Background
Methods
Search stage 1: Identifying candidate instruments
Study selection criteria
Search stage 2: Identifying evidence of the psychometric properties of candidate instruments in the cancer caregiver population
Study selection criteria
Citation chasing
Data extraction
Evidence for psychometric performance
Examination of instrument content and categorisation into related domains
Results
Name and acronym | Initially developed in cancer population? | Key reference paper | Purpose of measure | Initial test population | Number of items | Completion time | Recall period | Response options | Primary area of measurement | Domains assessed (author identified) |
---|---|---|---|---|---|---|---|---|---|---|
Appraisal of caregiving scale (ACS) | Y | Oberst et al. [13] | To assess the intensity of four possible appraisals of caregiving | 47 family caregivers of adults receiving radiotherapy | 27 (original scale, 53) | Not stated | 7 days | 5-point Likert point scale 1 = strongly disagree to 5 = strongly agree | Appraisal | Threat (13 items), benefit (6 items), general stress (8 items) [original scale threat (15 items), harm/loss (15 items), challenge (15 items), benign (8 items)] |
Brief Assessment scale for Caregivers of the Medically Ill (BASC) | N | Glajchen et al. [12] | To develop a brief validated instrument that can measure caregiver distress and burden in a clinical setting | Caregivers of patients with cancer (n = 56), neurological conditions (n = 16), mental health (n = 12) musculoskeletal (n = 2) COPD (n = 1) multiple conditions (n = 15) | 14 | Not stated | 1 month | Varied: all questions had a four-point scale (not at all—a lot; not at all distressed—a lot of distress; agree a lot—disagree a lot). Ten items had an additional option of “does not apply” | Distress and subjective burden | Negative personal impact (5 items), positive personal impact (3 items), other family members (2 items), medical issues (3 items), concerns about loved ones (2 items) [identified from factor structure rather than specifically stated as domains, one item loads on two factors] Negative personal impact identified as independent subscale |
Caregiver Quality of Life Index—Cancer (CQOLC) | Y | Weitzner et al. [14] | Quality of life instrument for the family caregiver of persons with cancer | 263 primary family caregivers of lung, breast or prostate cancer patients | 35 | 10 min | 7 days | 5-point Likert-type scale ranging from 0 = not at all to 4 = very much | Multidimensional quality of life | Burden (10 items), financial (3 items), disruptiveness (7 items), positive adaptation (7 items) [identified from factor structure rather than specifically stated as domains—not all items load] |
Caregiver reaction assessment (CRA) | N | Given et al. [15] | Multidimensional instrument to assess the reactions to caring for a family member | 276 caregivers to people with cancer, 101 caregivers to people with Alzheimer’s disease | 24 | <10 min | Asked to rate the perceived impact of caregiving but not a specified timescale | 5-point Likert-type scale ranging from 1 = strongly disagree to 5 = strongly agree | Multidimensional measure of reaction to caring for a family member | Financial problems (3 items), disrupted schedule (5 items), lack of family support (5 items),health problems (4 items), self-esteem (7 items) |
Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC) | Y | Cooper et al. [10] | Provides a measure of the family’s appraisal of caregiving that can be used in clinical assessment | 160 family caregivers of a relative with cancer receiving home-based palliative care | 25 | Not measured (completed in care agency where they were distributed or at home) | 2 weeks | 5-point Likert-type scale 1 = strongly disagree to 5 = strongly agree | Appraisal | Caregiver strain (8 items), caregiver distress (4 items), family well-being (6 items), positive care appraisals (7 items) |
Quality of Life in Life-Threatening Illness—Family Carer Version (QOLLTI-F) | Y | Cohen et al. [11] | Self-report instrument to measure quality of life in carers of people receiving palliative care | 245 carers of cancer patients including lung (22 %), GI (18 %), genitourinary (15 %) and other cancers (45 %) | 16 | Not stated | 2 days (48 h) | 11-point scale with a range of response options | Multidimensional quality of life | Financial (1 item), state of carer (5 items), patient well-being (1 item), quality of care (2 items), carer’s outlook (3 items), environment (2 items), relationships (2 items) |
Quality of Life—Family version (formerly Quality of Life Family Caregiver Tool) (QOL-F) | Y | Ferrell et al. [16] | To provide a parallel outcome measure to compare patient and family caregiver well-being | 231 family caregivers of patients with cancer pain receiving home care | 37 (original scale 27) | Not stated | At this time | 11-point scale with a range of response options | Multidimensional quality of life | Social concerns (9 items), physical well-being (5 items), psychological well-being (16 items), spiritual well-being (7 items) |
Zarit Burden Interview (ZBI) | N | To assess the level and sources of burden experienced by caregivers to facilitate the development of interventions to reduce burden | 29 primary caregivers to people with senile dementia | 22 (reduced from an initial 29) | Not stated | Asked to rate the perceived impact of caregiving but not a specified timescale | 5-point Likert-type scale ranging from never = 0 to nearly always = 4 | Subjective burden | Questions were selected to include caregiver’s health, psychological well-being, finances, social life and the relationship between the caregiver and the patient. At least 2 factors; personal strain and role strain have been identified within the general construct of subjective burden measured by this scale |
Measure | Version | First author | Year | Study aim | Population |
N
| Setting/country | Administration |
---|---|---|---|---|---|---|---|---|
ACS | 27-item | Lambert [21] | 2015 | To examine the psychometric properties of the ACS | Adult caregivers of advanced breast, colorectal, lung or prostate cancer diagnosed in the last six months | 484 | USA | Reports baseline data from 484 participants and T2 data from 163 participants. Competed alongside other measures of caregiver burden, depression, benefit finding, coping, dyadic support and hopelessness |
ACS | Original 53-item (reduced to 27 after this analysis) | Oberst [13] | 1989 | To examine family caregiving demands and caregivers’ appraisals of the caregiving experience | Family caregivers of adults receiving radiotherapy as outpatients | 47 | USA | Single time point alongside a measure of time spent in caregiving (also a new measure) |
BASC | Original 43-item (reduced to 14 items after this analysis) | Glajchen [12] | 2005 | To develop a brief validated instrument that can measure caregiver distress and burden in a clinical setting | Caregivers of patients with cancer (n = 56), neurological conditions (n = 16), mental health (n = 12) musculoskeletal (n = 2) COPD (n = 1) multiple conditions (n = 15) | 102 | USA | Single time point alongside validation instruments measuring objective and subjective burden, spiritual health, physical health, satisfaction with patient care, social support, unmet need, mental health and impact of caregiving on quality of life (single item) |
CQOLC | 35-item | Weitzner [14] | 1999a | To evaluate the reliability and validity of the caregiver quality of life index—cancer | Primary family caregivers of patients with breast, lung or prostate cancer | 263 | USA | 180 participants completed the questionnaires once; 83 (different) participants completed the questionnaires on two occasions 14 days apart. Questionnaire packs also include measures of perceived health and functioning, depression, anxiety, burden, social support, social desirability and a single-item measure for proxy reporting of the patient’s physical status and ambulatory ability |
CQOLC | 35-item | Weitzner [22] | 1999b | To revalidate the caregiver quality of life instrument in home hospice care and demonstrate generalisability | Family members of cancer patients who were receiving hospice services at home | 239 | USA | Participants completed the questionnaire at a single time point along with a measure of perceived health and functioning (SF-36), a four-item quality of life instrument using a visual analogue scale and a single-item measure for proxy reporting of the patient’s physical status and ambulatory ability |
CRA | 40-item (reduced to 24 in this analysis) | Given [15] | 1992 | Exploratory and confirmatory factor analysisa of new measure, test factorial invariance and construct validity | Caregivers of patients with physical impairment (N = 267), Alzheimer’s disease (N = 211), cancer (N = 276) | 754 | USA | Most participants completed at a single time point. 193 participants completed at 3 time points, baseline, 6 months and 12 months. CRA was completed alongside a measure of depression and activities of daily living |
FACQ-PC | 26-item (reduced to 25 items after this analysis) | Cooper [10] | 2006 | To develop and validate a scale designed to measure the positive and negative components of caregiving for family caregivers of people receiving palliative care at home | Adult family caregivers of a relative receiving palliative care | 160 | Australia | Single time point. 160 caregivers completed the FACQ-PC, a subsample of 56 also completed validation measures of family functioning, positive and negative effect and subjective burden |
QOL-F | 37-item version | Sherman [23] | 2006 | To establish the reliability of the quality of life instrument based on patients with AIDS, patients with cancer and AIDS and cancer family caregivers. To identify differences in quality of life between patients with AIDS and cancer and their family caregivers | 81 family caregivers (38 cancer, 43 AIDS) 101 patients (38 cancer, 63 AIDS) | 38 (only data on cancer caregivers used in this review) | USA | Presents data from baseline and month 3 of a longitudinal study. Only the target instrument appears to have been administered |
QOLLTI-F | 24-item (reduced to 16 items after this analysis)b
| Cohen [11] | 2006 | To develop and test measures of quality of life for family caregivers of palliative care patients | Primary caregivers of palliative care patients | 245 | Canada | Data collected at three time points. Measure completed alongside a two-item global measure of QoL |
ZBI—multiple short versions | 22-item | Higginson [20] | 2010 | To assess the validity of 6 short-form versions of the Zarit Burden Interview in 3 caregiver populations | Caregivers of patients with advanced cancer (n = 105), dementia (n = 131) acquired brain injury (n = 215) | 105 (only data on cancer caregivers used) | UK | Data presented from one time point only. Short forms of ZBI compared with 22-item version as gold standard |
Psychometric performance
Measure and version | References | Content validitya
| Criterion validity | Structural validity | Construct validity | Test–retest reliability | Internal consistency | Responsiveness | Precision | Acceptability |
---|---|---|---|---|---|---|---|---|---|---|
ACS (27 item) | Lambert et al. [21] | ~ | + | ~ | 0 | + | 0 | 0 | 0 | |
ACS (original 53 item) | Oberst et al. [13] | ~ | 0 | 0 | 0 | N/A | ~ | N/A | 0 | + |
BASC | Glajchen et al. [12] | + | 0 | ~ | ~ | N/A | + | N/A | 0 | 0 |
CQOLC | Weitzner et al. [14] | + | 0 | 0 | + | + | + | ~ | 0 | ~ |
CQOLC | Weitzner and McMillan [22] | 0 | 0 | + | N/A | + | – | 0 | ~ | |
CRA | Given et al. [15] | + | 0 | + | + | 0 | + | 0 | 0 | ~ |
FACQ-PC | Cooper et al. [10] | ~ | 0 | + | ~ | N/A | + | N/A | 0 | 0 |
QOL-Fb (37 item) | Sherman et al. [23] | 0 | 0 | 0 | 0 | + | 0 | 0 | 0 | |
QOLLTI-F | Cohen et al. [11] | + | + | + | 0 | ~ | ~ | ~ | ~ | ~ |
ZBI—multiple short versionsb
| Higginson et al. [20] | + | 0 | + | N/A | + | N/A | 0 | 0 |
Content validity
Criterion validity
Structural validity
Construct validity: hypothesis testing
Internal consistency
Test–retest reliability
Responsiveness
Precision
Acceptability
Examination of instrument content and categorisation into related domains
Overarching theme | Specific domain | ACS | BASC | CQOLC | CRA | FACQ-PC | QOL-F | QOLLTI-F | ZBIa
|
N of measures (total N of items) | Example items (measure and subscale/factor name where relevant) |
---|---|---|---|---|---|---|---|---|---|---|---|
Health of caregiver | Psychological health of caregiver | 4 | 1 | 6 | 2 | 7 | 2 | 6 (22) | Over the past 2 days (48 h) emotionally I felt…(QOLLTI-F carer’s own state) How much have you been depressed about X’s illness? (BASC) | ||
Physical health of caregiver | 2 | 1 | 4 | 2 | 5 | 1 | 1 | 7 (16) | As a caregiver I feel my own health has suffered (FACQ-PC—caregiver strain) I am healthy enough to care for X (CRA—health problems) | ||
Sexual activity | 1 | 1 | 2 (2) | I am satisfied with my sex life (CQOLC) | |||||||
Lifestyle disruption | Lifestyle disruption | 3 | 1 | 5 | 3 | 1 | 1 | 6 (14) | Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? (ZBI) I have eliminated things from my schedule since caring for X (CRA—disrupted schedule) | ||
Impact on paid employment | 1 | 1 | 2 (2) | To what degree has your family member’s illness or treatment interfered with your employment? (QOL-F—social concerns) | |||||||
Financial implications | 1 | 3 | 3 | 1 | 1 | 1 | 6 (10) | How much financial burden resulted from your family member’s illness or treatment?(QOL-F—social concerns) | |||
Time for self, social life and leisure | 2 | 1 | 1 | 2 | 2 | 2 | 2 | 5 | 8 (17) | I have had to give up my social life to care for X (FACQ-PC—caregiver strain) Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself? (ZBI) | |
Relationships | Impact on relationship with care recipient | 1 | 2 | 1 | 1 | 1 | 2 | 6 (8) | Caring for X has made me feel closer to him/her (FACQ-PC—positive caregiving appraisal) Distress of seeing how much X’s illness has changed your relationship (BASC) | ||
Relationships with other family members and friends: | |||||||||||
Communication | 1 | 4 | 1 | 3 (6) | Our family is able to talk about our feelings with each other (FACQ-PC—family well-being) | ||||||
Relationships | 3 | 2 | 1 | 1 | 1 | 5 (8) | My relationships with friends and family are not affected by this situation (ACS—general stress) | ||||
Support | 3 | 5 | 1 | 1 | 4 (10) | It is very difficult to get help from my family in taking care of X (CRA—lack of family support) | |||||
Impact on other family members | 1 | 1 | 2 (2) | I worry about the impact my loved one’s illness has had on my children or other family members (CQOLC—burden) | |||||||
Well-being | Confidence, self-esteem and self-efficacy | 4 | 1 | 3 | 7 | 3 | 2 | 4 | 7 (24) | Taking care of X makes me feel good about myself (BASC) Do you feel you could do a better job in caring for your relative? (ZBI) | |
Spiritualityb
| 1 | 3 | 1 | 3 (5) | Over the past 2 days (48 h) I was comforted by my outlook on life, faith or spirituality (QOLLTI-F—carer’s outlook) | ||||||
Bringing purpose and meaning to life | 2 | 1 | 2 | 3 | 2 | 2 | 1 | 7 (13) | I am glad my focus is on getting my loved one well (CQOLC—positive adaptation) Taking care of X has brought meaning to my life (BASC) | ||
Managing the situation | Coping | 1 | 1 | 1 | 1 | 1 | 5 (5) | The responsibility I have for my loved one’s care at home is overwhelming (CQOLC—disruptiveness) | |||
Concerns for the future | 4 | 1 | 1 | 3 (6) | How much uncertainty do you feel about your family member’s future? (QOL-F—spiritual well-being) I worry that in the future I will not be able to help the person needing my care (ACS—threat) | ||||||
Concerns/distress about the health/care of recipient | 3 | 6 | 6 | 4 | 4 (19) | I fear the adverse effects of treatment on my loved one (CQOLC—burden) Over the past 2 days (48 h) the quality of health care we received was….(QOLTTI-F—quality of care) | |||||
Burden | 1 | 1 | 1 | 2 | 4 (5) | Overall how burdened do you feel caring for your relative? (ZBI) | |||||
Total number of items | 27 | 14 | 35 | 24 | 25 | 37 | 16 | 16 | 194 |