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1.
Clin Chem Lab Med ; 61(4): 696-702, 2023 03 28.
Article in English | MEDLINE | ID: mdl-36565304

ABSTRACT

In vitro diagnostics (IVD) testing is a powerful tool for medical diagnosis, and patients' safety is guaranteed by a complex system of personnel qualification of the specialist in laboratory medicine, of process control, and legal restrictions in healthcare, most of them under national regulation. Direct-to-consumer laboratory testing (DTCT) is testing ordered by the consumer and performed either by the consumer at home or analysis of self-collected samples in a laboratory. However, since DTCT are not always subject to effective competent authority oversight, DTCT may pose risks to lay persons using and relying on it for healthcare decision-making. Laboratory medicine specialists should be very cautious when new DTCTs are introduced. As qualified professionals, they should feel obliged to warn and educate patients and the public about the risks of inappropriate and harmful DTCT.


Subject(s)
Delivery of Health Care , Laboratories , Humans
2.
Health Expect ; 25(4): 1988-2001, 2022 08.
Article in English | MEDLINE | ID: mdl-35789158

ABSTRACT

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.


Subject(s)
COVID-19 , Community Participation , Delivery of Health Care , COVID-19/epidemiology , COVID-19/therapy , Community Participation/methods , Delivery of Health Care/methods , Delivery of Health Care/standards , Humans , New South Wales/epidemiology , Pandemics
3.
Epilepsy Behav ; 124: 108381, 2021 Oct 28.
Article in English | MEDLINE | ID: mdl-34757261

ABSTRACT

BACKGROUND: Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings. METHODS: A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings. RESULTS: A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers. CONCLUSIONS: This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.

4.
Epilepsy Behav ; 102: 106721, 2020 01.
Article in English | MEDLINE | ID: mdl-31785483

ABSTRACT

BACKGROUND: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. METHOD: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. RESULTS: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual 'spin-off' effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. CONCLUSION: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.


Subject(s)
Drug Resistant Epilepsy/psychology , Drug Resistant Epilepsy/surgery , Quality of Life , Social Support , Adult , Female , Humans , Male , Qualitative Research , Quality of Life/psychology
5.
Epilepsy Behav ; 111: 107232, 2020 10.
Article in English | MEDLINE | ID: mdl-32640412

ABSTRACT

OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.


Subject(s)
Drug Resistant Epilepsy/epidemiology , Drug Resistant Epilepsy/therapy , Primary Health Care/methods , Referral and Consultation , Surveys and Questionnaires , Tertiary Healthcare/methods , Adult , Aged , Drug Resistant Epilepsy/psychology , Family/psychology , Feasibility Studies , Female , General Practitioners/psychology , General Practitioners/trends , Humans , Male , Middle Aged , Neurologists/psychology , Neurologists/trends , New South Wales/epidemiology , Primary Health Care/trends , Qualitative Research , Referral and Consultation/trends , Tertiary Healthcare/trends
6.
BMC Neurol ; 19(1): 29, 2019 Feb 19.
Article in English | MEDLINE | ID: mdl-30782132

ABSTRACT

BACKGROUND: Individuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment. This is a complex process and there are concerns over delays in referring refractory epilepsy patients for surgery and subsequent treatment. The aim of this study was to explore the different patient pathways, referral and surgical timeframes, and surgical and medical treatment options for refractory epilepsy patients referred to two Tertiary Epilepsy Clinics in New South Wales, Australia. METHODS: Clinical records were reviewed for 50 patients attending the two clinics, in two large teaching hospitals (25 in Clinic 1; 25 in Clinic 2. A purpose-designed audit tool collected detailed aspects of outpatient consultations and treatment. Patients with refractory epilepsy with their first appointment in 2014 were reviewed for up to six visits until the end of 2016. Data collection included: patient demographics, type of epilepsy, drug management, and assessment for surgery. Outcomes included: decisions regarding surgical and/or medical management, and seizure status following surgery. Patient-reported outcome measures to assess anxiety and depression were collected in Clinic 1 only. RESULTS: Patient mean age was 38.3 years (SD 13.4), the mean years since diagnosis was 17.3 years (SD 9.8), and 88.0% of patients had a main diagnosis of focal epilepsy. Patients were taking an average of 2.3 (SD 0.9) anti-epileptic drugs at the first clinic visit. A total of 17 (34.0%) patients were referred to the surgical team and 11 (22.0%) underwent a neuro-surgical procedure. The average waiting time between visit 1 to surgical referral was 38.8 weeks (SD 25.1), and between visit 1 and the first post-operative visit was 55.8 weeks (SD 25.0). CONCLUSION: The findings confirm international data showing significant waiting times between diagnosis of epilepsy and referral to specialist clinics for surgical assessment and highlight different approaches in each clinic in terms of visit numbers and recorded activities. A standardised pathway and data collection, including patient-reported outcome measures, would provide better evidence for whether promoting earlier referral and assessment for surgery improves the lives of this disease group.


Subject(s)
Drug Resistant Epilepsy/surgery , Referral and Consultation , Time-to-Treatment/statistics & numerical data , Adult , Australia , Clinical Audit , Delivery of Health Care/methods , Delivery of Health Care/statistics & numerical data , Female , Humans , Male , Middle Aged , Neurology
7.
Epilepsy Behav ; 92: 79-89, 2019 03.
Article in English | MEDLINE | ID: mdl-30634157

ABSTRACT

This paper offers a new way of understanding the course of a chronic, neurological condition through a comprehensive model of patient-reported determinants of health and wellbeing: The Patient Reported ImpleMentation sciEnce (PRIME) model is the first model of its kind to be based on patient-driven insights for the design and implementation of initiatives that could improve tertiary, primary, and community healthcare services for patients with refractory epilepsy, and has broad implications for other disorders; PRIME focuses on: patient-reported determinants of health and wellbeing, pathways through care, gaps in treatment and other system delays, patient need and expectation, and barriers and facilitators to high-quality care provision; PRIME highlights that in the context of refractory epilepsy, patients value appropriate, clear, and speedy referrals from primary care practitioners and community neurologists to specialist healthcare professionals based in tertiary epilepsy centers. Many patients also want to share in decisions around treatment and care, and gain a greater understanding of their debilitating disease, so as to find ways to self-manage their illness more effectively and plan for the future. Here, PRIME is presented using refractory epilepsy as the exemplar case, while the model remains flexible, suitable for adaptation to other settings, patient populations, and conditions; PRIME comprises six critical levels: 1) The Individual Patient Model; 2) The Patient Relationships Model; 3) The Patient Care Pathways Model; 4) The Patient Transitions Model; 5) The Pre- and Postintervention Model; and 6) The Comprehensive Patient Model. Each level is dealt with in detail, while Levels 5 and 6 are presented in terms of where the gaps lie in our current knowledge, in particular in relation to patients' journeys through healthcare, system intersections, and individuals adaptive behavior following resective surgery, as well as others' views of the disease, such as family members.


Subject(s)
Decision Making, Shared , Drug Resistant Epilepsy/diagnosis , Drug Resistant Epilepsy/surgery , Health Personnel/psychology , Implementation Science , Patient Reported Outcome Measures , Adult , Aged , Delivery of Health Care/methods , Drug Resistant Epilepsy/psychology , Family/psychology , Female , Humans , Male , Middle Aged , Young Adult
8.
Heart Lung Circ ; 28(8): 1246-1252, 2019 Aug.
Article in English | MEDLINE | ID: mdl-29805088

ABSTRACT

BACKGROUND: Smoking cessation (SC) care in the perioperative period of cardiothoracic surgery is important to reduce surgical risk and help achieve long-term smoking abstinence in patients who continue to smoke. The implementation of clinical guidelines for SC care in the perioperative period has proved challenging, yet little is known of what influences the inter-disciplinary team involved in the cardiothoracic area. This qualitative study explored the views of the clinicians involved in perioperative period of cardiothoracic surgery in Australia on their SC advice and support. METHODS: Semi-structured interviews were conducted with 52 cardiothoracic surgeons, anaesthetists, nurses and physiotherapists in three public tertiary referral hospitals and three private hospitals in New South Wales (NSW). Data was thematically analysed, and categorised using the Behaviour Change Wheel "Capabilities, Opportunity, Motivation & Behaviour" (COM-B) analysis framework to understand the factors that influence clinicians' views and perceived abilities to provide SC care. RESULTS: Barriers and facilitators to providing SC care were identified. The most commonly identified barriers in capability were the lack of knowledge, training and institutional engagement. Opportunity was hindered by lack of time, hospital support and resources, yet facilitated by the existence of a collaborative, multidisciplinary team and the ability to follow-up patients long term. In motivation, clinicians' attitudes and experience negatively influenced the initiation of the cessation conversation, while intrinsic attributes of empathy and positivity were drivers to provide SC care. CONCLUSIONS: Clinicians' views, together with inadequate SC training, resources and engagement to implement clinical guidelines, contribute to inconsistent SC care. There is a need for hospitals to provide adequate SC resources and training to all clinicians to improve SC care to cardiothoracic surgery patients throughout the perioperative period.


Subject(s)
Cardiac Surgical Procedures , Health Personnel , Hospitals, Public , Perioperative Care , Smoking Cessation , Specialties, Surgical , Humans , Male , Middle Aged , New South Wales , Qualitative Research
9.
Epilepsy Behav ; 79: 9-16, 2018 02.
Article in English | MEDLINE | ID: mdl-29223007

ABSTRACT

This study examined the health service utilization and hospital treatment cost of individuals with epilepsy by age group, mortality within 30days, and surgical outcomes for individuals with refractory epilepsy in New South Wales (NSW), Australia. A retrospective examination of linked hospitalization and mortality data for individuals hospitalized with a diagnosis of epilepsy during 2012-2016. Hospitalized incidence rates per 1000 population were calculated, and negative binomial regression was used to examine temporal trends. Mortality within 30days of hospitalization was identified, along with cause of death. There were 44,722 hospitalizations during the five-year period, with a hospitalization rate of 85.6 per 1000 population (95% confidence interval (CI): 84.7-86.4). Total hospital treatment costs were AUD$402.9 million. Children aged ≤17years accounted for 32.0% of hospitalizations. Just over half to two-thirds of hospitalizations for each age group were for a principal diagnosis of epilepsy, with 2976 hospitalizations of individuals for status epilepticus. The overall mean hospital length of stay (LOS) for epilepsy hospitalizations was 5.1days (standard deviation (SD)=9.0). Thirty-day mortality was highest for individuals aged ≥65years (6.7%), and epilepsy was identified as the underlying cause of death for 18.2% of deaths. This research has provided insight into the healthcare utilization profiles of individuals with epilepsy at different ages. Epilepsy hospitalizations constitute a substantial cost to the healthcare system, and better overall management of seizures and comorbid conditions is likely to lead to a reduction in the need for hospitalization.


Subject(s)
Epilepsy/economics , Epilepsy/therapy , Health Care Costs , Hospitalization/economics , Length of Stay/statistics & numerical data , Status Epilepticus/economics , Status Epilepticus/therapy , Adolescent , Aged , Australia/epidemiology , Child , Child, Preschool , Epilepsy/mortality , Female , Hospitals , Humans , Incidence , Infant , Length of Stay/economics , Male , New South Wales/epidemiology , Retrospective Studies , Status Epilepticus/mortality , Young Adult
10.
Epilepsy Behav ; 83: 36-43, 2018 06.
Article in English | MEDLINE | ID: mdl-29649672

ABSTRACT

OBJECTIVES: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. METHODS: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient-clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. RESULTS: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. CONCLUSION: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.


Subject(s)
Drug Resistant Epilepsy/psychology , Drug Resistant Epilepsy/surgery , Patient Participation/psychology , Patient Participation/trends , Qualitative Research , Referral and Consultation/trends , Adult , Anticonvulsants/therapeutic use , Decision Making , Drug Resistant Epilepsy/epidemiology , Female , Humans , Male , Middle Aged , New South Wales/epidemiology , Treatment Outcome
11.
BMC Health Serv Res ; 18(1): 818, 2018 Oct 25.
Article in English | MEDLINE | ID: mdl-30359251

ABSTRACT

BACKGROUND: A relational approach to autonomy refers to the way in which social conditions and relationships shape a person's self-identity and capacity in decision-making. This article provides an empirical account of how treatment choices for women undergoing breast diseases care are fostered within the dynamics of their relationships with clinicians, family members, and other aspects of their social environment. METHODS: This qualitative study recruited ten women undergoing treatment at a breast programme, and eight clinicians supporting their care, in a private teaching hospital in New South Wales, Australia. Fourteen patient-clinician consultation observations and 17 semi-structured interviews were conducted. Schema analysis of interview transcripts were undertaken by a team of researchers and corroborated by observational fieldnotes. RESULTS: Relational identities of patients influenced the rationale for treatment decision-making. Patients drew on supportive resources from family and medical advice from clinicians to progress with treatment goals. While clinicians held much social power over patients as the medical experts, patients highlighted the need for clinicians to earn their trust through demonstrated professionalism. Information exchange created a communicative space for clinicians and patients to negotiate shared values, promoting greater patient ownership of treatment decisions. As treatment progressed, patients' personal experiences of illness and treatment became a source of self-reflection, with a transformative impact on self-confidence and assertiveness. CONCLUSION: Patients' confidence and self-trust can be fostered by opportunities for communicative engagement and self-reflection over the course of treatment in breast disease, and better integration of their self-identity and social values in treatment decisions.


Subject(s)
Breast Diseases/psychology , Decision Making , Personal Autonomy , Adult , Aged , Communication , Family , Family Relations , Female , Humans , Middle Aged , New South Wales , Physician-Patient Relations , Power, Psychological , Qualitative Research , Social Conditions , Trust
12.
Qual Health Res ; 28(1): 30-46, 2018 Jan.
Article in English | MEDLINE | ID: mdl-28938853

ABSTRACT

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women's understandings of risk as they "journeyed" through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited ( N = 25) from a large UK Health Board, 2014-2015, completing a "Book of Experience," and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: "Subjective Understandings of Risk" and "Journeying Toward an Unknown Future." Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients' foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future.


Subject(s)
Breast Neoplasms/psychology , Administrative Personnel/psychology , Adult , Breast Neoplasms/diagnosis , Breast Neoplasms/genetics , Continuity of Patient Care , Female , Forecasting , Genetic Testing , Humans , Interviews as Topic , Middle Aged , Prognosis , Psychology , Risk Assessment
13.
Cult Health Sex ; 19(9): 1024-1037, 2017 Sep.
Article in English | MEDLINE | ID: mdl-28276923

ABSTRACT

Culture is often problematised as a key structural driver of HIV transmission in Papua New Guinea. Official HIV programmes, as well as church teachings, tend to focus on customary marital practices of polygyny and bride price payments as 'harmful traditions'. This focus can oversimplify the effects of current and historical nuances of cultural, political and economic change on sexual concurrency and gender inequality. Community-based healthcare workers in Southern Highlands Province explain that customary marital practices are now highly reconfigured from their traditional forms. A recent mining boom has financially advantaged local and travelling men, who are driving an increase of sexual concurrency, transactional sex and inflation of bride price payments. Healthcare workers suggest that the erosion of important social relationships and kinship obligations by the expanding cash economy has caused an intensification of individual male power while enhancing the vulnerability of women. Yet without the means to challenge the effects of uneven economic development, healthcare workers are left to target 'culture' as the central influence on individual behaviours. A commitment to address structural inequality by political leadership and in HIV prevention programmes and a careful contextualisation of cultural change is needed.


Subject(s)
Culture , HIV Infections/ethnology , Marriage , Social Change , Gender Identity , HIV Infections/epidemiology , HIV Infections/etiology , Humans , Interviews as Topic , Marriage/ethnology , Marriage/psychology , Papua New Guinea/epidemiology , Power, Psychological , Sexual Behavior/ethnology , Sexual Behavior/psychology
14.
AIDS Behav ; 18(3): 573-82, 2014 Mar.
Article in English | MEDLINE | ID: mdl-24264727

ABSTRACT

Female sex workers (FSW) are considered one of the key affected populations in Papua New Guinea at risk of acquiring HIV. An integrated bio-behavioral survey of sex workers in Port Moresby was conducted to determine the nature and extent of this risk. About half (51.1 %) of the 411 FSW who reported having any sexual intercourse with clients had engaged in both anal and vaginal intercourse with clients in the last 6 months. In spite of having poorer HIV knowledge (OR95 % CI = 0.14-0.34), FSW who had anal intercourse with clients were significantly more likely to have used a condom at the last vaginal intercourse with a client (OR95 % CI = 1.04-2.87). Similarly, FSW who had anal intercourse with regular and casual partners were significantly more likely to have used a condom at the last vaginal intercourse. Those who engaged in both anal and vaginal intercourse with clients had similar condom use for both vaginal and anal intercourse, with the majority (78.1 %) using a condom at the last occasion for both vaginal and anal intercourse. These FSW may have different risk and protective factors that affect their use of condom during sexual intercourse. Further research is needed to investigate this difference between those who practice anal intercourse and those who do not in order to provide evidence for better programming.


Subject(s)
Coitus , HIV Infections/transmission , Sex Work/statistics & numerical data , Sexual Behavior/statistics & numerical data , Adolescent , Adult , Condoms/statistics & numerical data , Female , HIV Infections/epidemiology , HIV Infections/prevention & control , Humans , Interviews as Topic , Male , Middle Aged , Papua New Guinea/epidemiology , Qualitative Research , Risk Factors , Sexual Partners , Young Adult
15.
JMIR Res Protoc ; 13: e56899, 2024 Jun 04.
Article in English | MEDLINE | ID: mdl-38833693

ABSTRACT

BACKGROUND: In recent years, social media have emerged as important spaces for commercial marketing of health tests, which can be used for the screening and diagnosis of otherwise generally healthy people. However, little is known about how health tests are promoted on social media, whether the information provided is accurate and balanced, and if there is transparency around conflicts of interest. OBJECTIVE: This study aims to understand and quantify how social media is being used to discuss or promote health tests with the potential for overdiagnosis or overuse to generally healthy people. METHODS: Content analysis of social media posts on the anti-Mullerian hormone test, whole-body magnetic resonance imaging scan, multicancer early detection, testosterone test, and gut microbe test from influential international social media accounts on Instagram and TikTok. The 5 tests have been identified as having the following criteria: (1) there are evidence-based concerns about overdiagnosis or overuse, (2) there is evidence or concerns that the results of tests do not lead to improved health outcomes for generally healthy people and may cause harm or waste, and (3) the tests are being promoted on social media to generally healthy people. English language text-only posts, images, infographics, articles, recorded videos including reels, and audio-only posts are included. Posts from accounts with <1000 followers as well as stories, live videos, and non-English posts are excluded. Using keywords related to the test, the top posts were searched and screened until there were 100 eligible posts from each platform for each test (total of 1000 posts). Data from the caption, video, and on-screen text are being summarized and extracted into a Microsoft Excel (Microsoft Corporation) spreadsheet and included in the analysis. The analysis will take a combined inductive approach when generating key themes and a deductive approach using a prespecified framework. Quantitative data will be analyzed in Stata SE (version 18.0; Stata Corp). RESULTS: Data on Instagram and TikTok have been searched and screened. Analysis has now commenced. The findings will be disseminated via publications in peer-reviewed international medical journals and will also be presented at national and international conferences in late 2024 and 2025. CONCLUSIONS: This study will contribute to the limited evidence base on the nature of the relationship between social media and the problems of overdiagnosis and overuse of health care services. This understanding is essential to develop strategies to mitigate potential harm and plan solutions, with the aim of helping to protect members of the public from being marketed low-value tests, becoming patients unnecessarily, and taking resources away from genuine needs within the health system. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56899.


Subject(s)
Medical Overuse , Social Media , Humans , Medical Overuse/prevention & control , Health Promotion/methods
16.
AIDS Res Ther ; 10(1): 17, 2013 Jun 27.
Article in English | MEDLINE | ID: mdl-23805823

ABSTRACT

BACKGROUND: The prevention of intimate partner transmission of HIV remains an important component of comprehensive HIV prevention strategies. In this paper we examine the sexual practices of people living with HIV on antiretroviral therapy (ART) in Papua New Guinea (PNG). METHOD: In 2008, a total of 374 HIV-positive people over the age of 16 and on ART for more than two weeks were recruited using a non-probability, convenience sampling methodology. This accounted for around 18% of adults on ART at the time. A further 36 people participated in semi-structured interviews. All interviews were thematically analysed using NVivo qualitative data analysis software. RESULTS: Less than forty per cent (38%) of participants reported having had sexual intercourse in the six months prior to the survey. Marital status was by far the most important factor in determining sexual activity, but consistent condom use during vaginal intercourse with a regular partner was low. Only 46% reported consistent condom use during vaginal intercourse with a regular partner in the last six months, despite 77% of all participants reporting that consistent condom use can prevent HIV transmission. Consistent condom use was lowest amongst married couples and those in seroconcordant relationships. The vast majority (91.8%) of all participants with a regular heterosexual partner had disclosed their status to their partner. Qualitative data reinforced low rates of sexual activity and provided important insights into sexual abstinence and condom use. CONCLUSIONS: Considering the importance of intimate partner transmission of HIV, these results on the sexual practices of people with HIV on ART in PNG suggest that one-dimensional HIV prevention messages focussing solely on condom use fail to account for the current practices and needs of HIV-positive people, especially those who are married and know their partners' HIV status.

17.
Qual Health Res ; 23(2): 180-93, 2013 Feb.
Article in English | MEDLINE | ID: mdl-23188385

ABSTRACT

Adult male circumcision has been shown to reduce the transmission of HIV. Women's acceptability of male circumcision is important in Papua New Guinea's preparedness to introduce male circumcision, and in ethical considerations of its use as a biomedical technology for HIV prevention. We conducted 21 focus group discussions and 18 in-depth interviews with women in all four regions of Papua New Guinea. The majority of women objected to the introduction of male circumcision for three main reasons: circumcision would result in sexual risk compensation; circumcision goes against Christian faith; and circumcision is a new practice that is culturally inappropriate. A minority of women accepted male circumcision for the prevention of HIV and other sexually transmitted infections, and for the benefit of penile hygiene and health. Women's objections to circumcision as a biomedical method of preventing HIV reemphasize the importance of sociocultural and behavioral interventions in Papua New Guinea.


Subject(s)
Attitude to Health , Black People/psychology , Circumcision, Male/psychology , HIV Infections/epidemiology , HIV Infections/prevention & control , Women/psychology , Adolescent , Adult , Culture , Female , Focus Groups , Humans , Interviews as Topic , Male , Middle Aged , Papua New Guinea/epidemiology , Religion , Young Adult
18.
JAMA Netw Open ; 6(8): e2330192, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37603332

ABSTRACT

Importance: The recent provision of direct-to-consumer (DTC) Anti-Mullerian Hormone (AMH) testing in several countries has been contentious, particularly due to concerns about judicious testing and informed consent. Objective: To describe and analyze information on websites that sell DTC AMH tests. Design, Setting, and Participants: Qualitative study including content analysis of text information from websites in multiple countries that sell AMH tests DTC. The top 50 search results from 4 different internet search strings were captured and reviewed for eligibility. Data were extracted in March 2022 and analyzed from April 2022 to July 2023. Main outcomes and measures: Themes and categories were derived from the website content using a conventional inductive approach, with a particular focus on information content, quality and accuracy, as well as the tone and language used. Results: Twenty-seven websites across 7 different countries formed the sample for analysis. Information varied considerably across websites and was organized into 6 overarching categories: (1) whether a test description was included (25 websites [93%]); (2) statements about what the test can do, which included indicating ovarian reserve (26 websites [96%]) and indicating likelihood of conceiving (20 websites [74%]); (3) statements about the usefulness of the test result, which included enabling women to adjust their reproductive timeline (11 websites [41%]) and determining whether egg freezing was a viable option (8 websites [30%]); (4) blood collection method (ie, through a laboratory or an at-home sample); (5) promotion tactics, such as stating the convenience of testing (24 websites [89%]) and using language promoting empowerment and control (7 websites [26%]); and (6) statements about limitations of the test, which included polycystic ovary syndrome falsely inflating AMH levels (13 websites [48%]) and that it cannot accurately predict chances of conceiving (9 websites [33%]). Conclusion and relevance: In this qualitative study including content analysis, most websites selling DTC AMH tests included false and misleading claims which might lead consumers to purchase an AMH test in the belief that it can reliably predict fertility potential and age of menopause. Depending on the test result, this may in turn lead to misplaced anxiety or reassurance about one's fertility and modifications to subsequent conception or contraceptive plans and behavior.


Subject(s)
Anti-Mullerian Hormone , Direct-to-Consumer Advertising , Reagent Kits, Diagnostic , Female , Humans , Anti-Mullerian Hormone/analysis , Fertility , Commerce , Internet
19.
BMJ Open ; 13(12): e074205, 2023 12 27.
Article in English | MEDLINE | ID: mdl-38151277

ABSTRACT

OBJECTIVES: The objective of this study is to map the range and variety of direct-to-consumer (DTC) tests advertised online in Australia and analyse their potential clinical utility and implications for medical overuse. DESIGN: Systematic online search of DTC test products in Google and Google Shopping. DTC test advertisements data were collected and analysed to develop a typology of potential clinical utility of the tests at population level, assessing their potential benefits and harms using available evidence, informed by concepts of medical overuse. RESULTS: We identified 484 DTC tests (103 unique products), ranging from $A12.99 to $A1947 in cost (mean $A197.83; median $A148.50). Using our typology, we assigned the tests into one of four categories: tests with potential clinical utility (10.7%); tests with limited clinical utility (30.6%); non-evidence-based commercial 'health checks' (41.9%); and tests whose methods and/or target conditions are not recognised by the general medical community (16.7%). Of the products identified, 56% did not state that they offered pretest or post-test consultation, and 51% did not report analytical performance of the test or laboratory accreditation. CONCLUSIONS: This first-in-Australia study shows most DTC tests sold online have low potential clinical utility, with healthy consumers constituting the main target market. Harms may be caused by overdiagnosis, high rates of false positives and treatment decisions led by non-evidence-based tests, as well as financial costs of unnecessary and inappropriate testing. Regulatory mechanisms should demand a higher standard of evidence of clinical utility and efficacy for DTC tests. Better transparency and reporting of health outcomes, and the development of decision-support resources for consumers are needed.


Subject(s)
Advertising , Genetic Testing , Humans , Genetic Testing/methods , Australia , Laboratories , Referral and Consultation
20.
Soc Sci Med ; 303: 114954, 2022 06.
Article in English | MEDLINE | ID: mdl-35569232

ABSTRACT

The Apple Watch Electrocardiogram (ECG) is a digital feature that detects signs of atrial fibrillation (AFib), a heart arrhythmia that can lead to stroke. Unlike AFib detection offered in a clinical setting to patients or those at higher risk, the Apple Watch ECG is a direct-to-consumer (DTC) product marketed to the healthy as a self-performed medical test. The feature is incorporated in the design as one of many applications in a multifunctional smartwatch. The Apple Watch ECG signals the movement of consumer wearables into the domain of medical devices, and the highly contested practice of AFib screening. This article examines how this technology produces new avenues for medical overuse among people who are unlikely to gain clinical benefit, and who as active consumers become medicalised via taking part in disease-specific monitoring. Interviews with Apple Watch ECG consumers suggest their strongly trust in the Apple brand is amplified by the promissory quality of screening and technical innovation. What would otherwise be a costly clinical procedure is condensed into an accessible function in a wearable device. Consequently, AFib screening loses its clinical purpose, and is instead refashioned into a component of healthy lifestyle behaviour. Repeat self-screening becomes 'bundled' with similar health monitoring practices routinised in consumer wearables. Active uptake supports a market for the product and adds to the reputation of the Apple brand such that consumers become complicit in legitimising a medical practice that has limited clinical justification.


Subject(s)
Atrial Fibrillation , Stroke , Wearable Electronic Devices , Atrial Fibrillation/diagnosis , Electrocardiography , Humans , Medical Overuse
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