Adult‐related haematopoietic stem cell donor experiences and the provision of information and psychosocial support: A systematic literature review

Abstract

For blood cancer patients, haematopoietic stem cells (HSC) donated by a relative can be lifesaving. However, related donors can face significant physical and psychosocial challenges. As the demand for adult‐related HSC donors is increasing, it is important to review our understanding of adult‐related HSC donors’ need for and availability of information and psychosocial support with a view to identifying gaps in the literature. A systematic review of relevant studies (2000–2017) was conducted using five databases with supplementary hand searching. Sixteen studies involving 1,024 related HSC donors met the following criteria: English or Dutch language, peer‐reviewed, sampled first‐time‐related HSC donors, ≥18 years, haematological malignancies, assessed psychosocial aspects, retrospective or prospective and with or without comparison group. Data were abstracted, and study quality was assessed using the PRISMA criteria. Studies contained limited information on the provision of information and psychosocial support. Most studies addressed pre‐donation information, and none reported providing information or support to donors post‐donation. Additionally, few studies formally assessed unmet needs. Recommendations include improved transparency of reporting for the availability, sources and timing of information and psychosocial support, and the identification of unmet needs to enable the development of educational and psychosocial interventions for this invaluable donor population.

Supporting family members requested to donate hematopoietic stem cells to a relative: development and pilot testing of a psycho-educational resource

“…It is not uncommon for donors to come from non–English-speaking backgrounds just for health investigation and donation. [12] This raises the need for a separate study specifically aimed at donors of non–English-speaking backgrounds. Finally, in our previous study, donors varied in their preferences for how information is delivered.…”

“…The content of the resource was based on our earlier findings regarding the experiences, needs, and preferences of related donors and of the transplant nurses and physicians (referred to as "transplant professionals" hereafter) caring for them and on a review of the literature. [12][13][14] Members of the project team also presented information about key topics to be included in the resource. Existing coping interventions and educational resources were drawn on for guidance, including (1) the distress thermometer developed by the National Comprehensive Cancer Network, [16] (2) consumer information booklets and webpages developed by established blood cancer charities, [17,18] and (3) the online tool, "My Journey," [19] developed by the Breast Cancer Network Australia.…”

“…One caregiver and one patient member of the consumer engagement group responded, and their feedback was incorporated into the final version for pilot testing. An overview of the content included in the acceptability version of the Donating to your Relative resource and the key needs addressed (as identified in previous studies [12][13][14] ) is presented in Table 1.…”

Prevalence and risk factors of loneliness among patients with hematological malignancies

“…It is a collective term for a group of malignant clonal diseases derived from hematopoietic tissues and organs. [1,2] It has been noted that the incidence of hematological malignancies has increased rapidly over the past ten years, and the related deaths are still on the rise. [3,4] In China, hematological malignancies are also one of the most common cancers and the mortality of leukemia is particularly high.…”

Factors Associated With Low Self-Esteem Among Patients With Hematologic Malignancies: A Cross-Sectional Study

“…Hematologic malignancies are malignant clonal diseases originating from hematopoietic tissue and have become the fourth most common malignant tumor worldwide ( 1 , 2 ). This disease is also among the top 10 high-incidence tumors in China, with leukemia being the 9th leading cause of cancer-related deaths after significant increases in its incidence ( 3 , 4 ).…”