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PURPOSE: Survivors of blood and marrow transplantation (BMT) require life-long follow-up involving both tertiary transplant and primary care services. This paper explores the attitudes and preferences of BMT survivors and their carers regarding the transition from BMT centre care to primary care. METHODS: This qualitative study involved semi-structured interviews with BMT survivors and carers from New South Wales, Australia. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Twenty-two BMT survivors and six carers were interviewed. Two themes emerged: (1) 'Relationships with health professionals' and (2) 'Challenges of long-term care'. Participants, particularly rural/regional survivors, had diverse views on the availability of community BMT expertise and identified a range of strategies to optimise care for BMT survivors. CONCLUSIONS: These results highlight the importance BMT survivors and carers place on their relationships with, and ongoing access to, specialised BMT teams for long-term care. While some are happy to receive community-based care, concerns exist about the capacity of primary care providers, particularly in rural and regional areas. Improved support, communication and coordination between BMT centres and primary care may help facilitate a person-centred, sustainable shared care model. Provider education, use of telehealth and clear delineation of roles and responsibilities may assist in this transition. IMPLICATIONS FOR CANCER SURVIVORS: As BMT survivors live longer post-treatment, transitions of care and sustainable long-term care models are needed. A shared care approach, integrating specialised BMT teams and local primary care, may optimise outcomes but requires further development to balance accessibility, preferences, and specialised care needs.
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Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is an intensive but effective treatment for malignant and non-malignant diseases. However, long-term survival often comes at a cost, with survivors experiencing chronic morbidity and are at risk of relapse and secondary malignancy. This study aimed to describe decisional regret in a large cohort of Australian long-term allo-HSCT survivors. A cross-sectional survey was conducted with 441 adults in New South Wales, assessing quality of life (QoL), psychological, social, demographic, and clinical variables. Less than 10% of survivors expressed regret, with chronic graft-versus-host disease being the most important clinical factor. Psycho-socioeconomic factors such as depression, lower QoL scores, lower household income, higher treatment burden, and not resuming sex post-HSCT were also associated with regret. Findings highlight the need for valid informed consent and ongoing follow-up and support for allo-HSCT survivors dealing with life post-transplant. Nurses and healthcare professionals play a critical role in addressing decisional regret in these patients.
Assuntos
Transplante de Células-Tronco Hematopoéticas , Qualidade de Vida , Adulto , Humanos , Estudos Transversais , Austrália , Transplante de Células-Tronco Hematopoéticas/psicologia , Sobreviventes/psicologiaRESUMO
BACKGROUND: Typhoid fever is a major public health problem in low-resource settings. Vaccination can help curb the disease and might reduce transmission. We have previously reported an interim analysis of the efficacy of typhoid conjugate vaccine (TCV) in Nepali children. Here we report the final results after 2 years of follow-up. METHODS: We did a participant-masked and observer-masked individually randomised trial in Lalitpur, Nepal, in which 20â019 children aged 9 months to younger than 16 years were randomly assigned in a 1:1 ratio to receive a single dose of TCV (Typbar TCV, Bharat Biotech International, India) or capsular group A meningococcal conjugate vaccine (MenA). Participants were followed up until April 9, 2020. The primary outcome was blood culture-confirmed typhoid fever. Cases were captured via passive surveillance and active telephone surveillance followed by medical record review. The trial is registered at ISRCTN registry, ISRCTN43385161 and is ongoing. FINDINGS: From Nov 20, 2017, to April 9, 2018, of 20â119 children screened, 20â019 participants were randomly assigned to receive TCV or MenA vaccine. There were 75 cases of blood culture-confirmed typhoid fever included in the analysis (13 in the TCV group and 62 in the MenA group) over the 2-year period. The protective efficacy of TCV against blood culture-confirmed typhoid fever at 2 years was 79·0% (95% CI 61·9-88·5; p<0·0001). The incidence of typhoid fever was 72 (95% CI 38-123) cases per 100â000 person-years in the TCV group and 342 (95% CI 262-438) cases per 100â000 person-years in the MenA group. Adverse events occurring within the first 7 days post-vaccination were reported previously. INTERPRETATION: The final results of this randomised, controlled trial are in keeping with the results of our published interim analysis. There is no evidence of waning protection over a 2-year period. These findings add further support for the WHO recommendations on control of enteric fever. FUNDING: Bill & Melinda Gates Foundation.