Quality of Life and Health-Related Issues

Introduction

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.