The National Coalition for Cancer Survivorship (NCCS) was founded in 1986 to make cancer patients view themselves as survivors, not victims, and to address the many issues that patients encounter [ Read More ]
September 2016 VOL 7, NO 8
Patient and Primary Care Practitioner Confidence in and Perceptions of Cancer Treatment Transition and the Shared Care Model of Cancer Care
Chantelle Carneiro, MSc1; Janet Ellis, MD2; Simron Singh, MD2; Matthew C. Cheung, MD2
1Chicago Medical School, Rosalind Franklin University of Medicine and Science, North Chicago, IL, USA
2Odette Cancer Centre, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada
Purpose: To examine cancer survivors’ satisfaction in the transition of care from oncologist to primary care physician (PCP), to identify patient and PCP concerns with the transition process, and to investigate any perceived barriers to effective transition.
Methods: Two separate surveys were composed: one for patients discharged from the transition care clinic (TCC) and another for their respective PCPs. The interviews were conducted over the phone for patients, and via fax or phone for PCPs. Responses were collected and anonymized.
Results: Ninety-five percent of patients (n = 21) were confident with their oncologists prior to discharge, and 76% believed their PCP was knowledgeable about appropriate follow-up care for cancer survivors. Twenty percent of PCPs (n = 10) agreed they should take full responsibility for survivorship care; 90% agreed they did not receive additional training since medical school on the long-term effects of cancer treatments and appropriate follow-up.
Conclusion: Patients were satisfied with the transition of care from the TCC to their PCP and found the summary care plans advantageous. However, PCPs continue to remain hesitant to take on the survivorship care of cancer survivors.
Implications for Cancer Survivors: Appropriate transitions and summary care plans between PCPs, nurse navigators, and oncologists help decrease anxiety and confusion regarding a cancer survivor’s long-term goals
Prior research has consistently shown a significant communication barrier between oncologists and primary care physicians (PCPs), particularly at times of transition of patient care.1-3 This gap in communication has many repercussions: a direct impact on patient satisfaction and health, unnecessary investigations and referrals, and excessive financial burdens on the healthcare system.1,2 In particular, miscommunication during the transition from the acute phase of care within the cancer center to the primary care setting can be particularly difficult for cancer survivors at a critical point in their care. There is a paucity of data, however, regarding patient and PCP perceptions and interprofessional communication within this transition period.
Involving PCPs is believed to be critical for ensuring equal access to high-quality, cost-effective care for a diverse population of survivors because it addresses the needs of an aging population with increasing rates of cancer and the limited workforce of oncology specialists.1 A 2009 national survey in Canada revealed that family doctors were willing to assume exclusive medical responsibility for follow-up care 2.5 to 3.5 years after cancer diagnosis.4 However, current studies of cancer surveillance practices demonstrate that PCPs feel ill-equipped to manage the complexities of survivorship care, and in turn, patient satisfaction and outcomes are adversely affected.3 Therefore, a proper plan for adequate transfer of patient care is necessary.
A transition care clinic (TCC) was initiated at the Odette Cancer Centre at Sunnybrook Health Science Centre for a select number of colorectal cancer, Hodgkin lymphoma, and non-Hodgkin lymphoma survivors. Patients and PCPs were provided with a dictated and hand-written treatment summary, as well as a future care plan. A quality improvement study was conducted to examine the process of transition as patients were discharged from the cancer center back to the care of their family practitioners. We sought to examine patient satisfaction regarding transition of care, to identify patient and PCP concerns, and to investigate perceived barriers to effective transition.
Materials and Methods
Survey Instrument Development
A patient questionnaire was adapted from 2 instruments previously validated to assess transition of patient care. Several items were taken from the Patient Continuity of Care Questionnaire (PCCQ) created by Sisler et al, designed to assess “patient perceptions of continuity of care around the time of discharge from hospital to the care of community providers.”4 Twelve items regarding care before discharge from a transition clinic were adapted from PCCQ (Q1-Q12), along with 5 regarding postdischarge care (Q13, Q17-Q20). In addition, adapted questions from a study by Mao et al (Q14-Q16) were included to examine patient perceptions regarding primary care delivery of survivorship care.1 The final components of the questionnaire addressed patients’ opinions on the TCC’s summary plans and their experience (Q21-Q26).
The questionnaire for the PCPs was designed to collect information on current transition care experiences, the potential for education, and areas of improvement. We used the Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS) that was developed by Potosky et al and cosponsored by the National Cancer Institute.5 Its goal was to examine and compare the attitudes, knowledge roles, and usual practices of PCPs and oncologists.5 We chose 5 items from SPARCCS (Q1-Q5) to elucidate family physicians’ perceptions of cancer care and how to improve transition and follow-up. Three items on the questionnaire addressed physician education (Q6, Q7, and Q10). Finally, 2 qualitative questions were added that allowed physicians to describe what they believed to be the ideal follow-up (Q8, Q9).
Drafts of the surveys were piloted with the intention of reviewing the instrument’s content validity, comprehensibility, and clarity. Participants developing the pilot included 2 oncologists, a psychiatrist, and a project coordinator for the TCC. Participants were asked to comment on whether there were enough items to cover the objectives of the study and whether each item pertained to an objective (content validity). Items were also vetted to eliminate or modify any ambiguous, double-barreled, or value-laden questions. Pilot participants were asked to ensure that items were grammatically correct and understandable.
Individuals were chosen from a list of participants in the TCC at the Odette Cancer Centre. This group included patients who underwent treatments for colorectal cancer, Hodgkin lymphoma, or non-Hodgkin lymphoma. Inclusion criteria: patients who were successfully discharged to their PCP from the TCC, and patients or caregivers who spoke English and could take the survey over the phone. Exclusion criteria: patients with insufficient contact information and patients who could not speak or understand English. All patients were reached by phone, as were the physicians. Inclusion criteria for physicians included: having a previously mentioned patient successfully discharge from the TCC back to their practice, and having the appropriate contact information available to the researcher. There were no exclusion criteria for physicians. After 3 attempts, both patients and physicians were classified in the data as “unavailable”; those who refused to participate had any stated reason documented in the data collection.
The study involved a total of 26 questions for the patient or caregiver, conducted over the phone for a duration of 10 to 15 minutes. Twenty family physicians responsible for the follow-up care of the aforementioned patients were contacted by phone to complete a 4-minute questionnaire. Some physicians completed phone interviews while others had questionnaires faxed to their offices. Physician offices were also contacted a total of 3 times. The surveys were administered over a course of 4 weeks.
Data were presented descriptively. Likert scale options of strongly agree/agree, as well as strongly disagree/disagree, were combined into positive and negative feedback scores, respectively.
We identified 25 patients who took part in the TCC study and had valid contact information. From this total, 21 patients responded to the questionnaire over the phone (84.0% response rate). The 4 remaining patients were unsuccessfully contacted after 3 attempts.
From the 25 patients indicated above, contact information for their family physicians was obtained for 20 PCPs, who were then surveyed by phone or fax. Ten physicians responded (50.0% response rate), 1 via telephone, 9 via fax. Of the remaining 10 physicians, 5 did not respond to the faxed survey that was requested and 5 did not want to participate.
Patient experience and education with oncologists prior to discharge from the TCC
Of the survivors interviewed, 95% were confident in their providers before discharge, and 90% believed a well-developed and realistic follow-up plan was prepared and explained to them. Ninety percent also believed they had sufficient information on their prognosis, and 86% of patients believed they were provided with clear information on their diagnosis before discharge (Figure 1).
Sixty-two percent of patients agreed that their physicians gave them sufficient information on symptoms that required urgent medical attention, and whom to contact for it. Fewer patients (52%) agreed that nonurgent symptoms were explained to them, as well as how to cope with them. Fifty-seven percent reported having complete information on their medications or dietary instructions. Only 38% had information on recommendations and restrictions regarding activities, exercises, and aids.
When asking patients whether they fully understood the treatments and/or surgeries they had for their cancer, 100% said “yes.” Regarding personal medical records, 76% of the patients agreed that they had their treatments recorded for them to keep. In relation to their experience at the TCC, 48% believed it helped reduce their anxieties about future healthcare needs. About 81% of patients were given dates on follow-up appointments, 52% were informed of ongoing treatments that might be needed, and 71% received information on patient resources and emotional support (ie, peer support groups, community organizations, etc).
Patient confidence in the communication during transition
Forty-three percent felt there was good communication between their PCP and oncologist since their cancer diagnosis.
Patients’ interactions and satisfaction with their PCP after discharge from the TCC
Eighty-six percent were satisfied with the opportunity to speak and raise questions with their PCP, and 71% felt confident with their PCP’s ability to diagnose and treat symptoms associated with their cancer or cancer therapy (Figure 2).
Patient confidence in their PCP’s ability to manage their cancer follow-up
After discharge, 62% of patients had the opportunity to review their treatment plan with the family doctor, and 81% believed their plan had been followed and/or adjusted as necessary since discharge. The majority (76%) believed their PCP was knowledgeable about the appropriate follow-up care for cancer survivors (Figure 1).
Eighty-one percent agreed that their physician helped them live a healthier life by discussing diet, exercise, and weight management. About 76% of patients were satisfied with the emotional support provided by their PCP.
In response to the qualitative questions, most patients (n = 13; 62%) had positive comments in relation to the usefulness of a summary plan. They found it “very useful,” “helpful,” and they “liked having the dates to follow.” The summary plan helped “ensure when to do follow-up exams," and patients stated it "was reassuring to have something to look back on.” Several remarked on how much they appreciated knowing which tests they needed to take. Regarding additional concerns that patients had, many issues related to factors affecting convenience (difficulty parking at Odette Cancer Centre, long travel times), what to do after 1 year (the summary plan does not address this), and a few patients admitted their PCP had not received the discharge papers prior to their first appointment.
Primary Care Practitioner Participants
Physicians’ attitudes with regard to cancer care in their current setting
Only 20% of PCPs agreed with the statement that family physicians should have primary responsibility for the care of cancer survivors.
Physicians’ attitudes with regard to transfer of information and cancer care
With regard to transferring patient care responsibilities, 20% experienced difficulties, and 40% sometimes experienced difficulties. Seventy percent of PCPs felt that information was nearly always received from the oncology specialist in a timely manner, but explicit follow-up care plans were only sometimes received by 40% of PCPs, and 40% stated they rarely received explicit follow-up care plans for their patients (Figure 3).
When asked if family physicians had a specific discussion with their cancer survivors regarding recommendations for future care and surveillance, 20% sometimes did so and 50% admitted they rarely did so.
PCPs’ knowledge regarding cancer care and desire for continuing education and explicit follow-up plans
The vast majority (90%) of PCPs said they had not received training/instructions since medical school regarding the late or long-term effects of cancer treatments, and the remaining 10% (n = 1) said “yes, somewhat.” Most (83%) identified educational needs since taking on the responsibility for follow-up care of their patients with cancer, and several indicated in their written opinions that they would like to attend more workshops or have additional resources available to them. When asked for suggestions on improvements to transition, many PCPs requested timelines on exactly when to do certain tests, frequency of exams, what future cancer/healthcare issues to watch for given the particular cancer the patient had, specific screenings and follow-up instructions from the oncologist including long-term plans, as well as instructions on when to consult with the oncologist (ie, warning signs).
Many physicians agreed that good communication and follow-up were key for successful transition from oncologist to PCP, as well as easy access to the oncologist should there be any questions/concerns, and the ability to refer the patient back without any difficulties if necessary.
A plethora of research has shown that a lack of communication during times of transition leads to lapses in care, and this in turn affects patient outcome and satisfaction.6-8 A study on breast cancer survivors’ perception of their quality of care indicated that most patients strongly endorsed PCP follow-up but felt communication between PCPs and oncologists was poor.9 Once active treatment was complete, many patients indicated feeling confused and ill-informed regarding their future medical care.9 Patient satisfaction continues to remain low with regard to the communication between oncologists and PCPs.9,10 A survey in Canada discovered that only 16% of patients believed a “shared care” plan existed between their oncologist and family physician.11 In contrast, our data revealed that most TCC patients received proper information on their diagnosis and prognosis before discharge, and the majority of patients were satisfied with the care they received from their PCP. Participants believed adequate communication existed between them and their healthcare team. The large majority of our patients were given dates on follow-up appointments, and most found that their PCP was knowledgeable about the appropriate follow-up care for cancer survivors. The latter finding coincided with a 2014 study revealing that there was no significant difference in the likelihood of rating care as “high quality” between survivors who identified an oncology specialist or a PCP as their main follow-up care physician.12 Unfortunately, this confidence in their PCPs does not correlate with the reality that most PCPs do not feel comfortable taking on the cancer survivorship care of their patients, as was seen in our study and further elaborated in our discussion.
Regarding treatment summaries, only 19.9% of patients in the study by Weaver et al received treatment summaries.12 In comparison, all our participants received a care plan, and many praised the usefulness of having the dates and schedules available in advance. Our patients felt better informed and more prepared for their future survivorship goals, which contrasts to recent literature stating the opposite (a 2015 study indicated care plans increased patient concerns, led to more symptoms, and worsened emotional impact).13 Three patients even voluntarily passed on their summary plan to their family physician, thereby creating a “back-up” if a discharge form was not promptly sent to the PCP from the Odette Cancer Centre. In addition, most TCC patients were confident in their providers before discharge and believed a well-developed and realistic follow-up plan was prepared and explained to them. Such actions undertaken by the TCC have shown an improvement in patient satisfaction, if one were to compare our results with patient feedback in previous studies.9-11 Overall, patients remained confident in the doctors undertaking their treatment plans and follow-up, in particular their PCPs, and appreciated the information that was given to them before discharge.
With regard to the survey feedback from family physicians, the main issue continues to be poor communication and lack of adequate information and/or knowledge on the subject of cancer survivorship care. This corroborates with a qualitative study conducted by Neilson et al in which doctors surveyed felt they lacked specialist knowledge and were uncertain regarding cancer treatment plans.14 A second study found that half of PCPs did not feel comfortable with cancer surveillance guidelines or the training they had received in this area.1 A large-scale study in 2007 found that only 43% of PCPs were comfortable following standard guidelines for cancer recurrence.10 It is evident that this situation continues to persist in the medical field, with most of our respondents denying additional education on long-term cancer care since graduating from medical school, and nearly all physicians admitting to educational needs since taking on the care of cancer survivors. When provided the option of additional focus groups aimed at transition care from cancer center to the community, many of the PCPs surveyed showed interest. This indicates that most PCPs are willing to expand on their knowledge of cancer survivorship, and future programs should be in place to fulfill this need. In doing so, PCPs can offset the follow-up strains on oncologists, provide valuable feedback to their patients (thereby reducing patient confusion and anxiety), as well as order appropriate tests when a summary follow-up plan is not sent to them. Recent investigations have shown that oncologists were more likely to recommend significantly longer and more expensive follow-up routines for their patients compared with PCPs,15 but the latter were more likely to order nonrecommended blood and imaging tests for detecting cancer recurrence.5 Hence, appropriate education of family physicians would ensure efficient testing and decrease the cost of healthcare for cancer survivorship.
In addition to creating more cancer survivorship workshops geared toward PCPs and nurse navigators, our small study hints toward a similar system of patient follow-up and discharge employed by the TCC as beneficial for cancer centers. This program helps reduce patient stress and increases communication between oncologists and PCPs. It is recommended that transitional care services should include the following: health-related education, health surveillance and screening, management of cancer-related complications, and psychosocial support relevant to the patient’s needs.16 In our survey, the majority of PCPs suggested detailed surveillance/follow-up plans to be provided by oncologists within an ideal transition care package—such a plan would include specific intervals necessary for follow-ups, detailed screening instructions, and frequency/order of particular tests (lab work, imaging, etc). According to the PCPs surveyed, a successful (cancer patient) transition is one that includes strong communication, proper and timely information, and the ability to quickly contact the oncologist with questions or problems if they arise. The role of nurse navigators in oncology is one that can be further expanded within the TCC model. By providing pertinent medical information prior to discharge (follow-up imaging, warning signs and symptoms, long-term side effects of radiation and/or chemotherapy, etc), the nurse navigator can alleviate many fears a patient may still harbor about recurrence, while also having ample time to discuss any questions or concerns the cancer survivor may have. Furthermore, the nurse navigator may be seen as a more approachable and potentially quicker point of communication for the patient, or PCP, if any issues were to arise in the future. By implementing detailed summary plans upon discharge and involving oncology nurse navigators or oncologists during transition, PCPs may have some of their knowledge gaps covered, and the continuity of care would further increase patient confidence and satisfaction in their physicians.
Patient satisfaction is shown to increase when a detailed summary plan of their survivorship care is explained and given to them. However, PCPs are still dissatisfied they must take on the survivorship care of cancer patients, because the majority of family physicians do not have the knowledge or training to do so. To address this gap, further resources and workshops should be created to aid the PCP in caring for his/her cancer survivors. In addition, oncologists and oncology nurse navigators at cancer care centers should provide discharge summaries similar to those created by the TCC to guide PCPs and reinforce continuity of care.
Compliance with Ethical Standards
No conflicts of interest exist with any of the authors of this study.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
Funding: There was no funding for this study.
- Mao JJ, Bowman MA, Stricker CT, et al. Delivery of survivorship care by primary care physicians: the perspective of breast cancer patients. J Clin Oncol. 2009;27:933-938.
- Del Giudice ME, Grunfeld E, Harvey BJ, et al. Primary care physicians’ views of routine follow-up care of cancer survivors. J Clin Oncol. 2009;27:3338-3345.
- O’Brien MA, Grunfeld E, Sussman J, et al. Views of family physicians about survivorship care plans to provide breast cancer follow-up care: exploration of results from a randomized controlled trial. Curr Oncol. 2015;22:252-259.
- Sisler J, Taylor-Brown J, Nugent Z, et al. Continuity of care of colorectal cancer survivors at the end of treatment: the oncology-primary care interface. J Cancer Surviv. 2012;6:468-475.
- Potosky A, Han P, Rowland J. Differences between primary care physicians’ and oncologists’ knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med. 2011;26:1403-1410.
- Wilson S, Anderson M, Meischke H. Meeting the needs of rural breast cancer survivors: what still needs to be done? J Womens Health Gend Based Med. 2000;6:667-677.
- Ezendam NP, Nicolaije KA, Kruitwagen RF, et al. Survivorship care plans to inform the primary care physician: results from the ROGY care pragmatic cluster randomized controlled trial. J Cancer Surviv. 2014;8:595-602.
- Hewitt ME, Bamundo A, Day R, et al. Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. J Clin Oncol. 2007;25:2270-2273.
- Shadmi E, Admi H, Ungar L, et al. Cancer care at the hospital-community interface: perspectives of patients from different cultural and ethnic groups. Patient Educ Couns. 2010;79:106-111.
- Nissen M, Beran M, Lee MW, et al. Views of primary care providers on follow-up care of cancer patients. Fam Med. 2007;39:477-482.
- Aubin M, Vézina L, Verreault R, et al. Family physician involvement in cancer care follow-up: the experience of a cohort of patients with lung cancer. Ann Fam Med. 2010;8:526-532.
- Weaver KE, Aziz NM, Arora NK, et al. Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers. J Oncol Pract. 2014;10:e231-e239.
- Nicolaije K, Ezendam NP, Vos MC. et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33:3550-3559.
- Neilson S, Kai J, Macarthur C, et al. Caring for children dying from cancer at home: a qualitative study of the experience of primary care practitioners. Fam Pract. 2011;28:545-553.
- Earle C, Grunfeld E, Coyle D, et al. Cancer physicians’ attitudes toward colorectal cancer follow-up. Ann Oncol. 2003;14:400-405.
- Nathan PC, Hayes-Lattin B, Sisler J, et al. Critical issues in transition and survivorship for adolescents and young adults with cancer. Cancer. 2011;117(suppl 10):2335-2341.
Dear Navigators, This fall, the Journal of Oncology Navigation & Survivorship (JONS), the official publication of the Academy of Oncology Nurse & Patient Navigators (AONN+), will bring you the best [ Read More ]