Blood and Marrow Transplantation Long Term Management: Survivorship after Transplant, 2nd Edition

Blood and Marrow Transplantation Long Term Management 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, Blood and Marrow Transplantation Long Term Management: Survivorship after Transplant , provides up-to-date information about diagnosis, screening, treatment, and long-term surveillance of long-term survivors after HCT.

list Of Contributors

section 1 Late Effects Concepts

1 Introduction

bipin N Savani And Andre Tichelli

2 International Blood And Marrow Registries -- Trends On Long-term Data Collection

rachel Phelan, Jakob Passweg, Helen Baldomero, Minako Iida, Yoshiko Atsuta, Shinichiro Okamoto, Mahmoud Aljurf, Feras Alfraih, And Bronwen Shaw

3 Long-term Transplant Clinic Setup

andré Tichelli, Bipin Savani, Shahrukh K Hashmi, Navneet S Majhail, And Alicia Rovó

4 Telemedicine In Patient Care Of Long-term Survivors

catherine Lee, Mihkaila Wickline, And Mary Flowers

5 Long-term Follow-up Calendar

andré Tichelli, Bipin N Savani, Shahrukh K Hashmi, Navneet S Majhail, And Alicia Rovó

6 Late Effects After Allogeneic Hematopoietic Stem Cell Transplantation

shahrukh Hashmi And Yoshihiro Inamoto

7 Late Effects After Autologous Hematopoietic Stem Cell Transplantation

rajshekhar Chakraborty And Betty Hamilton

8 Long-term Follow-up Of Children

paul Carpenter

9 Graft-versus-host Disease And Gvhd-associated Late Effects

david Michonneau, Aurélien Sutra-del-galy, And Gérard Socié

10 Screening And Prevention Guidelines For Hematopoietic Cell Transplant Survivors

neel S Batt, J Douglas Rizzo, And Navneet S Majhail

11 Biology Of Survivorship After Bmt

smita Bhatia

section 2 Specific Late Effects

12 Secondary Malignancies

aurélien Sutra-del-galy, David Michonneau, And Gérard Socié

13 Anti-infective Prophylaxis, Immunization And Prevention Of Late Infectious Complications

per Ljungman

14 Seasonal Virus Infections In Recipients And Exposure To Family Members

nosha Farhadfar, Zeina Al-mansour, And John Wingard

15 Monitoring And Management Of Hepatitis B, C, And Hiv Infection Before And After Transplantation

enric Carreras And Montserrat Rovira

16 Skin Chronic Graft-versus-host Disease

attilio Oliveri And Andrea Bacigalupo

17 Ocular Complications

alicia Rovó, André Tichelli, And Yoshihiro Inamoto

18 Oral And Dental Complications

hildegard Greinix

19 Thyroid Late Complications

juliana Matthews, Leslee Matheny, And Shubhada Jagasia

20 Pre-transplant Considerations In Gender, Reproductive, And Sexual Health

dana Shanis, Jeanne Murphy, Kate Debiec, Betty K Hamilton, Shawna Boyle, And Pamela Stratton

21 Post-transplant Considerations In Gender, Reproductive, And Sexual Health

jeanne Murphy, Dana Shanis, Kate Debiec, Betty K Hamilton, Shawna Boyle, And Pamela Stratton

22 Fertility Issues, Fertility Preservation, And Pregnancy Outcome In Long-term Survivors

alicia Rovó, Alison W Loren, André Tichelli, And Nina Salooja

23 Sexual Dysfunction In Long-term Survivors

rebecca Hunter, Sarah Thilges, Janna Gordon, Kristy Luke, Karla Cavazos, Emilee Moeke, Colleen Bruen, And Sunita Natha

24 Non-infectious Pulmonary Late Complications

ayman O Soubani

25 Cardiac And Arterial Complications

alicia Rovó And André Tichelli

26 Cardiovascular Risk Factors

kimberley Doucette And Minoo Battiwalla

27 Gastrointestinal Complications

sumona Bhattacharya, Steven Pavletic And Theo Heller

28 Hepatic Complications

christy Ann L Gilman Christopher Koh, Steven Pavletic, And Theo Heller

29 Renal Complications

insara Jaffer Sathick, And Sangeeta Hingorani

30 Post-transplantation Bone Disease

christine Ducan

31 Neurological Late Complications

enrico Maffini

32 Neurogognitive Dysfunction

david Buchbinder

33 Psychological Distress

anna Barata, Aasha I Hoogland And Heather Sl Jim

34 Persistent Chronic Fatigue

sandy Mitchell

35 Social Issues

sanghee Hong And Navneet Majhail

36 Health-related Quality Of Life In Adult And Pediatric Survivors

lori Wiener, Jenny Hoag, And Tamryn Gray

section 3 Supportive Care And Patients Reported Outcome

37 Immunosuppressive Agents And Monitoring In Long-term Survivors

katie Culos And Katie Gatwood

38 Nutritional Support And Nutritional Supplementation

shigeo Fuji

39 Daily Routines And Healthy Lifestyle Guidelines

melissa Logue

40 Prevalent Psychosocial Adjustment Issues And Solutions: Lifestyle And Social Challenges

katrina Stokes

41 Complementary And Alternative Medicine In Hsct

ibrahim N Muhsen, Bipin N Savani, And Shahrukh Hashmi

42 Impact Of Adherence In Outcome Of Long-term Survivors

corien Eeltink And Annika Kisch

43 Prominent Role Of Allied Health Professionals

catherine E Lucid

44 Patient Reported Outcome

hélène Schoemans

45 Caregivers Of Long-term Survivors

angela Moreschi Woods

46 Patient's Perspective: Memory Of A Recovered Lymphomaniac

michael Brown

appendix 1 Commonly Used Transplant-related Medications In Long-term Survivors

katie Culos And Katie Gatwood

appendix 2 The Egvhd App

hélène Schoemans

index

Edited By Bipin N. Savani, André Tichelli. Includes Bibliographical References And Index. Electronic Reproduction. Hoboken, N.j. Available Via World Wide Web. Foreword by Professor John Barrett vii Foreword by Professor John Goldman viii List of Contributors ix Section 1 Late effects concepts 1 1 Introduction to long‐term survivorship after hematopoietic cell transplantation 3 Bipin N. Savani and André Tichelli 2 International Blood and Marrow Registries: trends on long‐term data collection 6 Rachel Phelan, Jakob R. Passweg, Helen Baldomero, Minako Iida, Yoshiko Atsuta, Shinichiro Okamoto, Mahmoud Aljurf, Feras Alfraih, and Bronwen E. Shaw 3 Long‐term follow‐up program and transplant clinic setup 14 André Tichelli, Bipin N. Savani, Shahrukh K. Hashmi, Navneet S. Majhail, and Alicia Rovó 4 Telemedicine in patient care of long‐term transplant survivors 25 Catherine J. Lee, Mihkaila Wickline, and Mary E.D. Flowers 5 Long‐term follow‐up calendar 33 André Tichelli, Bipin N. Savani, Shahrukh K. Hashmi, Navneet S. Majhail, and Alicia Rovó 6 Late effects post‐allogeneic hematopoietic stem cell transplantation 38 Shahrukh K. Hashmi and Yoshihiro Inamoto 7 Late effects post‐autologous hematopoietic stem cell transplantation 47 Rajshekhar Chakraborty and Betty K. Hamilton 8 Long‐term follow‐up of children 58 Paul A. Carpenter 9 Graft‐versus‐host disease and late effects after hematopoietic stem cell transplantation 73 David Michonneau, Aurélien Sutra del Galy, and Gérard Socié 10 Screening and prevention guidelines for hematopoietic cell transplant survivors 80 Neel S. Bhatt, J. Douglas Rizzo, and Navneet S. Majhail 11 Biology of survivorship after blood or marrow transplantation 92 Smita Bhatia Section 2 Specific late effects 101 12 Second malignancies 103 Aurélien Sutra del Galy, David Michonneau, and Gérard Socié 13 Anti‐infective prophylaxis, immunization and prevention of late infectious complications 112 Per Ljungman 14 Seasonal respiratory viral infections 119 Nosha Farhadfar, Zeina Al‐Mansour, and John R. Wingard 15 Monitoring and management of hepatitis B, C, and HIV infection before and after transplantation 132 Enric Carreras and Montserrat Rovira 16 Skin chronic GVHD 140 Attilio Olivieri, Anna Campanati, Gaia Goteri, and Andrea Bacigalupo 17 Ocular complications 166 Alicia Rovó, André Tichelli, and Yoshihiro Inamoto 18 Management of oral and dental complications 176 Hildegard T. Greinix 19 Thyroid disease: monitoring and management guidelines 183 Juliana Matthews, Leslee Matheny, and Shubhuda Jagasia 20 Pretransplant considerations in gender, reproductive, and sexual health 189 Dana Shanis, Jeanne Murphy, Kate Debiec, Betty K. Hamilton, Shawna Boyle, and Pamela Stratton 21 Posttransplant Considerations in Gender, Reproductive, and Sexual Health 198 Jeanne Murphy, Dana Shanis, Kate Debiec, Betty K. Hamilton, Shawna Boyle, and Pamela Stratton 22 Fertility issues, fertility preservation, and pregnancy outcome in long‐term survivors 211 Alicia Rovó, Alison W. Loren, André Tichelli, and Nina Salooja 23 Sexual Dysfunction in Long‐Term Survivors 221 Rebecca L. Hunter, Sarah Thilges, Janna Gordon, Kristy Luke, Karla Cavazos, Emilee Moeke, Colleen Bruen, and Sunita Nathan 24 Late non‐infectious pulmonary complications 231 Ayman O. Soubani 25 Cardiac and arterial complications 241 Alicia Rovó and André Tichelli 26 Cardiovascular risk factors 251 Kimberley Doucette and Minoo Battiwalla 27 Gastrointestinal complications 260 Sumona Bhattacharya, Steven Pavletic, and Theo Heller 28 Hepatic Complications 271 Christy Ann L. Gilman, Christopher Koh, Steven Pavletic, and Theo Heller 29 Renal complications 278 Insara Jaffer Sathick and Sangeeta Hingorani 30 Posttransplantation bone disease: prevalence, surveillance, prevention, and management 287 Christine N. Duncan 31 Late neurologic complications 300 Enrico Maffini 32 Neurocognitive dysfunction 312 David Buchbinder and Angela Scherwath 33 Psychological Distress 330 Anna Barata, Aasha I. Hoogland, and Heather S. L. Jim 34 Evaluation and management of fatigue in survivors of allogeneic hematopoietic stem cell transplantation 337 Sandra A. Mitchell 35 Social Issues 349 Sanghee Hong and Navneet S. Majhail 36 Health‐related quality of life in adult and pediatric survivors 355 Sandra A. Mitchell, Lori Wiener, Jenny Hoag, Abigail Fry, and Margaret F. Bevans Section 3 Supportive care and patients reported outcomes 381 37 Immunosuppressive agents and monitoring in long‐term survivors 383 Kathryn A. Culos and Katie S. Gatwood 38 Nutritional support and nutritional supplementation 393 Shigeo Fuji 39 Daily routines and healthy lifestyle guidelines 397 Melissa Logue 40 Prevalent psychosocial adjustment issues and solutions: lifestyle and social challenges 402 Katrina M. Stokes 41 Complementary and alternative medicine in HSCT 406 Ibrahim N. Muhsen, Bipin N. Savani,, and Shahrukh K. Hashmi 42 Impact of adherence in outcome of long‐term survivors 413 Corien Eeltink and Annika Kisch 43 Prominent role of allied health professionals 418 Catherine E. Lucid 44 Patient reported outcomes 420 Hélène Schoemans 45 Caregivers of long‐term survivors 428 Angela Moreschi Woods 46 Patient’s perspective: memoir of a recovered lymphomaniac 434 Michael Brown Appendix 1 Commonly used transplant‐related medications in long‐term survivors 442 Kathryn A. Culos and Katie S. Gatwood Appendix 2 The eGVHD App 445 Hélène Schoemans Index 448

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, Blood and Marrow Transplantation Long-Term Management: Survivorship after Transplant, provides up-to-date information about diagnosis, screening, treatment, and long-term surveillance of long-term survivors after HCT.

"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 and now 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"-- Provided by publisher