Abstract
BackgroundThe purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments.MethodsThe study employed a cross-sectional design including cancer patients who were going to receive chemotherapy treatment and their caregivers. Quality of life was assessed using condition-specific questionnaires (EORTC QLQ-C30 and CarGOQoL), generic health-related questionnaire (SF-36), and open individualized measure (SEIQoL).ResultsThe final sample included 205 patient-caregiver dyads. From the SEIQoL, Family, Health, and Leisures were the most freely expressed QoL domains by patients and caregivers, but reported with different weights. Love life and financial issues were less spontaneously mentioned. The SEIQoL index was moderately correlated to the condition-specific QoL questionnaires (R lower than |0.40|) and to SF-36 (correlation coefficients: R ranging from 0.17 to 0.31).ConclusionIndividualized QoL measures allow individuals to spontaneously express important, non-predefined domains. This study highlights the need to explore QoL using a combination of individualized questionnaires and standardized questionnaires, capturing complementary facets that patients consider important in their life.
Highlights
The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, Schedule for the evaluation of individual QoL (SEIQoL)), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments
The SEIQoL-DW assesses the individuals’ perception of his or her present QoL and allows the individual to choose the domains to be evaluated followed by a weighting procedure resulting in qualitative and quantitative outcomes
The purposes of the present study, performed on a large sample of cancer patient-caregiver dyads, were to: i) simultaneously investigate, using the SEIQoL-DW, the QoL domains freely expressed by cancer patients and their caregivers, and ii) explore overlapping between the SEIQoL and traditional instruments
Summary
The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments. Studies examining health-related quality of life (QoL) have typically used standardized measures, called disease- or condition-specific, or generic measures [1]. These traditional standardized instruments usually include a predefined set of items exploring pre-defined domains and have been criticized for potentially missing important domains for assessing an individual’s QoL or including less important domains. To overcome this limitation, individualized measures or patient-generated QoL procedures have been developed, enabling respondents to spontaneously identify which aspects of their lives are relevant to their QoL. The SEIQoL-DW has proven to be a reliable measure in various populations [3]
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