Methods: A narrative literature review was conducted to explore the needs and models of care for patients undergoing hematopoietic stem cells transplantation. Literature searches were conducted in Medline and CINAHL between October 2017 and November of 2018. This literature review was guided by three main research questions: 1)What is the trajectory of care for patients undergoing allogeneic stem cells transplant? 2) What are the main roles and responsibilities of nurses and advanced practice nurses with this population? and 3) What are the needs of this patient population and how are they addressed? Keywords such as hematopoetic stem cell transplantation, care trajectory, nurse, advanced practice nurse responsibilities, patient experience, supportive care, and needs were used in combination to address each research question. All questions were limited to the English language. Studies on pediatric population were also excluded due to the different needs of this population. No date limit was set except for question 3 which was limited to articles published within the last 10 years due to the high volume of matches.
Results: For the first research question, a total of 7 matches were found using the original key words. Due to the lack of results, search terms were expanded to include hematological malignancies. In total, 355 matches were found and 5 articles (some exceeding the 5 year range) were relevant to the topic of trajectory of care for HSCT patients. The trajectory of care for HSCT has been described chronologically using time frames (beginning of illness, during cancer management, and after cancer management) or using phases (diagnosis, treatment, chronic phase, end of life phase) (Heli, Helena, Liisa, Kimmo, & Heikki, 2015; Brant, 2010). Existing literature emphasizes on the importance of timing in HSCT, indicating that referral to a transplant centre early in the disease process is associated with better outcomes. Palliative care should also be integrated early for at-risk patients, as the fluctuating nature of hematological malignancies can cause the patient to deteriorate rapidly into a terminal event (Button, Chan, Chambers, Butler, & Yates, 2017).
Common physical issues experienced by HSCT recipients are fatigue, gastrointestinal issues, and numbness in hands and feet (Grulke, Albani, & Bailer, 2012). Psychosocial issues that were frequently reported are depression/sad mood, concentration problems, anxiety, and sexual problems (Braamse et al., 2015). There are some notable differences between allogeneic HSCT and autologous HSCT in terms of the severity of symptoms. In allogeneic HSCT, patients reported more mouth sores (Braamse et al., 2015). Auto-SCT patients reported more sexual problems and less depression/sad mood (Braamse et al., 2015). These findings echoed those for research questions 2 and 3.
For the second research question, a total of 26472 matches were found and 4 were relevant to address the question of nursing role. Existing literature indicates that nurses serve as the primary educator for HSCT recipients to address all domains of quality of life. Through one on one education, distribution of written materials, and referral to appropriate resources, nurses provide education to patients and caregivers on managing physical issues such as hyperglycemia and comorbidities; social issues such as caregiver strain, sexuality, and disabilities; spiritual and survivorship issues; and most importantly, psychological issues such as depression, anxiety and homesickness (Cooke, Grant, & Gemmill, 2012). Other important roles nurses play in HSCT patients includes symptom management, pain management, mental and emotional adaptation to illness, and infection control (Tee, Balmaceda, Granada, Gowler, & Payne, 2013). Many of those were found in questions 1 and 3.
While the research on the role of advanced practice nurses in HSCT is still ongoing, current findings suggest that patients cared for by advanced practice providers had similar outcomes to those cared for by medical residents. Research by Shah et al. (2015) did not show a significant difference in 100-day survival rates, 100-day relapse rate, length of stay, readmission rates, and mortality. The comparable patient outcomes suggest that advanced practice providers are a potential alternative for HSCT patients.
The final research question is to explore and identify how providers and caregivers can address patient needs in this population with care coordination to enhance their experience and quality of life post-HSCT. A total of 1050 matches were found and 171 were relevant. The following types of patient needs and supports have been examined in the literature for this population: a) information support to enhance patient satisfaction and better health-related quality of life (Cohen, Jenkins, Holston, & Carlson, 2013), b) positive emotional support from caregivers to articulate care (Bergkvist et al., 2013; Morrison, Pai & Martsolf, 2018) and c) psychological and physical symptom management in preventing and managing post-transplantation complications according to individualized needs (Carpenter et al., 2015; Chang, Hwang, Muo, Hsu, & Teng, 2016)
The literature review identifies physical and psychological needs in this patient population with the most commonly prevalent complications examined in the relevant studies as follows. Major physical complications requiring symptom management interventions include graft-versus-host disease (GVHD), oral mucositis (OM), cardiovascular disease (CVD), and bronchiolitis obliterans syndrome (BOS). Psychological and social needs were further identified in the literature search. Setting of care, specifically home versus hospitalized care, is another prevalent theme in the existing literature to explore and address the complexity of the disease. Bergkvist et al., (2013) suggest that home care enabled patients to experience values of security, independence, freedom, and hope, which were all identified as positive coping strategies. These findings can hopefully contribute to the establishment of a more coordinated care system, resulting in better patient care outcomes.
Conclusion: This is the first known literature review that explores the “big picture” for patients undergoing HSCT. Findings indicated that the literature on HSCT patients is hugely fragmented: Trajectory of HSCT patients was depicted chronologically by stages. The literature also focused on the medical aspects of care with studies examining isolated medical issues such as infections post transplant. This could be due to the complexity of disease and high acuity of this population. Moreover, the nurse’s role was described to address physical symptoms mainly, with less emphasis on psychosocial issues. Little was noted on interprofessional collaboration to facilitate holistic, efficient care. Advanced practice nurses (APNs) were shown to be effective alternatives to medical residents in caring for patients after HSCT. Such finding supports the expanding role of APNs and nurse practitioners.
Given the fragmented literature on organizing care for this population with high complexity and acuity, an integrated model or pathway for HSCT patients maybe beneficial for patients, families and providers to anticipate and plan care collaboratively. Future research needs to examine the feasibility of developing pathways or flow sheet to facilitate collaborative care. Based on our findings, clinicians will note common issues experienced by this population and may act proactively to advocate early or preventive interventions.