Abstract
Improving an individual’s long-term quality of life should be the primary aim of ACL management. To fulfil this aim, we must assure that we accurately capture the impact of the ACL ruptured knee upon an individual’s quality of life. It is imperative that we consider any physical knee deficits in relation to the impact that they have upon an individual’s quality of life, in the context of their life priorities, values, expectations and goals. In this chapter, we describe the importance of measuring QOL in ACL ruptured individuals, discuss how to choose an appropriate QOL measure, highlight pitfalls in commonly used QOL measures and provide clinical recommendations for assessing QOL in ACL ruptured individuals. We also provide a summary of the literature on QOL after ACL reconstruction and non-operative management of ACL rupture.
Keywords
clinical recommendations, longer-term outcomes, non-operative, patient reported outcome measures (PROMS) management, patient-centered
What is Quality of Life?
The World Health Organization has defined quality of life (QOL) as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns . The concept of QOL encompasses the following three principles:
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QOL reflects an individual’s perceived discordance between their ideal or expected state and their current state and abilities.
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QOL is a subjective concept; interpretation is specific to the individual and dependent on a wide range of personal factors, including cultural, behavioral, psychological, environmental, and societal influences.
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QOL is a dynamic construct, which changes over time in line with the individual’s expectations, beliefs, circumstances, knowledge, and experiences.
Health-Related Quality of Life
Health-related QOL refers to the impact of an individual’s health on their QOL. It is subject to the same principles outlined previously.
Knee-Related Quality of Life
Knee-related QOL refers to the influence of an individual’s knee on their QOL. This is a useful measure following anterior cruciate ligament (ACL) injury, and it is influenced by a person’s surgical expectations and beliefs, and the impact of their knee on their ability to achieve their desires, goals, and ambitions. This impact depends on an individual’s life priorities and circumstances, which can change over time.
Keywords
clinical recommendations, longer-term outcomes, non-operative, patient reported outcome measures (PROMS) management, patient-centered
What is Quality of Life?
The World Health Organization has defined quality of life (QOL) as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns . The concept of QOL encompasses the following three principles:
- •
QOL reflects an individual’s perceived discordance between their ideal or expected state and their current state and abilities.
- •
QOL is a subjective concept; interpretation is specific to the individual and dependent on a wide range of personal factors, including cultural, behavioral, psychological, environmental, and societal influences.
- •
QOL is a dynamic construct, which changes over time in line with the individual’s expectations, beliefs, circumstances, knowledge, and experiences.
Health-Related Quality of Life
Health-related QOL refers to the impact of an individual’s health on their QOL. It is subject to the same principles outlined previously.
Knee-Related Quality of Life
Knee-related QOL refers to the influence of an individual’s knee on their QOL. This is a useful measure following anterior cruciate ligament (ACL) injury, and it is influenced by a person’s surgical expectations and beliefs, and the impact of their knee on their ability to achieve their desires, goals, and ambitions. This impact depends on an individual’s life priorities and circumstances, which can change over time.
Why should we Measure Quality of Life after Anterior Cruciate Ligament Reconstruction?
Arguably, improving a patient’s QOL should be the primary rationale for ACL reconstruction (ACLR). Every ACL-reconstructed patient has unique beliefs, ambitions, experiences, goals, and personal attributes. Such factors may explain variation in surgical outcomes and provide a rationale to shift toward more individualized, personalized patient-centered care. QOL measures can give context and meaning to objective measures that are commonly used to assess outcomes of ACLR. The impact of a physical impairment or symptom on an individual’s QOL should guide management strategies. ACLR can create physical and psychological trauma to an individual and has associated costs, risks, and complications. In order to weigh the risks, costs, and benefits, surgeons and patients must predict the likely impact of surgical ACLR on future QOL, well-being, and life satisfaction. Therefore information on long-term QOL following ACL rupture, and factors that may impact future QOL are of great value to both healthcare professionals and ACL-ruptured individuals.
How do we Measure Quality of Life Following Anterior Cruciate Ligament Reconstruction?
Patient-reported outcome measures are commonly used to measure QOL before and after ACLR. These measures can be generic, knee-specific, or ACL-specific. Generic, health-related QOL measures do not include knee-specific questions and have often been used in a range of populations with published results available for comparison. Knee-specific QOL measures ask questions pertaining to the knee, but are not specific to an ACL-ruptured population (e.g., validated for use in ACL, knee osteoarthritis, and meniscal pathology populations). Finally, ACL-specific QOL measures contain questions pertaining to the ACL-ruptured knee, and are most specific to this population. In Table 115.1 we outline the most common measures used to date, to measure QOL in ACL-reconstructed populations.
| Outcome Measure | Items/Domains | Considerations |
|---|---|---|
| Knee-Related Quality of Life | ||
| KOOS-QOL subscale | Comprises four questions addressing knee awareness, knee-related lifestyle modifications, knee confidence, and knee-related difficulties | Valid for use in ACL-ruptured individuals, high test-retest reliability in patients with knee injury (KOOS-QOL ICCs from 0.83 to 0.95) Has been used extensively in ACL-ruptured populations and many results are available for comparison Quick and easy to complete It is possible to experience increased knee awareness and make positive lifestyle changes without a negative impact on quality of life. (This would result in a poor KOOS-QOL score.) Patients who consider their current knee function to be satisfactory between 6 and 24 months after ACLR reported a mean KOOS-QOL score of 73 (95% CI 71–75). The Minimal Detectable Change in patients with knee injury is 21.1 points. |
| ACL-Specific Knee-Related Quality of Life | ||
| ACL-QOL | Contains 31 questions comprising five subscales (symptoms and physical complaints, work-related concerns, sports/recreation, lifestyle, and social and emotional) | Valid, responsive to change, and reliable for use in ACL-ruptured individuals The only measure devised with the purpose of assessing quality of life in an ACL-ruptured population Includes items most relevant and important to ACL-ruptured individuals, compared with other knee-related measures |
| Health-Related Quality of Life | ||
| SF-36 | Comprises 36 questions across eight health domains: bodily pain, general health, mental health, physical function, role emotional, role physical, social function, and vitality | Valid for use in ACL-ruptured individuals but may be subject to floor and ceiling effects in ACL populations The SF-36 is useful for measuring group changes over time after ACLR ; however, SF-36 subscales have low sensitivity to individual change after orthopaedic surgery. Extensive population norms are available from multiple countries and specific populations, including athletic populations. Can calculate a physical and mental summary component score |
| EQ-5D | Contains five questions addressing mobility, self-care, usual activities, pain/discomfort, and anxiety/depression Features an additional question addressing perceived overall health status measured on a VAS | Contains a VAS measure of self-perceived overall health status May not measure items of relevance or importance to ACL groups, potential for ceiling effect due to two of five items addressing self-care and walking mobility, and no reference to high-level activities |
How Do We Choose an Appropriate Quality of Life Measure?
A questionnaire should align with your treatment goals and measure factors of importance to the patient. The content of a questionnaire should be examined to enable the interpretation of findings. In some instances, domain or questionnaire titles may be misleading, and questions may not address issues of high importance to the individual patient. Secondly, assure the chosen measure is valid and reliable for use in ACL-ruptured individuals. If you are measuring treatment effect or change over time, the measure should be sensitive to change in an ACL-ruptured population. Additionally, published data on minimal clinically important difference/improvement or patient-acceptable symptomatic state can facilitate the interpretation of scores and change in scores over time.
Potential Limitations of Patient-Reported Quality of Life Measures in Anterior Cruciate Ligament-Ruptured Populations
The challenge in measuring QOL lies in its uniqueness to individuals. Many of the existing measures of QOL fail to take account of this by imposing standardized models of QOL and preselected domains; they are thus measures of general health status rather than QOL. Most patient-reported outcomes used in ACL-reconstructed populations contain restricted responses, which do not allow patients to rate the importance or impact of a physical impairment or activity limitation on their QOL. The ACL-QOL questionnaire contains items of highest relevance and importance; despite this, 25 of 31 ACL-QOL items were of little or no importance to ACL-ruptured individuals. (This was favorable to the 41 of 42 Knee Injury and Osteoarthritis Outcome Score [KOOS] items that were rated of little to no importance. 7 )
Comparison to Population Norms and Reference Groups
Most QOL measures can be compared with published population norms. However, a typical ACL-ruptured individual is more active than the general population at the time of injury. Higher physical activity levels and sport participation have been related to better health-related QOL scores. Therefore comparison to general population norms may underestimate QOL impairment in ACL-ruptured individuals, who may have better QOL compared with the general population, but lower QOL compared with their teammates. Some measures, such as the short-form 36 (SF-36), have athletic population norms available for comparison, which can aid the interpretability of results. Knee-related QOL scores from healthy populations free from knee pain or injury can be misleading, since greater impairment would be expected following ACL rupture compared with individuals with no knee problems.
Variability of QOL scores should be considered when comparing with individual scores. A mean score from an ACL-reconstructed cohort may not reflect different subgroups with high or low QOL scores. If an individual experiences persistent knee symptoms or functional impairments, the QOL is likely to be impaired compared with an average score reported from a group of patients, including those who are completely satisfied with their knee function and surgery.
What do we know about Quality of Life after Anterior Cruciate Ligament Reconstruction?
Quality of Life Within the First 5 Years of Anterior Cruciate Ligament Reconstruction
QOL is usually impaired in the acute injury and early postoperative periods, and it may persist until preinjury knee function is restored or the patient reaches a state of satisfaction or acceptance with the knee abilities. Most ACLRs aim to restore knee function free from pain, swelling, or movement restrictions, allowing unrestricted participation in desired activities. Some individuals experience persistent knee difficulties or fear of reinjury that impacts on their ability to return to desired activities. In these instances, this can create a mismatch between expectations, desires, and abilities, with negative impacts on QOL.
Within the first 5 years of ACLR, the average QOL scores reported for groups of ACL-reconstructed patients are impaired compared with healthy populations without knee impairments. Great variation in reported QOL limits the interpretation of these findings. What we can extrapolate from these studies are factors that were associated with poorer QOL outcomes in these individuals. An overview of the key findings in this area is provided in Table 115.2 .
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