Living with hematologic cancer: Recommendations, solutions

INFORMATION TECHNOLOGY SOLUTIONS

Implementation of a survivorship care plan can be facilitated by integrating the plan and treatment summaries into the patient’s electronic medical record and encouraging the patient to be a part of the process.²⁰ Many electronic medical record systems such as Epic can automatically fill in treatment summaries and provide patients access to a survivorship care plan tailored to their needs, but these features are not routinely used, and output can be lengthy and hard to follow.^21,22

There has been a surge in research in information technology and care plan delivery since the Health Information Technology for Economic and Clinical Health (HITECH) Act was passed in 2009,²³ specifically in innovative strategies to proactively screen for, assess, and manage disease- and treatment-related symptoms in cancer survivors. As a result, patients and families can be more engaged in their care, and providers can better guide survivorship concerns.

Providers can create their own survivorship care plans or use electronic resources to generate one. The American Society of Clinical Oncology and the National Comprehensive Cancer Network provide printed templates in which the patient, primary care provider, or oncology team can complete a care plan. Newer electronic platforms such as the Carevive system are also available. Brief electronic outcome questionnaires can be completed by the patient at home or in the waiting room to assess symptoms, evaluate health maintenance practices, and generate a plan of care to review with the patient.

EMERGING TECHNOLOGY: TELEMEDICINE, VIRTUAL VISITS

Technology can help patients and the healthcare team in survivorship monitoring. Telemedicine, the exchange of medical information via electronic communication, includes video conferencing for patient consultations, transmission of still images, patient portals, and remote monitoring of vital signs.²⁴

This technology is critical to deliver high-quality acute and chronic care to patients in remote or rural areas, locally to patients unable to travel to the clinic, and internationally.^25–28 As patients become more technologically savvy, providers can try novel strategies to provide patients access to care. As of September 2015, there were at least 165,000 health applications (apps) for smartphones to help patients better manage aspects of their care such as diet, exercise, blood pressure, and blood sugar levels.²⁹

Video technology such as Express Care Online allows patients to connect with their healthcare providers for video and virtual visits without having to leave home or take time off from work. It also allows oncology providers to have virtual face-to-face contact with patients undergoing treatment phases, and primary care providers to have easier contact with patients during maintenance and remission phases. This technology allows for earlier detection of illness and provides broader access to care. Virtual visits may even prevent needless hospitalization in some cases or, conversely, alert the physician to tell the patient with alarming symptoms of an acute event, that it is time to go to the hospital.

SURVEILLANCE FOR LATE TREATMENT EFFECTS

Guidelines for surveillance for late treatment effects include the following:

• Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer³⁰
• National Comprehensive Cancer Network Guidelines for Age-Related Recommendations: Adolescent and Young Adult Oncology³¹
• National Comprehensive Cancer Network Guidelines for Treatment of Cancer by Site and Survivorship³¹
• American Society for Blood and Marrow Transplantation, for survivors of hematopoietic cell transplantation.³²

Survivors of childhood blood cancers are at increased risk of cardiac effects of high-dose or anthracycline chemotherapy (eg, doxorubicin for lymphoma, idarubicin for leukemia), skin cancer, sex-specific cancers (breast cancer, cervical cancer, prostate cancer), and osteoporosis.^5,30,33,34

For adult survivors of childhood cancers, it is generally recommended to screen for secondary conditions according to the US Preventive Services Task Force. The clinician must also consider the age at cancer diagnosis (child, young adult, or adult), the length of time since chemotherapy (months vs years), and the type of chemotherapy received.

A myriad of recommendations exist according to cancer type, location, stage, and age at diagnosis, but no clear consensus for screening exists. The major survivorship surveillance guidelines of the Children’s Oncology Group, National Comprehensive Cancer Network, and American Society for Blood and Marrow Transplantation are very detailed and lengthy and therefore not user-friendly for the busy clinician. While these guidelines contain minor differences as to what to test for and when to test, they differ mainly in considerations of the length of exposure to chemotherapy and radiation (eg, children, young adults, and older adults), length of time from completion of treatment to assessment of late complications, and whether the patient underwent hematopoietic stem cell transplant.^35,36

Table 1 reviews hematologic malignancies and conditions that blood cancer survivors are at risk for and general routine screening recommendations.^{5,22,30,33,34,36–39} In general, an assessment by a healthcare provider is recommended annually to screen for late effects of cancer and its treatment. Most important are screening for cardiac toxicity, giving immunizations, and preventing second cancers.

Table 1 reflects general recommendations for healthcare screening in childhood, adolescent, or young adult cancer survivors who see adult primary care physicians and for adult cancer survivors (acute leukemias, lymphomas, and multiple myeloma).

Table 2 focuses on screening and prevention specifically after hematopoietic cell transplantation.^30,32 These tables are not meant to be all-inclusive but to provide evidence-based recommendations for health surveillance at a glance.

SURVIVORS NEED ONGOING CARE

Recent successes in the treatment of hematologic cancers have led to dramatic changes in the overall health of these patients. In many instances, cancer survivors in the United States are considered to have a chronic illness with survival rates surpassing those in the past. A longer life span is counterbalanced by cumulative physical, financial, and psychosocial issues that require a multidisciplinary team to monitor and manage.

Childhood cancer survivors face the same psychosocial and financial issues as survivors of adult-onset cancers and are at heightened risk of preventable conditions. Ultimately, it is up to the survivor to self-manage many long-term treatment-related symptoms.

A survivorship care plan and treatment summary to guide the patient, primary provider, and oncology team is an essential component of quality care. Screening guidelines vary according to the age at treatment and length of time from therapy, but general screening and the use of technology and information technology solutions to deliver care can help survivors. These solutions have the potential to transform healthcare delivery in the future and provide the opportunity for ongoing, comprehensive care.