Advances in medical care have increased the life expectancy, and the ultimate goal of health care now is to improve, restore, or preserve quality of life (QOL). As QOL is affected by a variety of medical and nonmedical factors, the term health-related quality of life (HRQoL) was introduced to narrow the focus to the effects of health, illness, and treatment on QOL. HRQoL is a particularly important issue for neurosurgical patients especially those with brain tumors, stroke, and traumatic brain injury. Many validated and reliable questionnaires are available for the assessment of HRQoL, and they are used as a clinical prognostic factor and an end point for clinical trials. In the future, measurements of HRQoL should be incorporated as part of the standard of care in neurosurgical patients.
KeywordsHealth-related quality of life, Neuro-QOL, Neurosurgical patients, Quality of life, Short Form-36, Subarachnoid hemorrhage, Traumatic brain injury
Quality of Life and Health-Related Quality of Life 963
Utility of Health-Related Quality of Life 964
Tools for Measuring Health-Related Quality of Life 964
Combined Instruments for Patient-Reported Outcomes 965
Uses of Measuring Health-Related Quality of Life 965
Health-Related Quality of Life in Relation to Neurosurgical/Neurological Conditions 965
Neuroquality of Life 966
Quality of Life After Brain Injury Overall Scale 966
Health-Related Quality of Life After Traumatic Brain Injury 966
Health-Related Quality of Life After Subarachnoid Hemorrhage 966
Health-Related Quality of Life in Patients With Brain Tumors 967
Acute and chronic diseases with a relapsing and remitting course often produce a substantial impact on the function and the quality of life (QOL). One of the important outcome measures after a serious illness or its treatment has been the length of survival. As medical and surgical advances have led to better treatment of existing diseases, many patients are living longer and the ultimate goal of health care now is to improve, restore, or preserve QOL. QOL encompasses broad concepts that affect global life satisfaction, including good health, housing, personal and family safety, education, and employment. When QOL is considered in the background of health and disease, it is commonly referred to as health-related quality of life (HRQoL). HRQoL is more focused on aspects of QOL that are directly influenced by one’s health status. This includes symptoms of disease, satisfaction, and side effects of treatment, physical, mental, and emotional well-being and finally social functioning. HRQoL is becoming an important health outcome indicator and there has been an increase in the number of studies using HRQoL as a patient-reported outcome. HRQoL is a particularly an important issue for neurosurgical patients especially those with brain tumors, stroke, and traumatic brain injury (TBI). The aim of this chapter is to provide an overview on the general concept of HRQoL with a specific focus on the neurosurgical patient population.
Quality of Life and Health-Related Quality of Life
The term “quality of life” has a different meaning for nearly everyone and every academic discipline. The World Health Organization (WHO) defines 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.” It is a broad multidimensional concept that usually includes subjective evaluations of both positive and negative aspects of life. Among important domains of overall QOL (e.g., jobs, housing, schools, the neighborhood), health is one of the important domains.
As QOL is affected by a variety of medical and nonmedical factors, the term HRQoL was introduced to narrow the focus to the effects of health, illness, and treatment on QOL. HRQoL can be defined as “The extent to which one’s usual or expected physical, emotional, and social well-being are affected by a medical condition or its treatment.” HRQoL is related to both self-reported chronic diseases (diabetes, breast cancer, arthritis, and hypertension), and their risk factors (body mass index, physical inactivity, and smoking status).
Utility of Health-Related Quality of Life
The idea of HRQoL rests on a concept of health as well as of QOL. In many chronic medical conditions, the main focus of the treatment has been on the symptom management and/or preventing the disease progression. Traditional measures of outcome do not represent the full impact of the underlying medical condition and their treatments. The impact on QOL may vary from patient to patient, and it is the patient who ultimately decides what an acceptable outcome is. Acceptable outcomes are very dependent on the nature of the underlying disease process, the wishes and expectations of the patient, and the point in the time course of the disease in which the patient finds himself or herself. The patient’s perception of his or her outcome can also be adversely affected if family or caregivers do not share the same expectations. HRQoL represents a subjective appraisal of the impact of illness or its treatment; individual patients with the same objective health status can report dissimilar HRQoL due to unique differences in expectations and coping abilities.
Measuring HRQoL can help monitor progress of disease, as well as can identify subgroups with relatively poor HRQoL and help to guide interventions to improve their situations and avert more serious consequences. In addition, the use of measures of HRQoL has proved to be beneficial for the patient–health professional encounter and communication. Patients are also reported to feel more empowered because the use of HRQoL measurements encourages them to reflect upon their situation, thereby increasing self-awareness.
Tools for Measuring Health-Related Quality of Life
HRQoL incorporates the two important aspects of QOL, namely, subjectivity and multidimensionality. Whenever possible, HRQoL should be a self-reported (patient-reported) instead of observer-reported (caregiver or health care professional) measure. For a measure to have clinical usefulness it must not only be valid, appropriate, reliable, responsive, and capable of being interpreted, but also be simple, fast to complete, easy to score, and provide useful clinical data.
Most HRQoL scales today measure seven basic dimensions of life quality: physical concerns (e.g., pain); functional ability; family, social, and emotional well-being; treatment satisfaction; sexuality/intimacy (including body image); and social functioning. HRQoL-measuring instruments can be generic or disease specific. Generic instruments have the advantages of being applicable to all persons irrespective of their type or number of illness. They include generic health status instruments and generic illness instruments. Generic scales are not sensitive to a patient’s changing clinical status and do not necessarily focus on specific outcomes for a particular disease. Disease-specific scales or measures are responsive to clinical changes and thus are perceived as more clinically relevant.
Generic health status : Generic health status instruments are applicable to all subjects both with and without medical illness. Data from healthy population can be used as control data in addition; these questionnaires can provide a comparison across diverse groups such as young and old, or different ethnic groups. The Nottingham Health profile (NHP) and the Medical Outcome Study Short Form-36 (SF-36) are some of the examples of general health status questionnaires.
Generic illness : Generic illness instruments are applicable to all subjects with any medical illness, or condition. These questionnaires are useful in comparing different illnesses, severity of the illness, and also the effect of different interventions. In addition, these instruments are particularly useful to assess the individual patient’s situation, in particular functional limitations of the illness. In addition, a generic illness instrument maybe more useful than a disease-specific instrument in patients with multiple diseases. Examples include Quality of Well-Being Index, the Sickness Impact Profile, EuroQol Index (now EQ-5D), Functional Assessment of Chronic Illness Therapy (FACT), and Karnofsky Performance Status Scale.
Disease-specific measures : These instruments focus on the HRQoL of individuals with specific illnesses (e.g., diabetes, stroke, cancer), specific types of treatment (e.g., chemotherapy, lung transplant, palliative care), or specific symptoms (e.g., nausea, urinary incontinence). Compared to other types of instruments, these measures are more specific to some problems unique to particular diseases and are also likely to be more sensitive to specific treatment-related changes in HRQoL. Examples include the Diabetes Quality of Life instrument, the Functional Living Index—Cancer, the Functional Assessment of Cancer Therapy-General-7, Stroke Specific Quality of Life scale, Functional Assessment of Multiple Sclerosis, Unified Parkinson’s Disease Rating Scale, and Quality of Life in Epilepsy-31.
Combined Instruments for Patient-Reported Outcomes
HRQoL is a multidimensional concept, and different aspects of quality need different methods of measurement. However, the choice of instrument should always depend on the context in which it is to be used. Sometimes a combination of generic and disease-specific HRQoL measures may be more appropriate for monitoring changes in a patient’s health status due to intervention. One of the examples of the combined instruments is the Patient-Reported Outcomes Measurement Information System ( www.nihpromis.org ).
Uses of Measuring Health-Related Quality of Life
Information regarding the impact of an illness or medical condition on HRQoL can be put to use in several ways.
To estimate burdens of different diseases : Health status instruments can be used to assess the impact of different diseases on HRQoL.
End point in clinical trials : Generic (health status and health utility) and disease-specific measures complement each other as measures of HRQoL in clinical trials. Clinical trials that compare two (or more) treatments often include a HRQoL analysis as one means of determining overall clinical benefit, particularly when treatment side effects are considerable. As an example, improvements in HRQoL are one of two potential benefits that were considered by the United States Food and Drug Administration for the approval of new anticancer drugs. HRQoL measures are also a powerful predictor of mortality after adjusting for sociodemographic and clinical features.
Planning tools for future clinical care : HRQoL represents a key outcome in acute and chronic diseases. HRQoL can be used as a planning tool for assessing the need for further treatment, rehabilitation, or palliative care. It provides a detailed assessment of disease and treatment effects, and their impact on the individual’s daily life. HRQoL measurement may reveal the impact of anxiety or depressive symptoms, or a complaint of pain or dyspnea on well-being, which may initiate patient–physician communication about medical, psychological, or social interventions to improve the patient’s well-being. HRQoL is a particularly important issue for patients who are in the advanced stages of a serious life-threatening illness. Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible QOL for patients and their families facing serious illness.
Health-Related Quality of Life in Relation to Neurosurgical/Neurological Conditions
The concept of HRQoL in neurological/neurosurgical patients can be defined as the extent to which one’s usual or expected physical, emotional, and social well-being are affected by a neurological condition or treatment. Two commonly used HRQoL measures with a neurological focus include Neuro-QOL and the Quality of Life after Brain Injury Overall Scale (QOLIBRI-OS).
Neuroquality of Life
Neuro-QOL is a set of self-report measures that assesses the HRQoL of adults and children with neurological disorders (Neuro-QOL, www.neuroqol.org ). Neuro-QOL instruments were developed through a collaborative, multisite National Institute of Neurological Disorders and Stroke–sponsored research initiative to construct a psychometrically sound and clinically relevant HRQoL measurement tools for individuals with neurological conditions (e.g., stroke, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson disease, epilepsy, and muscular dystrophy). Neuro-QOL is composed of item banks and scales that evaluate symptoms, concerns, and issues that are relevant across disorders (generic measures) along with targeted instruments that assess areas most relevant for specific patient populations with specific disease.
Quality of Life After Brain Injury Overall Scale
The Quality of Life after Brain Injury scale is a newly developed instrument that provides a brief summary measure of HRQoL (QOLIBRI, www.qolibrinet.com ). The QOLIBRI provides a comprehensive tool (37 items) to investigate HRQoL in areas typically affected by brain injury. It has excellent psychometric properties, available in more than 25 languages.
Health-Related Quality of Life After Traumatic Brain Injury
TBI is a heterogeneous condition that encompasses a broad spectrum of HRQoL measures. The SF-36 is the most widely used HRQoL instrument to estimate QOL in patients with TBI. Decreased HRQoL has been reported both during and after the first year of TBI. In patients with TBI, physical and emotional role limitations (role physical, role emotional) domains had the lowest scores in the SF-36. TBI has more negative impact on the mental HRQoL than on the physical HRQoL. The assessment of general HRQoL in patients with severe TBI with cognitive impairments is difficult. HRQoL measures should be used with caution in these patient groups. More research is needed to see how HRQoL measures could be modified for people with severe brain damage and cognitive impairments. In addition, for patients who cannot self-report on their HRQoL, proxy ratings can be helpful; however, one must take into account that this may not be similar to self-reported HRQoL. Hence, self-report and proxy report should be considered as complementary sources of information and not an alternative report.
SF-36 is currently the most widely used instrument to assess HRQoL after TBI. However, the SF-36 has some limitations in its application in patients with TBI. The SF-36 may not be sensitive enough to detect key issues in patients with a TBI, such as cognitive dysfunction, severe physical restrictions, or psychological problems such as anxiety, depression, memory, and the disturbances in concentration.
The recently developed TBI-specific HRQoL instrument, the QOLIBRI looks promising. An international validation study has recently been published showing that the QOLIBRI is a valid instrument in TBI population and that it provides additional information to that obtained by the SF-36.
In 2002, an international group of clinicians and QOL experts made several recommendations for future research of QOL in patients with a TBI. It was recommended that the HRQoL assessments should take place in the early phase of rehabilitation (i.e., within 1 year after trauma) as well as in the postrehabilitation phase but not on admission to the hospital. Self-report should be preferred to proxy report. Furthermore, the expert group recommended that the assessment of HRQL include both a generic and condition-specific instrument. Therefore, using a generic measure (SF-36) with a disease-specific measure (QOLIBRI) is recommended.
Health-Related Quality of Life After Subarachnoid Hemorrhage
Subarachnoid hemorrhage (SAH) accounts for approximately 5% of all strokes, occurs at relatively young age compared to those who have other stroke subtypes, and carries a poor prognosis for survival. The chance of a patient to survive an aneurysmal SAH is around 65%, and about half of the survivors regain independence for activities of daily life. Many of the latter group, however, cannot resume their previous work and experience cognitive impairments, mood disturbances, and a reduced QOL. Patients with SAH differ from patients with other types of stroke in demographic characteristics (younger) and clinical manifestation of their condition (fewer physical disabilities), so that it is important to study QOL outcomes in this diagnostic group.
Literature review shows that severity of clinical condition at admission, fatigue and depressed mood, physical disability and cognitive complaints, female gender and higher age, as well as passive coping are consistently related to worse HRQoL after aneurysmal SAH. Information about these determinants in an individual patients with SAH can be very important to tailor the rehabilitation program to the needs of this patient. However, whether focused interventions result in better HRQoL after aneurysmal SAH should be investigated in future studies. SF-36 and International Classification of Functioning, Disability, and Health model are mostly used for HRQoL assessment after SAH.
In patients who recover after SAH, structured screening of cognitive complaints and impairments, emotional problems, and personal factors is important to detect these problems and tailor the rehabilitation programs to the need of the individual patient with SAH.
Health-Related Quality of Life in Patients With Brain Tumors
Malignant brain tumors are one of the most feared diseases. The most common primary brain tumors are gliomas, originating from glial tissue, and because of their aggressive nature and the direct involvement of the central nervous system, they carry a significant morbidity and mortality with a serious impact on the patients and their social systems. Although the median survival time for patients with low-grade glioma (LGG) may well extend to about 10 years, for the high-grade glioma, it is usually 1–3 years. Despite intensive treatment with surgery, chemotherapy, and radiotherapy, tumor recurrence inevitably occurs in the vast majority of patients and they eventually die from the tumor progression. Combined radiation and chemotherapy along with other new treatment strategies not only may increase the duration of survival but also may have severe side effects. Therefore, the aim of treatment should consider not only the extended survival but also should carefully balance this against the side effects of treatments and their potential negative impact on functioning and QOL. Hence, the concept of HRQoL should be included as an outcome measure supplementing traditional endpoints such as (progression-free) survival time in clinical trials evaluating the effect of treatment. Measuring HRQoL emerged in the early 1990s in the medical oncology literature. In patients with brain tumor, however, it has long been a neglected issue. Since the beginning of this century, HRQoL has become a secondary outcome measure in a growing number of clinical trials evaluating glioma treatment.
The most commonly used HRQoL measurement tool in patient population with cancer is the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). This 30-item measure is designed to assess the HRQoL of patients with cancer. The EORTC QLQ-BN20 has been specifically developed and validated for patients with brain cancer. Both these tools are often used in clinical trials in patients with glioma undergoing chemotherapy and radiation therapy. Combined scores are then transformed into a linear scale (0–100) and ≥10 points difference in score is considered as clinically meaningful changes in a HRQoL parameter.
Another widely used (brain) cancer-specific HRQoL tool is the FACT. In addition to a general FACT module (FACT-G), a brain cancer–specific module was developed (FACT-Br) ( Fig. 62.1 ). Compared with the EORTC questionnaires, the FACT modules are more focused on psychosocial aspects and less focused on symptoms. An alternative recently developed PRO measure for patients with brain tumor is the MD Anderson Symptom Inventory Brain Tumor Module. This has been validated for patients with both primary and metastatic tumors.