Assessing the perceived value of a user-led educational intervention to support recovery in a Swedish psychiatric organization: A qualitative case study.

INTRODUCTION: Many people with mental health issues recover and re-establish their identity and find hope and meaning in life, irrespective of symptom burden. Recovery can be supported through learning and education, aiming at strengthening self-management and coping skills. Such education offered by peers with lived experience is rare and scarcely reported. The aim was to assess the perceived value of an educational intervention, called the Patient School (PS), organized within a psychiatry organization by employed patient peers with lived experience. METHODS: A qualitative case study based on interviews with people with mental health issues (n = 8), peer-organizers (n = 4) and healthcare professionals (n = 4), and documents such as schedules and educational materials were used. First, the interviews were transcribed and analyzed using inductive conventional content analysis. Second, the findings were synthesized into a programme theory, illustrated in a logic model. RESULTS: The perceived value of the PS was related to the willingness of peer-organizers to share their own experiences, a sense of belonging, sharing with like-minded and new knowledge, practical skills, roles and attitudes acquired. These experiences were empowering, decreased stigma and reassured user participants that one's identity is not defined by mental health issues. This increased self-confidence paves the way for increased self-management and creates a potential for a more efficient use of healthcare services. CONCLUSION: We conclude that this PS, organized within a psychiatry organization by salaried peers, achieved the same positive results as those reported in the literature and showed the value of having peer-organizers being part of the staff. PATIENT OR PUBLIC CONTRIBUTION: This research was performed in a partnership between academic researchers and persons with user experience of psychiatric services, engaged in the educational intervention in the focus of the study. The research plan was co-designed, and the analysis of the data collected was performed in collaboration. The participation of the co-researchers with user experience gave the project team access to the study site, provided the team with insights into to study context and contributed with an understanding promoting the interpretation of the findings.

Prevalence of HIV-related stigma manifestations and their contributing factors among people living with HIV in Sweden - a nationwide study.

BACKGROUND: With access to  antiretroviral therapy (ART) HIV infection is a chronic manageable condition and non-sexually transmissible. Yet, many people living with HIV still testify about experiencing HIV-related stigma and discrimination. It is well-documented that HIV-related stigma and discrimination continue to be critical barriers to prevention, treatment, care and quality of life. From an individual stigma-reduction intervention perspective, it is essential to identify individual and interpersonal factors associated with HIV-related stigma manifestations. To address this issue and to expand the literature, the aim of this study was to assess the prevalence of HIV-related stigma manifestations and their associated factors among a diverse sample of people living with HIV in Sweden. METHOD: Data from 1 096 participants were derived from a nationally representative, anonymous cross-sectional survey "Living with HIV in Sweden". HIV-related stigma manifestations were assessed using the validated Swedish 12-item HIV Stigma Scale encompassing four HIV-related stigma manifestations: personalised stigma, concerns with public attitudes towards people living with HIV, concerns with sharing HIV status, and internalized stigma. Variables potentially associated with the HIV-related stigma manifestations were divided into four categories: demographic characteristics, clinical HIV factors, distress and ART adherence, and available emotional HIV-related support. Four multivariable hierarchical linear regression analyses were employed to explore the associations between multiple contributors and HIV-related stigma manifestations. RESULTS: The most dominating stigma feature was anticipation of HIV-related stigma. It was manifested in high scores on concerns with sharing HIV status reported by 78% of the participants and high scores on concerns about public attitudes towards people living with HIV reported by 54% of the participants. High scores on personalised stigma and internalized stigma were reported by around one third of the participants respectively. Between 23 and 31% of the variance of the four reported HIV-related stigma manifestations were explained mainly by the same pattern of associated factors including female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support. CONCLUSION: The most dominating stigma feature was anticipation of stigma. Female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support constituted potential vulnerability factors of the four HIV-related stigma manifestations. Our findings highlight the vital necessity to support people living with HIV to increase their resilience to stigma in its different forms. Exploring associated factors of HIV-related stigma manifestations may give an indication of what circumstances may increase the risk of stigma burden and factors amenable to targeted interventions. As individual stigma-reductions interventions cannot be performed isolated from HIV-related stigma and discrimination in society, a key challenge is to intensify anti-stigma interventions also on the societal level.

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.

BACKGROUND: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6-year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. METHODS: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly-spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross-sectional recurrent approach to track changes over time. FINDINGS: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. CONCLUSIONS: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. PATIENT OR PUBLIC CONTRIBUTION: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.

Patients' experiences of Daily Talks: a patient-driven intervention in inpatient mental healthcare.

BACKGROUND: Recovery is known to be enhanced by meaningful interactions between patients and mental health staff. However, nurses may become distanced from patients, and patients may spend most of their time in inpatient mental health care alone. AIMS: This study aimed to explore how patients experience the intervention Daily Talks, a patient-driven innovation intended to enhance meaningful interactions between patients and staff. METHODS: Fourteen in-depth interviews were performed with patients who participated in Daily Talks. The interviews were analysed using reflexive thematic analysis. RESULTS: The results of the participants' experiences of Daily Talks are presented in four themes: 1.Interpersonal and active interaction where individual factors matter 2.A patient-controlled space 3.A multi-use intervention and 4.A part of the daily healthcare structure. Participants stated that Daily Talks improved the relationship between patients and their nursing staff, and they stressed the importance of patients having control over both time and content in the Daily Talks. Daily Talks was used to vent emotions and thoughts, handle situations and create strategies, and become part of a helpful structure. CONCLUSIONS: The results support the value of Daily Talks, indicating that Daily Talks may facilitate helpful structures and meaningful relationships between patients and nursing staff.

Engagement of specialized palliative care services with the general public: A population-level survey in three European countries.

BACKGROUND: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. AIM: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. DESIGN, SETTING, PARTICIPANTS: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. RESULTS: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%-90%) compared to Belgian (31%-71%) and Swedish services (19%-38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. CONCLUSION: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.

Towards a new understanding of HIV-related stigma in the era of efficient treatment- A qualitative reconceptualization of existing theory.

AIM: To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. DESIGN: Qualitative study using interviews and a framework approach to analysis. METHODS: People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach. RESULTS: Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature. CONCLUSIONS: The HIV stigma framework could benefit from revision for people living with virally suppressed HIV. IMPLICATIONS: The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.

Burnout in nursing: a theoretical review.

BACKGROUND: Workforce studies often identify burnout as a nursing 'outcome'. Yet, burnout itself-what constitutes it, what factors contribute to its development, and what the wider consequences are for individuals, organisations, or their patients-is rarely made explicit. We aimed to provide a comprehensive summary of research that examines theorised relationships between burnout and other variables, in order to determine what is known (and not known) about the causes and consequences of burnout in nursing, and how this relates to theories of burnout. METHODS: We searched MEDLINE, CINAHL, and PsycINFO. We included quantitative primary empirical studies (published in English) which examined associations between burnout and work-related factors in the nursing workforce. RESULTS: Ninety-one papers were identified. The majority (n = 87) were cross-sectional studies; 39 studies used all three subscales of the Maslach Burnout Inventory (MBI) Scale to measure burnout. As hypothesised by Maslach, we identified high workload, value incongruence, low control over the job, low decision latitude, poor social climate/social support, and low rewards as predictors of burnout. Maslach suggested that turnover, sickness absence, and general health were effects of burnout; however, we identified relationships only with general health and sickness absence. Other factors that were classified as predictors of burnout in the nursing literature were low/inadequate nurse staffing levels, ≥ 12-h shifts, low schedule flexibility, time pressure, high job and psychological demands, low task variety, role conflict, low autonomy, negative nurse-physician relationship, poor supervisor/leader support, poor leadership, negative team relationship, and job insecurity. Among the outcomes of burnout, we found reduced job performance, poor quality of care, poor patient safety, adverse events, patient negative experience, medication errors, infections, patient falls, and intention to leave. CONCLUSIONS: The patterns identified by these studies consistently show that adverse job characteristics-high workload, low staffing levels, long shifts, and low control-are associated with burnout in nursing. The potential consequences for staff and patients are severe. The literature on burnout in nursing partly supports Maslach's theory, but some areas are insufficiently tested, in particular, the association between burnout and turnover, and relationships were found for some MBI dimensions only.

The Relationship Between Stigma and Health-Related Quality of Life in People Living with HIV Who Have Full Access to Antiretroviral Treatment: An Assessment of Earnshaw and Chaudoir's HIV Stigma Framework Using Empirical Data.

The aim was to empirically test the tenets of Earnshaw and Chaudoir's HIV stigma framework and its potential covariates for persons living with HIV in Sweden. Partial least squares structural equation modelling was used on survey data from 173 persons living with HIV in Sweden. Experiencing stigma was reported to a higher extent by younger persons and by women who had migrated to Sweden. As expected, anticipated stigma was related to lower Physical functioning, and internalized stigma to lower Emotional wellbeing. In contrast to that hypothesized by the HIV stigma framework, enacted stigma was not related to Physical functioning and no relationships were found between HIV-related stigma and antiretroviral adherence. These results indicate that the HIV stigma framework may need to be revised for contexts where a very high proportion of persons living with HIV are diagnosed and under efficient treatment.

Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts.

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort.

Development of a 12-item short version of the HIV stigma scale.

BACKGROUND: Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma Scale by Berger et al., a shorter instrument would be preferable to facilitate the inclusion of HIV stigma in more and broader surveys. Therefore, the aim of this work was to develop a substantially shorter, but still valid, version of the HIV Stigma Scale. METHODS: Data from a psychometric evaluation of the Swedish 40-item HIV Stigma Scale were reanalysed to create a short version with 12 items (three from each of the four stigma subscales: personalised stigma, disclosure concerns, concerns with public attitudes and negative self-image). The short version of the HIV stigma scale was then psychometrically tested using data from a national survey investigating stigma and quality of life among people living with HIV in Sweden (n = 880, mean age 47.9 years, 26% female). RESULTS: The hypothesized factor structure of the proposed short version was replicated in exploratory factor analysis without cross loadings and confirmatory factor analysis supported construct validity with high standardised effects (>0.7) of items on the intended scales. The χ2 test was statistically significant (χ2 = 154.2, df = 48, p < 0.001), but alternate fit measures indicated acceptable fit (comparative fit index: 0.963, Tucker-Lewis index: 0.950 and root mean square error of approximation: 0.071). Corrected item-total correlation coefficients were >0.4 for all items, with a variation indicating that the broadness of the concept of stigma had been captured. All but two aspects of HIV-related stigma that the instrument is intended to cover were captured by the selected items in the short version. The aspects that did not lose any items were judged to have acceptable psychometric properties. The short version of the instrument showed higher floor and ceiling effects than the full-length scale, indicating a loss of sensitivity in the short version. Cronbach's α for the subscales were all >0.7. CONCLUSIONS: Although being less sensitive in measurement, the proposed 12-item short version of the HIV Stigma Scale has comparable psychometric properties to the full-length scale and may be used when a shorter instrument is needed.

Prevalence of HIV-related stigma among people with HIV in Switzerland: addressing the elephant in the room.

OBJECTIVES: We aimed to determine the prevalence of HIV-related stigma among people with HIV (PWH) in Switzerland. DESIGN: A cross-sectional multicentre study nested within the Swiss HIV Cohort Study (SHCS). METHODS: We included adult PWH enrolled in the SHCS, attending follow-up between March 1st, 2020, and January 31st, 2021. Inability to speak English, French, German, or Italian was the only exclusion criterion. Participants were invited to complete a validated 12-item HIV-stigma questionnaire comprising four stigma subscales (negative self-image, personalised stigma, disclosure concerns, and concerns regarding public attitudes), plus two healthcare-related stigma items. Questionnaire responses were graded using a four-point Likert-type scale, higher scores indicating higher stigma. "Non-applicable", inferring HIV-status non-disclosure, was possible for personalised stigma; stigma scores from participants answering "non-applicable" to ≥1 items were analysed separately. Factors associated with HIV-stigma were identified through multivariable linear models. RESULTS: Of 9643 PWH with a SHCS visit, 5563 participated in the study: 26% were female, 13% Black and 37% heterosexual; median age was 53 years (interquartile range 44-59); 2067 participants (37%) gave ≥1 "non-applicable" responses. Disclosure concerns had the highest stigma scores and were reported by 4656/5563 (84%). HIV-stigma was reported across all demographic groups. However, being female, Black, and heterosexual were independently associated with higher scores. Higher education and longer follow-up duration were associated with lower scores. Healthcare-related stigma was reported in 37% of participants. CONCLUSIONS: HIV-stigma was prevalent across all demographic groups. The association with being female and Black suggests that HIV-stigma accentuates pre-existing gender and race inequalities.

COVID-19-related stigma among infected people in Sweden; psychometric properties and levels of stigma in two cohorts as measured by a COVID-19 stigma scale.

BACKGROUND: Epidemics have historically been accompanied by stigma and discrimination. Disease-related stigma has often been shown to have severe consequences for physical, mental and social wellbeing and lead to barriers to diagnosis, treatment and prevention. The aims of this study were to investigate if a HIV-related stigma measure could be adapted and valid and reliable to measure COVID-19-related stigma, and also to investigate levels of self-reported stigma and related factors among people in Sweden with experience of COVID-19 and compare levels of COVID-19-related stigma versus HIV-related stigma among persons living with HIV who had experienced a COVID-19 event. METHODS: Cognitive interviews (n = 11) and cross-sectional surveys were made after the acute phase of the illness using a new 12-item COVID-19 Stigma Scale and the established 12-item HIV Stigma Scale in two cohorts (people who had experienced COVID-19 (n = 166/209, 79%) and people living with HIV who had experienced a COVID-19 event (n = 50/91, 55%). Psychometric analysis of the COVID-19 Stigma Scale was performed by calculating floor and ceiling effects, Cronbach's α and exploratory factor analysis. Levels of COVID-19 stigma between groups were analysed using the Mann-Whitney U test. Levels of COVID-19 and HIV stigma among people living with HIV with a COVID-19 event were compared using the Wilcoxon signed-rank test. RESULTS: The COVID-19 cohort consisted of 88 (53%) men and 78 (47%) women, mean age 51 (19-80); 143 (87%) living in a higher and 22 (13%) in a lower income area. The HIV + COVID-19 cohort consisted of 34 (68%) men and 16 (32%) women, mean age 51 (26-79); 20 (40%) living in a higher and 30 (60%) in a lower income area. The cognitive interviews showed that the stigma items were easy to understand. Factor analysis suggested a four-factor solution accounting for 77% of the total variance. There were no cross loadings, but two items loaded on factors differing from the original scale. All subscales had acceptable internal consistency, showed high floor and no ceiling effects. There was no statistically significant difference between COVID-19 stigma scores between the two cohorts or between genders. People living in lower income areas reported more negative self-image and concerns about public attitudes related to COVID-19 than people in higher income areas (median score 3 vs 3 and 4 vs 3 on a scale from 3-12, Z = -1.980, p = 0.048 and Z = -2.023, p = 0.024, respectively). People from the HIV + COVID-19 cohort reported more HIV than COVID-19 stigma. CONCLUSIONS: The adapted 12-item COVID-19 Stigma Scale may be valid and reliable for measurement of COVID-19-related stigma. However, specific items may need to be rephrased or replaced to better correspond to the COVID-19 context. People who had experienced COVID-19 reported low levels of COVID-19-related stigma in general but people from lower income areas had higher levels of negative self-image and concerns about public attitudes related to COVID-19 than people from areas with higher income, which may call for targeted interventions. Although exhibiting more pronounced HIV stigma levels, people living with HIV who had experienced COVID-19 reported COVID-19-related stigma of the same low magnitude as their peers not living with HIV.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review.

OBJECTIVES: The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported. METHODS: We performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008-2020. RESULTS: In total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration. CONCLUSIONS: The patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients' and informal caregivers' daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.

Patient lead users experience of the COVID-19 pandemic: a qualitative interview study.

OBJECTIVES: Patient lead users can be defined as patients or relatives who use their knowledge and experience to improve their own or a relative's care situation and/or the healthcare system, and who are active beyond what is usually expected. The objective of this study is to explore patient lead users' experiences and engagement during the early COVID-19 pandemic. DESIGN: Qualitative in-depth interviews with a cross-sectional time horizon. SETTING: The early COVID-19 pandemic in Sweden, from 1 June through 14 September, 2020. PARTICIPANTS: A total of 10 patient lead users were recruited from the Swedish patient lead users (spetspatient) network. All participants were living with different long-term conditions and matched the definition of being patient lead users. RESULTS: We found that during the early pandemic, patient lead users experienced that they no longer knew how to best manage their own health and care situations. On an individual level, they described an initial lack of knowledge, new routines, including a change in their health and an experience of people without a disease being in the same situation as them, for a while. On a systemic level, they described a fear of imminent unmet-care backlogs and decreased opportunities for sharing patient perspectives in care organisation, but also described increased networking. CONCLUSIONS: Patient lead users can be seen as an emerging community of practice, and as such could be a valuable resource as a complementary communication channel for an improved health system. The health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic.

Patient-driven innovations reported in peer-reviewed journals: a scoping review.

BACKGROUND: Awareness of patients' innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature. OBJECTIVES: The objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals? ELIGIBILITY CRITERIA: We used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of 'patient driven' to focus on the role of patients and/or family caregivers. The search was limited to years 2008-2020. SOURCES OF EVIDENCE: Four electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies. CHARTING METHODS: Data from the included articles were extracted and categorised inductively. RESULTS: A total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, 'Do-It-Yourself Artificial Pancreas System' and the online health network 'PatientsLikeMe', were the subject of half of the articles. CONCLUSIONS: Peer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators' research while being mindful of taking over the work of the innovators themselves.

Longitudinal trends and determinants of patient-reported side effects on ART-a Swedish national registry study.

INTRODUCTION: The use of patient-reported outcomes (PROs) to systematically quantify adverse events (AE) will assist in the improvement of medical care and the QoL of patients living with HIV (PLWH). The aim of this study was to investigate the associations between self-reported side effects and other PROs, demographics and laboratory data, and further evaluate the Health Questionnaire (HQ) as a tool for following trends in patient-reported side effects over time in relation to trends in prescribed third agent in ART. MATERIALS AND METHODS: The Swedish National Registry InfCareHiv includes an annual self-reported nine-item HQwhich is used in patient-centered HIV care in all Swedish HIV units. In this study, the experience of side effects was addressed. We analyzed 9,476 HQs completed by 4,186 PLWH together with details about their prescribed ART and relevant biomarkers collected during 2011-2017. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and mixed logistic regression. RESULTS: The cross-sectional analysis of the HQs showed that the frequency of reported side effects decreased from 32% (2011) to 15% (2017). During the same period, there was a shift in ART prescription from efavirenz (EFV) to dolutegravir (DTG) (positive correlation coefficient r = 0.94, p = 0.0016). Further, PLWH who reported being satisfied with their physical health (OR: 0.47, p = <0.001) or psychological health (OR: 0.70, p = 0.001) were less likely to report side effects than those less satisfied. CONCLUSIONS: Self-reported side effects were found to have a close relationship with the patient's ratings of their overall health situation and demonstrated a strong correlation with the sharp decline in use of EFV and rise in use of DTG, with reported side effects being halved. This study supports the feasibility of using the HQ as a tool for longitudinal follow up of trends in PROs.

Stigma reduction interventions in people living with HIV to improve health-related quality of life.

As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, health-related quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention.