Quality of life tools for spinal cord–injured people

Introduction

From the second half of the last century, advances in the study and medical care aimed to help people with spinal cord injury (SCI) have resulted in greater life expectancy in this population ( ). SCI sequelae are well known, as well as other specific associated medical problems that these patients have to overcome, which frequently interfere with everyday life. Likewise, people with SCI require specific equipment to enable the integration into their social and home environments and adapt to daily life, i.e., from mobility devices to incontinence products, as well as help from other people for basic activities of daily living (ADL). All these circumstances cause great psychological pressure with which they have to live and result in comorbidities, e.g., anxiety, depression, distortion of body image, self-esteem, sense of failure, etc.

Moreover, there are different barriers that interfere particularly with the quality of life (QOL) of people with disabilities ( ). In 2001, after various periods of study and reflection on models for evaluating people with distinct functional capabilities, the World Health Organization (WHO) developed the International Classification of Functioning (ICF) (WHO: https://apps.who.int/iris/handle/10665/42407 ) that addresses the medical condition from a biopsychosocial perspective and seeks to integrate a person’s functional capacity with the execution of activities and social participation ( ).

However, despite the work done, there is no agreement in the scientific literature on the concept of QOL to be studied in handicapped people and/or with chronic diseases, as in the case of this population ( ; ). In their assessment, researchers additionally need to define the concept of health, which affects the daily life of the people subject of study.

Since the establishment of the concept of health by the WHO in 1947, “ a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity ”, QOL was correlated to states of subjective well-being, although later, some objective aspects were included ( ).

Thus, the definition of quality of life in medicine and in psychology has been the subject of controversy on many occasions. On the one hand, a subjective approach is adopted by the person subject of study, in which there should be a consistency between the person’s expectations and achievements to perceive satisfaction in their lives. On the other hand, there is an objective approach in which case the observer establishes certain parameters that characterize a satisfactory QOL from different points of view ( ) ( Fig. 1 ) one of them being the medical condition considered by the researcher ( ; ).

If we consider the previously exposed ideas, different angles can be used when assessing QOL in people with SCL: subjective assessment of QOL by the person ( ), its interrelation with the social environment in which the person lives, physical components—mainly impairments due to physical sequelae—mood, overall health status, or by specifying the difficulties in the management or assumption of system dysfunction that affect having a satisfactory social life—family-related, work-related, and education.

Definitions: Quality of life and health-related quality of life

QOL is a multi-dimensional concept that includes subjective and objective factors, for which reason it is defined differently in each academic field, social group, or individuals. In fact, the WHO defines QOL as “ individual’s perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards, and concerns ” ( ). This conveys a subjective view linked to the social context.

For an integrative assessment of QOL, an approach from a variable number of dimensions or domains is accepted, each of which refers to an area of vital aspects that differs from the others ( ). To complete the definition of health proposed by the WHO, at least three dimensions are included: physical function, mental state, and ability to have social interactions ( ), which are usually found in the instruments that measure QOL from a subjective view by the affected person and the objective perspective of the observer.

Thus, approaching QOL in medicine is easily associated with the concept of health-related quality of life (HRQOL), which according to Dijkers is part of an objective view and makes reference to those components in the person’s QOL directly or indirectly affected by the disease, lesions, and treatment side effects ( ), for which reason the “medical condition” of the person is included, as pointed out by .

On a higher level, the interaction of the health domains with the ability to interact with the surroundings and function of the person is contemplated in the structure of the ICF ( ).

Implementation in the study of quality of life in people with spinal cord injury

Defining the concept of QOL and its assessment from an objective view is subject of discussion and lack of agreement between researches ( ), due to the complexity of SCI physical sequelae, along with the outcome of rehabilitation and evidence that people with SCI may enjoy a full life integrated in their social environment. The instruments are usually developed based on values imposed on the participants, and sometimes there is little relation between the values communicated by the concerned individuals and those believed to be relevant by the researches and even by the caregivers ( ). As stated by Tate ( ), subjects affected by SCI distinguish between having spinal cord injury–related sequelae and their health status (“I am healthy”).

For this reason, the impact certain sequelae have on various QOL domains is examined in instruments assessing HRQOL in people with SCI-related sequelae, along with the assessment of global QOL, the latter form a subjective view as it can only be determined by the affected person ( ).