National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report
Open accessAbstract
In 2015, the National Institutes of Health convened six working groups to address the research needs and best practices for late effects of hematopoietic stem cell transplantation survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to (1) summarize the current literature describing patient-centered outcomes in survivors, including the various dimensions of health-related quality of life affected by HCT, and describe interventions tested to improve these outcomes; (2) highlight areas with sufficient evidence allowing for integration into standard practice; (3) address methodological issues that restrict progress in this field; (4) identify major gaps to guide future research; and (5) specify priority research recommendations. Patient-centered outcomes were summarized within physical, psychological, social, and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of patient-centered outcome measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included integration of annual screening of patient-centered outcomes, use of evidence-based practice guidelines, and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included the following: (1) design and test risk-targeted interventions with dose-intensity modulation matching the needs of HCT survivors with priority domains, including sexual dysfunction, fatigue, sleep disruption, nonadherence to medications and recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplantation centers; (2) design a consensus-based methodologic framework for outcomes evaluation; and (3) evaluate and compare existing practices for integrating patient-centered outcome screening and interventions across HCT survivorship programs.
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Sleep disturbances are prevalent among patients undergoing stem cell and BMT and appear to be most problematic and distressing during the inpatient stage of treatment.
“Sleep disturbances are prevalent among patients undergoing stem cell and BMT and appear to be most problematic and distressing during the inpatient stage of treatment.2”
From Individualized, Single Session Yoga Therapy to Reduce Physical and Emotional Symptoms in Hospitalized Hematological Cancer Patients. (2019) · cites this paper as [2]
The Findings > Physical > Sleep section reports sleep problems in 14%–51% of HCT survivors, supporting that they are prevalent. It does not say sleep problems are most problematic or distressing during inpatient treatment; its figures concern survivors, not a comparison of treatment stages. Page numbers are unavailable in our copy. (LLM, conf=0.86)
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Prevalence and predictors of sexual dysfunction in long-term survivors of marrow transplantation.
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“Studies examining micro-level cognitive domains in pediatric cohorts reveal subtle impairment in complex psychomotor skills, visual-motor integration, attention and concentration, visual-spatial processing and memory, executive functioning, and nonverbal reasoning (82, 86, 87).”
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“Few studies have examined the psychosexual impact of reproductive risks, infertility and sexuality in pediatric or adult survivors of HCT (54, 55).”
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Sexual functioning in patients undergoing bone marrow transplantation: a longitudinal study
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“Risk factors include pre-transplant depression, female gender (29, 50, 53), older age, active cGVHD and in men, the use of TBI (53).”
BackgroundCognitive and adaptive behavior 1 and 3 years following bone marrow transplantation
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“Most studies report small to no declines in global IQ and academic achievement among pediatric survivors (66, 79, 80), although subsets of children are at risk for significant decrements in IQ (81, 82) when assessed up to five years post-transplant (83).”
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“Few studies have examined the psychosexual impact of reproductive risks, infertility and sexuality in pediatric or adult survivors of HCT (54, 55).”
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“Patients report the lowest levels of physical functioning during hospitalization and scores generally improve to pre-transplant levels within a year post-transplant (22, 56, 57).”
BackgroundPsychological distress in long‐term survivors of hematopoietic stem cell transplantation
Rusiewicz, A., DuHamel, K. N., Burkhalter, J. E., Ostroff, J. S., Winkel, G. H., Scigliano, E., Papadopoulos, E. B., Moskowitz, C. H., & Redd, W. H. (2007) · Psycho-Oncology · doi:10.1002/pon.1221 · Cited by 87 · cited 3× · see citing works
“Clinically meaningful distress (particularly difficulty living with uncertainty, fear of recurrence, loneliness, memory concern, and somatic preoccupation), is elevated in 22–43% of long-term survivors (61, 62).”
BackgroundInformal Caregivers of Hematopoietic Cell Transplant Patients
Gemmill, R., Cooke, L., Williams, A. C., & GRANT, M. M. (2011) · Cancer Nursing · doi:10.1097/ncc.0b013e31820a592d · Cited by 86 · see citing works
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Patient-Centered Outcomes of Medication Adherence Interventions: Systematic Review and Meta-Analysis
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“Examples of such outcomes are adherence to medication (5) and health behaviors such as tobacco use or physical activity (6), which may affect treatment success as well as improve HRQOL.”
BackgroundProspective predictors of return to work in the 5 years after hematopoietic cell transplantation
Kirchhoff, A. C., Leisenring, W. M., & Syrjala, K. L. (2009) · Journal of Cancer Survivorship · doi:10.1007/s11764-009-0105-2 · Cited by 82 · see citing works
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Cognitive and Academic Consequences of Stem-Cell Transplantation in Children
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“Like in adults, greater risk is associated with TBI or cranial radiation, intrathecal methotrexate, cGVHD and low socio-economic status, but also conferred by age less than five when transplanted, female gender, and a cognitive decline in the first year post-transplant (84, 85).”
BackgroundRisk factors for depression and fatigue among survivors of hematopoietic cell transplantation
Jim, H., Sutton, S. K., Jacobsen, P. B., Martin, P. J., Flowers, M. E. D., & Lee, S. J. (2016) · Cancer · doi:10.1002/cncr.29877 · Cited by 81 · cited 3× · see citing works
“, relapse) associated with depression in HCT survivors are fixed (10, 33) while others such as lower levels of pretransplant social support or current chronic pain or active cGVHD may be modifiable (22, 33).”
BackgroundSelf-citationFinancial Hardship and Patient-Reported Outcomes after Hematopoietic Cell Transplantation
Abel, G. A., Albelda, R. P., Khera, N., Hahn, T., Coronado, D. S., Odejide, O. O., Bona, K. O., Tucker‐Seeley, R. D., & Soiffer, R. J. (2016) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2016.05.008 · Cited by 81 · see citing works
The long-term psychosocial effects of haematopoetic stem cell transplantation
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Psychological Issues of Stem Cell Transplant
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“There is limited evidence that social support influences survival among patients following HCT (99).”
BackgroundSexual health in hematopoietic stem cell transplant recipients
Li, Z., Mewawalla, P., Stratton, P., Yong, A. S. M., Shaw, B. E., Hashmi, S. K., Jagasia, M., Mohty, M., Majhail, N. S., Savani, B. N., et al. (2015) · Cancer · doi:10.1002/cncr.29675 · Cited by 75 · cited 1× · see citing works
“Sexual Function—The few longitudinal studies of sexual health after HCT consistently indicate that sexual dysfunction and sexual dissatisfaction are common (49).”
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“Caregivers who are female, working fulltime, and those who experienced more distress pre-transplant, are more likely to report problems with relationship adjustment and higher levels of distress (97, 113, 114).”
BackgroundSelf-citationKupst, M. J., Penati, B., Debban, B., Camitta, B. M., Pietryga, D. W., Margolis, D. M., Murray, K., & Casper, J. T. (2002) · Bone Marrow Transplantation · doi:10.1038/sj.bmt.1703683 · Cited by 73 · cited 1× · see citing works
“Most studies report small to no declines in global IQ and academic achievement among pediatric survivors (66, 79, 80), although subsets of children are at risk for significant decrements in IQ (81, 82) when assessed up to five years post-transplant (83).”
BackgroundGurney, J. G., Ness, K. K., Rosenthal, J., Forman, S. J., Bhatia, S., & Baker, K. S. (2006) · Cancer · doi:10.1002/cncr.21752 · Cited by 72 · cited 1× · see citing works
“Adult survivors of childhood HCT report significantly worse bodily pain than healthy matched controls, with 21% reporting persistent pain (38, 42).”
BackgroundBishop, M. M., Lee, S. J., Beaumont, J. L., Andrykowski, M. A., Rizzo, J. D., Sobocinski, K. A., & Wingard, J. R. (2009) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2009.09.015 · Cited by 72 · see citing works
Self-citationMichel, G., Bordigoni, P., Simeoni, M., Curtillet, C., Hoxha, S., Robitail, S., Thuret, I., Pall-Kondolff, S., Chambost, H., Orbicini, D., et al. (2007) · Bone Marrow Transplantation · doi:10.1038/sj.bmt.1705821 · Cited by 71 · cited 1× · see citing works
“Childhood leukemia survivors who are post-transplant have not differed from those treated with chemotherapy alone (60).”
BackgroundBona, K. O., London, W. B., Guo, D., Abel, G. A., Lehmann, L., & Wolfe, J. (2014) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2014.10.016 · Cited by 71 · see citing works
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“cGVHD, fatigue, depression) and social or educational status of the parents (88, 89).”
BackgroundWillard, V. W., Leung, W. H., Huang, Q., Zhang, H., & Phipps, S. (2014) · Journal of Clinical Oncology · doi:10.1200/jco.2014.56.2223 · Cited by 67 · cited 1× · see citing works
“Like in adults, greater risk is associated with TBI or cranial radiation, intrathecal methotrexate, cGVHD and low socio-economic status, but also conferred by age less than five when transplanted, female gender, and a cognitive decline in the first year post-transplant (84, 85).”
BackgroundCaregiver Quality of Life After Autologous Bone Marrow Transplantation
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The quality of life of adult survivors of childhood hematopoietic cell transplant
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“Similarly, adult survivors of childhood HCT assessed a mean of 16 years post-transplant, report more physical limitations than age and sex-matched controls (42).”
BackgroundSelf-citationPatients’ psychosocial concerns following stem cell transplantation
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“Fatigue—Fatigue is among the most common concerns of HCT survivors (7).”
BackgroundSelf-citationKhera, N., Chow, E. J., Leisenring, W. M., Syrjala, K. L., Baker, K. S., Flowers, M. E. D., Martin, P. J., & Lee, S. J. (2010) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2010.10.023 · Cited by 63 · see citing works
Self-citationCognitive, Behavioral, and Social Outcome in Survivors of Childhood Stem Cell Transplantation
Simms, S., Kazak, A. E., Golomb, V. A., Goldwein, J. L., & Bunin, N. (2002) · The American journal of pediatric hematology/oncology · doi:10.1097/00043426-200202000-00011 · Cited by 62 · cited 1× · see citing works
“Most studies report small to no declines in global IQ and academic achievement among pediatric survivors (66, 79, 80), although subsets of children are at risk for significant decrements in IQ (81, 82) when assessed up to five years post-transplant (83).”
BackgroundMorrison, E. J. P., Ehlers, S. L., Bronars, C. A., Patten, C. A., Brockman, T. A., Cerhan, J. R., Hogan, W. J., Hashmi, S. K., & Gastineau, D. A. (2016) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2016.05.013 · Cited by 61 · see citing works
Hematopoietic Stem Cell Donation in Children
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Self-citationNeuromuscular complications of bone marrow transplantation
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“Studies examining micro-level cognitive domains in pediatric cohorts reveal subtle impairment in complex psychomotor skills, visual-motor integration, attention and concentration, visual-spatial processing and memory, executive functioning, and nonverbal reasoning (82, 86, 87).”
BackgroundMajhail, N. S., Rizzo, J. D., Hahn, T., Lee, S. J., McCarthy, P. L., Ammi, M., Denzen, E. M., Drexler, R. J., Flesch, S., James, H., et al. (2012) · Bone Marrow Transplantation · doi:10.1038/bmt.2012.248 · Cited by 58 · see citing works
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“Most studies report small to no declines in global IQ and academic achievement among pediatric survivors (66, 79, 80), although subsets of children are at risk for significant decrements in IQ (81, 82) when assessed up to five years post-transplant (83).”
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“Neurocognitive Functioning—Cognitive alterations detected with neuropsychological testing have been reported in 40–60% of adult survivors while a recent meta-analysis reports no significant changes in cognitive functioning from pre- to post-transplant (58, 59, 75).”
BackgroundSelf-citationKent, E. E., Mitchell, S. A., Castro, K. M., DeWalt, D. A., Kaluzny, A. D., Hautala, J. A., Grad, O., Ballard, R., McCaskill-Stevens, W. J., Kramer, B. S., et al. (2015) · Journal of Clinical Oncology · doi:10.1200/jco.2014.60.6210 · Cited by 55 · see citing works
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“Physical symptoms are a major contributor to impairments in HRQOL, including physical and psychological function in HCT survivors (23, 31).”
BackgroundBraamse, A. M. J., van Meijel, B., Visser, O. J., Boenink, A. D., Cuijpers, P. J., Eeltink, C., Hoogendoorn, A. W., Kooy, M. V. M., van Oppen, P., Huijgens, P. C., et al. (2015) · Annals of Hematology · doi:10.1007/s00277-015-2509-6 · Cited by 55 · see citing works
Improving an electronic system for measuring PROs in routine oncology practice
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“Preliminary evidence suggests that risk factors for sleep problems include older age, female gender, divorce, unemployment, depression, distress and receipt of an autologous transplant (46).”
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“Identified risk factors for cognitive dysfunction include pretransplant memory problems, the use of total body irradiation (TBI), history of cranial irradiation, intrathecal chemotherapy, cGVHD, immunosuppressive therapy, a history of delirium during the acute transplant phase and lower socioeconomic status (59, 75–78…”
BackgroundInfluentialSyrjala, K. L., Stover, A. C., Yi, J. C., Artherholt, S. B., Romano, E. M., Schoch, G. H., Stewart, S. K., & Flowers, M. E. D. (2011) · Journal of Cancer Survivorship · doi:10.1007/s11764-011-0182-x · Cited by 50 · see citing works
Self-citationShaw, B. E., Lee, S. J., Horowitz, M. M., Wood, W. A., Rizzo, J. D., & Flynn, K. E. (2016) · Bone Marrow Transplantation · doi:10.1038/bmt.2016.113 · Cited by 48 · see citing works
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“Prevalent symptoms reported include pain (particularly musculoskeletal), lack of energy/fatigue, and difficulty with sleep (23).”
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Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation
Bevans, M. F., Ross, A. C., Wehrlen, L., Klagholz, S. D., Yang, L., Childs, R. W., Flynn, S. L., Remaley, A. T., Krumlauf, M., Reger, R. N., et al. (2016) · Stress · doi:10.3109/10253890.2016.1146670 · Cited by 45 · see citing works
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Parental stress and perceived vulnerability at 5 and 10 years after pediatric SCT
Vrijmoet‐Wiersma, C. M. J., Egeler, R. M., Koopman, H. M., Bresters, D., Norberg, A. L., & Grootenhuis, M. A. (2009) · Bone Marrow Transplantation · doi:10.1038/bmt.2009.309 · Cited by 43 · see citing works
The psychosocial impact of haematopoietic SCT on sibling donors
Pillay, B., Lee, S. J., Katona, L., Bono, S. D., Warren, N., Fletcher, J. M., & Burney, S. (2012) · Bone Marrow Transplantation · doi:10.1038/bmt.2012.22 · Cited by 42 · see citing works
Self-citationQuality of life and health in children following allogeneic SCT
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Barriers to mental health service use among hematopoietic SCT survivors
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“As with fatigue, sleep difficulties in long-term pediatric survivors has not been much studied (45).”
BackgroundSurvival in overweight and underweight children undergoing hematopoietic stem cell transplantation
White, M., Murphy‐Alford, A. J., Hallahan, A. R., Ware, R. S., Fraser, C., & Davies, P. S. W. (2012) · European Journal of Clinical Nutrition · doi:10.1038/ejcn.2012.109 · Cited by 40 · see citing works
Parental stress before, during, and after pediatric stem cell transplantation: a review article
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Childhood to adult transition and long-term follow-up after blood and marrow transplantation
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Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors
Switzer, G. E., Bruce, J. G., Kiefer, D. M., Kobusingye, H. K., Drexler, R. J., Besser, R. M., Confer, D. L., Horowitz, M. M., King, R., Shaw, B. E., et al. (2016) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2016.07.009 · Cited by 38 · see citing works
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Clinical predictors of cognitive function in adults treated with hematopoietic cell transplantation
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“Length of hospital stay, perhaps reflective of greater complications, seems to confer a risk for sustained cognitive deficits after HCT (78).”
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“Advances in conditioning regimens, supportive care practices, and expanded donor sources and cellular therapies have led to expanded access and indications, as well as improved survival rates for HCT recipients (1).”
BackgroundClarke, S.-A., Skinner, R., Guest, J., Darbyshire, P., Cooper, J., Vora, A. J., Urquhart, T., Jenney, M. E. M., Powell, J., & Eiser, C. (2010) · Child Care Health and Development · doi:10.1111/j.1365-2214.2010.01182.x · Cited by 37 · see citing works
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Importance of Meaning-Making for Patients Undergoing Hematopoietic Stem Cell Transplantation
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“Social support—HCT recipients often encounter relationship, social role and communication changes following HCT (95).”
BackgroundHarris, B. A., Berger, A. M., Mitchell, S. A., Steinberg, S. M., Baker, K. L., Handel, D. L., Bolle, J. L., Bush, E. G., Avila, D. N., & Pavletic, S. Z. (2010) · PubMed · Cited by 35 · see citing works
Health-Related Quality of Life of Hematopoietic Stem Cell Transplant Childhood Survivors
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“In adolescent CCS, rate of alcohol use is comparable to that of healthy siblings and the general population (40, 142), and the rate of use for marijuana, heroin, cocaine, and methamphetamines is approximately 10% (40).”
BackgroundFinancial Burden In Recipients Of Allogeneic Hematopoietic Cell Transplantation
Khera, N., Chang, Y., Hashmi, S. K., Slack, J. L., Fauble, V. D. S., Beebe, T. J., Roy, V., Sproat, L., Leis, J. F., Noël, P., et al. (2013) · Blood · doi:10.1182/blood.v122.21.721.721 · Cited by 34 · see citing works
Changes in sleep and fatigue in newly treated pediatric oncology patients
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“However, reduced sleep quality and quantity contribute to poor HRQOL in pediatric oncology patients through their adulthood (47, 48).”
BackgroundMental status changes after hematopoietic stem cell transplantation
Chang, G., Meadows, M., Orav, E. J., & Antin, J. H. (2009) · Cancer · doi:10.1002/cncr.24496 · Cited by 31 · cited 1× · see citing works
“Most adult survivors recover cognitive function within one year but mild impairments remain evident 5 years post-transplant for some survivors (59, 75, 76).”
BackgroundChild and parental adaptation to pediatric stem cell transplantation
Vrijmoet‐Wiersma, C. M. J., Kolk, A. M. M., Grootenhuis, M. A., Spek, E. M., van Klink, J. M. M., Egeler, R. M., Bredius, R. G. M., & Koopman, H. M. (2008) · Supportive Care in Cancer · doi:10.1007/s00520-008-0544-8 · Cited by 31 · see citing works
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Post‐traumatic growth in survivors of allogeneic hematopoietic stem cell transplantation
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“Social support is impacted by fatigue as well as separation from peers and age appropriate activities (45, 100).”
BackgroundSyrjala, K. L., Yi, J. C., Artherholt, S. B., Stover, A. C., & Abrams, J. R. (2010) · Journal of Cancer Survivorship · doi:10.1007/s11764-010-0126-x · Cited by 26 · cited 1× · see citing works
“Although pain syndromes are not well described, evidence suggests that most pain is correlated with active cGVHD, which is known to be associated with several chronic pain syndromes (24, 37–40) as well as avascular necrosis, arthralgias, myalgias, and muscle cramps (13, 41).”
BackgroundSelf-citationSpirituality and the recovery of quality of life following hematopoietic stem cell transplantation.
Leeson, L., Nelson, A. M., Rathouz, P. J., Juckett, M., Coe, C. L., Caes, E. W., & Costanzo, E. S. (2014) · Health Psychology · doi:10.1037/hea0000196 · Cited by 26 · see citing works
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Social support and quality of life of patients prior to stem cell or bone marrow transplantation
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Mood disturbance in the cancer setting: effects of gender and patient/spouse role.
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Physical activity and screen‐time of childhood haematopoietic stem cell transplant survivors
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`A life on hold': adolescents' experiences of stem cell transplantation in a long-term perspective
Forinder, U., & Posse, E. (2008) · Journal of Child Health Care · doi:10.1177/1367493508096205 · Cited by 21 · see citing works
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Sun Exposure and Protection Habits in Pediatric Patients with a History of Malignancy
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Patient Centeredness and Engagement in Quality-of-Care Oncology Research
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“Most studies report small to no declines in global IQ and academic achievement among pediatric survivors (66, 79, 80), although subsets of children are at risk for significant decrements in IQ (81, 82) when assessed up to five years post-transplant (83).”
BackgroundSelf-citationScolarité et devenir social après un cancer dans l’enfance
Bonneau, J., Dugas, K., Louis, A., Morel, L., Toughza, J., & Frappaz, D. (2015) · Bulletin du Cancer · doi:10.1016/j.bulcan.2015.03.010 · Cited by 8 · cited 1× · see citing works
“cGVHD, fatigue, depression) and social or educational status of the parents (88, 89).”
BackgroundExperience of severe fatigue in long-term survivors of stem cell transplantation
Gielissen, M. F. M., Schattenberg, A. V. M., Verhagen, C. A. H. H. V. M., Rinkes, M. J., Bremmers, M. E. J., & Bleijenberg, G. (2007) · Bone Marrow Transplantation · doi:10.1038/sj.bmt.1705624 · Cited by 1 · cited 1× · see citing works
“One study found that 35% of allogeneic and autologous patients were experiencing severe fatigue at one year post-transplant (44).”
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Nekhlyudov, L., Mollica, M. A., Jacobsen, P. B., Mayer, D. K., Shulman, L. N., & Geiger, A. M. (2019) · JNCI: Journal of the National Cancer Institute · doi:10.1093/jnci/djz089 · Cited by 416 · see citing works
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Self-citationLong-term complications after hematopoietic cell transplantation
Majhail, N. S. (2017) · Hematology/Oncology and Stem Cell Therapy · doi:10.1016/j.hemonc.2017.05.009 · Cited by 202 · see citing works
Late effects of blood and marrow transplantation
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What do transplant physicians think about palliative care? A national survey study
El-Jawahri, A. R., LeBlanc, T. W., Burns, L. J., Denzen, E. M., Meyer, C. L., Mau, L., Roeland, E. J., Wood, W. A., & Petersdorf, E. W. (2018) · Cancer · doi:10.1002/cncr.31709 · Cited by 76 · see citing works
“Ultimately, HSCT recipients face complex physical and psychological symptoms that negatively affect their quality of life throughout their difficult and unpredictable illness course.(1-4,6,8-13) Early integration of specialty palliative care (PC) concurrently with oncology care for patients with advanced cancer has be…”
BackgroundInfluentialSelf-citationEl‐Jawahri, A., Jacobs, J. M., Nelson, A. M., Traeger, L., Greer, J. A., Nicholson, S., Waldman, L. P., Fenech, A. L., Jagielo, A. D., D’Alotto, J., et al. (2020) · Cancer · doi:10.1002/cncr.32680 · Cited by 67 · see citing works
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“Acknowledging the physical and psychological needs for HCT survivors and seeking help for their physical and mental health needs, especially during the pandemic phase, is of utmost importance [68].”
Battiwalla, M., Hashmi, S. K., Majhail, N. S., Pavletic, S. Z., Savani, B. N., & Shelburne, N. (2016) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2016.10.020 · Cited by 62 · see citing works
Long-Term Survivorship after Hematopoietic Cell Transplantation: Roadmap for Research and Care
Battiwalla, M., Tichelli, A., & Majhail, N. S. (2016) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2016.11.004 · Cited by 57 · see citing works
Tichelli, A., Beohou, E., Labopin, M., Socié, G., Rovó, A., Badoglio, M., van Biezen, A., Bader, P., Duarte, R. F., Basak, G. W., et al. (2018) · JAMA Oncology · doi:10.1001/jamaoncol.2018.4934 · Cited by 57 · see citing works
Leppla, L., Mielke, J., Kunze, M., Mauthner, O. E., Teynor, A., Valenta, S., Vanhoof, J. M. M., Dobbels, F., Berben, L., Zeiser, R., et al. (2020) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2020.101723 · Cited by 56 · see citing works
Maillet, D., Belin, C., Moroni, C., Cuzzubbo, S., Ursu, R., Sirven-Villaros, L., Blasi, R. D., Thiéblemont, C., & Carpentier, A. F. (2021) · Neuro-Oncology · doi:10.1093/neuonc/noab077 · Cited by 50 · see citing works
El-Jawahri, A. R., Fishman, S. R., Vanderklish, J., Dizon, D. S., Pensak, N. A., Traeger, L. N., Greer, J. A., Park, E. R., Markovitz, N. H., Waldman, L. P., et al. (2018) · Cancer · doi:10.1002/cncr.31333 · Cited by 46 · see citing works
“Median time from transplant to enrollment (range), mo 29 (3-173)”
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ESTRO ACROP and SIOPE recommendations for myeloablative Total Body Irradiation in children
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“Childhood HSCT survivors carry a great risk burden of subsequent morbidity, which calls for life-long monitoring of this population [2,5,70,176,177].”
BackgroundSexual Functioning in Long-Term Survivors of Hematopoietic Cell Transplantation
Syrjala, K. L., Schoemans, H. M., Yi, J. C., Langer, S. L., Mukherjee, A., Onstad, L., & Lee, S. J. (2020) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2020.09.027 · Cited by 38 · see citing works
“Homemaker/retired 545 (31) 119 (47) 185 (27) 114 (36) 127 (26) Unemployed/disabled 292 (16) 60 (24) 102 (15) 65 (20) 65 (13) Missing 13 (1) 3 (1) 6 (1) 4 (1) 0”
InfluentialSelf-citationShah, G. L., Majhail, N. S., Khera, N., & Giralt, S. A. (2018) · Current Hematologic Malignancy Reports · doi:10.1007/s11899-018-0444-z · Cited by 36 · see citing works
Hoogland, A. I., Nelson, A. M., Gonzalez, B. D., Small, B. J., Breen, E. C., Sutton, S. K., Syrjala, K. L., Bower, J. E., Pidala, J., Booth‐Jones, M., et al. (2019) · Brain Behavior and Immunity · doi:10.1016/j.bbi.2019.04.008 · Cited by 36 · see citing works
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“Transplant patients, caregivers and health care providers consistently identify preservation of physical function as an important long-term goal following transplant [9, 10].”
BackgroundInfluentialSelf-citationBurns, L. J., Abetti, B., Arnold, S. D., Bender, J., Doughtie, S., El-Jawahiri, A., Gee, G., Hahn, T., Horowitz, M. M., Johnson, S., et al. (2018) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2018.01.029 · Cited by 33 · see citing works
Self-citationYen, H., Eissa, H., Bhatt, N. S., Huang, S., Ehrhardt, M. J., Bhakta, N. H., Ness, K. K., Krull, K. R., Srivastava, D. K., Robison, L. L., et al. (2020) · Blood · doi:10.1182/blood.2019003858 · Cited by 31 · see citing works
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Bhatt, N. S., Brazauskas, R., Tecca, H. R., Carreras, J., Burns, L. J., Phelan, R., Salit, R. B., Syrjala, K. L., Talano, J., & Shaw, B. E. (2018) · Cancer · doi:10.1002/cncr.31781 · Cited by 27 · see citing works
“In addition to increased risks for life-threatening late effects, such as subsequent neoplasms, immune dysregulation, infections, and cardiovascular sequelae, alloHCT also has a significant impact on morbidities, including psychological (emotional distress, depression, anxiety, post-traumatic stress, cognitive dysfunc…”
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“A recent review highlighted several correlates of social adjustment in HCT survivors [2], including age [14–16], sex”
BackgroundSelf-citationAdvancing Palliative Care Integration in Hematology: Building Upon Existing Evidence
Robbins-Welty, G. A., Webb, J. A., Shalev, D., El-Jawahri, A. R., Jackson, V. A., Mitchell, C., & LeBlanc, T. W. (2023) · Current Treatment Options in Oncology · doi:10.1007/s11864-023-01084-1 · Cited by 24 · see citing works
Self-citationPalliative care during and following allogeneic hematopoietic stem cell transplantation
Mitchell, S. A. (2018) · Current Opinion in Supportive and Palliative Care · doi:10.1097/spc.0000000000000327 · Cited by 23 · see citing works
Eissa, H., Thakar, M. S., Shah, A. J., Logan, B. R., Griffith, L. M., Dong, H., Parrott, R. E., O’Reilly, R. J., Dara, J. S., Kapoor, N., et al. (2023) · Journal of Allergy and Clinical Immunology · doi:10.1016/j.jaci.2023.09.027 · Cited by 22 · see citing works
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Driving Distance and Patient-Reported Outcomes in Hematopoietic Cell Transplantation Survivors
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“Risk factors for fatigue include female gender, cGVHD, younger age, and chronic pain [12, 268].”
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Self-citationChronic Health Conditions and Longitudinal Employment in Survivors of Childhood Cancer
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“Furthermore, cGvHD was a risk factor for fatigue and sexual dysfunction [29].”
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“The most common include physical (fatigue, pain, sleep disturbance), psychological (anxiety, depression), and social (loneliness, negative self-image, loss of control, and privacy) sequelae.(2) While rates of emotional distress and physical limitations are acutely elevated in the 100 days following treatment,(3,4) the…”
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“…and characterized by numerous symptoms, including depression, anxiety, insomnia, fatigue, delirium, and post-traumatic stress symptoms, each associated with worse health-related outcomes, including diminished quality of life (QOL) [4, 5] and functioning, and increased mortality [6 – 9].”
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“Psychological distress, including anxiety and depression has also been strongly associated with reduced QoL following alloHSCT.(4,7,11,17) Other factors that have been reported to adversely impact on survivors QoL include greater symptom burden, reduced-intensity chemotherapy (RIC), shorter period since allo-HSCT, fem…”
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Sexual health in patients with hematological malignancies: a neglected issue
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“Indeed, recent recommendations by the Patient-Centered Outcomes Working Group of the US NIH identified the lack of research on sexual function in patients who received hematopoietic stem cell transplantation (HSCT) as a significant research gap [3].”
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“Long-term survivorship care including quality of life (QOL) has been increasingly emphasized in patients after alloHCT [3].”
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“The priority domains of research are sexual dysfunction, fatigue, sleep disruption, nonadherence, health behaviors, and psychological dysfunction.(23) Other working groups published reviews presenting the current knowledge and unmet needs in the field ofHCT for inherited bonemarrow failure syndromes,(24) for severe co…”
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“Rep. 2023, 13 1103 life (HRQoL) [28,29], the management of therapy-related side effects [30,31], the satisfaction with care received [32,33], and use of the healthcare system [16,34].”
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“The survivorship care plan integrates a routine screening of sexual function, screening for survivors who require help, and offering those in need evidence-based sexual care with multimodal interventions to address the physical and psychosocial issues associated with their sexual problems (Bevans et al., 2017).”
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“Median age at transplantation (range) (y) 7 (2-18) Age groups (y) 2-4 24 (32) 5-7 20 (27) 8-12 18 (24)”
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Self-citationA Digital Intervention to Address Sexual Health in Hematopoietic Stem Cell Transplant Survivors
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“However, it is also an intense process during children ’ s formative years and negatively impacts their physical, emotional, and socio-environmental domains of quality of life (QOL) [2].”
Assessing long-term effects after stem cell transplantation: design of the MOSA study
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“Risk factors for poor health-related quality of life include younger age, depression, low education, low social support, physical symptoms, and active chronic GVHD (Bevans et al., 2017).”
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Inflammatory cytokines and depression symptoms following hematopoietic cell transplantation
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Sexual Health in Hematopoietic Stem Cell Transplantation Survivors
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Self-citation
- Authors
- Bevans, M., El-Jawahri, A., Tierney, D. K., Wiener, L., Wood, W. A., Hoodin, F., Kent, E. E., Jacobsen, P. B., Lee, S. J., Hsieh, M. M., Denzen, E. M., & Syrjala, K. L.
- Affiliations
- National Institutes of Health (US)
- Massachusetts General Hospital (US)
- Stanford University (US)
- National Cancer Institute (US)
- University of North Carolina System (US)
- Eastern Michigan University (US)
- Moffitt Cancer Center (US)
- Fred Hutch Cancer Center (US)
- National Marrow Donor Program (US)
- Corresponding author
- Bevans, Margaret
- ORCID
- Venue
- Biology of Blood and Marrow Transplantation
- Publisher
- Elsevier BV
- Published
- 2017-04
- Volume
- 23
- Issue
- 4
- Pages
- 538-551
- ISSN
- 1083-8791 (ISSN-L)
- PMC
- PMC5346334
- OpenAlex
- W2485271916
- Cited by
- 166
- References
- 197
- Citations by year
- 2026: 10 · 2025: 17 · 2024: 22 · 2023: 21 · 2022: 16 · 2021: 29 · 2020: 15 · 2019: 9 · 2018: 16 · 2017: 7 · 2016: 2
- FWCI
- 1.14
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Transplantation and Cellular Therapy (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Heart, Lung, and Blood Institute
- National Cancer Institute
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Hematology › Hematopoietic Stem Cell Transplantation
- Keywords
- hematopoietic stem cell transplantation, late effects, health-related quality of life, patient-centered outcomes, survivorship care, sexual dysfunction, fatigue, sleep disruption, medication non-adherence, health behavior, psychological dysfunction, research recommendations
- MeSH terms
- Humans, National Institutes of Health (U.S.), Quality of Life, Research Design, United States, Outcome Assessment, Health Care, Practice Guidelines as Topic, Survivors, Hematopoietic Stem Cell Transplantation, Research Report
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