Psychometric evaluation of the Self-Awareness in Daily Life-3 Scale (SADL-3) for the assessment of self-awareness after acquired brain injury

ABSTRACT

Objective: The Self-Awareness in Daily Life-3 Scale (SADL-3) was designed to assess self-awareness in the chronic phase after acquired brain injury (ABI). The main objective was to evaluate its feasibility and usability for clinical practice, reliability and validity.

Methods: Participants were 89 patients with ABI. SADL-3 core distributions, floor and ceiling effects and percentage of missing items were used. Ratings made by two staff members and ratings at two time points were compared. SADL-3 ratings were compared with Awareness Questionnaire (AQ) ratings, Patient Competency Rating Scale (PCRS) ratings, and ratings made on the Clinician’s Rating Scale for evaluating Impaired Self-Awareness and Denial of Disability (CRS-ISA-DD). Staff members completed a questionnaire concerning the usability of the SADL-3.

Results: No floor or ceiling effects were present. Results show sufficient inter-rater reliability (ICC > .40), acceptable test-retest reliability (ρ_s > .75) and sufficient convergent validity (ρ_s > .30). The median administration time was 15 minutes (SD = 21.2). Most staff members rated the SADL-3 as fairly easy to very easy to complete.

Conclusions: The SADL-3 is a brief scale with sufficient psychometric properties. Teams can use it in clinical practice to identify patients’ self-awareness in the chronic phase after ABI.

KEYWORDS:

• Acquired brain injury
• self-awareness
• scale
• psychometric evaluation

Introduction

Patients with acquired brain injury (ABI) often have impaired self-awareness. They commonly experience difficulty understanding their post-injury impairments in cognition, behavior and interpersonal skills and the impact these impairments have on their daily life functioning (1,2). After stroke as well as after traumatic brain injury (TBI), impairments in the self-awareness of deficits are common. Studies on patients with stroke found lack of self-awareness in more than 70% of patients at the time the patients were admitted to stroke rehabilitation and in up to 42% of patients at the time of discharge from stroke rehabilitation (3). In patients with TBI, the prevalence rates of self-awareness deficits have been reported as ranging from 30% to 97%, depending on the severity of injury, the measurement instruments used and the time since injury (4–7).

Individuals with impaired self-awareness are impaired in learning how to cope with their deficits and may present as poorly motivated and as difficult to engage in treatments (8). This may lead to difficulty in achieving and maintaining productive and independent living (5,9–15).

Crosson et al. (16) conceptualized self-awareness by proposing a pyramid model with three different levels of awareness. The first level, intellectual awareness, involves a patient’s capacity to understand that physical and cognitive functioning is impaired and that this has implications for everyday living. The second and third levels refer to a patient’s ability to recognize one’s impairments within a task: emergent awareness refers to a patient’s ability to recognize difficulties as they are actually occurring; anticipatory awareness involves a patient’s ability to predict difficulties in future situations due to one’s impairments. Different aspects of awareness can be variously compromised. Patients may demonstrate intact intellectual awareness but impaired emergent and/or anticipatory awareness: they may know that a deficit exists but show poor appreciation of the consequences of this deficit, or they may be unable to self-monitor and identify the problem as it occurs in daily life (16).

Arno Prinsen turned Crosson’s model into a tool for use in everyday clinical practice. He implemented the model into a description of three types of patients with different levels of self-awareness. He based the patient types on types defined in Louis Cauffman’s book on problem-solving management and coaching (17). First, there is “the Passer-by” who has no awareness of his deficits. Significant others are usually the ones who experience problems and who ask for help or treatment for these individuals. Second, “the Searcher”, has some awareness of his deficits. He agrees that brain damage is part of his life but does not fully understand the consequences of the brain damage for everyday functioning and often the Searcher asks for help in a vague way. The Searcher is somewhat ambiguous about whether his problems can be solved. Last, “the Buyer” understands the fact that his brain damage affects his life, knows that he needs others to help him deal with his deficits and is willing to cooperate. His asking for help is well-defined, but he needs help in searching for useful resources. Each type of patient needs a different kind of approach.

Both Crosson’s model with different levels of awareness and Prinsen’s description of three types of patients are structured hierarchically. Crosson’s model assumes that a patient with anticipatory awareness also has emergent and intellectual awareness. In Prinsen’s description, the Buyer has more self-awareness than the Searcher, and the Searcher has more awareness than the Passer-by. When we combine both (Figure 1), the Passer-by seems to be below the level of intellectual awareness – he has very limited knowledge of his deficits – whereas the Searcher seems to be in the first stage of emergent awareness. The Buyer is in the first stage of anticipatory awareness.

Figure 1. Levels and patient types of self-awareness of deficits.

Awareness deficits may be global in nature or may vary across different areas of daily life (18,19). For instance, a patient can be a Passer-by when it comes to friends and social contacts, but a Buyer for work and daytime activities.

Since patients’ levels of awareness of deficits influence interaction with relatives and health professionals and motivation for and engagement in treatment, a short and feasible tool is needed to help professionals identify their patients’ awareness types across multiple areas of daily life. Knowledge about a patient’s level of awareness is a first necessary step for professionals in the process of identifying a clear and feasible request for help. And a clear request for help is needed in order to be able to offer individualized and tailored care and treatment.

In their systematic review of psychometric properties and the feasibility of instruments used to assess the self-awareness of deficits after ABI, Smeets and colleagues showed that no reliable and valid instrument exists with which health professionals can assess different types (or levels) of self-awareness across the various domains or areas of daily life (20). For example, the Patient Competency Rating Scale (PCRS), the Awareness Questionnaire (AQ) and the Self-Awareness of Deficits Interview (SADI) are reliable and valid awareness instruments, but assess only one aspect of awareness, namely intellectual awareness (1,20–22).

We therefore developed a new scale, the Self-Awareness in Daily Life-3 Scale (SADL-3). The SADL-3 is developed for use by the daily support staff of assisted living facilities for patients with various types of ABI. In these settings impaired self-awareness is often overlooked by staff members. The SADL-3 discerns three types of patients, based on their level of self-awareness: the Passer-by, the Searcher and the Buyer. The SADL-3 assesses patient type for seven daily life areas: family relations, friends and social contacts, intimacy and sexuality, leisure time, work and daytime activities, housing situation and living conditions, and health and appearance. The primary objective of the present study was to evaluate its feasibility and usability for clinical practice and its inter-rater and test-retest reliability and convergent validity.

Method

Patients

Participants were patients with ABI living in one of three assisted living facilities in the Netherlands for persons with ABI (Stichting Gehandicaptenzorg Limburg, Interaktcontour, Reinaerde). The patients in these facilities usually are in the chronic phase after various types of ABI. For this study we define chronicity as at least six months after injury. In general this means that most patients are no longer in rehabilitation treatment, and major improvements due to spontaneous recovery are unlikely. Participants were recruited between September 2013 and January 2015.

Inclusion criteria were: diagnosis of ABI (e.g. stroke or TBI) based on patient records; and 18 years or older at the time of inclusion. Patients were excluded from participation in this study in case of one or more of the following characteristics: degenerative or progressive disease; premorbid psychiatric disorder; premorbid substance abuse; unable to reliably complete the questionnaires (with or without the help of an independent staff member); no informed consent.

For each participant, two members of the daily support staff who knew the patient well participated in the study. The daily support staff consisted of staff members who work (almost) exclusively with patients with ABI and who support the patients with their life activities on a daily basis. Usually these staff members have obtained a secondary vocational education, level 2–4 (in the Dutch school system, secondary vocational education can be divided into four levels of training; level 1 is lowest level and level 4 is highest level).

Measures of patient characteristics

The following data were abstracted from patients’ files: gender, age, level of education, time since acquired brain injury, type of acquired brain injury (e.g. stroke, TBI). Level of education was classified as low (no education, primary education or lower vocational education), intermediate (intermediate general secondary education, intermediate vocational education or higher general secondary education), or high (higher vocational education or university).

Measures of self-awareness

The Self-Awareness in Daily Life-3 Scale (SADL-3) is a descriptive classification system which offers staff members a guideline in discerning three types of patients, based on their level of self-awareness: the Passer-by (has no awareness of his deficits, significant others are usually the ones who experience problems and who ask for help or treatment), the Searcher (agrees that brain damage is part of his life but does not fully understand the consequences of the brain damage for everyday functioning), and the Buyer (understands the fact that his brain damage affects his life, knows that he needs others to help him deal with his deficits and is willing to cooperate). The SADL-3 includes examples from daily practice which are based on clinical experience. It comes with a short manual for assessors so that less experienced staff members can also fill out the form. The manual gives a description of the three types of patients, examples of typical patient behavior and remarks corresponding to each type of patient (See Appendix A). Staff members assess this typology for seven areas of daily life: family relations, friends and social contacts, intimacy and sexuality, leisure time, work and daytime activities, housing situation and living conditions, and health and appearance. Each of these areas of daily life is scored on a scale from 1 (Passer-by) to 3 (Buyer). Staff members can also indicate when they ‘don’t know’ the awareness level for a particular daily life area, or when a daily life area is ‘not applicable’ to a patient. Scores are based on staff members’ direct judgements of the accuracy of the patient’s awareness of functioning in specific areas. The total SADL-3 score is calculated by adding up all domain scores: the total SADL-3 score can range from 7 to 21, with higher scores reflecting higher overall levels of awareness. See Appendix B.

To evaluate convergent validity of the SADL-3, three additional measures of self-awareness were used in this study. In their systematic review of psychometric properties of instruments used to assess the self-awareness of deficits after ABI, Smeets and colleagues (20) showed that the Patient Competency Rating Scale (PCRS), and the Awareness Questionnaire (AQ) are two of three existing instruments that stand out in terms of reliability and validity. Because both assess only one aspect of awareness, namely intellectual awareness, we decided to add another instrument from this review (the Clinician’s Rating Scale for evaluating Impaired Self-Awareness and Denial of Disability (CRS-ISA-DD)) that covers more than just intellectual awareness and is used in more than one previous study, has sufficient inter-rater reliability, convergent validity and responsiveness (20,23).

The Awareness Questionnaire (AQ) rates patients’ current performance relative to their performance before brain injury on a variety of everyday activities. There are forms for patient self-ratings as well as family/significant other and clinician ratings. In the present study, the forms for patient self-ratings and clinician ratings were used. In both forms, 17 items are rated on a 5-point Likert scale ranging from 1 (much worse) to 5 (much better). Scores can range from 17 to 85. The degree of impaired self-awareness is inferred from a discrepancy score that is calculated by subtracting the clinician ratings from the patient self-ratings. The total AQ discrepancy scores can range from −68 to 68. Higher discrepancy scores are thought to reflect greater degrees of impaired self-awareness. The AQ has sound reliability and validity (22,24).

The Patient Competency Rating Scale (PCRS) evaluates performance in activities of daily living, cognitive functioning, interpersonal functioning and emotional regulation. The self-ratings of patients are compared with the ratings of their relatives or professionals. In the present study, the forms for patient self-ratings and clinician ratings were used. In both forms, 30 items are rated on a 5-point Likert scale from 1 (cannot do) to 5 (can do with ease). Scores can range from 30 to 150. A discrepancy score is calculated between the patient’s self-ratings and the professional’s ratings. The total PCRS discrepancy scores can range from

-120 to 120. Higher discrepancy scores are thought to reflect greater degrees of impaired self-awareness. The PCRS has sound reliability and validity (21).

The Clinician’s Rating Scale for evaluating Impaired Self-Awareness and Denial of Disability (CRS-ISA-DD) (23) is designed to distinguish between Impaired Self-Awareness (ISA), i.e. awareness deficits predominantly accounted for by neurocognitive factors or a neurologically-based deficiency, and Denial of Disability (DD), i.e. awareness deficits mainly influenced by psychological factors. The CRS-ISA-DD consists of two subscales, each enlisting ten behaviors indicative of either ISA or DD. The assessor rates the presence and severity of the behavior based on contact with the patient and a relative. Spontaneous comments (intellectual awareness), a patient’s responses to feedback on performance on tasks or tests (emergent awareness) and behavior in everyday life (emergent and/or anticipatory awareness) are all taken into account by the assessor. For the present study only the subscale CRS-ISA was used, and only the ‘presence’ score was used. If a characteristic is not present, the score is 0; if a characteristic is present, the score is 1. The total score of the CRS-ISA subscale ranges from 0 to 10, with higher scores reflecting greater degrees of impaired self-awareness. An initial study on the psychometric properties of the CRS-ISA-DD showed sufficient inter-rater reliability and convergent validity (23).

Usability for clinical practice

All staff members who participated in the study individually filled out a semi-structured usability questionnaire at least once for every patient that they assessed with the SADL-3. Staff members were asked to rate its assessment time (in minutes). They also rated the ease with which they could fill out the SADL-3 on a Likert scale. Possible scores were: 1- very easy to use; 2- easy to use; 3- fairly easy to use; 4- moderate; and 5- hard to use. In addition, there were open questions asking about the additional value of the SADL-3 for everyday clinical practice, weaknesses of the SADL-3 and suggestions for improvement, whether using the SADL-3 helped staff members make decisions about approaches to deal or interact with patients, and whether using the SADL-3 improved communication between staff members. See Appendix C.

Procedure

All participating assisted living facilities organized a single thirty-minute team meeting in which the first author explained the rationale behind the SADL-3 and the instructions for assessors and the score form. All participating staff members received a printed manual for assessors (See Appendix A).

For all patients, a staff member confirmed eligibility criteria at the start of the study. Eligible patients received oral and written information and were given the opportunity to ask questions about the study. After patients provided written informed consent, a staff member obtained demographic information (gender, age, level of education, time since acquired brain injury, type of acquired brain injury) from the patient records.

Staff members who knew the patients well and the patients themselves completed the SADL-3, AQ, PCRS and CRS-ISA-DD at T0 (baseline) and at T1 (test-retest reliability). At T0, a second staff member who also knew the patients well completed the SADL-3 as second rater (inter-rater reliability). All staff members filled out the usability questionnaire at least once (at T0 or at T1, or on both occasions) for every patient that they assessed with the SADL-3 (usability).

The Medical Ethics Committee of Maastricht University Medical Centre formally approved the study protocol. All patients gave informed consent.

Statistical analyses

Patient characteristics

Descriptive statistics were used to describe the demographic and injury-related parameters.

Feasibility

To evaluate feasibility, we used descriptive statistics to indicate core distributions (mean, median, standard deviation, range, floor and ceiling effects and percentage of missing items) on the SADL-3, AQ, PCRS and CRS-ISA-DD (ISA subscale) at T0. Floor and ceiling effects were considered present if more than 15% of the patients had the highest or the lowest possible score (25). Data were discarded if more than 25% of the items were missing. If the number of missing items for any scale was within the allowed range, the total score was imputed by extrapolating the total score of the items available ((total score/#completed items)*total#items on scale).

Inter-rater reliability

To investigate the inter-rater reliability of the SADL-3, the ratings of two staff members at T0 were compared: the intra-class correlation coefficients (ICC) for the SADL-3 total score and for every area of daily life were calculated (one-way random model, single measure) (26). An ICC >.74 was considered excellent inter-rater reliability, between .74 and .60 was considered good, between .59 and .40 fair, and below .40 was considered poor (27). Data were discarded when the time between the ratings of the two staff members was longer than 14 days.

Test -retest reliability

To investigate the test-retest reliability of the SADL-3, the ratings of staff members at T0 and T1 were compared: simple correlation coefficients (Spearman) were calculated for the SADL-3 total score and for every area of daily life. Correlations higher than .80 were considered as showing sufficient test-retest reliability, correlations between .70 and .80 as acceptable and correlations below .70 as questionable (28). Data were discarded when the time between T0 and T1 was longer than 14 days.

Convergent validity

To investigate convergent validity, SADL-3 ratings were compared with AQ ratings, PCRS ratings and CRS-ISA-DD ratings (T0). Simple correlation coefficients (Spearman) were calculated between SADL-3 total scores and total AQ discrepancy scores, between SADL-3 total scores and total PCRS discrepancy scores, and between SADL-3 total scores and total CRS-ISA subscale scores. Correlations higher than .60 were considered as showing good convergent validity, correlations between .30 and .60 were considered moderate and correlations below .30 as poor (28).

Since the AQ and PCRS assess only intellectual awareness, whereas the SADL-3 was designed to assess patients’ self-awareness across multiple levels (or patient types), we expected that the correlations between the SADL-3 and AQ and PCRS would be significant but low (close to .30). For the CRS-ISA subscale it is likely that clinicians base their scores not only on the patient’s intellectual awareness, but also take into account a patient’s emergent awareness and anticipatory awareness (e.g. the patient’s reaction to feedback or errors). Therefore we expected the correlation between the CRS-ISA-subscale and the SADL-3 to be significant and moderate to good (significantly higher than .30).

Usability for clinical practice

To evaluate the usability of the SADL-3 for clinical practice, descriptive statistics were used to present usability scores and the median assessment time. Qualitative data, resulting from the open-ended questions, were clustered based on the contents of the answers.

Results were considered significant if p < .05. All statistical analyses were conducted using SPSS 24.0 for Windows.

Results

Patient characteristics

Eighty-nine patients participated in this study. Characteristics of the study sample are presented in Table 1.

Table 1. Patient characteristics (n = 89).

Gender, n male	65
Mean age in years (SD; range)	53 (23–74)
Education level*, n
Low	32
Intermediate	31
High	13
Missing	12
Setting, n
Interaktcontour	54
Stichting Gehandicaptenzorg Limburg	19
Reinaerde	16
Mean time since acquired brain injury in years (SD; range)	16 (0–52)
Type of acquired brain injury, n
Traumatic	35
Cerebrovascular	36
Hypoxia	1
Encephalopathy	2
Tumor	6
Mixed**	5
Missing	4

*Low = no education, primary education or lower vocational education; intermediate = intermediate general secondary education, intermediate vocational education or higher general secondary education; high = higher vocational education or university.

**n = 1 cerebrovascular and encephalopathy; n = 1 traumatic, cerebrovascular and tumor; n = 1 hypoxia and encephalopathy; n = 2 traumatic and cerebrovascular.

Feasibility

Table 2 presents score distributions (mean, median, standard deviation, range of the total scores of the SADL-3, AQ, PCRS and the scores of the CRS-ISA subscale. No floor and ceiling effects were found on any questionnaire; only maximally 9 participants scored the lowest or highest possible score (<15%). With respect to the missing values, data from the SADL-3 were discarded for 13 of the 89 patients (15%), data from the AQ were discarded for 6 patients (7%), data from the PCRS were discarded for 5 patients (6%), and data from the CRS-ISA subscale were discarded for 22 patients (25%).

Table 2. Score distributions of SADL-3, AQ, PCRS and CRS-ISA at T0.

	SADL-3 (n = 76)	AQ (n = 83)	PCRS (n = 84)	CRS-ISA (n = 67)
Statistic
Items, n	7	17	30	10
Scale range	7.00 to 21.00	−68.00 to 68.00	−120.00 to 120.00	0.00 to 10.00
Mean (SD)	13.68 (4.22)	8.96 (11.33)	14.07 (20.20)	5.38 (2.81)
Median	13.50	8.00	15.00	6.00
Score range	7.00 to 21.00	−20.00 to 35.00	−62.00 to 57.07	0.00 to 10.00
% with lowest score	7.9 (n = 6)	1.2 (n = 1)	1.2 (n = 1)	1.2 (n = 1)
% with highest score	11.8 (n = 9)	1.2 (n = 1)	1.2 (n = 1)	6.2 (n = 5)
% more than 25% missing items	17.1 (n = 13)	Patient form: 0 (n = 0) Clinician form: 7.2 (n = 6)	Patient form: 1.2 (n = 1) Clinician form: 4.8 (n = 4)	27.16 (n = 22)

SADL-3 = Self-Awareness in Daily Life-3; AQ = Awareness Questionnaire; PCRS = Patient Competency Rating Scale; CRS-ISA = Clinician’s Rating Scale for evaluating Impaired Self-Awareness and Denial of Disability-ISA subscale.

Inter-rater reliability

Inter-rater reliability was good for the SADL-3 total score (ICC = .64, p = .00; n = 56), fair to good for five of the seven areas of daily life (ICC = between .42 and .60) and insufficient for the daily life areas of family relations (ICC = .37) and friendship and social contacts (ICC = .38). See Table 3.

Table 3. Inter-rater reliability: Intra class correlations for SADL-3.

SADL-3	n	ICC
Total score	56	.64**
Family relations	67	.37**
Friends and social contacts	63	.38**
Intimacy and sexuality	34	.46**
Leisure time	63	.42**
Work and daytime activities	64	.43**
Housing situation and living conditions	65	.42**
Health and appearance	66	.60**

ICC = Intra Class Correlation coefficient

SADL-3 = Self-Awareness in Daily Life-3

** = p < .01

Test-retest reliability

Test-retest reliability was acceptable to sufficient: sufficient associations were found between the SADL-3 total scores at T0 and T1 (ρ_s = .93, p = .00, n = 40); acceptable to sufficient associations were found for the seven areas of daily life (ρ_s = between .78 and .91). See Table 4.

Table 4. Test-retest reliability: associations between SADL-3 scores at T0 and T1.

SADL-3	n	ρs
Total score	40	.93**
Family relations	50	.82**
Friends and social contacts	48	.78**
Intimacy and sexuality	35	.87**
Leisure time	44	.87**
Work and daytime activities	47	.81**
Housing situation and living conditions	49	.87**
Health and appearance	47	.91**

ρ_s = Spearman correlation coefficient

SADL-3 = Self-Awareness in Daily Life-3

T0 = baseline; T1 = 2 weeks after T0

** = p < .01

Convergent validity

The SADL-3 scores showed significant moderate correlations with scores on the PCRS (ρ_s = −.34, p = .00, n = 75) and the CRS-ISA subscale (ρ_s = −.59, p = .00, n = 67). No significant associations were found between the SADL-3 total scores and scores on the AQ (ρ_s = −.11, p = .34, n = 74).

Usability for clinical practice

Staff members filled out the usability questionnaire at least once for every patient that they assessed with the SADL-3. In total the usability questionnaire was filled out 130 times.

The mean usability score of the SADL-3 was 2.9 (SD = .78). For 81.5% of the time the SADL-3 was rated as ‘fairly easy’ to ‘very easy’ to complete. 18.5% of the time the SADL-3 was rated as ‘moderate’ to ‘hard’ to complete.

The median administration time of the SADL-3 was 15.0 minutes (SD = 21.2). For 63.3% of the time, staff members needed 20 minutes or less to complete the SADL-3.

Open-ended questions (see Table 5) first concerned staff members’ reflection upon the additional value of the SADL-3 for everyday clinical practice. In 63% of the completed questionnaires, staff members confirmed the additional value of the SADL-3 for everyday clinical practice. Staff members felt that using the SADL-3 helped them obtain a detailed and more accurate impression of the patients’ awareness of functioning across different areas of life. In 28% of the completed questionnaires, staff members indicated that the SADL-3 had no additional value for everyday clinical practice. One reason put forth was that staff members felt that using the SADL-3 did not lead to new knowledge when they had known the patient for a long time; however, using the SADL-3 with new patients could lead to new insights. In 9% of the questionnaires, staff members did not answer the question on the additional value of the SADL-3.

Table 5. Usability of the SADL-3: responses to open-ended questions.

Questions	Responses
Do you think using the SADL-3 can be of additional value for everyday clinical practice?	Yes (63%) No (28%) Not answered (9%)
What do you consider weaknesses of the SADL-3 and suggestions for improvement?	– Not every area of daily life is relevant for every patient – Staff members do not always have knowledge about a patient’s functioningin all life areas – Life areas are broad; for some life areas patients can be twodifferent types of patients
Does using the SADL-3 help you make decisions about ways to deal or interact with patients?	Yes (46%) No (32%) Not answered (22%)
Does using the SADL-3 improve communication between staff members?	Yes (41%) No (37%) Not answered (22%)

Second, staff members were asked about possible weaknesses of the SADL-3 and suggestions for improvement. Two often reported weaknesses were that not every area of daily life delineated in the SADL-3 was relevant for every participating patient, and that staff members did not always have knowledge about a patient’s functioning in a particular life area (e.g. for the life area of intimacy and sexuality). Another reported weakness was that life areas are broad, so that for some life areas patients can be two types of patients (e.g. for the life area housing situation and living conditions, a patient can be a Searcher when it comes to cleaning the house, and a Passer-by when it comes to dividing their money over the month).

Last, staff members were asked whether they thought that using the SADL-3 helped them make decisions about approaches to deal or interact with patients, and whether they thought that using the SADL-3 improved communication between staff members.

46% of the time, staff members thought that using the SADL-3 helped them have better understanding of patients’ behavior and make decisions about ways to interact with patients.

32% of the time, staff members did not feel that the SADL-3 helped in making such decisions. 22% of the time, staff members did not answer this question.

41% of the time, staff members confirmed that using the SADL-3 improved communication between staff members. Within staff teams, using the SADL-3 may help team members speak the same language when it comes to talking about awareness of deficits or functioning, discussing differences in the way staff members interpret their patients’ behaviors, and in tuning ways of approaching patients. 37% of the time, staff members felt that using the SADL-3 did not improve communication between team members (since in daily practice staff members had little time to discuss findings on the SADL-3). 22% of the time, staff members did not answer this question.

Discussion

The primary aim of the present study was to assess the psychometric properties of the SADL-3 in a group of patients in the chronic phase after ABI. The feasibility and usability, inter-rater reliability, test-retest reliability and convergent validity were investigated.

Results concerning feasibility showed no floor and ceiling effects and scores were spread sufficiently across all awareness levels or patient types and across the various areas of daily life. In our patient sample all levels described in Crosson’s model (16) and all three types of patients described by Prinsen were represented. This means that these levels/types are recognized in and useful for daily practice. Usability for clinical practice seems acceptable: the median administration time was fifteen minutes and most staff members of the participating assisted living facilities rated the SADL-3 as fairly easy to very easy to complete.

Overall, results demonstrated good psychometric properties of the SADL-3.

Inter-rater reliability was good for the total score of the SADL-3 and fair to good for five of the seven areas of daily life. Inter-rater reliability was insufficient for the daily life areas family relations and friendship and social contacts. Staff members indicate that for some patients little is known about family, friends and social contacts. Although on the score form staff members can indicate when they don’t know a patient’s awareness level for a particular daily life area, staff members may have given inaccurate awareness ratings for these areas. In the manual we have now clarified that staff members should not rate an area of daily life when they have no information on the patient’s awareness level for this particular area.

Test-retest reliability was acceptable to sufficient for SADL-3 total scores as well as for the seven daily life areas.

As expected, convergent validity was sufficient and highest when SADL-3 was compared with the CRS-ISA subscale. Convergent validity also was sufficient when compared with PCRS, but lower than expected when we compared SADL-3 with AQ. One explanation may be that on the AQ, clinicians are asked to compare the patient’s level of present functioning to his pre-injury level. This may have been difficult to judge for the staff members, since the ‘mean time since acquired brain injury’ was16 years.

To our knowledge this is the first instrument that has good psychometric properties and that can assess different types (or levels) of self-awareness across various areas of daily life. Existing instruments such as the AQ, PCRS and SADI are reliable and valid awareness instruments, but assess only one aspect of awareness, namely intellectual awareness (20).

Results on the open-ended usability questions showed that SADL-3 life areas are broad, so that for some areas of life, patients can be two types of patients (e.g. for the life area housing situation and living conditions, a patient can be a Searcher when it comes to cleaning the house, and a Passer-by when it comes to dividing their money over the month). When developing the SADL-3, we deliberately chose to limit the number of life areas so that staff members can quickly fill out the SADL-3, instead of having to rate many very specific and detailed life areas. Filling out the SADL-3 helps staff members to get a first idea of a patient’s awareness of functioning in daily life; next, staff members should start a dialog with the patient (and relatives) to find out what the specific life areas mean for this particular patient. On the SADL-3 score form there is room for exemplifying variation in awareness within life areas.

Results further showed that staff members’ opinions on the value of SADL-3 for making decisions about approaches to deal or interact with patients, were mixed. A possible reason may be that at the moment, staff members lack tools to take a next step, i.e. use the knowledge on patients’ levels of awareness for starting a dialog with patients (and relatives) and for adjusting approaches to the patients’ needs and capabilities. SADL-3 was designed to help staff members identify patients’ levels of self-awareness across seven areas of daily life. This is just a first – but necessary – step for staff members in the process of tailoring care to patients’ needs. The next steps can be for staff members to use the knowledge on a patient’s awareness level to 1) work towards identifying a clear and feasible request for help and 2) offer individualized and tailored care. Future research is needed to develop tools for improving dialog with patients, for adjusting approaches to the patients’ needs and capabilities, and to evaluate the actual benefits of such tools for improving dialogs between patients and staff members and for improving patient outcomes.

This study has some limitations. First, for test-retest and inter-rater reliability, some data were excluded from the analyses. An interval period of maximally two weeks was chosen to limit the possibility of interference of improved self-awareness of deficits due to spontaneous recovery. For some patients, assessment occasions were more than two weeks apart; in these cases, data were excluded from the analyses. Second, staff members anonymously filled out the usability questionnaires. We did not collect data on, for example, the number of years of working experience and education level. Therefore it is not possible to check for the influencing role of these factors on answers given by staff members on questions about the ease of administration of the SADL-3 or the additional value of the SADL-3 for daily practice. Finally, some staff members filled out the SADL-3 and the usability questionnaire only once during the study. Others assessed multiple patients on one or more occasions. This may have influenced results. Since staff members filled out the questionnaires anonymously it is not possible to control for multiple assessments by the same person.

In conclusion, the SADL-3 is a valid and reliable scale for assessing patients’ levels of self-awareness across seven areas of daily life. Filling out the SADL-3 may help staff members to come to valid conclusions regarding their patients’ level of self-awareness of in the chronic phase after various types of ABI. Future research is needed to develop tools to use the knowledge about patients’ levels of awareness for improving communication within the team and with patents and relatives, and for adjusting approaches to the patients’ needs and capabilities.

Disclosure of interest

The authors report no conflict of interest.

Data availability statement

The data that support the findings of this study are available from the corresponding author, [IW], upon reasonable request.

Acknowledgments

We thank all patients and staff members of Interaktcontour, Stichting Gehandicaptenzorg Limburg and Reinaerde for their participation in this study.

We thank Kelly Bax (Interaktcontour) and Jan Kampen (Reinaerde) for their active participation in the development of the SADL-3, in the inclusion of patients and for data collection.

We thank the team of Marie-Paul Max of the Association nationale des Victimes de la Route Luxembourg and Wouter Lambrecht and Camille de Schaepmeester of the Centrum voor Neuropsychologie Gent Belgium and the Hersenletselpraktijk Gent Belgium for their help in translating the SADL-3 into French.

Appendices

Appendix A.

SADL-3 manual

Self-Awareness in Daily Life-3 Scale (SADL-3):

A scale for the assessment of three levels of self-awareness after acquired brain

injury

Authors

Arno Prinsen (Dendriet)

Rudolf Ponds, Sanne Smeets and Ieke Winkens (Maastricht University)

Annemieke Meijerink (InteraktContour)

Version

May 2018

[English, Dutch or French copies of the SADL-3 can be requested via Arno Prinsen: [email protected]. Use of the SADL-3 is free of charge; the authors would appreciate being informed if professionals use the scale in clinical practice or for research]

Instructions

Some patients with acquired brain injury fully understand what is going on and find their way to help and treatment. Others do not understand why their relatives would like them to seek professional help. One patient may be highly motivated, while another one interacts reluctantly with professionals.

Patients who are not aware of their deficits experience delay in learning to cope with their deficits. Sometimes they fail to adjust to their deficits.

This scale¹ helps daily support staff to differentiate three types of patients, based on the patients’ levels of awareness of their deficits. Knowledge of patients’ levels of self-awareness helps support staff to interact with their patients in an appropriate way.

¹Based on the book “Heb ik een probleem dan? [Do I have a problem]” written by Arno Prinsen

The three levels of self-awareness are:

Table

Passer-by	Searcher	Buyer
Has no awareness of his deficits. Significant others are usually the ones who experience problems and ask for help or treatment (the way the passer-by experiences the world differs from the way significant others experience the world)	Agrees that brain damage is part of his life but does not fully understand the consequences of the brain damage for everyday functioning His requests are vague, and/or Has no overview of his problems, and/or Has little confidence that his problems will be solved Often cancels his own requests (both the searcher and significant others experience the same problems; they differ in the way they want to deal with the problems)	Understands the fact that his brain damage affects his life Knows that he needs others to help him deal with his deficits Is willing to cooperate in search for solutions (both the buyer and significant others experience the same problems and agree on solving the problems)

Self-awareness may vary throughout different daily life areas. For instance, a patient can be a Passer-by for his memory problems but a Buyer for his physical needs. This instrument helps you to determine your patient’s level of self-awareness in different areas of daily life.

Below we have clustered patients’ statements in various areas of daily life areas. These and other statements can help you to fill out the score form.

Table

Daily life area	Passerby	Searcher	Buyer
Family relations
Examples of abilities or tasks that fit in this area of daily life: make appointments about housekeeping, making up after a quarrel, tell the other one that you need time on your own, divide your time between family and other important issues, show interest in your family	My relationship with my partner and children has not changed (in reality both the partner and children experience many changes in behaviour). The only thing that has changed is the fact that my wife thinks that I have changed (in reality both partner and children experience the patient as a completely different person).	I want to improve my relationship with my kids; unfortunately you (=professional) can’t help me with that. Something has changed in my relationship with my spouse, I don’t know what exactly. In early days I could get along well with my kids, nowadays it’s harsh.	I quarrel a lot with my spouse and I would like your (=professional) help to discuss what I can do about it. Since I moved to a group home, my relationship with my wife has become better.
Friends and social contacts
Get in touch with friends on a regular basis, tell someone that he is crossing a line, be interested in someone else’s emotional life, know the difference between friends and acquaintances, expressing to one another what you want	My old buddies visit me often (in reality old friends don’t visit on a regular basis). I do have many friends (in reality the patient says hello to other people and he only has superficial acquaintances).	My friends don’t come over to my place anymore. I don’t know why. Things have changed in my relationship with my friends, but I can’t help it.	Would you (=professional) help me to get in touch with my neighbours? I don’t see my best friend very often; would you help me to restore contact?
Intimacy and sexuality
Knowing the difference between what you like and what you don’t like, get in touch with someone you like, knowing how to get pregnant or not, understand that someone might not like something you want, knowing what your spouse likes	It’s not my fault that my partner and I are not intimate anymore (in reality the patient doesn’t take the wishes of his spouse into account).	My wife and I are not intimate anymore. I don’t know why that is I would like to have a relationship. How do you get one?	I would like to have a relationship, would you help me with that? For example in making an online profile? Recently there has been little intimacy in my relationship. Could you help me to discuss this with my spouse?
Leisure time
Finding a balance between stressful activities and relaxing activities, being aware of time, thinking of something to do when you are bored, knowing what your limitations are, knowing how long an activity will take	I still have the same hobbies (in reality the patient doesn’t pick up his former hobbies). I know how to fill in my days (in reality the patient is often bored and goes to bed early).	I cannot practise my former hobby anymore. It doesn’t matter, I don’t like it anymore. I would like to relax more often, I don’t know how. I’ve got fewer hobbies than I used to have. But that’s the way it is. You (=professional) cannot help me with that.	I would like to practise my old hobbies again. Will you help me with that? I would like to relax more often, could you help me with that? Housekeeping costs me so much time, I don’t have time to relax. Could you help me with that?
Work and daytime activities
Asking for advice when you don’t understand something, accept that something is not possible, being proud of your work and showing it, orienting in a room, finish what you started	Soon I will get back to work (in reality significant others think that going back to work is unrealistic). I ‘m going to a day activity centre because my wife wants me to. I’d rather stay home. I don’t belong here (=day activity centre).	My boss says I don’t have to come back to work anymore. I don’t get it. I really would like to work again, but in fact I’ve got brain damage, so that is impossible.	I’m not able to pick up my former work, so I really would like to go to a day activity centre. Could you help me with that? I have adjusted my work to my disabilities. Is it possible to adjust my work in an even better way?
Housing situation and living conditions
To set up a home in a pleasant way, clean your house, knowing where grocery shopping is cheap, to keep up maintenance, divide your money over the month	Cleaning my apartment is easy to do (in reality the apartment is disorderly and dirty. I see a lot of pressure for payments. It’s a mistake, I don’t have debts (in reality the debts are for real).	What should I do with this? (the patient opens a drawer which contains all the letters he received in the last 1.5 years) I really would like to organize my housekeeping in a different way. However, I don’t know where to start.	Can you help me to organise my administration? I cannot do it by myself. I would like to prepare easy meals. Can you help me with that?
Health and appearance
Use medication according to prescription, develop your own style of clothing, eat regularly and healthily, knowing what your physical disabilities are, to have physical fitness.	I don’t reek (in reality the patient smells bad). I can manage my own medication (in reality the patient doesn’t know which pill to take at what time).	I have so many pills, I don’t understand why I’m taking them. Laundry keeps on building up. I don’t know how to manage that.	I’ve got so many pills; when do I have to take this yellow one? Could you help me to make a laundry schedule?

Appendix B.

SADL-3 score form

Use information from both the patient and significant others to fill out this form .

For every daily life area, mark with a cross whether you think the patient is a Passer-by, Searcher or Buyer.

Should you hesitate between ‘Passer-by’ or ‘Searcher’, choose ‘Passer-by’. Should you hesitate between ‘Searcher’ or ‘Buyer’, choose ‘Searcher’. When you lack information on a patient’s awareness level for a particular daily life area, choose ‘Don’t know’. When a life area is not relevant for a patient (e.g. the patient does not engage in any activities within this area), choose ‘Not applicable’.

Table

Daily life area	Passer-by (experiences no problems; significant others do) (score = 1)	Searcher (requests are vague, no overview of his problems, little trust his problems will be solved, cancels his requests) (score = 2)	Buyer (experiences problems, requests are clear, willing to cooperate, view of life matches the view of life of significant others) (score = 3)	Don’t know	Not applicable
Family relations (making up after a quarrel, showing interest in your family)
Friends and social relations (get in touch with friends on a regular basis, be interested in someone else’s emotional life)
Intimacy and sexuality (understand that someone might not like something you want, knowing what your spouse likes, Getting in touch with someone you like)
Leisure time. (thinking of something to do when you are bored)
Work and daytime activities (asking for advice when you don’t understand something; finishing what you started)
Housing situation and living conditions (cleaning your house, dividing your money over the month)
Health and appearance (using medication according to prescription, eating regularly and healthily, being physically fit)

Appendix C.

Usability questionnaire

• 1. How easy or how hard was it for you to fill out the SADL-3?

∘ Very easy

∘ Easy

∘ Fairly easy

∘ Moderate

∘ Hard

• 2. How long did it take you to fill out the SADL-3?

___________ minutes

• 3. What do you consider weaknesses of the SADL-3 and suggestions for improvement?

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• 4. Do you think using the SADL-3 can be of additional value for everyday clinical practice? Why/why not?

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• 5. Does using the SADL-3 improve communication between staff members? If yes, how?

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• 6. Does using the SADL-3 help you make decisions about ways to deal or interact with patients? If yes, how?

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