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1.
Sleep ; 2024 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-38531670

RESUMO

STUDY OBJECTIVES: Recent studies suggest sleepy patients with OSA are at higher risk for incident cardiovascular disease. This study assessed cardiac autonomic function in sleepy versus non-sleepy patients with obstructive sleep apnoea (OSA) using heart rate variability (HRV) analysis. We hypothesised that HRV profiles of sleepy patients would indicate higher cardiovascular risk. METHODS: Electrocardiograms (ECG) derived from polysomnograms (PSG) collected by the Sydney Sleep Biobank were used to study HRV in groups of sleepy (ESS≥10) and non-sleepy OSA patients (ESS<10). HRV parameters were averaged across available ECG signal during N2 sleep. RESULTS: A total of 421 patients were evaluated, with mean age of 54 (14) years, body mass index (BMI) of 33 (9) kg/m2, apnoea hypopnoea index (AHI) of 21 (28) events/h and, 66% male. The sleepy group consisted of 119 patients, and the non-sleepy group 302 patients. Sleepy patients exhibited lower HRV values for: root mean square successive difference (RMSSD, p= 0.028); total power (TP, p= 0.031); absolute low frequency (LF, p= 0.045); and high frequency (HF, p= 0.010) power compared to Non-Sleepy patients. Sleepy patients with moderate to severe OSA exhibited lower HRV values for: (RMSSD, p= 0.045; TP, p= 0.052) ; absolute LF (p= 0.051); and HF power (p= 0.025). There were no differences in other time and frequency domain HRV markers. CONCLUSIONS: This study shows a trend towards parasympathetic withdrawal in sleepy OSA patients, particularly in moderate to severe cases, lending mechanistic support to the link between the sleepy phenotype and CVD risk in OSA.

2.
Sleep Med ; 116: 62-70, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38430792

RESUMO

INTRODUCTION: Understanding how persons with narcolepsy conceptualize symptoms, daily impact and illness experience is key to facilitating dialogue between patients and healthcare professionals. These concepts are usually explored from the perspective of healthcare professionals/researchers and rarely from the perspective of those with narcolepsy. METHODS: 127 self-reported persons with narcolepsy were recruited from an Australian patient support group. A short demographic survey was completed. All agreed to participate in a subsequent 1:1 semi-structured interview. Saturation was reached after 24 interviews (mean age = 33 years (SD 11) with 44% reporting cataplexy). A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Participants perceived physical fatigue, sleepiness, and two separate experiences of 'falling asleep/sleep attacks' as distinct symptoms rather than a multidimensional construct (i.e. excessive daytime sleepiness). We also identified two experiences of cataplexy, one triggered by acute emotion and another by a stressor. Participants determined their narcolepsy to be 'well-managed' by the level of functional impairment rather than the frequency of any symptom. Almost all participants described experiencing anticipated stigma and internalized or 'self-' stigma, likely stemming from societal devaluation of sleep and the conflation of sleepiness with laziness. CONCLUSION: Descriptions of common symptoms often differed between participants and the existing literature. These differences likely impact patient-physician communication, with both parties utilizing the same terminology to communicate different concepts. The characterization of stigma in narcolepsy presents opportunities for future research exploring the impact and possible development of interventions to reduce the substantial psychological comorbidity in persons with narcolepsy.


Assuntos
Cataplexia , Distúrbios do Sono por Sonolência Excessiva , Narcolepsia , Humanos , Adulto , Cataplexia/diagnóstico , Sonolência , Austrália , Narcolepsia/diagnóstico , Distúrbios do Sono por Sonolência Excessiva/diagnóstico
3.
J Clin Sleep Med ; 2024 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-38169428

RESUMO

STUDY OBJECTIVES: Parents/carers of a child with narcolepsy (CwN) are often required to become an expert in narcolepsy and navigate healthcare, education, and welfare systems on behalf of their child. Managing pediatric narcolepsy is complex and challenges the child and the entire family, yet few studies have explored carers' experiences. METHODS: Twenty mothers (50% had a CwN <18 years at the time of interview; 85% NT1) participated in a 1:1 semi-structured interview. Participation from fathers was sought; however, none were recruited. A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Mothers perceived that most people misunderstood the whole-person impact of narcolepsy, including their child's peers, teachers, and support networks. Narcolepsy had a substantial psychological impact on both the child and the whole family, yet was largely unaddressed by healthcare professionals, leaving mothers unsure of where to turn for help. Most parents described negative experiences with their child's specialist, often perceiving the specialists to lack knowledge specific to narcolepsy. Information about illness trajectory and support services was limited or inaccessible, fuelling many mothers' hopes and fears for their child's future. Mothers also frequently described feelings of abandonment by the healthcare system. CONCLUSIONS: Our results contextualize the whole-person impact of narcolepsy from the perspective of parents and carers, highlighting the need for proactive inclusion of parents/carers in developing healthcare policy and practice. It calls for developing tools and resources to capture 'well-managed' narcolepsy from the perspective of parents/carers for use in research and clinical practice.

4.
Sleep Breath ; 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38051468

RESUMO

PURPOSE: To assess changes in sleep-related symptoms in patients with breast cancer, endometrial cancer and melanoma previously examined for sleep-related symptoms and the presence of PSG (polysomnography)-determined OSA, ≥ 3 years post-treatment; and to evaluate how CPAP treatment affects sleep-related symptoms in patients previously diagnosed with OSA. METHODS: Patients initially recruited from breast cancer, endometrial cancer, and melanoma follow-up clinics at Westmead Hospital (Sydney, Australia) participated in this questionnaire-based study. Demographic and change in cancer status data were collected at follow-up. Patients completed the Pittsburgh Sleep Quality Index [poor sleep quality, PSQITOTAL ≥ 5au], Insomnia Severity Index, Epworth Sleepiness Scale and Functional Outcomes of Sleep Questionnaire; with ΔPSQITOTAL ≥ 3au indicating a clinically meaningful change in sleep quality over follow-up. PSG-determined OSA was confirmed using the apnoea-hypopnoea index. CPAP compliance was determined via self-report (CPAP compliant, CPAP; not compliant, non-CPAP). Logistic regression models determined if changes in cancer status, AHI, cancer subgroup or CPAP treatment was predictive of ΔPSQITOTAL ≥ 3 au and p < 0.05 indicated statistical significance. RESULTS: The 60 patients recruited had breast cancer (n = 22), endometrial cancer (n = 15), and melanoma (n = 23). Cancer subgroups were similarly aged, and all had median follow-up PSQITOTAL scores ≥ 5au; breast cancer patients scoring the highest (p < 0.05). The CPAP group had significantly reduced PSQITOTAL scores (p = 0.02) at follow-up, unlike the non-CPAP group. Cancer subgroups had similar median ISITOTAL, ESSTOTAL and FOSQ-10TOTAL scores at follow-up, regardless of CPAP treatment. There were no significant predictors of ΔPSQITOTAL ≥ 3 au at follow-up. CONCLUSION: Sleep-related symptoms persist in patients with cancer ≥ 3 years after treatment, although these symptoms improve with CPAP. Future studies should evaluate how CPAP affects survival outcomes in cancer patients with comorbid OSA.

5.
J Appl Physiol (1985) ; 135(5): 1012-1022, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37767555

RESUMO

Increased intrapulmonary shunt (QS/Qt) and alveolar dead space (VD/VT) are present in early recovery from 2019 Novel Coronavirus (COVID-19). We hypothesized patients recovering from severe critical acute illness (NIH category 3-5) would have greater and longer lasting increased QS/Qt and VD/VT than patients with mild-moderate acute illness (NIH 1-2). Fifty-nine unvaccinated patients (33 males, aged 52 [38-61] yr, body mass index [BMI] 28.8 [25.3-33.6] kg/m2; median [IQR], 44 previous mild-moderate COVID-19, and 15 severe-critical disease) were studied 15-403 days postacute severe acute respiratory syndrome coronavirus infection. Breathing ambient air, steady-state mean alveolar Pco2, and Po2 were recorded simultaneously with arterial Po2/Pco2 yielding aAPco2, AaPo2, and from these, QS/Qt%, VD/VT%, and relative alveolar ventilation (40 mmHg/[Formula: see text], VArel) were calculated. Median [Formula: see text] was 39.4 [35.6-41.1] mmHg, [Formula: see text] 92.3 [87.1-98.2] mmHg; [Formula: see text] 32.8 [28.6-35.3] mmHg, [Formula: see text] 112.9 [109.4-117.0] mmHg, AaPo2 18.8 [12.6-26.8] mmHg, aAPco2 5.9 [4.3-8.0] mmHg, QS/Qt 4.3 [2.1-5.9] %, and VD/VT16.6 [12.6-24.4]%. Only 14% of patients had normal QS/Qt and VD/VT; 1% increased QS/Qt but normal VD/VT; 49% normal QS/Qt and elevated VD/VT; 36% both abnormal QS/Qt and VD/VT. Previous severe critical COVID-19 predicted increased QS/Qt (2.69 [0.82-4.57]% per category severity [95% CI], P < 0.01), but not VD/VT. Increasing age weakly predicted increased VD/VT (1.6 [0.1-3.2]% per decade, P < 0.04). Time since infection, BMI, and comorbidities were not predictors (all P > 0.11). VArel was increased in most patients. In our population, recovery from COVID-19 was associated with increased QS/Qt in 37% of patients, increased VD/VT in 86%, and increased alveolar ventilation up to ∼13 mo postinfection. NIH severity predicted QS/Qt but not elevated VD/VT. Increased VD/VT suggests pulmonary microvascular pathology persists post-COVID-19 in most patients.NEW & NOTEWORTHY Using novel methodology quantifying intrapulmonary shunt and alveolar dead space in COVID-19 patients up to 403 days after acute illness, 37% had increased intrapulmonary shunt and 86% had elevated alveolar dead space likely due to independent pathology. Elevated shunt was partially related to severe acute illness, and increased alveolar dead space was weakly related to increasing age. Ventilation was increased in the majority of patients regardless of previous disease severity. These results demonstrate persisting gas exchange abnormalities after recovery.


Assuntos
COVID-19 , Espaço Morto Respiratório , Masculino , Humanos , Doença Aguda , Pulmão , Respiração
6.
J Cardiovasc Dev Dis ; 10(8)2023 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-37623362

RESUMO

Coronavirus (COVID-19) infections have spread rapidly worldwide and posed an immense public health problem. COVID-19 infection can affect the cardiovascular system both acutely and in patients followed up some period after COVID-19 infection. The aim of this study was to evaluate left ventricular (LV) and right ventricular (RV) function by echocardiography in COVID-19 recovered patients (hospitalized and non-hospitalized). Forty-two patients who recovered from COVID-19 but had ongoing symptoms were included in this retrospective observational cross-sectional study. Patients were followed-up at a median time of 112 days from confirmed COVID-19 diagnosis and a comprehensive echocardiogram was performed. COVID-19 patients were age- and sex-matched to healthy controls. Traditional TTE parameters and advanced echocardiographic parameters including two-dimensional LV global longitudinal strain (GLS) and RV free wall strain (FWS) were measured. LV volumes and LV ejection fraction were similar in COVID-19 patients and controls; however, LV GLS was significantly worse in the COVID-19 group (p = 0.002). Similarly, RV volumes and traditional RV function parameters were similar, but RV FWS (p = 0.009) and RV global strain (p = 0.015) were reduced. Alterations in LV and RV strain were observed in both hospitalized and non-hospitalized patients. In the subset of COVID-19 patients without any co-morbidities (n = 30), LV GLS remained reduced compared to controls. According to multivariate analysis, COVID-19 infection was the only independent determinant of reduced LV GLS (p = 0.012), while COVID-19 infection, diastolic blood pressure, and RV fractional area change were determinants of RV FWS. In this observational study, prior COVID-19 infection demonstrated LV dysfunction in patients with persistent symptoms. Abnormal LV strain was evident in both hospitalized and non-hospitalized patients, suggesting that these changes are independent of the severity of COVID-19 infection at presentation. The use of LV GLS in COVID-19 patients could have potential clinical utility to support the indication for cardiac magnetic resonance imaging in patients with possible COVID-19 related myocarditis. Future longitudinal studies are needed to evaluate its correlation with adverse cardiovascular events.

7.
PLoS One ; 18(1): e0279306, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36626381

RESUMO

INTRODUCTION: Obstructive sleep apnea (OSA) may increase stroke risk; retinal arteriolar (central retinal arteriolar equivalent, CRAE) diameter narrowing and/or retinal venular (central retinal venule equivalent, CRVE) widening may predict stroke. We examined relationships between sleep disordered breathing (SDB) and CRAE and CRVE and in a diabetes-free sleep clinic cohort. METHODS: Patients for SDB assessment were recruited (Main Group, n = 264, age: 58.5 ± 8.9 yrs [mean ± SD]; males: 141) for in-laboratory polysomnography (standard metrics, eg apnea hypopnea index, AHI) and retinal photographs (evening and morning). A more severe SDB sub-group (n = 85) entered a 12-month cardiovascular risk factor minimisation (hypertension/hypercholesterolemia control; RFM) and continuous positive airway pressure (CPAP) intervention (RFM/CPAP Sub-Group); successfully completed by n = 66 (AHI = 32.4 [22.1-45.3] events/hour, median[IQR]). Univariate (Spearman's correlation, t-test) and multiple linear regression models examined non-SDB and SDB associations with CRAE and CRVE measures. RESULTS: Main Group: Evening CRAE predictors were: systolic blood pressure (0.18µm decrease per mmHg, p = 0.001), age (2.47µm decrease per decade, p = 0.012), Caucasian ethnicity (4.45 µm versus non-Caucasian, p = 0.011), height (0.24 µm decrease per cm increase, p = 0.005) and smoking history (3.08 µm increase, p = 0.052). Evening CRVE predictors were: Caucasian ethnicity (11.52 µm decrease versus non-Caucasian, p>0.001), diastolic blood pressure (0.34 µm increase in CRVE per mmHg, p = 0.001), hypertension history (6.5 µm decrease, p = 0.005), and smoking history (4.6 µm increase, p = 0.034). No SDB metric (all p>0.08) predicted CRAE or CRVE measures. RFM/CPAP Sub-Group: A one-unit increase in ln(AHI+1) was associated with a 0.046µm increase in CRAE (n = 85; p = 0.029). Mean evening CRAE and CRVE values did not change across the intervention (n = 66), but evening CRVE decreased ~6.0 µm for individuals with AHI >30 events/hr. CONCLUSION: No major SDB associations with CRAE or CRVE were identified, although the RFM/CPAP intervention reduced evening CRVE for severe OSA patients. Implications for cerebro-vascular disease risk remain uncertain. TRIAL REGISTRATION: The protocol was registered with the Australian New Zealand Clinical Trials Registry (Trial Id: ACTRN12620000694910).


Assuntos
Hipertensão , Síndromes da Apneia do Sono , Apneia Obstrutiva do Sono , Acidente Vascular Cerebral , Idoso , Humanos , Masculino , Pessoa de Meia-Idade , Austrália , Sono , Apneia Obstrutiva do Sono/terapia
9.
Sleep Breath ; 27(3): 861-868, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35802312

RESUMO

STUDY OBJECTIVES: There has been long-standing interest in potential links between obstructive sleep apnea (OSA) and eye disease. This study used retinal photography to identify undiagnosed retinal abnormalities in a cohort of sleep clinic patients referred for polysomnography (PSG) and then determined associations with PSG-quantified sleep-disordered breathing (SDB) severity. METHODS: Retinal photographs (n = 396 patients) were taken of each eye prior to polysomnography and graded according to validated, standardized, grading scales. SDB was quantified via in-laboratory polysomnography (PSG; n = 385) using standard metrics. A questionnaire (n = 259) documented patient-identified pre-existing eye disease. Within-group prevalence rates were calculated on a per patient basis. Data were analyzed using multivariate logistic regression models to determine independent predictors for retinal abnormalities. P < 0.05 was considered significant. RESULTS: Main findings were (1) 76% of patients reported no pre-existing "eye problems"; (2) however, 93% of patients had at least one undiagnosed retinal photograph-identified abnormality; (3) most common abnormalities were drusen (72%) and peripapillary atrophy (PPA; 47%); (4) age was the most common risk factor; (5) diabetes history was an expected risk factor for retinopathy; (6) patients with very severe levels of SDB (apnea hypopnea index ≥ 50 events/h) were nearly three times more likely to have PPA. CONCLUSION: Retinal photography in sleep clinic settings will likely detect a range of undiagnosed retinal abnormalities, most related to patient demographics and comorbidities and, except for PPA, not associated with SDB. PPA may be indicative of glaucoma, and any association with severe SDB should be confirmed in larger prospective studies.


Assuntos
Síndromes da Apneia do Sono , Apneia Obstrutiva do Sono , Humanos , Polissonografia , Estudos Prospectivos , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/epidemiologia , Síndromes da Apneia do Sono/complicações , Sono , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/epidemiologia , Apneia Obstrutiva do Sono/complicações
10.
Eur Respir J ; 61(1)2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36137595

RESUMO

BACKGROUND: Pathological evidence suggests that coronavirus disease 2019 (COVID-19) pulmonary infection involves both alveolar damage (causing shunt) and diffuse microvascular thrombus formation (causing alveolar dead space). We propose that measuring respiratory gas exchange enables detection and quantification of these abnormalities. We aimed to measure shunt and alveolar dead space in moderate COVID-19 during acute illness and recovery. METHODS: We studied 30 patients (22 males; mean±sd age 49.9±13.5 years) 3-15 days from symptom onset and again during recovery, 55±10 days later (n=17). Arterial blood (breathing ambient air) was collected while exhaled oxygen and carbon dioxide concentrations were measured, yielding alveolar-arterial differences for each gas (P A-aO2 and P a-ACO2 , respectively) from which shunt and alveolar dead space were computed. RESULTS: For acute COVID-19 patients, group mean (range) for P A-aO2 was 41.4 (-3.5-69.3) mmHg and for P a-ACO2 was 6.0 (-2.3-13.4) mmHg. Both shunt (% cardiac output) at 10.4% (0-22.0%) and alveolar dead space (% tidal volume) at 14.9% (0-32.3%) were elevated (normal: <5% and <10%, respectively), but not correlated (p=0.27). At recovery, shunt was 2.4% (0-6.1%) and alveolar dead space was 8.5% (0-22.4%) (both p<0.05 versus acute). Shunt was marginally elevated for two patients; however, five patients (30%) had elevated alveolar dead space. CONCLUSIONS: We speculate impaired pulmonary gas exchange in early COVID-19 pneumonitis arises from two concurrent, independent and variable processes (alveolar filling and pulmonary vascular obstruction). For most patients these resolve within weeks; however, high alveolar dead space in ∼30% of recovered patients suggests persistent pulmonary vascular pathology.


Assuntos
COVID-19 , Pneumonia , Transtornos Respiratórios , Masculino , Humanos , Adulto , Pessoa de Meia-Idade , Espaço Morto Respiratório , Volume de Ventilação Pulmonar , Oxigênio , Troca Gasosa Pulmonar , Dióxido de Carbono
11.
Cancer Rep (Hoboken) ; 6(3): e1740, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36512174

RESUMO

BACKGROUND AND AIMS: For cancer patients, comorbid obstructive sleep apnea (OSA) poses additional risk to their surgical/anaesthetic outcomes, quality of life, and survival. However, OSA screening is not well-established in oncology settings. We tested two screening tools (STOP-Bang questionnaire [SBQ] and the at-home monitoring device, ApneaLink™Air), for predicting polysomnography (PSG) confirmed OSA in post-treatment cancer patients. METHODS: Breast (n = 56), endometrial (n = 37) and melanoma patients (n = 50) were recruited from follow-up clinics at Westmead Hospital (Sydney, Australia). All underwent overnight PSG, 137 completed SBQ, and 99 completed ApneaLink™Air. Positive (PPV) and negative (NPV) predictive values for PSG-determined moderate-to-severe OSA and severe OSA, were calculated using an SBQ threshold ≥3 au and ApneaLink™Air apnoea-hypopnea index thresholds of ≥10, ≥15 and ≥30 events/h. RESULTS: Both SBQ and ApneaLink™Air had high NPVs (92.7% and 85.2%-95.6% respectively) for severe OSA, but NPVs were lower for moderate-to-severe OSA (69.1% and 59.1%-75.5%, respectively). PPV for both tools were relatively low (all <73%). Combining both tools did not improve screening performance. CONCLUSIONS: These screening tools may help identify cancer patients without severe OSA, but both are limited in identifying those with moderate-to-severe or severe OSA. PSG remains optimal for adequately identifying and managing comorbid OSA in cancer patients.


Assuntos
Melanoma , Apneia Obstrutiva do Sono , Humanos , Programas de Rastreamento , Qualidade de Vida , Detecção Precoce de Câncer , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/epidemiologia , Apneia Obstrutiva do Sono/terapia
12.
Intern Med J ; 53(2): 194-201, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36369676

RESUMO

BACKGROUND: Diabetes has been recognised as a major risk factor for COVID-19 mortality and hospital complications in earlier studies. AIMS: To examine the characteristics of hospitalised COVID-19 patients with diabetes and the impact of diabetes and hyperglycaemia on hospital outcomes. METHODS: This was a retrospective cohort study. Admission glucose levels, HbA1c, diabetes status and hospital outcomes were determined for subjects admitted from June to November 2021 by matching a pathology data set, a clinical data set and the hospital administrative database. The outcomes of interest were death, intensive care unit (ICU) admission and length of stay (LOS). RESULTS: There were 1515 individuals admitted with COVID-19 with 49 deaths (3.2%) and 205 (13.5%) ICU admissions. The median length of hospital stay was 3.7 days. Three hundred and ten patients (20%) had diabetes, with 46 (15%) newly diagnosed. Patients with diabetes had a higher mortality than patients who did not have diabetes (8% vs 2%, P < 0.001), were more likely to be admitted to ICU (20% vs 12%, P = 0.001) and have longer median LOS stay (6.6 (interquartile range (IQR) 2.9-12.5) vs 2.9 (IQR 0.5-7.1) days, P < 0.001). In multivariate models, neither diabetes nor admission glucose predicted death. Admission glucose level but not diabetes was an independent predictor of ICU admission and LOS. CONCLUSIONS: There is a high prevalence of diabetes among patients hospitalised with COVID-19, with worse outcomes. In contrast to previous studies, the association of diabetes with mortality was not significant when adjusted for other variables. This is possibly related to the benefits of vaccination and current medical and ICU interventions.


Assuntos
COVID-19 , Diabetes Mellitus , Hiperglicemia , Humanos , Hiperglicemia/epidemiologia , COVID-19/epidemiologia , Estudos Retrospectivos , Diabetes Mellitus/epidemiologia , Tempo de Internação , Unidades de Terapia Intensiva , Glucose , Mortalidade Hospitalar
13.
Sleep ; 45(10)2022 10 10.
Artigo em Inglês | MEDLINE | ID: mdl-35797589

RESUMO

STUDY OBJECTIVES: To systematically determine subjective and objective outcome measures used to measure the efficacy of narcolepsy interventions in randomized controlled trials (RCTs) in adults and children and assess psychometric properties of patient-reported outcome measures (PROMs) used. METHODS: We searched bibliographical databases and clinical trial registries for narcolepsy RCTs and extracted objective and subjective outcome measures. If PROMs were used, we searched for psychometric studies conducted in a narcolepsy population using bibliographical databases and appraised using Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. RESULTS: In total, 80 different outcome measures were used across 100 RCTs. Epworth Sleepiness Scale (ESS) (n = 49) and Maintenance of Wakefulness Test (n = 47) were the most frequently used outcome measures. We found 19 validation studies of 10 PROMs in narcolepsy populations. There was limited evidence for validity or responsiveness of the ESS; yet sufficient reliability (pooled ICC: 0.81-0.87). Narcolepsy Severity Scale (NSS) had sufficient reliability (pooled ICC: 0.71-0.92) and both adult and pediatric versions had sufficient discriminant validity (treated/untreated). Content validity was only evaluated in pediatric populations for ESS-CHAD and NSS-P and rated inconclusive. Quality of evidence of the psychometric studies for all scales ranged from very low to low. CONCLUSIONS: Although recognized by regulatory bodies and widely used as primary outcome measures in trials, there is surprisingly little evidence for the validity, reliability, and responsiveness of PROMs frequently used to assess treatment efficacy in narcolepsy. The field needs to establish patient-centered minimal clinically important differences for the PROMs used in these trials.


Assuntos
Narcolepsia , Adulto , Criança , Humanos , Narcolepsia/diagnóstico , Narcolepsia/terapia , Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Reprodutibilidade dos Testes , Vigília
14.
J Sleep Res ; 31(5): e13588, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35470503

RESUMO

Specific sleep disorders have been linked to disease progression in different cancers. We hypothesised sleep symptom clusters would differ between cancer types. The aim of this study was to compare sleep symptom clusters in post-treatment melanoma, breast and endometrial cancer patients. Data were collected from 124 breast cancer patients (1 male, 60 ± 15 years, 28.1 ± 6.6 kg/m2 ), 82 endometrial cancer patients (64.0 ± 12.5 years, 33.5 ± 10.4 kg/m2 ) and 112 melanoma patients (59 male, 65.0 ± 18.0 years, 29.1 ± 6.6 kg/m2 ). All patients completed validated questionnaires to assess sleep symptoms, including the Epworth Sleepiness Scale (ESS), Pittsburgh Sleep Quality Index (PSQI), Insomnia Severity Index (ISI), and Functional Outcomes of Sleep Questionnaire-10 (FOSQ-10). Snoring, tiredness, observed apneas, age, BMI, and gender data were also collected. Binary values (PSQI, ISI, FOSQ), or continuous variables for sleepiness (ESS) and perceived sleep quality (PSQI), were created and sleep symptom clusters were identified and compared across cancer cohorts. Four distinct sleep symptom clusters were identified: minimally symptomatic (n = 152, 47.7%); insomnia-predominant (n = 87, 24.9%); very sleepy with upper airway symptoms (n = 51, 16.3%), and severely symptomatic with severe dysfunction (n = 34, 11.1%). Breast cancer patients were significantly more likely to be in the insomnia predominant or severely symptomatic with severe dysfunction clusters, whereas melanoma patients were more likely to be minimally symptomatic or sleepy with upper airway symptoms (p <0.0001). Endometrial cancer patients were equally distributed across symptom clusters. Sleep symptom clusters vary across cancer patients. A more personalised approach to the management of sleep-related symptoms in these patients may improve the long term quality of life and survival.


Assuntos
Neoplasias da Mama , Neoplasias do Endométrio , Melanoma , Distúrbios do Início e da Manutenção do Sono , Análise por Conglomerados , Feminino , Humanos , Masculino , Melanoma/complicações , Qualidade de Vida , Sono , Sonolência , Inquéritos e Questionários , Síndrome
15.
Aust Health Rev ; 46(2): 233-243, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35380105

RESUMO

Objective Parliamentary inquiries into health-related issues empower everyday Australians to contribute to the development and reform of health policy. We explored how patient and family/carers concerns are translated by this process, using a less well-known disease, narcolepsy, as an example. Methods Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n = 13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded and abstracted into emergent themes before being evaluated against the final policy recommendations. Results Although patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), the policy recommendations in the report focused mainly on issues of healthcare infrastructure, funding and engagement. Our analysis highlighted several barriers that patients and their family/carers face when contributing to this part of healthcare policy formation. Conclusions Our findings suggest that the parliamentary inquiry process in its current form is not an ideal vehicle by which patients and family/carers can contribute or influence healthcare policy. Despite calling for submissions from patients and their family/carers, the final report and subsequent health policy recommendations made by the inquiry do not appear to be patient-centric or reflective of the submissions written by these stakeholders. Increased transparency, development of processes to balance stakeholder priorities and improved accessibility for stakeholders to participate are needed if health-related parliamentary inquiries are to produce healthcare policy that ultimately meets the needs of patients and family/carers.


Assuntos
Política de Saúde , Narcolepsia , Austrália , Cuidadores , Humanos , Assistência Centrada no Paciente/métodos , Formulação de Políticas , Sono
18.
Front Neurosci ; 15: 700923, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34630009

RESUMO

Background: Cancer patients often describe poor sleep quality and sleep disruption as contributors to poor quality of life (QoL). In a cross-sectional study of post-treatment breast, endometrial, and melanoma cancer patients, we used actigraphy to quantify sleep regularity using the sleep regularity index (SRI), and examined relationships with reported sleep symptoms and QoL. Methods: Participants were recruited post-primary treatment (35 diagnosed with breast cancer, 24 endometrial cancer, and 29 melanoma) and wore an actigraphy device for up to 2 weeks and SRI was calculated. Self-report questionnaires for cancer-related QoL [European Organization for Research and Treatment of Cancer EORTC (QLQ-C30)] were completed. Data were compared using analysis of variance (ANOVA) or Chi-Square tests. Multivariate linear regression analysis was used to determine independent variable predictors for questionnaire-derived data. Results: Age distribution was similar between cohorts. Endometrial and breast cancer cohorts were predominantly female, as expected, and body mass index (BMI) was higher in the endometrial cancer cohort, followed by breast and melanoma. There were no differences between tumor groups in: total sleep time, sleep onset latency, bedtime, and SRI (breast 80.9 ± 8.0, endometrial 80.3 ± 12.2, and melanoma 81.4 ± 7.0) (all p > 0.05). A higher SRI was associated with both better functional and symptom scores, including increased global QoL, better physical functioning, less sleepiness and fatigue, better sleep quality, and associated with less nausea/vomiting, dyspnea, and diarrhea (all p < 0.05). Conclusion: In cancer patients post-treatment, greater sleep regularity is associated with increased global QoL, as well as better physical functioning and fewer cancer related symptoms. Improving sleep regularity may improve QoL for cancer patients.

19.
PLoS One ; 16(6): e0252569, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34086802

RESUMO

INTRODUCTION: The impact of sleep disordered breathing (SDB) on arterial intima-media thickness (IMT), a surrogate measure for cardiovascular disease, remains uncertain, in part because of the potential for non-SDB vascular risk factor interactions. In the present study, we determined predictors for common carotid (CCA) and femoral (CFA) artery IMT in an adult, sleep clinic cohort where non-SDB vascular risk factors (particularly diabetes) were eliminated or controlled. METHODS: We recruited 296 participants for polysomnography (standard SDB severity metrics) and CCA/CFA ultrasound examinations, followed by a 12 month vascular risk factor minimisation (RFM) and continuous positive pressure (CPAP) intervention for participants with a range of SDB severity (RFM Sub-Group, n = 157; apnea hyponea index [AHI]: 14.7 (7.2-33.2), median [IQR]). Univariable and multivariable linear regression models determined independent predictors for IMT. Linear mixed effects modelling determined independent predictors for IMT change across the intervention study. P<0.05 was considered significant. RESULTS: Age, systolic blood pressure and waist:hip ratio were identified as non-SDB predictive factors for CCA IMT and age, weight and total cholesterol:HDL ratio for CFA IMT. No SDB severity metric emerged as an independent predictor for either CCA or CFA IMT, except in the RFM Sub-Group, where a 2-fold increase in AHI predicted a 2.4% increase in CFA IMT. Across the intervention study, CCA IMT decreased in those who lost weight, but there was no CPAP use interaction. CFA IMT, however, decreased by 12.9% (95%CI 6.8, 18.7%, p = 0.001) in those participants who both lost weight and used CPAP > = 4hours/night. CONCLUSION: We conclude that SDB severity has little impact on CCA IMT values when non-SDB vascular risk factors are minimised or not present. This is the first study, however, to suggest a potential linkage between SDB severity and CFA IMT values. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry, ACTRN12611000250932 and ACTRN12620000694910.


Assuntos
Artérias Carótidas/diagnóstico por imagem , Artéria Femoral/diagnóstico por imagem , Síndromes da Apneia do Sono/diagnóstico por imagem , Túnica Íntima/diagnóstico por imagem , Adulto , Pressão Sanguínea , Índice de Massa Corporal , Feminino , Humanos , Masculino , Síndromes da Apneia do Sono/epidemiologia , Síndromes da Apneia do Sono/fisiopatologia
20.
PLoS One ; 16(4): e0249099, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33826649

RESUMO

BACKGROUND: Epidemiological studies demonstrate associations between obstructive sleep apnea (OSA) and cancer incidence and mortality. The aim of this study was to measure OSA in women with breast (BC) or endometrial cancer (EC) and associations with clinico-pathological tumor variables. METHODS AND FINDINGS: In a cross sectional study, women with BC (12 months) or EC (3 months) post-diagnosis were recruited from cancer clinics. We collected demographic, anthropometric data, cancer stage, grade, histopathology and history of cancer treatment and all subjects had in-laboratory polysomnography. Sleepiness was assessed with the Epworth Sleepiness Scale (ESS). We compared anthropometric and polysomnographic data between cancer groups (unpaired t-tests), and assessed relationships between cancer characteristics and OSA variables (Fishers exact test). There were no significant differences between average age (BC:59.6±8.7 years(n = 50); EC:60.3±7.7 years(n = 37)), or ESS score (BC:6.4±4.4; EC 6.8±4.7; mean±SD; all p>0.2), however, BMI was higher in EC (BC: 29.7±7.9kgm-2; EC: 34.2±8.0 kgm-2; p<0.05). BC had longer sleep latency (BC:31.8±32minutes; EC:19.3±17.9 minutes), less Stage 3 sleep (BC:20.0±5.2%; EC:23.6±8.2%) and more REM sleep (BC:21.1±6.9%; EC: 16.6±5.7%), all p<0.05. EC had lower average awake and asleep oxygen saturation levels (BC: 95.6±1.3%; EC: 94.6±1.9% [awake]: BC: 94.8±2.1%; EC: 93.3±2.4% [asleep]; both p<0.05). Apnea-Hypopnea Index (AHI) (BC: 21.2(7.3-36.9) events/hr; EC: 15.7 (10-33.5) events/hour (median (interquartile range)) was not different p = 0.7), however, 58% and 57% of women with BC and EC respectively, had an AHI>15 events/hour. In this small sample size group, no significant associations (all p>0.1) were detected between OSA metrics and clinico-pathological tumor variables. CONCLUSION: In postmenopausal women with breast or endometrial cancer there is high prevalence of OSA, with no association with specific tumor characteristics detected. Recognition of the high prevalence of OSA in women with cancer is important to recognise as it may impact on surgical risk and quality of life.


Assuntos
Neoplasias da Mama/complicações , Neoplasias do Endométrio/complicações , Apneia Obstrutiva do Sono/epidemiologia , Idoso , Neoplasias da Mama/epidemiologia , Neoplasias do Endométrio/epidemiologia , Feminino , Humanos , Pessoa de Meia-Idade , Prevalência
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