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Table 2 Characteristics and assessment of development papers for measures included in the review

From: Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments

PROM Reference(s) Original language Construct definition Target population Intended context of use Concept elicitation study
COSMIN quality rating Were patients involved?
BDI Beck et al. 1961 [86] English (US) “the items were chosen on the basis of their relationship to the overt behavioral manifestations of depression and do not reflect any theory regarding the etiology or the underlying psychological processes in depression” Adult patients with suspected symptoms of depression Quantitative assessment of the intensity of depression in diagnostic and research settings Inadequate No
CALI Palermo et al. 2004 [87] English (US) “functional impairment, defined as difficulty in performing age-appropriate physical, mental, and social activities in daily life due to physical health status (…) functional impairment due to pain (…) specific areas of functioning that are important to children and adolescents with recurrent and chronic pain” School-age children and adolescents with recurrent and chronic pain Research and clinical care Doubtful Yes
DCGM-37 Petersen et al. 2005 [88]
Ravens-Sieberer et al. 2007 [89]
English (UK) “a multidimensional construct with social, physical, emotional, and functional domains” Children aged 4–7 years and 8–16 years with chronic health conditions Clinical studies or surveys Doubtful Yes
EQ-5D-3La EuroQol Group 1990 [6]
Brooks et al. 1996 [7]
Multiple, including English (UK) “Health-related quality of life” “Large-scale surveys of the community and (…) for use in postal surveys” “Complement other quality of life measures, collection of common data set for reference. Generate cross-national comparisons of health state valuations.” Inadequate No
FSS Krupp et al. 1989 [90] English (US) “Fatigue” Patients with “clinical disorders” Clinical research studies and surveys Inadequate No
GAD-7 Spitzer et al. 2006 [91] English (US) “We first selected potential items for a brief GAD [Generalized Anxiety Disorder] scale (…) that reflected all of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) symptom criteria for GAD and (…) on the basis of review of existing anxiety scales.” General adult population Clinical practice and research Inadequate No
HADS Zigmond & Snaith 1983 [92] English (UK) “depression subscale were largely based on the anhedonic state (…) psychic manifestations of anxiety neurosis” Patients under investigation and treatment in medical and surgical departments in non-psychiatric hospital departments Clinical/screening use within non-psychiatric hospital departments Inadequate No
HUI-2 / HUI-3 (15Q) Feeny et al. 1995 [93]
Torrance et al. 1996 [94]
English (US) “The HUI Mark II and Mark III systems are based on concepts of functional capacity rather than performance (…) generic health profile measures that also permit the computation of a single summary score quantifying health-related quality of life” Originally survivors of childhood cancer (HUI-2), extended to adults Clinical evaluative and population health survey studies, in clinical trials, and cost-utility analyses Inadequate Unknown
INQoL Vincent et al. 2007 [95] English (UK) “The structure of INQoL was based on the ICIDH-2 model of disease incorporating the concepts of Impairment, Activities, and Participation.” Adults with neuromuscular disorders (16+ years) Clinical and research use Inadequate Yes
KIDSCREEN-52 Ravens-Sieberer et al. 2001 [96]
Ravens-Sieberer et al. 2005 [97]
Detmar et al. 2006 [98]
Multiple, including English (UK) “Health-related quality of life is described as a multidimensional construct covering physical, emotional, mental, social, and behavioral components of well-being and function as perceived by patients and/or individuals (…) agreement was reached that the questionnaire should aim to measure HRQOL as a generic construct in largely healthy children, thus more emphasis was given to the inclusion of psychosocial domains, and less to domains of physical functioning or symptoms such as pain.” Healthy and chronically-ill children and adolescents between 8 and 18 years Epidemiological and paediatric studies, clinical settings (healthcare system), and health services research Adequate Yes
KIDSCREEN-27 Ravens-Sieberer et al. 2006 [99] Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Adequate Yes
KIDSCREEN-10 Ravens-Sieberer et al. 2006 [99] Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Assumed the same as KIDSCREEN-52 Adequate Yes
LSIA Reid & Renwick 1994 [54] English (US) “quality of life is to conceptualize it as a subjective phenomenon. Specifically, it is viewed in terms of the individual’s feelings and evaluations of his or her life circumstances. Many researchers who study quality of life within this perspective emphasize the importance of measuring the individual’s degree of life satisfaction. In other words, they are interested in how pleased an individual feels about particular aspects of his or her life” “Individuals between the ages of 12 and 19 years who have DMD” Research instrument and potentially useful as a clinical measure Doubtful Yes
MDCHILD Propp, 2017 [100]
Propp et al. 2019 [8]
English (UK) “Health-related priorities for children with DMD (…) defined as concerns, desires, and expectations arising from the lived experience of that condition” Children with DMD (assumed 5–18 years) Cohort studies, clinical trials, and clinical decision-making Doubtful Yes
PedsQL 3.0 DMD Uzark et al. 2012 [62] English (US) “Health-related quality of life (QoL), a multidimensional construct that includes physical, psychological, and social functioning, has emerged as an important outcome in pediatric populations with chronic health conditions.” Children with DMD from 2 to 18 years Assumed the same as PedsQL 4.0 GCS Doubtful Yes
PedsQL 3.0 MFS Varni et al. 2002 [101] English (US) “designed to measure child and parent perceptions of fatigue in pediatric patients” Assumed the same as PedsQL 4.0 GCS “may be utilized as outcome measures in pediatric cancer clinical trials, research, and clinical practice for HRQOL” Inadequate Yes
PedsQL 3.0 NMM Iannaccone et al. 2009 [102] English (US) “HRQOL is a multidimensional construct, consisting at the minimum of physical, psychological (including emotional and cognitive), and social health dimensions delineated by the World Health Organization. HRQOL has emerged as the most appropriate term for quality of life dimensions that represent a patient’s perceptions of the impact of an illness and its treatment on their own functioning and well-being and which are within the scope of healthcare services and medical products.” Children and young people with neuromuscular disorders, in particular spinal muscular atrophy Assumed the same as PedsQL 4.0 GCS Doubtful Yes
PedsQL 4.0 GCS Varni et al. 1999 [103] English (US) “The PedsQL measures the patient’s and the parent’s perceptions of the patient’s HRQOL, as defined in terms of the impact of disease and treatment on an individual’s physical, psychological, and social functioning, and by disease/treatment-specific symptoms.” Children aged 8–18 across various pediatric chronic health conditions Epidemiological studies, clinical trials, and performance improvement studies Doubtful Yes
PedsQL 4.0 SF-15 Varni et al. 1999 [103] English (US) Assumed the same as PedsQL 4.0 GCS Assumed the same as PedsQL 4.0 GCS Assumed the same as PedsQL 4.0 GCS Doubtful Yes
PHQ-9 Spitzer et al. 1999 [104]
Kroenke et al. 2001 [105]
English (US) “Depression (…) using diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition (DSM-III-R) and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV).” General adult population Clinical practice and research Inadequate No
PODCI Daltroy et al. 1998 [106] English (US) “The POSNA outcomes instrument scales assess upper extremity function, transfers and mobility, physical function and sports, comfort (painfree), happiness and satisfaction, and expectations for treatment. A POSNA global scale combines the three function subscales and comfort.” Children aged 2–18 years with musculoskeletal disorders “Patient-based instrument” Doubtful Yes (assumed)
PSQI Buysse et al. 1989 [107] English (US) “sleep quality is a readily accepted clinical construct, it represents a complex phenomenon that is difficult to define and measure objectively. ‘Sleep quality’ includes quantitative aspects of sleep, such as sleep duration, sleep latency, or number of arousals, as well as more purely subjective aspects, such as “depth” or “restfulness” of sleep” Clinical/psychiatric populations Psychiatric clinical practice and research activities Doubtful No
SDQ Goodman 1997 [108] English (UK) “young people’s behaviours, emotions, and relationships” Children and young people (aged 4–16 years) “to meet the needs of researchers, clinicians, and educationalists” Inadequate No
SF-36 v1.0a Ware & Sherbourne 1992 [109]
Hays et al. 1993 [110]
Jenkinson et al. 1999 [111]
Ware 2000 [112]
English (US) ““Health”, eight concepts: physical functioning, social and role functioning, mental health, general health perceptions, bodily pain, and vitality.” “General population and patients” “Clinical practice and research, healthy policy evaluations, and general population surveys” Inadequate No
SWLS Diener et al. 1985 [113] English (US) “Life satisfaction refers to a cognitive, judgmental process. Shin and Johnson (1978) define life satisfaction as “a global assessment of a person’s quality of life according to his chosen criteria” (p. 478)” Unclear Unclear Inadequate No
WHOQOL-BREF WHOQOL Group 1994 [114]
WHOQOL Group 1995 [115]
Skevington et al. 1997 [116]
WHOQOL Group 1998 [117]
Multiple, including English (UK) “It is a broad ranging concept incorporating, in a complex way, the person’s physical health, psychological state, level of independence, social relationships, personal beliefs, and relationship to salient features of the environment (…) At minimum, quality of life includes the following dimensions: physical (individuals’ perception of their physical state), psychological (individuals’ perception of their cognitive and affective state) and social (individuals’ perception of the interpersonal relationship relationships and social roles in their life). (…) The WHOQOL includes a spiritual dimension (the person’s perception of ‘meaning in life’, or the overarching personal beliefs that structure and qualify experience).” “assess the quality of life of chronic disease sufferers, informal caregivers of the sick and disabled, people living in high-stress conditions like refugees, and ‘healthy’ people” “in routine clinical work, large scale epidemiological studies and in clinical trials” Doubtful Yes
  1. aPROM development information from prior COSMIN review [118], not re-extracted or re-rated in this review, based on COSMIN guidance [13]. PROM = patient reported outcome measure; COSMIN = COnsensus-based Standards for the selection of health Measurement INstruments