Patient-Reported Outcomes and Assessment of Quality of Life: A Focus on Multiple Myeloma

Abstract

Patients with multiple myeloma are living longer, yet the chronicity of newer treatment modalities has led to increased symptom burden and a notable effect on quality of life (QOL). The assessment of QOL and evaluation of patient-reported outcomes is an essential element to the care of this population. Patients with MM may experience unwanted side effects or disease-related symptoms that create a burden in everyday living. Subjective patient-reported information has become an important dimension to the overall care and treatment of these patients. Symptoms that negatively affect health-related quality of life (HRQoL) and their impact on future treatments should be assessed using patient-reported tools. Many patients’ treatment decisions are guided by their perception of their HRQoL. It is important for advanced practitioners to explore which factors are most impactful to the patient. Improved understanding of this can further enhance the management of symptoms and adjustments in treatment to avoid further reduction in HRQoL.

Many new treatment regimens have become available for patients with malignancies, particularly for patients with multiple myeloma (MM). As a result, MM has been increasingly described as a chronic illness. Newer modalities of treatment mean that patients must learn how to live with treatments while performing activities of daily living. Patients must deal with ongoing or cumulative side effects of treatment, which may impact their QOL. Patients will often make treatment decisions guided by their perception of their health-related quality of life (HRQoL), or the impact that their health has on their overall quality of life. Multiple myeloma is a common hematologic malignancy. Both overall and disease-free survival in patients with MM have been significantly prolonged due to newer and more targeted treatments, and adequate supportive care (Gerecke et Jal., 2016). Toxicities associated with different treatments have an impact on HRQoL. Neurologic, hematopoietic, and cardiac side effects are the most common toxicities in patients undergoing prolonged treatment. Because these patients have an extended overall survival, they will frequently discuss HRQoL issues with their providers during follow-up and routine care (Gerecke et al., 2016).

DISEASE-SPECIFIC SIDE EFFECTS

Patients with MM may suffer an array of side effects, all potentially impacting HRQoL. Some side effects can include anemia, fatigue, mouth sores, peripheral neuropathy, bone pain, increased risk of infection, fractures, diarrhea, steroid-associated side effects, and deep vein thrombosis. Advanced practitioners must have the ability to assess and manage these potential side effects as patients continue undergoing treatments. Recognizing and treating complications, as well as following regimen protocols and administering preventative medication, are major roles of advanced practitioners.

Gadó & Domján (2013) describe MM as a chronic, incurable disease that may be associated with a reduction in QOL. Pathologic bone fracture, bone pain, fatigue due to anemia and malignant disease itself, and neurologic symptoms that may be associated with hypercalcemia may impact the HRQoL of patients with MM. Many of the therapies for MM are administered via IV injections or infusions and are given frequently, even weekly. Routine laboratory check-ups, repeated blood sample collections that may require painful needlesticks, and bone marrow aspiration and biopsy are frequently required for diagnosis and monitoring of the disease response and recurrence (Gadó & Domján, 2013). All of these procedures have an impact on a patient’s HRQoL. Potential treatment with stem cell transplantation poses considerable effects as well, as does highdose chemotherapy. In addition, infection, mucositis, increased use of blood products, and extended or recurrent hospital admissions affect HRQoL (Gadó & Domján, 2013).

Additional side effects may include skeletal disease, myelosuppression, and venous thromboembolic events. To reduce the incidence of skeletal events, bone pain, and hypercalcemia, administering a bone-modifying agent such as pamidronate, zoledronate, clodronate, or denosumab is recommended in combination with systemic treatment (Anderson et al., 2018; Noonan et al., 2017). Infections are the principal cause of mortality among patients with MM. Patients who present with prolonged neutropenia or recurring bacterial infections can be prescribed granulocyte colonystimulating factors (G-CSF) and/or intravenous immunoglobulins (Brigle et al., 2017). Patients with MM are also at an increased risk of venous thromboembolism. The risk is comparative to patient-specific factors, including immobility, hyperviscosity, and history of previous venous thrombosis. These risks can increase with the use of immunomodulatory drugs, carfilzomib, or highdose steroids (Noonan, Rome, Faiman, & Verina, 2017). Prophylactic administration of aspirin or low-molecular heparin depending on the number of risk factors is essential with concurrent treatment (Gerecke et al., 2016). Supporting patients through side effects to reduce further decline in their HRQoL is important. Encouraging adequate sleep, proper nutrition, increased fluid intake, and moderate activity is essential to maintaining a healthy lifestyle. Medications such as pain medication, antiemetics, or sleep aids, if appropriate, should be utilized.