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Published in: Journal of Cancer Survivorship 3/2022

17-05-2021 | Fatigue

Development of a survivorship screening tool in survivors of hematopoietic cell transplant

Authors: Jennifer A. Hydeman, Megan E. Pailler, Pamela D. Paplham, Michael A. Zevon

Published in: Journal of Cancer Survivorship | Issue 3/2022

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Abstract

Purpose

This study describes the development of a screening measure focused on the potential needs of hematopoietic cell transplant (HCT) survivors at least 1-year post-transplant.

Methods

A multidisciplinary team met regularly to develop a screening measure to better understand the ongoing medical and clinical symptoms experienced by survivors of HCT. This measure was given to 299 patients presenting to an HCT survivorship clinic, with referrals offered for any issues reaching clinical threshold. A factor analysis was performed to examine the underlying factor structure of the measure.

Results

Analyses indicated a 3-factor underlying structure, including physical, emotional, and practical concerns. Areas most consistently endorsed as ongoing areas of concern included fatigue, financial concerns, and worry about their future. Interestingly, while many patients were interested in referrals for these issues, some patients did not wish to have their symptoms managed at our center.

Conclusions

Survivors of hematopoietic cell transplant continue to experience symptoms well after their treatment has ended, including issues related to the emotional, physical, and practical impact of their illness and treatment regimen. It is vital that their providers understand the frequency of these concerns as well as patients’ preference for intervention.

Implications for cancer survivors

While HCT has become increasingly successful in treating hematologic cancers, many survivors experience a range of issues post-transplant. Survivorship care for these patients must include ongoing thorough assessment related to the practical, emotional, and medical symptoms experienced post-transplant, with appropriate intervention provided in-house where possible or in the community according to patient preference.
Literature
1.
go back to reference de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–70.CrossRef de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–70.CrossRef
2.
go back to reference Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, Lamont L, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90:2297–304.CrossRef Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, Lamont L, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90:2297–304.CrossRef
3.
go back to reference Stanton A. Psychosocial concerns and interventions for cancer survivors. J Clin Oncol. 2006;24:5132–7.CrossRef Stanton A. Psychosocial concerns and interventions for cancer survivors. J Clin Oncol. 2006;24:5132–7.CrossRef
4.
go back to reference Servaes P, Verhagen S, Bleijenberg G. Determinants of chronic fatigue in disease-free breast cancer patients: a cross-sectional study. Ann Oncol. 2002;13(4):737–44.CrossRef Servaes P, Verhagen S, Bleijenberg G. Determinants of chronic fatigue in disease-free breast cancer patients: a cross-sectional study. Ann Oncol. 2002;13(4):737–44.CrossRef
5.
go back to reference American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2014-2015. Atlanta: American Cancer Society; 2014. American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2014-2015. Atlanta: American Cancer Society; 2014.
6.
go back to reference Blanch-Hartigan D, Chawla N, Moser R, Finney Rutten L, Hesse B, Arora NJ. Trends in cancer survivors’ experience of patient-centered communication: results from the Health Information National Trends Survey (HINTS). J Cancer Surviv. 2016;10:1067–77.CrossRef Blanch-Hartigan D, Chawla N, Moser R, Finney Rutten L, Hesse B, Arora NJ. Trends in cancer survivors’ experience of patient-centered communication: results from the Health Information National Trends Survey (HINTS). J Cancer Surviv. 2016;10:1067–77.CrossRef
7.
go back to reference Majhail NS, Tao L, Bredeson C, Davies S, Dehn J, Gajewski JL, et al. Prevalence of hematopoietic cell transplant survivors in the United States. Biol Blood Marrow Transplant. 2013;19(10):1498–501.CrossRef Majhail NS, Tao L, Bredeson C, Davies S, Dehn J, Gajewski JL, et al. Prevalence of hematopoietic cell transplant survivors in the United States. Biol Blood Marrow Transplant. 2013;19(10):1498–501.CrossRef
8.
go back to reference Inamoto Y, Lee SJ. Late effects of blood and marrow transplantation. Haematologica. 2017;102:614–25.CrossRef Inamoto Y, Lee SJ. Late effects of blood and marrow transplantation. Haematologica. 2017;102:614–25.CrossRef
9.
go back to reference Booker R, Walker L, Raffin BS. Sexuality after hematopoietic stem cell transplantation: A mixed methods study. Eur J Oncol Nurs. 2019;39:10–20.CrossRef Booker R, Walker L, Raffin BS. Sexuality after hematopoietic stem cell transplantation: A mixed methods study. Eur J Oncol Nurs. 2019;39:10–20.CrossRef
10.
go back to reference Syrjala KL, Artherholt SB, Kurland BF, Langer SL, Roth-Roemer S, Elrod JAB, et al. Prospective neurocognitive function over 5 years after allogeneic hematopoietic cell transplantation for cancer survivors compared with matched controls at 5 years. J Clin Oncol. 2011;29(17):2397–404.CrossRef Syrjala KL, Artherholt SB, Kurland BF, Langer SL, Roth-Roemer S, Elrod JAB, et al. Prospective neurocognitive function over 5 years after allogeneic hematopoietic cell transplantation for cancer survivors compared with matched controls at 5 years. J Clin Oncol. 2011;29(17):2397–404.CrossRef
11.
go back to reference Trask PC, Paterson A, Riba M, Brines B, Griffith K, Parker P, et al. Assessment of psychological distress in prospective bone marrow transplant patients. Bone Marrow Transplant. 2002;29(11):917–25.CrossRef Trask PC, Paterson A, Riba M, Brines B, Griffith K, Parker P, et al. Assessment of psychological distress in prospective bone marrow transplant patients. Bone Marrow Transplant. 2002;29(11):917–25.CrossRef
12.
go back to reference Mosher CE, Lepore SJ, Wu L, Austin J, Valdimarsdottir H, Rowley S, et al. Social correlates of distress following hematopoietic stem cell transplantation: exploring the role of loneliness and cognitive processing. J Health Psychol. 2012;17(7):1022–32.CrossRef Mosher CE, Lepore SJ, Wu L, Austin J, Valdimarsdottir H, Rowley S, et al. Social correlates of distress following hematopoietic stem cell transplantation: exploring the role of loneliness and cognitive processing. J Health Psychol. 2012;17(7):1022–32.CrossRef
13.
go back to reference Wen KY, Gustafson DH. Needs assessment for cancer patients and their families. Health Qual Life Outcomes. 2004;2:11.CrossRef Wen KY, Gustafson DH. Needs assessment for cancer patients and their families. Health Qual Life Outcomes. 2004;2:11.CrossRef
14.
go back to reference Avis NE, Ip E, Foley KL. Evaluation of the quality of life in adult cancer survivors (QLACS) scale for long-term cancer survivors in a sample of breast cancer survivors. Health Qual Life Outcomes. 2006;4:92.CrossRef Avis NE, Ip E, Foley KL. Evaluation of the quality of life in adult cancer survivors (QLACS) scale for long-term cancer survivors in a sample of breast cancer survivors. Health Qual Life Outcomes. 2006;4:92.CrossRef
15.
go back to reference Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: The CaSUN (cancer survivors’ unmet needs measure). Psychooncology. 2007;16:769–804. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: The CaSUN (cancer survivors’ unmet needs measure). Psychooncology. 2007;16:769–804.
16.
go back to reference Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, Taylor-Brown J. Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer. 2011;19(2):221–30.CrossRef Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, Taylor-Brown J. Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer. 2011;19(2):221–30.CrossRef
17.
go back to reference Hall A, D’Este C, Tzelepis F, Sanson-Fisher R, Lynagh M. The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: A cross-sectional study assessing the relevance and psychometric properties. BMC Health Serv Res. 2014;14:211.CrossRef Hall A, D’Este C, Tzelepis F, Sanson-Fisher R, Lynagh M. The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: A cross-sectional study assessing the relevance and psychometric properties. BMC Health Serv Res. 2014;14:211.CrossRef
19.
go back to reference Psychosocial Distress Practice Guidelines Panel. NCCN practice guidelines for the management of psychosocial distress. Oncology. 1999;13:113–47. Psychosocial Distress Practice Guidelines Panel. NCCN practice guidelines for the management of psychosocial distress. Oncology. 1999;13:113–47.
21.
go back to reference SAS [computer program]. Version 9.4. Cary, NC: SAS Institute Inc; 2014. SAS [computer program]. Version 9.4. Cary, NC: SAS Institute Inc; 2014.
22.
go back to reference O'Connor BP. SPSS and SAS programs for determining the number of components using parallel analysis and Velicer’s MAP test. Behav Res Methods Instrum Comput. 2000;32:396–402.CrossRef O'Connor BP. SPSS and SAS programs for determining the number of components using parallel analysis and Velicer’s MAP test. Behav Res Methods Instrum Comput. 2000;32:396–402.CrossRef
24.
go back to reference Cutillo A, O'Hea E, Person S, Lessard D, Harralson T, Boudreaux E. The Distress Thermometer: Cutoff points and clinical use. Oncol Nurs Forum. 2017;44(3):329–36.CrossRef Cutillo A, O'Hea E, Person S, Lessard D, Harralson T, Boudreaux E. The Distress Thermometer: Cutoff points and clinical use. Oncol Nurs Forum. 2017;44(3):329–36.CrossRef
Metadata
Title
Development of a survivorship screening tool in survivors of hematopoietic cell transplant
Authors
Jennifer A. Hydeman
Megan E. Pailler
Pamela D. Paplham
Michael A. Zevon
Publication date
17-05-2021
Publisher
Springer US
Keyword
Fatigue
Published in
Journal of Cancer Survivorship / Issue 3/2022
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-021-01043-5

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