The experiences and perspectives of people with gout on urate self-monitoring.

INTRODUCTION: Gout management remains suboptimal despite safe and effective urate-lowering therapy. Self-monitoring of urate may improve gout management, however, the acceptability of urate self-monitoring by people with gout is unknown. The aim of this study was to explore the experiences of urate self-monitoring in people with gout. METHODS: Semistructured interviews were conducted with people taking urate-lowering therapy (N = 30) in a 12-month trial of urate self-monitoring in rural and urban Australia. Interviews covered the experience of monitoring and its effect on gout self-management. Deidentified transcripts were analysed thematically. RESULTS: Participants valued the ability to self-monitor and gain more understanding of urate control compared with the annual monitoring ordered by their doctors. Participants indicated that self-monitoring at home was easy, convenient and informed gout self-management behaviours such as dietary modifications, hydration, exercise and medication routines. Many participants self-monitored to understand urate concentration changes in response to feeling a gout flare was imminent or whether their behaviours, for example, alcohol intake, increased the risk of a gout flare. Urate concentrations were shared with doctors mainly when they were above target to seek management support, and this led to allopurinol dose increases in some cases. CONCLUSION: Urate self-monitoring was viewed by people with gout as convenient and useful for independent management of gout. They believed self-monitoring achieved better gout control with a less restricted lifestyle. Urate data was shared with doctors at the patient's discretion and helped inform clinical decisions, such as allopurinol dose changes. Further research on implementing urate self-monitoring in routine care would enable an evaluation of its impact on medication adherence and clinical outcomes, as well as inform gout management guidelines. PATIENT OR PUBLIC CONTRIBUTION: One person with gout, who was not a participant, was involved in the study design by providing feedback and pilot testing the semistructured interview guide. In response to their feedback, subsequent modifications to the interview guide were made to improve the understandability of the questions from a patient perspective. No additional questions were suggested.

Optimizing adherence to allopurinol for gout: patients' perspectives.

AIMS: Poor adherence to allopurinol among people with gout contributes to suboptimal gout management. This study sought to understand the facilitators and barriers to allopurinol adherence across the three stages of medication adherence, and patient perspectives on strategies to improve adherence, including self-monitoring urate concentration. METHODS: Semi-structured interviews were conducted with 26 people with gout, previously or currently taking allopurinol. De-identified verbatim transcripts were thematically analysed using an inductive and deductive approach. RESULTS: Facilitators of adherence during allopurinol initiation were motivation to prevent gout flares and trust in the advice of their healthcare professionals (HCPs). Reluctance to commence long-term medication was a barrier to allopurinol initiation. Believing in the effectiveness and necessity of allopurinol and reminder systems were facilitators of implementation. Barriers to implementation included forgetfulness, gout flares and limited feedback on allopurinol's effectiveness. Patients discontinued therapy when allopurinol was perceived as ineffective or unnecessary. Discontinuation coincided with patients experiencing gout flares while adhering to allopurinol and receiving suboptimal advice about gout management. Patients identified receiving accurate advice from HCPs and regular urate monitoring for feedback on allopurinol's effectiveness as potential strategies to improve adherence. Perceived benefits of self-monitoring urate as a strategy to promote adherence included the ability to self-manage gout and make informed decisions about allopurinol therapy with their HCP. CONCLUSION: Patient perceptions of the effectiveness and necessity of allopurinol influenced intentional adherence during medication initiation, implementation and discontinuation. Strategies that inform patients of their urate control and provide accurate medical advice have the potential to improve adherence to allopurinol.

Using discrete choice experiment to investigate patients' and parents' preferences for initiating ADHD medication.

BACKGROUND: The decision to initiate medication is complex and is influenced by a variety of factors. There is limited information on the relative importance of factors that influence the initiation of ADHD medication. AIMS: To investigate the factors, and their relative importance, that influence the decision to initiate medication in adults, and parents of children, with ADHD. METHODS: A discrete choice experiment was conducted using eight choice tasks made up of five attributes that described the outcomes of initiating medication. A mixed multinomial logit model was used to estimate preferences for medication. RESULTS: Respondents' overall preferences for initiating medication were negative (Mean (ß)= -0.72705, p < 0.1), however, significant heterogeneity was noted in preferences (SD: 0.93604, p < 0.001). Side-effects were the most important factor for both adults (Relative importance (RI) = 40.39%) and parents (RI = 41.99%). Improvement in education had a greater weighting in adults' decision-making compared to parents (RI = 36.93% vs 30.47%) while improvement in aggressive (RI = 14.38% vs 11.84%) and social behaviour (RI = 12.59% vs 10.37%) was more important to parents. CONCLUSIONS: Important differences in preferences of patients and parents were identified, highlighting that the decision to initiate medication is influenced differently in different individuals and groups.

Eliciting preferences for continuing medication among adult patients and parents of children with attention-deficit hyperactivity disorder.

BACKGROUND: Adherence to medication for attention-deficit hyperactivity disorder (ADHD) is less than optimal. Previous studies have primarily focused on qualitative assessment of factors that influence medication adherence. OBJECTIVE: This study aimed to quantify the factors that influence patient and parent preferences for continuing ADHD medication. METHOD: A discrete-choice experiment was conducted to investigate preferences. Adults, and parents of children, with ADHD were presented with eight hypothetical choice tasks of three options (Medication A, Medication B, No Medication) described by six attributes related to medication outcomes. Preferences were estimated using a mixed multinomial logit model. RESULTS: Overall, respondents' preferences (n = 216) for continuing medication were negative (mean [ß] = -1.426, p < .001); however, a significant heterogeneity in preferences was observed amongst respondents (standard deviation = 0.805, p < .001). Improvements in education, aggressive behaviour, social behaviour and family functioning, and side effects and stigma, influenced respondents' decision to continue taking medication. The respondents were willing to continue medication if they experienced positive effects, but side effects (even moderate) were the strongest concern for not continuing medication. While side effects were the most important factor for both adult patients and parents of children with ADHD, improvement in education was relatively more important for adults and improvement in aggressive behaviour, social behaviour and family functioning was relatively more important for parents of children with ADHD. Parents were more likely to not continue a medication with severe side effects even at the highest level of improvement in education. CONCLUSIONS: Side effects are the most important factor that influenced preferences for continuing medication for both adults with ADHD, as well as parents of children with ADHD. While overall the respondents preferred not to take/give medication, discrete-choice experiment showed that the relative importance of factors that influenced continuation of medications was different for the two groups. PATIENT AND PUBLIC INVOLVEMENT: Adults, and parents of children, with ADHD participated in this study by completing the online questionnaire. The questionnaire was based on findings of research in the literature, as well as earlier focus groups conducted with adults, and parents of children, with ADHD. The face validity of the questionnaire was determined by asking parents of children, and adults, with ADHD (n = 3) to complete the survey and participate in a short discussion on their understanding of the questions and their recommendations on improving the clarity of the survey.

Demographics, health literacy and health locus of control beliefs of Australian women who take complementary medicine products during pregnancy and breastfeeding: A cross-sectional, online, national survey.

BACKGROUND: Pregnant and breastfeeding women's use of complementary medicine products (CMPs) is common, and possibly associated with autonomous health care behaviours. However, the health literacy levels and health locus of control (HLOC) beliefs of women who use CMPs in pregnancy and lactation have not been previously assessed in a large Australian sample. AIM: The aim of this study is to determine the health literacy levels and HLOC beliefs of women who use CMPs in pregnancy and lactation and determine the types of CMPs used. METHODS: A cross-sectional, national, online survey of Australian pregnant or breastfeeding women aged 18 years and older, and currently using CMPs was conducted. RESULTS: A total of 810 completed surveys (354 pregnant and 456 breastfeeding women) were analysed. Most had adequate functional health literacy levels (93.3%). Health care practitioners (HCPs) HLOC mean scores were the highest for the sample, followed by Internal HLOC beliefs mean scores. Almost all (n = 809) took at least one dietary supplement, the most popular being pregnancy and breastfeeding multivitamins, iron supplements and probiotics. Use was generally in line with clinical recommendations, except for low rates of iodine supplementation. Herbal medicine use was lower for the total sample (57.3%, n = 464), but significantly higher (p < .0001) for the breastfeeding cohort, with consumers taking one to four herbal medicines each. The most popular herbs were raspberry leaf, ginger, peppermint and chamomile (pregnant respondents) and chamomile, ginger and fenugreek (breastfeeding respondents). CONCLUSIONS: Respondents were health literate, with high scores for Internal and HCP HLOC scales, suggesting that they are likely to demonstrate self-efficacy, positive health behaviours and work well in partnership with HCPs. HCPs can facilitate discussions with pregnant and breastfeeding women using CMPs, while considering women's health literacy levels, health beliefs and goals.

Correction: Predictors of Health Information-Seeking Behavior: Systematic Literature Review and Network Analysis.

[This corrects the article DOI: 10.2196/21680.].

The Role of Religion, Spirituality and Fasting in Coping with Diabetes among Indian Migrants in Australia: A Qualitative Exploratory Study.

Australia has a high proportion of migrants, with an increasing migration rate from India. While many factors influence diabetes self-management among Indian migrants, very little is known about the influence of religious beliefs and spirituality. This study explored the religious beliefs of Indian migrants in Australia and the influence of those beliefs on their diabetes self-management. Semi-structured interviews were conducted with a convenience sample of 23 Indian migrants. All interviews were audio-recorded, transcribed verbatim and thematically analysed. Most participants believed that prayers helped them alleviate stress and improve diabetes management participants also believed that receiving blessings/prayers from religious leaders prevent or cure diseases including diabetes. There were mixed views on beliefs about using insulin obtained from animal sources. Some participants were concerned about the use of animal-based insulin as it was against their religious beliefs and teachings. Some participants believed that religious fasting does not have any impact on their diabetes while others believed that it can be detrimental to their health. Religious beliefs therefore played an important role in how Indian migrants managed their diabetes. Healthcare professionals should consider their patients' religious beliefs during consultations, enlist support, such as religious scholars, to better address people's misconceptions, and identify strategies for effective diabetes management that consider religious beliefs.

Exploring factors influencing initiation, implementation and discontinuation of medications in adults with ADHD.

BACKGROUND: Adherence to ADHD medication is a complex phenomenon as the decision to adhere is influenced by a range of factors. To design tailored interventions to promote adherence, it is important to understand the factors that influence adherence in the context of its three phases: initiation, implementation and discontinuation. OBJECTIVE: The objective of this study was to explore the phase-specific factors that influence adherence to medication in adults who have a diagnosis of ADHD. METHODS: Three focus groups (FGs) were conducted with twenty adults with ADHD in different metropolitan areas of Sydney, Australia. FGs were transcribed verbatim and thematically analysed. RESULTS: Participants' decision to initiate medication (the initiation phase) was influenced by their perceived needs (desire to improve academic and social functioning) and concerns (fear of side-effects) about medication following a similar process as defined by the Necessity-Concerns Framework (NCF). The balance between benefits of medication (needs) and side-effects (concerns) continued to determine participants' daily medication-taking (the implementation phase) and persistence (or discontinuation) with their medication. Forgetfulness and stigma were reported as concerns negatively impacting the implementation phase, while medication cost and dependence influenced the discontinuation phase of adherence. CONCLUSIONS: Adults' decision to initiate, continue or discontinue medication is influenced by a range of factors; some are unique to each phase while some are common across the phases. Participants balanced the needs for the medication against their concerns in determining whether to adhere to medication at each phase. It appears that the NCF has applicability when decision making about medication is explored at the three phases of adherence.

Opt-in or opt-out health-care communication? A cross-sectional study.

BACKGROUND: Patients need medication and medical condition-related information to better self-manage their health. Health-care professionals (HCPs) should be able to actively provide information outside of one-on-one consultations; however, patient consent may be required. OBJECTIVE: To investigate the Australian public's preferences, and factors that may influence their preferences, towards an opt-in versus an opt-out approach to health communication. DESIGN: A cross-sectional study using a structured questionnaire administered via Computer-Assisted Telephone Interviewing. SETTING AND PARTICIPANTS: Participants across Australia who were adults, English-speaking and had a long-term medical condition. MAIN OUTCOME MEASURES: Preferences for opt-in vs opt-out approach to receiving follow-up tailored information. RESULTS: A total of 8683 calls were made to achieve the required sample size of 589 completed surveys. Many (346/589; 58.7%) indicated that they were interested in receiving tailored, ongoing follow-up information from their HCP. Nearly half (n = 281; 47.7%) preferred an opt-in service and 293/589 (49.7%) an opt-out service for receiving follow-up information. Reasons for preferring an opt-in service were being in control of the information received (n = 254); able to make a decision that is best for them (n = 245); opt-in service would save time for HCPs (n = 217); they may not want or need the information (n = 240). Many (n = 255) felt that an opt-out service should be part of the normal duty of care of their HCP and believed (n = 267) that this approach would ensure that everyone has access to information. CONCLUSIONS: Respondents were interested in receiving tailored information outside of consultation times. However, preferences for an opt-in or opt-out approach were divided.

Developing and user testing new pharmacy label formats-A study to inform labelling standards.

BACKGROUND: Dispensed prescription medicine labels (prescription labels) are important information sources supporting safe and appropriate medicines use. OBJECTIVE: To develop and user test patient-centred prescription label formats. METHODS: Five stages: developing 12 labels for four fictitious medicines of varying dosage forms; diagnostic user testing of labels (Round 1) with 40 consumers (each testing three labels); iterative label revision, and development of Round 2 labels (n = 7); user testing of labels (Round 2) with 20 consumers (each testing four labels); labelling recommendations. Evaluated labels stated the active ingredient and brand name, using various design features (eg upper case and bold). Dosing was expressed differently across labels: frequency of doses/day, approximate times of day (eg morning), explicit times (eg 7 to 9 AM), and/or explicit dosing interval. Participants' ability to find and understand medicines information and plan a dosing schedule were assessed. RESULTS: Participants demonstrated satisfactory ability to find and understand the dosage for all label formats. Excluding active ingredient and dosing schedule, 14/19 labels (8/12 in Round 1; 6/7 in Round 2) met industry standard on performance. Participants' ability to correctly identify the active ingredient varied, with clear medicine name sign-posting enabling all participants evaluating these labels to find and understand the active ingredient. When planning a dosing schedule, doses were correctly spaced if the label stated a dosing interval, or frequency of doses/day. Two-thirds planned appropriate dosing schedules using a dosing table. CONCLUSIONS: Effective prescription label formatting and sign-posting of active ingredient improved communication of information on labels, potentially supporting safe medicines use. PATIENT AND PUBLIC INVOLVEMENT: Consumers actively contributed to the development of dispensed prescription medicine labels. Feedback from consumers following the first round was incorporated in revisions of the labels for the next round. Patient and public involvement in this study was critical to the development of readable and understandable dispensed prescription medicine labels.

Predictors of Health Information-Seeking Behavior: Systematic Literature Review and Network Analysis.

BACKGROUND: People engage in health information-seeking behavior to support health outcomes, and being able to predict such behavior can inform the development of interventions to guide effective health information seeking. Obtaining a comprehensive list of the predictors of health information-seeking behavior through a systematic search of the literature and exploring the interrelationship of these predictors are critical first steps in this process. OBJECTIVE: This study aims to identify significant predictors of health information-seeking behavior in the primary literature, develop a common taxonomy for these predictors, and identify the evolution of the concerned research field. METHODS: A systematic search of PsycINFO, Scopus, and PubMed was conducted for all years up to and including December 10, 2019. Quantitative studies identifying significant predictors of health information-seeking behavior were included. Information seeking was broadly defined and not restricted to any source of health information. Data extraction of significant predictors was performed by 2 authors, and network analysis was conducted to observe the relationships between predictors with time. RESULTS: A total of 9549 articles were retrieved, and after the screening, 344 studies were retained for analysis. A total of 1595 significant predictors were identified. These predictors were categorized into 67 predictor categories, with the most central predictors being age, education, gender, health condition, and financial income. With time, the interrelationship of predictors in the network became denser, with the growth of new predictor grouping reaching saturation (1 new predictor identified) in the past 7 years, despite increasing publication rates. CONCLUSIONS: A common taxonomy was developed to classify 67 significant predictors of health information-seeking behavior. A time-aggregated network method was developed to track the evolution of the research field, showing the maturation of new predictor terms and an increase in primary studies reporting multiple significant predictors of health information-seeking behavior. The literature has evolved with a decreased characterization of novel predictors of health information-seeking behavior. In contrast, we identified a parallel increase in the complexity of predicting health information-seeking behavior, with an increase in the literature describing multiple significant predictors.

National Medicines Policy 2.0: a vision for the future.

Australia's National Medicines Policy was launched 20 years ago with the aim of improving health outcomes for all Australians. It was developed in partnership with healthcare professionals, consumers and the pharmaceutical industry The key parts of the Policy focus on timely access to high-quality and affordable medicines and their safe and judicious use. It also supports a viable and responsible pharmaceutical industry Since the Policy was first launched, Australia has seen significant changes in healthcare systems, medicines subsidies, health services remuneration, digital technologies and the pharmaceutical industry Medicines themselves have also changed, as have consumers' expectations. To respond to these changes, the National Medicines Policy needs to be updated with a greater focus on implementing and measuring outcomes

Factors influencing women's decision-making regarding complementary medicine product use in pregnancy and lactation.

BACKGROUND: The prevalence of complementary medicine product (CMP) use by pregnant or breastfeeding Australian mothers is high, however, there is limited data on factors influencing women's decision-making to use CMPs. This study explored and described the factors influencing women's decisions take a CMP when pregnant or breastfeeding. METHODS: Qualitative in-depth interviews and focus group discussions were held with 25 pregnant and/or breastfeeding women who currently used CMPs. Participants' health literacy was assessed using a validated single-item health literacy screening question and the Newest Vital Sign. Interview and focus group discussions were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Participants were a homogenous group. Most had higher education, medium to high incomes and high health literacy skills. They actively sought information from multiple sources and used a reiterative collation and assessment process. Their decision-making to take or not to take CMPs was informed by the need to establish the safety of the CMPs, as well as possible benefits or harms to their baby's or their own health that could result from taking a CMP. Their specific information needs included the desire to access comprehensive, consistent, clear, easy to understand, and evidence-based information. Women preferred to access information from reputable sources, namely, their trusted health care practitioners, and information linked to government or hospital websites and published research. A lack of comprehensive, clear, consistent, or evidence-based information often led to decisions not to take a CMP, as they felt unable to adequately establish its safety or benefits. Conversely, when the participants felt the CMPs information they collected was good quality and from reputable sources, it reassured them of the safety of the CMP in pregnancy and/or breastfeeding. If this confirmed a clear benefit to their baby or themselves, they were more likely to decide to take a CMP. CONCLUSIONS: The participants' demographic profile confirms previous research concerning Australian women who use CMPs during pregnancy and lactation. Participants' high health literacy skills led them to engage in a reiterative, information-seeking and analysis process fuelled by the need to find clear information before making the decision to take, or not to take, a CMP.

Women's health literacy and the complex decision-making process to use complementary medicine products in pregnancy and lactation.

BACKGROUND: Little is known about women's decision-making processes regarding using complementary medicine products (CMPs) during pregnancy or lactation. OBJECTIVES: To explore the decision-making processes of women choosing to use CMPs in pregnancy and lactation; and to investigate how women's health literacy influences their decisions. DESIGN, SETTING AND PARTICIPANTS: In-depth interviews and focus group discussions were held with twenty-five pregnant and/or breastfeeding women. Data were analysed using thematic analysis. RESULTS: Key to women's decision making was the desire to establish a CMPs safety and to receive information from a trustworthy source, preferably their most trusted health-care practitioner. Women wanted positive therapeutic relationships with health-care practitioners and to be highly involved in the decisions they made for the health of themselves and their children. Two overarching components of the decision-making process were identified: (a) women's information needs and (b) a preference for CMP use. Women collated and assessed information from other health-care practitioners, other mothers and published research during their decision-making processes. They showed a strong preference for CMP use to support their pregnancy and breastfeeding health, and that of their unborn and breastfeeding babies. DISCUSSION AND CONCLUSIONS: Complex decision-making processes to use CMPs in pregnancy and lactation were identified. The participants showed high levels of communicative and critical health literacy skills in their decision-making processes. These skills supported women's complex decision-making processes.

Nepalese patients' anti-diabetic medication taking behaviour: an exploratory study.

OBJECTIVE: To explore anti-diabetic medication taking behaviour in Nepalese patients with type 2 diabetes and investigate the factors impacting medication taking in this population. DESIGN: Face-to-face interviews (n = 48) were conducted with Nepalese patients with type 2 diabetes in Sydney (Australia) and Kathmandu (Nepal). All interviews were audio-recorded, transcribed verbatim and thematically analysed. Participants' medication adherence was also assessed quantitatively using the summary of diabetes self-care activity (SDSCA) questionnaire. RESULTS: The medication taking behaviour of Nepalese participants aligned with the Stages of Change Model, with some notable patterns of behaviour. Most participants initiated and implemented anti-diabetic medications soon after obtaining their prescription. However, a few, delayed initiation and/or ceased medications after initiation to recommence later. Nonetheless, upon recommencement, participants persisted fairly well with their medications. The self-reported medication adherence was high (97.3%). Although some participants expressed adherence as a challenge at the start of therapy, medication taking on a day-to-day basis was not reported as difficult. Factors such as participants' reluctance towards using medications and preference for natural methods of treatment, together with inadequate understanding about diabetes and treatment resulted in the delay in initiating therapy, and contributed to cessation of therapy. On the other hand, ooccasional non-adherence in daily medication taking was mostly related to inconsistency in meal practices and forgetfulness. Encouragement from doctors and increased awareness about the disease and treatment facilitated medication adherence, including initiation of therapy. CONCLUSION: This study demonstrates that Nepalese patients are likely to delay or cease anti-diabetic medications until they fully accept and acknowledge the benefits and necessity of medications for effective diabetes management. Thus, educating patients about the need for medications, as well as implementing strategies to address patients' psychological resistance towards medications will be essential for effective medication management.

Complementary medicine products used in pregnancy and lactation and an examination of the information sources accessed pertaining to maternal health literacy: a systematic review of qualitative studies.

BACKGROUND: The prevalence of complementary medicine use in pregnancy and lactation has been increasingly noted internationally. This systematic review aimed to determine the complementary medicine products (CMPs) used in pregnancy and/or lactation for the benefit of the mother, the pregnancy, child and/or the breastfeeding process. Additionally, it aimed to explore the resources women used, and to examine the role of maternal health literacy in this process. METHODS: Seven databases were comprehensively searched to identify studies published in peer-reviewed journals (1995-2017). Relevant data were extracted and thematic analysis undertaken to identify key themes related to the review objectives. RESULTS: A total of 4574 articles were identified; 28 qualitative studies met the inclusion criteria. Quantitative studies were removed for a separate, concurrent review. Herbal medicines were the main CMPs identified (n = 21 papers) in the qualitative studies, with a smaller number examining vitamin and mineral supplements together with herbal medicines (n = 3), and micronutrient supplements (n = 3). Shared cultural knowledge and traditions, followed by women elders and health care professionals were the information sources most accessed by women when choosing to use CMPs. Women used CMPs for perceived physical, mental-emotional, spiritual and cultural benefits for their pregnancies, their own health, the health of their unborn or breastfeeding babies, and/or the breastfeeding process. Two over-arching motives were identified: 1) to protect themselves or their babies from adverse events; 2) to facilitate the normal physiological processes of pregnancy, birth and lactation. Decisions to use CMPs were made within the context of their own cultures, reflected in the locus of control regarding decision-making in pregnancy and lactation, and in the health literacy environment. Medical pluralism was very common and women navigated through and between different health care services and systems throughout their pregnancies and breastfeeding journeys. CONCLUSIONS: Pregnant and breastfeeding women use herbal medicines and micronutrient supplements for a variety of perceived benefits to their babies' and their own holistic health. Women access a range of CMP-related information sources with shared cultural knowledge and women elders the most frequently accessed sources, followed by HCPs. Culture influences maternal health literacy and thus women's health care choices including CMP use.

Perceived impact of Nepalese food and food culture in diabetes.

Consuming a healthy diet forms an important component of diabetes management; however, adhering to a healthy diet is challenging. Dietary behaviour is often guided by socio-cultural, environmental and emotional factors, and not necessarily by physical and nutritional needs. This study explored Nepalese patients' perceptions of the impact of diet, diet management requirement for diabetes and how Nepalese food culture in particular influenced diet management. Interviews were conducted with Nepalese participants with type 2 diabetes in Sydney and Kathmandu; and data was thematically analysed. Diet was recognized as a cause of, and a key treatment modality, in diabetes. Besides doctors, participants in Nepal received a large amount of dietary information from the community. Dietary changes formed a major component of lifestyle modifications adopted after diagnosis, and mostly consisted of removal of foods with added sugar and foods with high total sugar content from the diet, and a reduction in overall quantity of foods consumed. Perceived dietary restriction requirements created social and emotional discomfort to patients. Most participants perceived the Nepalese food culture as a barrier to effective diet management. Meals high in carbohydrates, limited food choices, and food preparation methods were identified as barriers, particularly in Nepal. In Australia, participants reported greater availability and easier access to appropriate food, and healthier cooking options. The socio-cultural aspects of food behaviour, mainly, food practices during social events were identified as significant barriers. Although diet was acknowledged as an important component of diabetes care, and most adopted changes in their diet post-diagnosis, effective and sustained changes were difficult to achieve. Future public health campaigns and education strategies should focus on improving diet knowledge, awareness of food options for diabetes, and effective dietary management.

Consumer Health-Related Activities on Social Media: Exploratory Study.

BACKGROUND: Although a number of studies have investigated how consumers use social media for health-related purposes, there is a paucity of studies in the Australian context. OBJECTIVE: This study aimed to explore how Australian consumers used social media for health-related purposes, specifically how they identified social media platforms, which were used, and which health-related activities commonly took place. METHODS: A total of 5 focus groups (n=36 participants), each lasting 60 to 90 minutes, were conducted in the Sydney metropolitan area. The group discussions were audiorecorded and transcribed verbatim. The transcripts were coded line-by-line and thematically analyzed. RESULTS: Participants used general search engines to locate health-related social media platforms. They accessed a wide range of social media on a daily basis, using several electronic devices (in particular, mobile phones). Although privacy was a concern, it did not prevent consumers from fully engaging in social media for health-related purposes. Blogs were used to learn from other people's experiences with the same condition. Facebook allowed consumers to follow health-related pages and to participate in disease-specific group discussions. Wikipedia was used for factual information about diseases and treatments. YouTube was accessed to learn about medical procedures such as surgery. No participant reported editing or contributing to Wikipedia or posting YouTube videos related to health topics. Twitter was rarely used for health-related purposes. Social media allowed consumers to obtain and provide disease and treatment-related information and social and emotional support for those living with the same condition. Most considered their participation as observational, but some also contributed (eg, responded to people's questions). CONCLUSIONS: Participants used a wide range of social media for health-related purposes. Medical information exchange (eg, disease and treatment) and social and emotional support were the cornerstones of their online activities. Social media appears to be used as a key tool to support disease self-management.

Development and validation of a question prompt list for parents of children with attention-deficit/hyperactivity disorder: a Delphi study.

OBJECTIVES: Question prompt lists (QPLs) are structured lists of disease and treatment-specific questions intended to encourage patient question-asking during consultations with clinicians. The aim of this study was to develop a QPL intended for use by parents of children affected by attention-deficit/hyperactivity disorder (ADHD). METHODS: The QPL content (111 questions) was derived through thematic analysis of existing ADHD- and QPL-related resources. A modified Delphi method, involving a three-round web-based survey, was used to reach consensus about the QPL content. Thirty-six experts were recruited into either a professional [paediatricians, child and adolescent psychiatrists, psychologists, researchers (n =28)] or non-professional panel [parents of children diagnosed with ADHD, ADHD consumer advocates (n = 8)]. Panel members were asked to rate the importance of the QPL content using a five-point scale ranging from 'Essential' to 'Should not be included'. RESULTS: A total of 122 questions, including 11 new questions suggested by panellists, were rated by both panels. Of these, 88 (72%) were accepted for inclusion in the QPL. Of the accepted questions, 39 were re-rated during two follow-up survey rounds and 29 (74%) were subsequently accepted for inclusion. The questions covered key topics including diagnosis, understanding ADHD, treatment, health-care team, monitoring ADHD, managing ADHD, future expectations and support and information. CONCLUSIONS: To our knowledge, this is the first ADHD-specific QPL to be developed and the first use of the Delphi method to validate the content of any QPL. It is anticipated that the QPL will assist parents in obtaining relevant, reliable information and empowering their treatment decisions by enhancing the potential for shared decision making with clinicians.