Appendix. Assessment of the Schedule for Evaluation of Individual Quality of Life – Direct Weighting (SEIQoL-DW) in empirical research
Author / Applicationa. Study population (N)
b. Setting
/ Design
a. Study design
b. Response rate / Objective
a. Overall/major objective
b. Hypothesis / Administration procedure
a. Performed procedure
b. Use of prompt list
c. Mode of administration / Feasibility
a. Time for completion
b. Missing data
c. Patient/interviewer comments
Bain et al. 2003 [48] / a. n=88; mean age 78; 46% female; community residents in good health without dementia
b. A birth cohort study / a. Cross-sectional
b. 57% (88/155) / a. Examine relationships in old age between QoL, childhood IQ, physical and cognitive function and psychological symptoms / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
Beaumont et al. 2004 [50] / a. n=193; mean age 77; 70% female; healthy older people ≥65 yrs
b. Living in Wandsworth, London / a. Baseline assessment in longitudinal study; volunteer sample
b. T1 98% (190/193) / a. Understanding of factors that contribute to QoL perceptions and effects of styles of social comparison used in QoL judgements
b. NR / a. Changed order: weighting followed by rating
b. NR
c. Semi-structured interview / a. NR
b. NR
c. “Domains were freely generated by participants”
Browne et al. 1997 [11] / a. n=40; mean age 31; 63% female; healthy individuals
b. Staff and students at a university / a. Longitudinal (T2=7-10 days after T1; T3=7-10 days after T2)
b. NR / a. Assess stability and validity of the SEIQoL-DW and compare to the SEIQoL-JA
b. NR / a. Rating of domains not performed
b NR
c. NR / a. <5 min for DW
b. NR
c. Participants found SEIQoL-DW acceptable
Chio et al. 2004 [17] / a. n=80; mean age 60; 39% women; ALS, mean duration of disease 2 yrs
b. Recruitment through ALS centre / a. Cross-sectional
b. NR / a. Evaluate determinants of QoL in patients with ALS
b. NR / a. Changed order: weighting followed by rating
b. NR
c. NR / a. NR
b. NR
c. NR
Coen et al. 1999 [46] / a. n=50; primary care givers of patients diagnosed with Alzheimer’s disease (AD), mean age 57; 72% female; patients meeting criteria for probable AD; duration of care 3-15 yrs
b. Consecutive recruitment / a. Cross-sectional
b. 92.5% (50/54) / a. Explore the relationship between key correlates of care giver stress (burden, well-being and individual QoL)
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
De la Rie 2007 [18] / a. n=292 (current eating disorder (ED) n=146/former ED n=146); mean age 29 yrs; 98% female; meeting DSM-IV criteria (based on self-report, BMI, menstrual status)
b. Majority recruited through advertisements in newspapers; smaller percentage recruited at specialized ED centers (10%) / a. Cross-sectional; volunteer sample
b. NR / a. Views of current and former ED patients on their QoL
b. NR / a. Weighting procedure performed by ranking the nominated domains in order of importance; no Index score calculated
b. NR
c. Administrated written / a. NR
b. NR
c. NR
Fegg et al. 2005 [19] / a. n=64; median age 63 yrs (range 18-81; 34% female; palliative care patients: 56% cancer inpatients in advanced stage AND 44% amotrophic lateral sclerosis (ALS)
b. Recruitment through Palliative Center and neurology department at a university hospital / a. Cross-sectional
b. 85% (64/75) / a. Evaluate the relationship between value dimensions and individual QoL in palliative care patients
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
Frick et al. 2004 [20] / a. n= 79; age range 10-70, 69.6% > 50 yrs; 43% women; malignant blood disorders undergoing peripheral blood stem cell transplantation
b. Hospitalized patients / a. Baseline assessment in psychosocial RCT
b. NR / a. Compare SEIQoL-DW and EORTC QLQ-C30
b. Instruments statistically independent / a. Standard; additional VAS on current QoL included
b. Prompt list available, but not used
c. Semi-structured interview / a. 15-25 min
b. No missing data
c. NR
Goldstein et al. 2002 [21] / a. n=31; mean age 64 ; 39% women; probable or definite ALS diagnosis, mean time since diagnosis 16 months
b. Outpatients / a. Cross-sectional
b. NR / a. Assess relationships between SEIQoL-DW and physical impairment, functional status, well-being and cognitive functioning
b. NR / a. Standard
b. NR
c. NR / a. NR
b. NR
c. NR
Gribbin et al. 2004 [22] / a. n=73; mean age 76; 44% female; patients receiving pacemaker
b. Patients recruited from pacemaker trials / a. Pacemaker RCT including four assessments
b. 46% (73/158) / a. Assess effect of pacemaker mode on QoL
b. Atrial-based pacing improves QoL / a. NR
b. NR
c. NR / a. NR
b. n=9 (12%) did not complete SEIQoL-DW
c. NR
Hickey et al. 1997 [47] / a. n=n=40 (patients who sustained a severe head injury); n=40 (their primary care givers); mean age among care givers NR, among patients 50% 24 or less; 88%/30% female (care givers/patients); severe head injury defined as post-traumatic amnesia of ≥ 24 h
b. Consecutive admissions to the Neurosurgical Centre, Dublin / a. Longitudinal (T1= close to discharge from hospital; T2=4-5 weeks after discharge; T3=12 months after discharge)
b. 87% (40/46 patient and carer pairs) / a. Examine QoL over time for careers of individuals following severe head injury
b. Levels of problems reported by patients and carers are expected to be a significant contributor to carer quality of life / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
Hickey et al. 1996 [10] / a. n=52; age and sex NR; adult HIV positive patients receiving ambulatory care AND healthy adults, matched for age and sex, drawn from the same neighbourhood
b. Patients recruited through general practices / a. Cross-sectional
b. NR / a. Evaluate clinical application of the SEIQoL-DW
b. NR / a. Standard
b. Prompt list available, NR if used
c. Semi-structured interview / a. Approximately 5-10 minutes
b. NR
c. Found to be acceptable and feasible
Krvohlavy et al. 2001 [51] / a. n=108; mean age women 38, men 43 (range 16-75); 77% female; specialized in auxiliary professions
b. NR / a. Cross-sectional
b. NR / a. Investigate interrelations between QoL, meaning-fulness and faith
b. There is a relation between QoL and meaningfulness of life / a. Standard
b. NR
c. NR (probably semi-structured) / a. NR
b. NR
c. Procedure proved to be fully understood by all persons taking part in this study
Lee et al. 2006 [23] / a. n= 123; median age 75; 52% female; idiopathic Parkinson’s; median duration of disease 6 y
b. Patients under care of a Parkinson’s disease service / a. Cross-sectional
b. 76.4% (123/161) / a. To compare the Parkinson Disease Questionnaire (PDQ-39) with the SEIQoL-DW
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. Median time 20 minutes
b. NR
c. Seven patients required help in moving disk;
administration well understood by patients
LeVasseur et al. 2005 [25] / a. n=46; mean age 64 ; 28% female; stroke
b. living at home and attending a secondary prevention clinic / a. Cross-sectional
b. 79% (46/58) / a. Assess applicability and construct validity of the SEIQoL-DW
b. SEIQoL-DW index will demonstrate convergent validity with other QoL measures / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. No
c. 9 persons (20%) experienced difficulty in completing weighting procedure; with repeated instruction all individuals completed the task on their own; significant correlation (r=0.44) between capacity to complete SEIQoL-DW and Mini Mental State Examination
Levack et al. 2004 [24] / a. n=180; age and sex NR; patients newly diagnosed with malignant cord compression, median survival 59 days
b. Recruitment from three oncology centres / a. Baseline assessment in longitudinal study
b. 56% (180/319) / a. Assess relation between QoL and physical ability (KPS, Barthel Disability Index) and emotional wellbeing (HADS)
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. 81 patients (45%) unable to complete SEIQoL-DW: nominate five cues, define function and importance (n=57 unwell, n=24 no reason)
c. NR
Lhussier et al. 2005 [26] / a. Eldery: n=168; mean age 81; COPD patients: n=187; mean age 68
b. Old people (≥75 y) recruited from a health service database COPD patients (>40 y) recruited from respiratory medicine clinics / a. Cross-sectional
b. Old people sample: 29% (168/583); COPD sample: 44% (187/424) / a. To assess the relationship between objective health status and subjective QoL
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
Lintern et al. 2001
[27] / a. n=30; mean age 52; 60% female; advanced multiple sclerosis
b. Residents of a neuro-disability hospital / a. Cross-sectional
b. 94 % (2/32) / a. Compare SEIQoL-DW, the PGI and the SF-36 using multidimensional scaling technique (MDS)
b. NR / a. Standard including five intervening descriptors to the VAS to add comprehension to the rating procedure
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
Lo Coco et al. 2005 [28] / a. n=37; mean age 61; adult patients with ALS; duration from diagnosis 16 months; AND n=37 primary caregivers of patients; mean age 55 AND n=7 healthy couples; mean age 61
b. Patients followed at an ALS clinic / a. Cross-sectional
b. NR / a. To evaluate QoL in ALS patients and caregivers
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. NR
b. NR
c. NR
McKee et al. 2002 [29] / a. n=60; mean age 87 (range 57-99); 80% female; frail older people
b. Nursing home residents / a. Cross-sectional
b. NR / a. Examine appropriateness, reliability and convergence of instruments measuring QoL and well-being in old people
b. NR / a. Standard
b. NR
c. Semi-structured interview / a. 20-30 minutes
b. 45% (n=27) unable to complete assessment due to poor physical health or disability; 28% (n=17) due to severe confusion and 17% (n=6) refused during procedure
c. Of the 10 residents who completed the SEIQoL-DW, five were rated to have poor understanding, and five good understanding of process; 2/10 showed signs of boredom during process; not recommended in its current form
Montgomery et al. 2002 [30] / a. n=51; mean age 54 ; 29% female; leukaemia and lymphoma
b. In- and out-patients attending haematology dept. / a. Cross-sectional
b. 90% (51/57) / a. Evaluate clinical usefulness of SEIQoL-DW
b. NR / a. Standard procedure
b. NR
c. Semi-structured interview / a. Approximately 10-15 minutes
b. NR
c. No patients failed to understand
Montgomery et al. 2003 [31] / a. n=51; mean age 54 ; 29% female; leukaemia and lymphoma
b. In- and out-patients attending haematology dept. / a. Cross-sectional
b. 90% (51/57) / a. Identify factors associated with severe psychological distress
b. NR / a. NR
b. NR
c. Semi-structured interview / a. 10 min
b. NR
c. NR
Moons 2004 [32] / a. n=629; (cross-sectional study); median age 23; 40% women; congenital heart disease;
n= 130 (longitudinal study); median age 24; 40% women; congenital heart disease
b. Outpatient clinic / a. Cross-sectional with longitudinal part
b. Cross-sectional study NR, 90% for the longitudinal study / a. Assess validity, reliability and responsiveness for SEIQoL-DW
b. Nine hypotheses were tested regarding internal structure, relations with other variables, reliability and responsiveness / a. NR
b. NR
c. NR / a. NR
b. n=50 (8%) considered invalid due to problems understanding the procedure, inaccuracy of answers, and interference from accompanying person
c. NR
Moons et al. 2005 [34] / a. n=579, 40% female; median age 23 y (18-66); congenital heart disease AND n=446 healthy controls, matched to patients regarding gender, age, employment status
b. Outpatient clinic for congenital heart disease at a university hospital / a. Descriptive, cross- sectional
b. Response rate 88% (629/716) / a. To identify specific issues, or domains, that most importantly affect the QoL in adults with congenital heart disease; partly assessed by comparing patients with healthy counterparts
b. NR / a. Standard procedure
b. NR
c. Semi-structured interview / a. 7 minutes (3-15)
b. n=50 (inaccurate answers or failed to understand procedure)
c. NR
Moons et al. 2005 [33] / a. n=579, 40% female; median age 23 y (18-66); congenital heart disease
b. Outpatient clinic for congenital heart disease at a university hospital / a. Cross-sectional
b. Response rate 88% / a. To explore whether the severity of congenital heart disease is associated with the quality of life and perceived health status
b. NR / a. Not explicitly reported
b. NR
c. Not explicitly reported / a. NR
b. NR
c. NR
Mountain et al. 2004 [35] / a. n=60; mean age=81; 60% female; older people >65 yrs, acutely admitted; 55% had cognitive/executive functional dysfunction
b. Assessment ward in a dept. of medicine for elderly / a. Cross-sectional
b. 85% (60/71) / a. Examine if disease-based clerking could be supplemented with QoL information
b. NR / a. Standard
b. Prompt list used in 33% of cases
c. Semi-structured interview / a. 37.7 min (15-105 min)
b. 25% (15/60) not able to fully complete SEIQoL-DW due to confusion, distress, fatigue or blindness; 7% unable to provide 5 areas despite prompting; 38% unable to draw cue levels; 56% could not manipulate the direct weighting device
c. Both senior house officers (65%) and their senior colleagues (53%) considered information useful (62% and 50% respectively); usefulness in hospitals perceived as low