A diagnosis of cancer often opens a Pandora's box of concerns and worries for patients and caregivers. In addition to life's daily responsibilities, patients now have to think about “Who will take the kids to soccer while I'm at chemo?” or “How will I pay for treatment?”
A recent survey of cancer patients and caregivers conducted by Savor Health indicates that nutrition is also a significant concern. In this survey, 85 percent of respondents reported that they thought about nutrition and what to eat from diagnosis, throughout and after treatment. On a scale of 1 to 5, 65 percent reported that managing nutrition as part of their overall treatment regimen is extremely important (5) or very important (4).
Despite this hunger for nutrition information and resources, 70 percent of patients reported their nutritional needs were never met before, during, or after treatment, indicating a significant unmet need and one, based on the evidence-based literature, with clinical and quality of life implications (Nutrition for the Person with Cancer During Treatment: A Guide for Patients and Families, American Cancer Society). A 2011 study by Choi also identified this need. In it, 66.4 percent of patients reported their nutritional needs were not being met (Support in Cancer Care 2011;19:1495-1504).
Patients report they receive no information from their medical team or, when they do receive information, they feel it is too little information (NZ Medical Journal 2012;125(1356):27-37). This is due, in part, to a lack in nutrition education for residents in medical school (Health Promot Pract 2016; doi:10.1177/1524839916658025). As a result, without that important evidence-based science and knowledge that underlies the responsible practice of medicine, they are uneasy to freely offer nutrition advice. Non-MD medical professionals also report they are not well-equipped to meet the nutritional needs of cancer patients. In a 2017 Savor Health survey of nursing professionals, only 20 percent reported they feel well-equipped to answer patients' nutrition questions. In the absence of guidance from the medical community, 90 percent of patients and caregivers search on their own for nutrition information, often leading patients to forgo conventional treatment and/or pursue new or additional “treatments” that can result in poor clinical results, interference with medical treatment, and even death.
So why does addressing patients' unmet nutritional needs matter? Because of the prevalence of nutritional issues and the research that shows addressing them will positively impact clinical and quality of life outcomes. Nutritional issues are common among all cancer patients, often affecting patients attending oncology outpatient clinics, and result from both the cancer itself as well as its treatment (Oncol Nurs Forum 2012;39(4):E340-345). Poor nutrition is indicated in 50-80 percent of all cancer cases and over 80 percent of advanced stage cancers (Wien Med Wochenschr 2004;154(9-10):192-198, Nutrition Journal 2012;11(27):1-18).
When nutritional issues are addressed and patients receive nutritional intervention, the research demonstrates patients experience less weight loss and have improved nutritional status, global quality of life, and physical function (Am J Clin Nutr 2012;96:1346-1353). Nutritional intervention has also been shown to help patients maintain or increase weight, stabilize or reverse weight loss, preserve preoperative weight and reduce severe postoperative complications, and to halt weight loss and improve appetite (Dis Esophagus 2013;26(6):587-593, Hepatogastroenterology 2013;60(123):475-480). In short, addressing patient's nutritional issues does matter.
This concept is not new. In 1998, researchers reported that “early recognition and detection of risk for malnutrition through nutrition screening followed by comprehensive nutritional assessments is increasingly recognized as imperative in developing standards of quality care in oncology practices (Europe PMC 1998;25(2 Suppl 6), 20-27).” Yet, nearly 20 years, later nutritional screening and intervention is inadequate. Despite evidence of its benefit, the majority of cancer patients receive little nutritional advice or intervention. It is imperative our health care system finds a way to improve access to oncology nutrition services.
Lack of Industry Standards. One significant impediment to addressing the nutritional needs of cancer patients is that there are no industry-wide standards or protocols for oncology nutritional screening and intervention like, for example, the NCCN guidelines for treatment. Each facility addresses patient nutritional issues in its own way reacting to the “sickest of the sick,” after issues have already developed instead of proactively preventing them in the first place.
Shortage of Oncology-Credentialed Registered Dietitians. A shortage of oncology-experienced registered dietitians exists that results in health care facilities either: a) having inexperienced professionals address nutritional issues, or b) having an oncology registered dietitian covering multiple oncology facilities, rationing who they can assist.
Lack of Reimbursement. Except in cases where another reimbursed co-morbid condition exists, nutritional counseling, and other interventions are generally not reimbursed despite the very clear need and benefit that exist.
Dietitians are Not Part of Integrated Care Delivery Teams. When registered dietitians are in place, they are generally not integrated into care delivery teams. As a result, they either: a) don't know the patients who are at risk of developing nutritional issues and therefore can't proactively address and prevent them from developing, or b) have an incomplete picture of the patients with nutritional issues and time is lost in getting a full picture of the patient and then developing a care plan.
It is imperative that our health care system develops a solution to address these important needs. It should include:
- A Clinical Protocol. A comprehensive and proactive nutrition protocol to be developed and implemented at all inpatient and outpatient cancer centers, for all acuity levels and all care settings.
- Appropriate Staffing. A solution should include adequate staffing of oncology trained registered dietitians, preferably those with the Certified Specialist in Oncology (CSO) credential who have more than 2,000 clinical hours in clinical oncology nutrition and have passed a national certification exam that is retaken every 5 years.
- Reimbursement. Nutritional services must be reimbursed by both government and commercial payors. Similar to patients with diabetes and chronic kidney disease, so too, should cancer nutritional services have a reimbursement code.
The clinical protocol should include four core areas for both inpatient and outpatient settings: screening, assessment, intervention, and education. Screening, assessment, intervention, and education should be conducted at diagnosis, pre-treatment, treatment, and survivorship because patient's nutritional issues often change over time and require different interventions and resources along the way.
At diagnosis, patients should be screened for nutritional issues or the potential of developing them. If no issues exist, they should be given educational resources to help understand what issues could develop, who to notify when they develop, and strategies to manage them (for example, good oral care when experiencing mucositis). If moderate issues exist, then an assessment of their severity should be undertaken by a CSO to determine what kind of intervention should occur, including educational. If severe issues exist then the medical team should conduct an intervention, including possible hospitalization.
Research shows better nutrition means better outcomes. The oncology nutrition community has come together to identify and address the unmet nutritional needs of cancer patients and looks forward to working with the medical community to develop and adopt effective clinical protocols.
SUSAN BRATTON, BA, MBA, is Founder and Chief Executive Officer of Savor Health.