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.

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

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