Recommendations For Clinical Care Research Articles

Cardiac Involvement in LAMA2-Related Muscular Dystrophy and SELENON-Related Congenital Myopathy: A Case Series.

LAMA2-related muscular dystrophy (LAMA2-MD) and SELENON-related myopathy (SELENON-RM) are two rare neuromuscular diseases characterized by proximal and axial muscle weakness, scoliosis, spinal rigidity, low bone quality and respiratory impairment. Cardiac involvement has previously been described in retrospective studies and case reports, but large case series and prospective studies in unselected cohorts are lacking. The objective of this study is to conduct prevalence estimations, perform cardiac phenotyping, and provide recommendations for clinical care. In this case series including two time points, we conducted comprehensive assessments with electrocardiography (ECG) and transthoracic echocardiography (TTE). ECGs were systematically assessed for a large subset of variables. TTE included left and right ventricular ejection fraction (LVEF/RVEF) and left ventricular global longitudinal strain (GLS), the latter being a more early and sensitive marker of left ventricular dysfunction. 21 LAMA2-MD (M = 5; 20±14 years) and 10 SELENON-RM patients (M = 7; 18±12 years) were included. In most patients, QRS fragmentation and Q waves, markers of heterogeneous ventricular activation, were present both at baseline and at follow-up. GLS was abnormal (age specific in children, > -18% in adults) in 33% of LAMA2-MD and 43% of SELENON-RM patients at baseline. Reduced LVEF (<52% in males, <54% in females and <55% in pediatric population) was observed in three LAMA2-MD patients at baseline and in none of the SELENON-RM patients. GLS and LVEF did not change between baseline and follow-up. RVEF was normal in all patients. ECG abnormalities and abnormal GLS are prevalent in LAMA2-MD and SELENON-RM, yet abnormal LVEF was only seen in LAMA2-MD patients. One LAMA2-MD patient had a clinically relevant deterioration in LVEF during 1.5-year follow-up. We advise routine screening of all patients with LAMA2-MD or SELENON-RM with ECG and echocardiography at diagnosis, minimally every two years from second decade of life and if new cardiac signs arise.

Managing vitreoretinal complications in uveal melanoma: Surgical treatment and practical considerations.

In the past few decades, the primary management for uveal melanoma has evolved from enucleation to eye-preservingtreatments. However, despite achieving ahigh rate of local tumour control, complications following eye-preservingtreatments still occur and are partly responsible for functional loss and secondary enucleation. A literature review by a broad international panel. We summarised the current literature on utilizing vitreoretinal (VR) surgery for managing the complications of uveal melanoma. We also provided insights from the authors' personal experience and practical recommendations for clinical care. With the advancement of VR instruments and surgical techniques and the combination of VR and ocular oncology knowledge ("Onco-VR"), it is now possible to manage or even prevent complications such as vitreous haemorrhage, retinal detachment, and toxic tumour syndrome.

The S3 Guideline on the Treatment of Language Development Disorders: Summary of Recommendations

The S3 Guideline on the Treatment of Language Development Disorders: Summary of Recommendations Abstract: The German S3 Guidelines on the Treatment of Developmental Speech and Language Disorders (AWMF: No. 049-015) were published on the AWMF homepage at the end of 2022. The German Society for Phoniatrics and Paedaudiologie coordinated the work and developed the guideline text together with linguists and speech and language therapists. Many scientific medical societies consented to the respective recommendations. For the first time in the German-speaking area, the guideline group reviewed international research results on the treatment of various speech and language disorders and formulated evidence- or consensus-based recommendations for clinical care. The present article summarizes these recommendations and evaluates the guidelines from the perspective of child and adolescent psychiatry and psychotherapy.

Long-Term Neurodevelopmental Outcomes in Children with Gastroschisis: A Review of the Literature.

This study aimed to investigate and present a review of the literature on long-term neurodevelopmental outcomes in children with gastroschisis. Gastroschisis is the most common abdominal wall defect. Children with gastroschisis are at high risk for premature birth, intestinal failure, sepsis, and repeated anesthesia exposure, which collectively increase the risk for adverse long-term neurodevelopmental outcomes. The existing literature on neurodevelopmental outcomes is limited in number, quality, and generalizability, creating a gap in clinical knowledge and care. Five internet databases were searched by a professional research librarian: Ovid MEDLINE, Scopus, Web of Science, PsycINFO, and Cochrane Library. Included articles were (1) published in English, (2) included postneonatal hospital discharge neurodevelopmental outcomes of children with gastroschisis, and (3) included patients under the age of 18 years. No date parameters were applied. The paucity of literature on long-term neurodevelopmental outcomes in gastroschisis children has left large gaps in the body of knowledge on post-hospital care of such children. In this review, 37 articles were found evaluating neurodevelopmental outcomes in gastroschisis and, while conclusions were contradictory, the literature broadly indicated the potential for neurodevelopmental deficits in the gastroschisis pediatric population. A significant limitation of this review was the heterogeneous samples included in available literature, which confounded the ability to determine cognitive risk of gastroschisis independent of other abdominal wall defects. Findings of this review demonstrate potential risk for neurodevelopmental deficits in the pediatric gastroschisis population exist, yet additional research is needed to definitively predict the significance, type, onset, and trajectory of neurodevelopmental impairment in this population. The significant gaps in long-term outcomes data have elucidated the need for prospective, longitudinal investigation of various cognitive domains in homogenous gastroschisis populations to properly evaluate prevalence of neurodevelopmental deficits and guide recommendations for long-term clinical care. KEY POINTS: · Limited literature exists regarding long-term neurodevelopmental outcomes in gastroschisis.. · There is some evidence to suggest worse cognitive behavioral outcomes in gastroschisis over time.. · Developmental surveillance, screening, and evaluation may be beneficial for gastroschisis patients..

The impact of robotic surgery on postoperative recovery in a patient with prostate cancer: a systematic literature review

Prostate cancer has become one of the most prevalent diseases globally, which affects millions of men, and is estimated to go up to 288.3 thousand patients in the U.S. in 2023. Therefore, its diagnosis and management process need innovations and continuous improvements to reduce morbidity and mortality rates. The advancement of robotic surgery, defined by its minimally invasive method, has changed the game. It is superior to open surgery practice, with fewer complications after the operation time, quicker recovery, and improved lifestyle. This systematic review rigorously and systematically analyzes studies of this kind and addresses the various operative outcomes, including wound complications, surgical site infections, and urinary and sexual functions. This systematic review will be explorative, aiming to establish the benefits of robotic surgery in terms of postoperative outcomes. We intend to contribute to the cardio-thoracic surgical literature by providing a comprehensive analysis of how this type of surgery affects the postoperative recovery of patients with prostate cancer, giving recommendations for future clinical care and research in this field.

A neuropsychological profile for high-grade primary central nervous system neuroendocrine tumor (CNS NET): a single-case study.

Objective: Neuroendocrine tumors (NETs) are neoplasms that primarily occur in the lungs, appendix, small intestine, pancreas, and rectum, and typically metastasize to the liver or lymph nodes. However, in rare cases NETs can originate in the central nervous system (CNS). Understanding primary CNS NET neuropsychological manifestations aids in recommendations for neurocognitive follow-up, treatment and lifestyle planning, and future research. Method: Given the dearth of neuropsychological research for CNS NETs, we present a case seen in a 43-year-old woman. Results: Initial and 8-month follow-up neuropsychological evaluations of the patient revealed a Major Neurocognitive Disorder where the pattern of findings was consistent with tumor location and additional treatment-related factors. Reliable change indices at her re-evaluation revealed declines in verbal and visual memory, with statistical, yet not clinical, improvements in different domains. Follow-up monitoring of comprehensive care continued to occur after neuropsychological evaluations. Conclusions: This case study assists in the characterization of initial and follow-up neuropsychological presentation of a primary CNS NET, where evaluations helped inform clinical care and functional recommendations. This case demonstrates the importance for neuropsychologists to have awareness of various conditions, even rare conditions, which can inform a systematic approach to research and clinical care with neuro-oncological populations.

A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress.

Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support. To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial. Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively. Four highly distressed carers were identified (N = 98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered. Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management.

Finding a needle in a haystack: The identification of clinical practice guidelines for psychosocial oncology through an environmental scan of the academic and gray literature.

Clinical practice guidelines (CPGs) are evidence-based tools well-suited to translate the latest research evidence into recommendations for routine clinical care. Given the rapid expansion of psychosocial oncology research, they represent a key opportunity for informing the treatment decisions of overburdened clinicians, standardizing service delivery, and improving patient-reported outcomes. Yet, there is little consensus on how clinicians can most effectively access these tools and little to no information on the current availability and scope of CPGs for the range of psychosocial symptoms and concerns experienced by patients with cancer. Our environmental scan consisted of an academic and gray literature designed to identify currently available CPGs addressing a range of cancer-related psychosocial symptoms. Findings revealed a total of 23 existing psychosocial oncology CPGs that met full eligibility criteria. The gray literature search was found to be more effective at identifying CPGs (n = 22) compared to the academic search (n = 9). Several concerns arose from the systematic search. The limited publication of CPGs in peer-reviewed journals may make clinicians and stakeholders more hesitant to implement CPGs due to uncertainties about the methodological rigor of the development process. Further, many existing CPGs are outdated or failed to be updated according to guideline recommendations, meaning that the recommendations may fall short of their purpose to translate up-to-date research findings. Future research should seek to systematically assess the quality of existing psychosocial oncology CPGs and shed light on the current state of implementation and adherence in clinical practice in order to better inform guideline developers on the current needs of the psychosocial oncology community.

When, where, and why should we look for vestibular dysfunction in people with diabetes mellitus?

The biochemistry of diabetes mellitus results in multi-system tissue compromise that reduces functional mobility and interferes with disease management. Sensory system compromise, such as peripheral neuropathy and retinopathy, are specific examples of tissue compromise detrimental to functional mobility. There is lack of clarity regarding if, when, and where parallel changes in the peripheral vestibular system, an additional essential sensory system for functional mobility, occur as a result of diabetes. Given the systemic nature of diabetes and the plasticity of the vestibular system, there is even less clarity regarding if potential vestibular system changes impact functional mobility in a meaningful fashion. This commentary will provide insight as to when we should employ diagnostic vestibular function tests in people with diabetes, where in the periphery we should look, and why testing may or may not matter. The commentary concludes with recommendations for future research and clinical care.

Patient Experiences of Brachytherapy for Locally Advanced Cervical Cancer: Hearing the Patient Voice Through Qualitative Interviews

BackgroundBrachytherapy for gynaecological cancer is reported to cause pain, anxiety and distress with no clear guidance for optimising patient experiences. The aim of this study was to explore patient experiences of brachytherapy and views on improvements. Materials and MethodsSemi-structured interviews were undertaken with patients who had received brachytherapy for locally advanced cervical cancer. Two cohorts were recruited: cohort one had recently had brachytherapy, cohort two were a year post brachytherapy. Four recruitment sites were selected, where brachytherapy is given in different ways, some with short day case procedures and others having one or two overnight stays with applicators in place. Consecutive patients were invited to interview. Participants were asked to retell their brachytherapy story, with views on their care and ideas for improvement. Interviews were audio-recorded, transcribed and data analysed following Braun and Clarke's method for reflexive thematic analysis.16 ResultsThirty five interviews were conducted (20 in cohort one and 15 in cohort two). Participant's ages ranged from 28 to 87 years. The interview duration ranged from 22 to 78 minutes. Difficult and traumatic experiences were reported, including periods of severe pain and perceptions of poor care. However, some participants described positive experiences and what went well.Three themes were developed: 1) How I got through it 2) Unpleasantness, discomfort and the aftermath 3) Emotional consequences and traumaSome aspects of medium and long duration brachytherapy were found to be more problematic compared with short duration brachytherapy. Exploring experiences at one year post brachytherapy has provided insights into the long-lasting impact of brachytherapy experiences. ConclusionHearing the patient voice has demonstrated that further work is needed to improve patient care in modern brachytherapy techniques using different regimes and durations, to minimise difficult and traumatic patient experiences. Study insights will inform future work to develop clinical care recommendations.

How developmental coordination disorder affects daily life: The adolescent perspective

BackgroundFew studies have focused on the implications of developmental coordination disorder (DCD) in the teen years. Understanding the unique needs of adolescents with DCD and the challenges they face are imperative to inform clinical care. AimTo understand how DCD affects daily life from adolescents living with the disorder. MethodsParticipants were recruited from a database of adolescents who were formally diagnosed with DCD in childhood. Nineteen semi-structured interviews of adolescents with DCD (13–18 years) were conducted and analyzed using an interpretive description approach. ResultsData analysis revealed four overarching themes: (1) Through the years; (2) Standing out, left out, opting out; (3) Rising into Resilience; and (4) Help me to be me. Adolescents with DCD face challenges in physical, cognitive, social, emotional, and mental health domains, but their success can be optimized through provision of support, fostering social connections, the use of strategies, and increasing public understanding. Few services currently exist for adolescents with DCD, as treatment is not standard of care. Conclusions and implicationsInsights gained from this study provide client-centred evidence to advocate for intervention for adolescents with DCD, and guide recommendations for clinical care and community support to meet the needs of this under-served population. What this paper adds?This paper qualitatively explores the lived experience of adolescents with DCD, adding to the limited research within this population. Expanding beyond the typical focus of motor challenges, this paper highlights the widespread influence of DCD on daily life, including in cognitive, mental health, and social-emotional domains. Common environmental contexts that exacerbate challenges during adolescent years are explored, including high school PE class and electives, learning to drive, beginning employment, and preparing for post-secondary education. Through an interpretive description methodology, this paper delves into clinical and practical solutions to support adolescents with DCD, from an individualized and client-centered perspective.

Bone quality in LAMA2-related muscular dystrophy and SELENON-related congenital myopathy, a one-year prospective natural history study

Fragility fractures are frequently reported in neuromuscular diseases and negatively influence functional prognosis, quality of life and survival. In LAMA2-related muscular dystrophy (LAMA2-MD) and SELENON(SEPN1)-related congenital myopathy (SELENON-RM) cross-sectional and prospective natural history studies on bone quality and fragility long bone fractures (LBFs) are lacking. We therefore aim to systematically assess bone quality and provide recommendations for clinical care. We performed a one-year prospective natural history study in 21 LAMA2-MD and 10 SELENON-RM patients including a standardized fracture history and bone quality assessment through dual energy Xray absorptiometry scan (DEXA-scan) and/or bone health index (BHI). Ninety percent of the LAMA2-MD and SELENON-RM patients showed low bone quality. Eight (38%) LAMA2-MD and five (50%) SELENON-RM patients had a history of fragility LBFs. During the one-year follow-up period, one LAMA2-MD patient (female, 3 years) experienced a fragility LBF of the right humerus. We found no difference in bone mineral density between baseline and one-year follow-up. Based on general international guidelines for osteoporosis, we advise adequate vitamin D and calcium intake, and standardized clinical follow-up through a DEXA-scan or BHI in all LAMA2-MD and SELENON-RM patients. On indication, patients should be referred to the pediatrics or internal medicine for consideration of additional treatments.

Pediatric AKI in the real world: changing outcomes through education and advocacy—a report from the 26th Acute Disease Quality Initiative (ADQI) consensus conference

BackgroundAcute kidney injury (AKI) is independently associated with increased morbidity and mortality across the life course, yet care for AKI remains mostly supportive. Raising awareness of this life-threatening clinical syndrome through education and advocacy efforts is the key to improving patient outcomes. Here, we describe the unique roles education and advocacy play in the care of children with AKI, discuss the importance of customizing educational outreach efforts to individual groups and contexts, and highlight the opportunities created through innovations and partnerships to optimize lifelong health outcomes.MethodsDuring the 26th Acute Disease Quality Initiative (ADQI) consensus conference, a multidisciplinary group of experts discussed the evidence and used a modified Delphi process to achieve consensus on recommendations on AKI research, education, practice, and advocacy in children.ResultsThe consensus statements developed in response to three critical questions about the role of education and advocacy in pediatric AKI care are presented here along with a summary of available evidence and recommendations for both clinical care and research.ConclusionsThese consensus statements emphasize that high-quality care for patients with AKI begins in the community with education and awareness campaigns to identify those at risk for AKI. Education is the key across all healthcare and non-healthcare settings to enhance early diagnosis and develop mitigation strategies, thereby improving outcomes for children with AKI. Strong advocacy efforts are essential for implementing these programs and building critical collaborations across all stakeholders and settings.

Infants Eligible for Neonatal Hypoglycemia Screening

Neonatal hypoglycemia is common, occurring in up to 50% of infants at risk for hypoglycemia (infant of diabetic mother [IDM], small for gestational age [SGA], large for gestational age [LGA], and preterm) and is associated with long-term neurodevelopmental impairment. Guidelines recommend screening infants at risk of hypoglycemia. The proportion of infants who require screening for neonatal hypoglycemia is unknown. To determine the proportion of infants eligible for neonatal hypoglycemia screening using criteria from the highest-scoring critically appraised clinical guideline. This systematic review of the literature was conducted to identify clinical practice guidelines for neonatal hypoglycemia and took place at a tertiary maternity hospital in Auckland, New Zealand. Eligible guidelines were critically appraised using the Appraisal of Guidelines for Research and Evaluation II tool. Using screening criteria extracted from the highest-scoring guideline, the proportion of infants eligible for neonatal hypoglycemia screening was determined in a retrospective observational cohort study of infants born January 1, 2004, to December 31, 2018. Data were analyzed by logistic regression. Infant participants were included if gestational age was 35 weeks or more, birth weight was 2000 g or more, and they were not admitted to a neonatal intensive care unit less than 1 hour after birth. The data were analyzed from November 2022 through February 2023. A total of 101 372 infants met the inclusion criteria. Risk factors for neonatal hypoglycemia. Proportion of infants eligible for neonatal hypoglycemia screening. The study team screened 2366 abstracts and 18 guidelines met inclusion criteria for appraisal. There was variability in the assessed quality of guidelines and a lack of consensus between screening criteria. The highest-scoring guideline defined screening criteria as: IDM, preterm (less than 37 weeks' gestation), SGA (less than 10th percentile), birth weight of less than 2500 g or more than 4500 g, LGA (more than 90th percentile), or gestational age more than 42 weeks. A total of 101 372 infants met criteria for inclusion in the cohort study; median (IQR) gestational age was 39 (38-40) weeks and 51% were male. The overall proportion of infants eligible for screening was 26.3%. There was an increase in the proportion of eligible infants from 25.6% to 28.5% over 15 years, which was not statistically significant after adjustment for maternal age, body mass index, ethnicity, and multiple pregnancy (odds ratio, 0.99; 95% CI, 0.93-1.03; change in proportion per year). A systematic review found that practice guidelines providing recommendations for clinical care of neonatal hypoglycemia were of variable quality with is a lack of consensus regarding definitions for infants at risk for hypoglycemia. In the cohort study, one-quarter of infants were eligible for hypoglycemia screening. Further research is required to identify which infants may benefit from neonatal hypoglycemia screening.

Preventing Pediatric Medical Traumatic Stress in a Pediatric Urology Outpatient Setting: Application of the Pediatric Psychosocial Preventative Health Model (PPPHM).

The objectives of this topical review are to (1) increase understanding of pediatric medical traumatic stress (PMTS) in pediatric urology populations through literature review, (2) identify a theoretical model to guide prevention of PMTS in this population, and (3) provide clinical care recommendations based on the model identified. Authors introduce a new term "uropsychology" to describe psychological practice that specializes in the treatment of urology patients. Pediatric uropsychologists from 5 pediatric medical care centers gathered to discuss their experience with treating PMTS in their settings and to review existing literature related to PMTS in pediatric urology, PMTS in other populations, and established models for prevention. Authors provide recommendations based on literature review for preventing PMTS in a pediatric urology population. Gaps in the evidence base for preventing PMTS in this population are identified. Authors provide a series of clinical care recommendations, utilizing clinical experience, and the Pediatric Psychosocial Preventative Health Model (PPPHM) as a framework. While there is limited research on PMTS in pediatric urology populations, urologic interventions can be perceived as invasive, painful, distressing, and traumatic. Application of the PPPHM can guide prevention and intervention efforts. Future research is needed to characterize PMTS in this population, evaluate the efficacy of trauma-informed prevention and intervention practices, and develop screening measures that accurately identify at-risk patients. Authors recommend intradisciplinary collaboration among uropsychologists, urology specialists, and patients and families to create formal standards of care, avenues for other future research, and equitable access to uropsychology care.

Conducting inclusive research in genetics for transgender, gender-diverse, and sex-diverse individuals: Case analyses and recommendations from a clinical genomics study.

A person's phenotypic sex (i.e., endogenous expression of primary, secondary, and endocrinological sex characteristics) can impact crucial aspects of genetic assessment and resulting clinical care recommendations. In studies with genetics components, it is critical to collect phenotypic sex, information about current organ/tissue inventory and hormonal milieu, and gender identity. If researchers do not carefully construct data models, transgender, gender diverse, and sex diverse (TGSD) individuals may be given inappropriate care recommendations and/or be subjected to misgendering, inflicting medical and psychosocial harms. The recognized need for an inclusive care experience should not be limited to clinical practice but should extend to the research setting, where researchers must build an inclusive experience for TGSD participants. Here, we review three TGSD participants in the Family History and Cancer Risk Study (FOREST) to critically evaluate sex- and gender-related survey measures and associated data models in a study seeking to identify patients at risk for hereditary cancer syndromes. Furthermore, we leverage these participants' responses to sex- and gender identity-related questions in FOREST to inform needed changes to the FOREST data model and to make recommendations for TGSD-inclusive genetics research design, data models, and processes.

Provider adherence to clinical care recommendations for infants and children who died in seven low- and middle-income countries in the Child Health and Mortality Prevention Surveillance (CHAMPS) network

Most childhood deaths globally are considered preventable through high-quality clinical care, which includes adherence to clinical care recommendations. Our objective was to describe adherence to World Health Organization recommendations for the management of leading causes of death among children. We conducted a retrospective, descriptive study examining clinical data for children aged 1-59 months who were hospitalized and died in a Child Health and Mortality Prevention Surveillance (CHAMPS) catchment, December 2016-June 2021. Catchment areas included: Baliakandi and Faridpur, Bangladesh; Kersa, Haramaya, and Harar, Ethiopia; Kisumu and Siaya, Kenya; Bamako, Mali; Manhiça and Quelimane, Mozambique; Makeni, Sierra Leone; Soweto, South Africa. We reviewed medical records of those who died from lower respiratory tract infections, sepsis, malnutrition, malaria, and diarrheal diseases to determine the proportion who received recommended treatments and compared adherence by hospitalization duration. CHAMPS enrolled 460 hospitalized children who died from the leading causes (median age 12 months, 53.0% male). Median hospital admission was 31h. There were 51.0% (n=127/249) of children who died from lower respiratory tract infections received supplemental oxygen. Administration of intravenous fluids for sepsis (15.9%, n=36/226) and supplemental feeds for malnutrition (14.0%, n=18/129) were uncommon. There were 51.4% (n=55/107) of those who died from malaria received antimalarials. Of the 80 children who died from diarrheal diseases, 76.2% received intravenous fluids. Those admitted for ≥24h more commonly received antibiotics for lower respiratory tract infections and sepsis, supplemental feeds for malnutrition, and intravenous fluids for sepsis than those admitted <24h. Provision of recommended clinical care for leading causes of death among young children was suboptimal. Further studies are needed to understand the reasons for deficits in clinical care recommendation adherence. Bill & Melinda Gates Foundation.

Facilitators and challenges to transitioning to self-catheterization: Patient and caregiver perspectives.

Clean intermittent catheterization (CIC) is a well-established method of managing lower urinary tract dysfunction. Depending on the age at introduction, caregivers might perform CIC initially but then transition responsibility to their children. Little is known about how to support families during this transition. Our aim is to learn the facilitators and challenges experienced when supporting the transition from caregiver-led CIC to patient self-CIC. A phenomenological approach was used to gather information from caregivers and children >12 years through semistructured interviews. Thematic analysis was utilized to generate themes around experience with the transition from caregiver-led CIC to patient self-CIC. Of the 40 families interviewed, 25 families underwent successful transition to patient self-CIC. Analysis of excerpts identified a three-step process, including (1) desiring to learn self-CIC,(2) practical learning of CIC techniques, and (3) mastering of techniques leading to emotional and physical independence. Many families experienced challenges in transitioning to self-CIC, including patient or caregiver reluctance, improper equipment, past negative experiences, lack of knowledge about urinary tract anatomy and function, abnormal anatomy, and/or moderate to severe intellectual disability. Authors reviewed interventions to address challenges and provide clinical care recommendations to enhance success during the transition to patient self-CIC. No prior studies have identified this stepwise process that occurs in the transition from caregiver-led CIC to patient self-CIC. Healthcare providers and school officials (where indicated) can support families during this transition, with attention to facilitators and challenges identified in this study.

Patient feedback and psychosocial outcomes of deep brain stimulation in people with obsessive–compulsive disorder

Severe and refractory psychiatric patients can experience complex and profound changes in symptomology, functioning and well-being from deep brain stimulation (DBS) therapy. Currently, the efficacy of DBS is assessed by clinician rated scales of primary symptoms, yet this does not capture the multitude of DBS mediated changes or represent the patient perspective. We aimed to elucidate the patient perspective in psychiatric DBS application by investigating 1) symptomatic, and 2) psychosocial changes, 3) therapeutic expectations and satisfaction, 4) decision-making capacity, and 5) clinical care recommendations from treatment refractory obsessive–compulsive disorder (OCD) DBS patients. Participants enrolled in an open label clinical trial of DBS therapy for OCD who had reached clinical response were invited to participate in a follow up survey. Participants completed a 1) feedback survey relating to goals, expectations, and satisfaction of therapy, and 2) self-report questionnaires on psychosocial functioning including quality of life, cognitive insight, locus of control, rumination, cognitive flexibility, impulsivity, affect, and well-being. Greatest change was reported for quality of life, rumination, affect and cognitive flexibility. Participants reported realistic expectations, high satisfaction, adequate pre-operative education and decision-making capacity; and advocated for greater access to DBS care and more widespread support services. This is the first identified investigation on psychiatric patient perspectives of functioning and therapeutic outcomes following DBS. Insights from the study have implications for informing psychoeducation, clinical practices, and neuroethical debates. We encourage a greater patient-centred and biopsychosocial approach in evaluating and managing OCD DBS patients, by considering personally meaningful goals and addressing symptomatic and psychosocial recovery.

NF1 Recommendation-Based Care Delivery: A Survey of Patients and Caregivers (P3-7.002)

NF1 Recommendation-Based Care Delivery: A Survey of Patients and Caregivers (P3-7.002)