ASSESSMENT OF POMS
The 36-Item Short Form Health Survey (SF-36) was the most commonly used generic measurement tool in both CR and PR; in fact, it was the most commonly used POM in the cardiac literature. In the PR literature, the SF-36 ceased to be used after the study by Jones et al.18 Instead, the respiratory literature changed to using disease-specific instruments with the development of improved instruments, such as the COPD Assessment Test and the Clinical COPD Questionnaire. Compared with the disease-specific instruments in the CR and PR setting, the generic instruments and many domains of the generic instruments were less responsive to change in health status.
In the PR literature, the disease-specific Chronic Respiratory Questionnaire (CRQ) was the most frequently used instrument, with the consensus being that in the domain of dyspnea and fatigue, the CRQ (in particular, the self-administered form) is more responsive to change in health status than the St George's Respiratory Questionnaire.19,20 The most commonly used purpose-specific instrument in PR was the Feeling Thermometer.21
The most commonly used disease-specific tool in the CR literature was the MacNew QoL after Myocardial Infarction (MacNew). This instrument is responsive to CR in most domains; however, it shows a greater treatment effect in the short-term than in the long-term.13 The most commonly used purpose-specific instrument in CR is the Hospital Anxiety and Depression Scale (HADS). This instrument for patients with higher measured values in the domains of anxiety and depression shows good responsiveness; however, for patients whose measured values are in the lower ranges of anxiety and depression, this instrument shows little significant change and, therefore, is less responsive.
Eleven of the review articles specifically assessed and compared POMs in both CR and PR (see Supplemental Digital Content 1, available at: http://links.lww.com/JCRP/A100). Several studies performed correlations across instruments, but the most consistently significant correlations were in the dyspnea domains between the purpose-specific instruments, such as the Medical Research Council Scale and the CRQ and St George's Respiratory Questionnaire in PR and between the MacNew Physical domain and the SF-36 Physical Composite (PCS) domain in CR.
This group of articles found that the Global Mood Scale, a purpose-specific instrument based on a 2-factor model of mood with 10 negative and 10 positive mood terms was the most responsive instrument in the CR setting.22 The domain construct for this instrument is very different to that of the HADS since the Global Mood Scale provides information on global well-being whereas the HADS assesses clinical states and was developed in a hospital setting. The veteran's version of the SF-36 (SF-36V) was found to be more responsive than the usual version of the SF-36. The SF-36V uses a 5-point ordinal choice instead of the usual dichotomous yes/no answer.23
An overall assessment of the literature reveals that CR and PR in the outpatient setting bring about a change in health status for patients and that there is overall an improvement in the QoL for most patients in this setting. But the question that this review poses is how successfully existing POMs go about measuring this, and it is evident that there are many problems in this area.
Many of the review studies were not consistent in their determination of responsiveness or effect size and this made comparison of POMs across studies difficult. For each new set of circumstances (ie, population), it is important to test the POM for responsiveness. Even if an instrument is reliable, it remains to be shown that differences in response to treatment can be detected before the instrument can be used for the assessment of change.24
The literature revealed a range of recommendations of which instrument (generic, disease-specific, or purpose-specific) is best used in CR and PR.25 Generic instruments often provide a broad picture of health and allow comparison of trial patients to population norms.26 They are often more sensitive to comorbidities, an important consideration when choosing an instrument to use in CR and PR. An assessment of a global concept of QoL may be useful in population studies; however, they may be difficult to interpret at a clinical level. Highly standardized POMs such as the SF-36 may also omit aspects of QoL that are of great importance to the individual.27
Existing generic instruments may have more of a rehabilitation focus. The SF-36, created in the 1980s, is an example of this type of instrument and is a multipurpose health survey with 36 questions. The 8 health concepts for the SF-36 were selected from 40 included in the Medical Outcomes Study published by Stewart and Ware in 1992,28 although most of the items for the SF-36 were taken from concepts already in existence in POMs from the 1970s and the 1980s.
Rehabilitation has had a paradigm shift since the 1980s model, which was originally proposed by Nagi Wood for the World Health Organization. This model was based on a “consequences of disease” classification, which focused on the impact of diseases or other health conditions that may follow as a result.29 This model has since been superseded by the International Classification of Functioning, Disability and Health (ICF-2001), in which the patient is instead seen in terms of his or her function, especially at the person and societal levels.30
Disease-specific measures were more widely used in the pulmonary literature. These instruments are more sensitive to the disorder under consideration and are therefore more likely to reflect clinical changes. They appear to be more useful in RCTs as they detect small but significant change even though these studies often use smaller or more moderate sample sizes. They are also better used for the specific population for which they were created.
Purpose-specific instruments such as the HADS also have a role to play and are often used to supplement and fill the gaps between generic- and disease-specific instruments. To cover all the domains in CR or PR that the clinician or researcher requires, often a number of POMs are needed (ie, generic, disease-specific as well as purpose-specific instruments). An example of this is the MacNew, which loses some of its discriminatory power at the end of the CR period and, therefore, it is best to compliment the MacNew with other psychosocial assessment instruments.31
The purpose of the POM is the best determinant for which type of instrument to use. Patient outcome measures that are successful in a research setting may not always translate into a clinical setting and vice versa. Instruments that are clinically relevant and have a medical (organ function) focus, which emphasizes signs, symptoms, and diagnosis, may not translate to a rehabilitation focus (such as CR and PR), which emphasizes function at the person and societal level.32
Self-report or individualized POMs were not included in any of the review literature. They were, however, used with some success in 2 articles on generic chronic disease rehabilitation.25,33 A large number of POMs reflect the objective perspective of the outsider rather than the patient's subjective point of view. Individualized methods focus on uniqueness (ie, the QoL is determined by the person who lives it).27
In the search to find a “gold standard” POM for use in CR and PR, the surveyed literature instead revealed a diversity of opinions and several instruments were proposed with a preference for the disease-specific instruments. While most of these are sensitive to the disease process, not all domains or all instruments are responsive to longitudinal change in health status brought about by CR and PR.
Current studies of CR and PR programs utilize generic, disease-specific, and purpose-specific POMs or a combination of these instruments. In CR and PR programs, symptoms and signs of organ dysfunction may show very little related to mapping a patient's progress. These tools have some drawbacks but the main issue for the patient is that, for all these instruments, an external investigator has determined the domains. Instead, the patient's own perceptions of his or her health status may prove to be more meaningful.25 A tool that utilizes the patient's own perceptions and weights aspects of that life which are particular to the person may prove to be more responsive in this setting.27,32,33
This research was supported by an Australian Government Research Training Program (RTP) Scholarship.
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