Patient Perspectives Research Articles

Cervical Cancer Screening: Patient Perspectives on Transitioning to Primary High-Risk Human Papillomavirus Testing Alone.

In 2018, the US Preventive Services Task Force updated cervical cancer screening recommendations to allow for screening every 5 years with primary human papillomavirus (HPV) testing in combination with cytology (cotesting) or every 5 years with primary HPV screening alone. Despite these changes, the uptake of primary HPV screening has been lower than expected. The purpose of this study was to evaluate the patient perspective of an integrated health system transition from cotesting to primary HPV testing among a 30- to 65-year-old cohort. Semistructured phone interviews were conducted from July to December 2023 at Kaiser Permanente Colorado with 16 members aged 30-65 years. Interviews asked about reactions to the forthcoming change in cervical cancer screening, personal concern about cervical cancer risk, feedback on patient-facing education materials, and preference on communication timing and modality. Participants reported concerns about cervical cancer screening intervals, primarily the reduction in frequency leading to underdiagnosis of sexually transmitted infections (STIs). Participants recommended defining the rationale for the change to primary HPV testing in the patient education materials. Participants preferred communication about the change in-clinic between practitioner and patient. The interviews identified key themes, including the differentiation between cervical cancer and STI screening methodologies, potential underdiagnosis of STI and cervical cancer, and the rationale supporting primary HPV testing and associated screening intervals. These qualitative findings can inform health systems of potential patient concerns to address when considering the transition from cotesting every 3 years to primary HPV testing every 5 years for cervical cancer screening.

A qualitative study of patient competence for patient engagement in their safety——from the perspective of nurses and patients

ObjectivesTo describe the essential competencies required for patient engagement in their own safety.MethodWe adopted a phenomenological approach in qualitative research to conduct semi-structured interviews with nurses (n = 14) and adult patients (n = 13) from different departments. By deeply exploring their experiences and feelings about patient engagement in patient safety, we sought to understand their views on the qualities that patients need to possess in order to participate in their own safety.ResultsFrom the interviews, we identified six major themes, including competence of information sharing, competence of taking patient engagement as responsibility and right, competence of making equal communication, competence of maintaining trust relationship with health personnels, competence of accepting non-punitive safety culture, need of resource support, five of them showed essential competences for patients and one of them showed patients’ need for promoting their engagement.ConclusionThe findings of this study show necessary competence and needs in patient engagement process of patient, offer a foundational reference for constructing a measurement tool for patient engagement in patient safety competence in the future, so that medical staff and patients can provide reference for the future targeted construction of patient competence improvement programs. At the same time, improving patient competence and engagement to better achieve safety goals requires the joint efforts of patients, medical staff, medical institutions, the government, and society.

Initial symptoms and late complication in Lyme neuroborreliosis from the perspective of patients and relatives: a qualitative study

BackgroundLyme borreliosis is by far the most common vector-borne infection in Western Europe. The most severe manifestation of Lyme borreliosis is Lyme neuroborreliosis (LNB). In LNB symptoms vary from mild to severe and may include late complications that involve both physical and/or neurocognitive constraints. An estimated 25–28% of the LNB population suffers from late complications. This study investigates patient and relative perspectives on everyday life with LNB symptoms, diagnosis, and treatment to identify areas for improvement of healthcare.MethodsA focus group was conducted at Odense University Hospital, Denmark. The focus group comprised 16 participants, nine patients diagnosed with LNB who had been treated at the Clinical Center for Emerging and Vector-borne Infections, and seven relatives of the patients’ choice. The focus group lasted 2 ½ hours and was audio recorded as well as documented in field notes.ResultsData analysis was grounded in the conceptual framework of critical psychology and resulted in three main themes: (1) Burden of LNB symptoms in everyday life, (2) A break in the conduct of everyday life caused by LNB and (3) Need for transparent pathways to specialist knowledge.ConclusionsBefore diagnosis and treatment, each patient reported varying degrees of non-treatable pain, and cognitive and/or musculoskeletal symptoms. Visible physical symptoms were rare. All patients had experienced that their bodily symptoms remained unaddressed throughout numerous encounters with the healthcare system. The course of LNB comes with a break in patients’ everyday lives and self-understandings affecting their ability to work and manage everyday activities. Patients and relatives strongly recommend a specialised LNB clinic.

84 Methods to screen caregivers for previous and current substance use in the paediatric office: A scoping review

Abstract Background Paediatric healthcare providers have been shown to miss opportunities to screen caregivers for substance use. Individuals who use or have used substances face general healthcare barriers and may disengage with the system to avoid stigma or discrimination. Poorly worded or administered substance use screening practices by paediatricians could lead to retraumatization or judgment of caregivers that may affect the ability to continue providing healthcare to the child. There is limited information in the literature regarding best approaches for screening caregivers for substance use in paediatrics. Objectives The unique objective of this review was to identify current methods for, approaches to, and acceptability of caregiver substance use screening in paediatric offices. Design/Methods Searches were performed in CINAHL, PsycInfo, MEDLINE, and Social Sciences Abstracts databases with results limited from 2000 to 2023. Keywords included “perinatal”, “postnatal” “paediatric OR paediatric”, “substance use” OR “substance abuse” OR substances OR “alcohol use” OR “alcohol abuse” OR “addiction”, AND “screening”. Studies must have been conducted in Canada, the USA, Australia, or Scandinavia. Literature that was published in a language other than English, described screening caregivers for substance use using biological samples, or that focused solely on screening pregnant caregivers for substance use was excluded. Individual approaches to and provider and patient perspectives on screening were identified. Three authors completed title, abstract, and full text screening in Covidence screening software. Qualitative thematic coding identified geographical setting, the specific paediatric clinical setting, substances for which each study screened, characteristics of the participants, method of screening, and feedback related to acceptability, outcomes, or methods of screening. Results Practitioners used standardized and informal substance use screening tools. This review found that paediatric practitioners reported gaps in guidance on how best to screen caregivers for substance use and a desire for more improvement. Lack of guidance made it uncomfortable to screen caregivers. Increased comfort with screening was noted when a social needs survey was used as guidance. Caregivers were generally highly comfortable being screened for substance use and felt it was an acceptable action for paediatricians to undertake. However, the input of families in caregiver substance use screening methods was otherwise lacking. Substance use questions were often paired with questions asking caregivers to rate acceptability while other studies simply used the openness of being approached or absence of objections as acceptance of being screened. None of the studies identified in this review included the ability for families to participate more fully in screening acceptability or design. Conclusion Family engagement in research regarding the ideal acceptability and design of screening methods is lacking while paediatric healthcare providers continue to be uncomfortable screening caregivers for substance use and wish for improved methods that facilitate trust with families. Further research into the design of trauma-informed caregiver substance use screening in paediatric settings may be needed.

Statistical properties of items and summary scores from the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE®) in a diverse cancer sample.

The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE®) was developed to capture symptomatic adverse events from the patient perspective. We aim to describe statistical properties of PRO-CTCAE items and summary scores and to provide evidence for recommendations regarding PRO-CTCAE administration and reporting. Using data from the PRO-CTCAE validation study (NCT02158637), prevalence, means, and standard deviations of PRO-CTCAE items, composite scores, and mean and maximum scores across attributes (frequency, severity, and/or interference) of symptomatic adverse events were calculated. For each adverse event, correlations and agreement between attributes, correlations between attributes and composite scores, and correlations between composite, mean, and maximum scores were estimated. PRO-CTCAE items were completed by 899 patients with various cancer types. Most patients reported experiencing one or more adverse events, with the most prevalent being fatigue (87.7%), sad/unhappy feelings (66.0%), anxiety (63.6%), pain (63.2%), insomnia (61.8%), and dry mouth (60.0%). Attributes were moderately to strongly correlated within an adverse event (r = 0.53 to 0.77, all p < 0.001) but not fully concordant (κweighted = 0.26 to 0.60, all p < 0.001), with interference demonstrating lowest mean scores and prevalence among attributes of the same adverse event. Attributes were moderately to strongly correlated with composite scores (r = 0.67 to 0.97, all p < 0.001). Composite scores were moderately to strongly correlated with mean and maximum scores for the same adverse event (r = 0.69 to 0.94, all p < 0.001). Correlations between composite scores of different adverse events varied widely (r = 0.04 to 0.68) but were moderate to strong for conceptually related adverse events. Results provide evidence for PRO-CTCAE administration and reporting recommendations that the full complement of attributes be administered for each adverse event, and that attributes as well as summary scores be reported.

02 Youth perspectives on virtual healthcare appointments in Nova Scotia – a qualitative study

Abstract Background With the onset of the COVID-19 pandemic, public safety measures required healthcare providers to look for alternative ways of delivering care in a safe and timely fashion. This led to an escalated use of virtual appointments to continue to provide patient care. For future decision-making regarding virtual care in our community, we must consider the youth perspective to ensure our healthcare delivery meets the needs of this patient population. Objectives Our study aims to determine the perspectives of local youth patients on their experience with virtual and in-person paediatric clinic appointments. Design/Methods Participants were recruited from general and subspecialty paediatrics clinics at the IWK Health Centre, in Nova Scotia, Canada. Eligibility criteria included attending both a virtual and in-person appointment from 2019-2022. Participants completed a semi-structured interview and provided their perspective on comfort level, accessibility, participation, and general preferences between virtual and in-person clinics. Transcribed data was analyzed using thematic analysis with both inductive and deductive approaches to identify themes. Results 12 participants aged 14-18 provided interviews. Participants represented clinical areas of general paediatrics, rheumatology, diabetes clinic and gender clinic. Virtual appointments were preferred for convenience, flexibility, and efficiency during shorter conversations. In-person appointments were preferred for physical concerns, communication and relationship building. Some youth appreciated talking face-to-face for the ease of communication, feeling able to “get the point across” in this setting. The value of the in-person connection with their healthcare team was expressed by some youth, and building this relationship held importance. When appointments provided education, youth preferred for that information to be delivered in-person. Participants overall felt more comfortable during virtual appointments, and participation levels varied based on the individual and not based on an appointment being virtual versus in-person. Accessibility issues were predominantly associated with in-person appointments, with barriers including access to transportation, time spent attending appointment, and the cost of travelling to a tertiary care centre. Conclusion Youth patients have unique and individual preferences for virtual versus in-person appointments. This study provided insight into situations when each appointment type should be considered and emphasizes the importance of including the youth in the decision-making process around appointment scheduling when possible.

40 Trust, belonging and understanding - The experiences of families who use languages other than English (LOE) that are hospitalized on general paediatric inpatient units

Abstract Background Despite recognition that social determinants are critical to health outcomes, many groups, including those with lower incomes, racial/ethnic minorities, and other historically marginalized populations, continue to experience significant social and structural barriers to care. There is need for research that incorporates patient and stakeholder engagement in developing, testing, and disseminating interventions to improve outcomes for patient populations that have been marginalized in the health system. Patients who use a language(s) other than English (LOE) for healthcare communication are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in paediatric hospitals. Canadian census data indicates 12.7% of Canadians predominantly speak a language other than French or English. This work aims to generate knowledge to improve health outcomes for children and families who speak LOE. Objectives (1) To understand the lived experience of families who speak LOE around the hospitalization of their child and (2) To understand the perspectives of patients and families who speak LOE on how the healthcare system can improve care during hospitalization. Design/Methods The premise of this study is participatory research. We designed a qualitative study involving children hospitalized in the General Paediatric Inpatient Unit at the Hospital for Sick Children. The study includes family caregivers of children age 0 to 18 years who identify as speaking LOE. Children and families could speak any language that we were able to obtain interpreter support for. We excluded patients that spoke a traditional Indigenous language as we noted this work required a separate study in partnership with the Indigenous community. We conducted semi-structured virtual individual interviews with children and families post-discharge with a medical interpreter. An interview guide was developed and transcripts were analyzed using thematic analysis. We took several steps to ensure an effective study design given our goals of participatory research including ensuring patient and family engagement throughout the design process. Results 19 families participated in the interviews and 16 different languages were represented amongst our participant groups. Our study is unique in especially unique in it's ability to recruit and interview individuals with so many different primary languages. Our study provides rich insight into opportunities within the paediatric inpatient setting for quality improvement to address the health disparities experienced by patients and families who use LOE for healthcare communication. Our analysis of the interviews identify several themes that provide insight into the lived experience of patients and families who use LOE for healthcare communication. 1) Inconsistent interpreter use affects communication “in the moment” and the ability to develop an “overall understanding” of the current clinical situation and broader healthcare context. Our participants note a "snowball effect" when interpreters are not consistently utilized. 2) In addition to language, multiple additional social factors contribute to an increased sense of vulnerability and modulates how families “trust” the healthcare system. 3) Despite families expressing positive experiences, they noted that they did not, nor expect to feel like they “belonged” within the healthcare system. It is critical to recognize the complex interplay between many factors surrounding our participants’ identities. Though they use a LOE for healthcare, the intersectional marginalization they experience was thoroughly represented during our conversations Conclusion Our research aimed to take a participatory approach to consider the lived experience of patients and families who use LOE for healthcare communication. This work builds on the current literature on patient and family centered care, experiences of families who speak LOE and participatory community-based research in the paediatric hospital settings. Our study's findings support the development of a research and intervention agenda in Canada to improve health outcomes for patients and families with LOE.

Experiences across a genetic screening and testing programme pathway: a qualitative study of mammogram patient perspectives

BackgroundPopulation-based genetic screening and testing programmes have substantial potential to improve cancer-related outcomes through early detection and cancer prevention. Yet, genetic testing for cancer risk remains largely underused. This study...

Factors influencing delayed cancer health seeking in Meghalaya, Northeast India: A qualitative study

Background &amp; objectives India accounts for about seven per cent of the global cancer burden with the highest cancer incidence reported from the North-Eastern Region (NER), including Meghalaya. Despite this, there is paucity of published studies on health seeking behaviour for cancer in the NER. To address this gap, this study used a qualitative approach to document patient, caregiver and provider perspectives to understand the factors influencing healthcare seeking for cancers in Meghalaya. Methods In-depth interviews were undertaken with 37 individuals diagnosed with one of the top five cancers in Meghalaya, namely, oesophageal, breast, oral, cervical and lung cancer. They were identified from the State referral cancer hospital. Twelve caregivers and five healthcare providers were also interviewed. All interviews were conducted in the local language using semi-structured interview guides. Transcripts were translated to English, coded, categorized and analyzed using thematic framework content analysis approach. Results A key factor influencing delayed cancer treatment in Meghalaya included misconceptions regarding the causes of cancer and cultural concepts such as bih and skai (Khasi language), i.e. notions of a figurative ‘poison’ or ill intent that makes one susceptible to illness. A general reluctance to discuss cancer diagnoses, perceived stigma, apprehension of treatment methods influenced their decision. Other factors included negligence and misinterpretation of early symptoms of cancer, self-management, preference for traditional medicines, financial constraints and health system-related factors. Interpretation &amp; conclusions This study underscores the importance of addressing barriers to cancer diagnosis and treatment in indigenous populations in northeast India, advocating for culturally appropriate messaging, capacity building for healthcare workers, integration of traditional healers, and community involvement to enhance early healthcare seeking and improve outcomes.

Confronting Craniosynostosis: Maternal Concerns, Challenges, and Coping for their Children.

The study objective was to characterize shared online experiences surrounding craniosynostosis. Isolated and syndromic craniosynostosis-related consecutive posts (N = 700) made by patients and caregivers were extracted from TikTok and Instagram between 2017-2024. A cross-sectional qualitative analysis following guidelines for practical thematic analysis was performed. The majority of posts were by caregivers (96%) and by females (97%). Forty categorical subthemes from social media posts were synthesized into 4 predominant themes. Overarching thematic trends included Emotional and Psychological Support (47%), Medical Information and Treatment (27%), Family and Social Dynamics (15%), and Awareness, Education, and Advocacy (12%). Social media is used by caregivers, primarily mothers, for emotional support, processing health information, sharing experiences, raising awareness, and celebrating "cranioversaries." Male and patient perspectives were underrepresented. Physicians may use social media to gain insights, disseminate quality health information, and connect with patients.

The WEIRD Trio: The Cultural Gap between Physicians, Learners, and Patients in Pluralistic Societies.

Physicians are shaped by sociological and philosophical factors that often differ from those of their patients. This is of particular concern in pluralistic societies when navigating ethical disagreements because physicians often misunderstand or even dismiss patient perspectives as being irrational. This paper examines these factors and why many physicians approach ethics as they do while elucidating various patient perspectives and demonstrating how they make sense when considered from a different cultural worldview. Many physicians are trained in contexts that are WEIRD: Western, educated, industrialized, rich, and democratic. These sociological characteristics tend to go hand in hand with the trio of individualism, secularism, and existentialism. These then shape an approach to ethics that focuses on the individual patient, makes no reference to the divine, and focuses on a patient's personal desires. This contrasts significantly with many patients who are collectivistic or religious, and then make rational decisions based on other values. The social fact of pluralism implores physicians to temper confidence in their own cultures while considering others to promote mutual understanding and improved care. This paper concludes with a discussion of how bridges can be built across cultures without sliding into relativism, beginning with recognizing and communicating our shared moral intuitions.

Replacing hospital nurse consultations with home-based nurse consultations for severe spasticity patients on intrathecal baclofen: a qualitative study

Aim This qualitative study explored the experiences of patients, caregivers and healthcare professionals after replacing hospital consultations with a home service solution for patients treated for severe spasticity with intrathecal baclofen. Method Semi-structured interviews were conducted with six patients, six caregivers and six healthcare professionals. The data were analysed using interpretative phenomenological analysis. Results Four themes were identified: 1) Caregivers’ new role and contribution to treatment, 2) Hospital consultations in home settings changed the balance of power, 3) A compassionate relationship, and 4) Contextual care for patients. Conclusion The home-based consultations improved caregivers’ understanding of the treatment and helped them to become active spokespersons for the patient by contributing important information about the patient’s perspectives and the effects of the treatment. The balance of power shifted towards a more equitable dynamic between patients and nurses during home consultations, facilitated by greater involvement of the patient perspective. The nurses’ working conditions changed, but patients and caregivers appreciated the shift in treatment setting.

Sources of meaning and hope and associated well‐being among psychotherapy clients: A practice‐based mixed method study

AbstractBackgroundDespite the recognition of meaning and hope as salient for many individuals in mental health treatment, little empirical attention has been given to patient perspectives. Research has primarily looked at the presence—or absence—of meaning and hope, and associations with symptom distress and suicidality.AimsThese constructs are multi‐faceted and influenced by social, cultural and spiritual/religious contexts. Understanding where clients draw meaning and hope from can provide valuable information to inform case formulation, treatment planning and intervention.Materials and MethodsThis mixed method practice‐based study (N = 233) in an outpatient community clinic (a) elucidated key areas that fuel clients' sense of meaning and hope and (b) explored associations with well‐being.ResultsQualitatively, we identified six domains through thematic analysis: interpersonal, action‐based, transcendent, intrapersonal, environmental/contextual and lacking/searching. A sub‐set of clients also emerged who were lacking in and/or searching for meaning or hope. Quantitatively, one‐way ANOVA results indicated that source diversity was associated with greater well‐being.DiscussionFindings illustrate that patients draw from culturally and spiritually embedded sources to construct meaning and hope in their lives, with distinctions between areas most salient for meaning, hope and both. Furthermore, having fewer sources of meaning and/or hope may represent a well‐being liability.ConclusionTherapists should pro‐actively explore and consider ways to bolster patients' sources of meaning and hope, considering evidence of implications for well‐being outcomes.

Differences Between Intravenous and Subcutaneous Modes of Administration in Oncology from the Patient, Healthcare Provider, and Healthcare System Perspectives: A Systematic Review.

While patients with cancer have traditionally received oncology treatments through intravenous (IV) administration, some therapies are becoming available via alternative modes of administration, such as subcutaneous (SC). This study aimed to evaluate IV versus SC therapy administration from the perspectives of the patient, healthcare provider (HCP), and healthcare system. A systematic review was conducted, searching MEDLINE and Embase databases from 2000 to 2022. This was supplemented with grey literature searches of additional sources such as conference proceedings. Observational studies and clinical trials were included if they assessed adult patients with any cancer type who were treated with pharmacologic therapies administered via IV or SC and included patient- or HCP-reported outcomes or healthcare system perspectives on the mode of administration. Records identified by the literature search were screened by two independent reviewers. Included studies were data extracted by a single reviewer and validated by a second reviewer and synthesized using a narrative approach. After screening, 33 unique studies were included in the systematic review. Patients and HCPs reported substantially more favorable preference rates for SC over IV treatment. Additionally, from the patient perspective there were reductions in treatment time and economic burden for SC compared with IV therapy. From the HCP's perspective, treatment time was consistently reduced by SC compared with IV treatment administration. Although information on the impact of SC and IV treatments for oncology on healthcare systems was limited, the use of SC formulations showed consistent cost savings (direct costs) and time savings from this perspective considering various uptake scenarios compared with IV administration. Compared with IV administration, SC oncology treatment is a preferred option by patients and HCPs, increasing optionality and reducing treatment time while simultaneously increasing capacity and reducing the financial burden on healthcare systems.

A Podcast on Patient and Physician Perspectives on the Management of Endometriosis and Relugolix Combination Therapy.

Endometriosis is a common disease, affecting approximately 5-10% of reproductively aged women. Symptoms, such as painful periods, negatively impact an individual's quality of life; however, these symptoms are often normalized, leading to delays in diagnosis and treatment, and worsening of the disease. In this podcast, a reproductive endocrinologist (Dr Sanjay K Agarwal) and patient advocate (Tara Mangum) provide their perspectives on the diagnosis and management of endometriosis. They also discuss Relugolix combination therapy as a treatment option for patients with endometriosis.Podcast available for this article.

People at Risk of, or with Cardiovascular Diseases’ Perspectives and Perceptions of Physiotherapist-Led Health Promotion in Cameroon: A Mixed-Methods Study

Cardiovascular diseases (CVDs) and their risk factors are a major cause of illness and death worldwide, especially in low- and middle-income countries like Cameroon. Physiotherapist-led health promotion (PLHP) has proven effective in improving health and reducing CVD risks. Understanding patient perspectives is crucial for designing effective, context-specific PLHP interventions. This study explored patients’ views, experiences, perceived usefulness, acceptability, and preferred methods of PLHP, through a sequential explanatory mixed-methods approach. The quantitative data highlights a significant burden of CVD conditions and risk factors among patients seen in physiotherapy services. Qualitatively, three themes were identified and included: (1) perspectives and experiences of people at risk or with CVDs (pwCVDs) on PLHP; (2) perceived usefulness and acceptability of PLHP; (3) preferred delivery methods of PLHP. Participants reported positive feedback on PLHP and physiotherapy services. Barriers to effective PLHP included high workloads for physiotherapists, limited service access in rural areas, and prohibitive costs. Despite these challenges, participants expressed strong confidence in physiotherapists’ competence, though they also called for improved regulation and ongoing professional development. PLHP components, especially physical treatment and dietary advice, were deemed highly useful and acceptable. Patients suggested various delivery methods, including peer support groups, home visits, and mass media interventions. This study highlights the need to improve the scope of practice, competence of physiotherapists, and accessibility of physiotherapy services in Cameroon for pwCVDs. It is necessary to adopt multidisciplinary approaches to achieve better outcomes for risk factors like diabetes and hypertension in context.

Uncovering Diaphragm Cramp in SIDS and Other Sudden Unexpected Deaths.

The diaphragm is the primary muscle of respiration. Here, we disclose a fascinating patient's perspective that led, by clinical reasoning alone, to a novel mechanism of spontaneous respiratory arrests termed diaphragm cramp-contracture (DCC). Although the 7-year-old boy survived its paroxysmal nocturnal "bearhug pain apnea" episodes, essentially by breathing out to breathe in, DCC could cause sudden unexpected deaths in children, especially infants. Diaphragm fatigue is central to the DCC hypothesis in SIDS. Most, if not all, SIDS risk factors contribute to it, such as male sex, young infancy, rebreathing, nicotine, overheating and viral infections. A workload surge by a roll to prone position or REM-sleep inactivation of airway dilator or respiratory accessory muscles can trigger pathological diaphragm excitation (e.g., spasms, flutter, cramp). Electromyography studies in preterm infants already show that diaphragm fatigue and sudden temporary failure by transient spasms induce apneas, hypopneas and forced expirations, all leading to hypoxemic episodes. By extension, prolonged spasm as a diaphragm cramp would induce sustained apnea with severe hypoxemia and cardiac arrest if not quickly aborted. This would cause a sudden, rapid, silent death consistent with SIDS. Moreover, a unique airway obstruction could develop where the hypercontracted diaphragm resists terminal inspiratory efforts by the accessory muscles. It would disappear postmortem. SIDS autopsy evidence consistent with DCC includes disrupted myofibers and contraction band necrosis as well as signs of agonal breathing from obstruction. Screening for diaphragm injury from hypoxemia, hyperthermia, viral myositis and excitation include serum CK-MM and skeletal troponin-I. Active excitation could be visualized on ultrasound or fluoroscopy and monitored by respiratory inductive plethysmography or electromyography.

Treatment preference archetypes in eosinophilic esophagitis and their implications for therapy.

Little is known about how patients make decisions about and prioritize, therapies and disease management in eosinophilic esophagitis (EoE). We aimed to systematically identify and characterize patient perspectives and attitudes that influence decision making for EoE management. To understand the diverse attitudes and values of EoE patients, we designed a study using the Q-method. We iteratively developed 31 statements related to EoE disease management. Participants sorted statements by ranking from +4 (most agree) to -4 (most disagree). By-person factor analysis, using 2- and 3- factor rotation, revealed distinct preference archetypes. Thirty-four adults with EoE (mean age 40.9, 51.4% male, 82.9% White) were recruited from gastroenterology and allergy clinics from a single center. We identified two treatment-centered archetypes: Medication preference, driven by symptoms and the desire to minimize risk of complications, and Natural treatment preference, focusing on identifying trigger foods and diet adherence. Three-factor analysis revealed an additional archetype: Treatment ambivalent, a view of EoE as a mild and episodic (not chronic) disease with low priority to treat. Comparison by factor revealed 54% of those in the natural preference archetype were recategorized as treatment ambivalent, suggesting that they see natural treatment as a less complicated or milder strategy and may be at risk of nonadherence and reduced treatment uptake. We identified three distinct treatment preference archetypes among individuals with EoE, underscoring the need for personalized treatment strategies, especially for those favoring natural approaches but masking ambivalence, and may be at risk for nonadherence or loss to follow-up.

Communication Skills of Medical Interpreters: A Qualitative Explanatory Study of Healthcare Professionals' and Medical Interpreters' Perceptions.

Background/Objectives: Medical interpreters support communication between medical professionals and foreign patients. However, the communication skills required of medical interpreters in the field are currently unclear. The purpose of this study was to investigate what medical professionals and medical interpreters consider to be most important communication skills of medical interpreters, and whether there are differences in perceptions between medical professionals and medical interpreters. Methods: From December 2023 to February 2024, we interviewed 10 medical professionals and medical interpreters (five medical professionals and five medical interpreters) working throughout Japan and in the United States. The narratives collected in the interviews were analyzed and evaluated in a conceptual framework. Results: Healthcare professionals and medical interpreters exhibited differences in perceptions regarding the most important communication skills for medical interpreters. The narratives of medical professionals and medical interpreters regarding medical interpreters' communication skills were divided into a 2 × 2 grid consisting of four quadrants with two axes (intervention and perspective). Regarding the communication skills of medical interpreters, medical professionals were primarily concerned with the transmission of medical information and felt that it was necessary for interpreters to understand medical professionals' perspectives and what they wanted to say in order to convey it accurately. In contrast, medical interpreters emphasized the importance of empathy and communication skills for respecting the other person and understanding the other person's opinion and perspective. Additionally, to understand the patient's perspective, medical interpreters reported that it was important to understand the cultural background of the patient and to maintain good relationships with all of the people around the patient. Conclusions: We explored the communication skills of medical interpreters and the characteristics of the perceptions and narratives of medical professionals and medical interpreters. Concepts regarding the communication skills of medical interpreters were divided into two axes (intervention and perspective) and presented as a 2 × 2 grid with four quadrants. The results of our study suggested that medical interpreters should actively intervene in interpretation situations involving foreign patients.

Navigating the challenging storms of cancer management in a national cancer centre: perspectives of female patients

BackgroundBreast, cervical, and ovarian cancers are among the top ten global cancers, affecting women, with age-standardized rates per 100,000 being 47.8 for breast, 13.3 for cervical, and 6.6 for ovarian cancer. The journey from cancer symptoms, through diagnosis and treatment, to survivorship, presents numerous challenges. These challenges encompass physical, psychological, and social aspects, significantly impacting patients' quality of life. It is crucial for research to explore not only the challenges faced by patients but also the strategies they employ to cope with these obstacles.MethodsThis study employed a cross-sectional qualitative approach. Twenty respondents, aged between 15 and 45 years and had been diagnosed with a reproductive cancer (breast, ovarian, or cervical), and were either undergoing treatment or had completed treatment within one year of the study period were purposively selected. Respondents were interviewed using a semi-structured interview guide. A thematic analysis was conducted on twenty in-depth interviews (IDIs) to understand the challenges and support systems for cancer patients.ResultsThe study identified two principal themes: the challenges faced by patients and the available support systems. The findings are based on patient narratives regarding the obstacles encountered during diagnosis, treatment, and follow-up, along with the mitigation strategies employed. Patients reported a range of challenges, categorized into financial and non-financial. Prominent among the non-financial challenges were psychological distress, body image issues, reduced sexual drive, and overall health deterioration. Support was primarily found through personal relationships and religious or spiritual beliefs.ConclusionThe research highlights the extensive psychological and social effects of cancer and it’s treatment. The study revealed the intertwined nature of financial difficulties and non-financial challenges, emphasizing the importance of social support, including religious, family, healthcare, and peer support. The findings suggest that a comprehensive, multidisciplinary management plan which encompasses both medical and supportive care is required to enhance patient well-being.