Blood and Marrow Transplantation Long Term Management

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Hematopoietic cell transplantation (HCT) provides curative therapy for a variety of diseases. Over the past several decades, significant advances have been made in the field of HCT, to the point where HCT has become an integral part of treatment modality for a variety of hematologic malignancies and some nonmalignant diseases. HCT remains an important treatment option for a wide variety of hematologic and nonhematologic disorders, despite recent advances in the field of immunologic therapies. Factors driving this growth include expanded disease indications, greater donor options (expanding unrelated donor registries and haploidentical HCT), and accommodation of older and less fit recipients. 
The development of less toxic pretransplant conditioning regimens, more effective prophylaxis of graft-versus-host disease (GVHD), improved infection control, and other advances in transplant technology have resulted in a rapidly growing number of transplant recipients surviving long-term free of the disease for which they were transplanted. The changes over decades in the transplant recipient population and in the practice of HCT will have almost inevitably altered the composition of the long-term survivor population over time. Apart from an increasingly older transplant recipient cohort, the pattern of transplant indications has shifted from the 1990s when chronic myeloid leukemia made up a significant proportion of allo-HCT indications. Changes in cell source, donor types, conditioning regimens, GVHD prophylaxis, and supportive care have all occurred, with ongoing reductions in both relapse and non-relapse mortality (NRM) have been demonstrated. 
These patients have increased risks for a variety of late complications, which can cause morbidity and mortality. Most long-term survivors return to the care of their local hematologists/oncologists or primary care physicians, who may not be familiar with specialized monitoring and management of long complications after HCT for this patient population. As HCT survivorship increases, the focus of care has shifted to the identification and treatment of long-term complications that may affect quality of life and long-term morbidity and mortality. 
Preventive care as well as early detection and treatments are important aspects to reducing morbidity and mortality in long-term survivors after allo-HCT. This second edition, 
, provides up-to-date information about diagnosis, screening, treatment, and long-term surveillance of long-term survivors after HCT.

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Prevention Treatment Other Agents Recommendation for the Survivor/General Practitioner Avascular Necrosis Screening/Surveillance Prevention Treatment Recommendations for the Survivor and General Practitioner References CHAPTER 31: Late neurologic complications Introduction Pathophysiology Frequency/cumulative incidence Risk Factors Clinical Entities Surveillance/ screening Prevention Recommendation for the survivors / general practitioner References CHAPTER 32: Neurocognitive dysfunction Introduction Definition and critical domains of neurocognitive dysfunction Risk factors and correlates Biomarkers as potential mechanisms Neurocognitive dysfunction in adult patients with HCT Neurocognitive dysfunction in special populations Assessment Interventions Concluding remarks References CHAPTER 33: Psychological Distress Introduction Late survivorship Screening for distress Treatment Recommendations for the survivors/general practitioner References CHAPTER 34: Evaluation and management of fatigue in survivors of allogeneic hematopoietic stem cell transplantation Introduction Pathophysiology of Fatigue in HSCT Survivors Pharmacologic interventions Non‐pharmacologic interventions Complementary and integrative therapies Summary References CHAPTER 35: Social Issues Introduction Social Factors Associated with HCT Access and Outcomes Influence of HCT on Social Well‐being Relationship Between Social and Psychological Factors Instruments to Assess Social Risks Conclusion References CHAPTER 36: Health‐related quality of life in adult and pediatric survivors Introduction Quality of life Clinical Features of Treatment with Allogeneic HSCT Health‐related Quality of Life Physical FunctionAdults Psychological function Social and role functioning Benefit‐finding and post‐traumatic growth Healthy lifestyle and health‐promoting behaviors Application to practice Interventions Summary References

9 SECTION 3: Supportive care and patients reported outcomes CHAPTER 37: Immunosuppressive agents and monitoring in long‐term survivors GVHD Prophylaxis Agents: GVHD Treatment Agents References CHAPTER 38: Nutritional support and nutritional supplementation Introduction (Definition; subgroups) Pathophysiology Frequency/cumulative incidence Risk factors Surveillance/ screening Prevention Treatment Recommendation for the survivors / general practitioner References CHAPTER 39: Daily routines and healthy lifestyle guidelines Background Education Infection Prevention Compliance with Scheduled Follow Up Health Maintenance Screenings Community/Home Support Summary References CHAPTER 40: Prevalent psychosocial adjustment issues and solutions Introduction The patient and their support system: coping with stress in the long‐term care setting The patient and caregiver: facing intimacy issues Other quality of life issues for the stem‐cell transplant patient Conclusion References CHAPTER 41: Complementary and alternative medicine in HSCT Introduction Natural products in HCT recipients Mind and body practices in HCT recipients Other complementary and alternative medicine Safety of complementary and alternative medicine Approach to CAM discussions Future directions References CHAPTER 42: Impact of adherence in outcome of long‐term survivors Introduction Adherence Non‐Adherence Non‐intentional and intentional non‐adherence HSCT a risk factor for non‐adherence Recommendation for healthcare providers Future research Conclusion References CHAPTER 43: Prominent role of allied health professionals Introduction Immunizations References CHAPTER 44: Patient reported outcomes Introduction Basic concepts about PROs Perceived health status Physical function and symptom burden post‐HCT Psychological aspects post‐HCT Social aspects post‐HCT Behavioral aspects post‐HCT PROs and GVHD PROs as predictors of HCT survival Conclusion References CHAPTER 45: Caregivers of long‐term survivors Introduction Frequency/cumulative incidence Risk factors Surveillance/ screening Recommendation for the survivors/caregivers/general practitioner References CHAPTER 46: Patient’s perspective Lilian Living a normal Life Hello Cancer So, here we go! Staging the Cancer Staging and Sarah Cannon Clinical Trials Lymphomaniac Remission PET Scan and What's Next? Vanderbilt Hematology and Stem Cell Clinic Transplant Day Now for the Fun Part: Four Months of Treatment Going Home Returning to Everyday Life Twenty‐Three and Me / Ancestory.Com Medical Surprises and Life for the past 10 Years Blood Clots More Post‐Transplant Medical Surprises Colonoscopy Colon Cancer Surgery Tumor Board Wake Up Call Radiation Treatments The Puppy from Hell The Move to Florida The last of the Cancer‐Related Episodes The Continuation of the Story but not the End So Much to be Thankful For

10 APPENDIX 1: Commonly used transplant‐related medications in long‐term survivors References

11 APPENDIX 2: The eGVHD App References

12 Index

13 End User License Agreement

List of Tables

1 Chapter 2 Table 2.1 Transplant Registries Collecting Data on HCT Survivors

2 Chapter 3 Table 3.1 Different models of long‐term transplant clinics Table 3.2 Significant aspects to consider when building up a long‐term follow...

3 Chapter 4 Table 4.1 Telehealth modalities that can apply to Long Term Follow Up (LTFU) ... Table 4.2 Safeguarding medical information and photos in telehealth Table 4.3 Benefits and challenges of the telemedicine LTFU model for HCT surv...

4 Chapter 5 Table 5.1 Elements of a survivorship care plan for patients treated with hema... Table 5.2 Check‐list of recommendations for counseling of the long‐term survi... Table 5.3 Summary of recommendations for screening and prevention of late com...

5 Chapter 6 Table 6.1 Non‐relapse late and very late effects after allogeneic HCT

6 Chapter 7 Table 7.1 Common Late Effects and Complications after Autologous Hematopoieti...

7 Chapter 8 Table 8.1 LTFU recommendations for survivors

8 Chapter 10 Table 10.1 Summary recommendations for screening and prevention of late compl... Table 10.2 Screening recommendations for subsequent malignancies in survivors...

9 Chapter 13Table 13.1 Preventive options of infections in long‐term survivors after allo...Table 13.2 Preventive options of infections in long‐term survivors after auto...

10 Chapter 14Table 14.1 Risk factors for progression to lower respiratory tract diseaseTable 14.2 Infection Control measures to reduce risk of CRV infection

11 Chapter 15Table 15.1 Classification of patient/donor depending on the HBV markersTable 15.2 Recommended measures in HCT with patients/donors with HBV infectio...Table 15.3 Possible results of the HCV screening before HCTTable 15.4 Recommended AVT against HCV depending on the viral genotypeTable 15.5 Recommended measures in HCT when patient or donor are infected by ...Table 15.6 More frequently used antiviral drugs and combinationsTable 15.7 Effect of anti‐HIV agents on HSCT drugs metabolization

12 Chapter 16Table 16.1 Approaches proposed to identify associated predictive biomarkers o...Table 16.2 Specific criteria for cGVHD from the 2014 Pathology Working GroupTable 16.3 Criteria for the diagnosis of cGVHD skin: categorization of diagno...

13 Chapter 17Table 17.1 Types of ocular complications after HSCT; screening; prevention an...Table 17.2 Treatment for ocular GVHD

14 Chapter 18Table 18.1 Oral complications of HCT

15 Chapter 19Table 19.1 Thyroid manifestations in stem cell transplant recipients, with re...

16 Chapter 20Table 20.1 When to refer to a Gynecology or Urology clinicianTable 20.2 Hormone and contraceptive options at the time of transplant

17 Chapter 21Table 21.1 When to refer to a Gynecology or Urology clinicianTable 21.2 Hormone and contraceptive options at the time of transplant

18 Chapter 24Table 24.1 Diagnostic criteria of BOS following HSCTTable 24.2 Comparison between bronchiolitis obliterans syndrome and cryptogen...

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