Treatment of acute lymphoblastic leukemia (ALL) comprises induction, consolidation, and maintenance therapy, which can span 2 years and involve multiple stays in tertiary or community hospitals to receive chemotherapy and high-level care.1,2 Between treatment cycles, patients can often return home.3 Although this transition of care to the outpatient setting may be welcome, it is also complex and can feel overwhelming to patients and their caregivers.2,3
During the transition of care from the hospital to the home setting, clinicians play a vital role in supporting patients and families as they navigate major transitions. The success of the transition of care for patients with ALL depends, in large part, on the efforts of a team of hospital and outpatient clinicians to provide comprehensive, coordinated care and support.2 Life stage also plays an important role in determining which challenges persons with ALL may face; thus, an age-specific consideration of psychosocial issues is integral to providing patient support during transitions in care.4,5 For example, although a young adult may be returning home, lingering adverse effects of fatigue may prevent resumption of usual activities such as going out with friends.4
The transition of care from hospital to the outpatient setting may be particularly challenging for parents and other caregivers to children with ALL. In addition to coping with changes that occur following a cancer diagnosis in a child, families must undergo complex transformations regarding how to care for a sick child in the home setting.3 During the transition of care, parents report apprehension with newly required care, immediate day-to-day impacts, and the need for implementing guidelines for the child’s care.3 Parents experience fear and insecurity regarding their ability to provide a high level of care and identify clinical complications.3 They may also feel overwhelmed by needed adaptations, including immediate changes that interfere with family functioning.3 Indeed, families may need to implement significant changes in their work and caregiver roles to provide needed care to a sick child.3 In addition to these changes, parents report receiving a large volume of discharge instructions on a wide variety of topics, including medication, environmental precautions, prophylactic measures, diet, and general care.3 Home-administered drug therapy is a source of particular stress for parents, as errors in following medication instructions are common and can impact treatment outcomes.3
Clinicians are responsible for addressing a wide range of challenges encountered during the ALL transition of care to the outpatient setting. Nurses serve as a primary and trusted source of information and support as families transition to the outpatient setting.3 In addition to providing guidance, education, and training to caregivers, nurses can anticipate challenges and offer emotional support.2,3 Pharmacists also play a crucial role during these care transitions. For patients approaching hospital discharge, pharmacists are tasked with reconciling medications, supplying patient education, and providing outpatient follow-up to ensure safe and correct use of medications.6 Providing support and guidance to patients with ALL and their caregivers can aid in the successful transition of care to the home and outpatient setting.
- American Cancer Society (ACS). Typical treatment of acute lymphocytic leukemia. Updated October 8, 2021. www.cancer.org/cancer/acute-lymphocytic-leukemia/treating/typical-treatment.html. Accessed November 10, 2021.
- Association of Community Cancer Centers (ACCC). Multidisciplinary acute lymphocytic leukemia care environmental scan. 2019. www.accc-cancer.org/docs/projects/acute-lymphoblastic-leukemia/all-environmental-scan_final.pdf?sfvrsn=30e98431_2. Accessed December 2, 2021.
- Silva-Rodrigues FM, Bernardo CSG, Alvarenga WA, et al. Transitional care to home in the perspective of parents of children with leukemia. Rev Gaucha Enferm. 2019;40:e20180238.
- Balliot J, Morgan M, Cherven B. Caring for the pediatric, adolescent, or young adult patient with acute lymphoblastic leukemia. Semin Oncol Nurs. 2019;35:150956.
- Lin H, Zhou S, Zhang D, Huang L. Evaluation of a nurse-led management program to complement the treatment of adolescent acute lymphoblastic leukemia patients. Appl Nurs Res. 2016;32:e1-e5.
- Shank BR, Nguyen PAA, Pherson EC. Transitions of care in patients with cancer. Am J Manag Care. 2017;23(7 Spec No.):SP280-SP284.