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Survivorship Care Provision for Patients With Hematologic Malignancies

The Quest for Quality Evidence

Chan, Raymond Javan PhD, MAppSc (Research), BN, RN, FACN; Chan, Alexandre PharmD, MPH, FCCP, BCPS, BCOP

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doi: 10.1097/NCC.0000000000000288
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Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections.1 Some patients receive allogeneic stem cell transplantation that often requires inpatient stay of several weeks and lifelong medical follow-up. In recent years, advances in treatment regimens and an aging population saw an increasing number of patients living with hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (eg, rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma, and imatinib in chronic myelogenous leukemia) has also resulted in improved overall survival.3

Despite these advances, survival of a hematologic malignancy does not guarantee a full restoration of health, with many survivors continuing to experience debilitating complications and impaired quality of life (QoL) as a result of their disease and aggressive treatment.4 The National Cancer Institute has drawn attention to survivorship, defined as the health and life of a person following cancer treatment until the end of life,5 encompassing the importance of attention to the physical, psychosocial, and economic impact of cancer, beyond diagnosis and treatment.5 Since cancer survivorship care gained attention in the 1990s, there has been an international uptake of survivorship care provision.6,7 However, research examining the effects of structured survivorship care to date has focused predominantly on those with breast cancer,8 with relative neglect of the needs of patients with hematologic malignancies, particularly in the posttreatment phase.9 We argue that the survivorship trajectories of patients with hematologic malignancies can be very different to those with solid tumors, requiring separate investigations. The lack of survivorship research in this population might be due to the challenges associated with undertaking clinical trials in this heterogeneous population. Cancer nurses also find it a challenge to be fully informed about the overall management plans for patients with hematologic malignancies, especially for those patients with relatively less predictable care trajectories.10

Emerging evidence about the short- and long-term physical, emotional, and social impact of a hematologic malignancy highlights the potential for comprehensive interventions to reduce distress and improve QoL.8,11 Specific patient needs that may be the focus of intervention include fatigue, cognitive changes, medication adherence, minimizing treatment-related toxicities, maintaining healthy diet, reduced physical activity, loss of fertility, changes to sexual function, altered body image, difficulty adjusting to normal life, depression, anxiety, fear of cancer recurrence, and unaddressed informational needs.4,8,9,12 A recent Western Australian study conducted with 66 adults who had completed treatment for hematologic malignancies also highlighted patient needs for good care coordination and communication between treating doctors at the end of treatment.4 These findings indicate a need for a well-coordinated approach to survivorship care for patients at the end of treatment.

It is clear that this group of patients requires high-quality, effective survivorship interventions. Two recent integrative reviews7,13 examined the models of care, survivorship care plans, and treatment summaries for patients with hematologic malignancies. Both reviews concluded that there is a lack of investigations specific to this group, and high-quality, randomized controlled trials are required. We propose that patients with hematologic malignancies require complex, tailored survivorship interventions. It is important that the design of future randomized controlled trials should consider priority issues below: (1) What is the most appropriate and effective model of survivorship care for improving QoL and other outcomes? (2) What subgroups of patients (eg, adolescent and young adults) tend to benefit from a structured survivorship intervention? (3) What is the cost-effectiveness of different models of care? (4) How are all the essential components of the survivorship care best coordinated to achieve best outcomes, who should coordinate the care, and what is the role of each of the interdisciplinary healthcare team? (5) What long-term toxicities/patient-perceived unmet needs should be prioritized? (6) What surveillance responsibilities can be delegated to primary healthcare professionals and the patient? (7) How are patients and caregivers/family members best supported to enable effective self-management? (8) How can the use of technology enable patients from the remote and rural areas to benefit the proposed model of care? The lack of evidence to inform care means that cancer care professionals and policy makers are running blind. There is a risk for current resources to be invested into ineffective practices in the absence of evidence. Hence, it is important that clear evidence must be made available to inform clinical and policy decisions, to ensure health dollars are spent judiciously, with an ultimate aim to improve the outcomes for patients with hematologic malignancies.


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