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BackgroundAlthough women with rheumatoid arthritis (RA) face a number of challenges in negotiating the journey to parenthood, no studies have explored the information needs of women with RA in relation to their childbearing years. This study aimed to determine the need for (and preferred mode/s of delivery of) information regarding pregnancy, post-natal care and early parenting among women with RA.MethodsInterviews and focus groups were conducted with 27 women with RA who were pregnant in the last 5 years, currently pregnant or planning pregnancy. Verbatim transcripts were analysed using both inductive and deductive approaches. Two validated instruments were used to quantify information needs and preferences: the Educational Needs Assessment Tool (ENAT, range 0-156, higher scores indicate higher educational needs) and the Autonomy Preference Index (API, range 0-100, higher scores indicate stronger preferences).ResultsLack of information about medication safety, access to physical/emotional support services and practical strategies for coping with daily challenges related to parenting were the most prominent of the six key themes identified. Rheumatologists were the primary source for information regarding treatment decisions while arthritis consumer organisations were perceived as critical ‘resource hubs’. There was strong preference for information delivered electronically, especially among rural participants. Quantitative outcomes supported the qualitative findings; on average, participants reported high educational needs (mean ENAT score 97.2, SD 30.8) and API scores indicated that desire for information (mean 89.8, SD 5.6) was greater than the need for involvement in treatment decision-making (mean 68.4, SD 8.2).ConclusionsMany women with RA struggle to find adequate information on pregnancy planning, pregnancy and early parenting in relation to their chronic condition, and there is a clear need to develop accessible information that is consumer-focused and evidence-based. Although most participants trusted their rheumatologist as their primary information source, there was consistent demand for more information, particularly regarding the safety of RA medications during pregnancy and breastfeeding, and the importance of learning from other women’s personal experiences was strongly emphasised.Electronic supplementary materialThe online version of this article (doi:10.1186/s12891-015-0657-4) contains supplementary material, which is available to authorized users.

Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long‐term medical condition. Self‐management support is provided by health care and community services to enhance patients’ ability to care for their chronic conditions in a cooperative framework. In Australia, there is a range of self‐management support initiatives that have targeted patients (most notably, chronic disease self‐management education programs) and health professionals (financial incentives, education and training). To date, there has been little coordination or integration of these self‐management initiatives to enhance the patient–health professional clinical encounter. If self‐management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders — patients, carers, health professionals, and health care organisations. A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

BackgroundDespite the large volume of research dedicated to understanding chronic low back pain (CLBP), patient outcomes remain modest while healthcare costs continue to rise, creating a major public health burden. Health literacy - the ability to seek, understand and utilise health information - has been identified as an important factor in the course of other chronic conditions and may be important in the aetiology of CLBP. Many of the currently available health literacy measurement tools are limited since they measure narrow aspects of health literacy. The Health Literacy Measurement Scale (HeLMS) was developed recently to measure broader elements of health literacy. The aim of this study was to measure broad elements of health literacy among individuals with CLBP and without LBP using the HeLMS.MethodsThirty-six community-dwelling adults with CLBP and 44 with no history of LBP responded to the HeLMS. Individuals were recruited as part of a larger community-based spinal health study in Western Australia. Scores for the eight domains of the HeLMS as well as individual item responses were compared between the groups.ResultsHeLMS scores were similar between individuals with and without CLBP for seven of the eight health literacy domains (p > 0.05). However, compared to individuals with no history of LBP, those with CLBP had a significantly lower score in the domain 'Patient attitudes towards their health' (mean difference [95% CI]: 0.46 [0.11-0.82]) and significantly lower scores for each of the individual items within this domain (p < 0.05). Moderate effect sizes ranged from d = 0.47-0.65.ConclusionsAlthough no differences were identified in HeLMS scores between the groups for seven of the health literacy domains, adults with CLBP reported greater difficulty in engaging in general positive health behaviours. This aspect of health literacy suggests that self-management support initiatives may benefit individuals with CLBP.

Chronic disease self‐management education programs aim to empower patients through providing information and teaching skills and techniques to improve self‐care and doctor–patient interaction, with the ultimate goal of improving quality of life. The recent 2006–07 federal budget allocated an unprecedented $515 million over 5 years for activation of patient self‐management activities, commencing this financial year. Previous attempts in other countries to incorporate self‐management education activities into the health care sector have faced setbacks because of inadequate integration into primary care. Engagement of health care professionals and their endorsement of self‐management activities is critical to success.

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Conclusions: Clinicians and students encounter barriers to delivery of high-value OA care in clinical practice/training (micro-level); within service environments (meso-level); and within the health system (macro-level).