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Assessing the impact on caregivers of patients with schizophrenia: psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ).

ABSTRACT: The Schizophrenia Caregiver Questionnaire (SCQ) was developed to assess the impact on caregivers of caring for patients with schizophrenia. The objective of this study was to develop a scoring algorithm for the SCQ, and evaluate its measurement properties.The SCQ was administered to 358 caregivers of patients with schizophrenia included in the observational PATTERN study of stabilized patients with persistent symptoms of schizophrenia receiving outpatient care. SCQ item selection and creation of scores were based on exploration of item response distribution, factor analyses, and Rasch model. Construct validity, reliability, and ability to detect change of the SCQ scores were investigated.The final questionnaire comprised a 'Humanistic impact' supra-domain composed of a global score and four subdomain scores ('Physical'; 'Emotional'; 'Social'; 'Daily life'), and eight other domain scores related to the caregiving role ('Exhaustion with caregiving'; 'Feeling alone'; 'Patient Dependence'; 'Worries for the patient'; 'Perception of caregiving'; 'Financial dependence of the patient'; 'Financial impact of caregiving'; 'Overall difficulty of caregiving'). Two items from the SCQ were deleted. SCQ scores showed very good construct validity: Item convergent/discriminant validity were satisfactory; SCQ scores of caregivers of patients with more severe symptoms were higher indicating more impact (p?

SUBMITTER: Rofail D

PROVIDER: S-EPMC4950699 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Assessing the impact on caregivers of patients with schizophrenia: psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ).

Rofail Diana D Regnault Antoine A le Scouiller Stéphanie S Lambert Jérémy J Zarit Steven H SH

BMC psychiatry 20160718

<h4>Background</h4>The Schizophrenia Caregiver Questionnaire (SCQ) was developed to assess the impact on caregivers of caring for patients with schizophrenia. The objective of this study was to develop a scoring algorithm for the SCQ, and evaluate its measurement properties.<h4>Methods</h4>The SCQ was administered to 358 caregivers of patients with schizophrenia included in the observational PATTERN study of stabilized patients with persistent symptoms of schizophrenia receiving outpatient care. ...[more]

PMID: 27431493

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Project description:BACKGROUND:The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. METHODOLOGY:This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a cross-sectional study (questionnaire validation) to complete validation and estimate Cronbach's alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen's kappa coefficient test. RESULTS:There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45?years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37?years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the "Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire" (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. CONCLUSIONS:The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.

Project description:INTRODUCTION: The Fibromyalgia Impact Questionnaire (FIQ) is a commonly used instrument in the evaluation of fibromyalgia (FM) patients. Over the last 18 years, since the publication of the original FIQ, several deficiencies have become apparent and the cumbersome scoring algorithm has been a barrier to widespread clinical use. The aim of this paper is to describe and validate a revised version of the FIQ: the FIQR. METHODS: The FIQR was developed in response to known deficiencies of the FIQ with the help of a patient focus group. The FIQR has the same 3 domains as the FIQ (that is, function, overall impact and symptoms). It differs from the FIQ in having modified function questions and the inclusion of questions on memory, tenderness, balance and environmental sensitivity. All questions are graded on a 0-10 numeric scale. The FIQR was administered online and the results were compared to the same patient's online responses to the 36-Item Short Form Health Survey (SF-36) and the original FIQ. RESULTS: The FIQR was completed online by 202 FM patients, 51 rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) patients (31 RA and 20 SLE), 11 patients with major depressive disorder (MDD) and 213 healthy controls (HC). The mean total FIQR score was 56.6 +/- 19.9 compared to a total FIQ score of 60.6 +/- 17.8 (P < 0.03). The total scores of the FIQR and FIQ were closely correlated (r = 0.88, P < 0.001). Each of the 3 domains of the FIQR correlated well with the 3 related FIQ domains (r = 0.69 to 0.88, P < 0.01). The FIQR showed good correlation with comparable domains in the SF-36, with a multiple regression analysis showing that the three FIQR domain scores predicted the 8 SF-36 subscale scores. The FIQR had good discriminant ability between FM and the 3 other groups; total FIQR scores were HC (12.1 +/- 11.6), RA/SLE (28.6 +/- 21.2) and MDD (17.3 +/- 11.8). The patient completion time was 1.3 minutes; scoring took about 1 minute. CONCLUSIONS: The FIQR is an updated version of the FIQ that has good psychometric properties, can be completed in less than 2 minutes and is easy to score. It has scoring characteristics comparable to the original FIQ, making it possible to compare past FIQ results with future FIQR results.

Project description:Abstract Background We have previously described the development and content validity of a new patient-reported outcome measure (PRO) to assess patients’ subjective experience of cognitive impairment in schizophrenia: The Patient-Reported Experience of Cognitive Impairment in Schizophrenia (PRECIS). Here we assess the psychometric properties of the PRECIS PRO in patients with schizophrenia and healthy age-matched controls with the aim of developing a revised version for use in clinical studies. Methods The PRECIS PRO is a 35-item scale comprising eight concept domains (memory, communication, control, planning, handling problems, attention, sharp thinking and overall experience), each with multiple individual items. PRECIS was administered to psychiatrically-healthy controls (single visit), and a subset of patients in a large, clinical trial assessing patients with schizophrenia on stable antipsychotic treatment (NCT02281773) at baseline and Weeks 6, 9 and 12. Analysis of the original 35-item PRECIS PRO included factor structure, factor analysis (FA), internal consistency, test-retest reliability and discriminant (known groups) validity testing. FA was performed on all pre-treatment scores in the patient group (n=410) and patients and controls combined (n=498). Individual items with less than adequate reliability or validity were then identified and eliminated or modified. Results Questionnaire responses were collected from 410 patients with schizophrenia and 88 healthy controls. The mean (standard deviation [SD]) total PRECIS score was significantly lower for healthy controls (1.39 [0.7]) compared with patients (2.06 [1.2]; p<0.0001), as was overall experience domain score (1.41 [0.7] vs 2.35 [1.3]; p<0.0001). For each domain of patient experience, PRECIS mean scores were also significantly lower for healthy controls compared to patients with schizophrenia. The mean differences between groups ranged from -0.94 (overall experience domain) to -0.52 (control domain; p<0.0001, all domains). Patients with schizophrenia had wider response distributions compared with controls, while the control group had marked “floor effects” across most items. Initial exploratory FA of the 35-item PRECIS PRO identified a 6-domain solution that accounted for 62% of total item variance, and Cronbach’s alpha (0.959) indicated an extremely high level of internal consistency. Following analyses of the 35-item PRECIS PRO, a total of 11 items were eliminated based on pre-specified criteria (poor loading onto identified factors, marked floor effects in patient groups or <50% test-retest reliability). Confirmatory FA of the revised 24-item PRECIS PRO identified 1 primary domain (attention) and 3 secondary additional domains (memory, executive function, communication). An additional domain included items related to patient distress or bother related to cognitive impairment. There was a high level of internal consistency both for the overall 24-item PRECIS PRO (Cronbach’s alpha= 0.942) and individual domains (Cronbach’s alphas: 0.743–0.873). Intraclass correlation coefficients were 0.78 for the overall 24-item PRECIS PRO and ranged from 0.49–0.74 for individual domains. Finally, discriminant validity testing confirmed there were significant differences between the patient group and the control group in each of the 5 domains of the revised 24-item PRECIS PRO (p<0.0001). Discussion This large validation study demonstrated that the revised 24-item PRECIS PRO is a valid and reliable PRO measure with good internal consistency, adequate test-retest reliability and strong discriminant validity. PRECIS may therefore serve to define key patient-based endpoints for use in future clinical studies. Funding Boehringer Ingelheim (1289.20)

Project description:In recent years, increased attention has been paid to the benefit finding of family caregivers due to the important role they play. Although some instruments measure benefit finding of caregivers, they do not comprehensively address it in terms specific to the family caregivers of stroke survivors, who require long-term, consistent care. This study is the first effort to develop a comprehensive Caregiver Benefit Finding Scale for the family caregivers of stroke survivors in a Chinese cultural setting. First, 50 items were extracted from a systematic literature review, and a semi-structured interview was conducted with 20 stroke family caregivers to develop the preliminary version of the scale (Version 1). Second, Delphi procedures with 20 experts were used to revise the first version and create Version 2 (37 items). Another six experts were recruited for content validation. Item content validity index (I-CVI) values ranged from 0.83 to 1.00, and the value of the scale CVI was 0.97. Third, 309 family caregivers completed the Version 2 questionnaire and the Chinese version of the Positive Aspects of Caregiving. Two weeks later, 35 family caregivers once again completed the questionnaires. An exploratory factor analysis produced four components (personal growth, health promotion, family growth, and self-sublimation) and 26 items for Version 3 (the cumulative proportion variance was 74.14%). Subsequently, 311 family caregivers completed Version 3. A confirmatory factor analysis confirmed the structure. The goodness of fit index (GFI) = 0.921, adjusted GFI = 0.901, normal fit index = 0.951, incremental fit index = 0.990, comparative FI = 0.990, and the root mean square error of approximation = 0.02 were within the acceptable range. Criterion-related validity was equal to 0.803. The model-based internal consistency index was 0.845 and the values of the Cronbach'α coefficient of the four dimensions were 0.885-0.953. The split-half reliability was 0.92, and the test-retest reliability was 0.994. These findings provide preliminary evidence of the validity and reliability of the Caregiver Benefit Finding Scale. The scale can help researchers and clinicians to achieve a more comprehensive understanding of stroke family caregivers' positive experience. This understanding is necessary for future efforts to address issues in benefit finding by targeting the underlying mechanism and intervention.

Dataset Information

Assessing the impact on caregivers of patients with schizophrenia: psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ).

Publications

Assessing the impact on caregivers of patients with schizophrenia: psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ).

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