| 1. |
- af Sandeberg, Margareta, et al.
(författare)
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Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer
- 2010
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. Methods: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. Results: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. Conclusions: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.
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| 2. |
- Ding, Yan, et al.
(författare)
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Psychometric properties of the Chinese version of the Functional Assessment of Cancer Therapy-Cervix (FACT-Cx) measuring health-related quality of life
- 2012
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 10:124
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Functional Assessment of Cancer Therapy (FACT) is one of the most commonly used self-report instruments for evaluation of health-related quality of life in oncology patients. However, cultural considerations necessitate testing of the subscales in different populations. We sought to qualitatively and quantitatively investigate the applicability and psychometric properties of the Chinese version of the FACT-Cervix (FACT-Cx) in Chinese women with cervical cancer. Methods: Ten personal interviews were conducted in order to explore patients' opinions about the scale and its items in depth. In addition the questionnaire was administered to 400 women with cervical cancer to test its psychometric properties. Reliability was assessed using Cronbach's alpha coefficient and item-subscale correlation while validity was evaluated using factor analysis and known-group validity. Results: Some items related to sex and the ability to give birth were questioned in the personal interviews, mostly regarding their significance and acceptance in the Chinese cultural context. The Cronbach's alphas of FACT-Cx and the subscales were greater than 0.7, except for the cervical-cancer-specific subscale which was 0.57. Factor analysis demonstrated that the FACT-G construct generally paralleled the original. There were significant differences in the FACT-Cx and some subscales between those receiving and not receiving treatment and among the patients with different performance status. Conclusions: In general, psychometric properties of the Chinese version supported its use with cervical cancer patients in Mainland China. Further work is needed to improve the psychometric adequacy of the cervical-cancer-specific subscale and adjust it to cultural considerations.
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| 3. |
- Knutsson, Ida, et al.
(författare)
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Interpretation of response categories in patient-reported rating scales: a controlled study among people with Parkinson's disease
- 2010
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: Unambiguous interpretation of ordered rating scale response categories requires distinct meanings of category labels. Also, summation of item responses into total scores assumes equal intervals between categories. While studies have identified problems with rating scale response category functioning there is a paucity of empirical studies regarding how respondents interpret response categories. We investigated the interpretation of commonly used rating scale response categories and attempted to identify distinct and roughly equally spaced response categories for patient-reported rating scales in Parkinson's disease (PD) and age-matched control subjects. Methods: Twenty-one rating scale response categories representing frequency, intensity and level of agreement were presented in random order to 51 people with PD (36 men; mean age, 66 years) and 36 age-matched controls (14 men; mean age, 66). Respondents indicated their interpretation of each category on 100-mm visual analog scales (VAS) anchored by Never - Always, Not at all - Extremely, and Totally disagree - Completely agree. VAS values were compared between groups, and response categories with mean values and non-overlapping 95% CIs corresponding to equally spaced locations on the VAS line were sought to identify the best options for three-, four-, five-, and six-category scales. Results: VAS values did not differ between the PD and control samples (P = 0.286) or according to educational level (P = 0.220), age (P = 0.220), self-reported physical functioning (P = 0.501) and mental health (P = 0.238), or (for the PD sample) PD duration (P = 0.213) or presence of dyskinesias (P = 0.212). Attempts to identify roughly equally spaced response categories for three-, four-, five-, and six-category scales were unsuccessful, as the 95% CIs of one or several of the identified response categories failed to include the criterion values for equal distances. Conclusions: This study offers an evidence base for selecting more interpretable patient-reported rating scale response categories. However, problems associated with raw rating scale data, primarily related to their ordinal structure also became apparent. This argues for the application of methodologies such as Rasch measurement. Rating scale response categories need to be treated with rigour in the construction and analysis of rating scales.
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| 4. |
- Nordanstig, Joakim, et al.
(författare)
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Psychometric properties of the disease-specific health-related quality of life instrument VascuQoL in a Swedish setting
- 2012
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Traditional outcome measures in peripheral arterial disease (PAD) provide insufficient information regarding patient benefit. It has therefore been suggested to add patient-reported outcome measures. The main aim of this study was to validate the Swedish Vascular Quality of Life questionnaire (VascuQoL) version, a patient-reported PAD-specific health-related quality of life (HRQoL) instrument. Methods: Two-hundred PAD patients were consecutively recruited from two university hospitals. Out of the 200 subjects, 129 had intermittent claudication and 71 had critical limb ischemia. Mean age was 70 +/- 9 y and 57% of the participants were male. All patients completed SF-36 and VascuQoL at the vascular outpatient clinic, when evaluated for invasive treatment. Risk factors and physiological parameters were registered. Construct validity was tested by correlation analysis versus SF-36 and was also assessed with multitrait/multi-item scaling analysis (MTMI). Sensitivity analysis regarding disease severity identification was performed. Reliability was assessed with Cronbach's alpha and responsiveness by standardized response mean (SRM) calculations. Results: Significant correlations were demonstrated between relevant subscales of VascuQoL and SF-36. MTMI showed acceptable construct validity, but some scaling-errors. VascuQoL significantly (p < 0.001) discriminated claudicants from critical limb ischemia patients. Cronbach's alpha was 0.94 and SRM 1.02 (sum score). Conclusions: The Swedish version of VascuQoL is valid and quantifies central aspects of HRQoL in PAD patients. Sensitivity analysis showed high ability to differentiate between disease severity and SRM illustrated excellent responsiveness. The relative abundance of items however makes use in the everyday clinical setting somewhat difficult.
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| 5. |
- Nordyke, Katrina, 1975-, et al.
(författare)
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Internalizing the threat of risk : a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis
- 2014
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central. - 1477-7525. ; 12
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- BACKGROUND: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved.METHODS: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis.RESULTS: The overall theme - "Internalizing the threat of risk" - illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. "continuing to fear it is "all in vain".CONCLUSIONS: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.
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| 6. |
- Sjölander, Catarina, 1963-, et al.
(författare)
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Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study
- 2012
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified. The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis. Methods: Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections. Results: No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL. Conclusions: It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.
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| 7. |
- Alonso, Jordi, et al.
(författare)
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The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative.
- 2013
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Ingår i: Health and quality of life outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that support fixed-length forms as well as computerized adaptive testing (CAT), often resulting in improved measurement precision and responsiveness. Here we describe and discuss the case for developing an international core set of PROs building from the US PROMIS® network.PROMIS is a U.S.-based cooperative group of research sites and centers of excellence convened to develop and standardize PRO measures across studies and settings. If extended to a global collaboration, PROMIS has the potential to transform PRO measurement by creating a shared, unifying terminology and metric for reporting of common symptoms and functional life domains. Extending a common set of standardized PRO measures to the international community offers great potential for improving patient-centered research, clinical trials reporting, population monitoring, and health care worldwide. Benefits of such standardization include the possibility of: international syntheses (such as meta-analyses) of research findings; international population monitoring and policy development; health services administrators and planners access to relevant information on the populations they serve; better assessment and monitoring of patients by providers; and improved shared decision making.The goal of the current PROMIS International initiative is to ensure that item banks are translated and culturally adapted for use in adults and children in as many countries as possible. The process includes 3 key steps: translation/cultural adaptation, calibration, and validation. A universal translation, an approach focusing on commonalities, rather than differences across versions developed in regions or countries speaking the same language, is proposed to ensure conceptual equivalence for all items. International item calibration using nationally representative samples of adults and children within countries is essential to demonstrate that all items possess expected strong measurement properties. Finally, it is important to demonstrate that the PROMIS measures are valid, reliable and responsive to change when used in an international context.IRT item banking will allow for tailoring within countries and facilitate growth and evolution of PROs through contributions from the international measurement community. A number of opportunities and challenges of international development of PROs item banks are discussed.
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| 8. |
- Bergström, Aileen L., et al.
(författare)
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Combined life satisfaction of persons with stroke and their caregivers : associations with caregiver burden and the impact of stroke
- 2011
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 9, s. 1-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods: In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS). Results: The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions: Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.
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| 9. |
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| 10. |
- Bullinger, Monika, et al.
(författare)
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Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument.
- 2013
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Ingår i: Health and quality of life outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: When evaluating the outcomes of treatment in paediatric endocrinology, the health-related quality of life (HrQoL) of the child is to be taken into consideration. Since few self--reported HrQoL instruments exist for children with diagnosed short stature (dSS), the objective of this study was to develop and psychometrically test a targeted HrQoL instrument for use in multinational clinical research. METHODS: The target population were short stature (height < -2 SDS) children and adolescents (age 8--12 and 13--18 years) with a diagnosis of growth hormone deficiency (GHD) or idiopathic short stature (ISS), differing in growth hormone treatment status. Focus group discussions for concept and item generation, piloting of the questionnaire with cognitive debriefing, and instrument field testing with a retest were conducted simultaneously in five countries. After qualitative and preliminary quantitative analyses, psychometric testing of field test data in terms of reliability and validity including, confirmatory factor analyses (CFA) was performed. RESULTS: Following item generation from focus group discussions, 124 items were included in a pilot test with a cognitive debriefing exercise providing preliminary feedback on item and domain operating characteristics. A field test with 268 participants showed high internal consistency reliabilities (alpha 0.82 -- 0.95), good correlations with generic measures (up to r = .58), significant known group differences (e.g. in height: F = 32, df 244, p < 0.001) and an acceptable CFA model fit suggesting construct validity of the three-domain core structure with 22 items, supplemented by three mediator domains with 29 items. CONCLUSIONS: The QoLISSY questionnaire is a promising step forward in assessing the impact of dSS on HrQoL. It is based on items generated from the subjective experience of short stature children referred for endocrine investigation, is validated for use in five languages and it is easy to administer in clinical and research settings.
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