With survivorship care plans recommended by the Institute of Medicine (IOM) and a new requirement for accreditation by the Commission on Cancer--we need to be advocates of these plans. This starts with opening that door a little wider and exploring how cancer survivorship plans provide a customized road map for survivors and achieve a win-win situation in health care for both providers and patients.
Evidence that it works
In my experience coaching survivors, and people in general, I see time and time again how having a plan relieves stress, keeps people focused, produces results, and helps identify missing resources necessary for achieving goals. This is my observation of successful coaching. But I know most people will want empirical proof of the benefits of survivorship care plans.
The truth is we have little to work with. A 2015 review of databases only identified 42 records of existing empirical studies on survivorship care plans published between 2006 and 2013. Only 14 studies focused on survivor and provider outcomes from care plans. Overall, the review noted a relationship between care plans and improved knowledge, but dually noted that use of care plans remains sporadic.
Studies can be valuable sources of information, but they can also have limitations. Given that most care plans are not user friendly for the survivor and have little to no psychosocial emphasis and no tools, how can it possibly be fair to conclude that care plans are not effective?
Even though the quantity and quality of survivorship care plan research is limited, when we dig a little deeper, a more complete picture is revealed.
A 2013 study revealed positive results from The LIVESTRONG Care Plan, a free online public tool.
In total, 298 patients with a range of diagnoses (breast, hematologic, and gastrointestinal cancers) used the care plan tool and completed a follow-up survey at one month. Most care plan users (93%) rated the plan information as “excellent, very good or good.” Sixty percent said it provided new information they hadn’t received from their practitioners and prompted them to be more active in their health care. Seventy-two percent identified the emotional impact of the care plans, feeling “more informed” as survivors about such things as possible long-term effects of their cancer and important follow-up care tests. Overall, they noted care plans improved their communication with their providers. Some even felt empowered and made lifestyle changes (e.g., diet and exercise) because of the plans.
Information is power and a second 2015 study showed that tailored care plans—complete with information on diagnostic tests, effects on social and sexual life, and psychosocial support—puts survivors more in control. Women with endometrial cancer who participated in survivorship care plans reported more cancer-related contact with their physician and an increase in the amount of patient-tailored information for areas that were previously lacking.
The BC Cancer Agency’s study, Survivorship care plans: a work in progress, concluded that a “holistic approach to care that goes beyond the IOM recommendations and that incorporates care planning from the point of diagnosis to beyond completion of treatment might improve people’s experience of cancer care.”
This is all good news. Survivorship care plans that are designed to engage survivors and address all of their needs--not just the medical--can be useful vehicles to improve patient-provider communication and improve postcancer lifestyle. If we can make survivors feel empowered, we should.