Australian public perspectives on genomic newborn screening: which conditions should be included?

BACKGROUND: Implementing genomic sequencing into newborn screening programs allows for significant expansion in the number and scope of conditions detected. We sought to explore public preferences and perspectives on which conditions to include in genomic newborn screening (gNBS). METHODS: We recruited English-speaking members of the Australian public over 18 years of age, using social media, and invited them to participate in online focus groups. RESULTS: Seventy-five members of the public aged 23-72 participated in one of fifteen focus groups. Participants agreed that if prioritisation of conditions was necessary, childhood-onset conditions were more important to include than later-onset conditions. Despite the purpose of the focus groups being to elicit public preferences, participants wanted to defer to others, such as health professionals or those with a lived experience of each condition, to make decisions about which conditions to include. Many participants saw benefit in including conditions with no available treatment. Participants agreed that gNBS should be fully publicly funded. CONCLUSION: How many and which conditions are included in a gNBS program will be a complex decision requiring detailed assessment of benefits and costs alongside public and professional engagement. Our study provides support for implementing gNBS for treatable childhood-onset conditions.

Difficult climate-adaptive decisions in forests as complex social-ecological systems.

Climate change threatens the social, ecological, and economic benefits enjoyed by forest-dependent communities worldwide. Climate-adaptive forest management strategies such as genomics-based assisted migration (AM) may help protect many of these threatened benefits. However, such novel technological interventions in complex social-ecological systems will generate new risks, benefits, and uncertainties that interact with diverse forest values and preexisting risks. Using data from 16 focus groups in British Columbia, Canada, we show that different stakeholders (forestry professionals, environmental nongovernmental organizations, local government officials, and members of local business communities) emphasize different kinds of risks and uncertainties in judging the appropriateness of AM. We show the difficulty of climate-adaptive decisions in complex social-ecological systems in which both climate change and adaptation will have widespread and cascading impacts on diverse nonclimate values. Overarching judgments about AM as an adaptation strategy, which may appear simple when elicited in surveys or questionnaires, require that participants make complex trade-offs among multiple domains of uncertain and unknown risks. Overall, the highest-priority forest management objective for most stakeholders is the health and integrity of the forest ecosystem from which all other important forest values derive. The factor perceived as riskiest is our lack of knowledge of how forest ecosystems work, which hinders stakeholders in their assessment of AM's acceptability. These results are further evidence of the inherent risk in privileging natural science above other forms of knowledge at the science-policy interface. When decisions are framed as technical, the normative and ethical considerations that define our fundamental goals are made invisible.

Patient-centered research in pediatric transplant: Engaging families and recipients.

Pediatric liver transplant (LT) recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities and questions in LT have traditionally been provider-driven. This project was a novel partnership between a learning health system dedicated to pediatric LT (Starzl Network for Excellence in Pediatric Transplantation) and a parent-led advocacy group (Transplant Families) that aimed to prepare families and providers for collaborative patient-centered outcomes research (PCOR). We developed 5 virtual modules to (1) teach participants about PCOR, and (2) elicit ideas for PCOR priorities and processes in pediatric LT. Parents and providers participated via self-guided online modules or focus groups. Participants included 240 patient partners and 133 pediatric LT providers from 16 centers over 2 years. We held 20 focus groups, including 5 to amplify underrepresented voices: young adults, Spanish speakers, and African Americans. Feedback was summarized to create a PCOR Roadmap, a guide for future PCOR in the Starzl Network, which was disseminated back to participants online and via webinars. Feedback from a diverse group of stakeholders allowed us to develop PCOR priorities and processes for the pediatric LT community. Our engagement strategies could be adapted by other transplant communities to facilitate patient and provider research partnerships.

Stigma and discrimination and its homeless and health system contexts in south London: an ethnographic case study.

BACKGROUND: Stigma and discrimination are widely recognised as core social determinants of health. There is a gap in understanding how to intervene at societal and systems level to address stigma. This study aims to theorise how particular care and support systems shape experiences of stigma as it relates to homelessness, and to then develop systems-level interventions. METHODS: We present findings from an ongoing longitudinal ethnographic study, which started June 2022, in south London. Data collection included interviews with people managing, delivering, and using homelessness services (n=41 interviews, two focus groups); participant observation across a range of service settings (>70 h, principally in five sites), and documentary analysis. Participants and research sites gave informed consent. The study was framed by Bourdieu's social practice theory, which structures data collection and analysis around the power and resources individuals have within particular social contexts. We did the analyses using thematic and grounded approaches to qualitative data. FINDINGS: We found that across homeless and health services there was in-depth awareness of stigma and discrimination, but that, collectively, we are "stuck in a rut" in responding to stigma. A proximate challenge was limited clarity and agreement across systems on the nature of the issues involved. A deeper analysis also suggested specific organisational structures and ways of thinking within homelessness and health systems that limit collective discussion and agreement on social and systemic responses to stigma. We also collected data on how stigma was experienced, delineating different forms of stigma and discrimination and where and how they take shape, focusing on enacted, anticipated, and internalised stigma. We also explored how stigma was actively managed and overcome, and how different intersections of systems of inequality produce varying forms of stigma and discrimination. INTERPRETATION: Our study provides insight into how stigma and discrimination could potentially be addressed systemically within homelessness and health systems. The existing collective awareness of stigma and discrimination offers specific opportunities for generating systemic change. Study limitations include the focus on one geographic area of the UK, although we reflect on how our findings could be generalised to other settings. FUNDING: UK Research and Innovation.

Experiences of menopause in the Welsh NHS workplace: a focus group study.

BACKGROUND: Despite an increased desire to improve women's experiences, the evidence base around how best to support female employees experiencing the menopause is currently lacking. NHS Wales has a workforce with a significant proportion of older female workers, many of whom will experience menopause symptoms. This work aims to explore the impact of menopause symptoms on the working lives of NHS staff in Wales. METHODS: For this service improvement study, four focus groups were held between Jan 12, and March 10, 2023. Women who experienced symptoms related to menopause were invited to participate via a local women's network. 14 women with lived experience of menopause took part, with an average of three women per group. Informed consent was given by participants for this service improvement exercise. Participants worked in both clinical and non-clinical roles in the NHS in Wales. Participants were aged between 34 and 59 years. A semi-structured facilitation approach was used, with women asked to describe their menopause experience and their role in the organisation. Transcripts were analysed using the framework approach and reported using the COREQ reporting checklist. FINDINGS: Menopause symptom experience was multifaceted and varied and dependent on factors such as medical history, social support, and personal management strategies. All women involved in the focus groups felt that their symptoms had negatively impacted their experience. Various symptom management strategies had been used with varying levels of success. Some women were reticent to ask for support at work, despite believing the workplace response would be positive. INTERPRETATION: Peer support is well received by women in the workplace, but it is crucial that opportunities for peer support in the workplace are delivered in a culture where women feel they are able to step away from their core duties to attend and engage with opportunities such as Menopause Café's and lunchtime learning sessions. Further work is needed as participants in these focus groups might not be representative of the full NHS and broader workforce. Conducting focus groups entirely online might also have influenced the group dynamics. FUNDING: None.

Recording and analysing ethnicity in public health research: a bibliographical review and focus group discussions with young migrants and refugees in the UK.

BACKGROUND: The ethnicity data gap hinders public health research from addressing ethnic health inequity in the UK, especially for under-served young, migrant populations. We aimed to review how ethnicity was captured, reported, analysed, and theorised within policy-relevant research. METHODS: For this bibliographical review, we reviewed a selection of the 1% most highly cited population health papers reporting UK ethnicity data in MEDLINE and Web of Science databases between Jan 1, 1946, and July 31, 2022, and extracted how ethnicity was recorded and analysed. We included cross-sectional, longitudinal cohort studies, and randomised trials using only UK populations, which were peer-reviewed, were written in English, and reported ethnicity and any health-related outcomes. We held three focus groups with ten participants aged 18-25 years, from Nigeria, Turkistan, Syria, Yemen, and Iran to help us shape and interpret our findings, and asked "How should ethnicity be asked inclusively, and better recorded?" and "Does ethnicity change over time or context? If so, why?". We consolidated feedback from our focus groups into a co-created poster with recommendations for researchers studying ethnicity and health. Written informed consent was obtained for focus group participation. FINDINGS: Of 44 papers included in the review, 19 (43%) used self-reported ethnicity, but the number of ethnic categories provided varied. Of 27 papers that aggregated ethnicity, 13 (48%) provided justification. Only eight (18%) explicitly theorised how ethnicity related to health. The focus groups agreed that (1) ethnicity should not be prescribed by others (individuals could be asked to describe their ethnicity in free-text, which researchers could synthesise to extract relevant dimensions of ethnicity for their research) and (2) Ethnicity changes over time and context according to personal experience, social pressure, and nationality change. The lived experience of ethnicity of migrants and non-migrants is not fully interchangeable, even if they share the same ethnic category. INTERPRETATION: Researchers should communicate clearly how ethnicity is operationalised in their studies, with appropriate justification for clustering and analysis that is meaningfully theorised. Our study was limited by its non-systematic nature. Implementing the recommendation to capture ethnicity via free text remains challenging in administrative data systems. FUNDING: UCL Engagement Beacon Bursary.

Perceived barriers and facilitators for model-informed dosing in pregnancy: a qualitative study across healthcare practitioners and pregnant women.

BACKGROUND: Most women use medication during pregnancy. Pregnancy-induced changes in physiology may require antenatal dose alterations. Yet, evidence-based doses in pregnancy are missing. Given historically limited data, pharmacokinetic models may inform pregnancy-adjusted doses. However, implementing model-informed doses in clinical practice requires support from relevant stakeholders. PURPOSE: To explore the perceived barriers and facilitators for model-informed antenatal doses among healthcare practitioners (HCPs) and pregnant women. METHODS: Online focus groups and interviews were held among healthcare practitioners (HCPs) and pregnant women from eight countries across Europe, Africa and Asia. Purposive sampling was used to identify pregnant women plus HCPs across various specialties prescribing or providing advice on medication to pregnant women. Perceived barriers and facilitators for implementing model-informed doses in pregnancy were identified and categorised using a hybrid thematic analysis. RESULTS: Fifty HCPs and 11 pregnant women participated in 12 focus groups and 16 interviews between January 2022 and March 2023. HCPs worked in the Netherlands (n = 32), the UK (n = 7), South Africa (n = 5), Uganda (n = 4), Kenya, Cameroon, India and Vietnam (n = 1 each). All pregnant women resided in the Netherlands. Barriers and facilitators identified by HCPs spanned 14 categories across four domains whereas pregnant women described barriers and facilitators spanning nine categories within the same domains. Most participants found current antenatal dosing information inadequate and regarded model-informed doses in pregnancy as a valuable and for some, much-needed addition to antenatal care. Although willingness-to-follow model-informed antenatal doses was high across both groups, several barriers for implementation were identified. HCPs underlined the need for transparent model validation and endorsement of the methodology by recognised institutions. Foetal safety was deemed a critical knowledge gap by both groups. HCPs' information needs and preferred features for model-informed doses in pregnancy varied. Several pregnant women expressed a desire to access information and partake in decisions on antenatal dosing. CONCLUSIONS: Given the perceived limitations of current pharmacotherapy for pregnant women and foetuses, model-informed dosing in pregnancy was seen as a promising means to enhance antenatal care by pregnant women and healthcare practitioners.

Acceptability of data linkage to identify women at risk of postnatal complication for the development of digital risk prediction tools and interventions to better optimise postnatal care, a qualitative descriptive study design.

BACKGROUND: Pregnancy acts as a cardiovascular stress test. Although many complications resolve following birth, women with hypertensive disorder of pregnancy have an increased risk of developing cardiovascular disease (CVD) long-term. Monitoring postnatal health can reduce this risk but requires better methods to identity high-risk women for timely interventions. METHODS: Employing a qualitative descriptive study design, focus groups and/or interviews were conducted, separately engaging public contributors and clinical professionals. Diverse participants were recruited through social media convenience sampling. Semi-structured, facilitator-led discussions explored perspectives of current postnatal assessment and attitudes towards linking patient electronic healthcare data to develop digital tools for identifying postpartum women at risk of CVD. Participant perspectives were gathered using post-it notes or a facilitator scribe and analysed thematically. RESULTS: From 27 public and seven clinical contributors, five themes regarding postnatal check expectations versus reality were developed, including 'limited resources', 'low maternal health priority', 'lack of knowledge', 'ineffective systems' and 'new mum syndrome'. Despite some concerns, all supported data linkage to identify women postnatally, targeting intervention to those at greater risk of CVD. Participants outlined potential benefits of digitalisation and risk prediction, highlighting design and communication needs for diverse communities. CONCLUSIONS: Current health system constraints in England contribute to suboptimal postnatal care. Integrating data linkage and improving education on data and digital tools for maternal healthcare shows promise for enhanced monitoring and improved future health. Recognised for streamlining processes and risk prediction, digital tools may enable more person-centred care plans, addressing the gaps in current postnatal care practice.

Representation Matters: Trust in Digital Health Information Among Black Patients With Prostate Cancer.

PURPOSE: Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS: We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS: Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS: Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.

Navigating Living Kidney Donation and Transplantation Among South Asian Canadians: The ACTION Project.

RATIONALE & OBJECTIVE: South Asian (SA) Canadians with kidney failure have a 50%-77% lower likelihood of kidney transplant and are less likely to identify potential living donors (LDs). This study aimed to identify health system-, patient-, and community-level barriers and facilitators for accessing LD kidney transplantation in the SA community to inform the development of health system- and community-level interventions to address barriers. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 20 SA recipients of an LD or deceased-donor kidney transplant, 10 SA LDs, and 41 general SA community members. ANALYTICAL APPROACH: In-depth multilingual interviews were conducted with recipients and LDs. Gender-, language-, and age-stratified focus groups were conducted with general SA community members. Summative content analysis was used to analyze the data. RESULTS: Hesitancy in approaching potential donors, fear about the health of potential LDs, information gaps, language barriers, and challenges evaluating out-of-country donors were highlighted as significant barriers by recipients, and financial concerns and information gaps were identified by donors. Cultural barriers in the SA community were highlighted by donors, recipients, and community members as critical factors when considering donation and transplant; women and elderly SA Canadians highlighted nuanced challenges. Participants reported generally a favorable perception of their health care teams, citing SA representation in the teams as important to providing culturally and linguistically sensitive care. LIMITATIONS: Limited geographic, race, and cultural representation and reliance on virtual data collection. CONCLUSIONS: This study highlights several culturally relevant barriers to donation and transplant that are potentially modifiable through patient-, health system-, and community-focused engagement and education.

BREAST-Q REACT: Qualitative Assessment of the Design, Functionality, and Clinical Utility of a New Score Interpretation Tool.

BACKGROUND: The BREAST-Q real-time engagement and communication tool (REACT) was developed to aid with BREAST-Q score interpretation and guide patient-centered care. OBJECTIVE: The purpose of this qualitative study was to examine the perspectives of patients and providers on the design, functionality, and clinical utility of REACT and refine the REACT based on their recommendations. METHODS: We conducted three patient focus groups with women who were at least 6 postoperative months from their postmastectomy breast reconstruction, and two provider focus groups with plastic surgeons, breast surgeons, and advanced practice providers. Focus groups were audio-taped, transcribed verbatim, and analyzed thematically. RESULTS: A total of 18 breast reconstruction patients and 14 providers participated in the focus groups. Themes identified by thematic analysis were organized into two categories: (1) design and functionality, and (2) clinical utility. On the design and functionality of REACT, four major themes were identified: visual appeal and usefulness; contextualizing results; ability to normalize patients' experiences, noting participants' concerns; and suggested modifications. On the clinical utility of REACT, three major themes were identified: potential to empower patients to communicate with their providers; increase patient and provider motivation to engage with the BREAST-Q; and effective integration into clinical workflow. CONCLUSION: Patients and providers in this qualitative study indicated that with some modifications, REACT has a great potential to elevate the clinical utility of the BREAST-Q by enhancing patient-provider communication that can lead to patient-centered, clinically relevant action recommendations based on longitudinal BREAST-Q scores.

Internal Medicine Resident Addiction Training at the Veteran's Health Administration: A Qualitative Evaluation of Site Directors' Response to the 2022 ACGME Requirements.

BACKGROUND: Substance use disorders (SUDs) are prevalent in the USA yet remain dramatically undertreated. To address this care gap, the Accreditation Council for Graduate Medical Education (ACGME) approved revisions to the Program Requirements for Graduate Medical Education (GME) in Internal Medicine, effective July 1, 2022, requiring addiction medicine training for all internal medicine (IM) residents. The Veterans Health Administration (VHA) is a clinical training site for many academic institutions that sponsor IM residencies. This focus group project evaluated VHA IM residency site directors' perspectives about providing addiction medical education within VHA IM training sites. OBJECTIVE: To better understand the current state, barriers to, and facilitators of IM resident addiction medicine training at VHA sites. DESIGN: This was a qualitative evaluation based on semi-structured video-based focus groups. PARTICIPANTS: Participants were VHA IM site directors based at a VHA hospital or clinic throughout the USA. APPROACH: Focus groups were conducted using a semi-structured group interview guide. Two investigators coded each focus group independently, then met to create a final adjudicated coding scheme. Thematic analysis was used to identify key themes. KEY RESULTS: Forty-three participants from 38 VHA sites participated in four focus groups (average size: 11 participants). Six themes were identified within four pre-defined categories. Current state of training: most VHA sites offered no formal training in addiction medicine for IM residents. Barriers: addiction experts are often located outside of IM settings, and ACGME requirements were non-specific. Facilitators: clinical champions help support addiction training. Desired next steps: participants desired incentives to train or hire local champions and a pre-packaged didactic curriculum. CONCLUSIONS: Developing competent clinical champions and leveraging VHA addiction specialists from non-IM settings would create more addiction training opportunities for IM trainees at VHA sites. These insights can likely be applied to IM training at non-VHA sites.

Mapping Online Community Spaces Through Online Focus Group Discussions Among Gay, Bisexual, and Other Men Who Have Sex With Men in Guangdong, China: Implications for Human Immunodeficiency Virus/Sexually Transmitted Disease Prevention Services.

BACKGROUND: Chinese gay, bisexual, and other men who have sex with men (GBMSM) face discrimination in many facility-based health services, thus increasing the importance of online engagement. The purpose of this study was to examine online GBMSM community spaces and implications for HIV/sexually transmitted disease prevention services. METHODS: We conducted a total of 6 online focus group discussions with Chinese GBMSM from Guangdong province on the chat-based platform WeChat in 2021. Focus group discussions were asynchronous, and participants were able to provide and map out online spaces that they had participated in and share their perspectives on online engagement. Data were analyzed through framework analysis. RESULTS: Overall, 48 participants participated. Most were mainly sexually attracted to men (n = 43; 90.0%) and never participated in in-person LGBTQ-related events (n = 29; 60.4%). Participants articulated a typology of online spaces along the axes of whether such spaces were Chinese platforms (vs. non-Chinese) or whether they were GBMSM-specific (vs. non-GBMSM-specific). Participants articulated several advantages of online spaces, including greater anonymity, opportunities for community building, sharing of sexual health information, and being able to meet other GBMSM more efficiently. Drawbacks included the lack of personal connection, lack of safety measures for youth, encountering deception and the use of fake profile pictures, and needing a virtual proxy network to access some websites. Participants provided suggestions to further improve their experiences of online spaces. CONCLUSIONS: Although broad-based, GBMSM-specific messaging can be implemented in Chinese, GBMSM-specific spaces, sexual health messaging may also reach niche GBMSM communities in a variety of non-GBMSM spaces.

Exploring long-term cancer survivors' care experiences and unmet needs: protocol for a qualitative study.

BACKGROUND: The number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals. METHODS: To investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons. DISCUSSION: The qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.

"How can a woman live without having a breast?": challenges related to mastectomy in Ethiopia.

BACKGROUND: Although mastectomy is the standard treatment modality for breast cancer patients in Ethiopia, our previous study revealed that one in five patients do not receive the recommended procedure, half due to patient refusal or lack of returning to the hospital. Therefore, this study aimed to explore reasons for refusing mastectomy and identify challenges among breast cancer patients in Ethiopia. METHODS: An explorative qualitative study was conducted in four hospitals located in the towns of Woliso, Butajira, Hossana, and Assela. A total of 14 in-depth interviews (IDIs) and eight focus group discussions (FGDs) were held with breast cancer patients, patient relatives, and health professionals. Four semi-structured interview guides were used to facilitate the IDIs and FDGs. All recorded IDIs and FGDs were transcribed and translated verbatim and entered in NVivo 12 software. Emerging ideas were categorised and explained using an inductive content analysis approach. RESULTS: Our participants reported that particularly elderly and very young women refuse to have mastectomy. The main reasons identified in this study were summarised into six themes: (i) fear of the surgical procedure, (ii) religious beliefs and practice, (iii) utilisation of traditional treatments, (iv) in relation to having a baby and breastfeeding their children (young patients often request to remove only the lump, leaving their breast tissue intact), (v) lack of awareness about the disease, and (vi) sociocultural factors and advice from the community that influence women, since breasts are considered an attribute of femininity, beauty, and motherhood. In addition, knowing someone who died after mastectomy emerged as a main reason for not having breast cancer surgery. CONCLUSIONS: High refusal rate for mastectomy has direct implication on increased breast cancer mortality. Hence, expansion of radiotherapy service is instrumental to initiate breast-conserving surgery as an alternative surgical procedure, especially for young women with early-stage breast cancer. Involving religious leaders, traditional healers, and breast cancer survivors could be an effective strategy to persuade newly diagnosed breast cancer patients. Addressing individual patient psychosocial needs and preferences may substantially improve retention of breast cancer patients in the health system.

From decision to reflection: understanding the experiences and unmet care needs of patients treated with immunotherapy for melanoma in the adjuvant or metastatic setting.

BACKGROUND: Despite increased use of immune checkpoint inhibitors (ICIs) in patients with advanced melanoma, little is known about patient experiences during this treatment. This study aimed to gain an in-depth understanding of experiences and unmet care needs of patients treated in the adjuvant or metastatic setting for advanced melanoma regarding their ICI treatment trajectory. METHODS: Interviews and focus groups were conducted among 35 patients treated with ICIs in the adjuvant setting for completely resected stage III (n = 14), or in the metastatic setting for irresectable stage IV (n = 21) melanoma. A thorough thematic content analysis was conducted. RESULTS: Three main themes were identified. When (1) dealing with uncertainty in the decision-making process, adjuvant patients explored the pros and cons, whereas metastatic patients considered immunotherapy their only viable option. Both groups expressed the need for additional guidance. In (2) navigating the immunotherapy course, both perceived the trajectory as intense, experienced a major impact on their and their (close) relatives' lives, and felt the need to (re)gain control. When (3) looking back on the immunotherapy experience, metastatic patients generally felt relieved, while among adjuvant patients, feelings of doubt regarding their choice for ICIs were also reported. CONCLUSIONS: ICI treatment is perceived as intensive for both patient groups, facing both comparable and distinct challenges throughout the treatment trajectory, underscoring the need for stage-specific, individualised guidance. Options regarding flexible follow-ups, low-threshold contact and psychosocial support throughout the treatment trajectory should be explored.

Understanding referral of patients with cancer in rural Ethiopia: a qualitative study.

BACKGROUND: Cancer incidence is increasing in Ethiopia mainly due to increased life expectancy, while oncological capacities remain limited. Strong referral linkages between different levels of the healthcare system are key to provide timely access to cancer care. In this qualitative study, we assessed limitations and potential of cancer patient referral in the rural Southwest of Ethiopia. METHODS: We held four focus group discussions (FGD) with health professionals at one primary and three secondary hospitals and conducted eight in-depth interviews (IDI) with the hospitals´ medical executives and local health bureau representatives. Data was analysed inductively using thematic analysis and emerging themes were categorized within the revised concept of access by Penchansky and Saurman. RESULTS: The inevitable referral of patients with cancer in the rural Southwest of Ethiopia is characterized by the absence of clear communication protocols and the lack of formal referral linkages. The newly implemented hub-system has improved emergency referrals and could be expanded to non-emergency referrals, sensitive to the needs of advanced oncological care. Liaison officers can pave the way but need to be trained and equipped adequately. Referred patients struggle with inadequate transportation systems, the lack of accommodation close to specialized facilities as well as the inability to navigate at those sites due to language barriers, illiteracy, and stigmatization. Few Non-Governmental Organizations (NGOs) help but cannot compensate the limited governmental support. The shortage of medications at public hospitals leads to patients being directed to costly private pharmacies. In the light of those challenges, cancer remains to be perceived as a "death sentence" within the rural communities. CONCLUSIONS: Standardized referral linkages and a multi-faceted support network throughout the cancer care continuum are necessary to make oncology care accessible to Ethiopia´s large rural population.

Supporting the 'lived expertise' of older adults with type 1 diabetes: An applied focus group analysis to characterize barriers, facilitators, and strategies for self-management in a growing and understudied population.

INTRODUCTION: There is a growing number of older adults (≥65 years) who live with type 1 diabetes. We qualitatively explored experiences and perspectives regarding type 1 diabetes self-management and treatment decisions among older adults, focusing on adopting care advances such as continuous glucose monitoring (CGM). METHODS: Among a clinic-based sample of older adults ≥65 years with type 1 diabetes, we conducted a series of literature and expert informed focus groups with structured discussion activities. Groups were transcribed followed by inductive coding, theme identification, and inference verification. Medical records and surveys added clinical information. RESULTS: Twenty nine older adults (age 73.4 ± 4.5 years; 86% CGM users) and four caregivers (age 73.3 ± 2.9 years) participated. Participants were 58% female and 82% non-Hispanic White. Analysis revealed themes related to attitudes, behaviours, and experiences, as well as interpersonal and contextual factors that shape self-management and outcomes. These factors and their interactions drive variability in diabetes outcomes and optimal treatment strategies between individuals as well as within individuals over time (i.e. with ageing). Participants proposed strategies to address these factors: regular, holistic needs assessments to match people with effective self-care approaches and adapt them over the lifespan; longitudinal support (e.g., education, tactical help, sharing and validating experiences); tailored education and skills training; and leveraging of caregivers, family, and peers as resources. CONCLUSIONS: Our study of what influences self-management decisions and technology adoption among older adults with type 1 diabetes underscores the importance of ongoing assessments to address dynamic age-specific needs, as well as individualized multi-faceted support that integrates peers and caregivers.

Factors influencing participation in an online national diabetes prevention programme: A qualitative study with attenders and educators.

AIM: To explore factors affecting participation in the pilot of the synchronous online national diabetes prevention programme (NDPP) in Ireland from the perspectives of those who attended and the educators who recruited for and delivered the programme. METHODS: A qualitative study involving semi-structured interviews and focus groups with NDPP attenders (attended the assessment and at least one session) and educators (dietitians) on the programme. The Framework Method using the Theoretical Domains Framework (TDF) guided the analysis. RESULTS: Thirteen attenders took part in two online focus groups and five online or phone interviews. Eight educators took part. Four themes which cut across the TDF domains were identified as factors influencing participation; (i) lack of awareness of prediabetes and fear of diabetes, relating to attenders' fear of diabetes and lack of knowledge of prediabetes and diabetes prevention; (ii) perceived need for programme support to change health behaviour, concerning attenders' and educators' recognition of the need for the NDPP; (iii) trust in healthcare professionals (HCPs), relating to trust in HCPs to convey the seriousness of prediabetes and the value of diabetes prevention programmes (DPPs) and (iv) practical and personal ease of joining online, relating to the flexibility and accessibility of the synchronous online group format, the IT skills of attenders and educators and apprehension about group education. CONCLUSIONS: Raising awareness of prediabetes and the need for prevention programmes should be a priority for health services and HCPs. The synchronous online group format was seen as less daunting to join than a face-to-face programme and may be a useful option to encourage participation.

Towards a patient-centred definition for atopic dermatitis flare: a qualitative study of adults with atopic dermatitis.

BACKGROUND: The term 'flare' is used across multiple diseases, including atopic dermatitis (AD), to describe increased disease activity. While several definitions of an AD flare have been proposed, no single definition of AD flare is widely accepted and it is unclear what the term 'AD flare' means from the patient perspective. OBJECTIVES: To understand AD flares from the adult patient perspective and to explore how adults with AD define an AD flare. METHODS: Participants were adults with AD recruited from the National Eczema Association Ambassadors programme, a volunteer patient-engagement programme. They participated in online focus groups to discuss how they describe AD flares from their perspective, how they define its start and stop, and how they relate to existing definitions of flare. Using a grounded theory approach, transcripts were analysed and coded using an iterative process to identify concepts to support a patient-centred conceptual framework of 'flare'. RESULTS: Six 90-min focus groups of 3-8 participants each were conducted with 29 US adults (≥ 18 years of age) with AD who had at least one self-reported AD flare in the past year. When participants were presented with examples of previously published definitions of AD flare, participants found them problematic and unrelatable. Specifically, they felt that flare is hard to quantify or put on a numerical scale, definitions cannot solely be about skin symptoms and clinical verbiage does not resonate with patients' lived experiences. Concepts identified by patients as important to a definition of flare were changes from patient's baseline/patient's normal, mental/emotional/social consequences, physical changes in skin, attention needed/all-consuming focus, itch-scratch-burn cycle and control/loss of control/quality of life. Figuring out the trigger that initiated a flare was an underlying concept of the experience of flare but was not considered a contributor to the definition. CONCLUSIONS: The results highlight the complexity and diversity of AD flare experiences from the adult patient perspective. Previously published definitions of AD flares did not resonate with patients, suggesting a need for a patient-centred flare definition to support care conversations and AD management.

Atopic dermatitis (AD) is a skin disease that affects 10% of children and 7% of adults living in the USA. People living with AD experience inflamed, itchy skin with periods of worsening called 'flares'. To date, there have been many proposed definitions of flare; however, no definition describes the significant features of a flare as identified by those who have experienced flares first hand. The goal of this study was to create a new patient-informed definition of an AD flare. This patient-centred study was done by an international team of authors from the USA and Canada, including two authors from a patient advocacy organization and a person living with AD. We virtually interviewed groups of US adults with AD to discuss what flares meant to them. Themes that people living with AD felt were important to a flare definition included experiencing a change from a subjective baseline, physical changes of the skin, increased demand/focus on management of the skin, loss of control/quality of life, undergoing psychological/social consequences and the itch­scratch cycle. Flares were also associated with trying to figure out the cause of the flare. People with AD felt existing flare definitions did not reflect their experiences due to difficulty applying a numerical scale to their multidimensional experiences, definitions being exclusively about skin, and wording being too clinical and not relevant to their lived experience. The results of our study reveal important concepts of an AD flare from the patient perspective and highlight the diversity of features that define a flare. This patient-informed definition of flare can assist healthcare professionals in their delivery of care.