Caregivers, Transitions, and a Chronic Disease Model

Diagnoses of hematologic malignancies are less common than solid tumor diagnoses, but several advances over the last decade have led to improved survival for the majority of blood disorders. The diagnostic evaluation of these conditions has gotten better; risk-adapted treatment strategies have been developed; and supportive care has evolved.1 In light of these advances, many of these diseases are now thought of as “chronic” in nature.2

However, I would argue that, without caregivers, these numbers would not be so favorable. And yet, research on the caregiver, caregiver strain, caregiver symptom burden, and caregiver quality of life is limited for the hematologic malignancies.3

Supporting the Patient and the Caregiver

Caregivers, as expected, are most often spouses or partners (or “formal caregivers”); therefore, we would expect the majority of these caregivers to be close in age to the patient who is living with the hematologic malignancy. We also know that most patients are older at the time of diagnosis (65–75 years of age), placing the caregivers at an age where they too may be likely to have chronic illnesses.

Diagnosis of a hematologic malignancy often requires immediate treatment of the patient, and sometimes hospitalization. For younger people who assume the role of caregiver, this can often be an abrupt transition, placing additional strain on the patient-caregiver dyad, family dynamics, and – typically – finances.4

That strain is particularly evident in patients with hematologic malignancy who need a hematopoietic stem cell transplant. Before proceeding with transplant, patients must have a “reliable caregiver” available – a person (or group of people) who will be readily available, 24/7 to the transplant patient and able to manage the day-to-day logistics of care. In many cases, this includes providing direct care to the patient.

Transplant patients, in particular, are often in and out of the hospital setting or require frequent, often daily, visits during the post-transplant period.

The need for reliable care extends beyond the immediate post-transplant period, as well. These patients are likely to require continuous or episodic treatment for the remainder of their lives. The chronic disease trajectory is also characterized by variability in survival and time to progression or relapse; each relapse brings new challenges, and each episode of care creates patient and caregiver vulnerability.5

An Underappreciated Role

By default, caregivers are expected to “come along for the ride” – and it is by no means an easy one.

The majority of care for hematologic malignancy patients who have received a bone marrow transplant is provided in the outpatient setting, where each episode of care requires rapid assimilation of complex information and development of self-management and life-management skills (injections, line care, medication administration, symptom monitoring, finances, transportation, etc.).5,6

The complexity of self-management skills and behaviors of patients and caregivers varies based on a multitude of factors, including individual disease attributes, the patient’s treatment plan, the general health of the patient, and the social and financial situations unique to the survivor-caregiver dyad.7

Despite the complicated and vital role that a caregiver plays in the patients’ life, formal support programs for caregivers are scarce. As advanced practitioners, our goal is to take care of our patients – but we can’t forget about their caregivers.

Understanding the dynamics of the patient-caregiver dyad, the strengths and weaknesses unique to that relationship, the common elements of caregiver stress or strain, and available tools and strategies to promote a sense of control and enhance self-management skills may improve the health-related quality of life for both patients with a hematologic malignancy and their caregivers. Integrating health informatics into patient care, as well as caregiver support, will help us expand and improve these support services to more patient-caregiver dyads.

Admittedly, my 30 years of experience in oncology – 20 of those as an advanced practitioner – have been more intently focused on the patient than the caregiver. My personal experiences acting as a caregiver have given me a newfound perspective on these relationships, both for my mother-in-law and father-in law (both in their 90s) who died of cancer – and were lucky enough to stay in their own home – and, more tragically, for my niece who died very quickly and difficultly from pancreatic cancer at the age of 41.

As we care for our patients, we need to understand the role of our patients’ caregivers – what we expect of them and how we can improve our support of them. This is, in part, my motivation for making this the focus of my PhD dissertation.

Wish me luck – and remember to take an extra minute to talk with caregivers, listen to them, and offer them support.


  1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2015. Cancer J Clin. 2015;65:5-29.
  2. Kurtin S. Primary care of the cancer survivor: A collaborative continuum based model of care. In: Payne J, ed. Current trends in oncology nursing. Pittsburgh, PA: Oncology Nursing Society; 2012:204-205.
  3. Molassiotis A, Wilson B, Blair S, et al. Living with multiple myeloma: experiences of patients and their informal caregivers. Support Care Cancer. 2011;19(1):101-11.
  4. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology. 2010;19:1013-25.
  5. Kurtin S, Lilleby K, Spong J. Caregivers of multiple myeloma survivors. Clin J of Oncol Nurs. 2013;17 Suppl:25-32.
  6. Ferrell B, Hanson J, Grant M. An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care of oncology family caregivers. Psychooncology. 2013;22:1645-52.
  7. Bevans MF, Sternberg EF. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA. 2012;307:398-403.