Perceived caregiver burden scale15 | 31-item self-reported questionnaire assesses perceived caregiver’s burden with 5 domains: impact on finances, impact on schedule, sense of abandonment, impact on health, sense of entrapment. A higher score indicates a higher level of perceived burden.1,11 |
Zarit burden interview – short form12 | 12-item self-reported instrument assesses caregiver’s burden with total score of 48. It is a shortened version of the 22-item Zarit Burden Scale. Higher score indicates higher burden.1,11 |
Zarit Burden Scale13 | 22-item self-reported instrument assesses caregiver’s burden with each item on a 9-point rating scale. A rating of 9 for each item indicates higher level of burden. The scale measures physical, emotional, and financial toll of providing care.4,12 |
Beck depression inventory (BDI-II)23 | 21-item validated instrument assesses depression (including attitude, depressive symptoms, and suicidal ideation). Each item is rated on a scale of 0 to 3. The cutoff scores are: <11, minimal depression; 12 to 19, mild to moderate depression; 20 to 35, moderate depression; and 36 to 63, severe depression.1,11,14,16 |
Beck Anxiety Inventory24 | 21-item validated instrument assesses anxiety. Score 0 to 21 indicates mild to very low anxiety; score 22 to 35 indicates moderate anxiety; score above 36 indicates severe anxiety.1,11 |
Interpersonal support evaluation list – short form inventory28 | 16-question validated questionnaire assesses level of social support perceived by caregiver. Each question has 2 answer options, “probably false” or “probably true.” Higher score is worse.1 |
Pittsburgh sleep quality index29 | 24-item questionnaire assesses quality of sleep and sleep disturbances over 1 month. 19 questions are self-reported and 5 are rated by bed partner or roommate. There are 7 component scores: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, daytime dysfunction and a global score. Higher score indicates worse quality of sleep or higher sleep disturbance.11 |
Epworth sleepiness scale30 | 8-item questionnaires on a 4-point scale with score ranging from 0 to 24 assessing daytime sleepiness. The higher the score means the higher the person’s daytime sleepiness.11 |
HRQOL: sickness impact profile14 | 136-item questionnaire used to assess patient’s physical, psychosocial, and general health outcomes. It has 2 overall domains: physical and psychosocial; 12 subcategories: sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care and movement, social interaction, alertness behavior, emotional behavior, communication. Higher score indicates a poorer level of health.11 |
Medical outcomes Study SF-3631 | 36 questions assessing 8 domains of health including physical functioning, bodily pain, role limitations due to physical condition, role limitations due to emotional health, social functioning, energy/fatigue, emotional well-being, and general health perceptions. Mean score is compared to national norms.4 |
Center for epidemiological studies depression scale32 | 20-item scale used to measure extents of depressive symptoms experienced by caregivers. Score of 0 to 15 indicates no depressive symptoms; 16 to 20 indicates mild distress; 21 to 30 indicates moderate distress; 31 and higher indicates severe distress.12,15 |
Hamilton anxiety rating scale33 | Self-report instrument with 14 items, each on a 5-point scale from 0 to 4, assess level of anxiety. A score of 18 indicates mild anxiety, a score of 25 indicates moderate anxiety, and a score of 30 is severe anxiety.12 |
Alcohol use disorders identification test34 | 10-item screening tool assesses alcohol intake, use frequency, dependency, and problems caused by drinking. The AUDIT distinguishes between at-risk users and alcohol-dependent users.12 |
Picot caregiver reward scale35 | 25-item self-report scale assesses caregiver’s perceived rewards. The PCRS measures pleasures, satisfactions, good feelings, and positive consequences connected to caregiving responsibilities. Scores range from 0 to 64, with higher scores indicating greater perceived reward.12 |
Hospital anxiety and depression scale36 | 14-item measure assesses anxiety and depression. A 4-point severity scale is used for each item. The HADS has two subscales, anxiety (HADS–A) and depression (HADS–D). Scores higher than or equal to 11 on either scale indicate a definitive anxiety and/or depression.13,17,18 |
Caregiver burden scale (Brazilian version)37 | 22 questions used to assess caregiver’s burden with 5 subscales: general strain, isolation, disappointment, emotional entanglement, environment. Higher scores indicate higher burden. |
Inventario de sintomas de stress para adultos de Lipp38 | Instrument used to assess stress based on a 4‐phase model and the effects of stress in the somatic and cognitive domains. First phase is the alert phase; second phase is the resistance phase; third phase is almost-exhaustion phase and fourth phase is exhaustion phase. |
Spielberger state trait anxiety inventory-state form39 | 20-item self-report measure assesses state-related anxiety. Participants rate descriptive statements on their emotion with a 4-point scale (not at all to very much). Scores range from 20-80. Higher score indicates elevated anxiety. Normative data are used to categorize clinically elevated anxiety (STAI >48). |
Medical coping modes questionnaires40 | 20-item self-report questionnaire assesses coping mechanism of caregivers among 4 categories: resignation, avoidance, social support seeking, information seeking. A 5-point scale is used to rate each item. Higher scores indicate higher use of each coping mechanism. |
Scale for caregiver burden44 | 20-item self-report questionnaire measures objective and subjective burden. 10 items measure objective burden which reflects the amount of practical caregiving based on severity of patient’s condition and functional needs. 10 items measure subjective burden which reflects caregiver’s perceived distress due to caregiving tasks and quantity of caregiving activities. Scores range from 0 to 40 for each subscale with higher scores indicating more burden. |
Marlowe Crowne social desirability scale-short form45 | 13 scored items separated into 2 sets measure an individual’s level of socially acceptable and/or unrealistic responses. The scale assesses the degree to which participants providing responses that are favored by others such as over reporting positive attributes or underreporting negative attributes. Score range from 0 to 13 with higher scores indicating higher level of socially desirable responding. Normative data is used to classify individuals who respond in often unrealistic, socially desirable way (MCSDS>7). |
SD-36v2 health survey46,47 | Measures Quality of Life (QOL) by assessing perceptions of health in eight domains: physical functioning, role functioning-physical, role functioning-emotional, vitality, pain, general health, social functioning, and mental health. Scores range from 0-100. Higher scores reflect higher QOL. SD-36 has 2 component scores – physical component summary (PCS) and mental component summary (MCS).19 |
Quality of life inventory48 | 32 statements on 16 life domains which reflect life satisfaction. 16 Life domains include health, self-esteem, goals-and-values, money, work, play, learning, creativity, helping, love relationship, friendships, relationship with children, with relatives, home, neighborhood, community. Higher scores indicate higher life satisfaction.19 |
Profile of mood states-short form49 | Assesses mood disturbance. Caregivers read descriptive adjective and rate how they feel about them on a 5-point scale. Form provides total score and factor scores: tension-anxiety, depression-dejection, anger-hostility, vigor-activity, fatigue-inertia, confusion-bewilderment. Higher score means more mood disturbance.19 |
Caregiver strain index 50 | 13-item questionnaire to assess caregiver burden. Higher scores mean more strain. If caregiver answers “yes” to 7 or more items, clinically significant caregiver strain is indicated.19 |
Caregiver benefit index30,51 | Examines benefits perceived by transplant caregivers in 12 areas. Higher scores mean more benefits. Questions focus on benefit gained from helping patient, spending time with patients, personal growth, interpersonal benefits19 |
Miller social intimacy scale52 | Assesses caregiver’s perceived closeness to their spouse. It provides two intimacy subscales: Frequency and Intensity and culminated in a total intimacy score. Higher score indicates greater intimacy.19 |