UP FRONT
Advanced Practice Professionals
In this column, we will hear from an increasingly represented and crucial
component of hematology/oncology care: advanced practice professionals/
advanced practitioners. In this edition, Sandra Kurtin, RN, MS, discusses the
vital role of caregivers.
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
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
FIGURE The Multidimensional Role of Cancer Caregivers
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.
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ASH Clinical News
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
char¬acterized 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 def V