RESUMO
Glomerular diseases are classified using a descriptive taxonomy that is not reflective of the heterogeneous underlying molecular drivers. This limits not only diagnostic and therapeutic patient management, but also impacts clinical trials evaluating targeted interventions. The Nephrotic Syndrome Study Network (NEPTUNE) is poised to address these challenges. The study has enrolled >850 pediatric and adult patients with proteinuric glomerular diseases who have contributed to deep clinical, histologic, genetic, and molecular profiles linked to long-term outcomes. The NEPTUNE Knowledge Network, comprising combined, multiscalar data sets, captures each participant's molecular disease processes at the time of kidney biopsy. In this editorial, we describe the design and implementation of NEPTUNE Match, which bridges a basic science discovery pipeline with targeted clinical trials. Noninvasive biomarkers have been developed for real-time pathway analyses. A Molecular Nephrology Board reviews the pathway maps together with clinical, laboratory, and histopathologic data assembled for each patient to compile a Match report that estimates the fit between the specific molecular disease pathway(s) identified in an individual patient and proposed clinical trials. The NEPTUNE Match report is communicated using established protocols to the patient and the attending nephrologist for use in their selection of available clinical trials. NEPTUNE Match represents the first application of precision medicine in nephrology with the aim of developing targeted therapies and providing the right medication for each patient with primary glomerular disease.
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Nefropatias , Síndrome Nefrótica , Adulto , Criança , Humanos , Biomarcadores , Ensaios Clínicos como Assunto , Glomérulos Renais/patologia , Síndrome Nefrótica/diagnóstico , Síndrome Nefrótica/genética , Síndrome Nefrótica/terapiaRESUMO
BACKGROUND: Reducing overweight and obesity has been a longstanding focus of public health messaging and physician-patient interactions. Clinical guidelines by major public health organizations describe both overweight and obesity as risk factors for mortality and other health conditions. Accordingly, a majority of primary care physicians believe that overweight BMI (even without obesity) strongly increases mortality risk. MAIN POINTS: The current evidence base suggests that although both obese BMI and underweight BMI are consistently associated with increased all-cause mortality, overweight BMI (without obesity) is not meaningfully associated with increased mortality. In fact, a number of studies suggest modest protective, rather than detrimental, associations of overweight BMI with all-cause mortality. Given this current evidence base, clinical guidelines and physician perceptions substantially overstate all-cause mortality risks associated with the range of BMIs classified as "overweight" but not "obese." Discrepancies between evidence and communication regarding mortality raise the question of whether similar discrepancies exist for other health outcomes. CONCLUSIONS: Health communication that inaccurately conveys current evidence may do more harm than good; this applies to communication from health authorities to health practitioners as well as to communication from health practitioners to individual patients. We give three recommendations to better align health communication with the current evidence. First, recommendations to the public and health practitioners should distinguish overweight from obese BMI and at this time should not describe overweight BMI as a risk factor for all-cause mortality. Second, primary care physicians' widespread misconceptions about overweight BMI should be rectified. Third, the evidence basis for other potential risks or benefits of overweight BMI should be rigorously examined and incorporated appropriately into health communication.
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Índice de Massa Corporal , Sobrepeso , Humanos , Comunicação , Medicina Baseada em Evidências , Obesidade/mortalidade , Obesidade/complicações , Sobrepeso/mortalidade , Fatores de RiscoRESUMO
BACKGROUND: Medications to treat opioid use disorder (MOUD) such as buprenorphine/naloxone can effectively treat OUD and reduce opioid-related mortality, but they remain underutilized, especially in non-substance use disorder settings such as primary care (PC). OBJECTIVE: To uncover the factors that can facilitate successful prescribing of MOUD and uptake/acceptance of MOUD by patients in PC settings in the Veterans Health Administration. DESIGN: Semi-structured qualitative telephone interviews with 77 providers (e.g., primary care providers, hospitalists, nurses, addiction psychiatrists) and 22 Veteran patients with experience taking MOUD. Interviews were recorded, transcribed, and analyzed thematically using a combination a priori/inductive approach. KEY RESULTS: Providers and patients shared their general perceptions and experiences with MOUD, including high satisfaction with buprenorphine/naloxone with few side effects and caveats, although some patients reported drawbacks to methadone. Both providers and patients supported the idea of prescribing MOUD in PC settings to prioritize patient comfort and convenience. Providers described individual-level barriers (e.g., time, stigma, perceptions of difficulty level), structural-level barriers (e.g., pharmacy not having medications ready, space for inductions), and organizational-level barriers (e.g., inadequate staff support, lack of nursing protocols) to PC providers prescribing MOUD. Facilitators centered on education and knowledge enhancement, workflow and practice support, patient engagement and patient-provider communication, and leadership and organizational support. The most common barrier faced by patients to starting MOUD was apprehensions about pain, while facilitators focused on personal motivation, encouragement from others, education about MOUD, and optimally timed provider communication strategies. CONCLUSIONS: These findings can help improve provider-, clinic-, and system-level supports for MOUD prescribing across multiple settings, as well as foster communication strategies that can increase patient acceptance of MOUD. They also point to how interprofessional collaboration across service lines and leadership support can facilitate MOUD prescribing among non-addiction providers.
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Transtornos Relacionados ao Uso de Opioides , Atenção Primária à Saúde , United States Department of Veterans Affairs , Veteranos , Humanos , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Masculino , Feminino , Pessoa de Meia-Idade , Estados Unidos , Veteranos/psicologia , Adulto , Tratamento de Substituição de Opiáceos/métodos , Atitude do Pessoal de Saúde , Analgésicos Opioides/uso terapêutico , Antagonistas de Entorpecentes/uso terapêutico , Buprenorfina/uso terapêutico , Idoso , Prescrições de MedicamentosRESUMO
Studies report interaction difficulties between patients with polycystic ovary syndrome (PCOS) and healthcare professionals (HCP). This systematic review and qualitative evidence synthesis aimed to collate and synthesize the existing peer-reviewed literature investigating challenges for people with PCOS when interacting with HCP. Medline, PsycInfo, EMBASE, All EBM and CINAHL were searched from 1990 to September 2022. Study risk of bias (RoB) was performed and all textual data relevant to challenging interactions between patients with PCOS and HCP were extracted and analysed using thematic synthesis. Of the 6353 studies identified, 28 were included. Two were appraised as high, four as moderate and 22 as low RoB. Four analytic themes were derived illustrating that interactions were challenging when: (i) medical information (PCOS, its management) was not shared in the best way; (ii) information provision and deliberation opportunities were insufficient to achieve outcomes that mattered to patients; (iii) interactions prompted but did not support patient activation; and (iv) health system-level barriers (e.g. policies and guidelines) were present or made worse by HCP behaviour. Future research should examine methods for the implementation and evaluation of established frameworks for sharing medical information and supporting patient agency in the context of PCOS care.
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Síndrome do Ovário Policístico , Síndrome do Ovário Policístico/complicações , Síndrome do Ovário Policístico/terapia , Humanos , Feminino , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Relações Profissional-PacienteRESUMO
The COVID-19 pandemic led to the widespread and continuing use of telemedicine in primary care. Despite telemedicine's benefits, it threatens to reduce the role of family physician to that of gatekeeper and case manager, nullifying decades of experience and medical intuition that is more difficult to develop and apply virtually. Additionally, many values of family medicine have eroded during this global process. The narrative presents 3 vignettes that illustrate different ways in which we contend with this complex issue. The challenges presented by telemedicine require us to re-examine our professional and personal values such as maintaining the centrality of the therapeutic relationship with patients. The greatest concern, however, relates to the future of the profession and the ability of new family doctors to overcome the challenges of telemedicine in an increasingly digital world.
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Gerentes de Casos , Telemedicina , Humanos , Médicos de Família , Pandemias/prevenção & controle , Medicina de Família e ComunidadeRESUMO
BACKGROUND AND PURPOSE: The use of traditional and complementary medicine (T&CM) is common in children with cancer globally. We aimed to assess the prevalence, types, reasons, perceived effectiveness, and disclosure rate of T&CM use among children with cancer in Southern Egypt. We also investigated whether T&CM use contributed to delays in initial presentation and treatment. MATERIALS AND METHODS: A cross-sectional design was utilized. Data were collected via an interviewer-administered questionnaire. Eligible children and their caregivers at the South Egypt Cancer Institute were invited to participate. RESULTS: Eighty-six children completed the study (response rate = 86%). T&CM use was reported by 52 (60.5%) patients, with six (11.5%) experienced delayed presentation. The reasons for T&CM use were complementary for 37 (71%) and alternative for 15 (29%) of the participants. The types of T&CM used included herbal (63%), nutritional (33%), witchcraft (29%), and religious (19%) therapies. Approximately 48% of users employed multiple T&CM types. Family members recommended T&CM for 60% of the users. Most patients (65%) perceived T&CM as effective, with 71% initiating its use during the early phases of treatment. Almost all participants (98%) reported that healthcare providers did not inquire about T&CM use. T&CM usage was more prevalent among wealthier families (p = .023). There was no significant relationship between T&CM use and patient gender, diagnosis, residence, or paternal educational level. CONCLUSIONS: The significant utilization of T&CM among children with cancer highlights the need for healthcare providers to engage in open and early discussions with families regarding T&CM use.
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Terapias Complementares , Neoplasias , Humanos , Masculino , Feminino , Terapias Complementares/estatística & dados numéricos , Estudos Transversais , Neoplasias/terapia , Neoplasias/epidemiologia , Criança , Egito/epidemiologia , Pré-Escolar , Adolescente , Inquéritos e Questionários , Lactente , Medicina Tradicional , Família , AdultoRESUMO
BACKGROUND: Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. AIM: To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours. METHODS: Interviews were conducted with 18 families of children and adolescents aged 8-17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method. RESULTS: Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal. CONCLUSION: There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the 'KLIK' patient- and parent-reported outcome (PROM) portal.
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Neoplasias Encefálicas , Barreiras de Comunicação , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Criança , Adolescente , Masculino , Feminino , Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/terapia , Encaminhamento e Consulta , Pais/psicologia , Necessidades e Demandas de Serviços de Saúde , Adulto , Seguimentos , Família/psicologia , ComunicaçãoRESUMO
In this narrative, a general practitioner and psychotherapist trained in anthroposophic medicine presents the narrative and treatment of a 60-year-old woman who experienced the horrors of the "Dark Sabbath" attack in southern Israel on October 7, 2023. The patient's story is narrated by the physician, who shares his multi-disciplinary and multi-modal anthroposophic medicine approach to address the patient's acute stress disorder-related symptoms and concerns.
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Medicina Antroposófica , Humanos , Feminino , Pessoa de Meia-IdadeRESUMO
PURPOSE OF REVIEW: Communicating effectively with patients having a traditional, alternative or complementary medicine-related health-belief model is challenging in today's cross-cultural society. This narrative review explores the integrative medicine setting of care, focusing on insights from the integrative oncology daily practice, while addressing the relevance to the mental health setting. The way in which healthcare providers can enhance cultural-sensitive communication with patients and informal caregivers; recognize and respect health-beliefs to bridge cultural gaps; and generate an open, non-judgmental and mindful dialogue are discussed. RECENT FINDINGS: Identifying cross-cultural barriers to healthcare provider-patient communication is important in order to address the potential for conflict between conventional and "alternative" health beliefs; difficulties in creating a shared-decision making process; disagreement on therapeutic goals and treatment plan; and finally, the potential for non-compliance or non-adherence to the conventional oncology treatment. Acquiring intercultural competencies is needed at all stages of medical education, and should be implemented in medical and nursing curricula, as well as during specialization and sub-specialization. As with patient-centered paradigms of care, integrative medicine entails a dual patient-centered and sensitive-cultural approach, based on a comprehensive bio-psycho-social-spiritual model of care.
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Medicina Integrativa , Humanos , Medicina Integrativa/métodos , Comunicação , Aconselhamento/métodos , Assistência à Saúde Culturalmente Competente , Relações Médico-Paciente , Competência Cultural , Terapias Complementares/métodosRESUMO
PURPOSE: Many people with cancer (patients) want to know their prognosis (a quantitative estimate of their life expectancy) but this is often not discussed or poorly communicated. The optimal timing of prognostic discussions with people with advanced cancer is highly personalised and complex. We aimed to find, organise, and summarise research regarding the timing of discussions of prognosis with people with advanced cancer. METHODS: We conducted a systematic review of publications from databases, clinical practice guidelines, and grey literature from inception to 2023. We also searched the reference lists of systematic reviews, editorials, and clinical trial registries. Eligibility criteria included publications regarding adults with advanced cancer that reported a timepoint when a discussion of prognosis occurred or should occur. RESULTS: We included 63 of 798 identified references; most of which were cross-sectional cohort studies with a range of 4-9105 participants. Doctors and patients agreed on several timepoints including at diagnosis of advanced cancer, when the patient asked, upon disease progression, when there were no further anti-cancer treatments, and when recommending palliative care. Most of these timepoints aligned with published guidelines and expert recommendations. Other recommended timepoints depended on the doctor's clinical judgement, such as when the patient 'needed to know' or when the patient 'seemed ready'. CONCLUSIONS: Prognostic discussions with people with advanced cancer need to be individualised, and there are several key timepoints when doctors should attempt to initiate these conversations. These recommended timepoints can inform clinical trial design and communication training for doctors to help improve prognostic understanding.
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Neoplasias , Adulto , Humanos , Estudos Transversais , Progressão da Doença , Neoplasias/terapia , PrognósticoRESUMO
PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.
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Motivação , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Cuidados Paliativos/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , França , Neoplasias/psicologia , Neoplasias/terapia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso de 80 Anos ou mais , Adulto , Recusa do Paciente ao Tratamento/psicologia , Ensaios Clínicos como Assunto/psicologia , Qualidade de Vida , Método Duplo-Cego , Pesquisa QualitativaRESUMO
OBJECTIVES: To describe patients' and surrogate information seekers' experiences talking to clinicians about online cancer information. To assess the impact of clinicians telling patients or surrogate seekers not to search for information online. DESIGN: Cross-sectional survey. SAMPLE: A total of 282 participants, including 185 individuals with cancer and 97 surrogate seekers. METHODS: Individuals were recruited through a broad consent registry and completed a 20-min survey. FINDINGS: Cancer patients and surrogate seekers did not differ significantly in their experiences talking with clinicians about online cancer information. Nearly all patients and surrogate seekers who were told by a clinician not to go online for cancer information did so anyway. IMPLICATIONS: Interventions for improving cancer information seeking and communication with clinicians should target both patients and surrogate seekers. Clinicians should be educated about effective ways to communicate with patients and surrogate seekers about online cancer information.
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Comunicação , Internet , Neoplasias , Humanos , Neoplasias/psicologia , Estudos Transversais , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , Comportamento de Busca de Informação , Relações Médico-Paciente , Adulto JovemRESUMO
BACKGROUND: Enhanced communication in end-of-life care (EOL) improves preparation and treatment decisions for patients with advanced cancer, affecting their quality of life at the end of life. Question prompt list (QPL) has been shown to enhance physician-patient communication in patients with cancer, but there is a lack of systematic review and meta-analysis for those with advanced cancer. Enhanced communication in end-of-life care improves preparation and treatment decisions for patients with advanced cancer, affecting their quality of life at the end of life. OBJECTIVE: To review the effectiveness of QPL intervention on physician-patient communication and health outcomes during consultation in patients with advanced cancer. METHODS: CINAHL, Embase, Scopus, and PsycINFO databases were undertaken using inclusion criteria for relevant articles up to August 2021. Pooled standardized mean difference (SMD) and 95% confidence intervals (CIs) were calculated using random-effects models. We used the Cochrane risk-of-bias assessment tool and modified Jadad scale to assess the quality of the studies. RESULTS: Seven RCTs with 1059 participants were included, of which six studies were eligible for the meta-analysis. The pooled meta-analysis results indicated that QPL in patients with advanced cancer had a significant positive effect on the total number of questions asked (SMD, 0.73; 95% CI, 0.28 to 1.18; I2 = 83%) and on the patients' expectations for the future (SMD, 0.67; 95% CI, 0.08 to 1.25; I2 = 88%). There were no significant improvements in health-related outcomes such as end of life, anxiety, and quality of life. CONCLUSIONS: Using QPL in advanced cancer consultations boosts patient questions which helps communication but not health-related indicators. Optimal results depend on full reading, but timing varies. Future research should examine the relationship between communication and health outcomes, including patient/physician behavior and social context.
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Comunicação , Neoplasias , Relações Médico-Paciente , Qualidade de Vida , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Assistência Terminal/métodos , Assistência Terminal/psicologia , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
AIM: Although dentine hypersensitivity is widespread, can cause substantial pain and impact quality of life, it is not routinely discussed during dental consultations. This qualitative study aimed to develop an understanding of the barriers and facilitators to these discussions. MATERIALS AND METHODS: Using the Theoretical Domains Framework to shape the topic guide, N = 7 online focus groups were organized with a total N = 40 participants comprising experienced dentists, dental foundation trainees and dental care professionals. Inductive and deductive thematic analyses of the anonymized, transcribed focus group conversations were undertaken. RESULTS: An attitude-behaviour gap was observed in dental teams' accounts. Although they saw it as part of their professional role to routinely discuss sensitivity, and believed that such conversations were 'an easy win', in practice they experienced several behavioural barriers that hindered these conversations from taking place. These included competing priorities, a perceived lack of seriousness and assessment of dentine hypersensitivity and practical issues such as time. CONCLUSIONS: Systemic (e.g., lack of time and training, professional culture) and behavioural (e.g., dental teams' belief that conversations should take place only with patients likely to be adherent) barriers to dentine hypersensitivity conversations explain why these conversations do not routinely take place.
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Sensibilidade da Dentina , Qualidade de Vida , Humanos , Sensibilidade da Dentina/diagnóstico , Pesquisa Qualitativa , Encaminhamento e ConsultaRESUMO
BACKGROUND: Informed consent is an essential process in clinical decision-making, through which healthcare providers educate patients about benefits, risks, and alternatives of a procedure. Statistical risk information is difficult to communicate and the effectiveness of aids aimed at supporting this type of communication is uncertain. This systematic review aims to study the impact of risk communication adjuncts on patients' understanding of statistical risk in surgery and interventional procedures. METHODS: A systematic search was performed across Medline, Embase, PsycINFO, Scopus, and Web of Science until July 2021 with a repeated search in September 2022. RCTs and observational studies examining risk communication tools (e.g., information leaflets and audio-video) in adult (age >16) patients undergoing a surgical or interventional procedure were included. Primary outcomes included the objective assessment of statistical risk recall. Secondary outcomes included patient attitudes with respect to statistical information. Due to the study heterogeneity, a narrative synthesis was performed. RESULTS: A total of 4348 articles were identified, and following abstract and full-text screening 14 articles, including 9 RCTs, were included. The total number of adult patients was 1513. The most common risk communication tool used was written information (n = 7). Most RCTs (7/9, 77.8%) showed statistically significant improvements in patient understanding of statistical risk in the intervention group. Quality assessment found some concerns with all RCTs. CONCLUSION: Risk communication tools appear to improve recall of statistical risk. Additional prospective trials comparing various aids simultaneously are warranted to determine the most effective method of improving understanding.
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Consentimento Livre e Esclarecido , Humanos , Educação de Pacientes como Assunto , Procedimentos Cirúrgicos Operatórios , Medição de Risco , Compreensão , ComunicaçãoRESUMO
Trust forms the bedrock of the doctor-patient relationship. While establishing trust is a foundational skill for healthcare providers who care for children, there is no systematic approach to teaching this skill set, nor is there formal training during medical school or residency. Traditionally, these skills have been taught by example, in an unstructured and ad hoc manner, with trainees picking it up along the way by observing and modeling their instructors. Here, we define and examine the elements of establishing trust and describe a methodology for establishing trust and managing a child's emotional state during medical encounters.
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Relações Médico-Paciente , Confiança , Humanos , Criança , Pediatria/métodosRESUMO
INTRODUCTION: People being investigated for cancer face a wealth of complex information. Non-specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. METHODS: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. RESULTS: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. CONCLUSION: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help-seeking post-discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. PATIENT OR PUBLIC CONTRIBUTION: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.-A. M.) was involved in data analysis and writing the manuscript.
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Antropologia Cultural , Letramento em Saúde , Neoplasias , Humanos , Neoplasias/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Inglaterra , Idoso , Adulto , Entrevistas como Assunto , Comunicação , Pesquisa QualitativaRESUMO
BACKGROUND: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work-up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work-up at a specialized memory clinic. METHODS: This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work-up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50-72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test-result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio-recorded data were analyzed using thematic content analysis (using MaxQDA software). RESULTS: Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work-up impacted individuals psychosocially and (3) the diagnostic work-up provided an opportunity to motivate individuals to adopt a healthier lifestyle. CONCLUSION: Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work-up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health. PATIENT OR PUBLIC CONTRIBUTION: We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source.
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Doença de Alzheimer , Disfunção Cognitiva , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Motivação , Doença de Alzheimer/diagnóstico , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Instituições de Assistência Ambulatorial , Pesquisa QualitativaRESUMO
The present study aims to explore the forms paternalistic communication can take in doctor-patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor-patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism-specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles-termed paternalist modes-which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors.
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Comunicação , Paternalismo , Autonomia Pessoal , Relações Médico-Paciente , Humanos , Paternalismo/ética , Relações Médico-Paciente/ética , Noruega , Preferência do Paciente , Empatia , Ética Médica , Masculino , Médicos/ética , Médicos/psicologiaRESUMO
Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable infant. This article analyses 25 antenatal consultations between neonatologists and parents in one Midwestern hospital in the United States of America. It explores how neonatologists position comfort care as one of two predominant care trajectories for extremely premature infants born into the grey zone of viability. We found comfort care featured minimally in and was often marginalised by neonatologists' language. The two dominant discourses contributing to this were acute medicine's life-saving capacity and a limited temporal window marked by gestational age where comfort measures were deemed appropriate. Antenatal consultations framed by shared decision-making could be approached as a form of care characterised by a relational openness and responsiveness to parents' views on care. This asks neonatologists to enter antenatal consultations for periviability without knowing ahead of time which care trajectory will necessarily call one's attention or the particular response one should take, thus highlighting the skills of reflexivity in addition to an attentiveness and openness towards those receiving care.