Correspondence Between the RAND–Negative Impact of Asthma on Quality of Life Item Bank and the Marks Asthma Quality of Life Questionnaire

Background

In many research and clinical settings in which patient-reported outcome (PRO) measures are used, it is often desirable to link scores across disparate measures or to use scores from 1 measure to describe scores on a separate measure. However, PRO measures are scored by using a variety of metrics, making such comparisons difficult.

Objective

The objective of this article was to provide an example of how to transform scores across disparate measures (the Marks Asthma Quality of Life Questionnaire [AQLQ-Marks] and the newly developed RAND–Negative Impact of Asthma on Quality of Life item bank [RAND-IAQL-Bank]) by using an item response theory (IRT)-based linking method.

Methods

Our sample of adults with asthma (N = 2032) completed 2 measures of asthma-specific quality of life: the AQLQ-Marks and the RAND-IAQL-Bank. We use IRT-based co-calibration of the 2 measures to provide a linkage, or a common metric, between the 2 measures. Co-calibration refers to the process of using IRT to estimate item parameters that describe the responses to the scales’ items according to a common metric; in this case, a normal distribution transformed to a T scale with a mean of 50 and an SD of 10.

Results

Respondents had an average age of 43 (15), were 60% female, and predominantly non-Hispanic White (56%), with 19% African American, 14% Hispanic, and 11% Asian. Most had at least some college education (83%), and 90% had experienced an asthma attack during the last 12 months. Our results indicate that the AQLQ-Marks and RAND-IAQL-Bank scales measured highly similar constructs and were sufficiently unidimensional for IRT co-calibration. Once linked, scores from the 2 measures were invariant across subgroups. A crosswalk is provided that allows researchers and clinicians using AQLQ-Marks to crosswalk to the RAND-IAQL toolkit.

Conclusions

The ability to translate scores from the RAND-IAQL toolkit to other “legacy” (ie, commonly used) measures increases the value of the new toolkit, aids in interpretation, and will hopefully facilitate adoption by asthma researchers and clinicians. More generally, the techniques we illustrate can be applied to other newly developed or existing measures in the PRO research field to obtain crosswalks with widely used traditional legacy instruments.     

Radioprotectants: Adding Quality of Life to Survivorship?

OBJECTIVES: To explore the use of radioprotectants in oncology and their affect on quality of life (QOL). DATA SOURCES: Textbooks, manuals, and journals in radiation oncology and cancer nursing. CONCLUSION: Many studies have shown that the use of amifostine has decreased the intensity and severity of treatment-related side effects as well as improving QOL. However, more research is needed in the development of newer agents and refining older agents. IMPLICATIONS FOR NURSING PRACTICE: With the advent of combined modality treatments, overall response and survival benefit has increased as well as enhanced toxicities affecting one's QOL. Agents such as radioprotectants and advances in supportive care have assisted in minimizing treatment-related side effects. Strides toward providing quality, compassionate care remain the goal of oncology nurses, while enhancing the QOL for cancer patients.     

Is the Life Space Assessment Applicable to a Palliative Care Population? Its Relationship to Measures of Performance and Quality of Life

ContextThe spatial environments that palliative care patients frequent for business and leisure constrict as their disease progresses and their physical functioning deteriorates. Measuring a person's movement within his or her own environment is a clinically relevant and patient-centered outcome because it measures function in a way that reflects actual and not theoretical participation.ObjectivesThis exploratory study set out to test whether the Life-Space Assessment (LSA) would correlate with other commonly used palliative care outcome measures of function and quality of life.MethodsThe baseline LSA, Australia-modified Karnofsky Performance Status Scale (AKPS), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTC QLQ-C15-PAL) scores from two large clinical trials were used to calculate correlation coefficients between the measures. Convergent validity analysis was undertaken by comparing LSA scores between participants with higher (≥70) and lower (≤60) AKPS scores.ResultsThe LSA was correlated significantly and positively with the AKPS, with a moderate correlation coefficient of 0.54 (P < 0.001). There was a significant weak negative correlation between the LSA and the EORTC QLQ-C15-PAL, with a small coefficient of −0.22 (P = 0.027), but a strong correlation between the LSA and the EORTC QLQ-C15-PAL item related to independent activities of daily living (r = −0.654, P < 0.01). A significant difference in the LSA score between participants with higher (≥70) and lower (≤60) AKPS scores t(97) = −4.35, P < 0.001) was found.ConclusionThe LSA appears applicable to palliative care populations given the convergent validity and capacity of this instrument to differentiate a person's ability to move through life-space zones by performance status. Further research is required to validate and apply the LSA within community palliative care populations.     

Is Fatigue Associated With Short-Term Health-Related Quality of Life in Stroke?

Tang WK, Lu JY, Chen YK, Mok VC, Ungvari GS, Wong KS. Is fatigue associated with short-term health-related quality of life in stroke?

Objective

To evaluate the relation between poststroke fatigue and short-term health-related quality of life (HRQOL) in Chinese patients with first or recurrent stroke.

Design

Cross-sectional survey.

Setting

Acute stroke unit of a general hospital.

Participants

A total of 458 patients with acute ischemic stroke admitted to the acute stroke unit of a university-affiliated regional hospital in Hong Kong.

Interventions

Not applicable.

Main Outcome Measures

HRQOL was assessed with the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) at 3 months after the subjects' index stroke. Fatigue was evaluated by using the Fatigue Severity Scale (FSS). The correlation between the FSS and SF-36 scores was examined and adjusted for potential confounders, including age, sex, marital status, previous stroke, social support, global cognitive functions, neurologic deficits, and depressive symptoms.

Results

Univariate analysis revealed that fatigue was a significant correlate of all SF-36 domain scores. The magnitude of correlation was highest for the vitality domain (r=−.605, Bonferroni corrected P<.05) and lowest for the physical functioning domain (r=−.202, Bonferroni corrected P<.05). Canonic correlation analysis indicated that FSS was strongly related to the HRQOL with a loading of −.678. Increasing fatigue was associated with a lower HRQOL. The association between FSS and HRQOL remained significant in the subsequent multivariate regression analysis, having adjusted for possible confounders.

Conclusions

These findings suggest that fatigue has an impact on short-term HRQOL in Chinese stroke patients. The early identification and treatment of fatigue may improve HRQOL of stroke patients.     

What Is the Quality of Life for Survivors of Cardiac Arrest? A Prospective Study

Objective: To evaluate the quality of life of survivors of in-hospital and out-of-hospital cardiac arrest, and to correlate quality of life with clinically important parameters. Methods: Cohort followed at least six months after hospital discharge. Eligible patients had survived to hospital discharge after sudden cardiac arrest in 1) EDs, wards, and intensive care units of five university hospitals and 2) all locations outside hospitals in two midsized cities. Of 126 patients discharged alive, 30 died before they could be interviewed. Of the 96 patients remaining, 86 (90% of available patients, 68% of survivors to discharge) completed the interview. Quality of life was assessed with the Health Utilities Index Mark 3, which describes health as a utility score on a scale from perfect health (equal to 1.0) to death (equal to 0.) Results: Mean age (±SD) of interviewed survivors was 65 ± 14 years, and 47 (55%) were male; mean time between collapse and initiation of CPR was 2.2 ± 2.6 minutes. Mean utility was 0.72 (±0.22). Utilities were significantly higher among patients who had a shorter duration of resuscitation (mean ? 0.81 for those who received less than 2 minutes of CPR, 0.76 for those who received 3 to 10 minutes, and 0.65 for others, p ? 0.05, r²? 0.07). Mean utilities of survivors were worse than those of the general population (mean ? 0.85 ± 0.16, p < 0.01) and those whose activities were not limited by chronic disease (mean ? 0.91 ± 0.08, p < 0.01). Conclusions: Although overall survival was poor, most survivors had acceptable health-related quality of life. Therefore, concerns about poor quality of life are not a valid reason to abandon efforts to improve the health care system's response to victims of sudden cardiac arrest. Further research is necessary to identify effective strategies for improving both survival and quality of life after cardiac arrest.     

Is Health Related Quality Of Life of people living with chronic conditions related to patient satisfaction with care?

More than 50% of people over the age of 30 live with at least one chronic condition that influences their Health Related Quality of Life (HRQOL). No uniform framework for conceptualization of HRQOL is currently recognized, although several important domains have been identified. Recently, satisfaction with care has been suggested as an important component to be included in the measures of HRQOL. Purpose: The objective of this review is to explore what is known from the literature about the relationship between satisfaction with care and HRQOL in patients living with chronic conditions. Methods: A scoping review methodology guided this work. Results: The results support the observation of a positive correlation between satisfaction with care and HRQOL; however, the directionality of the relationships could not be established. Although change in the way we organize and provide treatment might not be expected to lead to a significant change in functional performance of the individuals, we can potentially affect people’s perception of disability, and improve their control and coping with the illness. Conclusions: The review highlights the importance of using appropriate and psychometrically sound measures when assessing HRQOL. Studies are needed that explore longitudinally the relationships between the care experiences and HRQOL.

Implications for Rehabilitation

HRQOL and satisfaction with care

• Supportive relationships and good communication with health care providers can be expected to ease some of the burden and stress experienced by people living with and managing chronic conditions.

• The results of this scoping review support the observation of a positive correlation between satisfaction with care and HRQOL, however, the directionality needs further investigation.

• When looking for an outcome measure, it is important to consider what attributes the tool was designed to assess, and whether its content and properties are applicable to one?s clinical/research interest.

     

Does ICD Indication Affect Quality of Life and Levels of Distress?

The implantable cardioverter defibrillator (ICD) is the treatment of choice for life-threatening arrhythmias, with ICD indications having recently been extended to include primary prophylaxis. Despite the medical benefits of the ICD, there is an ongoing debate as to the impact of the ICD on patients' lives, particularly whether primary prophylaxis implantation may impact adversely on patient-centered outcomes such as quality of life (QoL) and distress. We examined the evidence for a role of ICD indication on these patient-centered outcomes. A literature search was conducted on PubMed and Web of Science from 2002 to present, focusing on indication for ICD therapy and patient-centered outcomes (i.e., anxiety, depression, disease-specific, or general QoL). We identified five studies (seven articles) concerning the impact of indication on patient-centered outcomes. Sample sizes varied from 91–426 patients across studies, five of seven articles used a prospective design, and follow-up ranged from 2–12 months. No study reported an effect for indication on patient-centered outcomes. There is no evidence to suggest that patients receiving an ICD for primary prophylaxis have subsequent poorer QoL and greater distress than patients receiving an ICD for secondary prophylaxis. This knowledge may help cardiologists in the clinical management of patients, in particular when discussing ICD implantation with patients.     

From the generic to the condition-specific?: Instrument order effects in Quality of Life Assessment

BACKGROUND: Generic and condition-specific measures of quality of life are often used in parallel. Despite extensive evidence of question ordering effects in the general survey literature, there is no consensus on which type of measure should be administered first and little previous conclusive research into instrument ordering effects. OBJECTIVES: To investigate the effects of instrument ordering on response rates, speed of response, and response patterns to questions on health-related quality of life. RESEARCH DESIGN: Subjects were randomized to two different versions of a self-completion questionnaire; in the first, condition-specific measures of quality of life preceded generic instruments; in the second version, the relative positions were reversed. SUBJECTS: Adults with asthma or angina from 62 family practices in northeast England. MEASURES: Instruments were the generic Medical Outcomes Study Short Form 36-item questionnaire, the EQ-5D, the Newcastle Asthma Symptoms Questionnaire, the Asthma Quality of Life Questionnaire, and the Seattle Angina Questionnaire. Effects were assessed in terms of questionnaire response rates, speed of response, item nonresponse rates, internal consistency, and domain scores on the quality of life measures. RESULTS: Instrument ordering had no effect on questionnaire response rates or response speed. Only condition affected item nonresponse rates. Some ordering effects in respect of quality of life scores were observed, but these were inconsistent within and between conditions, and none of the differences were clinically significant. CONCLUSIONS: There is little effect of instrument ordering on responses to self-completed measures of quality of life. Further research is required to test whether this finding extends to other methods of administration.     

Is the Ability to Maximally Activate the Dorsiflexors in Men and Women Affected by Indwelling Electromyography Needles?

Brown RE, Bruce SH, Jakobi JM. Is the ability to maximally activate the dorsiflexors in men and women affected by indwelling electromyography needles?ObjectivesTo determine whether maximal force is similar between conditions with and without a microelectrode, and to evaluate potential sex differences when using invasive procedures.DesignCrossover trial.SettingUniversity laboratory.ParticipantsYoung men (n=8; mean ± SD age, 20.3±2.0y) and young women (n=8; mean age ± SD, 19.8±0.4y).InterventionsNot applicable.Main Outcome MeasuresSubjects randomly performed 5 ankle dorsiflexion maximal voluntary contractions (MVCs) with an indwelling microelectrode in the tibialis anterior and 5 MVCs with the twitch interpolation technique without a microelectrode. Strength and contractile properties were measured. No visual or oral feedback was provided. When the greatest MVCs from each condition differed by more than 5%, 3 additional attempts were given with feedback in the lesser of the 2 conditions.ResultsMen were ～39% stronger than women, and contractile properties were ～11% faster, but maximal voluntary activation was similar between sexes (～95%). However, in men and women, the greatest MVC did not differ between the microelectrode and activation conditions (P=.87). In 9 of the 16 subjects, MVC was about 5% less in 1 of 2 conditions. Five of these 9 subjects were able to match or exceed their highest MVC with the aid of visual feedback.ConclusionsThis suggests that muscle strength and contractile properties differ between men and women. Indwelling microelectrodes do not hinder the ability to achieve MVC, but adequate feedback is necessary to achieve the highest force.     

Is Satisfaction a Valid Concept in the Assessment of Quality of Life of People with Intellectual Disabilities? A Review of the Literature

The present review examines the definitions of quality of life (QoL) which have developed over the past 3 decades and which reflect the increased awareness of the need to take into account individuals' own perceptions of their life. The concept of satisfaction is frequently used as an important subjective variable in QoL studies, despite the evidence of stability of satisfaction over individuals and over time, which suggests that it should be a measure insensitive to change. This evidence is examined and the idea of such stability being an adaptive psychological mechanism is considered. The use of satisfaction as a measure of QoL in people with intellectual disabilities (IDs) is discussed. The methodological difficulties encountered in assessing the subjective experiences of people with IDs are also discussed. Finally, it is argued that there is a strong argument for the abandonment of measures of QoL in general, and subjective ones in particular, for people with IDs. An alternative approach is suggested.     

‘Meaningful Communication': can it enhance the Quality of Life?

In treating malignant disease it often seems that the medical profession is primarily concerned with affecting cure or prolonging life, athough it is clear that both the disease, and its treatment, may profoundly affect the patient's normal lifestyle and have a significant effect on the quality of life (QL). Yet the current emphasis on total patient care means that it is no longer enough to be concerned only with the physical aspects of care; the psychosocial effects of disease are becoming increasingly important. Consideration of the patient's QL is a legitimate part of care and interventions can be designed to help the patient to incorporate changes in his physical state into his normal lifestyle. This paper discusses the concept of quality of life and explores the benefits of 'meaningful communication' (education and supportive counselling) in terms of the relief of stress and anxiety. It considers the effects of such communication on the quality of life of affected patients. It is suggested that the latter can be significantly improved through communication.     

Understanding and Assessing the Impact of Alcoholism on Quality of Life: A Systematic Review of the Content Validity of Instruments Used to Assess Health-Related Quality of Life in Alcoholism

Alcoholism has the potential to impact on the quality of life (QOL) of an 'alcoholic,' their family, and friends in both the short and long term. Consequently, increasing significance has been placed on understanding health issues from the patient's perspective, evaluating the patient's subjective experience of his/her symptoms (as well as any treatment), and the impact of these on his/her QOL.The objective of this review was to identify and evaluate the content validity of measures used to assess health-related QOL (HR-QOL) in alcoholism (alcohol abuse and alcohol dependence).Systematic searches of Scopus (1990-2007) were conducted using terms synonymous with alcoholism combined with terms associated with measuring HR-QOL. A total of 618 abstracts were identified, detailing the use of 16 generic patient-reported outcome measures to assess HR-QOL in alcoholism. Upon further examination of item content, seven measured generic health status and nine assessed generic QOL or life satisfaction (with varying definitional criteria and domain focus).The SF-36 and EQ-5D, in particular, have been used widely, but were misinterpreted frequently as measures of HR-QOL rather than health status. One alcohol-specific measure was identified: the AlQoL 9, a scale that some have claimed to epitomize alcohol-related QOL. However, the AlQoL 9 was developed by reducing the SF-36 (French version) to the nine items most relevant to alcoholism. The methodology for determining the relevance of the existing items of the SF-36 was comprehensive but the adapted measure does not include assessment of additional concepts (such as sleep and social isolation) of particular importance for alcohol-related QOL.There is a lack of research and assessment of HR-QOL in alcoholism and alcohol abuse, and our assessment of the content validity of existing measures used to date suggests that many are likely to be inadequate. Given the insufficiencies of generic measures and the limited applicability of the AlQoL 9, there is a need for an alcoholism-specific QOL measure that focuses on the domains that are most salient to people with such problems. Individuals need to be given the opportunity to determine the extent to which their QOL is impaired by alcoholism based upon their own criteria for what constitutes good HR-QOL. Only then will we be able to assess the full impact of alcoholism (and its treatment) on QOL.     

Do Glucagon-Like Peptide-1 Analogs Affect Diabetic Compliance and Quality of Life?

The major difficulties with diabetic treatment root in self-management, patient tolerance, and compliance with treatments. A new medication class, glucagon-like peptide-1 (GLP-1) analogs, has evidence of combining weight loss and glucose control with minimal side effects and cardiovascular benefit. For years, the standard therapy was adding insulin for patients with suboptimal response to oral agents. This method takes advanced education and lifestyle modifications to elicit adequate response. New injectable options allow initiation of a simpler regimen. The focus of this systematic review is to evaluate available evidence about the effect of GLP-1 analog therapy on patient compliance and quality of life.