. It is interesting to note that, among patients who considered their FP involved in their cancer care, 43.9% (69 of 157 patients) had seen their FP in the last week, and this fraction decreased over time, whereas the opposite trend was observed for the group who did not consider the FP involved in the cancer care.

	DISCUSSION

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In this study, we found that nearly all patients (98%) were under the care of an FP, and most (80%) were satisfied with the general medical care provided. This is encouraging given the shortage of FPs, especially ones willing to take new cancer patients into their practice.⁶ However, we found that only 43% of patients felt that their FP was involved in their cancer care, and only 28% had a scheduled follow-up appointment with their FP. These results are similar to those found in two previous Canadian surveys. One was conducted in 1986 and surveyed oncology outpatients at the London Regional Cancer Centre in London, Ontario⁴; the other, in 2000, involved a survey of a random sample of patients identified from the Manitoba Cancer Registry within 6 to 12 months of their cancer diagnosis.⁷ In both studies, nearly all patients (> 90%) reported having an FP, yet only 43%⁴ and 40%⁷ perceived their FP to be involved in their follow-up cancer care and only 32%⁴ and 47%⁷ had a follow-up appointment scheduled with their FP. It is interesting that these studies, which surveyed patients with all stages of disease in different phases of cancer care (active treatment or follow-up), from present time to 20 years ago, and at different centers in Canada, all found that patients shared similar views on the role of their FP in their cancer care.

The most common and most important reason patients gave for limited FP involvement in their cancer care was "my medical oncologist is looking after all my cancer needs." Similarly, most patients perceived their medical oncologist as the physician responsible for their cancer care. Although this may be true for patients receiving systemic therapy, at the end of life when the goal of care is to palliate distressing symptoms and provide psychosocial support, other health care professionals, including the FP, can play an important role in patient care. In addition, given the predicted future shortage of oncologists in the United States, transitioning patient care back to the FP may be one way to address this issue.⁸ The following three patterns of medical care representing increasing levels of involvement by the FP have been identified: sequential care (patient receives all medical care from oncologist after diagnosis), parallel care (oncologist looks after cancer care, and FP looks after other medical care), and shared care (FP and specialist are both involved in cancer care, with FP also looking after other medical care).³ Shared or parallel care can help ease the transition of primary care from oncologist back to the FP at the end of life because FPs are more comfortable resuming primary patient care when they have been actively involved in patient care before discharge from the cancer center.⁹

Surveys and interviews of Canadian FPs have shown that the majority believe in a shared approach to cancer patient care, with FPs acknowledging that they play an important role in providing pain management and palliative care.^5,10,11 FP support and involvement after cancer diagnosis has been associated with patients reporting higher quality-of-life scores.^7,12 Emergency room visits¹³ and hospitals deaths^14,15 at the end of life are lower for cancer patients maintaining higher continuity of care with their FP. Because home is the preferred place of death for many patients with cancer,¹⁶ one may conclude that greater FP continuity of care is associated with improved patient satisfaction and outcomes.

Several of the factors that patients raised as limiting FP involvement in their care may be ameliorated by improved physician communication, such as patients perceiving that their FP was not kept informed about their treatment at the cancer center, the FP being unaware of their cancer diagnosis, and the FP not being knowledgeable about cancer treatment. FPs have also identified lack of communication with the oncologist as a major concern in caring for cancer patients.^9,17 To convey rapid information regarding the outcome of the RPPP consultation, we complete a short, semi-structured, interim consult report and fax this to the referring physician and FP the same day the patient is seen in clinic. A survey of referring physicians found this report useful; however, because we were not sending the report to FPs at that time, their opinions were not elicited.²

Limitations of this study include the patient population surveyed. The median Karnofsky performance score was 70, indicating a fairly well palliative population, who may not have the same end-of-life needs as patients with poorer Karnofsky performance score. This may explain, in part, why only 22% of patients in this study had been seen by a palliative care physician. Patients unable to speak English were not eligible for this study, and so these results may not be extrapolated across a multicultural population such as that which exists in Toronto. Results may not be representative of patients' experiences in heath care systems outside of Canada, where FPs, oncologists, and palliative care physicians can have differing levels of involvement in patient care at the end of life. Recall bias may be at play for patients who saw their FP within the last week. These patients were significantly more likely to report that their FP was involved in their cancer care; however, they may have been seeing the FP for a reason not related to their cancer diagnosis. Finally, with regard to the statistical analyses, we were not able to include in the multivariate model the factors perceived to be limiting FP involvement in cancer care. Because 53% of patients reported the medical oncologist looking after all cancer needs as a limiting factor to FP involvement, it would have been interesting to see whether this was a significant factor when adjusting for other covariates.

We found that less than half of patients with end-stage cancer felt that their FP was involved in their cancer care. Maintaining continuity of care is important and should be encouraged, even for the 10.2% of patients who did not want their FP more involved in their care, to facilitate transition of care back to the FP at the end of life. Strategies to maintain or improve FP continuity of care can be made by addressing some of the issues raised by patients in this survey, together with concerns highlighted by patients, FPs, and oncologists in previously published reports. We found that patients were significantly less likely to perceive FP involvement in their cancer care the longer the time since their last FP visit, when they had not seen their FP since their cancer diagnosis, if they were not satisfied with the overall medical care provided by the FP, and when the FP did not have an on-call service for after-hour emergencies. Some of these issues may be difficult to modify. Patients may not see their FP frequently if they have been well before their cancer diagnosis with no ongoing health concerns. The majority of patients (82%) had seen their FP since their cancer diagnosis; however, in certain circumstances, this may not be possible (for example, patients diagnosed with cancer as inpatients and seen in consultation for urgent palliative radiotherapy before hospital discharge). Although we found that the majority of patients (80%) were satisfied with the overall medical care provided by their FP, for those patients not satisfied, it follows that they may not want their FP involved in their cancer care. Patients may blame their FP for a delay in cancer diagnosis, and it can be difficult for the FP to sustain the relationship in these situations.¹⁸ FPs not providing an on-call service could inform patients of alternatives for after-hour care or arrange for palliative home care services when appropriate, which would provide patients with on-call coverage. Medical oncologists, being the physicians patients perceive to be most responsible for their cancer care, should encourage patients to maintain contact with their FP and ensure that relevant medical patient information is quickly relayed to the FP. Future work can involve communicating with FPs regarding their opinions on caring for cancer patients and their suggestions for strategies to improve cancer patient care at the end of life.

	AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

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The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS REFERENCES

 
Conception and design: Elizabeth A. Barnes, Lawrence S. Librach, Edward Chow

Provision of study materials or patients: Elizabeth A. Barnes, Edward Chow, Lisa Barbera, May Tsao, Cyril Danjoux

Collection and assembly of data: Elizabeth A. Barnes, Grace Fan, Kristin Harris, Meagan Doyle

Data analysis and interpretation: Elizabeth A. Barnes, Grace Fan, Kristin Harris, Meagan Doyle, Lisa Barbera, Kelvin Lam

Manuscript writing: Elizabeth A. Barnes, Grace Fan

Final approval of manuscript: Elizabeth A. Barnes, Grace Fan, Kristin Harris, Meagan Doyle, Lawrence S. Librach, Edward Chow, Lisa Barbera, May Tsao, Kelvin Lam, Cyril Danjoux

	ACKNOWLEDGMENTS

 
We thank Andrea Bezjak, MD, for her help with the study design.

	NOTES

 
Supported by the Department of Radiation Oncology, Toronto Sunnybrook Regional Cancer Center, Toronto, Ontario, Canada.

Presented in part at the 20th Annual Meeting of the Canadian Association of Radiation Oncologists, September 13-16, 2006, Calgary, Alberta, Canada.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS REFERENCES

 
1. Danjoux C, Szumacher E, Andersson L, et al: Palliative radiotherapy at Toronto-Sunnybrook Regional Cancer Centre: The Rapid Response Radiotherapy Program. Curr Oncol 7:52-56, 2000

2. Barnes EA, Chow E, Andersson L, et al: Communication with referring physicians in a palliative radiotherapy clinic. Support Care Cancer 12:669-873, 2004[Medline]

3. Norman A, Sisler J, Hack T, et al: Family physicians and cancer care: Palliative care patients' perspectives. Can Fam Physician 47:2009-2012, 2001[Abstract/Free Full Text]

4. McWhinney IR, Hoddinott SN, Bass MJ, et al: Role of the family physician in the care of cancer patients. Can Fam Physician 36:2183-2186, 1990

5. Sangster JF, Gerace TM, Hoddinott SN: Family physicians' perspective of patient care at the London Regional Cancer Clinic. Can Fam Physician 33:71-74, 1987

6. Dworkind M, Shvartzman P, Alder PSJ, et al: Urban family physicians and the care of cancer patients. Can Fam Physician 40:47-50, 1994[Medline]

7. Sisler JJ, Brown JB, Stewart M: Family physicians' roles in cancer care; Survey of patients in a provincial cancer registry. Can Fam Physician 50:889-896, 2004[Abstract/Free Full Text]

8. Erikson C, Salsberg E, Forte G, et al: Future supply and demand for oncologists: Challenges to assuring access to oncology services. J Oncol Pract 3:79-86, 2007[Abstract/Free Full Text]

9. Barnes EA, Hanson J, Neumann C, et al: Communication between primary care physicians and radiation oncologists regarding patients with cancer treated with palliative radiotherapy. J Clin Oncol 18:2902-2907, 2000[Abstract/Free Full Text]

10. Wood ML: Communication between cancer specialists and family doctors. Can Fam Physician 39:49-57, 1993[Medline]

11. Gilbert R, Willan AR, Richardson S, et al: Survey of family physicians: What is their role in cancer patient care? Can J Oncol 4:285-290, 1994[Medline]

12. Mathieson CM, Logan-Smith LL, Phillips J, et al: Caring for head and neck oncology patients: Does social support lead to better quality of life? Can Fam Physician 42:1712-1720, 1996[Medline]

13. Burge F, Lawson B, Johnston G: Family physician continuity of care and emergency department use in end-of-life cancer care. Med Care 41:992-1001, 2003[CrossRef][Medline]

14. Burge F, Lawson B, Johnston G, et al: Primary care continuity and location of death for those with cancer. J Palliat Med 6:911-918, 2003[CrossRef][Medline]

15. Burge FI, Lawson B, Johnston G, et al: Health care restructuring and family physician care for those who died of cancer. BMC Fam Pract 6:1, 2005[Free Full Text]

16. Higginson IJ, Sen-Gupta GJ: Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. J Palliat Med 3:287-300, 2000[CrossRef][Medline]

17. Wood ML, McWilliam CL: Cancer in remission: Challenge in collaboration for family physicians and oncologists. Can Fam Physician 42:899-910, 1996[Medline]

18. Sisler JJ: Delays in diagnosing cancer: Threat to the patient-physician relationship. Can Fam Physician 49:857-859, 2003[Free Full Text]

Submitted June 29, 2007; accepted September 14, 2007.

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