Top

Published in:

01-09-2011

Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation

Authors: Karen L. Syrjala, Allison C. Stover, Jean C. Yi, Samantha B. Artherholt, Eleni M. Romano, Gary Schoch, Susan Stewart, Mary E. D. Flowers

Published in: Journal of Cancer Survivorship | Issue 3/2011

Abstract

Introduction

The Internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper, we describe the development and implementation of an Internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors.

Methods

A cross-disciplinary team designed, wrote content, and programmed an Internet site for online study registration, consent, assessment, and study implementation. All survivors who were 3–18 years after HSCT for hematologic malignancy and treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired.

Results

Of 1,775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD, 12.5; age range, 18–79 years), with 56% male. Fifty-seven percent required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment.

Discussions/conclusions

This study demonstrated the potential for providing Internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship Internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors.

Implications for cancer survivors

While Internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information, and resource needs of cancer survivors.

Committee on Cancer Survivorship: Improving Care and Quality of Life. From cancer patient to cancer survivor: lost in transition. Washington, DC: National Academies Press; 2005.

Chow EJ, Mueller BA , Baker KS, Cushing-Haugen KL, Flowers MED, Martin PJ. Cardiovascular hospitalizations and mortality among recipients of hematopoietic stem cell transplantation. Annals of Internal Medicine. 2011.

Hewitt M, Rowland JH, Yancik R. Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci. 2003;58:82–91.PubMedCrossRef

Baker KS, Ness KK, Steinberger J, Carter A, Francisco L, Burns LJ, et al. Diabetes, hypertension, and cardiovascular events in survivors of hematopoietic cell transplantation: a report from the bone marrow transplantation survivor study. Blood. 2007;109:1765–72.PubMedCrossRef

Yabroff KR, Lawrence WF, Clauser S, Davis WW, Brown ML. Burden of illness in cancer survivors: findings from a population-based national sample. J Natl Cancer Inst. 2004;96:1322–30.PubMedCrossRef

Stricker CT, Jacobs LA. Physical late effects in adult cancer survivors. Oncol Nurse Edition. 2008;22:33–41.

Demark-Wahnefried W, Clipp EC, Lipkus IM, Lobach D, Snyder DC, Sloane R, et al. Main outcomes of the FRESH START trial: a sequentially tailored, diet and exercise mailed print intervention among breast and prostate cancer survivors. J Clin Oncol. 2007;25:2709–18.PubMedCrossRef

Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. NEJM. 2006;355:1572–82.PubMedCrossRef

Martin PJ, Counts GW, Appelbaum FR, Lee SJ, Sanders JE, Deeg HJ, et al. Life expectancy in patients surviving more than 5 years after hematopoietic cell transplantation. J Clin Oncol. 2010;28:1011–6.PubMedCrossRef

10.

Rizzo JD, Wingard JR, Tichelli A, Lee SJ, van Lint MT, Burns LJ, et al. Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation: joint recommendations of the European Group for Blood and Marrow Transplantation, the Center for International Blood and Marrow Transplant Research, and the American Society of Blood and Marrow Transplantation. Biol Blood Marrow Transplant. 2006;12:138–51.PubMedCrossRef

11.

Lowe T, Bhatia S, Somlo G. Second malignancies after allogeneic hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2007;13:1121–34.PubMedCrossRef

12.

Tichelli A, Bucher C, Rovo A, Stussi G, Stern M, Paulussen M, et al. Premature cardiovascular disease after allogeneic hematopoietic stem-cell transplantation. Blood. 2007;110:3463–71.PubMedCrossRef

13.

Syrjala KL, Langer SL, Abrams JR, Storer B, Sanders JE, Flowers MED, et al. Recovery and long-term function after hematopoietic cell transplantation for leukemia or lymphoma. JAMA. 2004;291:2335–43.PubMedCrossRef

14.

Syrjala KL, Langer SL, Abrams JR, Storer BE, Martin PJ. Late effects of hematopoietic cell transplantation among 10-year adult survivors compared with case-matched controls. J Clin Oncol. 2005;23:6596–606.PubMedCrossRef

15.

Andrykowski MA, Bishop MM, Hahn EA, Cella DF, Beaumont JL, Brady MJ, et al. Long-term health-related quality of life, growth, and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol. 2005;23:599–608.PubMedCrossRef

16.

Hjermstad MJ, Knobel H, Brinch L, Fayers PM, Loge JH, Holte H, et al. A prospective study of health-related quality of life, fatigue, anxiety and depression 3–5 years after stem cell transplantation. Bone Marrow Transplant. 2004;34:257–66.PubMedCrossRef

17.

Baker KS, Gurney JG, Ness KK, Bhatia R, Forman SJ, Francisco L, et al. Late effects in survivors of chronic myeloid leukemia treated with hematopoietic cell transplantation: results from the bone marrow transplant survivor study. Blood. 2004;104:1898–906.PubMedCrossRef

18.

Rovo A, Daikeler T, Stern M, Halter J, Studt JD, Buser A, et al. Physical and not mental health is impaired in very long-term survivors after HSCT compared with their respective donors: a paired analysis. Blood. 2008;111:1740–1.PubMedCrossRef

19.

Majhail NS, Ness KK, Burns LJ, Sun CL, Carter A, Francisco L, et al. Late effects in survivors of Hodgkin and non-Hodgkin lymphoma treated with autologous hematopoietic cell transplantation: a report from the bone marrow transplant survivor study. Biol Blood Marrow Transplant. 2007;13:1153–9.PubMedCrossRef

20.

Ness KK, Wall MM, Oakes JM, Robison LL, Gurney JG. Physical performance limitations and participation restrictions among cancer survivors: a population-based study. Ann Epidemiol. 2006;16:197–205.PubMedCrossRef

21.

Sweeney C, Schmitz KH, Lazovich D, Virnig BA, Wallace RB, Folsom AR. Functional limitations in elderly female cancer survivors. J Natl Cancer Inst. 2006;98:521–9.PubMedCrossRef

22.

Keating NL, Nørredam M, Landrum MB, Huskamp HA, Meara E. Physical and mental health status of older long-term cancer survivors. J Am Geriatr Soc. 2005;53:2145–52.PubMedCrossRef

23.

Robison LL, Green DM, Hudson M, Meadows AT, Mertens AC, Packer RJ, et al. Long-term outcomes of adult survivors of childhood cancer. Cancer. 2005;104:2557–64.PubMedCrossRef

24.

Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA. 2003;290:1583–92.PubMedCrossRef

25.

Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC, et al. Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med. 2005;143:639–47.PubMed

26.

Bhatia S, Robison LL, Francisco L, Carter A, Liu Y, Grant M, et al. Late mortality in survivors of autologous hematopoietic-cell transplantation: report from the Bone Marrow Transplant Survivor Study. Blood. 2005;105:4215–22.PubMedCrossRef

27.

Bhatia S, Francisco L, Carter A, Sun CL, Baker KS, Gurney JG, et al. Late mortality after allogeneic hematopoietic cell transplantation and functional status of long-term survivors: report from the Bone Marrow Transplant Survivor Study. Blood. 2007;110:3784–92.PubMedCrossRef

28.

Bradley L, Yaworsky PJ, Walsh FS. Myostatin as a therapeutic target for musculoskeletal disease. Cell Mol Life Sci. 2008;65:2119–24.PubMedCrossRef

29.

Khera N, Chow EJ, Leisenring WM, Syrjala K.L., Baker KS, Flowers MED, et al. Factors associated with adherence to preventive care practices among hematopoietic cell transplantation survivors. Biol Blood Marrow Transplant. 2011

30.

Bishop MM, Lee SJ, Beaumont JL, Andrykowski MA, Rizzo JD, Sobocinski KA, et al. The preventive health behaviors of long-term survivors of cancer and hematopoietic stem cell transplantation compared with matched controls. Biol Blood Marrow Transplant. 2010;16:207–14.PubMedCrossRef

31.

Lee SJ, Leisenring WM, Khera N, et al. Utilization of preventive care services by hematopoietic cell transplant survivors [abstract]. Biol Blood Marrow Transplant. 2010;16:S226.CrossRef

32.

Nissen MJ, Beran MS, Lee MW, Mehta SR, Pine DA, Swenson KK. Views of primary care providers on follow-up care of cancer patients. Fam Med. 2007;39:477–82.PubMed

33.

Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive health communication applications for people with chronic disease. Cochrane Database of Systematic Reviews. 2005;CD004274.

34.

Eysenbach G, Kummervold PE. “Is cybermedicine killing you?”—the story of a Cochrane disaster. J Med Internet Res. 2005;7:e21.PubMedCrossRef

35.

Buis LR, Janney AW, Hess ML, Culver SA, Richardson CR. Barriers encountered during enrollment in an internet-mediated randomized controlled trial. Trials. 2009;10:76.PubMedCrossRef

36.

Owen JE, Klapow JC, Roth DL, Shuster Jr JL, Bellis J, Meredith R, et al. Randomized pilot of a self-guided internet coping group for women with early-stage breast cancer. Ann Behav Med. 2005;30:54–64.PubMedCrossRef

37.

Oenema A, Brug J, Dijkstra A, de Weerdt I, De Vries H. Efficacy and use of an internet-delivered computer-tailored lifestyle intervention, targeting saturated fat intake, physical activity and smoking cessation: a randomized controlled trial. Ann Behav Med. 2008;35:125–35.PubMedCrossRef

38.

Lorig KR, Ritter PL, Laurent DD, Plant K. Internet-based chronic disease self-management: a randomized trial. [Erratum appears in Med Care. 2007 Mar;45(3):276]. Med Care. 2006;44:964–71.PubMedCrossRef

39.

RJ Van ’t, Crutzen R, De Vries H. Investigating predictors of visiting, using, and revisiting an online health-communication program: a longitudinal study. J Med Internet Res. 2010;12:e37.

40.

Bennett GG, Glasgow RE. The delivery of public health interventions via the Internet: actualizing their potential. Annu Rev Public Health. 2009;30:273–92.PubMedCrossRef

41.

Ahern NR. Using the Internet to conduct research. Nurse Res. 2005;13:55–70.PubMed

42.

Hanscom B, Lurie JD, Homa K, Weinstein JN. Computerized questionnaires and the quality of survey data. Spine. 2002;27:1797–801.PubMedCrossRef

43.

Syrjala KL, Yi JC, Artherholt SB, Stover AC, Abrams JA. Measuring musculoskeletal symptoms in long-term cancer survivors who receive hematopoietic cell transplantation. J Cancer Surviv. 2010;4:225–35.PubMedCrossRef

44.

Mosher CE, Redd WH, Rini CM, Burkhalter JE, DuHamel KN. Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature. Psycho Oncol. 2009;18:113–27.CrossRef

45.

Mosher CE, DuHamel KN, Rini C, Corner G, Lam J, Redd WH. Quality of life concerns and depression among hematopoietic stem cell transplant survivors. Support Care Cancer. 2011

46.

Syrjala KL, Kurland BF, Artherholt SB, Abrams JR, Langer SL. Five-year longitudinal evaluation of physical and psychological function in hematopoietic cell transplantation (HCT) survivors. Psycho Oncol. 2010;19:S2.CrossRef

47.

Loberiza Jr FR, Rizzo JD, Bredeson CN, Antin JH, Horowitz MM, Weeks JC, et al. Association of depressive syndrome and early deaths among patients after stem-cell transplantation for malignant diseases. J Clin Oncol. 2002;20:2118–26.PubMedCrossRef

48.

Rusiewicz A, DuHamel KN, Burkhalter J, Ostroff J, Winkel G, Scigliano E, et al. Psychological distress in long-term survivors of hematopoietic stem cell transplantation. Psycho Oncol. 2008;17:329–37.CrossRef

49.

DuHamel KN, Mosher CE, Winkel G, Labay LE, Rini C, Meschian YM, et al. Randomized clinical trial of telephone-administered cognitive–behavioral therapy to reduce PTSD and distress symptoms after hematopoietic stem cell transplantation. J Clin Oncol. 2010;28:3754–61.PubMedCrossRef

50.

McQuellon RP, Russell GB, Rambo TD, Craven BL, Radford J, Perry JJ, et al. Quality of life and psychological distress of bone marrow transplant recipients: the ‘time trajectory’ to recovery over the first year. Bone Marrow Transplant. 1998;21:477–86.PubMedCrossRef

51.

Syrjala KL, Abrams JR, Roth-Roemer SR, Dikmen S, Heiman J, Thomas AM. Efficacy of a randomized controlled trial (RCT) to enhance recovery from hematopoietic stem cell transplantation (HSCT) [abstract]. Psycho Oncol. 2004;13:397.

52.

Bush NE, Haberman M, Donaldson G, Sullivan KM. Quality of life of 125 adults surviving 6–18 years after bone marrow transplantation. Soc Sci Med. 1995;40:479–90.PubMedCrossRef

53.

Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112:2577–92.PubMedCrossRef

54.

Devine EC. Meta-analysis of the effect of psychoeducational interventions on pain in adults with cancer. Oncol Nurs Forum Online. 2003;30:75–89.CrossRef

55.

Devine EC, Westlake SK. The effects of psychoeducational care provided to adults with cancer: meta-analysis of 116 studies. Oncol Nurs Forum. 1995;22:1369–81.PubMed

56.

Vallance JK, Courneya KS, Plotnikoff RC, Mackey JR. Analyzing theoretical mechanisms of physical activity behavior change in breast cancer survivors: results from the activity promotion (ACTION) trial. Ann Behav Med. 2008;35:150–8.PubMedCrossRef

57.

Reynolds KD, Buller DB, Yaroch AL, Maloy J, Geno CR, Cutter GR. Effects of program exposure and engagement with tailored prevention communication on sun protection by young adolescents. J Health Commun. 2008;13:619–36.PubMedCrossRef

58.

Nezu AM, Nezu CM, Perri MG. Problem-solving therapy for depression: theory, research, and clinical guidelines. New York, NY: Wiley; 1989.

59.

Oxman TE, Hegel MT, Hull JG, Dietrich AJ. Problem-solving treatment and coping styles in primary care for minor depression. J Consult Clin Psychol. 2008;76:933–43.PubMedCrossRef

60.

Leslie E, Marshall AL, Owen N, Bauman A. Engagement and retention of participants in a physical activity Website. Prev Med. 2005;40:54–9.PubMedCrossRef

61.

Joinson AN, Reips U. Personalized salutation, power of sender and response rates to Web-based surveys. Comput Hum Behav. 2007;23:1372–83.CrossRef

62.

Mayer DK, Ratichek S, Berhe H, Stewart S, McTavish F, Gustafson D, et al. Development of a health-related Website for parents of children receiving hematopoietic stem cell transplant: HSCT-CHESS. J Cancer Surviv. 2010;4:67–73.PubMedCrossRef

Title: Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation
Authors: Karen L. Syrjala
Allison C. Stover
Jean C. Yi
Samantha B. Artherholt
Eleni M. Romano
Gary Schoch
Susan Stewart
Mary E. D. Flowers
Publication date: 01-09-2011
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 3/2011
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-011-0182-x

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Introduction

Methods

Results

Discussions/conclusions

Implications for cancer survivors

Please log in to get access to this content

Other articles of this Issue 3/2011

Improving short-term sun safety practices among adolescent survivors of childhood cancer: a randomized controlled efficacy trial

Baseline patient-reported kidney cancer-specific symptoms as an indicator for median survival in sorafenib-refractory metastatic renal cell carcinoma

Structuring survivorship care: discipline-specific clinician perspectives

Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Needs, expectations and attendance among participants of a cancer wellness centre in Montreal, Quebec

Health-related Internet use among cancer survivors: data from the Health Information National Trends Survey, 2003–2008

Keynote webinar | Spotlight on antibody–drug conjugates in cancer