Health and service needs, priorities and initiatives of primary health networks related to chronic pain.

BACKGROUND: Chronic pain is a major and growing public health issue. Multidisciplinary tertiary pain services cannot meet patient demand and greater involvement of primary care is needed. The aims of this study were to understand the needs and priorities of Australian primary health networks (PHNs) related to the management and secondary prevention of chronic pain; map current PHN chronic pain initiatives and identify gaps; highlight key enablers to implementation; and highlight solutions identified by PHNs to increase capacity to commission initiatives. METHODS: Mixed methods were used, including: a review of PHN needs assessments; and consultation with PHN executive-level staff and program managers from 27 out of the 28 PHNs, and the WA Primary Health Alliance (WAPHA - a state alliance between three Western Australian PHNs) via telephone interviews, online surveys, a workshop, a deliberative dialogue and email consultation. RESULTS: Chronic pain was identified as a health and/or service need by approximately half of PHNs. Barriers for PHNs to identifying chronic pain as a need or priority are highlighted. Gaps identified by the mapping included: initiatives related to the secondary prevention of chronic pain (post-surgery or post-injury), digitally enabled consumer and health professional chronic pain initiatives, and chronic pain initiatives for specific populations groups such as Aboriginal and Torres Strait Islander people. Among existing PHN practice, two exemplar evidence-based initiatives suitable for scale-up across PHNs in Australia were identified: multidisciplinary community-based pain programs, and an online health professional capacity-building initiative, Project ECHO (chronic pain). Solutions identified by PHNs to increase capacity to commission initiatives included: co-funding initiatives across different PHN funding streams, collaborative initiatives between PHNs, and co-commissioning with government and non-government partners. CONCLUSIONS: Chronic pain has been classified as a disease in itself through the World Health Organization. PHNs recognising chronic pain as a distinct condition in PHN needs analysis and data collection would lead to more dedicated funding. PHNs could do more to improve the secondary prevention and management of chronic pain. A self-identified need for greater collaboration across PHNs and co-commissioning with local and state governments and non-government partners would help to build PHN capacity.

"Listen to me, learn from me": a priority setting partnership for shaping interdisciplinary pain training to strengthen chronic pain care.

ABSTRACT: What are the care-seeking priorities of people living with chronic pain and carers and how can these shape interdisciplinary workforce training to improve high-value pain care? Phase 1: Australian people living with chronic pain (n = 206; 90% female) and carers (n = 10; 40% female) described their pain care priorities (eDelphi, round 1). A coding framework was inductively derived from 842 pain care priorities (9 categories, 52 priorities), including validation; communication; multidisciplinary approaches; holistic care; partnerships; practitioner knowledge; self-management; medicines; and diagnosis. Phase 2: In eDelphi round 2, panellists (n = 170; valid responses) rated the importance (1 = less important; 9 = more important) of the represented framework. In parallel, cross-discipline health professionals (n = 267; 75% female) rated the importance of these same priorities. Applying the RAND-UCLA method (panel medians: 1-3: "not important," 4-6: "equivocal," or 7-9: "important"), "important" items were retained where the panel median score was >7 with panel agreement ≥70%, with 44 items (84.6%) retained. Specific workforce training targets included the following: empathic validation; effective, respectful, safe communication; and ensuring genuine partnerships in coplanning personalised care. Panellists and health professionals agreed or strongly agreed (95.7% and 95.2%, respectively) that this framework meaningfully reflected the importance in care seeking for pain. More than 74% of health professionals were fairly or extremely confident in their ability to support care priorities for 6 of 9 categories (66.7%). Phase 3: An interdisciplinary panel (n = 5) mapped an existing foundation-level workforce training program against the framework, identifying gaps and training targets. Recommendations were determined for framework adoption to genuinely shape, from a partnership perspective, Australian interdisciplinary pain training.

Community-based pain programs commissioned by primary health networks: key findings from an online survey and consultation with program managers.

OBJECTIVE: There is an increasing demand for tertiary pain services, with long waiting times compounded by limited reach to regional and remote areas. Community-based pain programs are a feasible evidence-based model of care to improve access to multidisciplinary care. Australian primary health networks (PHNs) are well placed to commission pain programs to reduce the growing burden of chronic pain. The aim of this study was to support PHN decision-making by: (1) describing current PHN community-based pain programs; (2) assessing their alignment to key elements and implementation enablers of pain programs identified by an expert consensus process; and (3) describing PHN pain program adaptations during the COVID-19 pandemic. METHODS: PHN program managers of community-based pain programs (n = 9) were invited to participate in an online survey and follow-up email consultation about their pain program. Six PHN program managers (representing South Eastern NSW PHN, Nepean Blue Mountains PHN, North Western Melbourne PHN, Gold Coast PHN, Adelaide PHN and the WA Primary Health Alliance) participated in the study with three PHNs commissioning two different types of pain programs. RESULTS: PHN community-based pain programs are multidisciplinary programs underpinned by a biopsychosocial model of pain, and focus on self-management (e.g. exercise, psychological strategies) and pain education. Most PHN pain programs are group-based programs that target adults with chronic non-cancer pain, provide individual allied health referrals as required and are evaluated as part of the electronic Persistent Pain Outcomes Collaboration. Gaps include pain programs for Aboriginal and Torres Strait Islander people, and people from culturally and linguistically diverse backgrounds, with one notable exception of a PHN pain program for people from culturally and linguistically diverse and refugee backgrounds co-designed with consumers and relevant services. Programs targeting subacute pain to prevent progression to chronic pain are, with one exception, another gap area. PHN pain programs demonstrated a high level of alignment with expert-agreed key elements and implementation enablers. The COVID-19 pandemic precipitated the rapid adaptation of PHN pain programs using available methods for the delivery of digitally enabled care. CONCLUSIONS: The findings provide a greater understanding for researchers and PHN decision-makers of the key features of PHN community-based pain programs, their alignment with expert-agreed key elements and implementation enablers, the target-population gaps, and the types of program adaptations during the COVID-19 pandemic. The findings also illustrate the potential for using digitally enabled delivery methods to increase accessibility to pain programs with further research warranted.

Establishing consensus on key elements and implementation enablers of community-based pain programs to support primary health network decision making: an eDelphi study.

To address the growing burden of chronic pain, there is a need for national scale-up of community-based pain programs. Primary health networks (PHNs) are best placed to support this scale-up as commissioning bodies of health services. The aim of this eDelphi study was to establish expert consensus on best practice key elements of community-based pain programs and enablers important for program implementation and sustainability to support PHN decision making. A panel of experts was invited to complete three online survey rounds as part of a reactive eDelphi approach to provide feedback on the relevance and importance of proposed key elements and implementation enablers of community-based pain programs. Consensus of 70% agreement by experts was required for each survey round for items to remain, with comments from experts considered by the research team to agree on wording changes and the addition of new items. Ten experts (62.5%) completed all three survey rounds. Expert feedback resulted in a list of 18 best practice key elements of community-based pain program design and 14 program implementation enablers. Changes suggested by experts included the moving of items between lists, rephrasing of items and the addition of new items. The eDelphi results will serve as a resource for PHNs considering the commissioning of community-based pain programs and inform future research to assess the suitability and scalability of existing programs.

Chronic pain and cardiovascular disease prevention in primary care: a review of Australian primary health network needs assessments.

Objective Chronic pain and cardiovascular disease (CVD) have a high disease burden. This research aimed to understand whether Australian primary health networks (PHNs) are recognising the need for the prevention of these conditions by investigating what local health and service issues have been identified. Methods Separate sets of needs assessments were analysed for chronic pain and CVD for all 31 PHNs using a document analysis approach. Framework analysis was undertaken to ascertain the types of health and service issues, prevention-related issues and supporting data sources identified, as well as to quantify the number of PHNs identifying these issues. Results Fewer PHNs identified health issues for chronic pain (n = 13) compared with CVD (n = 30), with the most common being disease prevalence and burden supported by National Health Survey data. Service issues were identified by fewer than half the PHNs (n = 13 for each disease), which were largely informed by stakeholder consultation and related to service integration, service accessibility and health professional training. Prevention-related issues were frequently identified for CVD (n = 26), but not chronic pain (n = 3). Conclusions This paper highlights the need for a greater focus on chronic pain- and CVD-related issues by PHNs. This could be supported nationally by recognising chronic pain and risk factors in national datasets and PHN performance frameworks, and locally via greater stakeholder consultation to inform PHN population health planning. What is known about the topic? Chronic pain and CVD are the two leading causes of total disease burden in Australia. PHNs are well positioned to address prevention locally through population health planning, supporting primary healthcare providers, health care integration and coordination and commissioning necessary services. What does this paper add? This paper highlights gaps in data availability, the proportion of PHNs identifying local service issues for both chronic pain and CVD and health- and prevention-related issues for chronic pain. What are the implications for practitioners? Although PHNs are constrained by government priorities and funding, greater stakeholder consultation is one potentially promising strategy to overcome local data gaps to identifying and prioritising chronic pain and CVD prevention.

Primary care initiatives focused on the secondary prevention and management of chronic pain: a scoping review of the Australian literature.

The aim of this scoping review was to identify initiatives focused on the secondary prevention and management of chronic pain in Australian primary care to understand options available to Primary Health Networks and to identify evidence gaps. The Medline, EMBASE, Cumulative Index to Nursing and Allied Health Literature and Cochrane databases, as well as relevant websites, were searched for eligible records published from 2007 to 2018. Initiative characteristics and outcomes evaluated were extracted and synthesised. In all, 84 initiatives from 167 published and grey literature records were identified, including: (1) consumer initiatives that aimed to improve access to multidisciplinary care, health literacy and care navigation (n=56); (2) health professional capacity building initiatives that aimed to ensure health professionals are skilled and provide best-practice evidence-based care (n=21); and (3) quality improvement and health system support initiatives (n=7). Evidence gaps were found relating to initiatives addressing the secondary prevention of chronic pain, those targeting vulnerable and regional populations, health professional capacity building initiatives for all primary health care providers and quality improvement and system support initiatives. Addressing evidence gaps related to effectiveness, cost-effectiveness and implementation should be the focus for future chronic pain initiatives in primary care settings.

Knowledge, satisfaction with information, decisional conflict and psychological morbidity amongst women diagnosed with ductal carcinoma in situ (DCIS).

OBJECTIVE: To assess knowledge, satisfaction with information, decisional conflict and psychological morbidity amongst women diagnosed with ductal carcinoma in situ (DCIS) and to explore the factors associated with less knowledge and greater confusion about DCIS. METHODS: A cross-sectional survey of women diagnosed with DCIS in Australia (N=144). RESULTS: This study found misunderstanding and confusion amongst women diagnosed with DCIS and a desire for more information about their breast disease. Approximately half of participants worried about their breast disease metastasizing; approximately half expressed high decisional conflict; 12% were anxious and 2% were depressed. Logistic regression analysis demonstrated that worry about dying from the breast disease was significantly associated with not knowing that DCIS could not metastasize (OR 3.9; 95% CI 1.03-14.25); and confusion about whether DCIS could metastasize was significantly associated with dissatisfaction with information (OR 12.5; 95% CI 3.8-40.2). CONCLUSION: Good communication about how DCIS differs from invasive breast cancer is essential to alleviating the confusion and worry amongst women with DCIS. PRACTICE IMPLICATIONS: Recommendations about how best to communicate a diagnosis of DCIS, including the uncertainties, are needed to guide health professionals to promote better understanding about DCIS and increase the well-being of women with DCIS.

Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS).

PURPOSE: The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women's understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA. METHODS: The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n = 18) participated in structured interviews and clinicians (n = 7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor-patient communication. RESULTS: All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis. CONCLUSIONS: This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor-patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS.

"Well, have I got cancer or haven't I?" The psycho-social issues for women diagnosed with ductal carcinoma in situ.

OBJECTIVES: To explore women's experience of being diagnosed with ductal carcinoma in situ (DCIS) in relation to the following: response to the diagnosis; understanding about the diagnosis; satisfaction with information; satisfaction with the level of involvement in treatment decision-making and satisfaction with support services. DESIGN: An explorative descriptive qualitative design was used to facilitate an in-depth exploration of women's experiences. SETTING AND PARTICIPANTS: Five focus group interviews were conducted in New South Wales (NSW), Australia, involving 26 women diagnosed with DCIS. RESULTS: DCIS is a non-invasive breast disease, that in most cases will not recur if treated, and cannot of itself metastasize to other parts of the body. However, this study found that women were confused about whether or not they had cancer that could result in death. Women's confusion was compounded by the use of the term "carcinoma" and by the recommendation of treatments such as mastectomy. Women's confusion was not alleviated by appropriate information, with most women reporting dissatisfaction with the information they received specifically about DCIS. CONCLUSIONS: This study identifies that a diagnosis of DCIS has a significant psychological impact on women. The communication challenges highlighted in this study are not only relevant to DCIS but to any other disease in which the natural history is uncertain and the evidence about treatment effectiveness is still emerging. Further research is needed in areas such as DCIS to explore the difficulties experienced in doctor-patient communication and their impact on patient outcomes, and how to optimize doctor-patient communication.