Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials

David H Gustafson, Lori L DuBenske, Amy K Atwood, Ming-Yuan Chih, Roberta A Johnson, Fiona McTavish, Andrew Quanbeck, Roger L Brown, James F Cleary, Dhavan Shah, David H Gustafson, Lori L DuBenske, Amy K Atwood, Ming-Yuan Chih, Roberta A Johnson, Fiona McTavish, Andrew Quanbeck, Roger L Brown, James F Cleary, Dhavan Shah

Abstract

Background: Symptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could.

Objective: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver.

Methods: A pooled analysis from two randomized clinical trials (NCT00214162 and NCT00365963) compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only) that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-the-curve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined.

Results: When severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians (P<.001). Fewer symptom reports were completed in the group of caregivers whose reports went to clinicians than in the CHESS-Only group (P<.001), perhaps because caregivers, knowing their reports might be sent to a doctor, feared they might be bothering the clinician.

Conclusions: This study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress.

Trial registration: Clinicaltrials.gov NCT00214162; https://ichgcp.net/clinical-trials-registry/NCT00214162 (Archived by WebCite at http://www.webcitation.org/6nmgdGfuD) and Clinicaltrials.gov NCT00365963; https://ichgcp.net/clinical-trials-registry/NCT00365963 (Archived by WebCite at http://www.webcitation.org/6nmh0U8VP).

Keywords: Internet; communication barriers; eHealth; health communication; palliative care; signs and symptoms.

Conflict of interest statement

Conflicts of Interest: DHG, FM, RAJ, and AQ have a shareholder interest in CHESS Mobile Health, a public benefit corporation that develops health care technology for patients struggling with addiction. This relationship is managed by the authors and the University of Wisconsin-Madison’s Conflict of Interest Committee.

©David H Gustafson, Lori L DuBenske, Amy K Atwood, Ming-Yuan Chih, Roberta A Johnson, Fiona McTavish, Andrew Quanbeck, Roger L Brown, James F Cleary, Dhavan Shah. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 14.11.2017.

Figures

Figure 1
Figure 1
Participant flow.

References

    1. Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2(2):145–55.
    1. Haley WE. Family caregivers of elderly patients with cancer: understanding and minimizing the burden of care. J Support Oncol. 2003;1(4 Suppl 2):25–9.
    1. Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51(4):213–31.
    1. Walling AM, Keating NL, Kahn KL, Dy S, Mack JW, Malin J, Arora NK, Adams JL, Antonio AL, Tisnado D. Lower patient ratings of physician communication are associated with unmet need for symptom management in patients with lung and colorectal cancer. J Oncol Pract. 2016 Jun;12(6):e654–69. doi: 10.1200/JOP.2015.005538.
    1. Twycross R, Wilcock A. Symptom management in advanced cancer. 3rd ed. London: Radcliffe Medical Press; 2002.
    1. Bloche MG. Managing conflict at the end of life. N Engl J Med. 2005 Jun 09;352(23):2371–3. doi: 10.1056/NEJMp058104.
    1. Van Keer R, Deschepper R, Francke AL, Huyghens L, Bilsen J. Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: an ethnographic study. Crit Care. 2015 Dec 22;19:441. doi: 10.1186/s13054-015-1158-4.
    1. Gustafson DH. A good death. J Med Internet Res. 2007 Mar 14;9(1):e6. doi: 10.2196/jmir.9.1.e6.
    1. Parker-Pope T. Well.blogs.nytimes. New York: The New York Times; 2008. [2017-06-29]. 'Bothering' Your Doctor
    1. Prentice JC, Pizer SD. Delayed access to health care and mortality. Health Serv Res. 2007 Apr;42(2):644–62. doi: 10.1111/j.1475-6773.2006.00626.x.
    1. Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff (Millwood) 1999;18(2):182–8.
    1. Apple, Inc . Apple. Cupertino, CA: Apple, Inc; 2017. [2017-06-29]. A bold new way to look at your health
    1. Symple Health, Inc . itunes.apple. Cupertino, CA: iTunes, Apple, Inc; 2017. [2017-06-29]. Symple - Symptom Tracker & Health Diary .
    1. Coons SJ, Eremenco S, Lundy JJ, O'Donohoe P, O'Gorman H, Malizia W. Erratum to: Capturing Patient-Reported Outcome (PRO) data electronically: the past, present, and promise of ePRO measurement in clinical trials. Patient. 2015 Dec;8(6):571. doi: 10.1007/s40271-015-0121-4.
    1. Cleeland CS, Wang XS, Shi Q, Mendoza TR, Wright SL, Berry MD, Malveaux D, Shah PK, Gning I, Hofstetter WL, Putnam JB, Vaporciyan AA. Automated symptom alerts reduce postoperative symptom severity after cancer surgery: a randomized controlled clinical trial. J Clin Oncol. 2011 Mar 10;29(8):994–1000. doi: 10.1200/JCO.2010.29.8315.
    1. Ruland CM, Holte HH, Røislien J, Heaven C, Hamilton GA, Kristiansen J, Sandbaek H, Kvaløy SO, Hasund L, Ellison MC. Effects of a computer-supported interactive tailored patient assessment tool on patient care, symptom distress, and patients' need for symptom management support: a randomized clinical trial. J Am Med Inform Assoc. 2010;17(4):403–10. doi: 10.1136/jamia.2010.005660.
    1. Kearney N, McCann L, Norrie J, Taylor L, Gray P, McGee-Lennon M, Sage M, Miller M, Maguire R. Evaluation of a mobile phone-based, advanced symptom management system (ASyMS) in the management of chemotherapy-related toxicity. Support Care Cancer. 2009 Apr;17(4):437–44. doi: 10.1007/s00520-008-0515-0.
    1. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004 Feb 15;22(4):714–24. doi: 10.1200/JCO.2004.06.078.
    1. Gilbert JE, Howell D, King S, Sawka C, Hughes E, Angus H, Dudgeon D. Quality improvement in cancer symptom assessment and control: the Provincial Palliative Care Integration Project (PPCIP) J Pain Symptom Manage. 2012 Apr;43(4):663–78. doi: 10.1016/j.jpainsymman.2011.04.028.
    1. Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, Schrag D. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. J Am Med Assoc. 2017 Jun 04;18(2):197–198. doi: 10.1001/jama.2017.7156.
    1. Nekolaichuk CL, Bruera E, Spachynski K, MacEachern T, Hanson J, Maguire TO. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med. 1999 Jul;13(4):311–23.
    1. Lobchuk MM, Degner LF. Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. J Clin Oncol. 2002 Aug 15;20(16):3495–507. doi: 10.1200/JCO.2002.01.153.
    1. Kutner JS, Bryant LL, Beaty BL, Fairclough DL. Symptom distress and quality-of-life assessment at the end of life: the role of proxy response. J Pain Symptom Manage. 2006 Oct;32(4):300–10. doi: 10.1016/j.jpainsymman.2006.05.009.
    1. Gustafson D, Wise M, Bhattacharya A, Pulvermacher A, Shanovich K, Phillips B, Lehman E, Chinchilli V, Hawkins R, Kim J. The effects of combining Web-based eHealth with telephone nurse case management for pediatric asthma control: a randomized controlled trial. J Med Internet Res. 2012;14(4):e101. doi: 10.2196/jmir.1964.
    1. Gustafson DH, Hawkins R, McTavish F, Pingree S, Chen WC, Volrathongchai K, Stengle W, Stewart JA, Serlin RC. Internet-based interactive support for cancer patients: are integrated systems better? J Commun. 2008 Jun;58(2):238–257. doi: 10.1111/j.1460-2466.2008.00383.x.
    1. Gustafson DH, Hawkins RP, Boberg EW, McTavish F, Owens B, Wise M, Berhe H, Pingree S. CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved. Int J Med Inform. 2002 Nov 12;65(3):169–77.
    1. Gustafson DH, McTavish FM, Chih M, Atwood AK, Johnson RA, Boyle MG, Levy MS, Driscoll H, Chisholm SM, Dillenburg L, Isham A, Shah D. A smartphone application to support recovery from alcoholism: a randomized clinical trial. JAMA Psychiatry. 2014 May;71(5):566–72. doi: 10.1001/jamapsychiatry.2013.4642.
    1. Gustafson DH, DuBenske LL, Namkoong K, Hawkins R, Chih M, Atwood AK, Johnson R, Bhattacharya A, Carmack CL, Traynor AM, Campbell TC, Buss MK, Govindan R, Schiller JH, Cleary JF. An eHealth system supporting palliative care for patients with non-small cell lung cancer: a randomized trial. Cancer. 2013 May 1;119(9):1744–51. doi: 10.1002/cncr.27939. doi: 10.1002/cncr.27939.
    1. DuBenske LL, Gustafson DH, Shaw BR, Cleary JF. Web-based cancer communication and decision making systems: connecting patients, caregivers, and clinicians for improved health outcomes. Med Decis Making. 2010;30(6):732–44. doi: 10.1177/0272989X10386382.
    1. Chih M, DuBenske LL, Hawkins RP, Brown RL, Dinauer SK, Cleary JF, Gustafson DH. Communicating advanced cancer patients' symptoms via the Internet: a pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliat Med. 2013 Jun;27(6):533–43. doi: 10.1177/0269216312457213.
    1. Dubenske LL, Chih M, Dinauer S, Gustafson DH, Cleary JF. Development and implementation of a clinician reporting system for advanced stage cancer: initial lessons learned. J Am Med Inform Assoc. 2008;15(5):679–86. doi: 10.1197/jamia.M2532.
    1. Hui D, Glitza I, Chisholm G, Yennu S, Bruera E. Attrition rates, reasons, and predictive factors in supportive care and palliative oncology clinical trials. Cancer. 2013 Mar 01;119(5):1098–105. doi: 10.1002/cncr.27854. doi: 10.1002/cncr.27854.
    1. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6–9.
    1. Serlin RC, Mendoza TR, Nakamura Y, Edwards KR, Cleeland CS. When is cancer pain mild, moderate or severe? Grading pain severity by its interference with function. Pain. 1995 May;61(2):277–84.
    1. Hintze J. NCSS-wpengine. Kaysville, UT: Number Cruncher Statistical Systems Software (NCSS), LLC; 2007. [2017-08-09]. NCSS 2007 user guide .
    1. Mehta C, Patel N. StatXact 5. Cambridge, MA: Cytel Software Corporation; 2001.
    1. Miettinen O, Nurminen M. Comparative analysis of two rates. Stat Med. 1985;4(2):213–26.
    1. Chan IS, Zhang Z. Test-based exact confidence intervals for the difference of two binomial proportions. Biometrics. 1999 Dec;55(4):1202–9.
    1. Marascuilo L, Serlin R. Tests and contrasts for comparing change parameters for a multiple sample McNemar data model. Br J Math Stat Psychol. 1979;32(1):105–112. doi: 10.1111/j.2044-8317.1979.tb00755.x.
    1. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988.
    1. Worth A, Boyd K, Kendall M, Heaney D, Macleod U, Cormie P, Hockley J, Murray S. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals. Br J Gen Pract. 2006 Jan;56(522):6–13.
    1. Haley WE, Brown SL, Levine EG. Family caregiver appraisals of patient behavioral disturbance in senile dementia. Clin Gerontol. 1987 Sep 30;6(4):25–34. doi: 10.1300/J018v06n04_04.
    1. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12(3):240–9.

Source: PubMed

Спонсоры и соавторы

Заболевания

Медикаментозные вмешательства

Подписаться