Mandy Nielsen

Information needs of people with low back pain for an online resource: a qualitative study of consumer views.

Abstract Purpose: To identify the information needs of people with low back pain (LBP) in Australia, and the preferred methods to present this information online, as a basis for development of a patient-centred website. Available online LBP resources are limited in quality and content and it is not clear if they are meeting the needs of sufferers. Method: Focus groups and semi-structured telephone interviews, involving 28 people with LBP. Results: Seven categories of information were identified: reasons for LBP, treatment and management options, self-help information, psychological and social dimensions, lay stories, quality assurance of information and roles of different healthcare professionals and locally available services. Identified preferences for online presentation included: multimodality, emphasis on visual media, readability and interactivity. Participants had been unable to obtain desired LBP information using existing resources. Conclusions: This study provides important guidance for development of a patient-centred website grounded in the expressed needs and preferences of people with LBP. Understanding the breadth of patients’ questions and concerns is essential for provision of patient-centred information and interventions. Incorporating these with the current evidence base would provide an accessible and relevant LBP patient education referral point, which is currently lacking. Implications for Rehabilitation Use of the internet to obtain health information is increasing, although there is little evidence that existing low back pain websites are meeting the expressed needs of health consumers. Our research suggests that people with low back pain have difficulty finding relevant and trustworthy information about the condition on the internet. Taking patient information needs and presentation preferences into account when designing online information material will provide people with low back pain an accessible and relevant educational resource that is currently lacking.

Individuals’ explanations for their persistent or recurrent low back pain: a cross-sectional survey

BackgroundMost people experience low back pain (LBP), and it is often ongoing or recurrent. Contemporary research knowledge indicates individual’s pain beliefs have a strong effect on their pain experience and management. This study’s primary aim was to determine the discourses (patterns of thinking) underlying people’s beliefs about what causes their LBP to persist. The secondary aim was to investigate what they believed was the source of this thinking.MethodsWe used a primarily qualitative survey design: 130 participants answered questions about what caused their LBP to persist, and where they learned about these causes. We analysed responses about what caused their LBP using discourse analysis (primary aim), and mixed methods involving content analysis and descriptive statistics to analyse responses indicating where participants learnt these beliefs (secondary aim).ResultsWe found that individuals discussed persistent LBP as 1) due to the body being like a ‘broken machine’, 2) permanent/immutable, 3) complex, and 4) very negative. Most participants indicated that they learnt these beliefs from health professionals (116, 89%).ConclusionsWe concluded that despite continuing attempts to shift pain beliefs to more complex biopsychosocial factors, most people with LBP adhere to the traditional biomedical perspective of anatomical/biomechanical causes. Relatedly, they often see their condition as very negative. Contrary to current “best practice” guidelines for LBP management, a potential consequence of such beliefs is an avoidance of physical activities, which is likely to result in increased morbidity. That health professionals may be the most pervasive source of this thinking is a cause for concern. A small number of people attributed non-physical, unknown or complex causes to their persistent LBP – indicating that other options are possible.

Comment on Blyth et al. The contribution of psychosocial factors to the development of chronic pain: The key to better outcomes for patients? Pain 2007;129 : 8-11

The recent review by Fiona Blyth, Gary Macfarlane and Michael Nicholas (Pain 2007;129:8–11) regarding the lack of attention to social-environmental factors in discussion of the biopsychosocial model of pain provided a welcome focus on an area curiously underacknowledged in the pain literature. My own research into chronic pain supports the comment that there is ‘‘fuzzy thinking about psychosocial factors’’ (Blyth et al., 2007:8) in conceptualising and operationalising the biopsychosocial model of pain. I agree that where psychosocial factors are discussed, the emphasis tends to be on the ‘psycho’ domain, rather than the broader social and environmental domain. However there are two inter-related points I wish to raise regarding the levels of influence of social factors and the associated practical implications. The first point concerns the significance of the health care system as a potentially influential factor at all levels of social organization. While socioeconomic and legal structures, workplaces, and personal relationships were mentioned by Blyth and colleagues, the influence of the health care system on individuals was not. The impact of the health care system, from macro-level social structures to micro-level doctor–patient interactions, is a recurring theme in qualitative research which explores the perspectives of people with chronic pain (for example, see: Bendelow and Williams, 1996; Walker et al., 1999; Glenton, 2003; Werner and Malterud, 2003; Kenny, 2004). Overall, a negative picture of health care experience emerges from this literature. For example, Walker et al. (1999:627) noted ‘‘the emergence of such strong commonalities of negative experience ‘in the system’ from chronic back pain sufferers who shared nothing more in common than seeking help from two different pain clinics’’. Even where a health provider adopts a biopsychosocial approach, there is evidence to suggest this approach is not adequately understood by other health providers, sufferers, and the general public (Nielsen and Weir, 2001). Inconclusive diagnostic results and subsequent referral to a psychiatrist or psychologist may lead the sufferer to conclude that the physical reality of their pain is being questioned (Kenny, 2004). The consequences of this (perceived or real) delegitimation of the pain experience are documented in numerous studies, and include feelings of anger, shame, blame, self-doubt, frustration, bitterness, stigma and powerlessness, and isolating behaviour such as withdrawal from family and social situations (Walker et al., 1999; Werner et al., 2004). Lack of legitimation can also lead to problems in obtaining medication and welfare benefits and associated accommodations (Glenton, 2003). The second point I wish to raise relates to the practical implications of the phenomenological literature mentioned above. There is a well-established discourse within the sociological health-related literature on the need to incorporate the ‘lay’ perspective within health care (Malterud, 2002; Sullivan, 2003). Within the research literature this discourse is reflected in a shift from an ‘outsider’ approach of viewing the lay perspective through concepts such as the ‘sick role’ and ‘illness behaviours’ (Hyden, 1997; Lawton, 2003) to one that focuses directly upon people’s subjective experiences within their life context (Lawton, 2003). The second point therefore is that the existing body of phenomenological literature, and the methods used to develop this knowledge of lived experience, should not be ignored in the process of identifying which factors are important in the development, continuation and consequences of chronic pain. Attention is needed to developing a more explicit understanding and effective response to the social factors involved in the biopsychosocial model of pain. Blyth and colleagues identify the need for clearer aetiological models, agreement on the dimensions of psychosocial factors, and critical evaluation of available measurement instruments (Blyth et al., 2007:10). I would add that this process should not discount the expertise of the person with chronic pain or the existing body of research that has explored this important dimension of experience.

Designing an online resource for people with low back pain: health-care provider perspectives

People with low back pain (LBP) seek education and information from the Internet. Existing LBP websites are often of poor quality, and disparities have been identified between patient and health-care provider evaluations of LBP websites. This study aimed to identify health-care provider perspectives on desirable content for a proposed LBP website and how this information should be presented. It complements an earlier study of LBP patient (consumer) perspectives. A qualitative descriptive study, encompassing focus groups and telephone interviews, was conducted with 42 health-care professionals practising in the LBP field. Four categories of information were identified: explaining LBP; treatment and management options; myth-busting information; and communication with health-care professionals. Presentation preferences included: use of visual media; interactivity; and useability and readability. Comparison with the consumer study identified differences with regard to: depth and breadth of diagnostic and treatment information; provision of lay person experiences and stories; and capacity for consumer-to-consumer interaction online. Views of both consumers and health-care providers are critical when developing an online LBP resource. Failure to address the needs of both stakeholder groups diminishes the potential of the resource to improve consumer outcomes.

What constitutes back pain flare? A cross sectional survey of individuals with low back pain

Abstract Background and purpose Low back pain (LBP) is a lifelong problem for many. In acute episodes, or as a persistent condition, LBP is fluctuating in nature, with pain and other features of the condition varying in intensity and duration over time. Symptom flares (also known as flare ups) contribute to this variation and can have a great impact on the lives of those who have LBP. An important goal of treatments for, and research on, LBP is arguably to decrease symptom flare in both frequency and severity. However, this goal is problematic with little research, and no consensus, on how to define LBP flare. In particular, patients’ understandings of LBP flare have received limited attention in the literature. To appropriately address this issue, we sought to understand how flares are conceptualized by individuals with LBP. Methods We used an inductive, predominantly qualitative methodology, conducting an online survey with 130 individuals who self-reported experiencing LBP. The survey investigated participants’ views on LBP flare including its meaning, features and symptoms, and whether ‘flare’ and ‘pain increase’ were synonymous. Qualitative analysis of responses involved thematic and content analysis with descriptive statistics used for the quantitative component. Results Our data analysis found that participants identified many aspects of a flare to be important. Qualitative analyses highlighted a number of themes including that LBP flare was conceptualized as: (1) on increase in pain and other uncomfortable sensations such as paraesthesia or muscle tension, (2) an increase in the area, quality and/or duration of symptoms, (3) a reduction in physical, cognitive and/or social functioning, and (4) negative psychological and/or emotional factors. Flare was also discussed as a change that was difficult to settle. When participants considered whether ‘flare’ and ‘pain increase’ were synonymous, responses were evenly divided between ‘no’ (47%) and ‘yes’ (46%) with remaining participants ‘unsure’. Conclusions The key finding was that many people with LBP do not consider their condition to be flared simply on the basis of a pain increase. In general, other features were required to also change. Results highlighted that a narrow focus on pain is unlikely to differentiate minor pain events from a flare. these findings are important as they contrast with most commonly used definitions of a flare that focus predominantly on pain increase. Implications Our findings have implications for understanding the trajectory of LBP over time. Understandings derived from perspectives of individuals with LBP highlight that defining flare in LBP is complex. In order to provide person-centred care, individual context and experiences should be taken into account. Therefore, understandings of LBP flare require consideration of factors beyond simply an increase in pain. A comprehensive, person-centred understanding of flare that includes a number of features beyond simply an increase in pain intensity is likely to be useful to better identify flares in research settings, assisting endeavours to understand and reduce LBP. Similarly, in clinical settings a nuanced conceptualisation of flare is likely to help health professionals communicate understandings of flare when working with individuals to manage their LBP.