Late Effects and Long-Term Follow-Up

Kenyon, Michelle; Murray, John; Quinn, Barry; Greenfield, David; Trigoso, Eugenia

doi:10.1007/978-3-319-50026-3_14

Cited by 9 publications

(9 citation statements)

References 41 publications

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“…The holistic focus and the role of the cancer nurse addressed most of the challenges that patients face during the first year after HSCT. Hematopoietic stem cell transplantation patients are confronted with a prevailing fatigue, should redefine their previous roles, must adopt a healthy lifestyle and therapy compliance, and have concerns about work and finance 6–8 . Evaluation of this intervention showed that the cancer nurse is ideally suited in supporting patients with these more holistic and practical domains.…”

Section: Discussionmentioning

confidence: 99%

“…Hematopoietic stem cell transplantation patients are confronted with a prevailing fatigue, should redefine their previous roles, must adopt a healthy lifestyle and therapy compliance, and have concerns about work and finance. [6][7][8] Evaluation of this intervention showed that the cancer nurse is ideally suited in supporting patients with these more holistic and practical domains. In studies of complex survivorship care, these 2 items were also seen as the most important concepts of the used interventions.…”

Section: Fidelitymentioning

confidence: 99%

“…Despite the increasing number of successful HSCTs and the improvement of the early and long-term outcomes, the impact of the side effects of both autologous and allogeneic HSCT should not be underestimated. Especially during the first year after HSCT, patients may experience temporary or permanent symptoms (eg, fatigue, loss of appetite, pain) that affect domains of physical, mental, social, and spiritual well-being, thereby interfering with normal daily live affecting both patients’ and families’ roles 6–8 . In the qualitative study of van der Lans et al 9 in which 10 allogeneic HSCT patients were interviewed 1 year after their HSCT, patients had a common pattern of recovery involving 5 main phases: survive, on the receiving end, bring under control, start recuperation and retrospection.…”

Section: Introductionmentioning

confidence: 99%

“…Especially during the first year after HSCT, patients may experience temporary or permanent symptoms (eg, fatigue, loss of appetite, pain) that affect domains of physical, mental, social, and spiritual well-being, thereby interfering with normal daily live affecting both patients' and families' roles. [6][7][8] In the qualitative study of van der Lans et al 9 in which 10 allogeneic HSCT patients were interviewed 1 year after their HSCT, patients had a common pattern of recovery involving 5 main phases: survive, on the receiving end, bring under control, start recuperation and retrospection. Patients indicated that they needed aftercare in the first year posttransplant.…”

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confidence: 99%

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Evaluation of a Nurse-Led Patient Navigation Intervention

et al. 2021

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Hematopoietic stem cell transplantation Nurse-led intervention Patient navigation Quality of care Quality of life Self-management Background: Complex survivorship cancer care requires nurse-led interventions.Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients.Objective: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention. Methods: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and selfmanagement behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups. Results: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group. Conclusion: The holistic focus of this nurse-led

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Section: Discussionmentioning

confidence: 99%

Section: Fidelitymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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confidence: 99%

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Evaluation of a Nurse-Led Patient Navigation Intervention

et al. 2021

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“…As previously reported, thyroid sequelae may occur early following HSCT, but in most patients they may not become overt until decades into survivorship, mostly based on patient-specific causative factors and on the protocols undertaken ( 6 , 73 , 114 , 115 ).…”

Section: Thyroid Health Following Hsct: Practical Recommendation For ...mentioning

confidence: 93%

Thyroid function disorders and secondary cancer following haematopoietic stem cell transplantation in pediatrics: State of the art and practical recommendations for a risk-based follow-up

et al. 2022

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Thyroid disorders (TD) represent a remarkable share of all the late morbidities experienced following pediatric haematopoietic stem cell transplantation (HSCT), with long-term reported occurrence often exceeding 70%. In addition, the data collected on wide cohorts of survivors assessed longitudinally outlined a progressive increase in the cumulative incidence of TD as far as 30 years following transplantation. Accordingly, a life-long monitoring of thyroid health is warranted among patients exposed to HSCT in childhood, in order to early detect TD and undertake a prompt dedicated treatment. Although several national and international consortia have provided recommendations for the early detection of thyroid disorders among childhood cancer survivors exposed to radiotherapy and alkylating agents, no guidelines specifically and thoroughly focused on HSCT-related TD have been published to date. As stem cell transplantation has become the standard-of-care in a growing body of non-oncological conditions, this urge has become pivotal. To highlight the challenging issues specifically involving this cohort of patients and to provide clinicians with the proposal of a practical follow-up protocol, we reviewed published literature in the light of the shared experience of a multidisciplinary team of pediatric oncologists, transplantologists, pathologists and endocrinologists involved in the long-term care of HSCT survivors. As a final result, we hereby present the proposals of a practical and customized risk-based approach to tailor thyroid health follow-up based on HSCT-related detrimental factors.

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Defining curative endpoints for transfusion‐dependent β‐thalassemia in the era of gene therapy and gene editing

Corbacioglu,

Frangoul,

Locatelli

et al. 2023

American J Hematol

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Abstractβ‐thalassemia is a monogenic disease that results in varying degrees of anemia. In the most severe form, known as transfusion‐dependent β‐thalassemia (TDT), the clinical hallmarks are ineffective erythropoiesis and a requirement of regular, life‐long red blood cell transfusions, with the development of secondary clinical complications such as iron overload, end‐organ damage, and a risk of early mortality. With the exception of allogeneic hematopoietic cell transplantation, current treatments for TDT address disease symptoms and not the underlying cause of disease. Recently, a growing number of gene addition and gene editing‐based treatments for patients with TDT with the potential to provide a one‐time functional cure have entered clinical trials. A key challenge in the design and evaluation of these trials is selecting endpoints to evaluate if these novel genetic therapies have a curative versus an ameliorative effect. Here, we present an overview of the pathophysiology of TDT, review emerging gene addition or gene editing therapeutic approaches for TDT currently in clinical trials, and identify a series of endpoints that can quantify therapeutic effects, including a curative outcome.

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Late Effects and Long-Term Follow-Up

Abstract: Allogeneic stem cell transplantation was successfully performed in 1968, and its use has grown significantly over the past five decades with the total number now exceeding 1 million patients.

Cited by 9 publications

References 41 publications

Evaluation of a Nurse-Led Patient Navigation Intervention

Evaluation of a Nurse-Led Patient Navigation Intervention

Thyroid function disorders and secondary cancer following haematopoietic stem cell transplantation in pediatrics: State of the art and practical recommendations for a risk-based follow-up

Defining curative endpoints for transfusion‐dependent β‐thalassemia in the era of gene therapy and gene editing

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