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 ( ; ).

Dijkers’ Model of approach to quality of life. Approach to quality of life according to a “objective” or “Subjective” view, which shows various factors that influence the researcher’s perception in their social environment, or the individual’s and their subjective standards.

(With permission from: Dijkers MP. (2003) Individualization in quality of life measurement: instruments and approaches. Arch Phys Med Rehabil,84 Suppl 2: Fig. 1 , page S4.).

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 ( ).

Databases

There are numerous academic institutions and knowledge bases trying to cluster the different instruments for measuring abilities, sequelae, or dysfunctions, and their interaction with the subject’s life regarding physical aspects, function, mental, social, and of QOL in general. Concerning SCI, the SCIRE project ( ; www.scireproject.com ) is of great relevance. Revisions of the different fields of action are carried out in the project, and recommendations of different assessment instruments given, with regular updates, reviews on their validity, and diffusion in the medical literature. Likewise, numerous instruments for assessing health conditions secondary to SCI are found in the resources grouped in the Participation and Quality of Life Toolkit (ParQOL; www.parQOL.com ), but in this case, they are related with Dijkers’s QOL model and provide use and access instructions.

From a perspective focused on the person, the project developed under the auspice of the National Institutes of Health in the United States of America as of 2004, the Patient-Reported Outcomes Measurement Information System (PROMIS: www.healthmeasures.net ), groups numerous useful instruments for assessing different elements linked with HRQOL that have shown a correlation with aspects collected by the ICF ( ). The mission of PROMIS is to create a health model to transmit the health status communicated by the subject ( ), so that a global assessment on the person that is useful for the observer can be made compatible with the standards of the ICF. Its use in subjects with neurological disorders concentrates in Neuro-QOL ( ). A specific HRQOL for SCI is the SCI-QOL, inside the PROMIS project, that is undergoing validation with a large sample of persons with SCI in United States of America ( ).

However, the use of many instruments is complex in clinical practice, and consequently clinical researches focus on a limited number of them. When choosing a tool, we must consider which is the aspect of QOL we want to assess: the subjective perspective of the person, the relationship with the social and cultural environment, specific health domains, effect of a specific sequelae or dysfunction, comparison or not with other populations—either by cultural setting or different type of disability or function—specific validation for SCI or general, etc. ( ; ).

Several reviews of the instruments and methods used for assessing QOL in people with SCI have been done ( ) ( Tables 1 and 2 ).

Table 1

Objective QOL Instruments.

Reproduction of table showing the objective instruments of QOL according to MR Hill. Adapted with permission from: Hill, M., Noonan, V., Sakakibara, B. and the SCIRE research team. (2010). Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review. Spinal Cord, 48, 438–450.

Objective tools
Name	Description	Items	Domains (No. of questions)	Scoring and response	Measurement model	Time taken (min)	Alternative languages	Item bias	Interviewer (I) or self-administration
Patient reported impact of spasticity measure (PRISM)	Addresses negative and positive impact of spasticity on QOL in SCI population	41	Societal avoidance/anxiety (11); psychological agitation (5); daily activities (6); need for assistance/positioning (5); impact on activities +/− (4); need for intervention (5); social embarrassment (5)	5-point Likert scale Sub-scale scores are obtained by averaging item scores and dividing by number of items Higher is unhealthier	“Relative to the range of the scale, more persons scored in lower ranges (indicating less impact)”	Not available	None	Developed in SCI population	SA
Quality of well-being questionnaire-SA (QWB-SA)	Point-in-time preference measure designed to measure HRQOL	71	Symptoms and problems (58); mobility, physical activity, social activity (13)	0.0—death to 1.0—optimum health Higher is healthier	No floor and ceiling effects	< 20	Various	Face validity supports low bias	SA
Qualiveen	Disease-specific perspective on QOL in SCI for urinary disorders	30	Limitations (9); constraints (8); fears (8); feelings (5)	5-point Likert scales (0–4); total range 0–100 Tabulate total Higher is unhealthier	Minimal	Not available	Various	Developed in SCI population	I or SA
Sickness Impact Profile (SIP68)	Generic health status measure, measures health-related changes in behavior associated with the carrying out of daily activities	68	Somatic autonomy (17); mobility control (12); mobility range (10); social behavior (12); emotional stability (6); psychological autonomy and communication (11)	No = 0, yes = 1; total range 0–68 Yes responses are tabulated; can divide into SIPSOM, SIPPSY, SIPSOC sub-scales Higher is unhealthier	Ceiling effects MR (31.3%), ES (54%), & PAC (53.8%) domains	˜15–20	Dutch	Scoring on one question adjusted for SCI	I or SA
Short Form 36 (SF-36)	Addresses basic human values relevant to QOL and well-being through individual domains and two global components	36	Physical functioning (10); role limitations because of physical health problems (4); bodily pain (2); general health (5); vitality (4); social functioning (2); role limitations because of emotional problems (3); mental health (5)	Total range 0–100 Norm-based score is 50, with standard deviation 10. Can be divided into two summary scores: physical and mental, calculated by a system of + and − weights on domain scores Higher is healthier	Floor and ceiling effect PF (12.2%–24.2%; free—29.7%), RLP (28.1%–36.3%; 22.5%–54.4%); ceiling effect SF (free—33.5%), RLE (63.8%–75.3%)	< 15	Available in most major languages	Face validity supports low bias	I or SA
Short form 36 veterans/SCI (SF-36 V)	Version of SF-36 designed for use in the disabled population. Physical functioning section has been modified to accommodate SCI population	36	Physical functioning (8)	Each domain converted to range of 0–100 Divided into two summary scores: physical and mental components, are norm based; general population score 50 and standard deviation of 10 Higher is healthier	“Descriptive responses to the items showed a floor effect on many of the items”	Not Available	None	PF domain altered in SCI population	I or SA
Short form 12 (SF-12)	A shortened version of the SF-36, used in population studies	12	Physical functioning (2); role limitations because of physical health problems (2); bodily pain (1); general health (1); vitality (1); social functioning (1); role limitations because of emotional problems (2); general mental health (2)	Total range 0–100 Divided into two summary scores: physical and mental components, are norm based; general population score 50 and standard deviation of 10 Higher is healthier	Summary scores free of floor and ceiling effects	˜2–4	Available in most major languages	Face validity supports low bias	I or SA
Short form 6-disability (SF-6D)	A six-dimensional health state classification based on the SF-36	11	Physical functioning (3); role limitation physical (1); role limitations emotional (1); social functioning (1); pain (2); mental health (2); vitality (1)	0.29 (the worst health state)—1.00 (perfect or full health) Preference-based weights were assigned to each response; negative responses detract from perfect health score Higher is healthier	Floor effect PF (37%); ceiling effect RLP and E (55%), SF (50%), P (36%), MH (35%)	Not available	Available in most major languages	Face validity supports low bias	I or SA

 

Table 2

Subjective QOL Instruments.

Reproduction of the continuation of the table showing the subjective instruments of QOL according to MR Hill. Adapted with permission from: Hill, M., Noonan, V., Sakakibara, B. and the SCIRE research team. (2010). Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review. Spinal Cord, 48, 438–450.

Subjective tools
Name	Description	Items	Domains (No. of questions)	Scoring and response	Measurement model	Time taken (min)	Alternative languages	Item bias	Interviewer (I) or self-administration
Quality of life index (QLI)	Measures subjective QOL in terms of satisfaction	32–37	Health and functioning (8); social and economic (8); psychological and spiritual (8); family (8)	6-point Likert scales for both importance and satisfaction sub-sections Weigh satisfaction (S) scores with corresponding importance (I) scores; 3.5 subtracted from S scores, raw I score used. Total and sub-scale scores tabulated Higher is healthier	None	∼ 10	None for SCI version	SCI version evaluated by SCI patients	I or SA
Quality of life profile for adults with physical disabilities (QOLP-PD)	A holistic approach to QOL that empowers individuals in which elements of QOL are the same for people with and without disabilities, but each may address issues differently; questions address aspects of daily life	102	Being (32): physical, psychological, spiritual; belonging (37): physical, social, community; becoming (33): practical, leisure, growth	5-point Likert item scales 1—not at all satisfied to 5—extremely satisfied and 1—not important to 5—very important Weigh satisfaction and importance scores for each item; three points are subtracted from S scores, raw I scores used Higher is healthier	None reported	Not available	None	Developed in disabled and SCI population	I or SA
Satisfaction with life survey (SWLS)	Addresses life satisfaction as a whole, reflecting a global perspective of individual’s values	5	In most ways my life is close to ideal; the conditions of my life are excellent; I am satisfied with my life; so far I am getting the important things I want in life; if I could live my life over, I would change almost nothing	7-point Likert scale Global score is computed Higher is healthier	Floor effects seen on some items	< 5	Various	Face validity supports low bias; some questions	I or SA
Sense of well-being index (SWBI)	Measures subjective QOL for people with disabilities in work rehabilitation	26	Physical well-being and associated feelings about self (6); psychological well-being (7); family and social well-being (6); financial well-being (8)	4-point Likert scale Tabulate total and domain scores Higher is healthier	None reported	“Brief”	None	Altered for and evaluated in SCI population	I or SA
World Health Organization quality of life (WHOQOL-BREF)	Instrument that conceptually fits with the WHO definition of QOL	26	Physical health/capacity (7); psychological health/well-being (6); social relationships (3); environment (8); overall QOL (1); general health (1)	5-point Likert scale Domain scores calculated by multiplying mean of facet scores by four, and transformed onto a scale of 0–100 Higher is healthier	None; floor effect in one item: mobility (29.7%)	Not reported	Available in most major languages	Face validity supports low bias	SA

 

Below we discuss the most commonly used instruments in the medical literature, clustering them as global QOL and specific HRQOL for certain SCI-related sequelae tools ( Tables 3 and 4 ). Despite the numerous instruments used in this population, there are no agreed standard measures and some show deficiencies in validity and sensitivity to change in comparative studies.

Table 3

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