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INTRODUCTION: Vitiligo is an autoimmune disease, causing skin depigmentation. Individuals with vitiligo incur substantial psychosocial burden and have expressed frustration with their treatments. Here, we describe the burden of vitiligo and opinions on what constitutes meaningful change among participants of two qualitative interview studies. METHODS: Qualitative interviews were conducted with a subgroup of adolescent and adult participants with vitiligo from two pivotal phase 3 clinical trials of ruxolitinib cream (Study 1) and a real-world panel (Study 2). Participants were asked about their disease burden, treatment goals, importance of facial/body improvement (treatment satisfaction: scale range 0-10), and meaningfulness of change (yes/no). RESULTS: A total of 36 participants from Study 1 and 23 from Study 2 were interviewed. In Study 1, the highest degree of impact was on reduced self-esteem (facial lesions, 62.5%; body lesions, 55.6%), social inhibition (facial lesions, 65.6%; body lesions, 61.1%), and sun sensitivity (facial lesions, 31.3%; body lesions, 55.6%). Most participants (83.3%) reported that facial improvement was equally (36.1%) or more important (47.2%) than body improvement, with mean treatment satisfaction of 8.1 and 6.9, respectively. Meaningful change was reported by 83.3% and 92.9% of participants with 50-74% and ≥ 75% improvement per the facial Vitiligo Area Scoring Index, respectively, and by 82.6% of participants with ≥ 25% improvement per the total Vitiligo Area Scoring Index per Study 1 outcomes at Week 24. In Study 2, most (82.6%) participants felt that the noticeability of their vitiligo affected their behavior. Nearly all (87.0%) said that an ideal treatment would repigment or return natural color to their facial skin; 56.5% considered ≥ 50% facial repigmentation to be the smallest meaningful improvement. CONCLUSIONS: Participants from both qualitative interviews expressed substantial psychosocial burden. Repigmentation in both facial and body vitiligo were important, with meaningful change determined to be ≥ 50% facial repigmentation and ≥ 25% body repigmentation.

Vitiligo is an autoimmune disease that causes white patches to appear on the skin, affecting about 2% of people worldwide. People with vitiligo often have poor quality of life due to their disease and frequently do not believe that treatments work. We explored how people with vitiligo felt about their disease, and asked what hopes they had for treatment. Individual telephone interviews were conducted with 36 adolescents and adults with vitiligo from two clinical studies (Study 1) and 23 adolescents and adults with vitiligo from a real-world panel (Study 2) in the USA and Canada. Those from Study 1 said that their vitiligo caused them to have low self-esteem and to feel lonely. Most said that it was as important or more important to restore color to white patches on their face (i.e., repigmentation) than the body. Most achieving repigmentation of more than 50% on the face or more than 25% on the body were pleased with their treatment. In Study 2, most people said that their disease affected their behavior, and nearly all said that completely restoring color to their facial skin (i.e., 100% repigmentation) was important. Over half said that the smallest change they thought was important was more than 50% facial repigmentation. In short, people with vitiligo in two interview studies said that their vitiligo affected their quality of life. Most people with vitiligo in these studies reported that it was important to repigment more than 50% on the face and more than 25% on the body.

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BACKGROUND: Patients continue to face challenges accessing medication for opioid use disorder (MOUD) despite attempts to loosen prescribing restrictions and streamline service provision. Past research has mainly focused on potential barriers surrounding prescribing practices for buprenorphine, but has had limited investigation into the role of pharmacies. OBJECTIVE: This study investigates the role of both pharmacists and pharmacies in creating or circumventing barriers to accessing buprenorphine for individuals in Georgia seeking medication for opioid use disorder (MOUD). METHODS: Semi-structured interviews of pharmacists across 12 access and no access pharmacies were used to create a codebook of 179 discreet statements. The (N = 12) 20-35-minute phone interviews included questions addressing substance use, pharmacy practices, treatment, harm reduction, and psychoeducation. RESULTS: Pharmacists widely agreed that opioid use has caused negative effects on community members (N = 11), that buprenorphine formulation stocking decisions are made based on patient needs (N = 11), and that buprenorphine is relatively easy to stock (N = 10). Additionally, respondents generally stated that buprenorphine is a helpful tool for treating opioid use disorder (OUD) (N = 12) but some reported positive experiences while others reported challenging or negative experiences with patients receiving buprenorphine (N = 7). Finally, few (N = 4) pharmacists agreed that they could benefit from extra training despite many asserting that training is important to inform their own practice (N = 8). CONCLUSION: Results from respondents generally show that training may be beneficial for pharmacists to develop an enhanced understanding of addiction and treatment. Enhanced effort to stock different formulations or dosages of buprenorphine and develop relationships with prescribers may increase community access.

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INTRODUCTION: The EQ Health and Wellbeing (EQ-HWB) is a new questionnaire for measuring quality of life (QoL) from a broad perspective. The items of the EQ-HWB were derived based on a 'qualitative review' of literature, which reported primarily on Western studies. It can be argued that the QoL is a cultural-related concept and therefore people from China have a different understanding of the QoL. This study aimed to explore whether Chinese citizens could understand the EQ-HWB's candidate items and what they thought of those items. In doing so, we wanted to examine the face validity of the candidate items and explore if further cultural adaptation is necessary. METHODS: This research was part of the E-QALY project, in which 36 candidate items were selected for the EQ-HWB from a 97-item pool. In China, three interviewers investigated the face validity of these EQ-HWB candidate items in semi-structured qualitative face-to-face interviews. Respondents were invited to report 'problems' with regard to the interpretation of the items and these problems were grouped into themes. We explored to what extent those themes related to specific cultural aspects in China. We also classified the rates of reported problems for each item into three groups: 1) less than 20%, 2) from 20-50%, and 3) over 50%. RESULTS: For 17 items the rate of reported problems was less than 20%, 15 items fell into the second group (with 20 - 50%) and for 4 items the rate of problems reported was more than 50%. The thematic analysis revealed eight themes: ambiguous problems in the interpretation of 16 items; difficult to understand (11); contained a complex negative expression (10); examples used seemed inappropriate (7); misleading connotation in Chinese (2); long and complex (2); complex response options (1); and use of non-colloquial language (1). DISCUSSION: Our research shows that EQ-HWB candidate items require careful examination to make them more comprehensible. Most of the reported problem themes were generic problems related to the items, and only a few face validity issues appeared to relate to specific cultural aspects in China, even though most of the items were based on Western studies. Our findings are reassuring for the instrument's international application, especially in China.

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Interviews are central to the health ethnographers' toolkit. In this article, we offer a critical engagement with methodological literature coupled with reflective examples from our own research, in order to articulate the value of the ethnographic interview in health research. We contribute to literature on ethnographic interviews in two ways: by decoupling ethnographic interviews from the necessity of accompanying participant observation, and by outlining an ethnographic disposition towards interviewing. We define the seven key epistemic dispositions underpinning the ethnographic interview. These are humility, a readiness to revise core assumptions about a research topic, attentiveness to context, relationality, openness to complexity, an attention to ethnographic writing, and a consideration of the politics and history of the method. The strength of an epistemic understanding of the ethnographic interview is that it offers flexibility for developing a diverse array of interview techniques responsive to the needs of different research contexts and challenges. Ethnographic interviews, we show, contribute to the study of health through a richly explorative, responsive, contextualised, and reflexive approach.

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BACKGROUND: In the context of stigma and mental health research, limited empirical studies examine stigma through the positioning of individuals within interview contexts. This study addresses this gap by investigating the positioning processes in interviews with mothers with a mental illness, with a specific focus on the use of contrast devices as a strategy identified through analysis. By analysing how mothers position themselves through contrast devices and to which discourses they refer, this study provides insights into how stigmatising discourses are evident in the narratives of mothers with a mental illness. METHODS: This study is based on 20 semi-narrative interviews with mothers with a mental illness who participated in the Village Project (a pilot project co-created for children of parents with mental illness in Tyrol, Austria). Our analysis focuses on identifying stigmatising discourses related to motherhood and mental illness by examining the use of contrast devices in their accounts. RESULTS: The analysis shows insights into mothers' efforts to distance themselves from labels such as 'bad mother', 'not normal/crazy women' and 'weak person'. These positions often carry a gendered dimension, with motherhood emerging as a central position. Our study highlights the challenges mothers with a mental illness face in navigating societal norms and expectations related to motherhood during research interviews. CONCLUSION: The research contributes to a deeper understanding of mental health stigma in the context of motherhood, emphasising the importance of considering gendered dynamics and societal expectations in mental health research.

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CONTEXT: Risk stratification has been suggested as a strategy for improving cancer screening. Any changes to existing programmes must be acceptable to the public. OBJECTIVE: This study aimed to explore the preferences and considerations of individuals relating to the introduction of different risk-based strategies to determine eligibility for colorectal cancer (CRC) screening. STUDY DESIGN: Participants completed a discrete choice experiment (DCE) within online interviews. Nine conjoint-analysis tasks were created, each with two potential CRC screening programmes. The attributes included personal risk of CRC, screening invitation strategy and impact. Participants chose between programmes while thinking aloud and sharing their thoughts. Transcripts were analysed using codebook thematic analysis. PARTICIPANTS: Twenty participants based in England aged 40-79 years without previous cancer history or medical expertise. RESULTS: When choosing between programmes, participants first and primarily looked to prioritise saving lives. The harms associated with screening were viewed as a surprise but also felt by most to be inevitable; the benefits frequently outweighed, therefore, harms were considered less important. Risk stratification using individual characteristics was considered a nuanced approach to healthcare, which tended to be preferred over the age-alone model. Detailed personal risk information could be taken more seriously than non-personalised information to motivate behaviour change. Although it had minimal impact on decision-making, not diverting resources for screening from elsewhere was valued. Individuals who chose not to provide health information were considered irresponsible, while it was important that those with no information to provide should not lose out. CONCLUSION: Risk-stratified CRC screening is generally aligned with public preferences, with decisions between possible stratification strategies dominated by saving lives. Even if attributes including risk factors, risk stratification strategy and risk communication contributed less to the overall decision to select certain programmes, some levels more clearly fulfilled public values; therefore, all these factors should be taken into consideration when redesigning and communicating CRC screening programmes. PATIENT OR PUBLIC CONTRIBUTION: The primary data source for this study is interviews with 20 members of the public (current, past or future CRC screening invitees). Two public representatives contributed to planning this study, particularly the DCE.

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BACKGROUND: We report on our methodological experiences during an investigation of how institutional racism functions in healthcare. We found tension between balancing methodological rigor with the unanticipated consequence of interviewer burden. METHODS: Semi-structured interviews were conducted with patients. Interviews were recorded, transcribed verbatim, and qualitatively analyzed using thematic content analysis. Interviewers also participated in weekly debriefing sessions and reported experiences with patients. RESULTS: Interviewers repeatedly experienced negative encounters with white patients during interviews. Themes included privilege to avoid racism, denial of racism, non-verbal discomfort, falsely claiming Native identities, and intimidation. These experiences were most pronounced with Black interviewers. DISCUSSION: Interviewer burden may need to be a consideration taken up in a variety of research contexts.

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BACKGROUND: The Assessment of Burden of Chronic Conditions (ABCC-)tool is developed to facilitate a personalized approach to care in the patient-healthcare provider (HCP) conversation based on shared decision-making and individualized care plans. An effectiveness study highlighted its effect on the perceived quality of care and patient activation. Successful implementation of novel interventions necessitates an understanding of the user's actual application, user experiences and an evaluation of implementation outcomes. This study aims to evaluate the implementation of the ABCC-tool by HCPs in Dutch primary care. METHODS: This study is the process evaluation of a larger type 1 effectiveness-implementation hybrid trial. Semi-structured interviews with HCPs, who were interventionists in the hybrid trial, were held at three and twelve months after they started using the ABCC-tool. The Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) framework was used to evaluate implementation outcomes. The Implementation domain was further strengthened with an evaluation of implementation fidelity using Carroll's framework. Inductive coding and thematic analysis were applied to identify relevant participant experiences and implementation outcomes within the RE-AIM framework. RESULTS: Seventeen HCPs (1 general practitioner, 16 practice nurses) participated in the study, representing 39% of potentially eligible participants. Most HCPs applied the tool after finishing their own routines instead of how it is intended to be used, namely from the beginning of the consultation. HCPs reached 2-6 patients. The ABCC-tool was initially adopted, but twelve HCPs stopped using the tool due to COVID-19 related cancellation of consultations. High fidelity was found for applying the questionnaire and visualization. Low fidelity was present for applying shared decision-making, formulating care goals and monitoring progress. HCPs indicated that maintaning the ABCC-tool depended on accompanying training and implementation support. CONCLUSIONS: HCPs applied the ABCC-tool critically different from intended, potentially diminishing its benefits and ease of use. This evaluation stresses the need for a tailored implementation plan that includes more detailed training and guidance on how and when to use the ABCC-tool.

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BACKGROUND: Digital tools are progressively reshaping the daily work of health care professionals (HCPs) in hospitals. While this transformation holds substantial promise, it leads to frustrating experiences, raising concerns about negative impacts on clinicians' well-being. OBJECTIVE: The goal of this study was to comprehensively explore the lived experiences of HCPs navigating digital tools throughout their daily routines. METHODS: Qualitative in-depth interviews with 52 HCPs representing 24 medical specialties across 14 hospitals in Switzerland were performed. RESULTS: Inductive thematic analysis revealed 4 main themes: digital tool use, workflow and processes, HCPs' experience of care delivery, and digital transformation and management of change. Within these themes, 6 intriguing paradoxes emerged, and we hypothesized that these paradoxes might partly explain the persistence of the challenges facing hospital digitalization: the promise of efficiency and the reality of inefficiency, the shift from face to face to interface, juggling frustration and dedication, the illusion of information access and trust, the complexity and intersection of workflows and care paths, and the opportunities and challenges of shadow IT. CONCLUSIONS: Our study highlights the central importance of acknowledging and considering the experiences of HCPs to support the transformation of health care technology and to avoid or mitigate any potential negative experiences that might arise from digitalization. The viewpoints of HCPs add relevant insights into long-standing informatics problems in health care and may suggest new strategies to follow when tackling future challenges.

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Do Adolescents with Substance Use Disorders Recognize and Adopt Self-Regulation from Peers? - A Qualitative Interview Study Self-regulation often plays a central role for adolescents who develop a substance use disorder, as deficits may trigger the onset of the disease. Likewise, the improvement of self-regulation strategies is an important element of many therapy programs. Additionally, peers are important in the development of substance use disorders.The aim of this paper is to investigate the role of self-regulation by other peers in adolescents with substance use disorders through a qualitative interview study. For this purpose, a total of N = 13 (54 % female) adolescents were interviewed using semi-structured interviews, which were then evaluated using a qualitative content analysis according to Mayring.The results showed that the adolescents were familiar with the concept of self-regulation but did not name the interplay between cognitions, emotions, motivation, and behavior within self-regulation. Furthermore, the adolescents reported having observed and adopted both adaptive and maladaptive self-regulation strategies in others, placing the maladaptive strategies retrospectively before the start of therapy, while the adaptive strategies were rather placed during the therapy phase. This might partly explain the effect that peers pose a risk factor for the development of substance use disorders. However, peers might also be considered as a resource in therapeutic settings.

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[This corrects the article DOI: 10.3389/fpsyt.2024.1287096.].

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Objective: To explore the symptom experiences and influencing factors of gastrointestinal (GI) cancer patients on chemotherapy (CTX) in China. Methods: Semi-structured interviews were conducted with 13 GI cancer patients undergoing CTX. Following the Colaizzi 7-step analysis method, the interview data were read carefully, meaningful statements related to the research questions were extracted, coded, collected, and described in detail, and the authenticity of the theme was verified. Results: Nine themes were grouped into two main areas including the characteristics of symptom experiences and influences on symptom experiences. Conclusion: The symptom experiences of patients undergoing CTX for GI cancer is poor and influenced by multiple factors. Nurses need to pay attention to the assessment and monitoring of CTX-related symptoms, improve symptom recognition, enhance doctor-patient communication and social support, explore intelligent management methods, and increase the efficiency of healthcare services to improve patients' symptom experience.

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Individuals with severe mental illness and substance use disorders face complex barriers to achieving physical health. This study aims to explore the barriers and facilitators of primary care access among an Assertive Community Treatment (ACT) team. Semi-structured qualitative interviews were conducted with 14 clients and 7 clinicians from an ACT team at a community mental health center in Connecticut. Data analysis followed a grounded theory approach, with codes and themes emerging iteratively during the interview process. The study identified multifaceted barriers to accessing primary care, including economic challenges, homelessness, and the prioritization of mental health and substance use symptoms over healthcare. The conceptual framework consists of nine dominant themes: clients' attitudes, knowledge, mental health, and motivations ("Client-Level Barriers and Facilitators"); ACT team-directed care coordination and relationship-building as well as primary care provider communication ("Provider-Level Barriers and Facilitators"); and clients' experiences with medical care and socioeconomic status ("Systemic-Level Barriers and Facilitators"). This research provides valuable insights into the various barriers faced by ACT clients in accessing primary care. Improving primary care access for individuals with severe mental illness and substance use disorders is crucial for reducing health disparities in this vulnerable population.

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The increasing number of treatment options for patients with mantle cell lymphoma (MCL) and chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) in Japan underscores the critical need to comprehend their treatment preferences. In this study, individual semi-structured interviews with 20 Japanese patients with diagnosis of MCL or CLL/SLL were conducted and qualitatively analyzed to elicit concepts important for patients regarding treatment selection. Although effectiveness and safety were imperative for treatment selection, convenience and quality of life were also reported as important attributes. Over the course of their disease journey, patients reported diverse and changing preferences in terms of treatment characteristics. Additionally, there was a discrepancy between their desired and actual levels of involvement in shared decision-making with physicians about treatment choices. Optimal personalized care for better outcomes of patients with MCL and CLL/SLL hinges on healthcare professionals acknowledging individual patient needs and preferences within their cultural, societal and personal context.

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BACKGROUND: The impact of lower urinary tract symptoms (LUTS) on the quality of life of patients with benign prostatic hyperplasia (BPH) has been rarely reported. Additionally, the challenges faced by these patients in seeking medical care have often been overlooked. In order to explore the personal struggles caused by LUTS and the difficulties or barriers experienced by Chinese patients with BPH when seeking help, we conducted a qualitative interview study. METHODS: Qualitative interviews were conducted among 46 patients with BPH who were hospitalized in three tertiary hospitals in China from July 2021 to November 2022. Grounded theory was adopted as the methodology for the qualitative study. After obtaining written informed consent from the study participants, semi-structured interviews were conducted according to the question guidelines. The interview process was audio-recorded; subsequently, the recordings were transcribed, coded, and thematically analyzed. RESULTS: The difficulties faced by Chinese patients with BPH were classified into seven main themes: (i) disturbed life, (ii) mental burden, (iii) disease cognition and communication, (iv) delayed treatment, (v) medication status, (vi) hospital visits barriers, and (vii) medical insurance issues. Further, each theme was subdivided into 2-5 sub-themes. CONCLUSIONS: LUTS have a certain effect on the life and spirit of patients with BPH. These patients face different degrees of difficulties in treatment and hospital visits. Therefore, better healthcare systems and additional social support are crucial for improving the current plight of these patients.

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BACKGROUND: Intact cord resuscitation in the first three minutes of life improves oxygenation and Apgar scores. The practise of intact cord resuscitation implies the umbilical cord still being connected to the placenta for at least one minute while providing temperature control and equipment for resuscitation. Healthcare professionals described practical challenges in providing intact cord resuscitation. This study aimed to explore neonatal healthcare professionals' experiences of providing intact cord resuscitation in the mother's bed. METHOD: An interview study with an inductive, interpretative approach was chosen and analysed according to reflexive thematic analysis by Braun & Clarke. An open interview guide was used and 20 individual interviews with neonatal healthcare professionals were performed. The study was conducted at five level I-III neonatal care units. In Sweden, resuscitation is performed either in or outside the labour room. RESULTS: The results contributed insight into the participants' experiences of prerequisites for providing neonatal care in intact cord resuscitation. The sense of the mother's vulnerability was noticeable, as the participants reported reducing the risk of exposure to protect and preserve the mother's integrity. The practical challenges in the environment involved working in a limited space. The desire for multi-professional team training comprised education and training as well as debriefing to manage intact cord resuscitation. CONCLUSION: The result of the present study highlights the fact that neonatal healthcare professionals' experiences of providing ICR in the mother's bed were positive and had significant benefits for the neonate, namely zero separation between the neonate and parents and better physical recovery for the neonate. However, the fact that ICR in the mother's bed can be challenging in several ways, such as emotionally, managing environmental circumstances and ensuring effective team collaboration. Therefore, it is of the utmost importance that healthcare professionals are given the opportunity to reflect and train together as a team. Future recommendations are to summarize evidence-based knowledge to design guidelines for ICR situation.

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BACKGROUND: Chronic obstructive pulmonary disease (COPD) and muscle weakness can cause impaired physical function, significantly impacting patients' health-related quality of life (HRQoL). Loss of muscle strength is usually assessed through clinical and performance outcome (PerfO) assessments, which consists of tasks performed in a standardized manner, providing evidence of a patient's functional ability. However, evidence documenting the patient experience of COPD and muscle weakness is limited. METHODS: This two-stage qualitative study used semi-structured interviews in patients aged 45-80 years with COPD (post-bronchodilator forced expiratory volume in 1s [FEV1]/forced vital capacity ratio < 0.70, and FEV1% predicted of 30-80%) and muscle weakness. In Stage 1, 30-minute concept elicitation interviews were conducted with participants recruited across three US sites to explore impacts on physical functioning and activities of daily living. In Stage 2, interviews were performed with participants exiting a Phase IIa trial investigating the efficacy of a selective androgen receptor modulator (GSK2881078) on leg strength, whereby PerfOs were used to evaluate strength and physical functioning endpoints. These participants completed either 60-minute in-depth (n = 32) or 15-minute confirmatory (n = 35) interviews exploring trial experience, completion of outcome measures, disease experience and treatment satisfaction. RESULTS: In Stage 1 (n = 20), most participants described their muscles as weak (83.3%). Difficulties with walking (100%) and lifting heavy objects (90%) were reported. In Stage 2, 60-minute interviews, all participants (n = 32) reported a positive trial experience. Most participants reported that the home exercise program was easy to fit into daily life (77.8%), the PROactive daily diary was easy to complete (100%) and wearable sensors were easy to use (65.6%). However, technical issues were reported (71%), and few participants (19.4%) found physical assessments easy to complete. Improvements in muscle strength and functional limitations were reported by most participants. The shorter 15-minute confirmatory interviews (n = 35) supported the in-depth interview results. CONCLUSION: The qualitative interviews generated in-depth evidence of key concepts relevant to patients with COPD and muscle weakness and support the assessments of patient strength and physical function as outcome measures in this population in future studies. TRIAL NUMBER: GSK Stage 1: 206869; Stage 2: 200182, NCT03359473; Registered December 2, 2017, https://clinicaltrials.gov/ct2/show/NCT03359473 .

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PURPOSE: The purpose of this study was to explore ovarian cancer patients' preferences regarding follow-up care and, in particular, the use of patient-reported outcome measures (PROMs) as an approach to personalise follow-up care. METHODS: Between May and June 2021, semi-structured interviews were conducted with ovarian cancer patients, who had finished their primary treatment at least 6 months prior and were receiving follow-up care at our centre. Interviews were transcribed verbatim and analysed using an inductive thematic approach. A thematic flow chart was created describing interacting themes. RESULTS: Seventeen patients were interviewed, of which 11 were familiar with PROMs. Two key themes emerged from the data: the need for reassurance and the wish for personalised care. A follow-up scheme using PROMs was identified as a separate theme with the potential to personalise care. Several barriers and facilitators of PROMs were mentioned. CONCLUSIONS: Ovarian cancer patients have a desire for personalised follow-up care and seek reassurance. PROMs may be able to support both of these needs. Future research is needed to determine the most effective, patient-centred way to implement them. IMPLICATIONS FOR CANCER SURVIVORS: By understanding what patients' preferences are regarding follow-up care, more initiatives can be set up to personalise follow-up care, through which patient anxiety and dissatisfaction can be reduced.

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Purpose: The Diagnosis-Related Group (DRG) or Diagnosis-Intervention Packet (DIP) payment system, now introduced in China, intends to streamline healthcare billing practices. However, its implications for clinical pharmacists, pivotal stakeholders in the healthcare system, remain inadequately explored. This study sought to assess the perceptions, challenges, and roles of clinical pharmacists in China following the introduction of the DRG or DIP payment system. Methods: Qualitative interviews were conducted among a sample of clinical pharmacists. Ten semi-structured interviews were conducted, either online or face to face. Thematic analysis was employed to identify key insights and concerns related to their professional landscape under the DRG or DIP system. Results: Clinical pharmacists exhibited variable awareness levels about the DRG or DIP system. Their roles have undergone shifts, creating a balance between traditional responsibilities and new obligations dictated by the DRG or DIP system. Professional development, particularly concerning health economics and DRG-based or DIP-based patient care, was highlighted as a key need. There were calls for policy support at both healthcare and national levels and a revised, holistic performance assessment system. The demand for more resources, be it in training platforms or personnel, was a recurrent theme. Conclusion: The DRG or DIP system's introduction in China poses both opportunities and challenges for clinical pharmacists. Addressing awareness gaps, offering robust policy support, ensuring adequate resource allocation, and recognizing the evolving role of pharmacists are crucial for harmoniously integrating the DRG or DIP system into the Chinese healthcare paradigm.

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BACKGROUND: Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses questions of how to best deal with the process of genetic diagnosis and the communication of genetic information within a given health system. We co-created a research design with rare disease patients and their families in Austria to explore in-depth the experiences of genetic diagnosis for people affected by rare diseases. Our objective was to trace the whole pathway of genetic testing and understand how rare disease patients experience genetic diagnosis as part of their care pathway in the healthcare system. RESULTS: Data was collected through in-depth semi-structured qualitative interviews with 14 patients with a suspected or diagnosed rare disease or their parents, focusing on their perception of the pathway of genetic diagnosis in Austria. This pathway included the initial triggering of genetic diagnosis, the process of testing and its immediate (communication of results, counselling) and long-term, wider aftermath. Patients missed a clear link to already established forms of care such as their primary care/treating physicians. They also advocate for an integrated and interdisciplinary care pathway. CONCLUSIONS: Our study underscores the importance of a continuous care and communication pathway spanning from the initial genetic diagnosis process to post-test phases. It further shows the importance of exploring patients' perspectives through qualitative research methods to understand the intricate workings of public health policies and tools. Integrating genetic diagnosis into a broader care trajectory is crucial for a holistic approach to care for rare disease patients who often rely on regular interactions with the healthcare system. Achieving this holistic approach requires collaboration between experts in specific rare disease areas, primary care physicians, and support networks.

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