Improving Care Coordination to Optimize Health Outcomes in Cancer Survivors

Need for Coordination

Most individuals with a history of cancer will, at some point, follow-up in a primary care setting, but coordination between primary care providers (PCPs) and oncology providers remains fragmented and fraught with challenges. According to Linda Overholser, MD, MPH, Associate Professor, Division of General Internal Medicine, University of Colorado and University of Colorado Cancer Center, and Carlin Callaway, DNP, RN, ACNP-BC, Senior Instructor of Medicine, Division of Medical Oncology, University of Colorado School of Medicine, who discussed the importance of care coordination to optimize health outcomes in cancer survivors at the NCCN 2019 Annual Conference, achieving coordinated, patient-centered care will require effective and efficient communication between care teams.

“Communication between PCPs and oncology providers should start early in the cancer trajectory and continue into survivorship,” said Dr. Overholser. “PCPs are willing to care for patients throughout the cancer continuum, but they really need evidence-based recommendations and a plan outlining who is going to manage what.”

What is Survivorship Care?

According to the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Survivorship, an individual is considered a cancer survivor from the time of diagnosis, during and immediately after treatment, and through the balance of their life. The guidelines focus on the vast and persistent impact the diagnosis and treatment of cancer have on adult survivors throughout the continuum of care, including potential impacts on health, physical and mental states, health behaviors, professional and personal identity, sexuality, and financial standing.

There are 6 standards for survivorship care outlined in the NCCN Guidelines, and these have remained constant: prevention of new and recurrent cancers, surveillance for cancer spread or recurrence, assessment of psychosocial and physical late effects, interventions for the consequences of cancer and its treatment, coordination of care between PCPs and specialists, and survivorship care planning.

NCCN recommendations for general principles of healthy lifestyles, part 1.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

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NCCN recommendations for general principles of healthy lifestyles, part 1.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

NCCN recommendations for general principles of healthy lifestyles, part 1.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

Challenges to Care Coordination

One of the most important facets of good survivorship care is coordination between specialists and the primary care team, particularly when it comes to determining the timing and performance of key responsibilities. “It's assigning responsibility and making sure that responsibility is actually carried out,” said Dr. Callaway.

However, there are numerous challenges to care coordination. Patients’ medical histories are becoming increasingly more complicated (eg, increased rates of metabolic syndrome among survivors),¹ and patients have a variety of unmet needs after treatment. Many patients have also suffered physical side effects and have seen the relationships in their lives undergo dramatic shifts. Patients’ needs often relate to quality of life (fatigue, fear of recurrence) and/or their ability to return to work (fatigue, neuropathy).² Addressing these needs is not a one-person job.

Adding to the challenges facing coordinated care are recommendations that do not always align. For example, the NCCN Guidelines for Breast Cancer (version 1.2019) recommend that women taking tamoxifen for invasive breast cancer should have an annual gynecologic assessment every 12 months. However, recommendations from the American College of Obstetricians and Gynecologists (ACOG) do not align with those from NCCN for this patient population, recommending that premenopausal women treated with tamoxifen have no increased risk of uterine cancer and do not require additional monitoring beyond routine care, whereas postmenopausal women should be closely monitored for symptoms of endometrial hyperplasia or cancer.³ “If we, as major bodies that put forth guidelines, aren't always in concert, imagine what our patients encounter when they call their gynecologist's office to schedule these appointments,” she said.

Yet another challenge lies in the fact that patients do not always follow recommendations. For example, despite recommendations outlined in the NCCN Guidelines for Survivorship, 50% of patients do not wear sunscreen, 50% do not exercise as recommended, and 27% do not see PCPs regularly.⁴ Additionally, patients do not always continue with follow-up visits with their cancer team. In a study of 30,000 patients with early-stage breast cancer, 21% discontinued follow-up, and among those, older women and women with hormone-negative disease were more likely to discontinue.⁵

Importance of a Survivorship Care Plan

Studies have shown that patients who have completed cancer treatment want their primary care team to participate in their care, but often wonder about their primary care team’s ability to provide cancer-specific care.⁶ “It's our responsibility as oncology professionals to talk to patients,” said Dr. Callaway. “I tell my patients that it is our goal to help them live as long as possible, as well as possible, and that their primary care team is essential to that.”

Survivorship care plans (SCPs) can help to facilitate care coordination between oncology and primary care. According to Dr. Callaway, an SCP benefits the patient by outlining key concepts in a clear and easy-to-understand document, and by serving as a catalyst for key conversations. The oncology team benefits from the availability of content based on NCCN Guidelines and that are individualized and reflective of current practice, which also helps to facilitate effective communication with outside oncology teams across the country. The primary care team (and additional providers) benefit from evidence-based, pertinent information and the SCP serves as a useful tool to help with care coordination (ie, guidelines are specified and contact information is provided).

Although there is limited evidence regarding the impact of SCPs on quality of life and health outcomes,⁷ it has been shown that when provided by advanced practice nurses, SCPs improve satisfaction, quality of life, and cost efficiency.⁸ SCPs also reduce distress and serve as a vehicle for communicating long-term effects and detailing plans for follow-up. “They don't have to be elaborate. They need to be clear, and they need to convey important points,” said Dr. Callaway.

She added that all oncology professionals need to contribute to coordinated care by talking to patients (eg, “We want to share a copy of your SCP with primary care. Here’s an additional copy for you to share”), communicating with colleagues (through the EMR/email/phone), and through education (of patients/primary care and oncology teams/students).

Why the Lack of Communication?

Shared care for cancer survivorship has been and still is problematic. A 2011 qualitative study of oncologists and PCPs revealed discordant expectations and preferences,⁹ and a 2017 systematic review confirmed that communication between PCPs and oncologists remains an issue.¹⁰ Still, evidence continues to support the fact that patients receive the most comprehensive care when followed by both primary and oncology teams. “I can tell you from personal experience that PCPs do get asked on occasion about treatment decisions, symptoms, and ways of staying healthy during and after a cancer diagnosis,” said Dr. Overholser. “A lot of us don't necessarily feel that we should be the person to answer questions about treatment decisions, but we do get asked.”

A growing evidence base around survivorship care is helping to develop clinical guidance to inform these conversations (ie, NCCN, ASCO, American College of Sports Medicine), but according to Dr. Overholser, the challenge lies in implementing these guidelines in a way that supports coordinated and personalized care. “I think we tend to simplify the relationship between primary care and oncology, as if there's only primary care and oncology,” she said. “But coordination, even from the beginning, often involves other specialists (endocrinology, urology, dermatology, psychology, etc.).”

According to a qualitative study of 12 advanced primary care practices,¹¹ a lack of “discrete, actionable” guidance was cited as a barrier to the provision of cancer survivorship care. Additionally, survivors were not recognized as a unique population or category, and clinicians were unable to easily identify patients with a history of cancer in the EMR. Other barriers to the transition to primary care include a lack of formal training/education in cancer survivorship among PCPs, a lack of confidence in the ability of PCPs to care for cancer survivors, resource differentials (eg, patients in rural areas are more dependent on primary care but cancer-specific resources may be lacking), and patient expectations/preferences (patients often feel more comfortable following up with their oncologist). Additionally, the primary care burden is relatively small in terms of survivor caseload.

“I can tell you that, in primary care, it’s surprisingly difficult to identify somebody as a cancer survivor,” she noted.

The New Norm: Multimorbidity

In general, there is a multimorbidity focus in primary care versus a single disease focus in oncology, Dr. Overholser pointed out. Multimorbidity is becoming the norm, and in cancer survivors, nononcologic conditions may now compete with cancer as causes of morbidity and mortality,¹² further reiterating the need for coordination. Approximately 23% of the general population has >1 chronic condition (65% for individuals aged >65 years),¹³ and multimorbidity occurs in an estimated 40% of patients with cancer, with the most prevalent conditions among survivors being diabetes, chronic obstructive pulmonary disease, heart failure, and cerebrovascular disease.¹⁴

A recent qualitative systematic review suggested that multimorbidity only compounds issues already highlighted in cancer survivorship research, because these patients need to manage multiple conditions and multiple medications.¹⁵ Health promotion recommendations may be especially relevant for these individuals. Furthermore, comorbid conditions can impact treatment options and decisions, and can potentially render patients ineligible for clinical trials.

The NCCN Guidelines for Survivorship outline healthy lifestyle principles that should be followed by survivors. Promoting adherence to these guidelines can also serve to standardize care delivery between teams of providers (Figures 1 and 2). “These are messages that should be communicated in primary care,” said Dr. Overholser. “But it would be helpful for all of us to work as a team and get this message out early in cancer treatment and survivorship and to have consistent messaging from providers.”

NCCN recommendations for general principles of healthy lifestyles, part 2.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

View Full Size

NCCN recommendations for general principles of healthy lifestyles, part 2.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

NCCN recommendations for general principles of healthy lifestyles, part 2.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 5.5; 10.6004/jnccn.2019.5009

“We all work in a busy, chaotic healthcare system,” Dr. Callaway added. “So, whether it’s taking a moment to label your notes clearly, to email someone, or to pick up the phone, we all bear some responsibility. We can’t put our head in the sand and think that somebody else will take care of it.”