Self-management of patients with advanced cancer: A systematic review of experiences and attitudes

Sophie I van Dongen, Kim de Nooijer, Jane M Cramm, Anneke L Francke, Wendy H Oldenmenger, Ida J Korfage, Frederika E Witkamp, Rik Stoevelaar, Agnes van der Heide, Judith Ac Rietjens, Sophie I van Dongen, Kim de Nooijer, Jane M Cramm, Anneke L Francke, Wendy H Oldenmenger, Ida J Korfage, Frederika E Witkamp, Rik Stoevelaar, Agnes van der Heide, Judith Ac Rietjens

Abstract

Background: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention.

Aim: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management.

Design: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting.

Data sources: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019).

Results: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles).

Conclusion: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Keywords: Cancer; integrative oncology; nursing; palliative care; quality of life; self-care; self-management; systematic review.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Process of study selection (PRISMA flowchart).

References

    1. Rainbird K, Perkins J, Sanson-Fisher R, et al. The needs of patients with advanced, incurable cancer. Br J Cancer 2009; 101(5): 759–764.
    1. Kirkova J, Rybicki L, Walsh D, et al. Symptom prevalence in advanced cancer: age, gender, and performance status interactions. Am J Hosp Palliat Care 2012; 29(2): 139–145.
    1. Rosenstein DL. Depression and end-of-life care for patients with cancer. Dialogues Clin Neurosci 2011; 13(1): 101–108.
    1. Teunissen SC, Wesker W, Kruitwagen C, et al. Symptom prevalence in patients with incurable cancer: a systematic review. J Pain Symptom Manage 2007; 34(1): 94–104.
    1. Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population, Board on Health Care Services and Institute of Medicine. Delivering high-quality cancer care: charting a new course for a system in crisis (ed Levit L, Balogh E, Nass S, et al.). Washington, DC: National Academies Press, 2013,
    1. Henselmans I, Smets EMA, Van Laarhoven HW. Decision making about treatment for advanced cancer: influencing wisely? JAMA Oncol 2015; 1(8): 1169.
    1. Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the Global Burden of Disease Study. JAMA Oncol 2017; 3(4): 524–548.
    1. Foster C, Calman L, Richardson A, et al. Improving the lives of people living with and beyond cancer: generating the evidence needed to inform policy and practice. J Cancer Policy 2018; 15: 92–95.
    1. Baker A. Book: crossing the quality chasm: a new health system for the 21st century. BMJ 2001; 323(7322): 1192–1192.
    1. Barlow J, Wright C, Sheasby J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 2002; 48(2): 177–187.
    1. Corbin J, Strauss A. Unending work and care: managing chronic illness at home. San Francisco, CA: Jossey-Bass, 1988.
    1. Grady PA, Gough LL. Self-management: a comprehensive approach to management of chronic conditions. Am J Public Health 2014; 104(8): e25–e31.
    1. Koch T, Jenkin P, Kralik D. Chronic illness self-management: locating the ‘self’. J Adv Nurs 2004; 48(5): 484–492.
    1. Kralik D, Koch T, Price K, et al. Chronic illness self-management: taking action to create order. J Clin Nurs 2004; 13(2): 259–267.
    1. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 2003; 26(1): 1–7.
    1. Miller WR, Lasiter S, Bartlett Ellis R, et al. Chronic disease self-management: a hybrid concept analysis. Nurs Outlook 2015; 63(2): 154–161.
    1. Udlis KA. Self-management in chronic illness: concept and dimensional analysis. J Nurs Healthc Chronic Illn 2011; 3(2): 130–139.
    1. van Houtum L, Rijken M, Heijmans M, et al. Patient-perceived self-management tasks and support needs of people with chronic illness: generic or disease specific? Ann Behav Med 2015; 49(2): 221–229.
    1. Budhwani S, Wodchis WP, Zimmermann C, et al. Self-management, self-management support needs and interventions in advanced cancer: a scoping review. BMJ Support Palliat Care 2018; 9: 12–25.
    1. Johnston B, McGill M, Milligan S, et al. Self care and end of life care in advanced cancer: literature review. Eur J Oncol Nurs 2009; 13(5): 386–398.
    1. Conway A, O’Donnell C, Yates P. The effectiveness of the nurse care coordinator role on patient-reported and health service outcomes: a systematic review. Eval Health Prof 2017: 163278717734610.
    1. Johnston B, Rogerson L, Macijauskiene J, et al. An exploration of self-management support in the context of palliative nursing: a modified concept analysis. BMC Nurs 2014; 13: 21.
    1. Hochstenbach LMJ, Courtens AM, Zwakhalen SMG, et al. Co-creative development of an eHealth nursing intervention: self-management support for outpatients with cancer pain. Appl Nurs Res 2017; 36: 1–8.
    1. van Hooft SM, Dwarswaard J, Jedeloo S, et al. Four perspectives on self-management support by nurses for people with chronic conditions: a Q-methodological study. Int J Nurs Stud 2015; 52(1): 157–166.
    1. Whitehead L, Jacob E, Towell A, et al. The role of the family in supporting the self-management of chronic conditions: a qualitative systematic review. J Clin Nurs 2018; 27(1–2): 22–30.
    1. Sandelowski M, Voils CI, Barroso J. Defining and designing mixed research synthesis studies. Res Sch 2006; 13(1): 29.
    1. Grant MJ, Booth A. A typology of reviews: an analysis of 14 review types and associated methodologies. Health Info Libr J 2009; 26(2): 91–108.
    1. Swartz MK. The PRISMA statement: a guideline for systematic reviews and meta-analyses. J Pediatr Health Care 2011; 25(1): 1–2.
    1. Canadian Cancer Society. Advanced cancer, 2013,
    1. Cochrane Community. About Covidence, 2018,
    1. Dutch Cochrane Centre. Guideline for methodological quality assessment of observational studies, 2010. [in Dutch],
    1. Snijder CA, te Velde E, Roeleveld N, et al. Occupational exposure to chemical substances and time to pregnancy: a systematic review. Hum Reprod Update 2012; 18(3): 284–300.
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19(6): 349–357.
    1. Lockwood C, Oh EG. Systematic reviews: guidelines, tools and checklists for authors. Nurs Health Sci 2017; 19(3): 273–277.
    1. Dixon D, King D, Matosevic T, et al. Equity in the provision of palliative care in the UK: review of evidence. London: Personal Social Services Research Unit, London School of Economics and Political Science, 2015.
    1. Alfano ACC, Paiva CE, Rugno FC, et al. Biologically based therapies are commonly self-prescribed by Brazilian women for the treatment of advanced breast cancer or its symptoms. Support Care Cancer 2014; 22(5): 1303–1311.
    1. Get-Kong S, Hanucharurnkul S, McCorkle R, et al. Symptom experience, palliative care and spiritual well-being among Thais with advanced cancer. Pacific Rim Int J Nurs Res 2010; 14(3): 219–234.
    1. He Y, Jian H, Yan M, et al. Coping, mood and health-related quality of life: a cross-sectional study in Chinese patients with advanced lung cancer. BMJ Open 2019; 9(5): e023672.
    1. Campling N, Richardson A, Mulvey M, et al. Self-management support at the end of life: patients’, carers’ and professionals’ perspectives on managing medicines. Int J Nurs Stud 2017; 76: 45–54.
    1. Eliott JA, Kealey CP, Olver IN. (Using) complementary and alternative medicine: the perceptions of palliative patients with cancer. J Palliat Med 2008; 11(1): 58–67.
    1. Erol O, Unsar S, Yacan L, et al. Pain experiences of patients with advanced cancer: a qualitative descriptive study. Eur J Oncol Nurs 2018; 33: 28–34.
    1. Liu Q, Gao LL, Dai YL, et al. Breakthrough pain: a qualitative study of patients with advanced cancer in northwest China. Pain Manag Nurs 2018; 19(5): 506–515.
    1. Norris RL, Liu Q, Bauer-Wu S. Age and functional ability are associated with self-care practices used by women with metastatic breast cancer: an exploratory study. J Nurs Healthc Chronic Illn 2009; 1(1): 71–77.
    1. Bennett BM, Laidlaw TM, Dwivedi P, et al. A qualitative study of the experience of self-hypnosis or Johrei in metastatic breast cancer using interpretative phenomenological analysis. Contemp Hypn 2006; 23(3): 127–140.
    1. Lewis S, Willis K, Yee J, et al. Living well? strategies used by women living with metastatic breast cancer. Qual Health Res 2016; 26(9): 1167–1179.
    1. Pacsi AL. Understanding the experience of Dominican American women living with late-stage breast cancer: a qualitative study. Hisp Health Care Int 2015; 13(2): 86–96.
    1. Schulman-Green D, Bradley EH, Knobf MT, et al. Self-management and transitions in women with advanced breast cancer. J Pain Symptom Manage 2011; 42(4): 517–525.
    1. Levy A, Cartwright T. Men’s strategies for preserving emotional well-being in advanced prostate cancer: an interpretative phenomenological analysis. Psychol Health 2015; 30(10): 1164–1182.
    1. Hansen L, Rosenkranz SJ, Vaccaro GM, et al. Patients with hepatocellular carcinoma near the end of life: a longitudinal qualitative study of their illness experiences. Cancer Nurs 2015; 38(4): E19–E27.
    1. Sand AM, Harris J, Rosland JH. Living with advanced cancer and short life expectancy: patients’ experiences with managing medication. J Palliat Care 2009; 25(2): 85–91.
    1. Correa-Velez I, Clavarino A, Eastwood H. Surviving, relieving, repairing, and boosting up: reasons for using complementary/alternative medicine among patients with advanced cancer: a thematic analysis. J Palliat Med 2005; 8(5): 953–961.
    1. Stephens M, McKenzie H, Jordens CFC. The work of living with a rare cancer: multiple myeloma. J Adv Nurs 2014; 70(12): 2800–2809.
    1. Hughes ND, Closs SJ, Flemming K, et al. Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals. Support Care Cancer 2016; 24(12): 5049–5057.
    1. Hopkinson JB. How people with advanced cancer manage changing eating habits. J Adv Nurs 2007; 59(5): 454–462.
    1. Johnston BM, Milligan S, Foster C, et al. Self-care and end of life care – patients’ and carers’ experience a qualitative study utilising serial triangulated interviews. Support Care Cancer 2012; 20(8): 1619–1627.
    1. Bennett MI, Closs SJ, Chatwin J. Cancer pain management at home (I): do older patients experience less effective management than younger patients? Support Care Cancer 2009; 17(7): 787–792.
    1. Chan R, Yates P, McCarthy AL. Fatigue self-management behaviors in patients with advanced cancer: a prospective longitudinal survey. Oncol Nurs Forum 2016; 43(6): 762–771.
    1. Correa-Velez I, Clavarino A, Barnett AG, et al. Use of complementary and alternative medicine and quality of life: changes at the end of life. Palliat Med 2003; 17(8): 695–703.
    1. La Cour K, Nordell K, Josephsson S. Everyday lives of people with advanced cancer: activity, time, location, and experience. Occup Part Heal 2009; 29(4): 154–162.
    1. Devik SA, Enmarker I, Wiik GB, et al. Meanings of being old, living on one’s own and suffering from incurable cancer in rural Norway. Eur J Oncol Nurs 2013; 17(6): 781–787.
    1. Gibbins J, Bhatia R, Forbes K, et al. What do patients with advanced incurable cancer want from the management of their pain? A qualitative study. Palliat Med 2014; 28(1): 71–78.
    1. Johansson CM, Axelsson B, Danielson E. Living with incurable cancer at the end of life – patients’ perceptions on quality of life. Cancer Nurs 2006; 29(5): 391–399.
    1. McPherson CJ, Hadjistavropoulos T, Devereaux A, et al. A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home. BMC Palliat Care 2014; 13: 39.
    1. National Center for Complementary and Integrative Health. Complementary, alternative, or integrative health: what’s in a name?, 2018,
    1. Thomas J, Retsas A. Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal cancer. Int J Nurs Stud 1999; 36(3): 191–201.
    1. Peoples H, Brandt Å, Waehrens EE, et al. Managing occupations in everyday life for people with advanced cancer living at home. Scand J Occup Ther 2017; 24(1): 57–64.
    1. Baile WF, Palmer JL, Bruera E, et al. Assessment of palliative care cancer patients’ most important concerns. Support Care Cancer 2011; 19(4): 475–481.
    1. Andrews KL, Jones SC, Mullan J. Asthma self management in adults: a review of current literature. Collegian 2014; 21(1): 33–41.
    1. Axon DR, Patel MJ, Martin JR, et al. Use of multidomain – management strategies by community dwelling adults with chronic pain: evidence from a systematic review. Scand J Pain 2019; 19(1): 9–23.
    1. Clark NM, Becker MH, Janz NK, et al. Self-management of chronic disease by older adults: a review and questions for research. J Aging Health 1991; 3(1): 3–27.
    1. May S. Self-management of chronic low back pain and osteoarthritis. Nat Rev Rheumatol 2010; 6(4): 199.
    1. Guo P, Harris R. The effectiveness and experience of self-management following acute coronary syndrome: a review of the literature. Int J Nurs Stud 2016; 61: 29–51.
    1. van Houtum L, Rijken M, Heijmans M, et al. Self-management support needs of patients with chronic illness: do needs for support differ according to the course of illness? Patient Educ Couns 2013; 93(3): 626–632.
    1. Bailey DE, Jr, Steinhauser K, Hendrix C, et al. Pairing self-management with palliative care: intervening in life-limiting illness. J Nurs Healthc Chronic Illn 2011; 3(1): 1–3.
    1. Ebenau A, van Gurp J, Hasselaar J. Life values of elderly people suffering from incurable cancer: a literature review. Patient Educ Couns 2017; 100(10): 1778–1786.
    1. Kazimierczak KA, Skea ZC, Dixon-Woods M, et al. Provision of cancer information as a ‘support for navigating the knowledge landscape’: findings from a critical interpretive literature synthesis. Eur J Oncol Nurs 2013; 17(3): 360–369.
    1. Wakefield D, Bayly J, Selman LE, et al. Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: a systematic review using critical interpretive synthesis. Palliat Med 2018; 32(8): 1288–1304.
    1. Zwakman M, Jabbarian LJ, van Delden J, et al. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med 2018; 32(8): 1305–1321.
    1. Lustman PJ, Anderson RJ, Freedland KE, et al. Depression and poor glycemic control: a meta-analytic review of the literature. Diabetes Care 2000; 23(7): 934–942.
    1. Schaffler J, Leung K, Tremblay S, et al. The effectiveness of self-management interventions for individuals with low health literacy and/or low income: a descriptive systematic review. J Gen Intern Med 2018; 33(4): 510–523.
    1. Mackey LM, Doody C, Werner EL, et al. Self-management skills in chronic disease management: what role does health literacy have? Med Decis Making 2016; 36(6): 741–759.
    1. Bandura A. Self-efficacy: the exercise of control. New York: W H Freeman; Times Books; Henry Holt & Co, 1997, pp. ix, 604.
    1. Slev VN, Pasman HRW, Eeltink CM, et al. Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer: an online focus group study among nurses. BMC Palliat Care 2017; 16(1): 55.
    1. Johnson JO, Sulmasy DP, Nolan MT. Patients’ experiences of being a burden on family in terminal illness. J Hosp Palliat Nurs 2007; 9(5): 264–269.
    1. McPherson CJ, Wilson KG, Murray MA. Feeling like a burden to others: a systematic review focusing on the end of life. Palliat Med 2007; 21(2): 115–128.
    1. Howell D, Harth T, Brown J, et al. Self-management education interventions for patients with cancer: a systematic review. Support Care Cancer 2017; 25(4): 1323–1355.
    1. Walshe C, Roberts D. Peer support for people with advanced cancer: a systematically constructed scoping review of quantitative and qualitative evidence. Curr Opin Support Palliat Care 2018; 12(3): 308–322.

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