Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-28T00:04:42.492Z Has data issue: false hasContentIssue false
  • English
  • Français

Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care

Published online by Cambridge University Press:  23 April 2019

Tim Luckett ,
Patricia M. Davidson ,
Anna Green ,
Natalie Marie ,
Mary-Rose Birch ,
John Stubbs ,
Jane Phillips ,
Meera Agar ,
Frances Boyle  and
Melanie Lovell
Tim Luckett*
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Patricia M. Davidson
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia School of Nursing, Johns Hopkins University, Baltimore, MD, USA
Anna Green
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Natalie Marie
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Mary-Rose Birch
Affiliation:
HammondCare, Sydney, New South Wales, Australia
John Stubbs
Affiliation:
CanSpeak, Sydney, New South Wales, Australia
Jane Phillips
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Meera Agar
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia Ingham Institute for Applied Medical Research, Sydney, New South Wales, Australia South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia
Frances Boyle
Affiliation:
Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital, Sydney, New South Wales, Australia Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
Melanie Lovell
Affiliation:
HammondCare, Sydney, New South Wales, Australia Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
*
Author for correspondence: Tim Luckett, BSc, PhD, University of Technology Sydney, Faculty of Health, Building 10, Level 7, 235-253 Jones St, Ultimo, NSW 2007, Australia. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.

Method

The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.

Result

Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.

Significance of results

Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.

Keywords

Cancer painPatient educationSelf-efficacySelf-management
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 472 - 478
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Agar, M, Davidson, PM, et al. (2012) Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of oncologists and haematologists. Poster presented at the MASCC/ISOO International Symposium on Supportive Care in Cancer. New York, 28th–30th June.Google Scholar
Aubin, M, Giguere, A, Martin, M, et al. (2012) Interventions to improve continuity of care in the follow-up of patients with cancer. Cochrane Database of Systematic Reviews 7, CD007672.Google Scholar
Baker, TA, O'Connor, ML, and Krok, JL (2014) Experience and knowledge of pain management in patients receiving outpatient cancer treatment: What do older adults really know about their cancer pain? Pain Medicine 15(1), 52–60.Google Scholar
Bodenheimer, T, Lorig, K, Holman, H, et al. (2002) Patient self-management of chronic disease in primary care. JAMA 288(19), 2469–2475.Google Scholar
Brink-Huis, A, van Achterberg, T, Schoonhoven, L, et al. (2008) Pain management: A review of organisation models with integrated processes for the management of pain in adult cancer patients. Journal of Clinical Nursing 17(15), 1986–2000.Google Scholar
Cancer Council Australia (2013) Overcoming cancer pain: A guide for people with cancer, their families and friends. Available at: http://www.cancercouncil.com.au/wp-content/uploads/2014/01/Can487-Overcoming-Pain-NSW-Lores2.pdf.Google Scholar
Clayton, J, Phillips, J, et al. on behalf of the STOP Pain Project Team, ImPaCCT (Improving Palliative Care through Clinical Trials) and HammondCare (2012) STOP Pain Project: A collaborative, interdisciplinary project to improve the person-centredness of assessment and management of cancer pain. Poster presentation at the International Psycho-Oncology Society 14th World Congress. Brisbane, Australia.Google Scholar
Craig, P, Dieppe, P, Macintyre, S, et al. (2008) Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ 337, a1655.Google Scholar
Cresswell, J (2003) Research design: Qualitative, quantitative, and mixed methods approaches. Thousand Oaks, CA: Sage.Google Scholar
Davies, P, Walker, AE, and Grimshaw, JM (2010) A systematic review of the use of theory in the design of guideline dissemination and implementation strategies and interpretation of the results of rigorous evaluations. Implementation Science 5, 14.Google Scholar
Deandrea, S, Montanari, M, Moja, L, et al. (2008) Prevalence of undertreatment in cancer pain. A review of published literature. Annals of Oncology 19(12), 1985–1991.Google Scholar
Edmond, SN, Shelby, RA, Kimmick, GG, et al. (2013) Symptom communication in breast cancer: Relationships of holding back and self-efficacy for communication to symptoms and adjustment. Journal of Psychosocial Oncology 31(6), 698–711.Google Scholar
Flemming, K (2010) The use of morphine to treat cancer-related pain: A synthesis of quantitative and qualitative research. Journal of Pain & Symptom Management 39(1), 139–154.Google Scholar
Foley, KM (2011) How well is cancer pain treated? Palliative Medicine 25, 398–401.Google Scholar
Improving Palliative Care through Clinical Trials (ImpaCCT) (2013) Cancer pain management in adults: Evidence-based clinical practice guidelines adapted for use in Australia. Available at: http://wiki.cancer.org.au/australia/Guidelines:Cancer_pain_management.Google Scholar
Jacobsen, R, Liubarskiene, Z, Moldrup, C, et al. (2009) Barriers to cancer pain management: A review of empirical research. Medicina (Kaunas, Lithuania) 45, 427–433.Google Scholar
Jerant, A, Franks, P, and Kravitz, RL (2011) Associations between pain control self-efficacy, self-efficacy for communicating with physicians, and subsequent pain severity among cancer patients. Patient Education And Counseling 85(2), 275–280.Google Scholar
Ko, H, Turner, T, Jones, C, et al. (2010) Patient-held medical records for patients with chronic disease: A systematic review. Quality & Safety in Health Care 19(5), e41.Google Scholar
Kowal, J, Wilson, KG, McWilliams, LA, et al. (2012) Self-perceived burden in chronic pain: Relevance, prevalence, and predictors. Pain 153(8), 1735–1741.Google Scholar
Kravitz, RL, Tancredi, DJ, Grennan, T, et al. (2011) Cancer Health Empowerment for Living without Pain (Ca-HELP): Effects of a tailored education and coaching intervention on pain and impairment. Pain 7, 1572–1582.Google Scholar
Liauw, W, Davidson, PM, et al. (2012) Improving assessment and management of adult cancer pain: A nationwide survey of oncologists and haematologists. Poster presented at the National Prescribing Service's National Medicines Symposium. Sydney, Australia, 24th–25th May.Google Scholar
Lorig, KR and Holman, H (2003) Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26(1), 1–7.Google Scholar
Lovell, M (2013a) Implementation forum for cancer pain assessment and management guidelines. Oral presentation at the 12th Australian Palliative Care Conference. Canberra, Australia, 3rd–6th September.Google Scholar
Lovell, M (2013b) Palliative cancer care. Oral presentation at the Pharmaceutical Society of Australia Clinical and Practice Expo. Sydney, Australia.Google Scholar
Lovell, M, Agar, M, Luckett, T, et al. (2013a) Australian Survey of Current Practice and Guideline Use in Adult Cancer Pain Assessment and Management: Perspectives of palliative care physicians. Journal of Palliative Medicine 16(11), 1403–1409.Google Scholar
Lovell, M, Birch, M, Luckett, T, et al. (2018). Screening and audit as service-level strategies to support implementation of Australian guidelines for cancer pain management in adults: A feasibility study. Pain Management Nursing Accepted May 13th 2018.Google Scholar
Lovell, M, Agar, M, Luckett, T, et al. (2013b) Implementation forum for cancer pain assessment and management guidelines. Breakfast session presented at the 40th Annual Scientific Meeting of the Clinical Oncological Society of Australia. Adelaide, Australia, 12th–14th November.Google Scholar
Lovell, M, Davidson, PM, et al. (2012a) Assessment & management of adult cancer pain: Lessons from a systematic review & synthesis of qualitative studies. Poster presented at the Australian Pain Society 32nd Annual Scientific Meeting. Melbourne, Australia, 1st–4th April.Google Scholar
Lovell, M, Davidson, PM, et al. (2012b) Assessment & management of adult cancer pain: Lessons from a systematic review & synthesis of qualitative studies. Poster presented at the 7th World Research Congress of the European Association of Palliative Care. Trondheim, Norway, 7th–9th June.Google Scholar
Lovell, M, Phillips, J, et al. (2013c) Patient-centred approaches to cancer pain. Topical session presented at the Australian Pain Society's 33rd Annual Scientific Meeting. Canberra, Australia, 17th–20th March.Google Scholar
Lovell, M, Luckett, T, Boyle, F, et al. (2014) Patient education, coaching and self-management for cancer pain. Journal of Clinical Oncology 32(16), 1712–1720.Google Scholar
Lovell, M, Luckett, T, Boyle, F, et al. (2015) Adaptation of international guidelines on assessment and management of cancer pain for the Australian context. Asia-Pacific Journal of Clinical Oncology 11(2), 170–177.Google Scholar
Lovell, M, Agar, M, et al. (2013d) What will it take to improve cancer pain outcomes? Developing a dissemination and implementation strategy to promote a person-centred clinical pathway for cancer pain. Workshop presented at the Cancer Nurses Society of Australia, 16th Winter Congress. Brisbane, Australia, 25th–27th June.Google Scholar
Lovell, MR, Forder, P, Stockler, M, et al. (2010) A randomised controlled trial of a standardised educational intervention for patients with cancer pain. Journal of Pain and Symptom Management 40(1), 49–59.Google Scholar
Luckett, T, Davidson, PM, Boyle, F, et al. (2013a) Australian survey of current practice and guideline use in adult cancer pain assessment and management: Perspectives of palliative care physicians. Journal of Palliative Medicine 16(11), 1403–1409.Google Scholar
Luckett, T, Davidson, PM, Green, A, et al. (2013b) Assessment and management of adult cancer pain: A systematic review and synthesis of recent qualitative studies aimed at developing insights for managing barriers and optimizing facilitators within a comprehensive framework of patient care. Journal of Pain and Symptom Management 46(2), 229–253.Google Scholar
Luckett, T, Agar, M, et al. (2014) Triangulation of methods as a resource-efficient approach to developing complex interventions to support implementation of evidence-based guidelines: the example of cancer pain. Poster presentation, International Forum on Quality and Safety in Healthcare Conference. Paris, France.Google Scholar
Luckett, T., Phillips, J., Agar, M, et al. (2018) Protocol for a phase III pragmatic stepped wedge cluster randomised controlled trial comparing the effectiveness and cost-effectiveness of screening and guidelines with, versus without, implementation strategies for improving pain in adults with cancer attending outpatient oncology and palliative care services: The Stop Cancer PAIN trial. BMC Health Services Research 18(1), 558.Google Scholar
Marie, N, Luckett, T, Davidson, PM, et al. (2013) Optimal patient education for cancer pain: A systematic review and theory-based meta-analysis. Supportive Care in Cancer 21(12), 3529–3537.Google Scholar
Marks, R, Allegrante, JP, and Lorig, K (2005) A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (part II). Health Promotion Practice 6(2), 148–156.Google Scholar
McCorkle, R, Ercolano, E, Lazenby, M, et al. (2011) Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians 61(1), 50–62.Google Scholar
Medical Research Council (2006) Developing and evaluating complex interventions: new guidance. London, MRC.Google Scholar
Michie, S, van Stralen, MM, and West, R (2011) The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science 6, 42.Google Scholar
Morren, M, van Dulmen, S, Ouwerkerk, J, et al. (2009) Compliance with momentary pain measurement using electronic diaries: A systematic review. Eur J Pain 13(4), 354–365.Google Scholar
National Comprehensive Cancer Network (2011) NCCN Clinical Practice Guidelines in Oncology: Adult cancer pain. New York, NCCN.Google Scholar
National Institute for Health and Care Excellence (2012) Managing pain with strong opioids in people with advanced, progressive disease. Available at: http://publications.nice.org.uk/managing-pain-with-strong-opioids-in-people-with-advanced-progressive-disease-ifp140/about-this-information.Google Scholar
NHS Quality Improvement Scotland (2004) Best practice statement: The management of pain in patients with cancer. Edinburgh, NHS Quality Improvement Scotland.Google Scholar
Oldenmenger, WH, Sillevis Smitt, PAE, van Dooren, S, et al. . (2009) A systematic review on barriers hindering adequate cancer pain management and interventions to reduce them: A critical appraisal. European Journal of Cancer 45(8), 1370–1380.Google Scholar
Phillips, J, Keall, R, et al. , on behalf of the STOP Pain Investigators (2012a) Nurses working in community, palliative and aged care settings perceive fewer barriers to cancer pain management than acute care setting: findings of a national survey. Poster presentation at the NSW State Palliative Care Conference. Dubbo, Australia, 31 October–2 November.Google Scholar
Phillips, J, Davidson, PM, et al. (2012b) Stop Pain Project: A dual health professional and patient pathway to manage pain in individuals with cancer. Oral presentation at the Cancer Nurses Society of Australia's 15th Winter Congress. Hobart, Australia, 26th–28th July.Google Scholar
Phillips, JL and Currow, DC (2010) Cancer as a chronic disease. Collegian 17, 47–50.Google Scholar
Phillips, JL, Lovell, M, Luckett, T, et al. (2015) Australian survey of current practice and guideline use in adult cancer pain assessment and management: The community nurse perspective. Collegian 22(1), 33–41.Google Scholar
Porter, LS, Keefe, FJ, Garst, J, et al. (2008) Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: Associations with symptoms and distress. PAIN 137(2), 306–315.Google Scholar
Price, M, Bellwood, P, Kitson, N, et al. (2015) Conditions potentially sensitive to a personal health record (PHR) intervention, a systematic review. BioMed Central Medical Informatics and Decision Making Medical Informatics and Decision Making 15, 32.Google Scholar
Ripamonti, CI, Bandieri, E, Roila, F, et al. (2011) Management of cancer pain: ESMO Clinical Practice Guidelines. Annals of Oncology 22(suppl 6), vi69–vi77.Google Scholar
Scottish Intercollegiate Network (2008) Control of pain in patients with cancer: A national clinical guideline. Edinburgh: SIGN.Google Scholar
van den Beuken-van Everdingen, MH, Hochstenbach, LM.Joosten, EA, et al. (2016) Update on prevalence of pain in patients with cancer: Systematic review and meta-analysis. Journal of Pain Symptom Management 51(6), 1070–1090.Google Scholar
van den Beuken-van Everdingen, MHJ, de Rijke, JM, Kessels, AG, et al. (2007) Prevalence of pain in patients with cancer: A systematic review of the past 40 years. Annals of Oncology 18(9), 1437–1449.Google Scholar
Williams, JG, Cheung, WY, Chetwynd, N, et al. (2001) Pragmatic randomised trial to evaluate the use of patient held records for the continuing care of patients with cancer. Qualitative Health Care 10(3), 159–165.Google Scholar
Wong, KF, Charman, J, Round, T, et al. (2018) Cancer patients and primary care prescribed medications: Offering insights into symptoms, polypharmacy and multimorbidity. British Journal of General Practice 68(suppl 1).Google Scholar
World Health Organization (2002) Innovative care for chronic conditions: building blocks for action. Geneva, WHO.Google Scholar