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

Tim Luckett; Patricia M Davidson; Anna Green; Natalie Marie; Mary-Rose Birch; John Stubbs; Jane Phillips; Meera Agar; Frances Boyle; Melanie Lovell

doi:10.1017/S1478951518000792

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

Palliat Support Care. 2019 Aug;17(4):472-478. doi: 10.1017/S1478951518000792.

Authors

Tim Luckett¹, Patricia M Davidson^{1

2}, Anna Green¹, Natalie Marie¹, Mary-Rose Birch³, John Stubbs⁴, Jane Phillips¹, Meera Agar^{1

5

6}, Frances Boyle^{7

8}, Melanie Lovell^{3

8}

Affiliations

¹ Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia.
² School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
³ HammondCare, Sydney, New South Wales, Australia.
⁴ CanSpeak, Sydney, New South Wales, Australia.
⁵ Ingham Institute for Applied Medical Research, Sydney, New South Wales, Australia.
⁶ South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia.
⁷ Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital, Sydney, New South Wales, Australia.
⁸ Sydney Medical School, The University of Sydney, Sydney, NSW, Australia.

PMID: 31010454
DOI: 10.1017/S1478951518000792

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 pain; Patient education; Self-efficacy; Self-management.

MeSH terms

Cancer Pain / therapy*
Health Services Accessibility / standards*
Health Services Accessibility / statistics & numerical data
Humans
Neoplasms / complications
Neoplasms / psychology
Pain Management / methods
Program Development / methods
Self-Management / methods
Self-Management / psychology*
Self-Management / statistics & numerical data
Surveys and Questionnaires