COSMIN database

A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients

Tanco, K., Park, J. C., Cerana, A., Sisson, A., Sobti, N., and Bruera, E.
OBJECTIVE: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

METHOD: A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

RESULTS: A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4-125): 20/59 instruments (33.9%) had
SIGNIFICANCE OF RESULTS: There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.
Palliat Support Care
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Factors influencing health status and contact with health services
Neoplasms and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
ACS - Appraisal of Caregiving Scale
BASC - Brief Assessment Scale for Caregivers
CANHELP - Canadian Health Care Evaluation Project questionnaire
Caregiver Assistance Scale
Caregivers Needs Scale
CarGOQoL - CareGiver Oncology Quality of Life questionnaire
CaSES - Caregiver Self-Efficacy Scale
CaTCoN - Cancer Caregiving Tasks, Consequences and Needs Questionnaire
CCI - Caregiving Consequences Inventory
CCID - Caregiver’s Communication with the Patient about Illness and Death
CEQUEL - Caregiver Evaluation of Quality of End-of-Life Care
CIS - Caregiving Impact Scale
CMCC - Care of My Child with Cancer
CoH-QoL-F - City of Hope Quality of Life Tool-Family version
CQOLI - Caregiver Quality of Life Index
CRA - Caregiver Reaction Assessment   
CSNAT - Carer Support Needs Assessment Tool
CTS-C - Care Task Scale–Cancer
DOII - Demand-of-Illness Inventory
FACQ-PC - Family Appraisal of Caregiving Questionnaire for Palliative Care
FAMCARE - Family satisfaction with end-of-life Care
FDMSES - Family Decision-Making Self-Efficacy Scale
FDS - Family’s Difficulty Scale
FIBI - Family Illness Beliefs Inventory
FIN - Family Inventory of Needs (versions: FIN-PC - FIN-Primary Caregivers)
FIN-H - Family Inventory of Needs–Husbands
FIN-PED - Family Inventory of Needs–Pediatrics
FIN-PED II - Family Inventory of Needs-Pediatrics II
FNA - Family Needs Assessment
FPQ - Family Pain Questionnaire
GDI - Good Death Inventory
Home Caregiver Need Survey
LSS-P - Life Situation Scale for Parents
MICCI - Morbidities Index for Caregivers of Chronic Illnesses
MM–CGI Childhood Cancer - Marwit and Meuser Caregiver Inventory Childhood Cancer
Mutual Communal Behaviors Scale
NAFC-C - Needs Assessment of Family Caregivers–Cancer
NAT-C - Needs Assessment Tool–Caregivers
OCNI - Offspring Cancer Needs Instrument
Parental Worry and Attitudes Toward Childhood Cancer
PAT 2.0 - Psychosocial Assessment Tool 2.0
PAT - Psychosocial Assessment Tool
PC-NAT - Palliative Care–Needs Assessment Tool
PCQ-C - Prostate Care Questionnaire for Carers
PCQ - Parental Cancer Questionnaire
PCSI - Parental Coping Strategy Inventory
PECI - Parent Experience of Child Illness
PedsQL-FI - Pediatric Quality of Life Inventory-Family Impact module
PIP - Pediatric Inventory for Parents
PWS-C - Psychological Well-Being Scale for Caregivers
QoLLTI-F - Quality of Life in Life-Threatening Illness–Family Carer Version
QPM-SF - Post Mortem Questionnaire–Short Form
Quality of Life–Family Caregiver Tool (QoL)
SCNS-P&C - Supportive Care Needs Survey–Partners and Caregivers
SCREEM–RES - SCREEM Family Resources Survey
SPUNS - Support Person Unmet Needs Survey
Suffering Scale of Family of Patients with Terminal Cancer
VWICS–P - Varricchio-Wright Impact of Cancer Scale–Parents