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1.
Psychother Res ; : 1-11, 2024 May 08.
Article in English | MEDLINE | ID: mdl-38718140

ABSTRACT

OBJECTIVE: Positive regard (PR) reflects a therapist's unconditional prizing of their patient, which meta-analytically correlates positively with patient improvement. However, most research has been limited to single-participant ratings of PR at a specific time, which neglects the dyadic and dynamic nature of PR (i.e., fundamental to benefitting from therapist-offered PR is that a patient internalizes it). Testing this premise, we hypothesized that therapist-offered PR at one session would predict patient-felt PR at a subsequent session (two sessions later), which would in turn predict the patient's next-session outcome (within-patient mediation). METHOD: Eighty-four patients with generalized anxiety disorder received cognitive-behavioral therapy with or without motivational interviewing. Therapists and patients provided postsession ratings of their offered and felt PR, respectively, at odd-numbered sessions throughout treatment. Patients rated their worry following each even-numbered session. We used multilevel structural equation modeling to test our hypothesis. We explored whether treatment condition moderated the mediational path. RESULTS: As predicted, when a therapist regarded their patient more than usual following one session, the patient felt more regarded than usual. In turn, this internalized regard was negatively associated with worry. Treatment condition did not moderate this path. DISCUSSION: Results support internalized positive regard as a treatment-common, ameliorative relationship process.

3.
Chron Respir Dis ; 21: 14799731241240776, 2024.
Article in English | MEDLINE | ID: mdl-38512223

ABSTRACT

This state-of-the-art review provides an overview of the history of home mechanical ventilation (HMV), including early descriptions of mechanical ventilation from ancient and Renaissance perspectives and the mass development of ventilators designed for long-term use during the poliomyelitis epidemic. Seminal data from key clinical trials supports the application of HMV in certain patients with chronic obstructive pulmonary disease, neuromuscular disease and obesity-related respiratory failure. Innovative engineering coupled with refined physiological understanding now permits widespread delivery of home mechanical ventilation to a global population, using portable devices with advanced ventilatory modes and telemonitoring capabilities. Exponential growth in digital technology continues, and ongoing research is needed to understand how to harness clinical and physiological data to benefit patients and healthcare services in a clinically- and cost-effective manner.


Subject(s)
Pulmonary Disease, Chronic Obstructive , Respiration, Artificial , Humans , Obesity , Pulmonary Disease, Chronic Obstructive/therapy
4.
Chest ; 165(4): 929-941, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37844796

ABSTRACT

BACKGROUND: Respiratory muscle weakness can impair cough function, leading to lower respiratory tract infections. These infections are an important contributor to morbidity and mortality in patients with neuromuscular disease. Mechanical insufflation-exsufflation (MIE) is used to augment cough function in these patients. Although MIE is widely used, there are few data to advise on the optimal technique. Since the introduction of MIE, the recommended pressures to be delivered have increased. There are concerns regarding the use of higher pressures and their potential to cause lung derecruitment and upper airway closure. RESEARCH QUESTION: What is the impact of high-pressure MIE (HP-MIE) on lung recruitment, respiratory drive, upper airway flow, and patient comfort, compared with low-pressure MIE (LP-MIE), in patients with respiratory muscle weakness? STUDY DESIGN AND METHODS: Clinically stable patients using domiciliary MIE with respiratory muscle weakness secondary to Duchenne muscle dystrophy, spinal cord injury, or long-term tracheostomy ventilation received LP-MIE (30/-30 cm H2O) and HP-MIE (60/-60 cm H2O) in a random sequence. Lung recruitment, neural respiratory drive, and cough peak expiratory flow were measured throughout, and patients reported comfort and breathlessness following each intervention. RESULTS: A total of 29 patients (10 with Duchenne muscle dystrophy, eight with spinal cord injury, and 11 with long-term tracheostomy ventilation) were included in this study. HP-MIE augmented cough peak expiratory flow compared with LP-MIE (mean cough peak expiratory flow HP-MIE 228 ± 81 L/min vs LP-MIE 179 ± 67 L/min; P = .0001) without any significant change in lung recruitment, neural respiratory drive, or patient-reported breathlessness. However, in patients with more pronounced respiratory muscle weakness, HP-MIE resulted in an increased rate of upper airway closure and patient discomfort that may have an impact on clinical efficacy. INTERPRETATION: HP-MIE did not lead to lung derecruitment or breathlessness compared with LP-MIE. However, it was poorly tolerated in individuals with advanced respiratory muscle weakness. HP-MIE generates more upper airway closure than LP-MIE, which may be missed if cough peak expiratory flow is used as the sole titration target. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov; No.: NCT02753959; URL: www. CLINICALTRIALS: gov.


Subject(s)
Insufflation , Muscular Dystrophy, Duchenne , Respiratory Insufficiency , Spinal Cord Injuries , Humans , Cough , Dyspnea , Insufflation/adverse effects , Insufflation/methods , Muscular Dystrophy, Duchenne/complications , Respiration , Respiratory Insufficiency/etiology , Spinal Cord Injuries/complications
5.
Equine Vet J ; 56(2): 220-242, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37795557

ABSTRACT

BACKGROUND: Pituitary pars intermedia dysfunction (PPID) is a prevalent, age-related chronic disorder in equids. Diagnosis of PPID can be challenging because of its broad spectrum of clinical presentations and disparate published diagnostic criteria, and there are limited available treatment options. OBJECTIVES: To develop evidence-based primary care guidelines for the diagnosis and treatment of equine PPID based on the available literature. STUDY DESIGN: Evidence-based clinical guideline using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework. METHODS: Research questions were proposed by a panel of veterinarians and developed into PICO or another structured format. VetSRev and Veterinary Evidence were searched for evidence summaries, and systematic searches of the NCBI PubMed and CAB Direct databases were conducted using keyword searches in July 2022 and updated in January 2023. The evidence was evaluated using the GRADE framework. RESULTS AND RECOMMENDATIONS: The research questions were categorised into four areas: (A) Case selection for diagnostic testing, pre-test probability and diagnostic test accuracy, (B) interpretation of test results, (C) pharmacological treatments and other treatment/management options and (D) monitoring treated cases. Relevant veterinary publications were identified and assessed using the GRADE criteria. The results were developed into recommendations: (A) Case selection for diagnostic testing and diagnostic test accuracy: (i) The prevalence of PPID in equids aged ≥15 years is between 21% and 27%; (ii) hypertrichosis or delayed/incomplete hair coat shedding provides a high index of clinical suspicion for PPID; (iii) the combination of clinical signs and age informs the index of clinical suspicion prior to diagnostic testing; (iv) estimated pre-test probability of PPID should be considered in interpretation of diagnostic test results; (v) pre-test probability of PPID is low in equids aged <10 years; (vi) both pre-test probability of disease and season of testing have strong influence on the ability to diagnose PPID using basal adrenocorticotropic hormone (ACTH) or ACTH after thyrotropin-releasing hormone (TRH) stimulation. The overall diagnostic accuracy of basal ACTH concentrations for diagnosing PPID ranged between 88% and 92% in the autumn and 70% and 86% in the non-autumn, depending on the pre-test probability. Based on a single study, the overall diagnostic accuracy of ACTH concentrations in response to TRH after 30 minutes for diagnosing PPID ranged between 92% and 98% in the autumn and 90% and 94% in the non-autumn, depending on the pre-test probability. Thus, it should be remembered that the risk of a false positive result increases in situations where there is a low pre-test probability, which could mean that treatment is initiated for PPID without checking for a more likely alternative diagnosis. This could compromise horse welfare due to the commencement of lifelong therapy and/or failing to identify and treat an alternative potentially life-threatening condition. (B) Interpretation of diagnostic tests: (i) There is a significant effect of breed on plasma ACTH concentration, particularly in the autumn with markedly higher ACTH concentrations in some but not all 'thrifty' breeds; (ii) basal and/or post-TRH ACTH concentrations may also be affected by latitude/location, diet/feeding, coat colour, critical illness and trailer transport; (iii) mild pain is unlikely to have a large effect on basal ACTH, but caution may be required for more severe pain; (iv) determining diagnostic thresholds that allow for all possible contributory factors is not practical; therefore, the use of equivocal ranges is supported; (v) dynamic insulin testing and TRH stimulation testing may be combined, but TRH stimulation testing should not immediately follow an oral sugar test; (vi) equids with PPID and hyperinsulinaemia appear to be at higher risk of laminitis, but ACTH is not an independent predictor of laminitis risk. (C) Pharmacologic treatments and other treatment/management options: (i) Pergolide improves most clinical signs associated with PPID in the majority of affected animals; (ii) Pergolide treatment lowers basal ACTH concentrations and improves the ACTH response to TRH in many animals, but measures of insulin dysregulation (ID) are not altered in most cases; (iii) chasteberry has no effect on ACTH concentrations and there is no benefit to adding chasteberry to pergolide therapy; (iv) combination of cyproheptadine with pergolide is not superior to pergolide alone; (v) there is no evidence that pergolide has adverse cardiac effects in horses; (vi) Pergolide does not affect insulin sensitivity. (D) Monitoring pergolide-treated cases: (i) Hormone assays provide a crude indication of pituitary control in response to pergolide therapy, however it is unknown whether monitoring of ACTH concentrations and titrating of pergolide doses accordingly is associated with improved endocrinological or clinical outcome; (ii) it is unknown whether monitoring the ACTH response to TRH or clinical signs is associated with an improved outcome; (iii) there is very weak evidence to suggest that increasing pergolide dose in autumn months may be beneficial; (iv) there is little advantage in waiting for more than a month to perform follow-up endocrine testing following initiation of pergolide therapy; there may be merit in performing repeat tests sooner; (v) timing of sampling in relation to pergolide dosing does not confound measurement of ACTH concentration; (vi) there is no evidence that making changes after interpretation of ACTH concentrations measured at certain times of the year is associated with improved outcomes; (vii) evidence is very limited, however, compliance with PPID treatment appears to be poor and it is unclear whether this influences clinical outcome; (viii) evidence is very limited, but horses with clinical signs of PPID are likely to shed more nematode eggs than horses without clinical signs of PPID; it is unclear whether this results in an increased risk of parasitic disease or whether there is a need for more frequent assessment of faecal worm egg counts. MAIN LIMITATIONS: Limited relevant publications in the veterinary scientific literature. CONCLUSIONS: These findings should be used to inform decision-making in equine primary care practice.


Subject(s)
Horse Diseases , Pituitary Diseases , Pituitary Gland, Intermediate , Horses , Animals , Pergolide/therapeutic use , Horse Diseases/diagnosis , Horse Diseases/therapy , Pituitary Diseases/diagnosis , Pituitary Diseases/therapy , Pituitary Diseases/veterinary , Adrenocorticotropic Hormone , Insulin , Pain/drug therapy , Pain/veterinary , Primary Health Care
6.
Thorax ; 79(3): 281-288, 2024 Feb 15.
Article in English | MEDLINE | ID: mdl-37979970

ABSTRACT

Chronic respiratory disease can exacerbate the normal physiological changes in ventilation observed in healthy individuals during sleep, leading to sleep-disordered breathing, nocturnal hypoventilation, sleep disruption and chronic respiratory failure. Therefore, patients with obesity, slowly and rapidly progressive neuromuscular disease and chronic obstructive airways disease report poor sleep quality. Non-invasive ventilation (NIV) is a complex intervention used to treat sleep-disordered breathing and nocturnal hypoventilation with overnight physiological studies demonstrating improvement in sleep-disordered breathing and nocturnal hypoventilation, and clinical trials demonstrating improved outcomes for patients. However, the impact on subjective and objective sleep quality is dependent on the tools used to measure sleep quality and the patient population. As home NIV becomes more commonly used, there is a need to conduct studies focused on sleep quality, and the relationship between sleep quality and health-related quality of life, in all patient groups, in order to allow the clinician to provide clear patient-centred information.


Subject(s)
Noninvasive Ventilation , Respiratory Insufficiency , Sleep Apnea Syndromes , Humans , Hypoventilation , Quality of Life , Sleep , Respiratory Insufficiency/etiology , Respiratory Insufficiency/therapy , Sleep Apnea Syndromes/therapy
7.
Appl Clin Inform ; 14(5): 903-912, 2023 10.
Article in English | MEDLINE | ID: mdl-37967936

ABSTRACT

BACKGROUND: Patients and families at risk for health disparities may also be at higher risk for diagnostic errors but less likely to report them. OBJECTIVES: This study aimed to explore differences in race, ethnicity, and language preference associated with patient and family contributions and concerns using an electronic previsit tool designed to engage patients and families in the diagnostic process (DxP). METHODS: Cross-sectional study of 5,731 patients and families presenting to three subspecialty clinics at an urban pediatric hospital May to December 2021 who completed a previsit tool, codeveloped and tested with patients and families. Prior to each visit, patients/families were invited to share visit priorities, recent histories, and potential diagnostic concerns. We used logistic regression to determine factors associated with patient-reported diagnostic concerns. We conducted chart review on a random subset of visits to review concerns and determine whether patient/family contributions were included in the visit note. RESULTS: Participants provided a similar mean number of contributions regardless of patient race, ethnicity, or language preference. Compared with patients self-identifying as White, those self-identifying as Black (odds ratio [OR]: 1.70; 95% confidence interval [CI]: [1.18, 2.43]) or "other" race (OR: 1.48; 95% CI: [1.08, 2.03]) were more likely to report a diagnostic concern. Participants who preferred a language other than English were more likely to report a diagnostic concern than English-preferring patients (OR: 2.53; 95% CI: [1.78, 3.59]. There were no significant differences in physician-verified diagnostic concerns or in integration of patient contributions into the note based on race, ethnicity, or language preference. CONCLUSION: Participants self-identifying as Black or "other" race, or those who prefer a language other than English were 1.5 to 2.5 times more likely than their counterparts to report potential diagnostic concerns when proactively asked to provide this information prior to a visit. Actively engaging patients and families in the DxP may uncover opportunities to reduce the risk of diagnostic errors and potential safety disparities.


Subject(s)
Ethnicity , Language , Humans , Child , Cross-Sectional Studies
9.
J Clin Med ; 12(21)2023 Oct 27.
Article in English | MEDLINE | ID: mdl-37959266

ABSTRACT

BACKGROUND: There are limited data reporting diagnostic practices, compared to clinical guidelines, for patients with chronic respiratory failure requiring home mechanical ventilation (HMV). There are no data detailing the current use of downloaded physiological monitoring data in day-to-day clinical practice during initiation and follow up of patients on HMV. This survey reports clinicians' practices, with a specific focus on the clinical approaches employed to assess, monitor and manage HMV patients. METHODS: A web-based international survey was open between 1 January and 31 March 2023. RESULTS: In total, 114 clinicians responded; 84% of the clinicians downloaded the internal physiological ventilator data when initiating and maintaining HMV patients, and 99% of the clinicians followed up with patients within 3 months. Adherence, leak and the apnea-hypopnea index were the three highest rated items. Oxygen saturation was used to support a diagnosis of nocturnal hypoventilation and was preferred over measurements of carbon dioxide. Furthermore, 78% of the clinicians reviewed data for the assessment of patient ventilator asynchrony (PVA), although the confidence reported in identifying certain PVAs was reported as unconfident or extremely unconfident. CONCLUSIONS: This survey confirmed that clinical practice varies and often does not follow the current guidelines. Despite PVA being of clinical interest, its clinical relevance was not clear, and further research, education and training are required to improve clinical confidence.

11.
J Sports Sci ; 41(12): 1171-1178, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37733070

ABSTRACT

Research assessing exercise-induced hypohydration on running performance in a temperate environment is scarce. Given the weight-bearing nature of running, the negative effects of hypohydration might be offset by the weight-loss associated with a negative fluid balance. Therefore, this study investigated the effect of exercise-induced hypohydration on running performance in temperate conditions. Seventeen intermittent games players (age 22 ± 1 y; VO2peak 52.5 ± 4.1 mL∙kg-1∙min-1) completed preliminary and familiarisation trials, and two experimental trials consisting of 12 blocks of 6 min of running (65% VO2peak; preload) with 1 min passive rest in-between, followed by a 3 km time trial (TT). During the preload, subjects consumed minimal fluid (60 mL) to induce hypohydration (HYP) or water to replace 95% sweat losses (1622 ± 343 mL; EUH). Body mass loss (EUH -0.5 ± 0.3%; HYP -2.2 ± 0.4%; P < 0.001), and other changes indicative of hypohydration, including increased serum osmolality, heart rate, thirst sensation, and decreased plasma volume (P ≤ 0.022), were apparent in HYP by the end of the preload. TT performance was ~6% slower in HYP (EUH 900 ± 87 s; HYP 955 ± 110 s; P < 0.001). Exercise-induced hypohydration of ~2% body mass impaired 3 km running TT performance in a temperate environment.

12.
J Thorac Dis ; 15(7): 4066-4073, 2023 Jul 31.
Article in English | MEDLINE | ID: mdl-37559648

ABSTRACT

Background: There is a significant burden of sleep disordered breathing (SDB) in patients living with severe and complex obesity undergoing pre-bariatric surgery assessment. This longitudinal observational study evaluated the burden of obesity hypoventilation syndrome (OHS) in this cohort of patients and the therapeutic compliance of patients commenced on positive airway pressure treatment. Methods: All pre-bariatric surgery patients referred to the sleep clinic for review after an abnormal screening study between 2018 and 2022 were included. We collected data on their sleep study results, anthropometrics, co-morbid medical conditions, clinical observations, spirometry and arterial blood gas (ABG). Patients commenced on therapy were followed-up longitudinally and compliance data collected via remote monitoring. Results: A total of 116 patients were included [age: mean ± standard deviation (SD) 48.8±10.8 years; body mass index (BMI) 49.2±8.5 kg/m2; Epworth Sleepiness Scale (ESS) 8.7±5.1 points]. Fifteen patients (12.9% of cohort) were diagnosed with hypercapnic respiratory failure (pH 7.40±0.02; pO2 11.00±1.04 kPa; pCO2 6.15±0.08 kPa). Compared to eucapnic obstructive sleep apnoea (OSA) patients, they were older (51.1 vs. 48.5 years; P=0.311), had a higher BMI (51.5 vs. 48.9 kg/m2; P=0.266), more likely to be female (66.7% vs. 53.5%; P=0.275) and had a higher ESS score (10.4 vs. 8.5 points; P=0.177). On binomial regression analysis insulin dependent diabetes was the only patient characteristic of significance with prevalence increased in patients with OHS (26.7% vs. 8.9%; P=0.042). Forced vital capacity (FVC) and oxygen saturation (SpO2) cut-offs demonstrated high specificity (96.8%) but low sensitivity (13.3%) to diagnosed hypercapnia. Fifty percent of the patients with hypercapnia required bi-level ventilation. On follow-up 44.9% of patients were compliant with therapy (>4 hours usage/night). Conclusions: In minimally symptomatic patients living with severe and complex obesity who have an abnormal overnight oximetry, over 1 in 10 demonstrated chronic respiratory failure. Clinic spirometry and daytime SpO2 excluded those with hypercapnia. Overall adherence to prescribed therapy is low. Screening, appropriate pre-operative optimisation and peri-operative planning are important in preventing complications in this patient cohort.

13.
BMJ Qual Saf ; 2023 Aug 21.
Article in English | MEDLINE | ID: mdl-37604678

ABSTRACT

BACKGROUND: Accurate and timely diagnosis relies on sharing perspectives among team members and avoiding information asymmetries. Patients/Families hold unique diagnostic process (DxP) information, including knowledge of diagnostic safety blindspots-information that patients/families know, but may be invisible to clinicians. To improve information sharing, we co-developed with patients/families an online tool called 'Our Diagnosis (OurDX)'. We aimed to characterise patient/family contributions in OurDX and how they differed between individuals with and without diagnostic concerns. METHOD: We implemented OurDX in two academic organisations serving patients/families living with chronic conditions in three subspecialty clinics and one primary care clinic. Prior to each visit, patients/families were invited to contribute visit priorities, recent histories and potential diagnostic concerns. Responses were available in the electronic health record and could be incorporated by clinicians into visit notes. We randomly sampled OurDX reports with and without diagnostic concerns for chart review and used inductive and deductive qualitative analysis to assess patient/family contributions. RESULTS: 7075 (39%) OurDX reports were submitted at 18 129 paediatric subspecialty clinic visits and 460 (65%) reports were submitted among 706 eligible adult primary care visits. Qualitative analysis of OurDX reports in the chart review sample (n=450) revealed that participants contributed DxP information across 10 categories, most commonly: clinical symptoms/medical history (82%), tests/referrals (54%) and diagnosis/next steps (51%). Participants with diagnostic concerns were more likely to contribute information on DxP risks including access barriers, recent visits for the same problem, problems with tests/referrals or care coordination and communication breakdowns, some of which may represent diagnostic blindspots. CONCLUSION: Partnering with patients and families living with chronic conditions through OurDX may help clinicians gain a broader perspective of the DxP, including unique information to coproduce diagnostic safety.

14.
ERJ Open Res ; 9(4)2023 Jul.
Article in English | MEDLINE | ID: mdl-37650090

ABSTRACT

Respiratory waveforms can be reduced to simple metrics, such as rate, but this may miss information about waveform shape and whole breathing pattern. A novel analysis method quantifying the whole waveform shape identifies AECOPD earlier. https://bit.ly/3M6uIEB.

15.
BMJ Open Respir Res ; 10(1)2023 07.
Article in English | MEDLINE | ID: mdl-37495260

ABSTRACT

OBJECTIVE: Identify prevalence of self-reported swallow, communication, voice and cognitive compromise following hospitalisation for COVID-19. DESIGN: Multicentre prospective observational cohort study using questionnaire data at visit 1 (2-7 months post discharge) and visit 2 (10-14 months post discharge) from hospitalised patients in the UK. Lasso logistic regression analysis was undertaken to identify associations. SETTING: 64 UK acute hospital Trusts. PARTICIPANTS: Adults aged >18 years, discharged from an admissions unit or ward at a UK hospital with COVID-19. MAIN OUTCOME MEASURES: Self-reported swallow, communication, voice and cognitive compromise. RESULTS: Compromised swallowing post intensive care unit (post-ICU) admission was reported in 20% (188/955); 60% with swallow problems received invasive mechanical ventilation and were more likely to have undergone proning (p=0.039). Voice problems were reported in 34% (319/946) post-ICU admission who were more likely to have received invasive (p<0.001) or non-invasive ventilation (p=0.001) and to have been proned (p<0.001). Communication compromise was reported in 23% (527/2275) univariable analysis identified associations with younger age (p<0.001), female sex (p<0.001), social deprivation (p<0.001) and being a healthcare worker (p=0.010). Cognitive issues were reported by 70% (1598/2275), consistent at both visits, at visit 1 respondents were more likely to have higher baseline comorbidities and at visit 2 were associated with greater social deprivation (p<0.001). CONCLUSION: Swallow, communication, voice and cognitive problems were prevalent post hospitalisation for COVID-19, alongside whole system compromise including reduced mobility and overall health scores. Research and testing of rehabilitation interventions are required at pace to explore these issues.


Subject(s)
COVID-19 , Adult , Female , Humans , Aftercare , Cognition , Communication , COVID-19/epidemiology , Hospitalization , Patient Discharge , Prevalence , Prospective Studies , Male
17.
Intensive Crit Care Nurs ; 79: 103482, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37451085

ABSTRACT

OBJECTIVE: To develop an expert-informed (including end users) recovery goal menu for adults recovering from critical illness applicable to the community/home setting. RESEARCH METHODOLOGY/DESIGN: Stage 1 Item generation: iterative development of domains, sub-domains, and goals in consultation with former intensive care patients, family members and expert clinicians. Stage 2 Content validity assessment: cognitive interviews and the content validity index. SETTING: Virtual consultation meetings facilitated by the research team at King's College London and Guy's and St Thomas' NHS Foundation Trust. MAIN OUTCOME MEASURES: Content validity as assessed by: the Item-Content Validity Index (I-CVI), Scale Level-Content Validity Index/Universal Agreement (S-CVI/UA) score, the Scale Level-Content Validity Index/Average (S-CVI/Ave) score and Average Content Validity Ratio (CVR). RESULTS: Item generation resulted in a goal menu comprising 4 domains, 22 sub-domains and 95 goals assigned as follows: Self-care: 9 sub-domains with 37 goals, Productivity: 7 sub-domains with 13 goals, Leisure: 3 sub-domains with 25 goals, and Person domain 3 sub-domains with 20 goals. Cognitive interviews resulted in addition of 79 goals and modification of 7, addition of 4 new sub-domains and modification of 4, thus resulting in 4 domains, 26 sub-domains with a total of 174 goals. Twenty-four sub-domains (169 goals) were deemed relevant with Item-Content Validity Index (I-CVI) scores ranging from 0.72 to 1. Two sub-domains (5 goals) did not meet the 0.7 cut-off and were removed. The Scale Level-Content Validity Index/Universal Agreement (S-CVI/UA) score was 0.46; the Scale Level-Content Validity Index/Average (S-CVI/Ave) 0.91. Average Content Validity Ratio (CVR) was 0.93. CONCLUSION: An expert informed recovery goal menu for former intensive care patients has been developed with excellent content validity. The final goal menu comprises 169 goals within 24 sub-domains grouped under 4 domains. IMPLICATIONS FOR CLINICAL PRACTICE: This menu will help patients to set goals and increase our understanding of how individuals recover from critical illness.


Subject(s)
Goals , Nursing Care , Adult , Humans , Critical Illness , Self Care , Reproducibility of Results
18.
JAMA Netw Open ; 6(7): e2324369, 2023 07 03.
Article in English | MEDLINE | ID: mdl-37466939

ABSTRACT

Importance: Acute neurological involvement occurs in some patients with multisystem inflammatory syndrome in children (MIS-C), but few data report neurological and psychological sequelae, and no investigations include direct assessments of cognitive function 6 to 12 months after discharge. Objective: To characterize neurological, psychological, and quality of life sequelae after MIS-C. Design, Setting, and Participants: This cross-sectional cohort study was conducted in the US and Canada. Participants included children with MIS-C diagnosed from November 2020 through November 2021, 6 to 12 months after hospital discharge, and their sibling or community controls, when available. Data analysis was performed from August 2022 to May 2023. Exposure: Diagnosis of MIS-C. Main Outcomes and Measures: A central study site remotely administered a onetime neurological examination and in-depth neuropsychological assessment including measures of cognition, behavior, quality of life, and daily function. Generalized estimating equations, accounting for matching, assessed for group differences. Results: Sixty-four patients with MIS-C (mean [SD] age, 11.5 [3.9] years; 20 girls [31%]) and 44 control participants (mean [SD] age, 12.6 [3.7] years; 20 girls [45%]) were enrolled. The MIS-C group exhibited abnormalities on neurological examination more frequently than controls (15 of 61 children [25%] vs 3 of 43 children [7%]; odds ratio, 4.7; 95% CI, 1.3-16.7). Although the 2 groups performed similarly on most cognitive measures, the MIS-C group scored lower on the National Institutes of Health Cognition Toolbox List Sort Working Memory Test, a measure of executive functioning (mean [SD] scores, 96.1 [14.3] vs 103.1 [10.5]). Parents reported worse psychological outcomes in cases compared with controls, particularly higher scores for depression symptoms (mean [SD] scores, 52.6 [13.1] vs 47.8 [9.4]) and somatization (mean [SD] scores, 55.5 [15.5] vs 47.0 [7.6]). Self-reported (mean [SD] scores, 79.6 [13.1] vs 85.5 [12.3]) and parent-reported (mean [SD] scores, 80.3 [15.5] vs 88.6 [13.0]) quality of life scores were also lower in cases than controls. Conclusions and Relevance: In this cohort study, compared with contemporaneous sibling or community controls, patients with MIS-C had more abnormal neurologic examinations, worse working memory scores, more somatization and depression symptoms, and lower quality of life 6 to 12 months after hospital discharge. Although these findings need to be confirmed in larger studies, enhanced monitoring may be warranted for early identification and treatment of neurological and psychological symptoms.


Subject(s)
Connective Tissue Diseases , Quality of Life , United States , Child , Female , Humans , Cross-Sectional Studies , Cohort Studies , Systemic Inflammatory Response Syndrome , Disease Progression
19.
J Clin Epidemiol ; 161: 94-103, 2023 09.
Article in English | MEDLINE | ID: mdl-37385305

ABSTRACT

OBJECTIVES: Studies from the first waves of the coronavirus disease 2019 (COVID-19) pandemic suggest that individuals from minority ethnicities are at an increased risk of worse outcomes. Concerns exist that this relationship is potentially driven by bias from analyzing hospitalized patients only. We investigate this relationship and the possible presence of bias. STUDY DESIGN AND SETTING: Using data from South London hospitals across two COVID-19 waves (February 2020 - May 2021), the relationship between ethnicity and COVID-19 outcomes was examined using regression models. Three iterations of each model were completed: 1) an unadjusted analysis, 2) adjusting for covariates (medical history and deprivation), and 3) adjusting for covariates and bias induced by conditioning on hospitalization. RESULTS: Among 3,133 patients, those who were Asian had a two-fold increased risk of death during the hospital stay that was consistent across the two COVID-19 waves and was not affected by correcting for conditioning on hospitalization. However, wave-specific effects demonstrate significant differences between ethnic groups until bias from using a hospitalized cohort was corrected for. CONCLUSION: Worsened COVID-19 outcomes in minority ethnicities may be minimized by correcting for bias induced by conditioning on hospitalization. Consideration of this bias should be a key component of study design.


Subject(s)
COVID-19 , Humans , SARS-CoV-2 , Ethnicity , Hospitalization , Hospitals
20.
Eur Respir Rev ; 32(168)2023 Jun 30.
Article in English | MEDLINE | ID: mdl-37137507

ABSTRACT

Home mechanical ventilation (HMV) is a treatment for chronic respiratory failure that has shown clinical and cost effectiveness in patients with underlying COPD, obesity-related respiratory failure and neuromuscular disease (NMD). By treating chronic respiratory failure with adequate adherence to HMV, improvement in patient-reported outcomes including health-related quality of life (HRQoL) have been evaluated using general and disease-specific quantitative, semi-qualitative and qualitative methods. However, the treatment response in terms of trajectory of change in HRQoL is not uniform across the restrictive and obstructive disease groups. In this review, the effect of HMV on HRQoL across the domains of symptom perception, physical wellbeing, mental wellbeing, anxiety, depression, self-efficacy and sleep quality in stable and post-acute COPD, rapidly progressive NMD (such as amyotrophic lateral sclerosis), inherited NMD (including Duchenne muscular dystrophy) and obesity-related respiratory failure will be discussed.


Subject(s)
Home Care Services , Neuromuscular Diseases , Pulmonary Disease, Chronic Obstructive , Respiratory Insufficiency , Humans , Respiration, Artificial/adverse effects , Quality of Life , Respiratory Insufficiency/diagnosis , Respiratory Insufficiency/etiology , Respiratory Insufficiency/therapy , Neuromuscular Diseases/complications , Neuromuscular Diseases/diagnosis , Neuromuscular Diseases/therapy , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/therapy
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