Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment-specific patient-reported outcome measure.

OBJECTIVES: Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. METHODS: Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. RESULTS: Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. CONCLUSION: We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM.

Patient Perceptions of Physical Activity After a Diagnosis of Giant Cell Arteritis: Analysis of Multinational Qualitative Data.

OBJECTIVE: To explore patient perceptions of physical activity in giant cell arteritis (GCA). METHODS: This was a multinational qualitative study, analyzing interview data collected from participants from the UK (n = 25) and Australia (n = 11) with a definitive diagnosis of GCA from imaging or biopsy. Interview transcripts were analyzed using thematic analysis to identify themes related to physical activity. This was secondary analysis of data collected to explore health-related quality of life in people with GCA. RESULTS: A total of 108 individual codes pertaining to physical activity were identified. These were grouped into 2 overarching themes: barriers to and facilitators of physical activity, each with 4 subthemes. Barriers were categorized into physical symptoms (including visual loss, fatigue, weakness, pain, and stiffness), perceptions of personal capability (including poor stamina, confidence, and mobility), negative perceptions of physical activity, and negative consequences. Facilitators of physical activity were categorized into external facilitators (including motivation from health care professionals and support groups), access to appropriate facilities, personal strategies (including pacing and goal-setting), and personal facilitators (including internal motivation to improve symptoms, and positive reinforcement). CONCLUSION: A range of barriers and facilitators to physical activity were identified in relation to GCA. Future work could include development of an intervention to support physical activity in patients with GCA; ideally this intervention should be underpinned by an appropriate behavioral change framework and codesigned with patients.

Is the Counterweight Program a feasible and acceptable option for structured weight management delivered by practice nurses in Australia? A mixed-methods study.

Nurse-led weight management programs, like the Counterweight Program in the United Kingdom, may offer a way for Australian general practices to provide weight management support to adults who are overweight or obese. During Counterweight, nurses provide patients with six fortnightly education sessions and three follow-up sessions to support weight maintenance. This study examined the feasibility, acceptability and perceived value of the Counterweight Program in the Australian primary care setting using a mixed-methods approach. Six practice nurses, from three general practices, were trained and subsidised to deliver the program. Of the 65 patients enrolled, 75% (n=49) completed the six education sessions. General practitioners and practice nurses reported that the training and resource materials were useful, the program fitted into general practices with minimal disruption and the additional workload was manageable. Patients reported that the program created a sense of accountability and provided a safe space to learn about weight management. Overall, Counterweight was perceived as feasible, acceptable and valuable by Australian practice staff and patients. The key challenge for future implementation will be identifying adequate and sustainable funding. An application to publically fund Counterweight under the Medicare Benefits Schedule would require stronger evidence of effectiveness and cost-effectiveness in Australia.

A population analysis of self-management and health-related quality of life for chronic musculoskeletal conditions.

BACKGROUND: There is growing policy emphasis on self-management as an essential component of musculoskeletal chronic care models. Underpinning this drive is the assumption that with correct 'informational' framing people will better manage their condition's progression and thereby maintain quality of life. OBJECTIVE: To assess associations between self-management behaviours and health-related quality of life for people with chronic musculoskeletal conditions. DESIGN: Using survey data from health census and follow-up structured telephone interviews, linear regression (cumulatively adjusted for potential confounders) and logistic regression examined associations between use of specific self-management behaviours and quality of life. SETTING AND PARTICIPANTS: A total of 885 respondents (2012) who indicated still having a musculoskeletal condition reported in a 2010 health census (Port Lincoln, South Australia). VARIABLES: Specific self-management activities, age, sex, education, marital status, smoking, comorbidities and pain. OUTCOME MEASURE: EQ-5D-5L. RESULTS: Exercise (63%) and diet (19%) were the most commonly reported self-management activities used to manage musculoskeletal conditions. About 24% reported not using any specific self-management activities. Involvement in self-management showed no association with quality of life, with and without adjustment for confounders. Diet had a negative association with quality of life as did use of formal support (self-management course or community group support). DISCUSSION: Taking a real-world perspective, these findings raise important questions about how people currently engage with self-management activities and the kinds of outcomes that can be expected from undertaking these activities. The timing of people's uptake of self-management within the musculoskeletal disease continuum is an issue requiring further attention in both research and practice.

Education to improve cancer care in rural South Australia.

INTRODUCTION: Cancer management follows the overall trend of rural health disparities, with higher incidence rates of preventable cancers and lower survival rates in rural Australia. Cancer prevention and management has been identified as a priority area and Cancer Australia has funded a variety of innovations throughout Australia. The Rural Chemotherapy Mentoring Program (RCMP) forms part of this drive to improve access to chemotherapy for rural based cancer sufferers in South Australia (SA). The key strategy of this program was the provision of opportunities for rural health clinicians (nurses and GPs) to enhance their knowledge and skills in the delivery of chemotherapy and cancer care through clinical placements at metropolitan oncology units. The RCMP enrolled 43 current SA rural clinicians (five GPs and 38 nurses). This evaluation was undertaken at the end of RCMP's initial 18 months. It considered how those involved in the RCMP perceived development and delivery of the RCMP, identifying key aspects of the program that were successful. This report emphasises lessons learnt which may be of relevance more widely in the development of other rural health professional education. METHODS: The evaluation used a mixed method approach, designed to accommodate different perspectives from the health professionals with different roles in the program. Quantitative and qualitative questionnaire data from clinician participants, their employers, and providers of education at metropolitan cancer units, were supplemented with qualitative interview data from these sample groups and from the program's steering committee. The analysis used interpretative methods to examine the key strengths, limitations and the potential for future development of the program. RESULTS: The vast majority of participants, employers, providers of training and the steering committee representatives expressed high levels of overall satisfaction about their involvement in RCMP. A clear identifiable need for increased knowledge and skills in cancer care was expressed by rural clinical participants pre-clinical placement. Technical aspects of the delivery of some chemotherapy protocols and the steps in safely preparing patients to receive chemotherapy were key areas where respondents lacked confidence prior to their clinical placement. Post-placement self-evaluation data highlighted improvements in participants' understandings and confidence about chemotherapy, and cancer care knowledge. Participants and their employers identified change in specific work activities resulting from their new knowledge. The program's limitations were identified. CONCLUSIONS: Knowledge acquisition was a key to the success of the program, and the transfer of experience between rural and urban based clinicians was an important aspect of this. Generalisable recommendations for further improvement of the RCMP include: (1) clearly define and articulate a precise learning objective of the program; (2) involve staff who will directly deliver mentoring in planning of the program; (3) allow time in the planning phase to resolve complex indemnity issues across workplaces; and (4) provide funding for a dedicated trainer (preferably a staff member within the unit) to supervise placements in busy urban oncology clinics.

Rural children's perceptions of child farm safety printed communication strategies.

INTRODUCTION: Child farm safety has been identified as a key public health concern in Australia. To date, communication strategies for child farm safety have primarily targeted rural based adults as custodians of children, and because the greatest proportion of deaths occur in pre-school children. However, emerging international literature acknowledges the importance of understanding the perceptions and practices of children and adolescents as active agents for identifying and preventing hazard risks and accidents. This qualitative exploratory study examined how rural students aged 7-12 years read farm safety messages in printed farm safety communication tools, developed predominantly by Farmsafe Australia and Farmsafe Queensland. The study also identifies students' ideas to improve communication tools. METHODS: Seventeen focus groups were conducted in rural-based schools in a number of commodity regions across Australia. There was an average of eight students in each of these focus groups. The sample included children aged between 7 and 12 years. Focus groups were generally split into two age cohorts: 7-9 years (seven focus groups) and 10-12 years (eight focus groups). Two focus groups were conducted with students in a composite age range of 7-12 years, due to the small number of students in those schools. Semi-structured questioning was used to explore students' perceptions of child farm safety printed communication tools, predominantly developed by Farmsafe Australia. The tools used for discussion were: a poster on the provision of a safe play area and the dangers of moving vehicles; a fridge magnet with dot points used to emphasis five farm based behaviours that address child safety; and a child farm safety educational resource kit developed by Farmsafe Queensland (Safety on the Land), which included activity sheets, stickers and a build-it-yourself money-box. Focus group discussions were audiotaped, transcribed and analysed using qualitative interpretative methods. RESULTS: There was variance in the way children read meanings in child farm safety messages on the poster. In particular, there were misinterpretations of the messages portrayed in the poster by 7-9 years olds. Students found the Safety on the Land kit helpful for delivering the farm-safe message, due to its participatory format. The findings show that the use of cartoon style illustrations and comic formats to communicate child farm safety messages was positively perceived by the age groups in this sample. CONCLUSIONS: Farmsafe Australia's poster was open to varied interpretations by students, some of which missed the safety message altogether. The use of a broad communication tool such as a poster is problematic because it is displayed in public places which, by implication, reach a wide audience. Future design of farm safety communication tools should take into account the views of primary school children as a specific target audience. Students enjoyed the participatory nature of the Safety on the Land kit and made suggestions about how this tool could effect change in behaviour. The findings of the study also indicate the potential effectiveness of cartoon style illustrations and comic formats for delivering child farm safety messages to a target audience of 7-12 year olds.