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This supplement explores how the interfaces between primary and subspecialty care for cancer provide insights that could help close the gap between what is known about good medicine and what is done in medical practice. The articles presented here started as a discussion of cancer care among primary care and subspecialty care providers in the United States and Canada at the October 2007 North American Primary Care Research meeting in Vancouver, Canada. The discussion highlighted the challenge that simply providing coverage and a system to obtain care does not insure closure of the chasm between what is known and practiced in medicine. We hope that sharing this discussion and expanding the scope of our considerations will contribute to closing the quality chasm identified by the Institute of Medicine (IOM) in its 2001 report, Crossing the Quality Chasm: A New Health System for the 21st Century (1).
Since the series of classic reports by the IOM (1,2), consensus has been growing that health care is not realizing its full potential in the United States (1,3). Cutting-edge advances in medicine appear in leading American journals on a regular basis, but the United States is ranked 13th in infant mortality and last among 19 industrialized nations in its ability to reduce mortality because of avoidable causes of death (3,4). The only measure of health care where the United States leads is in cost per capita (5). Although research has examined our system of care, it must be accelerated and focused to identify actionable improvements.
Critiques of the US health-care system emphasize the Nation's poor performance compared with other developed countries. One obvious factor is that 19.6% of the non-elderly adult population in the United States does not have health insurance at any given moment, and this affects their ability to obtain care (6). Recommended improvements to the US health-care system have emphasized reducing costs of care and increasing insurance coverage. Creating a method of reimbursement that allows all citizens to receive care and aligns incentives and practices is critical to improving the health of Americans. However, the process of care for those who do have access also must be addressed to achieve high-quality outcomes (7). The IOM reports on health care in general and cancer specifically make a strong case that health care in the United States is a fragmented and uncoordinated process that does not deliver the quality that is possible with what we know in medicine today (1,2). Achieving improvements in care must therefore consider how to expand both the pool of people who have access to care and the process of care once they receive it.
The means forward to a successful approach to care is not entirely clear. Recognizing the limitations in the US health-care system, the IOM reports Crossing the Quality Chasm and Ensuring Quality Cancer Care identify six principles that must be the ultimate goal of systematic change to improve care. These principles are safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity (1,2). The reports also note that no prescription exists for how to carry out such systematic change (1,2). Since the IOM reports were published, many have considered this challenge (1,2,8–10), and their work has led to a recognition that care is affected by multiple levels of influence.
The current health-care reform effort in the United States aims to ensure that the majority of people have access to a system of care in which they can obtain coverage regardless of employment and without fear of losing it if they become sick or unemployed. However, in Canada, where such a system of care has been in place for many years, the mere fact of having a system does not ensure that it delivers evidence-based care that meets the principles outlined by the IOM report. Canada ranks 15th out of 17 in infant mortality and 13th out of 18 among industrialized nations in its ability to reduce mortality because of avoidable causes of death (4,11). To make progress in achieving the principles set out in the IOM report, we need to clarify how a health-care system can not only ensure coverage but also facilitate the process of care. Improvements have been demonstrated in breast cancer screening for ambulatory patients and myocardial infarction and pneumonia for hospitalized patients, but we need to address broader systematic changes across care in general. The entire spectrum of cancer care from screening end of life is a step in that direction. (12,13).
In this supplement, we consider the process of cancer care from the perspective of the people responsible for providing that care, and we include insights from practitioners in Canada and the United States. We also include the perspectives of patients who are affected by the process. We define “process of cancer care” as the sum of the types of care, transitions, steps, and interfaces that must be traversed to receive health care across the cancer continuum (Table 1). Furthermore, we define “system of care” as one that not only provides coverage but also develops an infrastructure for communication that facilitates care delivery consistent with the IOM's six principles. Care across the cancer continuum encompasses different types of care, including risk assessment, detection, diagnosis, primary treatment, survivorship and surveillance, and end-of-life care (Figure 1) (10).
Each of these types of care and the transitions between them involve steps that pose different challenges to individual patients, families, and physicians. For example, detection may occur through screening or testing following symptomatic presentation. Screening and symptomatic presentation each involve multiple steps that require coordination and a different balance of technical medical skills and logistical and emotional support. When detection of cervical abnormalities occurs by screening, for example, it often starts with a Papanicolaou test in primary care and repeated primary care visits to clarify the persistence of any abnormality. Persistent and/or severe abnormalities lead to a referral to an obstetrician/gynecologist because he or she has the expertise required to make the final diagnosis. Finding breast cancer through screening is different, however, because it involves an imaging technique that cannot be done by primary care physicians. Diagnosis of breast cancer may involve multiple steps, such as referral to a radiologist for further imaging or to a surgeon for a biopsy. Each visit is a step in screening or symptomatic detection, and every type of care involves multiple steps and interfaces.
Adding to the complexity of cancer care through these phases is the multiplicity of providers and institutions that are involved. At the beginning and end of the cancer continuum, most care involves primary care providers, whereas the care of subspecialists is central to diagnosis and treatment. After primary treatment is complete, care may move back and forth from primary care to subspecialty services if an abnormality arises or a nononcology problem needs attention. Toward the end of life, care may involve the oncologist and the primary care provider, as well as other organizations such as hospice. Central to the process of care across the continuum is the transfer of information and responsibility from one institution to another, from one physician to another, from physicians to staff, and from providers to patients and families. Providers and patients must share an understanding of the disease, the therapy, and its consequences, and they all must know who must do what and when. The exchange of information and responsibility is particularly important during transitions in care when new providers or care organizations become involved and new care decisions become necessary. Therefore, the interfaces of care and coordination among providers and institutions are critical to a successful process of cancer care. For example, studies of cancer have shown that whether people get screened accounts for a higher proportion of late-stage cancer than does the quality of the screening itself and that follow-up after an abnormal screen also is an important factor (14,15).
Figure 2 shows the types of care and the triangles of communication that are established among cancer patients and their providers (16). The communication triangles pose challenges for patients and physicians faced with coordinating care because sharing a common understanding about what actions are required and what they mean is often necessary to successfully manage the interfaces and transitions. This challenge is made more complex because community service providers, patients’ families, and physicians’ staff also are critical to care and create additional triangles of communication that challenge coordination. Note that Figure 2 also highlights that the patient is often the central repository of information. The fragmented system of independent practitioners and offices in the United States challenge easy communication and coordination among providers, thereby placing patients in the potentially awkward role of coordinating their care by default (17,18).
The thesis of this supplement is that coordination and communication across the interface of primary and subspecialty care and the transitions between care types are critical windows into opportunities to improve the quality of patient care. This is true in centrally organized health-care systems, such as Canada, where the many transitions in cancer care lend themselves to potential failures, and even more so in fragmented health-care system, such as the United States, where quality lapses are frequent.
These interfaces are primarily human but also include connections between organizations and entities, such as primary care offices and subspecialty care offices, ambulatory care and hospital care, and primary and subspecialty care with other support services. Although we focus on providers in the discussion of interfaces, this is shorthand for the groups of people (receptionists, nurses, lab technicians, radiology technicians, physical therapists, nutritionists, etc.) in the primary and subspecialty arena who together influence the care at the interface. Preserving the integrity of patient information and improving the potential quality of patient care across these interfaces and within each type of care are the major goals for care in the 21st century (2).
Considering the interfaces among providers and between the settings of health-care delivery forces us to consider the system in which care occurs. As noted earlier, factors in practice, health-care organizations, the policy environment, and the culture of the people seeking and delivering care all affect the care process that is at the center of a multilayered system of care that many have described (7,10,19–21). In this supplement, we use an ecological framework (Figure 3) to consider the multilayered influences on the interfaces of care (22,23). In this framework, a variety of environmental factors can influence productive interactions between provider teams and patients (19,22,23).
Much has been written about the problems with specific types of cancer care—the strength and weaknesses of screening tests, evidence reviews for diagnostic and treatment regimens, recommendations for and against posttreatment surveillance. However, attention to the interfaces within and between these types of care has been missing. We hope that the articles in this supplement begin to fill this gap. Improving quality of care requires consideration of the types of care, the steps and transitions within care, and the interfaces that occur during care. Although the interfaces are emphasized in this supplement, the reality is that we must improve the steps within types of care and the interfaces to improve care overall. An emphasis on both these elements turns them into an entire care process. It also offers many opportunities to improve care without necessarily considering issues of reimbursement and financing. Some have suggested that, in fact, financial reform cannot occur without first considering changes in the process of care (24).
While considering the organization of care and communication among providers is critical to improving care, it also is important to recognize that the ultimate goal is to improve the lives of the people who seek care. For this supplement, we have interviewed six people who are long-term survivors of cancer treatment (Table 2, Appendix 1). Their stories are not intended to be representative of what occurs on average. Rather, our intention is to give readers and the supplement authors a chance to view the human stories that are behind the care we are trying to affect and to give the people behind those stories the chance to comment on the issues raised by the articles in this supplement. As suggested by the IOM report Crossing the Quality Chasm, a major goal of improving care is considering how to put patients back in the center of what providers do (1). A thumbnail sketch of each case is provided in Table 2, and their stories are elaborated in Appendix 1. We have asked each of them to comment on articles in the supplement, and their comments can be found in section II as described below.
This supplement focuses on the interfaces of primary and subspecialty care and asks five questions:
In this introductory article (section I), we outline the continuum of cancer care, point out that this supplement began as a presentation involving a patient as well as physicians from Canada and the United States, and present the thesis that examining the interfaces of providers in the cancer care offers an insight into how to address the quality chasm in health care.
In section II of the supplement, the authors consider the five questions as they address the major phases along the continuum of care and the interfaces between providers during each: Nekhlyudov and Latosinsky (25) address Symptoms through Diagnosis, and Sussman and Baldwin (26) consider Diagnosis through Treatment. Grunfeld and Earle (27) discuss Treatment through Survivorship, and Han and Rayson (28) examine End-of-Life Care. This section describes the care process, and so we asked patients and the clinician-authors to read this section and comment.
The articles in section III of the supplement consider the context (Figure 3) in which cancer care is provided and how that context has multiple levels that can be shaped to influence the types, transitions, steps, and interfaces in care. Anhang Price et al.(29) present a literature review on measures of organizational structures and processes in cancer screening and assess how they address steps and interfaces of cancer screening. Zapka et al. (30) then consider how the multiple layers of the health-care system can influence interfaces during the follow-up after an abnormal screen. These two articles by Anhang Price et al. (29) and Zapka et al. (30) reinforce the idea that interventions to address interfaces will need to consider the multiple levels of the care context to achieve improvements. The next article, by Fennell et al. (31), considers cancer treatment and examines how one common approach, the multidisciplinary care team, has evolved to affect the interfaces of care. Murray et al. (32) then discuss the range of study designs that can be used to test changes in these influences, whereas Hade et al. (33) report intraclass correlations in measures relevant to the multilevel intervention studies. One potential intervention is commonly considered to be information technology. Hesse et al. (34) directly address whether that is a reasonable expectation. We close the supplement by revisiting the five questions and proposing an agenda for future research. Without surprise, that agenda encourages further work to characterize and intervene at the interfaces of care across the cancer continuum.
This work was funded by the National Cancer Institute through direct salary, and publication costs.
The articles in this supplement focus on the interfaces between primary care providers and oncology specialists throughout the continuum of cancer care. However, attention to the patients who are at the center of that care is the primary motivator for this supplement because improved care of patients is the ultimate goal.
To ensure that the patient perspective was highlighted, we interviewed six long-term cancer survivors. We were interested in hearing about their experiences through the cancer care continuum. Though we recognized that they were not a representative group, we thought that their perspectives on the issues raised by the authors of articles included here would be valuable addition to the supplement.
One finding that struck us was that even within this small group, the individuals took highly diverse routes through cancer care and that their entrance into cancer care largely dictated the rest of their journeys. We have grouped their stories in this way to highlight this diversity.
This finding suggests that a broad perspective is needed when considering ways to improve the interfaces of care, for the interfaces may involve a large and diverse number of players beyond primary care providers and oncology specialists. Another finding, clearly evident in these stories, is the degree to which these survivors felt that they were the main coordinators of their care and main repositories of records and information about their care.
In 2004, while in Connecticut on vacation with her family, Ms V experienced severe rectal bleeding and went to a local hospital. Within 24 hours of her admission, Ms V had a colonoscopy and a recommendation for surgery, either immediately in Connecticut or the following week at home in Maryland. Ms V chose to have surgery—a left hemicolectomy—the following day. The surgeons removed 12 inches of her colon, including a bleeding polyp. She was diagnosed with stage I colon cancer. Ms V was 32 years old with no family history of this disease.
Ms V remained in Connecticut to recover from the surgery. Upon her return to Maryland, her challenge was to inform her primary care physician of her diagnosis and surgical procedure and to establish ongoing care in her home area. Because of her unusual situation, she circumvented the traditional channels of referral to a specialist for diagnosis. As a result, Ms V considers herself fortunate to work at a biomedical research institution with colleagues who have been an invaluable support and information resource. She refers to herself as the “information manager” as she, and not her primary care provider, is responsible for managing her continued care and is who communicates with gastrointestinal disease specialists about her medical diagnosis and clinical experience.
Two years after her surgery, Ms V switched to a new primary care provider. This provider asks about her cancer diagnosis and experience. However, he does not have an active role in managing her follow-up, as she had already established this care before becoming his patient. Ms V schedules a colonoscopy every 1–2 years and interacts with her gastroenterologist only at those procedures. She does not need follow-up with an oncologist because of the nature of her case.
In 2006, Ms V married and had a child in 2009. Her need for regular colonoscopies affected the timing of her pregnancy and decisions about breast-feeding and will do so again for any future children. In addition, Ms V chose to discontinue taking a daily aspirin, prescribed to help prevent future polyps, during her pregnancy and breast-feeding because of the risk to her child. Of current concern are the two different opinions she has been given about her children's risk of developing colon cancer and when they need to begin screening.
On December 27, 2006, at age 58, Ms U had a routine screening mammogram. Nine days later, on a Friday, January 5, 2007, she received an unsigned letter from the radiology department of the laboratory asking her to come in for further evaluation—a right breast special view mammogram. As she was reading the letter and also checking voice mail, she heard a voice message from her long-time gynecologist, which said, “Call me back on my cell when you get this message.” Ms U was concerned and immediately called her gynecologist, who told her that she had been notified by the laboratory of an irregularity on her mammogram. Ms U then called the number on the letter to make an appointment.
She was told that she could have an appointment in 30 days. When Ms U called the radiologist's office on Monday, she spoke with the office manager, vigorously protested the 30-day wait and was given an appointment in the next few days. At this appointment, she received a diagnosis of breast cancer.
The next step was an appointment with a surgeon recommended by the radiologist, a breast cancer survivor. The gynecologist called the surgeon on M. U's behalf to get her a more timely appointment than she was given when she called. Despite the surgeon's somewhat brusque, no-nonsense manner, Ms U and her husband were impressed with her highly organized presentation and by the fact that the surgeon already was familiar with her case. They felt that she was patient-centered and clearly communicated treatment options. “She did something I never saw a doctor do before,” says Ms U. “She told us that we did not need a note pad and began to write down everything for us in an organized fashion on her own notepad.” As she reviewed Ms U's case she said things like, “This is what this means and this is what we plan to do.” Ms U's reports that the surgeon said, “I am not an oncologist but this is what might be recommended. You can think about it and when your oncologist speaks of it you wouldn’t have heard it for the first time.” The surgeon answered all of Mr and Ms U's questions, and her responses were comprehensive. Ms U felt supported, and the experience was comforting to understand everything in an orderly fashion. She was very prepared to talk to the oncologist after speaking to the surgeon.
Ms U had a biopsy, a lumpectomy, and 7 weeks of radiation therapy throughout the first half of 2007. Within 3 weeks of the surgery, she noticed lumps, called cording, which are clots in the lymph passages caused by the change in one drainage system as a result of the surgery. No one had mentioned this as a possible postoperative complication and this concerned Ms U. She spoke to a nurse at the surgeon's office, who recognized the symptoms and suggested that she see a physical therapist who specialized in lymphedema. She was not comfortable with first office's atmosphere, organization, or staff, so she switched to the lymphedema clinic at the hospital where she had had her surgery.
Reflecting on communication among her health-care providers, Ms U noted that her gynecologist, not her internist, acted as her primary care provider during the diagnostic and treatment phases. At different points in the care continuum, she spoke with or saw her gynecologist, surgeon, and radiologist. One major concern she had about her experience with cancer care was the need to tell her story to many providers at each interface in the care continuum. For example, she told her story multiple times to the surgeon, oncologist, radiologist, intake nurses, scan technicians, and staff at the lymphedema clinic. She also needed to tell her story multiple times at the radiology center because the different nurses caring for her there needed her to start over from the beginning of her diagnosis.
Ms U's son also has had cancer, and she learned from that experience to request her own medical record. She now has many boxes of her records and is grateful to have them because she occasionally needs to refer to them. When asked whether the roles of her doctors were clear, Ms U felt that they were clear but isolated and that she acted as the “quarterback” of her care in terms of making final decisions, collecting and analyzing information, and acting as main advocate for her care. She is not sure whether any of the doctors would have stepped into that role if she had not. In contrast to her own approach to her care, Ms U notes that her mother, who recently died of pancreatic cancer, relied on her primary care provider to manage her cancer treatment and follow-up care as well as her noncancer care and she asked very few questions.
Currently, Ms U sees her oncologist, radiologist, and gynecologist and gets a mammogram, all once a year. She tries to space these appointments so she sees someone quarterly. This works well for her because she knows she is being seen often. She also has consulted with an oncology nutritionist, who has educated her on topics that none of her other providers told her about. Ms U feels that one of her medical practitioners should have told her these things, particularly about issues related to eating products containing hormones and soy.
Ms U is concerned that early on in the process, and perhaps even at diagnosis, people are not told about the many resources available to them, such as support groups, cancer care tools, and system navigation help. Since her diagnosis, she has become an advocate for breast cancer awareness and early detection. She tells those with a recent cancer diagnosis, “Find someone to help you navigate the system, ask a lot of questions and do a lot of research on your own. People do more research on buying a refrigerator than they do with researching their own medical care.”
In July 1999, Mr B completed an annual executive physical examination, one of the benefits he received when employed as a city manager. He had no regular primary care provider, relying on the doctor performing the physical for advice. Because his prostate specific antigen (PSA) level had increased dramatically from the previous year, he was urged to see a urologist. After completing a biopsy and scans, the urologist advised Mr B that he had prostate cancer as well as an enlarged lymph node, which was confirmed as cancerous after a subsequent needle biopsy. Mr B sought a second opinion from a urologist at a nearby university, who confirmed the diagnosis and suggested androgen deprivation therapy (ADT).
Immediately after his diagnosis, he began double ADT. His PSA dropped to an almost undetectable level after two or three rounds of therapy, but Mr B continued the therapy for 5 years. In the first year of ADT, Mr B investigated radiation therapy in addition to ADT. He interviewed two radiation oncologists as well as a medical oncologist. Another factor that helped Mr B make the decision to receive 3-dimensional conformal external beam radiation therapy was that his urologist discussed his case with other urologists at a medical conference. The response from fellow participants helped this clinician become more enthusiastic about radiation therapy for Mr B's cancer. Mr B completed a full radiation cycle in 2000.
Although tolerable, Mr B has experienced the common side effects from ADT. His PSA is now undetectable. He visits the radiation oncologist and urologist once a year and is watching his numbers annually as well (testosterone, complete blood count, and lipids). Additionally, he gets his PSA checked regularly, initially quarterly after ceasing ADT, now every 6 months.
Mr B feels that his doctors communicated well, and their roles were clearly defined. He had good health insurance and good doctors who listened to his concerns. During his treatment, he did not have a primary care provider as part of his team of care providers. Because of the good communication with his specialists and his decision to become “the general of his own army,” he felt that it was not necessary to involve a primary care provider. He does have one now, however, and sees him every couple of years.
The one area Mr B found lacking was that his laboratory and scan test results were not communicated well to all parties. Therefore, very early on, he began to collect his own medical records. He emphasizes that patients have a right to their medical records, even though they may need to be aggressive to obtain them. He also recommends that patients seek a support group as he did, do their homework about the disease, and investigate and select the doctors who may be involved in their care.
Mr W spent a career as an active duty military member and received his medical care through the military. In 1991, after his retirement, Mr W's wife urged him to see her primary care provider for a physical examination. During the examination Mr W had a PSA test. The results indicated an elevated level (11) so Mr W was referred to a urologist. The primary care provider's first choice was not available so Mr W was referred to a second urologist, who turned out to be exceptional. A six-quadrant needle biopsy was performed with the use of an ultrasound, and the result of his biopsy indicated a prostate cancer with Gleason score of 7 (4 + 3).
Mr W's urologist recommended that he review his options with specialists in radiation therapy, oncology, and surgery. Despite a 5-hour drive from Chicago, the urologist arranged an appointment at the Mayo Clinic in Rochester, MN. Mr W was very impressed with the highly organized care system at Mayo. He was in and out of admissions in 15 minutes. The appointments process was equally impressive. Mr W saw a nurse practitioner, a fellow and physician's assistant, and had blood drawn. Everyone he saw entered information into a laptop. At the end of the day, he saw a surgeon, who reviewed his case. All the information from the earlier tests was available to the surgeon through the laptop. Additionally, reports of all tests and procedures conducted at Mayo were sent to his primary care provider and urologist.
The surgeon recommended treating the prostate cancer with surgery, and Mr W's urologist agreed. After the prostatectomy, the laboratory report revealed that Mr W had a positive margin and he was put on hormonal therapy as recommended for 6 months. Since then, he has been cancer free. He gets annual checkups from a urologist. He also has high cholesterol so he sees his primary care provider often for that condition. He takes cholesterol-lowering medication, so blood work for kidney function is done every 6 months and the PSA is added to the blood work.
Reflecting on his experience, Mr W said that he was fortunate to have excellent, and mobile, insurance coverage, an engaged primary care provider who was proactive about PSA testing at a time (1991) when it was not done regularly, an excellent urologist, and access to a medical facility that practiced “gold standard” high-quality care. As a cancer advocate, Mr W, said that he constantly tries to get men screened for prostate cancer so they can establish a PSA baseline number. He tells them, “You really need to know what your number is.” “Forget about finding out about cancer. You need to know the baseline number to monitor your prostate health.”
Ms F grew up in a small town under the care of a primary care provider she knew most of her life. After high school, she went off to college and upon graduation got a job in Washington, DC, as a television producer. At her first job, she was not offered health insurance but needed a job so she took the position. Eventually, she changed jobs, got insurance, and decided she should see a doctor. She saw the doctor on April 12, 2001 and received a complete physical examination, including a Papanicolaou test. She left the appointment feeling fine and with no indication from the new doctor that anything was amiss. About 2 weeks later, the doctor's office called for a follow-up appointment. This struck Ms F as odd.
At the second visit, the doctor suggested that Ms F needed to see a gynecologist. She was very surprised by this suggestion. She also told Ms F that she had cervical carcinoma in situ and needed to have a cone biopsy performed by an oncologist. Ms F made an appointment with a gynecologist. The gynecologist and primary care provider jointly decided that she should go to a nearby university hospital and recommended a specific oncologist for her to see. Ms F was told that she had to wait a month for an appointment with the oncologist because his schedule was booked.
While waiting for the appointment with the specialist, Ms F began to have doubts about the accuracy of the Papanicolaou test and convinced herself that she did not have cancer. Her primary care provider called the hospital frequently and managed to get her a more timely appointment. She had an examination at the hospital and was told by the specialist that she needed a hysterectomy because she had cervical cancer. The hospital called Ms F repeatedly to schedule the hysterectomy but she did not respond because she felt “those people were crazy” and she convinced herself she did not have cancer. She also did not want to have a hysterectomy because she was not married and wanted to have children some day.
During this period, Ms F saw nine doctors to seek additional opinions on whether she needed surgery. To her surprise, they all agreed that she needed a hysterectomy. On June 14, 2001, she had a radical hysterectomy. Following the surgery, she had radiation and chemotherapy until October 2001.
Ms F identified her hometown primary care provider as the first “quarterback” of her care. She also is grateful to the primary care provider and gynecologist she saw in Washington because they were such strong advocates for her care. Since her surgery, the “quarterback” responsibility has shifted to her oncologist. She spends more time with him than any other provider. An important ongoing concern is whether she will be able someday to have a baby by a surrogate. She talks with her oncologist about this issue and wishes that her doctors had talked with her more about options for maintaining ova and fertility before her surgery.
Ms F is now adamant about having adequate health insurance, obtaining all of her medical records, and knowing as much as possible about her ongoing health. She works with other patients as a patient navigator. She tells patients that “you are your best advocate.” She says, “At every appointment, make your doctor guilty, make them know that you have a life, you have a family, make sure he remembers you when he goes home, make sure that he knows your name.”
Dr P is a 43-year-old oncologist. When he was 13 years old, he noticed a bump on his foot, but he ignored it because it was not painful. When his mother noticed the bump, she took him to the pediatrician. The pediatrician suggested that he see an orthopedic surgeon but provided no specific referral. Dr P's mother chose to take him to an orthopedic surgeon at a community hospital, who had treated her earlier for a fracture. Not suspecting anything out of the ordinary the orthopedic surgeon removed the lump. Laboratory tests showed that the lump was synovial sarcoma. The margins also tested close but negative.
Following this result, the orthopedic surgeon referred Dr P to a cancer center for a resection. The orthopedist knew an oncologist there and recommended him highly, even though the oncologist did not specialize in pediatric patients. Consequently, Dr P was treated on the adult services ward. The doctors at the cancer center recommended amputation of his foot along with chemotherapy. Dr P refused to accept this recommendation. The family obtained a second opinion from an oncologist at another hospital, who said that keeping the foot and undergoing radiation was a viable option along with chemotherapy. Both doctors favored radiation. The family had divided opinions on the issue of amputation, which allowed Dr P considerable leeway to influence the final decision.
Meanwhile, the oncologist at the cancer center was willing to administer the therapy suggested by the other oncologist. The therapy included radiation and chemotherapy. The family chose this route, and Dr P had radiation therapy for 4 weeks and the chemotherapy for 9 months. Unfortunately, over the next 3 years, he had repeated wounds and infections that would not heal. At the age of 16 years, his leg was amputated below the knee.
For 5 years following the amputation, Dr P continued to see his team of three doctors at the cancer center, the radiation oncologist, the chemotherapist, and the surgical oncologist. He has been fortunate not to have any significant long-term effects from the radiation or chemotherapy. Reflecting back, Dr P notes that all his specialists communicated well but that his primary care doctor did not have an ongoing role in his cancer care. It seemed to him that his surgical oncologist was his main care coordinator. In addition, Dr P notes that although the doctors at the cancer center were very good, they did not at any point address to any great extent emotional issues that he might have experienced as an adolescent coping with cancer and an amputation.
Overall, Dr P has a positive opinion of his experience in the health-care system. However, he acknowledges that he was fortunate that his parents had good health insurance coverage and that he has been employed at hospital continuously from the time he graduated from medical school, so he has always had health insurance coverage. He has gone to an internist every couple of years for follow-up care but has never been to the same doctor twice. He reports that he has not found a provider who understands both sides of his needs. The internists do not understand his cancer, and the oncologists do not understand his noncancer health maintenance needs, such as monitoring cholesterol and blood pressure. He also has seen doctors at the cancer center who specialize in late effects of cancer, but he does not feel that they have been able to respond particularly well to his particular needs either.
For Dr P, the lack of guidelines and providers who understand the very long-term needs of cancer survivors is an unmet need. With a growing number of childhood cancer survivors, more needs to be done to address this issue. Another challenge he faces is getting life insurance outside the hospital setting because insurers assume he is a high risk. Similarly, he feels that the longitudinal study of childhood cancer survivors in which he participates assumes that most cancer survivors are not doing well. He feels that he is generally healthy and doing well in his life but wonders how his long-ago cancer affects his overall preventive care now (eg, screening for other cancers, treatment of risk factors for chronic disease). This uncertainty and a lack of places to turn to for answers are Dr P's major current concerns.