COSMIN database

The quantitative measurement of family quality of life: a review of available instruments

Hu, X., Summers, J. A., Turnbull, A., and Zuna, N.
BACKGROUND: Family quality of life (FQOL) has emerged as an important outcome of service delivery for individuals with disabilities and their families. The purpose of this review was to explore the disparity of scale development approaches between families with children with disabilities and families from other populations and identify strengths to serve as a source of recommendations to improve the measurements of FQOL in the disability field.

METHOD: We conducted a keyword search of 25 databases. Sixteen measurement tools on FQOL, family well-being and family satisfaction currently used in the disability field, healthcare field and general family studies published in journals from 1980 to 2009 were included in the analysis.

RESULTS: Three themes emerged from the detailed analysis and comparisons of the instruments: (1) description of the primary purpose and theoretical basis; (2) identification of the tool's respondents, domains, response formats and scoring strategies to assess family systems; and (3) summarisation of available psychometric information.

CONCLUSIONS: As family researchers continue their mission to conceptualise and theorise about FQOL, they should also promote the refinement of FQOL measurements and consider the implications from family instruments used in the healthcare and general family fields from the following aspects: (1) domains of FQOL; (2) units of analysis; (3) response format; (4) scoring choice; and (5) psychometric evaluation.
J Intellect Disabil Res
1365-2788 (Electronic)
Publication year:
Overall quality of life:
Overall quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Certain conditions originating in the perinatal period and related symptoms
Certain infections and parasitic diseases and related symptoms
Codes for special purposes
Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
Diseases of and symptoms related to the circulatory system
Diseases of and symptoms related to the digestive system
Diseases of and symptoms related to the ear and mastoid process
Diseases of and symptoms related to the eye and adnexa
Diseases of and symptoms related to the genitourinary system
Diseases of and symptoms related to the musculoskeletal system and connective tissue
Diseases of and symptoms related to the nervous system
Diseases of and symptoms related to the respiratory system
Diseases of and symptoms related to the skin and subcutaneous tissue
Endocrine, nutritional and metabolic diseases and related symptoms
External causes of morbidity and mortality
Injury, poisoning and certain other consequences of external causes
Mental and behavioural disorders and related symptoms
Neoplasms and related symptoms
Pregnancy, childbirth and puerperium and related symptom
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
Beach Family Quality of Life Questionnaire [alias: Beach Center Family Quality of Life Scale]
FAD - McMaster Family Assessment Device   
Family APGAR
Family Assessment Measure
Family MemberWell-Being Index
Family Quality of Life Questionnaire for Young Children with Special Needs
Family Quality of Life Survey
Family Satisfaction Scale
FDLQI - Family Dermatology Life Quality Index
FES - Family Environment Scale
Impact on Family Scale-revised
IOF - Impact on Family Scale [Alias: IFS]
Latin American Quality of Life Scale
Multidimensional Assessment of Parental Satisfaction for Children with Special Needs
QoLLTI - Quality of Life in Life-Threatening Illness (versions: QoLLTI-F – Family Carer; QoLLTI-P - patient)
QOLQ - Quality of Life Questionnaire