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Fatigue predicts impaired social adjustment in survivors of allogeneic hematopoietic cell transplantation (HCT)

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Abstract

Purpose

The aim of this study is to examine social adjustment to illness and to identify factors related to social adjustment in allogeneic hematopoietic cell transplantation (HCT) survivors.

Methods

Cross-sectional data were drawn from a longitudinal study of patients ≥ 3 years after their first HCT. The five subscales of the Psychosocial Adjustment to Illness Scale (PAIS) that reflect social adjustment, specifically vocational environment (VE); domestic environment (DE); sexual relationships (SEX); extended family relationships (ER); and social environment (SE) were examined in this analysis. Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) measured cancer-related fatigue.

Results

Subjects (N = 171) were a median of 5.19 years from HCT (range 3–16). The most impaired dimension of social adjustment was ER with 38% of participants reaching clinically relevant (score ≥ 62) levels of social maladjustment. Unmarried and unemployed participants had lower levels of social adjustment in VE (p < .001 and p < .001, respectively) and DE (p = .004 and p = .006, respectively). Survivors with some college had poorer SEX adjustment than those with less or more education (p < .005). Hispanics reported lower adjustment with respect to ER adjustment (p = .002). Participants with higher fatigue had poorer adjustment in all five dimensions (p < .001).

Conclusions

Although the majority of survivors are well adjusted, subgroups may experience significant poor social adjustment. Specifically, survivors with fatigue are at risk to experience lower levels of social adjustment. Development of effective rehabilitation strategies to improve affected areas of social health is warranted, and all HCT survivors should be screened periodically for social maladjustment and provided with resources and referrals.

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References

  1. Majhail NS, Tao L, Bredeson C, Davies S, Dehn J, Gajewski JL, Hahn T, Jakubowski A, Joffe S, Lazarus HM, Parsons SK, Robien K, Lee SJ, Kuntz KM (2013) Prevalence of hematopoietic cell transplant survivors in the United States. Biol Blood Marrow Tr 19:1498–1501

    Article  Google Scholar 

  2. Bevans M, El-Jawahri A, Tierney DK, Wiener L, Wood WA, Hoodin F, Kent EE, Jacobsen PB, Lee SJ, Hsieh MM, Denzen EM, Syrjala KL (2017) National Institutes of Health hematopoietic cell transplantation late effects initiative: the patient-centered outcomes working group report. Biol Blood Marrow Transplant 23:538–551

    Article  PubMed  Google Scholar 

  3. Bevans MF, Mitchell SA, Barrett JA, Bishop MR, Childs R, Fowler D, Krumlauf M, Prince P, Shelburne N, Wehrlen L, Yang L (2014) Symptom distress predicts long-term health and well-being in allogeneic stem cell transplantation survivors. Biol Blood Marrow Tr 20:387–395

    Article  Google Scholar 

  4. Syrjala KL, Martin PJ, Lee SJ (2012) Delivering care to long-term adult survivors of hematopoietic cell transplantation. J Clin Oncol 30:3746–3751

    Article  PubMed  PubMed Central  Google Scholar 

  5. Im A, Mitchell SA, Steinberg SM, Curtis L, Berger A, Baird K, Kuzmina Z, Joe G, Comis LE, Juckett M, Avila D, Baruffaldi J, Masuch L, Pirsl F, Pavletic SZ (2016) Prevalence and determinants of fatigue in patient with moderate to severe chronic GvHD. Bone Marrow Transplant 51:705–712

    Article  PubMed  CAS  Google Scholar 

  6. Norkin M, Hsu JW, Wingard JR (2012) Quality of life, social challenges, and psychosocial support for long-term survivors after allogeneic hematopoietic stem-cell transplantation. Semin Hematol 49:104–109

    Article  PubMed  Google Scholar 

  7. Larsen PD (2016) Psychosocial adjustment. In: Lubkins IM, Larsen PD (eds) Chronic illness: impact and intervention. Jones & Bartlett Learning, Burlington, MA, pp 43–62

    Google Scholar 

  8. Battiwalla M, Hashmi S, Majhail N, Pavletic S, Savani BN, Shelburne N (2017) National Institutes of Health hematopoietic cell transplantation late effects initiative: developing recommendations to improve survivorship and long-term outcomes. Biol Blood Marrow Tr 23:6–9

    Article  Google Scholar 

  9. Majhail NS, Rizzo JD, Lee SJ, Aljurf M, Atsuta Y, Bonfim C, Burns LJ, Chaudhri N, Davies S, Okamoto S, Seber A, Socie G, Szer J, Van Lint MT, Wingard JR, Tichelli A, for the Center for International Blood and Marrow Transplant Research (CIBMTR), American Society for Blood and Marrow Transplantation (ASBMT), European Group for Blood and Marrow Transplantation (EBMT), Asia-Pacific Blood and Marrow Transplantation Group (APBMT), Bone Marrow Transplant Society of Australia and New Zealand (BMTSANZ), East Mediterranean Blood and Marrow Transplantation Group (EMBMT), Sociedade Brasileira de Transplante de Medula Ossea (SBTMO) (2012) Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation. Biol Blood Marrow Tr 18:348–371

    Article  Google Scholar 

  10. Bush NE, Donaldson GW, Haberman MH, Dacanay R, Sullivan KM (2000) Conditional and unconditional estimation of multidimensional quality of life after hematopoietic stem cell transplantation: a longitudinal follow-up of 415 patients. Biol Blood Marrow Tr 6:576–591

    Article  CAS  Google Scholar 

  11. Kopp M, Holzner B, Meraner V, Sperner-Unterweger B, Kemmler G, Nguyen-Van-Tam DP, Nachbaur D (2005) Quality of life in adult hematopoietic cell transplant patients at least 5 yr after treatment: a comparison with healthy controls. Eur J Haematol 74:304–308

    Article  PubMed  Google Scholar 

  12. Mosher CE, Redd WH, Rini CM, Burkhalter JE, DuHamel KN (2009) Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature. Psycho-Oncology 18:113–127

    Article  PubMed  PubMed Central  Google Scholar 

  13. Bartley EJ, Edmond SN, Wren AA, Somers TJ, Teo I, Zhou SC, Rowe KA, Abernethy AP, Keefe FJ, Shelby RA (2014) Holding back moderates the association between health symptoms and social well-being in patients undergoing hematopoietic stem cell transplantation. J Pain Symptom Manag 48:374–384

    Article  Google Scholar 

  14. Chiodi S, Spinelli S, Ravera G, Petti AR, Van Lint MT, Lamparelli T, Gualandi F, Occhini D, Mordini N, Berisso G, Bregante S, Frassoni F, Bacigalupo A (2000) Quality of life in 244 recipients of allogeneic bone marrow transplantation. Br J Haematol 110:614–619

    Article  PubMed  CAS  Google Scholar 

  15. Syrjala KL, Kurland BF, Abrams JR, Sanders JE, Heiman JR (2008) Sexual function changes during the 5 years after high-dose treatment and hematopoietic cell transplantation for malignancy, with care-matched controls at 5 years. Blood 111:989–996

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  16. Wong FL, Francisco L, Togawa K, Kim H, Bosworth A, Atencio L, Hanby C, Grant M, Kandeel F, Forman SJ, Bhatia S (2013) Longitudinal trajectory of sexual functioning after hematopoietic cell transplantation: impact of chronic graft-versus-host disease and total body irradiation. Blood 122:3973–3981

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  17. Andrykowski MA, Bishop MM, Hahn EA, Cella DF, Beaumont JL, Brady MJ, Horowitz MM, Sobocinski KA, Rizzo JD, Wingard JR (2005) Long-term health-related quality of life, growth and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol 23:599–608

    Article  PubMed  Google Scholar 

  18. Wingard JR, Vogelsang GB, Deeg HJ (2002) Stem cell transplantation: supportive care and long-term complications. Hematology Am Soc Hematol Educ Program 2002:422–444

    Article  Google Scholar 

  19. Danaher EH, Ferrans C, Verlen E, Ravandi F, van Besien K, Gelms J, Dieterle N (2006) Fatigue and physical activity in patients undergoing hematopoietic stem cell transplant. Oncol Nurs Forum 33:721–727

    Google Scholar 

  20. Hjermstad MJ, Knobel H, Brinch L, Fayers PM, Loge JH, Holte H, Kaasa S (2004) A prospective study of health-related quality of life, fatigue, anxiety and depression 3-5 years after stem cell transplantation. Bone Marrow Transplant 34:257–266

    Article  PubMed  CAS  Google Scholar 

  21. Jafari H, Jannati Y, Nesheli HM, Hassanpour S (2017) Effects of nonpharmacological interventions on reducing fatigue after hematopoietic stem cell transplantation. J Res Med Sci 22:13

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  22. Bieri S, Roosnek E, Helg C, Verholen F, Robert D, Chapuis B, Passweg J, Miralbell R, Chalandon Y (2008) Quality of life and social integration after allogeneic hematopoietic SCT. Bone Marrow Transplant 42:819–827

    Article  PubMed  CAS  Google Scholar 

  23. Esser P, Kuba K, Mehnert A, Schwinn A, Schirmer L, Schulz-Kindermann F, Kruse M, Koch U, Zander AR, Kroger N, Schilling G, Gotze H, Scherwath A (2017) Investigating the temporal course, relevance and risk factors of fatigue over 5 years: a prospective study among patients receiving allogeneic HSCT. Bone Marrow Transplant 52:753–758

    Article  PubMed  CAS  Google Scholar 

  24. Gielissen MFM, Schattenberg AVM, Verhagen CAHHVM, Rinkes MJ, Bremmers MEJ, Bleijenberg G (2007) Experience of severe fatigue in long-term survivors of stem cell transplantation. Bone Marrow Transplant 39:595–603

    Article  PubMed  CAS  Google Scholar 

  25. Jim HSL, Sutton SK, Jacobsen PB, Martin PJ, Flowers ME, Lee SJ (2016) Risk factors for depression and fatigue among survivors of hematopoietic cell transplantation. Cancer 122:1290–1297

    Article  PubMed  Google Scholar 

  26. LaVoy ECP, Fagundes CP, Dantzser R (2016) Exercise, inflammation, and fatigue in cancer survivors. Exerc Immunol Rev 22:82–93

    PubMed  PubMed Central  Google Scholar 

  27. Munir F, Yarker J, McDermott H (2009) Employment and the common cancers: correlates of work ability during or following cancer treatment. Occup Med (Lond) 59:381–389

    Article  CAS  Google Scholar 

  28. Morrison EJ, Ehlers SL, Bronars CA, Patten CA, Brockman TA, Cerhan JR, Hogan WJ, Hashmi SK, Gastineau DA (2016) Employment status as an indicator of recovery and function one year after hematopoietic stem cell transplantation. Biol Blood Marrow Tr 22:1690–1169

    Article  Google Scholar 

  29. Bevans MF, Mitchell SA, Barrett AJ, Bishop M, Childs R, Fowler D, Krumlauf M, Prince P, Shelburne N, Wehrlen L (2011) Function, adjustment, quality of life and symptoms (FAQS) in allogeneic hematopoietic stem cell transplantation (HSCT) survivors: a study protocol. Health Qual Life Outcomes 9:24

    Article  PubMed  PubMed Central  Google Scholar 

  30. Sorror ML, Maris MB, Storb R, Baron F, Sandmaier BM, Maloney DG, Storer B (2005) Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT. Blood 106:2912–2919

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  31. Cella D (2004) Manual of the Functional Assessment of Chronic Illness Therapy (FACIT) measurement system, version 4.1. Center of Outcomes, Research, and Education (CORE), Evanston Northwestern Healthcare and Northwestern University, Evanston, IL

  32. Van Belle S, Paridaens R, Evers G, Kerger J, Bron D, Foubert J, Ponnet G, Steichel DV, Heremans C, Rosillon D (2005) Comparison of proposed diagnostic criteria with FACT-F and VAS for cancer-related fatigue: proposal for use as a screening tool. Support Care Cancer 13:246–254

    Article  PubMed  Google Scholar 

  33. Derogatis LR (1986) The psychosocial adjustment to illness scale (PAIS). J Psychosom Res 30:77–91

    Article  PubMed  CAS  Google Scholar 

  34. IBM Corp. (2012) IBM SPSS statistics for Windows, version 21.0. IBM Corp.: Armonk, NY

  35. Molassiotis A, vandenAkker OBA, Milligan DW, Goldman JM, Boughton BJ, Holmes JA, Thomas S (1996) Quality of life in long-term survivors of marrow transplantation: comparison with a matched group receiving maintenance chemotherapy. Bone Marrow Transplant 17:249–258

  36. Khera N, Zeliadt SB, Lee SJ (2012) Economics of hematopoietic cell transplantation. Blood 120:1545–1551

    Article  PubMed  CAS  Google Scholar 

  37. Majhail NS (2017) Long-term complications after hematopoietic cell transplantation. Hematol Oncol Stem Cell Ther. https://doi.org/10.1016/j.hemonc.2017.05.009

  38. Langer SL, Yi JC, Storer BE, Syrjala KL (2010) Marital adjustment, satisfaction and dissolution among hematopoietic stem cell transplant patients and spouses: a prospective, five-year longitudinal investigation. Psycho-Oncology 19:190–200

    Article  PubMed  PubMed Central  Google Scholar 

  39. Hashmi SK, Srivastava A, Rasheed W, Adil S, Wu T, Jagasia M, Nassar A, Hwang WYK, Hamidieh AA, Greinix HT, Pasquini MC, Apperley JF, Aljurf M (2017) Cost and quality issues in establishing hematopoietic cell transplant program in developing countries. Hematol Oncol Stem Cell Ther. https://doi.org/10.1016/j.hemonc.2017.05.017

  40. Bloom JR, Stewart SL, Chang S, Banks PJ (2004) Then and now: quality of life of young breast cancer survivors. Psycho-Oncology 13:147–160

    Article  PubMed  Google Scholar 

  41. Helgeson VS, Reynolds KA, Tomich PL (2006) A meta-analytic review of benefit finding and growth. J Consult Clin Psychol 74:797–816

    Article  PubMed  Google Scholar 

  42. Kirchhoff AC, Leisenring W, Syrjala KL (2010) Prospective predictors of return to work in the 5 years after hematopoietic cell transplantation. J Cancer Surviv 4:33–44

    Article  PubMed  PubMed Central  Google Scholar 

  43. Duncan CN, Majhail NS, Brazauskas R, Wang Z, Cahn JY, Frangoul HA, Hayashi RJ, Hsu JW, Kamble RT, Kasow KA, Khera N, Lazarus HM, Loren AW, Marks DI, Maziarz RT, Mehta P, Myers KC, Norkin M, Pidala JA, Porter DL, Reddy V, Saber W, Savani BN, Schouten HC, Steinberg A, Wall DA, Warwick AB, Wood WA, Yu LC, Jacobsohn DA, Sorror ML (2015) Long-term survival and late effects among one-year survivors of second allogeneic hematopoietic cell transplantation for relapsed acute leukemia and myelodysplastic syndromes. Biol Blood Marrow Tr 21:151–158

    Article  Google Scholar 

  44. Berger AM, Mitchell SA, Jacobsen PB, Pirl WF (2015) Screening, evaluation, and management of cancer-related fatigue: ready for implementation to practice? CA Cancer J Clin 65:190–211

    Article  PubMed  Google Scholar 

  45. Denlinger CS, Ligibel JA, Are M, Baker KS, Broderick G, Demark-Wahnefried W, Friedman DL, Goldman M, Jones LW, King A, Ku GH, Kvale E, Langbaum TS, McCabe MS, Melisko M, Montoya JG, Mooney K, Morgan MA, Moslehi JJ, O’Connor T, Overholser L, Paskett ED, Peppercorn J, Rodriguez MA, Ruddy KJ, Sanft T, Silverman P, Smith S, Syrjala KL, Urba SG, Wakabayashi MT, Zee P, McMillian NR, Freedman-Cass DA (2016) NCCN guidelines (R) insights survivorship, version 1.2016 featured updates to the NCCN guidelines J Natl Compr Canc Netw 14:715-724

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Acknowledgements

The authors thank Stephen Klagholz, BS; Lisa Cook, RN, MSN; Eleftheria Koklanaris, RN, BSN, OCN®; Bazetta B. Schuver, RN, BSN; Patricia Prince, MEd, MSW; Kathleen Castro, RN, MS, AOCN®; Michael Krumlauf, RN, BSN, OCN®; Georgie Cusack, MS, RN, AOCNS®; Bipin Savani, MD; Daniel H. Fowler, MD; Richard Childs, MD; John A. Barrett, MD; Gwenyth Wallen, RN, PhD; the NCI and NHLBI Intramural Research Transplant Teams; the NIH Clinical Center staff, and research participants.

Funding

This research was funded by the Intramural Research Program at the National Institutes of Health, Clinical Center.

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Correspondence to Margaret F. Bevans.

Ethics declarations

All patients provided written informed consent before participation, which was approved by the National Heart, Lung and Blood Institute Intramural Institutional Review Board (NCT00128960).

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

The study was approved by the National Heart, Lung and Blood Institute Intramural Institutional Review Board (NCT00128960).

Informed consent

Informed consent was obtained from all individual participants included in this study.

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Park, J., Wehrlen, L., Mitchell, S.A. et al. Fatigue predicts impaired social adjustment in survivors of allogeneic hematopoietic cell transplantation (HCT). Support Care Cancer 27, 1355–1363 (2019). https://doi.org/10.1007/s00520-018-4411-y

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  • DOI: https://doi.org/10.1007/s00520-018-4411-y

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