"Unable to Feed My Hungry Child": Experiences of Mothers Caring for Children With Prader-Willi Syndrome.

Mothers' experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to 12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' everyday experiences amplified complex care needs for families and gaps in health and social care systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b) reconceptualizing care work, and (c) alternative care models.

Comparative analysis of microstructures of narrative abilities in language-age-matched Tamil-speaking children with cochlear implants and typical hearing.

In a unique exploration of narrative development among Tamil-speaking children, this study delves into the intricacies of linguistic expression, explicitly comparing the microstructure of narratives in two distinct groups: those with hearing differences (HD) and those with normal hearing. A total of 30 children were included in the study, with 15 children in each group, matched for language age between 3-5 years on standard language tests. The children were asked to retell a story they had listened to, and the obtained samples were transcribed verbatim and analyzed for various microstructural elements, including the mean length of utterances, total number of words, number of utterances, and number of different word types. The results revealed that children with hearing loss used fewer words and simpler sentences during retelling despite having the same language age as their peers. This highlights the importance of incorporating narrative assessment in standard language evaluations. Furthermore, the findings emphasise integrating narrative intervention into language intervention programs to enhance language productivity. Overall, this study provides valuable insights into the narrative abilities of Tamil-speaking children with cochlear implants and underscores the significance of addressing narrative skills in language intervention approaches.

Interventions for Integrating Behavioral Health into HIV Settings for US Adults: A Narrative Review of Systematic Reviews and Meta-analyses, 2010-2020.

Mental health and substance use disorders can negatively affect physical health, illness management, care access, and quality of life. These behavioral health conditions are prevalent and undertreated among people with HIV and may worsen outcomes along the entire HIV Care Continuum. This narrative review of tested interventions for integrating care for HIV and behavioral health disorders summarizes and contextualizes findings from systematic reviews and meta-analyses conducted in the past decade. We sought to identify gaps in research that hinder implementing evidence-based integrated care approaches. Using terms from the Substance Abuse and Mental Health Services Administration-Health Resources & Services Administration standard framework for integrated health care, we searched PubMed and PsycInfo to identify peer-reviewed systematic reviews or meta-analyses of intervention studies to integrate behavioral health and HIV published between 2010 and 2020. Among 23 studies identified, only reviews and meta-analyses that described interventions from the United States designed to integrate BH services into HIV settings for adults were retained, leaving six studies for narrative review by the study team. Demonstrated benefits from the relatively small literature on integrated care interventions include improved patient- and service-level outcomes, particularly for in-person case management and outreach interventions. Needed are systems-level integration interventions with assessments of long-term outcomes on behavioral health symptoms, HIV viral suppression, HIV transmission rates, and mortality. HIV, primary care, and other providers must include behavioral health as a part of overall healthcare and must play a central role in behavioral health care delivery. Research is needed to guide their way.

The effect of animated Sci-Fi characters' racial presentation on narrative engagement, wishful identification, and physical activity intention among children.

Characters play an integral role in animated narratives, but their visual racial presentation has received limited attention. A diverse group of U.S. children watched a 15-min physical activity-promoting animated Sci-Fi narrative. They were randomly assigned to one of three conditions, which varied the lead characters' racial presentation: realistic racially unambiguous (Original: White children, Black mother), realistic racially ambiguous (Ambiguous: All with brown skin without specified race/ethnicity), and fantastical racially ambiguous (Fantastical: All with brown skin with fantastical hair-and-eye color schemes). We assessed narrative engagement, wishful identification, and physical activity intention. Controlling for social desirability and multigroup ethnic identity, children who watched Fantastical characters showed significantly higher narrative engagement than those who watched Original characters, but they did not statistically differ from those who watched Ambiguous characters. Structural equation modeling indicated that narrative engagement and wishful identification fully mediated the racial representation effect (Fantastical vs. Original) on physical activity intention.

Augmented reality in brachytherapy: A narrative review.

Brachytherapy (BRT) plays a pivotal role in the treatment of tumors, offering precise radiation therapy directly to the affected area. However, this technique demands extensive training and skills development, posing challenges for widespread adoption and ensuring patient safety. This narrative review explored the utilization of augmented reality (AR) in BRT, seeking to summarize existing evidence, discuss key findings, limitations, and quality of research as well as outline future research directions. The review revealed promising findings regarding the integration of AR in BRT. Studies have suggested the feasibility and potential benefits of AR in education, training, intra-operative guidance, and treatment planning. However, the evidence remains limited and heterogeneous, with most studies in preliminary phases. Standardization, prospective clinical trials, patient-centered outcomes assessment, and cost-effectiveness analysis emerge as critical areas for future research. Augmented reality holds transformative potential for BRT by enhancing precision, safety, and training efficiency. To fully implement these benefits, the field requires standardized protocols, rigorous clinical trials, and in-depth patient-centered investigations. Policy-makers and healthcare providers should closely monitor developments in AR and consider its implementation in clinical practice, contingent and robust evidence, and cost-effectiveness analysis. The pro-active pursuit of evidence-based practices will contribute to optimizing patient care in BRT.

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease.

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.

[Ritual sexual abuse : Orientation to patient well-being in a polarized debate]. / Ritueller sexueller Missbrauch : Orientierung am Patientenwohl in einer polarisierten Debatte.

BACKGROUND: The background to this article is a polarized media debate about ritual violence against children in German speaking countries. Two opposing positions have formed, which are unable to engage in a reasonable exchange with each other. OBJECTIVE: The article therefore aims to contribute to bridging the differences and argues, above all in the interests of patient well-being, for positioning oneself beyond polarization and to reflect on an evidence-base in treatment as well as in scientific discourse. MATERIAL AND METHODS: The article is based on a critical examination of exemplary scientific literature, public investigation reports and diverse media coverage. RESULTS: In certain psychotraumatology circles and in the media (especially on social media, such as telegram), there is a conspiracy narrative about a large network of perpetrators who inflict the most serious sexual violence on children in a ritual context. An uncritical belief in this has already led to mistreatment of patients and also to a fundamental mistrust of their statements. This threatens these already vulnerable patients with further harm, which contradicts the basic principles of medical ethics.

Does Pollyanna hypothesis hold true in death narratives? A sentiment analysis approach.

Pollyanna hypothesis claims that human beings have a universal tendency to use positive words more frequently and broadly than negative words. The present study aims to test Pollyanna hypothesis in medical death narratives at both lexical and text levels by using sentiment analysis and emotion detection methods, and to qualitatively analyze the contextual use of emotion words to deepen the understanding of doctors' emotions. Sentiment analysis showed a strong token-based linguistic positivity and a weak type-based negativity bias at the lexical level, and a general positivity bias at the text level, despite the gender of the doctors. Emotion detection discovered three prominent emotions of "joy", "sadness", and "anger", and a greater diversity of negative emotions in contrast to positive emotions in medical death narratives. Contextual analysis revealed that emotion words associated with joy were primarily observed in contexts related to doctors' actions and behaviors aiming to benefit others and promote social wellbeing. Emotion words associated with sadness and anger were chiefly employed to describe situations involving patients' death and doctors' attitudes towards death. The results confirm Pollyanna hypothesis at both token-based lexical level and text level and falsify the hypothesis at type-based lexical level. Possible explanations are explored by contextual analysis, and theoretical analysis from the perspectives of cognitive linguistics and social psychology. The findings are expected to enrich the understanding of Pollyanna hypothesis as well as the junior doctors' emotional responses to clinical deaths.

Making sense of COVID-19: manifestations of health capital during the pandemic.

BACKGROUND: Grounded in Bourdieu's theory of human practice, this study aims to examine how individuals as social agents made sense of and acted upon their COVID-19 experiences. A recent conceptualization of health capital is utilized to explain the practices of patients in the pandemic, in relation to their biographical background. METHODS: This is a qualitative research in which the data were collected by biographical narrative interviews through a theoretical sampling approach. Eighteen interviews with COVID-19 patients were conducted and 8 of them were analyzed by the Documentary Method. RESULTS: The informants made sense of their illness experiences through their health capital, which is manifested in their self-perception of health, their attitudes towards the healthcare system, their conception of terms such as luck, their work status, and the gendered division of labour at home in the COVID-19 pandemic. All the manifestations are mediated by the social, cultural, and economic capital of the informants, and their habitual practices are based on their symbolic capital. CONCLUSION: The study depicts how social agents' health capital manifested in the pandemic, relying on their symbolic capital, and shaping their practices. Further research across diverse contexts is needed to fully understand extra dimensions of health capital as a descriptor of the social determinants of health.

Allergic Rhinitis in Children: An Underestimated Disease.

Allergic rhinitis affects approximately 40% of children. This study aimed at determining the prevalence, sociodemographic features, comorbid illnesses, complications and quality of life in children referred to the outpatient clinic of "Allergic Rhinitis" in Penteli Children Hospital, Athens, Greece. We analyzed 590 pediatric patients referred to the outpatient clinic of "Allergic Rhinitis" in Penteli Children Hospital, Athens, Greece from 26/01/2012 to 20/11/2022. Allergic rhinitis was recorded as the one and only allergic disease in 59% of the children diagnosed with allergic rhinitis, concomitant asthma in 16% of them, atopic dermatitis in 8% and allergic conjunctivitis in 5%. 54% of asthmatic children was diagnosed allergic rhinitis, while 16% of allergic rhinitis children was diagnosed asthma. Skin tests were important diagnostic tools, not being necessary the measurement of total IgE in plasma. Eosinophils from nasal secretions were increased in 19% of the children with non-diagnostic cases and the diagnosis was local allergic rhinitis (LAR). Clinical presentations of allergic rhinitis were mainly nasal blockage, runny nose, recurrent sneezing and nasal itching. The most common complication was acute or chronic sinusitis 35%. Major associated comorbid illnesses among were tonsils hypertrophy, adenoid hypertrophy and inferior turbinate hypertrophy. Allergic rhinitis was reported in 78% of studied children and was frequently characterized by significant morbidity. Allergic rhinitis affected all paediatric age group and was peaked at age group 11-14 years and 5-7 years. There were associated epidemiological features, clinical manifestations, comorbid illnesses, complications and affectation of the quality of life in children.

Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder.

PROBLEM: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The purpose of this narrative review was to explore the grief process of parents of children with ASD. ELIGIBILITY CRITERIA: An analysis of the literature was conducted using the databases Psychinfo, Scopus, Web of Science, and PubMed. As part of our research, we also searched the grey literature (Google Scholar) and the thesis database (ProQuest) manually. Among the study criteria were (1) targeting direct informants as parents of children with ASD, (2) original and empirical research published in different English-language sources, (3) outcomes pertaining to grief experiences among parents, and/or processes involved in raising children with ASD, and (4) studies with qualitative data collection methods. SAMPLE: Seven articles met the inclusion criteria and were included in this narrative analysis. RESULTS: Our study's deductive content analysis revealed three primary themes: (i) manifestations of ambiguous loss, (ii) dealing with disenfranchised grief, and (iii) oscillation. CONCLUSIONS: The results showed that ASD in children can cause parents to feel ambiguity and uncertainty, experience grief, and may result in the modification of expectations, emergent affective responses, and self-blame attributions. When confronted with difficulties arising from their child's condition, parents of children with ASD may undergo significant life changes and oscillate between various coping strategies. IMPLICATIONS: The findings are expected to provide healthcare professionals, including nurses and front-line clinicians, with valuable information about the burden of grief experienced by parents of children with ASD so they can provide and validate the necessary support for them. Moreover, rigorous qualitative and quantitative studies are also required to support the claims made.

Narrative skills and language comprehension in preschool children with cochlear implants: A comparison with children with Developmental Language Disorder or typical development.

INTRODUCTION: The narrative skills of children with cochlear implants (CIs) are fragile, but the factors at play and whether these difficulties could be similar to those detected in language impairment are not clear. The present study aims to assess, at the microstructural level, narrative skills, comparing children with CIs with children with Developmental Language Disorder (DLD) or Typical Development (TD). Furthermore, the relationship between verbal (lexical and morphosyntactic) comprehension and narrative skills across groups is investigated. METHODS: The narratives of 19 children with CIs (Mage = 62.42 months, SD = 6.83), 13 children with DLD (Mage = 65.38 months, SD = 4.27), and 18 preschool children with TD (Mage = 63.67 months, SD = 4.31) were assessed in a standardized task. Articles, prepositions, pronouns, gender and number agreement, accuracy in the use of verbs, and number of arguments in each sentence were analysed. Lexical and morphosyntactic comprehension were also assessed. Performance was compared across groups using ANOVAs or Kruskal-Wallis tests. The role of lexical and morphosyntactic comprehension in predicting each morphological and syntactic element in the narrative task was examined using linear regressions. RESULTS: Data analysis showed that both children with CIs and DLD had fragilities in narration, both in the morphological and syntactic components. Although some differences between children with CIs and those with DLD emerged in descriptive analyses, these were not statistically significant. Regressions showed that morphosyntactic comprehension predicted the number of pronouns produced only in the TD group. CONCLUSIONS: The scarce differences between CI and DLD groups and the absence of an effect of morphosyntactic comprehension on pronoun production may be due to their low production of these elements in the narrative task and/or to a difficulty in managing pronouns in an expressive task regardless of their ability to comprehend them. Potential implications of these results are discussed.

Making meaning of one's own life story in words and images: A narrative case report of personal recovery from personality disorder through the interventions "An Empowering Story" and art therapy.

Understanding and processing life experiences are essential in the treatment of personality disorders to promote personal recovery and psychological wellbeing. In this qualitative case report, drafted in co-creation between the client, clinical psychologist, and art therapist, individual treatment consisted of two psychotherapeutic interventions, "An Empowering Story" and life-story-focused art therapy, in 12 parallel sessions for 24 weeks. Hilda, 68 years of age, had been diagnosed with an unspecified personality disorder and various traits of borderline personality disorder. She experienced emotional exhaustion following long-term mental health problems rooted in a traumatic early childhood. This affected her ability to manage her emotions and social relations, resulting in the sense that her life had no meaning. Hilda was invited to reconstruct her life experiences, divided into the past, turning point, and present/future, in a written and a painted life story. This allowed for the integration of traumatic as well as positive memories, enhanced self-compassion, and meaning making. She developed self-reflection and integration of internal conflicts leading to a better emotional balance and self-understanding. Art therapy emphasizes bottom-up regulatory processes, while narrative psychology supports top-down regulatory processes. The combined approach effectively integrated bottom-up, experiential, sensory experiences with top-down, cognitive emotion-regulation processes. The results suggest that psychotherapeutic interventions involving a multi-pronged, complementary, and thus more holistic approach can support personal recovery in personality disorders.

Recalling experiences of scarcity reduces children's generosity relative to recalling abundance.

Does a sense of having less or more than what one needs affect one's generosity? The question of how resource access influences prosocial behavior has received much attention in studies with adults but has produced conflicting findings. To better understand this relationship, we tested whether resource access affects generosity in the developing mind. In our preregistered investigation, we used a narrative recall method to explore how temporary, experimentally evoked states of resource abundance or scarcity affect children's sharing. In this study, 6- to 8-year-old American children (N = 148) recalled an experience of scarcity or abundance and then chose how many prizes to share with another child. We found that children in the scarce condition rated themselves as sadder, viewed their resource access as more limited, and shared fewer tokens than children in the abundant condition. Our results indicate that recalling past experiences of resource access creates distinct behavioral consequences for children and suggest that a sense of "having less" may encourage a strategy of resource conservation relative to a sense of "having more," even at a young age.

UK survey on experiences of men with non-cancer-related lymphoedema: part one.

This initial article delves into the methodology, methods and theories, while the subsequent article will centre on the discoveries, discussion and conclusion. The study aimed to address the research question: how do men perceive their engagement in the self-management of non-cancer-related lymphoedema? An interpretivist qualitative methodology was employed, utilising an online survey based on the validated lymphoedema quality of life tool (LYMQoL). The data underwent inductive narrative inquiry. The study incorporated theories such as hegemonic masculinity and the health, illness, men and masculinities (HIMM) framework. The findings will be detailed in the second article in this series. This article has delineated the objective, methodologyand methods, employing a qualitative interpretivist approach through narrative inquiry. The study incorporated masculinity theories, including hegemonic masculinity and HIMM. The second article will present the findings and their significance within the broader literature.

Determinants of hospital readmissions in older people with dementia: a narrative review.

INTRODUCTION: Over 50% of hospitalised older people with dementia have multimorbidity, and are at an increased risk of hospital readmissions within 30 days of their discharge. Between 20-40% of these readmissions may be preventable. Current research focuses on the physical causes of hospital readmissions. However, older people with dementia have additional psychosocial factors that are likely to increase their risk of readmissions. This narrative review aimed to identify psychosocial determinants of hospital readmissions, within the context of known physical factors. METHODS: Electronic databases MEDLINE, EMBASE, CINAHL and PsychInfo were searched from inception until July 2022 and followed up in February 2024. Quantitative and qualitative studies in English including adults aged 65 years and over with dementia, their care workers and informal carers were considered if they investigated hospital readmissions. An inductive approach was adopted to map the determinants of readmissions. Identified themes were described as narrative categories. RESULTS: Seventeen studies including 7,194,878 participants met our inclusion criteria from a total of 6369 articles. Sixteen quantitative studies included observational cohort and randomised controlled trial designs, and one study was qualitative. Ten studies were based in the USA, and one study each from Taiwan, Australia, Canada, Sweden, Japan, Denmark, and The Netherlands. Large hospital and insurance records provided data on over 2 million patients in one American study. Physical determinants included reduced mobility and accumulation of long-term conditions. Psychosocial determinants included inadequate hospital discharge planning, limited interdisciplinary collaboration, socioeconomic inequalities among ethnic minorities, and behavioural and psychological symptoms. Other important psychosocial factors such as loneliness, poverty and mental well-being, were not included in the studies. CONCLUSION: Poorly defined roles and responsibilities of health and social care professionals and poor communication during care transitions, increase the risk of readmission in older people with dementia. These identified psychosocial determinants are likely to significantly contribute to readmissions. However, future research should focus on the understanding of the interaction between a host of psychosocial and physical determinants, and multidisciplinary interventions across care settings to reduce hospital readmissions.

Blending Behavioural Theory and Narrative Analysis to Explore the Lived Experience of Obesity and Assess Potential Engagement in a UK Weight Management Service: Theory and Narrative Approaches in Weight Management.

BACKGROUND: Current treatments for people with obesity emphasise the need for person-centred approaches that consider complex biopsychosocial factors and value the lived experience of people when attempting to lose weight. METHODS: Narrative interviews (n = 20) were conducted with people living with obesity to explore the causes of their weight gain and their expectations and engagement with treatment at a Weight Management Clinic. A mixed inductive and deductive qualitative analysis identified utterances that represented psychological constructs used to understand self-appraisal and health behaviour. A narrative analysis was used to situate these findings in the context of a participant's life story. RESULTS: Locus of control was a dominant construct evidenced through a person's attributional style and self-efficacy. Transcripts represented a heightened sense of self-understanding and shifts in control, and styles of attribution and efficacy resulted in either stasis or self-actualisation. The Stages of Change model could be applied to narratives to ascertain a patient's motivation to access treatment. Importantly, narrative interviews also allowed for the consideration of how a person's systemic context influenced their weight. CONCLUSION: Narrative interaction supports both self- and shared understandings of the causes and consequences of obesity for individuals, in a non-blaming or shaming manner. It provides an opportunity to enhance engagement through tailored, person-centred treatments.

The relationship between psychopathy and autism: a systematic review and narrative synthesis.

Background and methods: The aim of this systematic review was to synthesise research examining the relationship between autism and psychopathy to: (a) better understand the relationship between these two constructs, and (b) describe the clinical manifestation of the two when they co-occur. A systematic search of the literature returned 36 studies. Results: Across all ages, autistic individuals and those with elevated autistic traits but no autistic diagnoses appeared to have increased callous and unemotional traits or psychopathy relative to the general population. Several studies evidenced that although both constructs are associated with empathetic dysfunction, the underlying mechanisms differ. In adults, psychopathy/psychopathic traits were associated with diminished affective empathy and intact cognitive empathy, whilst the opposite was seen autistic adults and those with elevated autistic traits. In children, those with autistic traits or a diagnosis of autism had diminished cognitive empathy, but not affective empathy, while the relationship between callous and unemotional traits/psychopathy and empathy amongst children was less clear. The co-occurrence of autism and psychopathy was seen to lead to additional empathic and cognitive impairment, but findings were mixed making it challenging to clearly describe the clinical manifestation. Conclusion: There remains a paucity of research investigating the interaction between autism and psychopathy and included studies were characterised by multiple measurement difficulties. Attention should be directed toward developing better methods for identifying psychopathic traits in autistic individuals to advance our understanding of the relationship between autism and psychopathy to allow for the development of appropriate care pathways for this population. Systematic review registration: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=413672, identifier CRD42023413672.

Temporomandibular disorders among Ehlers-Danlos syndromes: a narrative review.

This narrative review aims to demonstrate and summarize the complex relationship between Ehlers-Danlos syndromes (EDS) and temporomandibular disorders (TMD) by reviewing the results of observational studies and case reports. EDS are a set of hereditary connective tissue disorders, where generalized joint hypermobility (GJH), especially in the hypermobile subtype (hEDS), is a key symptom. Mutations have been identified in genes that impact the production or assembly of collagen for all subtypes except hEDS. While the correlation between GJH and TMD has been analysed in various studies, fewer studies have examined TMD in patients with EDS, with most showing an increased prevalence of TMD. In case-control studies, an elevated prevalence of myalgia, arthralgia and disc-related disorders was found in individuals with EDS. Various therapeutic interventions have been reported within the literature in the form of case reports and observational studies, but there are no long-term clinical trials with results on the efficacy of different therapeutic approaches to date. This review demonstrates the high prevalence of different TMDs in different subtypes of EDS, but also shows that little is known about the success of treatment thus far. Further clinical research is necessary to provide adequate guidance on targeted treatment.

Exploring kidney dialysis costs in the United States: a scoping review.

AIMS: The increasing prevalence of end-stage renal disease (ESRD) in the United States (US) represents a considerable economic burden due to the high cost of dialysis treatment. This review examines data from real-world studies to identify cost drivers and explore areas where dialysis costs could be reduced. METHODS: We identified and synthesized evidence published from 2016-2023 reporting direct dialysis costs in adult US patients from a comprehensive literature search of MEDLINE, Embase, and grey literature sources (e.g. US Renal Data System reports). RESULTS: Most identified data related to Medicare expenditures. Overall Medicare spending in 2020 was $29B for hemodialysis and $2.8B for peritoneal dialysis (PD). Dialysis costs accounted for almost 80% of total Medicare expenditures on ESRD beneficiaries. Private insurance payers consistently pay more for dialysis; for example, per person per month spending by private insurers on outpatient dialysis was estimated at $10,149 compared with Medicare spending of $3,364. Dialysis costs were higher in specific high-risk patient groups (e.g. type 2 diabetes, hepatitis C). Spending on hemodialysis was higher than on PD, but the gap in spending between PD and hemodialysis is closing. Vascular access costs accounted for a substantial proportion of dialysis costs. LIMITATIONS: Insufficient detail in the identified studies, especially related to outpatient costs, limits opportunities to identify key drivers. Differences between the studies in methods of measuring dialysis costs make generalization of these results difficult. CONCLUSIONS: These findings indicate that prevention of or delay in progression to ESRD could have considerable cost savings for Medicare and private payers, particularly in patients with high-risk conditions such as type 2 diabetes. More efficient use of resources is needed, including low-cost medication, to improve clinical outcomes and lower overall costs, especially in high-risk groups. Widening access to PD where it is safe and appropriate may help to reduce dialysis costs.

Previous papers have studied the cost of treating patients who need dialysis for kidney failure. We reviewed these costs and looked for patterns. Dialysis was the most expensive part of treatment for people with kidney disease who have Medicare. Dialysis with private insurance was much more expensive than with Medicare. People with diabetes experienced higher costs of dialysis than those without diabetes. Dialysis in a hospital costs more than dialysis at home. There are opportunities to reduce the cost of dialysis that should be explored further, such as more use of low-cost medication that can prevent the worsening of kidney disease and reduce the need for dialysis.