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Rationale: Pulmonary rehabilitation (PR) is the most effective strategy to improve health outcomes in people with chronic obstructive pulmonary disease (COPD), although it has had limited success in promoting sustained physical activity. PR with a strong focus on disease self-management may better facilitate long-term behavior change. Objectives: To compare a newly developed enhanced PR (EPR) program with a traditional PR program on outcome achievement. Methods: In this randomized parallel-group controlled trial, PR classes were block-randomized to EPR or traditional PR and were delivered over 16 sessions each. The EPR program incorporated new and updated "Living Well with COPD" education modules, which had a stronger focus on chronic disease self-management. Fidelity of the intervention for content and delivery was assessed. Physical activity, self-efficacy, exercise tolerance, and health-related quality of life (HRQoL) were collected before, after, and 6 months after PR. Healthcare visits were collected 2 years before PR and 1 year after. Mortality was recorded 1 year after PR. Results: Of the 207 patients with COPD enrolled, 108 received EPR and 99 received traditional PR. Physical activity (steps) and self-efficacy improved from before to after PR in both programs, with no differences between groups. These effects were not sustained at 6 months. Exercise tolerance and HRQoL improved from before to after PR with no between-group differences and were maintained at 6 months. Visits to primary care providers and respiratory specialists decreased in the EPR program relative to the traditional PR program. EPR was delivered as intended, and there was no meaningful cross-contamination between the two programs. Conclusions: Enhancing PR to have a greater emphasis on chronic disease self-management did not result in a superior improvement of physical activity and health outcomes compared with traditional PR except for reduced resource usage from primary and specialist physician visits in the EPR program.Clinical trial registered with ClinicalTrials.gov (NCT02917915).

Computer-adaptive tests use respondents' answers to previous questions to select the subsequent questions. They are gaining popularity for their increased measurement precision and decreased administration time compared to static questionnaires. The purpose of this study was to estimate the test-retest reliability and construct validity of the computer-adaptive test version of a participation measure, the Late Life Disability Instrument (LLDI-CAT) for people with COPD and to compare scores and administration time with those of the static LLDI. Among 76 older adults with COPD, scores on the LLDI-CAT were compared to scores on measures of related constructs, between groups based on symptom severity, prognosis and frailty phenotype, and to scores on the static LLDI. A subsample of 28 people completed the LLDI-CAT a second time within one week of the initial administration for test-retest reliability. The LLDI-CAT had very good test-retest reliability (ICC 2,1 0.88; SEM 2.74 points), fair correlations with physical function ( r  = 0.37-0.50), anxiety (r=-0.42), and depression (r=-0.50), fair to moderately-strong correlations with quality of life ( r  = 0.48-0.63), and strong correlation with the static LLDI limitation domain ( r  = 0.80). The LLDI-CAT scores differed between people with different symptom severity, prognosis and frailty phenotype ( p  ≤ 0.004). The mean administration time for the LLDI-CAT was 3.3 (1.5) minutes, less than that of the static LLDI at 6.3 (2.8) minutes ( p  < 0.001). The LLDI-CAT demonstrates evidence of test-retest reliability and construct validity, and correlates well with the limitation domain of the static LLDI for people with COPD. The LLDI-CAT can be used to assess participation for this population.

Background: Participation in life roles is a critical patient-centered health outcome associated with morbidity and mortality in older adults, but it is not measured routinely in people with COPD. We aimed to validate a participation measure, the Late Life Disability Instrument (LLDI), in people with COPD., Research Question: To what extent does the LLDI demonstrate test-retest measurement error and reliability, internal consistency, construct and face validity, and floor or ceiling effects when applied to people with COPD?, Study Design and Methods: In this cross-sectional study, LLDI scores were compared with scores on measures of theoretically related constructs and between groups based on symptom severity, prognosis, and frailty. A subsample (n = 36) completed the LLDI a second time over the phone within one week. Participants and health-care professionals were asked about the relevance, comprehensiveness, and comprehensibility of the LLDI. Floor and ceiling effects were explored, and the internal consistency (Cronbach's α) of the LLDI was calculated., Results: Ninety-six older adults with COPD participated. The frequency and limitation domains of the LLDI showed excellent test-retest reliability (two-way random effect intraclass correlation coefficient, 0.90 [standard error of measurement, 1.74 points] and 0.90 [standard error of measurement, 3.16 points], respectively). Both domains showed fair correlations with physical function, depression, and quality of life (r = 0.38-0.59). The relationship with anxiety was poor for the LLDI frequency domain (r = -0.21) and fair for LLDI limitation domain (r = -0.45). Both domains discriminated between people with different symptom severity, prognosis, and frailty (P ≤ .026). Neither domain showed floor or ceiling effects, and Cronbach's α was 0.69 and 0.91 for the LLDI frequency and limitation domains, respectively. All healthcare professionals and most participants agreed that the LLDI measures participation (79%) and that the items were relevant (81%)., Interpretation: The LLDI shows test-retest reliability, internal consistency, and construct and face validity in people with COPD. The LLDI can be used to assess participation in this population., (Copyright © 2020 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Objective: To determine the association between self-efficacy and health-related quality of life (HRQoL) in people with Chronic Obstructive Pulmonary Disease (COPD) and the moderating effect of self-efficacy type (exercise task, exercise barrier, COPD symptom, general) and HRQoL type (generic, COPD specific)., Methods: Databases were searched systematically from inception to January 2019. Methodological quality was assessed, and a meta-analysis was conducted following PRISMA guidelines (PROSPERO protocol: CRD42018114846)., Results: Across 31 coefficients, there was a positive relationship between self-efficacy and HRQoL (r = 0.38, 95 %CI [0.32, 0.45]). Exercise barrier self-efficacy had the strongest relationship to HRQoL (r = 0.42, 95 % CI [0.30, 0.52]), followed by COPD symptoms (r = 0.41, 95 % CI [0.33, 0.49]), exercise tasks (r = 0.40, 95 % CI [0.29, 0.50]), and general self-efficacy (r = 0.21, 95 % CI [0.14, 0.28]). Generic HRQoL had a similar relationship to self-efficacy (r = 0.38, 95 % CI [0.28, 0.47]) as COPD specific HRQoL (r = 0.38, 95 % CI [0.30, 0.46])., Conclusion: There is a moderate positive relationship between self-efficacy and HRQoL in COPD, with the relationship stronger for exercise and COPD symptoms than general self-efficacy., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Purpose: To describe balance for 12 mo in people with chronic obstructive pulmonary disease (COPD)., Methods: Individuals with COPD completed the Berg Balance Scale (BBS), the Balance Evaluation Systems Test (BEST), and the Activities-Specific Balance Confidence (ABC) scale before pulmonary rehabilitation (PR), post-PR and at 3, 6, and 12 mo. If an acute exacerbation of COPD (AECOPD) occurred, balance measures were repeated after 7 d and 1 mo. Descriptive data are displayed for balance measures at 5 time-points (pre-PR, post-PR, 3 mo, 6 mo, and 12 mo) in those without exacerbations. The outcome score at 7 d and 1 mo post-AECOPD was compared with the assessment closest to the AECOPD., Results: A total of 42 patients were recruited and 32 patients (17 male; mean age ± standard deviation = 68.5 ± 9.9 yr; FEV1 % predicted =38 ± 15%) completed balance measures post-PR. Seventeen, 11, and 6 patients, who did not exacerbate, completed balance measures at 3, 6, and 12 mo, respectively, with no overall change in balance measures over time. Of 32 patients, 15 experienced an AECOPD and of these, 8 and 11 completed measures at 7 d and 1 mo, respectively. Balance declined from baseline to 7 d (BBS, P = .010; BEST, P = .002) and to 1 mo post-AECOPD (BBS, P = .035). Balance recovered from 7 d to 1 mo post-AECOPD but did not return to baseline levels (BBS, P = .045; BEST, P = .006). There were no changes in balance confidence post-AECOPD., Conclusions: Balance remained stable over 12 mo after completion of PR in those who remained exacerbation-free. The impact of an AECOPD on measures of balance persisted after 1 mo.

Background: Increasing symptoms and activity restriction associated with COPD progression greatly impact on the lives of their informal caregivers, who play a vital role in maintaining their health. An understanding of this impact is important for clinicians to support caregivers and maintain a viable patient environment at home. This systematic review aimed to identify the instruments commonly used to assess informal caregiving in COPD and describe their measurement properties in this population., Methods: Searches were conducted in PubMed, Scopus, Web of Science, CINAHL and PsycINFO and in references of key articles, until November 2016 (PROSPERO: CRD42016041401). Instruments used to assess the impact of COPD on caregivers were identified and their properties described. Quality of studies was rated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Quality of the measurement properties of instruments was rated as 'positive', 'negative' or 'indeterminate'., Results: Patients cared for, had moderate to very severe COPD and the sample of caregivers ranged from 24 to 406. Thirty-five instruments were used in fifty studies to assess caregivers' psychological status and mood (9 instruments), burden/distress (12 instruments), quality of life (5 instruments) or other (9 instruments). Eighteen studies assessed the measurement properties of 21 instruments, most commonly hypothesis testing (known validity) and internal consistency. Study quality varied from 'poor' to 'fair' and with many properties rated as 'indeterminate'., Conclusions: Although several instruments have been used to assess the impact of COPD on caregivers, an increased understanding of their properties is needed before their widespread implementation., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Nonadherence to exercise is a main cause of reduced function for older adults with chronic disease following completion of rehabilitation. This quantitative study used a questionnaire to evaluate the barriers and facilitators to community-based exercise following rehabilitation, from the perspectives of older adults with chronic diseases and their healthcare professionals (HCPs). Questionnaires were administered one-on-one to 83 older adults and 35 HCPs. Those with chronic disease perceived cost (43%), travel time (43%), and physical symptoms (39%) as primary barriers to program participation, with similar perceptions across all chronic conditions. Access to a case manager (82%), a supported transition following rehabilitation (78%), and a condition-specific program (78%) were the primary facilitators. Significant between group differences were found between HCPs and older adults with chronic disease across all barriers (p < .001), with a greater number of HCPs perceiving barriers to exercise participation. There were no between-group differences in the perception of factors that facilitate participation in exercise.

Background: Burn survivors tend to have complex medical issues requiring rehabilitation to improve overall function and quality of life. A subset of burn patients treated in inpatient rehabilitation facilities (IRFs) may require more than 1 rehabilitation stay for the same injury., Objective: To compare the rehabilitation outcomes among burn patients admitted to an IRF who were discharged to acute care and then readmitted to an IRF with burn patients admitted to an IRF only 1 time., Design: Retrospective cohort study., Setting: Inpatient rehabilitation facilities., Participants: Burn injury patients aged 18 years or more who were admitted to IRFs between 2002 and 2011., Methods: We performed a secondary analysis of data from Uniform Data System for Medical Rehabilitation, a national data repository. Outcomes of the repeaters' second stay (n = 188) were compared to the nonrepeaters' first and only stay (n = 6,855), using linear regression and logistic regression to determine whether repeater status was associated with rehabilitation outcomes., Main Outcome Measurements: Functional status (using the Functional Independence Measure [FIM] instrument) at admission, discharge and change, length of stay, FIM efficiency (total FIM points gained per day), and discharge disposition., Results: Repeater status was inversely associated with discharge FIM total (coefficient = -3.42, 95% confidence interval = -5.76, -1.07) and FIM change (coefficient = -4.05, 95% CI = -6.34, -1.75) in linear regression models. No other significant differences were found, and those differences in discharge FIM total and FIM change were small., Conclusions: Differences found in rehabilitation outcomes between the repeater and nonrepeater groups were small and may not reflect clinically meaningful differences. Burn injury patients who required a second IRF admission had rehabilitation outcomes similar to those of burn injury patients who did not require a second IRF admission, emphasizing the value of inpatient rehabilitation for burn injury IRF readmissions., (Copyright © 2014 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.)

Background: Chronic diseases are the leading cause of death and disability worldwide. Preliminary evidence suggests that community-based exercise (CBE) improves functional capacity (FC) and health-related quality of life (HRQL)., Objective: To describe the structure and delivery of CBE programs for chronic disease populations and compare their impact on FC and HRQL to standard care., Research Design: Randomized trials examining CBE programs for individuals with stroke, chronic obstructive pulmonary disease, osteoarthritis, diabetes, and cardiovascular disease were identified. Quality was assessed using the Cochrane risk of bias tool. Meta-analyses were conducted using Review Manager 5.1. The protocol was registered on PROSPERO (CRD42012002786)., Results: Sixteen studies (2198 individuals, mean age 66.8±4.9 y) were included to describe program structures, which were comparable in their design and components, irrespective of the chronic disease. Aerobic exercise and resistance training were the primary interventions in 85% of studies. Nine studies were included in the meta-analysis. The weighted mean difference for FC, evaluated using the 6-minute walk test, was 41.7 m (95% confidence interval [CI], 20.5-62.8). The standardized mean difference for all FC measures was 0.18 (95% CI, 0.05-0.3). The standardized mean difference for the physical component of HRQL measures was 0.21 (95% CI, 0.05-0.4) and 0.38 (95% CI, 0.04-0.7) for the total score., Conclusions: CBE programs across chronic disease populations have similar structures. These programs appear superior to standard care with respect to optimizing FC and HRQL in individuals with osteoarthritis; however, the effect beyond this population is unknown. Long-term sustainability of these programs remains to be established.

The aim of the present study was to describe the perspectives of individuals with chronic obstructive pulmonary disease (COPD) who participated in a minimally supervised maintenance exercise intervention and identify the barriers and facilitators associated with participation. The intervention was delivered in a community center and was designed to maintain exercise capacity and quality of life following discharge from pulmonary rehabilitation. This study utilized qualitative focus groups (FGs) involving individuals with COPD (n = 12) who had been attending the maintenance community program for at least 6 months. All individuals who met the inclusion criteria for the FGs consented to participate. Four themes were identified: (1) issues around attendance; (2) perceived benefits of the program; (3) perceived burdens of the program; and (4) recommendations for program improvement. Participants expressed more benefits than barriers, stating that their experience of improved function and quality of life facilitated their attendance. Barriers included exacerbations, fatigue, access to transportation, and weather. Participants endorsed the benefits of a community-based maintenance exercise program after pulmonary rehabilitation. Minimally supervised community-based programs with access to a case manager may provide a useful approach to enhancing adherence to exercise.

Objective: To examine 3-year quality-of-life (QOL) outcomes among United States adults with Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV) antisocial personality disorder (ASPD), syndromal adult antisocial behavior without conduct disorder (CD) before age 15 [adulthood antisocial behavioral syndrome (AABS), not a DSM-IV diagnosis], or no antisocial behavioral syndrome at baseline., Method: Face-to-face interviews (n = 34 653). Psychiatric disorders were assessed using the Alcohol Use Disorder and Associated Disabilities Interview Schedule - DSM-IV Version. Health-related QOL was assessed using the Short-Form 12-Item Health Survey, version 2 (SF-12v2). Other outcomes included past-year Perceived Stress Scale-4 (PSS-4) scores, employment, receipt of Supplemental Security Income (SSI), welfare, and food stamps, and participation in social relationships., Results: Antisocial personality disorder and AABS predicted poorer employment, financial dependency, social relationship, and physical health outcomes. Relationships of antisociality to SSI and food stamp receipt and physical health scales were modified by baseline age. Both antisocial syndromes predicted higher PSS-4, AABS predicted lower SF-12v2 Vitality, and ASPD predicted lower SF-12v2 Social Functioning scores in women., Conclusion: Similar prediction of QOL by ASPD and AABS suggests limited utility of requiring CD before age 15 to diagnose ASPD. Findings underscore the need to improve prevention and treatment of antisocial syndromes., (Published 2012. This article is a US Government work and is in the public domain in the USA.)

This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling's lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing., (Copyright © 2011 Wiley-Liss, Inc.)

This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride., (Copyright © 2011 Wiley-Liss, Inc.)

Randomised trials have demonstrated that pulmonary rehabilitation (PR) can improve dyspnoea, exercise tolerance and health related quality of life. Rehabilitation has traditionally been provided in secondary care to patients with moderate to severe disease. Current concepts are however recommending that it should be delivered in a primary and community care setting for patients with milder disease. There are several opportunities for spreading the word for PR in primary care. One of these is to improve access to PR for all those disabled by their disease by the increase of community schemes and one such scheme being utilised in Canada is reviewed. The essential components of PR include behavior change, patient self-management and prescriptive exercise. In the last decade new strategies have been developed to enhance the effects of exercise training. An overview of these new approaches being an adjunct to exercise training is reviewed. Although the role of exercise training is well established, we are only just beginning to appreciate the importance of behavior change and patient self-management in contributing to improved health and diminished healthcare resource utilisation.

Background: Exercise training within the context of pulmonary rehabilitation improves outcomes of exercise capacity, dyspnea and health-related quality of life in individuals with chronic obstructive pulmonary disease (COPD). Supplemental oxygen in comparison to placebo increases exercise capacity in patients performing single-assessment exercise tests. The addition of supplemental oxygen during exercise training may enable individuals with COPD to tolerate higher levels of activity with less exertional symptoms, ultimately improving quality of life., Objectives: To determine how supplemental oxygen in comparison to control (compressed air or room air) during the exercise-training component of a pulmonary rehabilitation program affects exercise capacity, dyspnea and health-related quality of life in individuals with COPD., Search Strategy: All records in the Cochrane Airways Group Specialized Register of trials coded as 'COPD' were searched using the following terms: (oxygen* or O2*) AND (exercis* or train* or rehabilitat* or fitness* or physical* or activ* or endur* or exert* or walk* or cycle*). Searching the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE and CINAHL databases identified studies. The last search was carried out in June 2006., Selection Criteria: Only randomized controlled trials (RCTs) comparing oxygen-supplemented exercise training to non-supplemented exercise training (control group) were considered for inclusion. Participants were 18 years or older, diagnosed with COPD and did not meet criteria for long-term oxygen therapy. No studies with mixed populations (pulmonary fibrosis, cystic fibrosis, etc) were included. Exercise training was greater than or equal to three weeks in duration and included a minimum of two sessions a week., Data Collection and Analysis: Two review authors independently selected trials for inclusion in the review and extracted data. Weighted mean differences (WMD) with 95% confidence intervals (CI) were calculated using a random-effects model. Missing data were requested from authors of primary studies., Main Results: Five RCTs met the inclusion criteria. The maximum number of studies compared in the meta-analysis was three (31 on oxygen versus 32 control participants), because all included studies did not measure the same outcomes. When two studies were pooled, statistically significant improvements of oxygen-supplemented exercise training were found in constant power exercise time, WMD 2.68 minutes (95% CI 0.07 to 5.28 minutes). Supplemental oxygen increased the average exercise time from 6 to 14 minutes; the control intervention increased average exercise time from 6 to 12 minutes. Constant power exercise end-of-test Borg score (on a scale from 1 to 10) also showed statistically significant improvements with oxygen-supplemented exercise training, WMD -1.22 units (95% CI -2.39 to -0.06). One study showed a significant improvement in the change of Borg score after the shuttle walk test, by -1.46 units (95% CI -2.72 to -0.19). There were no significant differences in maximal exercise outcomes, functional exercise outcomes (six-minute walk test), shuttle walk distance, health-related quality of life or oxygenation status. According to the GRADE system most outcomes were rated as low quality because they were limited by study quality., Authors' Conclusions: This review provides little support for oxygen supplementation during exercise training for individuals with COPD, but the evidence is very limited. Studies with larger number of participants and strong design are required to permit strong conclusions, especially for functional outcomes such as symptom alleviation, health-related quality of life and ambulation.

Background: Selection of heath-related quality of life (HRQL) instruments that are most responsive to changes in HRQL prevents investigators from drawing false-negative conclusions about the effectiveness of an intervention. The objective of this study was to compare the responsiveness of the Chronic Respiratory Questionnaire (CRQ), the St. Georges Respiratory Questionnaire (SGRQ) and four other HRQL instruments., Methods: We enrolled 177 patients with chronic lung disease, primarily COPD (93%), who completed 8 weeks of respiratory rehabilitation. Patients completed the CRQ, the SGRQ and four generic measures (SF-36, Feeling Thermometer, Standard Gamble and Health Utilities index 3) at the beginning of the rehabilitation program and 12 weeks thereafter. We calculated standardized response means (SRMs) for each instrument, from the change score divided by the standard deviation of the change score., Results: We observed the largest SRM for the CRQ (0.24-0.66 for the four CRQ domains on the interviewer-administered and 0.56-0.84 for the self-administered format) and the SGRQ (0.33-0.51 for the three SGRQ domains and total score). The CRQ dyspnea domain was statistically significantly more responsive than any other instrument including the SGRQ. For the SGRQ, the total and impacts domain were significantly more responsive than the generic and preference-based instruments., Conclusions: This study confirms that the CRQ and SGRQ are substantially more responsive than generic measures, and suggests particularly strong responsiveness for the self-administered CRQ.

Background: Optimizing the validity and responsiveness of utility measures will enhance their usefulness in randomized trials. We evaluated the impact of clinical marker state (CMS) rating prior to patients' rating their own health on two utility instruments (feeling thermometer (FT) and standard gamble (SG)) in patients with chronic respiratory disease (CRD)., Methods: We randomized 182 patients with CRD to complete the FT (self-administered) and SG with CMS (FT+/SG+, n=91) or without marker states (FT-/SG-, n=91) before and after undergoing respiratory rehabilitation in a multi-center trial., Results: Use of CMS did not influence baseline utility scores. Improvement after therapy on the scale from 0 (dead) to 1.0 (full health) was 0.04 both in FT+ (p=0.03) and FT- (p=0.02; the difference between FT+ and FT- was 0.00, p=0.83). Improvement on the SG was 0.05 in both SG+ (p=0.08) and SG- (p=0.04; difference between SG+ and SG- 0.00, p=0.95). Correlations with other health related quality of life scores were highest for FT+., Conclusion: Administration of CMS did not improve responsiveness of the FT but may have improved construct validity. The SG showed limited construct validity and responsiveness that was not influenced by CMS use.

The chronic respiratory questionnaire, available as an interviewer and a self-administered instrument, includes 20 items across four domains: dyspnea (5 items), fatigue (4 items), emotional function (7 items), and mastery (4 items). When completing this instrument, patients rate their experience on a 7-point scale ranging from 1 (maximum impairment) to 7 (no impairment). The Chronic Respiratory Questionnaire has demonstrated excellent measurement properties for both discriminative and evaluative purposes and served as a model in numerous methodological studies in chronic airflow limitation and patients with chronic obstructive pulmonary disease. We performed a systematic review of the literature on the chronic respiratory questionnaire to summarize the key qualities of the chronic respiratory questionnaire and to appraise the work regarding the minimal important difference of the chronic respiratory questionnaire. This paper includes a revision of our initial definition of the minimal important difference and a methodological framework for using anchor based approaches to establish the minimal important difference pioneered by Jaeschke and colleagues. Other approaches to evaluate the minimal important difference include distribution-based methods and panel-based methods. Investigators have used all of these approaches to establish the minimal important difference for the chronic respiratory questionnaire and the results are in general agreement with the minimal important difference of 0.5 for the mean domain scores of the chronic respiratory questionnaire. As a result of this literature review and discussion at the workshop, we established several research objectives. These objectives include the exploration of presentation of quality of life information and prospective anchor-based approaches.

The original chronic respiratory questionnaire (CRQ), one of the most widely used measures of health-related quality of life (HRQL) in chronic respiratory disease (CRD), is traditionally interviewer administered (IA) and includes an individualised dyspnoea domain. The present authors studied the impact of self-administered (SA) and standardised dyspnoea questions on CRQ measurement properties. In a factorial design multicentre trial, 177 patients with CRD (mean age 67.7 yrs; mean forced expiratory volume in one second per cent predicted 44.6%) were randomised to CRQ-IA (n = 86) or CRQ-SA (n = 91), and to initially complete the standardised or individualised items before and after respiratory rehabilitation. While maintaining validity, the CRQ-SA proved more responsive to changes in HRQL than the CRQ-IA in all domains. Compared with the standardised dyspnoea domain, the individualised dyspnoea domain indicated greater responsiveness. The correlations of baseline scores and change scores with other HRQL instruments indicated good validity of the CRQ-SA. In conclusion, self-administration and standardisation of the chronic respiratory questionnaire maintains validity and responsiveness relative to the interviewer-administered chronic respiratory questionnaire. These results challenge the assumption that interviewer-administered questionnaires are superior to self-administered questionnaires in older patients with chronic respiratory disease.

Objectives: To identify user perspectives on the issues that impact the quality of the daily lives of ventilator-assisted individuals living in the community., Methods: Semistructured interviews were held with 26 Canadian ventilator-assisted individuals (mean age 44+/-14 [SD] years, range 23 to 60 years; mean ventilator experience 18+/-13 years, range three to 53 years) whose disability from neuromuscular conditions necessitated assistance with activities of daily living. Participants described their daily life experiences and perceptions of the factors that limited or enhanced their quality. Interviews were tape-recorded, transcribed and analyzed for emergent codes and themes., Results: Ventilator users characterized important issues in terms of personal successes and limitations, as well as dependencies on others for daily living. Personal support services, income security, health care and transportation were important positive contributors to their quality of life. Dependency on others was clearly a negative contributor. The ventilator was regarded as a form of assistive technology, similar to a wheelchair. Ventilator users perceived that ventilation was associated with a stigma and negative assumptions about disability, particularly if suctioning was required., Conclusions: The majority of participants considered home mechanical ventilation to be a positive benefit for independent living, enhancing their overall health. They were clear as to the issues of importance to them, and formulated recommendations for health care providers and policy makers that could improve the quality of their daily lives. Many of the issues identified in the present report are faced by the growing community of ventilator users.

Background/objectives: The chronic respiratory questionnaire (CRQ), the St. Georges Respiratory Questionnaire (SGRQ), and the feeling thermometer (FT) evaluate change in health-related quality of life (HRQL) in patients with chronic airflow limitation (CAL). Although the interpretability, and in particular the minimal important difference (MID) in score changes, is well established for the CRQ, this is not the case for the SGRQ and FT. The objective of our study is to explore the interpretation of the SGRQ and FT., Methods: We analyzed data from 84 patients who completed the CRQ, SGRQ, and FT before beginning pulmonary rehabilitation and 3 months later. We calculated correlations between the four CRQ domains (dyspnea, fatigue, emotional function, and mastery) and the three SGRQ domains (symptoms, activities, and impact), the SGRQ total score, and the FT. When Pearson's correlations were >/=0.5, we constructed regression equations and used the slope to calculate the change in SGRQ and FT score that corresponded to a change in CRQ score of 0.5 (the MID). Having established MID for SGRQ we than used a similar approach to examine the relation between the SGRQ and FT results., Results: Comparison with the CRQ dyspnea domain suggested the MID in SGRQ total score is approximately 3.05 with a 95% confidence interval (95% CI) ranging from 0.39 to 5.71 and a change of 5.67 (95% CI 3.43-7.92) represents a moderate change (1.0 on the CRQ dyspnea domain). The MID for the FT based on the CRQ fatigue domain was 6.1 (95% CI 1.87-10.28). The FT MID based on the SGRQ activities domain, impacts domain, and total score were, respectively, 7.4 (95% CI 3.44-11.35), 5.6 (95% CI 1.6-9.64), and 5.9 (95% CI 1.97-9.78)., Conclusions: An MID for the SGRQ approximates the previously suggested estimate of 4 on a scale of 0 to 100. The MID for the FT in patients with CAL is approximately 5 to 8 units on the 0 to 100 scale. These MID estimates should facilitate interpretation of clinical trials in which outcome measures include the SGRQ or FT.

Study Objectives: Previous studies with short recall periods have suggested that informed administration (previous responses available) may improve the responsiveness and validity of health-related quality-of-life (HRQL) questionnaires in comparison to blind administration (previous responses unavailable). Informed administration may, however, have less impact in studies with longer recall periods. The objective of this randomized trial was to compare the validity and responsiveness of the blind and informed Chronic Respiratory Questionnaire (CRQ) and the St. George's Respiratory Questionnaire (SGRQ) with a 3-month interval between questionnaire completion., Study Design: We randomized 85 patients to blind or informed administration of the CRQ and SGRQ before and after they underwent a standard respiratory rehabilitation program. Patients also completed other HRQL instruments., Results: At the follow-up administration, we observed important and statistically significant improvement in all four CRQ domains and three SGRQ domains. The results of blind and informed administration differed little. This was true for both the CRQ and the SGRQ, and for both responsiveness and validity., Conclusions: In contrast to the improved measurement properties after shorter recall periods, the administration of the informed version after > or = 12 weeks may not result in improvements in responsiveness or validity.

The purpose of this study was to examine the effects of two post-rehabilitation programmes on functional exercise tolerance and health-related quality of life in patients with chronic obstructive pulmonary disease (COPD). Subjects with COPD (n=109) were randomised to receive either enhanced follow-up (EF) or conventional follow-up (CF). Subjects in the EF group attended a monthly support group and received a telephone call from a staff member at the midpoint (2 weeks) between their visits. Both groups had scheduled appointments with a physical therapist and physician at 3-monthly intervals after discharge. Longitudinal data were recorded in 85 subjects (37 EF and 48 CF). Over the course of the study, there was no difference in distance walked in 6 min between the two groups but a significant difference for time and a group-time interaction. There was no difference in total chronic respiratory disease questionnaire score between groups at baseline or at any time interval despite a significant difference with time. There was a clear deterioration in functional exercise capacity and health-related quality of life after completion of respiratory rehabilitation but no difference between the groups.

The overall success of orthotopic liver transplantation (OLTX) includes not only survival, but quality of life (QOL) as well. We studied one controversial group of OLTX recipients, patients transplanted for alcoholic liver disease (Laennec's), to determine if their post-OLTX QOL was similar to that of patients transplanted for non-alcoholic liver disease (non-Laennec's). Over a 10-yr period, patients undergoing OLTX at our institution were asked to complete a QOL questionnaire addressing a wide range of topics from demographics and employment to symptom distress/frequency, activities of daily living, and effect of loss of health on daily life. Twenty-four Laennec's and 100 non-Laennec's OLTX recipients completed the questionnaire at both their 2- and 5-yr follow-up visits at our institution. Both groups were well-matched in age, race, and patient location status at the time of OLTX. No significant differences could be detected between Laennec's and non-Laennec's scores regarding overall QOL, including one's ability to function, health perception, and self-perception at 2 and 5 years post-OLTX, and between 2 and 5 years post-OLTX. Although not between groups, a significant difference was noted regarding patients' satisfaction with life, with less satisfaction reported at the 5-yr versus the 2-yr time point post-OLTX. Rates of current/recent employment between both groups were also similar at 2 years post-OLTX, and again at 5 years post-OLTX. We conclude that overall QOL and employment levels appear similar between patients transplanted for alcoholic and non-alcoholic liver disease. This similarity appears to extend to 5 years post-OLTX.

The purpose of this study was to compare the performance of measures of health-related quality of life in a randomized controlled trial of respiratory rehabilitation versus conventional community care for patients with chronic airflow limitation. The study included 89 stable patients with moderate to severe chronic airflow limitation with measurement of health status at 12, 18, and 24 weeks. Outcomes included two disease-specific (the Oxygen Cost Diagram and the Chronic Respiratory Questionnaire [CRQ]) measures, a generic health profile (the Sickness Impact Profile [SIP]), and two utility measures (the Standard Gamble and the Quality of Well-Being index [QWB]). Of the measures, only the four domains of the CRQ (dyspnea, fatigue, mastery, and emotional function) showed statistically significant differences (P < or = 0.05) between treatment and control groups. Correlation between change in the CRQ and change in other relevant measures, including the 6-minute walk test and global ratings of change in dyspnea, fatigue, and emotional function were generally weak to moderate (from 0.19 to 0.51). All correlations between change in the QWB, SIP, and Standard Gamble and other measures were very weak or weak (up to 0.30). Correlation between change in the three generic measures were all very weak (<0.15). The results suggest that unless investigators include responsive and valid disease-specific measures of health-related quality of life in controlled trials in chronic diseases, they risk misleading conclusions about the effect of treatments on health status.

Objective: To determine the extent to which mood, symptoms, lung function, and social support of patients with chronic obstructive pulmonary disease (COPD) predicted their level of functioning over a 30-month period., Design: Prospective, longitudinal., Setting: The homes of patients living in or adjacent to metropolitan Toronto., Subjects: Seventy-one patients (48 men and 23 women) with COPD who had a forced expiratory volume in 1 second less than 50% of predicted (FEV1 < 50%) and who spoke English. They ranged in age from 43 to 81 years (mean 66.37 years)., Outcome Measures: The patients' level of functioning at the final data collection visit, 30 months after the initial measure., Instruments: At both data collection visits patients completed measures of mood (negative mood scales of the Profile of Mood States), symptoms (Bronchitis-Emphysema Symptom Checklist), social support (Personal Resource Questionnaire), and functioning (Sickness Impact Profile)., Results: Data were analyzed by use of multiple regression analysis. From measures taken at the initial visit (T1), the best predictors of patients' functioning at 30 months (T2) were their functioning at T1, symptoms, FEV1, and age. Together these accounted for 70% of the variance in the final functioning scores, with initial functioning scores accounting for 51% of the variance. The most prevalent symptoms were dyspnea and fatigue, and both were highly correlated with functioning scores 30 months later., Conclusions: In this study, symptoms, FEV1, and age are predictive of functioning in patients with COPD over a 30-month time frame. However, only 50% of the 143 patients recruited into the study completed it. Therefore caution needs to be exercised when the results are applied to other patients with COPD.

We prospectively studied adult liver transplant (OLTX) recipients to evaluate the effect of OLTX on quality of life (QOL). Over an 8-year period, all adult patients undergoing OLTX at our institution were asked to complete a psychological questionnaire that probed broad facets of QOL. Patients seen for their 1, 2, and 5 or more-year post-OLTX visits were also asked to complete the form. Questions were then grouped by categories broadly highlighting self-image (SI), health perception (HP), ability to function (F), and ability to work (W). Questions ranged from demographic and occupational topics to symptom distress/frequency, activities of daily living, and the impact of health on daily life. Numerical scores were assigned to each question, and added to derive scores on SI, HP, and F. Higher scores reflect better QOL. Employment data (W) were also compared, though not amenable to scoring. A total of 573 forms were completed (210 pretransplant, 150 at 1 year, 131 at 2 years, 79 at 5 years). All posttransplant scores were significantly higher than pretransplant ones (P < or = .0001, ANOVA). Scores at posttransplant time points were not significantly different from each other. Subscores of SI and HP revealed less symptom frequency and distress following OLTX (P < or = .0003) continuing to beyond 5 years. Health limitations on activities decreased both at 1 year post-OLTX and again at 2 years (P < or = .0001) and were sustained to beyond 5 years. Fewer people were working for pay at 1 year post-compared with pre-OLTX, but pre-OLTX levels of employment had been regained by the second year, continuing to increase to beyond 5 years. OLTX leads to improved QOL by the end of the first posttransplant year, sustained through the 5th posttransplant year and beyond. Self-image, functioning ability, and perception of health status were significantly improved. Ill health interference in daily life continues to decrease as OLTX becomes more remote. Employment suffers early after OLTX, but recovers by the second post-OLTX year and continues to increase long-term.

Background: Clinical trials measure exacerbations of chronic obstructive pulmonary disease (COPD) inconsistently. A study was undertaken to determine if different methods for ascertaining and analysing COPD exacerbations lead to biased estimates of treatment effects. Methods: Information on the methods used to count, analyse and report COPD exacerbation rates was abstracted from clinical trials of long-acting bronchodilators or long-acting bronchodilator/inhaled steroid combination products published between 2000 and 2006. Data from the Canadian Optimal Therapy of COPD Trial was used to illustrate how different analytical approaches can affect the estimate of exacerbation rates and their confidence intervals. Results: 22 trials (17 156 patients) met the inclusion criteria and were reviewed. None of the trials adjudicated exacerbations or determined independence of events. 14/22 studies (64%) introduced selection bias by not analysing outcome data for subjects who prematurely stopped study medications. Only 31% of trials used time-weighted analyses to calculate the mean number of exacerbations/patient-year and only 15% accounted for between-subject variation. In the Canadian Optimal Therapy of COPD Trial the rate ratio for exacerbations/patient-year was 0.85 when all data were included in a time-weighted analysis, but was overestimated as 0.79 when data for those who prematurely stopped study medications were excluded and was further overestimated as 0.46 when a time-weighted analysis was not conducted; p values ranged from 0.03 to 0.24 depending on how exacerbations were determined and analysed. Conclusions: Clinical trials have used widely different methods to define and analyse COPD exacerbations and this can lead to biased estimates of treatment effects. Future trials should strive to include blinded adjudication and assessment of the independence of exacerbation events, and trials should report time-weighted intention-to-treat analyses with adjustments for between-subject variation in COPD exacerbations. [ABSTRACT FROM AUTHOR]