Factors associated with non-adherence to medications in systemic lupus erythematosus: Results from a Swedish survey.

OBJECTIVE: To identify determinants of medication non-adherence in a Swedish population of systemic lupus erythematosus (SLE). METHODS: Patients with SLE from Karolinska and Örebro University Hospitals participated in a survey-based cross-sectional study. Demographics, disease activity, organ damage, HRQoL (LupusQol, EQ-5D-5 L), medication non-adherence (<80% on CQR-19 or MASRI) and beliefs about medicines (BMQ) were registered. MASRI was used to report adherence to different drugs/drug classes, categorised into (i) antimalarial agents (AMA), (ii) glucocorticoids and (iii) other SLE medications. Multivariable logistic regression adjusted for age, sex, disease activity and organ damage. RESULTS: Among 205 respondents, the median age was 52.0 years (IQR: 34.0-70.0), 86.3% were women, 66.8% were non-adherent to their medications according to CQR-19, and 6.6% and 6.3% were non-adherent to AMA and glucocorticoids, respectively, according to MASRI. Positive beliefs about glucocorticoids (OR; 95% CI: 0.77; 0.59-0.99; p = .039) and medications overall (0.71; 0.52-0.97; p = .029) were protective against non-adherence to glucocorticoids. Anxiety/depression (3.09; 1.12-8.54; p = .029), medication concerns (1.12; 1.05-1.20; p < .001) and belief that medications are overused (1.30; 1.15-1.46; p < .001) or harmful (1.36; 1.19-1.56; p < .001) were associated with medication non-adherence (CQR-19); beliefs in the necessity of medications (0.73; 0.65-0.82; p < .001) and positive beliefs in medications were protective (0.72; 0.60-0.86; p < .001). No associations were found between other investigated factors and medication non-adherence. CONCLUSIONS: Beliefs about medications were a major determinant of medication non-adherence. Patient education may help alleviate the negative impact of misinformation/unawareness on adherence.

Psychiatric assessment for patients who decline cancer treatment: perspectives from medical residents.

PURPOSE: Among patients with cancer, a comorbid mental disorder is associated with higher mortality. This could be partially attributed to reduced access to oncological care, sometimes due to treatment refusal. Recommendations were issued in 2018 by the French and Francophone Society of Psycho-Oncology concerning the management of oncological treatment refusal. This study aimed to examine oncology residents' view on psychiatric assessment in this context. METHODS: In February 2021, we conducted a descriptive, observational, cross-sectional pilot study among French residents involved in oncology regarding their management of cancer treatment refusal and the importance they assign to psychiatric assessment, using an online questionnaire with 12 multiple-choice questions. RESULTS: Among 87 respondents, only 35.6% systematically explore the history of mental disorders when facing cancer treatment refusal. Even in cases with a known history of mental disorders, only 42.5% systematically refer the patient to a psychiatrist. 96.5% of them were unaware of the 2018 recommendations. CONCLUSION: The importance given to psychiatric assessment in cases of oncological treatment refusal remains insufficient. Qualitative studies are needed to understand the underlying reasons for this refusal. The development of psychiatric consultation-liaison interventions in oncology centers is necessary to improve the management of these cases and provide appropriate training.

A Mixed-Methods Study on Topical Fluoride Beliefs and Refusal Behaviors for Caregivers of Children with Special Health Care Needs.

OBJECTIVE: To understand topical fluoride-related beliefs and refusal behaviors for caregivers of children with special health care needs (CSHCN). METHODS: This was an explanatory sequential mixed methods study. For the quantitative analyses, we surveyed 520 caregivers to (a) compare fluoride-related beliefs between caregivers of CSHCN and caregivers of healthy children and (b) evaluate the association between special health care need (SHCN) status and topical fluoride refusal. We used logistic regression models to generate unadjusted odds ratios, confounder-adjusted odds ratios (AOR), and 95% confidence intervals (CI). For the qualitative analyses, we interviewed 56 caregivers who refused or were hesitant about topical fluoride. Data were coded deductively and compared by SHCN status to an existing conceptual model of topical fluoride refusal. RESULTS: In the quantitative analysis, 41.3% of caregivers refused or thought about refusing topical fluoride. There were no significant differences in fluoride beliefs by SHCN status (p-values > 0.05) nor was there a significant association between SHCN status and topical fluoride refusal (AOR: 0.65, 95% CI 0.37-1.14; p = 0.13). In the qualitative analysis, the relative importance of each domain of the conceptual model was similar between the caregiver groups. Two differences were that all caregivers of CSHCN thought fluoride was unnecessary and wanted to keep chemicals out of their child's body. CONCLUSIONS FOR PRACTICE: While caregivers of CSHCN were not more likely to refuse topical fluoride than caregivers of healthy children, there may be important differences in the underlying reasons for refusing topical fluoride.

Non-Psychiatric Treatment Refusal in Patients with Depression: How Should Surrogate Decision-Makers Represent the Patient's Authentic Wishes?

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or "authentic" self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a "restorative representation" model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their "truest self" would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient's treatment refusal and previously undiagnosed depression led to difficulty determining the patient's authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions.

Communication About Complementary and Alternative Medicine When Patients Decline Conventional Cancer Treatment: Patients' and Physicians' Experiences.

BACKGROUND: Complementary and alternative medicine (CAM) is a broad set of nonconventional practices used alongside or instead of conventional treatment: The latter poses obvious risks related to cancer prognosis. Patient-physician dialogue about CAM is crucial for patient safety and mutual trust. Little is known about communication in the rare situations when patients decline recommended cancer treatment and consider using CAM. The objective of this study was to explore patients' and physicians' experiences from situations when patients decline recommended cancer treatment and consider using CAM. MATERIALS AND METHODS: Semi-structured interviews were carried out with 7 CAM-using cancer patients who had declined some or all conventional treatment as well as 10 physicians from oncology and palliative care. Framework analysis was used. RESULTS: Regarding treatment choices, there was a dissonance between physicians' focus on medical reasoning and patients' expression of complex values. Physicians' difficulty in understanding patients' treatment decline was exacerbated when patients considered using CAM, impairing communication even further. Inequalities in roles resulting in power struggles risked pushing both parties toward extreme and inflexible standpoints. Despite these challenges regarding treatment choices and hierarchical roles, both parties considered open and respectful communication as crucial. CONCLUSIONS: This study highlights the difficulty of shared decision-making in practice when patients' and physicians' views on treatment decisions deviate in clinically challenging situations. Our results point to a need to address the complexity of these situations, pay attention to patients' values, and improve knowledge among physicians about CAM.

Overcoming refusal of treatment in pediatric cancer without legal involvement: A descriptive case series from interviews with pediatric oncologists.

To describe strategies that pediatric oncologists utilize to persuade families to initiate or continue chemotherapy after refusing treatment, we examined transcripts from interviews of oncologists with relevant experience. We identified three cases in which the pediatric oncologists' approaches led to voluntary acceptance of recommended treatment without legal intervention. Strategies used include direct communication with alternative medicine providers, time-limited trial of alternative therapy, and praying with the family. While we cannot conclude whether these approaches could be generalized to other cases, they offer ideas for pediatric oncologists to consider when facing the decision to seek judicial involvement or discontinue persuasive efforts.

Perioperative management of patients declining transfusions of blood components-National survey of anaesthesiologists, abdominal surgeons and obstetricians in Denmark.

Perioperative management of patients declining transfusions of blood products can be challenging both ethically and clinically. Jehovah's Witnesses (JW) decline treatment with blood products and have published a list of interventions they might accept as substitutes. No detailed documentation of available substitute interventions at Danish hospitals exists. Likewise, no national guidelines exist on how to optimise patients who refuse to receive treatment with blood products. The primary aim was to investigate which treatments are currently available to healthcare professionals in Denmark when treating patients who refuse transfusion of blood components. Additionally, we wanted to investigate how many departments have local guidelines for treatment for this group of patients. Based on our findings we would suggest potential improvements in the treatment of patients declining transfusion of blood components. Consultants from Danish departments of anaesthesiology, abdominal surgery and obstetrics were invited to participate in a nationwide cross-sectional online survey. The questionnaire explored available interventions offered perioperatively. Respondents were all on-call consultants. The questionnaire underwent content, face and technical validation during pilot testing. Ninety-six of 108 (89%) respondents from 55 departments completed the questionnaire. Thirty-five (36%) respondents reported having a departmental guideline mostly dealing with judicial aspects regarding patients declining transfusions with blood, and 34 (35%) would in collaboration with other professionals make an interdisciplinary strategy for patients declining transfusions with blood. For patients declining treatment with blood products in anticoagulant treatment, and hence with a greater risk of bleeding, reverting treatment is essential. Depending on the type of anticoagulant, between 31 (32%) and 59 (60%) of respondents reported locally available guidelines for reverting anticoagulant treatments. We found a considerable variation and limited availability of interventions to minimise blood loss in patients declining transfusion of blood components. This scarcity of local guidelines together with the considerable variation of available treatment documented in our survey could possibly be enhanced by a lack of national guidelines.

Racial and ethnic disparities in surgery for kidney cancer: a SEER analysis, 2007-2014.

BACKGROUND AND OBJECTIVES: Compared with White patients, Black and American Indian/Alaskan Native (AI/AN) patients experience higher rates of kidney cancer incidence, and Black, AI/AN, and Hispanic patients face later stages of disease at diagnosis, poorer survival rates, and greater risk of mortality. Despite the importance that appropriate treatment has in ensuring positive outcomes, little is known about the association between race and ethnicity and receipt of treatment for kidney cancer. Accordingly, the aim of this study was to explore differences in receipt of treatment and patterns of refusal of recommended treatment by race and ethnicity. DESIGN: 96,745 patients ages 45-84 with kidney cancer were identified in the Surveillance, Epidemiology, and End Results (SEER) program between 2007 and 2014. Logistic regression models were used to examine the association of race and ethnicity with treatment and with patient refusal of recommended treatment. Outcomes of interest were (1) receiving any surgical procedure, and (2) refusing recommended surgery. RESULTS: Relative to White patients, Black and AI/AN patients had lower odds of undergoing any surgical procedure (OR = 0.76; 95% CI: 0.72-0.81; p < 0.001, and OR = 0.92; 95% CI: 0.76-1.10; p = 0.36, respectively) after adjusting for gender, age, insurance status, stage at diagnosis, unemployment status, education status, and income as additive effects. Black and AI/AN patients also had higher odds of refusing recommended surgery (OR = 1.93; 95% CI: 1.56-2.39; p < 0.001, and OR = 1.99; 95% CI: 1.05-3.76; p = 0.035, respectively). Hispanic patients had slightly higher odds of undergoing any surgical procedure (OR = 1.10; 95% CI: 1.04-1.17; p = 0.001) and lower odds of refusal (OR = 0.67; 95% CI: 0.50-0.90; p = 0.007, respectively). CONCLUSIONS: Compared with White patients, Black patients were less likely to receive potentially life-saving surgery, and both Black and AI/AN patients were more likely to refuse recommended surgery.

Radiation in an emergency situation: attempting to respect the patient's beliefs as reported by a minor.

BACKGROUND: Each individual's unique health-related beliefs can greatly impact the patient-clinician relationship. When there is a conflict between the patient's preferences and recommended medical care, it can create a serious ethical dilemma, especially in an emergency setting, and dramatically alter this important relationship. CASE PRESENTATION: A 56-year-old man, who remained comatose after out-of-hospital cardiac arrest, was rushed to our hospital. The patient was scheduled for emergency coronary angiography when his adolescent daughter reported that she and her father held sincere beliefs against radiation exposure. We were concerned that she did not fully understand the potential consequences if her father did not receive the recommended treatment. A physician provided her with in depth information regarding the risks and benefits of the treatment. While we did not want to disregard her statement, we opted to save the patient's life due to concerns about the validity of her report. CONCLUSIONS: Variations in beliefs regarding medical care force clinicians to incorporate patient beliefs into medical practice. However, an emergency may require a completely different approach. When faced with a patient in a life-threatening condition and unconscious, we should take action to prioritize saving their life, unless we are highly certain about the validity of their advance directives.

How do cancer patients refuse treatment? A grounded theory study.

BACKGROUND: All cancer patients, except for a small fraction, seek treatment after becoming aware of the disease. That small fraction do not seek any treatment due to various reasons, and this phenomenon is unknown to us. Therefore, the present study aimed to discover the reasons for treatment refusal in cancer patients. METHODS: This qualitative grounded theory study was conducted on 22 participants including patients, caregivers, physicians, and nurses. Purposive theoretical sampling was employed. Data were collected through in-depth interviews. All interviews were gradually transcribed and analyzed. Data analysis was carried out through the three-step method of open, axial, and selective coding and was continued until theoretical saturation. Straussian Grounded Theory was used for data analysis. RESULTS: A total of 4 themes and 20 sub-themes were extracted in this study. The core variable extracted from the interviews was "resilience" Other related themes included encounter with cancer, fighting cancer, and coping with cancer. The findings showed that in the context of fighting cancer, patients lost their resilience through various processes and refused treatment. CONCLUSION: Cancer patients abandon the treatment in silence, oncologists and even family members being unaware of the matter. In other words, refusal of treatment is like an iceberg and the majority of the patients who have abandoned treatment are unknown to the health system. The model obtained in this study can increase the knowledge of the process that leads patients to lose their resilience against cancer and abandon treatment, which can increase the possibility of recognizing and predicting treatment refusal for oncologists.

[The psychological factors of renunciation of antitumoral therapy by women with breast cancer (international publications review)].

The article presents analytical review of studies considering problem of patient refusal from antitumoral treatment, in particular of women with breast cancer. The analysis of main results of empirical studies describes factors associated with patient refusal from treatment. Among factors affecting decision making related to patient voluntarily refuse of treatment are toxicity of treatment (nausea and vomiting), senile age, disease stage, availability and type of medical insurance, characteristics of family status. Besides objective factors, such subjective factors as beliefs, values ​​of patients are described. The deficiency of research studies concerning psychological factors of patient refusal of antitumoral treatment is established. However, patient loyalty to antitumoral treatment plays decisive role in prognosis of survival and favorable course of disease. In connection with that, studies covering such areas as psychological characteristics of personality of patients refusing of antitumoral treatment, verification of psychological factors of this voluntary refusal are required in order to organize continuum of oncological care of patients, their psychological maintenance and increasing of commitment to treatment.

Individual, healthcare professional and system-level barriers and facilitators to initiation and adherence to injectable therapies for type 2 diabetes: A systematic review and meta-ethnography.

AIMS: To review and synthesise the contemporary qualitative evidence, relating to the individual, healthcare professional and system-level barriers and facilitators to injectable therapies in people with type 2 diabetes, and evaluate (using an intersectional approach to explore the diverse perspectives of different identities) whether views have changed with treatment and guideline advancements. METHODS: A meta-ethnography approach used. Eight databases searched from the years 2006 (GLP-1 analogues introduced) to February 2021. Study selection (using a pre-defined inclusion criteria), quality appraisal and data extraction, conducted independently by two reviewers. RESULTS: Screened 7143 abstracts, assessed 93 full-text papers for eligibility and included 42 studies-using data from 818 individuals with type 2 diabetes and 160 healthcare professionals. Studies covered a diverse range of views from healthcare professionals and individuals, including those relating to older adults and people from ethnic migrant backgrounds, and 10 studies rated moderate to strong research value. Key themes abstracted: barriers (physical/psychological/social) and facilitators (motivation/capability/opportunity). CONCLUSIONS: The first synthesis of contemporary qualitative data to adopt an intersectionality approach and explore diverse views relating to barriers and facilitators that influence engagement with injectable treatments for type 2 diabetes. A model is presented to help patients, health practitioners and policy makers identify barriers and facilitators and understand the complex interplay of physical, psychological and social factors involved when prescribing injectable therapies. Despite advances in injectable treatments and guidelines, findings highlight the many barriers that still exist and show how strongly held culturally-specific health beliefs of people from diverse socio-economic and ethnic backgrounds can become substantial obstacles to treatment.

Non-transport after Prehospital Naloxone Administration Is Associated with Higher Risk of Subsequent Non-fatal Overdose.

Objective: U.S. opioid overdoses increased nearly sixfold from 1999 to 2018, and greater than 1% of all emergency medical services (EMS) encounters now involve naloxone administration. While "treat and release" protocols may have low short-term mortality, the risk of subsequent non-fatal overdoses is not known. This study compares the risk of repeat overdose encounters between patients transported to an emergency department (ED) and those who refused transport after prehospital naloxone administration. Methods: All EMS charts within a large single-tier fire-based urban EMS system between January 1 and August 31, 2018 were reviewed if either naloxone administration or a clinical impression related to opioid overdose was documented. Charts were excluded if there was no documented evidence of an opioid toxidrome (respiratory depression or altered mental status), if there was another clear explanation for the symptoms (e.g., hypoglycemia), or if naloxone was not administered. Ten percent of charts were reviewed by a second author to assess reliability. Cox regression (survival analysis) was used to estimate the risk of a subsequent EMS encounter with naloxone administration following an index encounter with naloxone administration. Results: Of the 2143 charts reviewed, 1311 unique patients with 1600 overdose encounters involving naloxone administration were identified. Inter-rater reliability for chart inclusion was strong [κ = 0.83 (95% CI: 0.72-0.90)]. Police/bystanders administered naloxone in 208/1600 (13.0%) encounters. A substantial proportion of encounters resulted in transport refusal (674/1600, 42.1%). The final Cox model included only refusal vs. acceptance of transport to an ED during the index EMS encounter. Patient age, gender, and naloxone administration prior to EMS arrival were not statistically significant in univariate or multivariable analyses, nor were they significant confounders. Refusal of transport was associated with a hazard ratio of 1.66 (95% CI: 1.23-2.23) for subsequent EMS encounters with naloxone administration. Conclusions: Non-transport after prehospital naloxone administration is associated with an increased risk of subsequent non-fatal overdose requiring EMS intervention. Limitations include the use of a single EMS agency as patients may have had uncaptured overdose encounters in neighboring municipalities.

[Indications, consent and treatment limitation in emergency medicine]. / Indikation, Einwilligung und Therapielimitierung in der Akutmedizin.

Physicians in acute and emergency medicine are increasingly confronted by geriatric, multimorbid or oncology patients with advanced stages of disease. Lacking further information or specification about the patient's will may result in overtreatment. An increasing part of the German population has advance directives; however, there is still uncertainty among physicians when dealing with advance directives and health care proxies. Misinterpretation may entail civil and criminal consequences or may lead to a withdrawal of the license to practice. Advance directives for instance are not equivalent to a general waiving of treatment and therapy. Besides life support, terminal care and its legal aspects must also be considered in acute medicine.

New injectable antiretroviral therapy for HIV facilitates novel treatment pathways for persons without capacity to consent to medical treatment.

OBJECTIVE: The development of new injectable antiretroviral therapy facilitates treatment for Human immunodeficiency virus (HIV) positive individuals who lack capacity to consent, posing a safety risk to both themselves and the wider community. We consider pathways to enforce treatment and propose an algorithm to determine the most appropriate legal instrument for application. CONCLUSION: Legislative safeguards in mental health and guardianship legislation provide oversight and protection for those who suffer from illness and require coercive treatment. These frameworks have utility in the treatment of HIV patients who lack capacity to consent to treatment.

Nurse roles in the advance directive system in Korea.

BACKGROUND: In 2016, the Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care was implemented in Korea, providing a broad framework for end-of-life decision-making for the first time and making advance directives legally recognized documents. This Act can correct long-standing under-recognition of patients as valid decision makers for their own treatment choices. However, limited recognition of patient self-determination, rigid legal forms for documenting patient wishes, and the roles of family under the Act may pose challenges both to patients and nurses. AIM: This paper critiques whether this newly introduced system of advance directives can truly guarantee protection of the patient's interests and respect for patient autonomy in real life​, and discusses ethical and legal issues regarding the Act. SOURCE OF EVIDENCE: We reviewed the current system of advance directives by raising three questions: (1) Do advance directives reflect a competent person's voluntary and informed choice?, (2) Are advance directives applicable in diverse clinical situations?, and (3) Does the Korean advance directive system ensure that such directives are honored in reality? CONCLUSION: Although the Act is an important first step in respecting patient autonomy in end-of-life decision-making, it remains inadequate as it fails to provide thorough guidance in terms of the quality of writing process, applicability, and the guaranteed effects of advance directives. IMPLICATIONS FOR NURSING AND HEALTH POLICY: As nurses are best situated for addressing these limitations due to their roles and competencies in clinical practice, expanding the roles of nurses in every stage of advance directive practice could help achieve the original purpose of advance directives. This calls for a policy that promotes an expanded role of nurses to improve the quality of advance directive practice.

Ethical Challenges in Pediatric Oncology Care and Clinical Trials.

The care of pediatric cancer patients is a vast departure from cancer care of adults. While the available treatment modalities-chemotherapy, radiation, and surgery-are the same, the diseases, care-delivery, and outcomes differ greatly. And just as 'children are not just little adults,' pediatric bioethics occupies a distinct place within the broader field of bioethics. In this chapter, we will begin with an introduction to fundamental principles and frameworks for understanding ethical issues in pediatrics, highlighting the triadic nature of medical decision-making between a physician, the child-patient, and the child's parent as the surrogate decision-maker. We will then delve into further details of how these principles and frameworks shape the care of children with cancer, examining specific ethical challenges commonly encountered by pediatric oncologists. We will traverse this landscape by examining issues involving (a) informed consent; (b) research involving children; (c) end of life; (d) genetic and genomic testing; and (e) professionalism. We also examine ethical challenges in clinical research, in children and more broadly. While not an exhaustive exploration of the myriad ethical issues one might encounter in pediatric cancer medicine and clinical trials, this chapter provides readers with a foundation for further reading.

Factors Associated With Treatment Refusal and Impact of Treatment Refusal on Survival of Patients With Small Cell Lung Cancer.

BACKGROUND: With fewer than 7% of patients with small cell lung cancer (SCLC) surviving 5 years after diagnosis, the receipt of recommended treatment is of utmost importance for patient survival. Nevertheless, treatment refusal by patients with SCLC has not been studied well. Our study examined factors associated with treatment refusal and the effect of refusal on patient survival. METHODS: From the National Cancer Database, we analyzed data of 107,988 patients with SCLC diagnosed between 2003 and 2012. Treatment refusals were analyzed separately for chemoradiotherapy among patients with limited stage disease (LS-SCLC) and chemotherapy among those with extensive stage disease (ES-SCLC). We used logistic regression to investigate factors associated with treatment refusal. We estimated survival probability using the Kaplan-Meier method and compared survival of those who received and refused treatment using Cox proportional hazards regression analysis. RESULTS: The refusal rates of chemoradiotherapy among patients with LS-SCLC and chemotherapy among those with ES-SCLC were 1.34% and 4.70%, respectively. From 2003 to 2012, trends show an increase of refusals, especially among the patients with ES-SCLC who were recommended chemotherapy. Multivariable analyses showed that in both SCLC groups, older age at diagnosis (>70 years), female gender, uninsured status, and presence of comorbidities were associated with treatment refusals. Patients with LS-SCLC who refused chemoradiotherapy had a higher risk of mortality than those who received treatment (HR, 4.96; 95% CI, 4.45-5.53); the median survival of those who refused treatment was 3 months vs 18 months for those who received it (P < .001). Similarly, patients with ES-SCLC who refused chemotherapy had a higher risk of mortality than those who received treatment (HR, 3.69; 95% CI, 3.48-3.92); the median survival was 1 month vs 7 months, respectively (P < .001). CONCLUSIONS: Treatment refusal among patients with SCLC was associated with worse survival. Strategies to increase patient acceptance of the recommended treatment need to be studied further.

Familial hypercholesterolaemia: Experience of a tertiary paediatric lipid clinic.

AIM: To review the experience of a dedicated paediatric multidisciplinary lipid clinic in the management of familial hypercholesterolaemia (FH) by studying the demographics, clinical presentations as well as statin therapy and outcomes. METHODS: Retrospective database review of all patients under 18 years old seen in the lipid clinic at an Australian tertiary paediatric hospital between April 1999 and August 2017. Outcome measures collected included patient demographics, family history, lipid profile, age at treatment commencement, treatment outcomes and complications. RESULTS: One hundred and eight patients (53 males) were seen in the lipid clinic. Eighty-five had low-density lipoprotein cholesterol (LDL-C) levels at or above the 75th percentile for sex prior to treatment. Of these, 75 had a first-degree relative with hypercholesterolaemia and/or early cardiac death. Four patients had clinical manifestations. Thirty-two patients (14 males) were started on statin therapy for likely FH. LDL-C levels reduced by 2.4 mmol/L (1.4 to 2.7) in boys and 1.9 mmol/L (0.8 to 2.8) in girls at 12 month follow-up. Five patients reported side effects requiring adjustment in therapy. Main reasons for not starting statin therapy in eligible patients were parental refusal and/or lost to follow up (77%). CONCLUSION: A dedicated multidisciplinary lipid clinic is helpful for streamlining and monitoring management of paediatric FH. Clinical manifestations of FH are rare in children and may represent more severe form of FH or other lipid disorder. Statin therapy is efficacious and well tolerated but current recommended targets of treatment are difficult to attain. Greater awareness and coordinated services are required to overcome poor family engagement.

Leave against Medical Advice in Children: Rural Indian Perspective.

OBJECTIVES: To determine the burden and etiological factors of leave against medical advice (LAMA) in Indian children. METHODOLOGY: In this prospective study, legal guardians of 528 patients who took the decision of LAMA were interviewed (using structured question answers based multi-option) and data were captured over a period of 16 months. The resultant database was analyzed using standard statistical methods. RESULTS: About 6.12% of childhood LAMA cases were dealt out of total pediatric admission including newborns. Neonatal preponderance noted in cases of LAMA from intensive care unit (ICU; 57.14%, p < 0.05). The overall male (n = 293) to female (n = 235) ratio in this study was 1.25:1. Number of LAMA patients was higher from rural area (83.33%), mostly admitted in ICU (93.65%, Pearson's chi-squared test, p < 0.05). Higher proportion (29.47%) of patients with infection availed LAMA from neonatal age group but overall LAMA patients fall under category of respiratory disorders (22.35%). Interest of the domestics issues other than suffering child was considered primary during LAMA for those admitted in ward as compared with ICU patients [odds ratio (OR): 1.73, CI: 1.02-2.94, p < 0.05]. ICU patients were reportedly to be taken to private health care facility (OR: 1.93, CI: 1.06-3.49, p < 0.05). Duration of stay before taking LAMA from ward was <7 days (85.59%, OR: 0.19, CI: 0.11-0.35, p < 0.05). Upper-lower socio-economic class attributed financial constraint as the main reason for LAMA (Pearson's chi-squared test, Chi-square value: 152.23, p < 0.05). CONCLUSIONS: This study tried to elucidate the determinants of childhood LAMA in rural Indian setting.