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Table 7 Summary and assessment of development papers for the instruments included in the review

From: Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN

Instrument Construct definition Theory, model, conceptual framework or rationale for construct Development study
COSMIN quality rating Were carers involved? (Y/N)
BDI [62]a “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” Unclear Inadequate N
CarerQoL [63] "Subjective [caregiver] burden is a measure of how straining the caregiver experiences the care giving task to be." "Existing burden measures were studied in order to determine which dimensions could be used to describe the situation surrounding the burden experienced by the caregiver (…) We set out to develop an instrument that was capable of describing the 'care profile' as well as valuing the impact on the caregiver's overall quality of life." Inadequate N
CSI [64, 65] "By strain we mean those enduring problems that have the potential for arousing threat, a meaning that establishes strain and stressor as interchangeable concepts." Unclear Inadequate Y
CSI+ [66] Assumed same as CSI and in addition: "Positive aspects of care (PACs) are an umbrella term referring to a variety of feelings about, and reactions to, caring. PACs have been described in a number of different ways: gain, satisfaction, rewards, pleasures, positive appraisal, enjoyment, growth, meaning and uplifts." Unclear Inadequate N
CWBS [67] "Caregivers' satisfaction with basic human needs and activities of daily living" "The health-strength model described by Weick (1986) and Weick and Freeman (1983) (…) The development of the well-being scale for caregivers began by examining the Weick and Freeman (1983) health menu (…) The questionnaire was also based on Maslow's hierarchy of needs (1968) and scales developed by Barusch (1988), McCubbin (1982), Slivinske and Fitch 1987 and George and Gwyther (1986)" Inadequate N
DUKE [68,69,70,71] "Functional health status" "The principal measures developed for the DUKE are based upon the three WHO dimensions: physical, mental, and social health. Items were selected from the DUHP first to fit these constructs, and then rearranged to form the other measures" Inadequate N
EQ-5D-3L [72, 73]a “Health-related quality of life” “Generic measure should aim to capture physical, mental, and social functioning [6] (…) People have to weigh up the very diverse attributes of health to determine which, on balance, seems best, it should be possible to elicit such overall valuations by some suitable investigatory method which generates a single index value for each health state” Inadequate N
EQ-5D-5L [61] "Health status" Assumed same as 3L Doubtful Unclear
ESS [74] "Sleep propensity" "The concept of the ESS was derived from observations about the nature and occurrence of daytime sleep and sleepiness." Inadequate N
ESSI [75, 76] "Social support" Unclear Inadequate N
FAPGAR [77] "A patient's view of the functional state of his or her family" "In order to establish the parameters by which a family’s functional health can be measured, five basic components of family function were chosen. These components, which are defined in Table 1. were elected by the author since they appear to represent common themes in the social science literature that deals with families." Inadequate N
FPQ [78, 79] "Family burden and relatives' attitudes" "The relevant theory is now commonly known as Expressed Emotion (EE) (Brown et al., 1972; Vaughn and Leff, 1976a; Leff and Vaughn, 1985) (…) Most of these studies followed the Hoenig & Hamilton (1966, 1969) distinction between «objective» burden (practical problems and difficulties, e.g. effects on relatives' finances, on work, on social life) and «subjective» burden (the subjective distress which relatives attribute to the presence of the patient in their life). " Inadequate N
FSFI [80] "Female sexual arousal and other relevant domains of sexual functioning in women" "Recently, an international, multi-disciplinary consensus development conference was held in the United States to develop a new classification system to apply to all forms of female sexual dysfunction regardless of etiology (International Consensus Development Conference on Female Sexual Dysfunctions: Definitions and Classifications, in press). This panel recommended maintaining four major categories of dysfunction (desire disorders, arousal disorder, orgasmic disorder, and sexual pain disorders), as described in the DSM-IV and ICD-10 (International Classification of Diseases) (World Health Organization, 1992)." Inadequate N
HADS [81]a “depression subscale were largely based on the anhedonic state (…) psychic manifestations of anxiety neurosis” Unclear Inadequate N
K6 [82] "Non-specific psychological distress" "The conceptualization of this task relied importantly on the work of Dohrenwend and his colleagues (Dohrenwend et al. 1980; Link & Dohrenwend, 1980). Their review of screening scales of nonspecific psychological distress showed that these scales typically include questions about a heterogeneous set of cognitive, behavioural, emotional and psychophysiological symptoms that are elevated among people with a wide range of different mental disorders." Inadequate N
PAS [83] "We previously defined adaptation as the dynamic and multidimensional process of coming to terms with the implications of a health threat and the outcomes of that process (…) the cognitive and emotional outcomes of coping. We strived to select key components of adaptation, thereby simplifying a complex outcome." "Both the Transactional Theory of Stress and Coping [3] and the Cognitive Theory of Adaptation [6] were used to guide the selection of four domains of adaptation included in the PAS. The domains are coping efficacy, self-esteem, spiritual/existential well-being, and social integration. Coping appears as a key mediator of adaptation in both theories and informed our choice of coping efficacy as the first domain. Taylor’s theory further elucidates a key role for selfesteem, 'meaning making' that leads to existential well-being, and re-engagement in social encounters." Inadequate N
PedsQL FIM [84] Unclear "A multidimensional instrument that could stand alone, or be easily integrated into the PedsQL™ Measurement Model [10]. The PedsQL™ Measurement Model includes not only generic health-related quality of life [11,12,13] and disease-specific measurement instruments [14,15,16,17,18], but also generic measures of fatigue [15, 19], healthcare satisfaction [20, 21] and evaluations of the healthcare built environment [21]." Inadequate N
PPC [51, 85] "Perceived personal control is 'the belief that one has at one’s disposal a response that can influence the aversiveness of an event' [Thompson, 1981]." "Lazarus and Folkman’s Transactional Model of Stress and Coping [Folkman, 1984] theorizes that the perception of stress depends on a number of subjective, cognitive judgments that arise from the dynamic interaction of a person and his or her environment (…) We used a stress and coping perspective to understand the relationships among parental uncertainty, perceived control, and the contribution of the genetic counselor to learn about the influences of the health care provider within situations of uncertainty." Inadequate N
PSQI [86] "'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." Unclear Inadequate N
PSS [87, 88] "The degree to which situations in one's life are appraised as stressful (…) designed to tap the degree to which respondents found their lives unpredictable, uncontrollable, and overloading" "It is a common assumption among health researchers that the impact of 'objectively' stressful events is, to some degree, determined by one's perceptions of their stressfulness, e.g., see Lazarus (1966, 1977) (…) This implication is counter to the view that persons actively interact with their environments, appraising potentially threatening or challenging events in the light of available coping resources (Lazarus, 1966, 1977). From this latter perspective, stressor effects are assumed to occur only when both (a) the situation is appraised as threatening or otherwise demanding and (b) insufficient resources are available to cope with the situation." Inadequate N
QRS [89, 90] "Burden imposed on the family [and] the family's emotional response to that burden" "Family stress is a product of innumerable variables: degree of handicap or illness, personal resources of family members, financial resources, community support, and so forth. In addition to identifying the relevant variables that contribute to or ameliorate stress in families caring for ill or disabled family members, it is important to measure the family's response to those stressors" Inadequate N
SCL-90-R [91, 92] "Symptomatology and psychological distress" Unclear Inadequate N
SF-12 [93, 94] "Health status" Unclear Inadequate N
SF-36 [95,96,97,98]a “‘Health’, eight concepts: physical functioning, social and role functioning, mental health, general health perceptions, bodily pain, and vitality.” “The eight health concepts were selected from 40 concepts included in the Medical Outcomes Study (MOS). Those chosen represent the most frequently measured concepts in widely used health surveys and those most affected by disease and treatment.68,70 SF-36 items also represent multiple operational indicators of health, including behavioral function and dysfunction, distress and well-being, objective reports and subjective ratings, and both favorable and unfavorable self-evaluations of general health status.68 Inadequate N
SNQ [79] Unclear Unclear Inadequate N
STAI-X [99] "State anxiety (A-State) is conceptualized as a transitory emotional state or condition of the human organism that is characterized by subjective, consciously perceived feelings of tension and apprehension, and heightened autonomic nervous system activity. A-States may vary in intensity and fluctuate over time. Trait anxiety (A-Trait) refers to relatively stable individual differences in anxiety proneness, that is, to differences between people in the tendency to respond to situations perceived as threatening with elevations in A-State intensity." "The conceptions of trait and state anxiety that guided the construction of the STAI are considered in greater detail by Spielberger (1966a)" Inadequate N
SWLS [100]a “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 Inadequate N
WHOQOL-BREF [101,102,103,104]a “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).” “An initial step involved achieving consensus on a working definition of quality of life as a person's perception of his/her position in life within the context of the culture and value systems in which he/she lives and in relation to his/her goals, expectations, standards, and concerns (…) This definition highlights the group's commitment to an essentially subjective concept that encompasses the multidimensional nature of quality of life (physical, psychological, social, etc.).” Doubtful Y
WAC-DBMD [51] "Designed to assess amount, frequency, and intensity of DBMD-specific care worry" Unclear Inadequate N
ZBI (4 item) [105] "Burden" Unclear Inadequate N
ZBI (12 item) [105] "Burden" Unclear Inadequate N
ZBI (22 item) [106] "Burden" Unclear Inadequate N
  1. Citations next to instrument name are instrument development papers
  2. aData already extracted and adapted from Powell et al. 2020, including additional reference(s) for development studies not identified in this review [20]