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Objective: To inform selection of physical measures for studies of acute respiratory distress syndrome (ARDS) survivors within 12 months of ARDS., Methods: Secondary analysis of data from 6-month survivors participating in a US multicentre prospective study (ARDSNet Long-Term Outcome Study, N=134) or a multisite prospective study in Baltimore, Maryland, USA (Improving Care of Acute Lung Injury Patients, N=99). Physical measures, assessed at 6-month follow-up, were categorised according to the WHO's International Classification of Disability and Health: body functions and structures, activity and participation. Patient-centred outcomes were evaluated at 6 and 12 months: survival, hospitalisation, alive at home status and health-related quality of life. Pearson correlation, linear and logistic regression models were used to quantify associations of physical measures with patient-centred outcomes., Main Results: No 6-month body functions and structures measure demonstrated consistent association with 6-month or 12-month outcomes in multivariable regression. The 6 min walk test, an activity measure, was associated with 6-month Short-Form 36 (SF-36) physical component scores (PCS, β range: 0.99 to 1.52, p<0.05). Participation measures (Functional Performance Inventory, FPI; Instrumental Activities of Daily Living, IADLs) were associated with SF-36 PCS (β range: FPI, 1.51-1.52; IADL, -1.88 to -1.32; all p<0.05) and Euro-QOL-5D utility score (β range: FPI, 2.00-3.67; IADL, -2.89 to -2.50; all p<0.01) at 6 and 12 months., Conclusions: Participation measures better reflect patient's quality of life than measures of body functions and structures within 12 months of ARDS among 6-month survivors, and are recommended for inclusion as a core measure in future studies., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Objective: Using nationally representative data, we examined biological, medical system, and sociodemographic factors that are associated with health-related quality of life as measured by a multidimensional index that accounts for a wide range of child health domains., Methods: Children aged > or = 6 years (N = 69,031) were drawn from the 2003/2004 National Survey of Children's Health. A random 25% sample was used to create a 12-item index of health-related quality of life with a range of 0 to 100, based on the conceptual framework of the Child Health and Illness Profile. Bivariate and multivariable regression analyses were conducted to identify the unadjusted and independent associations of key biological, medical system, and sociodemographic variables with health-related quality of life., Results: The index mean was 72.3 (SD: 14.5), median value was 73.7, and range was 11.1 to 99.9. Only 0.2% of children had a score at the ceiling. In multivariable regression analysis, the following variables were independently associated with lower health-related quality of life: biological factors (greater disease burden, severe asthma, and overweight status); medical system factors (unmet medical needs, lack of a regular health care provider, Medicaid insurance, or being uninsured previously during the year); and sociodemographic factors (older age groups, lower family education, single-mother family, having a smoker in the household, black race, and poverty)., Conclusions: Health-related quality of life in the United States is poorest for children and youth in lower socioeconomic status groups, those with access barriers, adolescents compared with children, and individuals with medical conditions. A multidimensional health-related quality-of-life index is an alternative to conventional measures (eg, mortality) for national monitoring of child health.

Objective: We sought to assess the reliability and validity of the PedsQL 4.0 SF15, a shortened version of the 23-item PedsQL 4.0 Generic Core Scales, which is a pediatric health-related quality of life (HRQoL) instrument, and the PedsQL 3.0 SF22 Asthma Module, a short-form of the PedsQL 3.0 Asthma Module., Methods: The PedsQL 4.0 SF15 and the PedsQL 3.0 SF22 Asthma Module were administered by telephone to 125 adolescents (aged 12-18) and 338 parents of children with asthma (aged 2-11). Healthy (n = 451) and chronically ill (n = 422) children, matched by age, respondent status, and ethnicity to the asthma sample, provided data for selected validity tests., Results: The Total Score from the PedsQL 4.0 SF15 and the Asthma Symptoms scale and Treatment Problems scale from the PedsQL 3.0 SF22 Asthma Module were sufficiently reliable for group comparisons (alpha > or = 0.70 across all age groups) in the asthma sample. The PedsQL 4.0 SF15 and the PedsQL 3.0 SF22 Asthma Module were able to distinguish between children of different clinical status and correlated as expected with measures of productivity and family functioning in the asthma sample. The psychometric properties of the PedsQL 4.0 SF15 were generally comparable to those of the original instrument., Conclusion: The Total Score of the PedsQL 4.0 SF15 and the Asthma Symptoms scale of the PedsQL 3.0 SF22 Asthma Module demonstrated the best reliability and validity and should be suitable for group-level comparisons of generic and asthma-specific HRQoL in clinical research studies of children with asthma.

Highlights • Multiple sclerosis (MS) relapses are often missed in clinical practice and in trials. • This study examined patient- and clinician-reported definitions, symptoms, and impact of MS relapse. • Clinicians and patients reported many classic neurologic symptoms as common in MS relapse. • Non-classic symptoms, as well as broad impacts, of relapses were also noted, especially by patients. • Incorporating such constructs into the definition of relapse may improve the recognition thereof. Abstract Background: In patients with relapsing forms of multiple sclerosis (MS), relapses are often unrecognized. These missed relapses have broad implications for the conduct of clinical trials as well as for the care and prognosis of people with multiple sclerosis (MS). With the ultimate goal of developing new methods to identify relapse, the purpose of this qualitative research with patients and clinicians was to examine the definition, symptoms, and impact of relapse. Methods: This qualitative study involved semi-structured interviews with clinicians specializing in MS and people with relapsing-remitting (RR) MS. A brief literature review was conducted to inform the development of interview guides. Qualitative data were gathered from 10 clinicians in a series of individual interviews and one focus group, followed by a series of interviews with 20 patients. Thematic analysis was conducted using ATLAS.ti to identify concepts emerging from the interviews. Results: Both clinicians and people with MS tend to describe classic neurologic symptoms that are confirmable on exam as indicative of relapses (e.g., sensory changes, vision issues, and walking difficulties), while also acknowledging that several less quantifiable symptoms are common (e.g., fatigue, pain, and cognitive issues). Patients described far-reaching impacts of relapse beyond just the quantifiable manifestations of the disease evaluated by commonly-used measures of MS severity and disability. Conclusion: MS relapses, which have substantial impact on patient functioning, appear to include symptoms beyond those in typical definitions of relapse. Incorporating such constructs into new measures of relapse could lead to improved recognition of relapse episodes. [ABSTRACT FROM AUTHOR]

Rationale: Survivors of acute respiratory failure commonly experience long-term psychological sequelae and impaired quality of life. For researchers interested in general mental health, using multiple condition-specific instruments may be unnecessary and inefficient when using the Medical Outcomes Study Short Form (SF)-36, a recommended outcome measure, may suffice. However, relationships between the SF-36 scores and commonly used measures of psychological symptoms in acute survivors of respiratory failure are unknown.Objectives: Our objective is to examine the relationship of the SF-36 mental health domain (MH) and mental health component summary (MCS) scores with symptoms of depression, anxiety, and post-traumatic stress disorder (PTSD) evaluated using validated psychological instruments.Methods: We conducted a cross-sectional analysis of 1,229 participants at 6- and 12-month follow-up assessment using data from five studies from the United States, the United Kingdom, and Australia.Measurements and Main Results: Symptoms were assessed using the Hospital Anxiety and Depression Scale (HADS), Depression Anxiety Stress Scales, the Davidson Trauma Scale, Impact of Event Scale (IES), and IES-Revised (IES-R). At 6-month assessment there were moderate to strong correlations of the SF-36 MH scores with HADS depression and anxiety symptoms (r = -0.74 and -0.79) and with IES-R PTSD symptoms (r = -0.60) in the pooled analyses. Using the normalized population mean of 50 on the SF-36 MH domain score as a cut-off, positive predictive values were 16 and 55% for substantial depression; 20 and 68% for substantial anxiety (Depression Anxiety Stress Scales and HADS, respectively); and 40, 44, and 67% for substantial PTSD symptoms (IES-R, IES, and Davidson Trauma Scale, respectively). Negative predictive values were high. The area under the receiver operating characteristics curve of the SF-36 MH score was high for depression, anxiety, and PTSD symptoms (0.88, 0.91, and 0.84, respectively). All results were consistent for the MCS, across the individual studies, and for the 12-month assessment.Conclusions: For researchers interested in general mental health status, the SF-36 MH or MCS offers a strong measure of psychological symptoms prevalent among survivors of acute respiratory failure. For researchers interested in specific conditions, validated psychological instruments should be considered. [ABSTRACT FROM AUTHOR]

Objective: To examine the reliability, validity, responsiveness, and minimal important difference of the 4-m gait speed test in acute respiratory distress syndrome survivors.Design: Secondary analyses of data from two longitudinal follow-up studies of acute respiratory distress syndrome survivors. Test-retest and inter-rater reliability, construct validity (convergent, discriminant, and known group), predictive validity, and responsiveness were examined. The minimal important difference was estimated using anchor- and distribution-based approaches.Setting: A national multicenter prospective study (ARDSNet Long-Term Outcome Study) and a multisite prospective study in Baltimore, MD (Improving Care of Acute Lung Injury Patients).Patients: Acute respiratory distress syndrome survivors with 4-m gait speed assessment up to 60 months after acute respiratory distress syndrome (ARDSNet Long-Term Outcome Study, n = 184; Improving Care of Acute Lung Injury Patients, n = 122).Interventions: Not applicable.Measurements and Main Results: Four-meter gait speed was assessed at 6- and 12-month follow-up (ARDSNet Long-Term Outcome Study) and 36-, 48-, and 60-month follow-up (Improving Care of Acute Lung Injury Patients). Excellent test-retest (intraclass correlation, 0.89-0.99 across studies and follow-up) and inter-rater (intraclass correlation, 0.97) reliability were found. Convergent validity was supported by moderate-to-strong correlations (69% of 32 > 0.40) with other physical function measures. Discriminant validity was supported by weak correlations (86% of 28 < 0.30) with mental health measures. Survivors with impaired versus nonimpaired measures of muscle strength and pulmonary function had significantly slower 4-m gait speed (all but one p < 0.05). Furthermore, 4-m gait speed significantly predicted future hospitalization and health-related quality of life. Gait speed changes were consistent with reported changes in function, supporting responsiveness. The estimated 4-m gait speed minimal important difference was 0.03-0.06 m/s.Conclusions: The 4-m gait speed is a reliable, valid, and responsive measure of physical function in acute respiratory distress syndrome survivors. The estimated minimal important difference will facilitate sample size calculations for clinical studies evaluating the 4-m gait speed test in acute respiratory distress syndrome survivors. [ABSTRACT FROM AUTHOR]

Objectives: To develop a valid, reliable measure that reflected the environment of respectfulness within the ICU setting.Design: We developed a preliminary survey instrument based on conceptual domains of respect identified through prior qualitative analyses of ICU patient, family member, and clinician perspectives. The initial instrument consisted of 21 items. After five cognitive interviews and 16 pilot surveys, we revised the instrument to include 23 items. We used standard psychometric methods to analyze the instrument.Settings: Eight ICUs serving adult patients affiliated with a large university health system.Subjects: ICU clinicians.Interventions: None.Measurements and Main Results: Based on 249 responses, we identified three factors and created subscales: General Respect, Respectful Behaviors, and Disrespectful Behaviors. The General Respect subscale had seven items (α = 0.932) and reflected how often patients in the ICU are treated with respect, in a dignified manner, as an individual, equally to all other patients, on the "same level" as the ICU team, as a person, and as you yourself would want to be treated. The Respectful Behaviors subscale had 10 items (α = 0.926) and reflected how often the ICU team responds to patient and/or family anxiety, makes an effort to get to know the patient and family as people, listens carefully, explains things thoroughly, gives the opportunity to provide input into care, protects patient modesty, greets when entering room, and talks to sedated patients. The subscale measuring disrespect has four items (α = 0.702) and reflects how often the ICU team dismisses family concerns, talks down to patients and families, speaks disrespectfully behind their backs, and gets frustrated with patients and families.Conclusions: We created a reliable set of scales to measure the climate of respectfulness in intensive care settings. These measures can be used for ongoing quality improvement that aim to enhance the experience of ICU patients and their families. [ABSTRACT FROM AUTHOR]