| 11. |
- 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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| 12. |
- Paradowski, Przemyslaw T, et al.
(författare)
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Similar group mean scores, but large individual variations, in patient-relevant outcomes over 2 years in meniscectomized subjects with and without radiographic knee osteoarthritis.
- 2004
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 2:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Epidemiological studies have, so far, identified factors associated with increased risk for incident or progressive OA, such as age, sex, heredity, obesity, and joint injury. There is, however, a paucity of long-term data that provide information on the nature of disease progression on either group or individual levels. Such information is needed for identification of study cohorts and planning of clinical trials. The aim of the study was, thus, to assess the variation in pain and function on group and individual level over 2 years in previously meniscectomized individuals with and without radiographic knee osteoarthritis (OA). Methods 143 individuals (16% women, mean age at first assessment 50 years [range 27–83]) were assessed twice; approximately 14 and 16 years after isolated meniscectomy, with a median interval of 2.3 years (range 2.3–3.0). Radiographic OA (as assessed at the time of second evaluation) was present in the operated knee in 40%, and an additional 19% had a single osteophyte grade 1 in one or both of the tibiofemoral compartments. Subjects completed the self-administered and disease-specific Knee injury and Osteoarthritis Outcome Score (KOOS). Results There were no significant changes in the group mean KOOS subscale scores over the 2-year period. However, a great variability over time was seen within individual subjects. Out of 143 subjects, 16% improved and 12% deteriorated in the subscale Pain, and 13% improved and 14% deteriorated in the subscale ADL ≥ 10 points (the suggested threshold for minimal perceptible clinical change). Similar results were seen for remaining subscales. Conclusion Group mean scores for this study cohort enriched in incipient and early-stage knee OA were similar over 2 years, but pain, function and quality of life changed considerably in individuals. These results may be valid also for other at risk groups with knee OA, and motivate further careful examination of the natural history of OA, as well as properties of the OA outcome instruments used. Longitudinal outcome data in OA studies need to be analyzed both on an individual and a group level.
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| 13. |
- Roos, Ewa, et al.
(författare)
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Knee injury and Osteoarthritis Outcome Score (KOOS) - validation and comparison to the WOMAC in total knee replacement.
- 2003
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 1:1, s. 17-17
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Knee injury and Osteoarthritis Outcome Score (KOOS) is an extension of the Western Ontario and McMaster Universities Osteoarthrtis Index (WOMAC), the most commonly used outcome instrument for assessment of patient-relevant treatment effects in osteoarthritis. KOOS was developed for younger and/or more active patients with knee injury and knee osteoarthritis and has in previous studies on these groups been the more responsive instrument compared to the WOMAC. Some patients eligible for total knee replacement have expectations of more demanding physical functions than required for daily living. This encouraged us to study the use of the Knee injury and Osteoarthritis Outcome Score (KOOS) to assess the outcome of total knee replacement. METHODS: We studied the test-retest reliability, validity and responsiveness of the Swedish version LK 1.0 of the KOOS when used to prospectively evaluate the outcome of 105 patients (mean age 71.3, 66 women) after total knee replacement. The follow-up rates at 6 and 12 months were 92% and 86%, respectively. RESULTS: The intraclass correlation coefficients were over 0.75 for all subscales indicating sufficient test-retest reliability. Bland-Altman plots confirmed this finding. Over 90% of the patients regarded improvement in the subscales Pain, Symptoms, Activities of Daily Living, and knee-related Quality of Life to be extremely or very important when deciding to have their knee operated on indicating good content validity. The correlations found in comparison to the SF-36 indicated the KOOS measured expected constructs. The most responsive subscale was knee-related Quality of Life. The effect sizes of the five KOOS subscales at 12 months ranged from 1.08 to 3.54 and for the WOMAC from 1.65 to 2.56. CONCLUSION: The Knee injury and Osteoarthritis Outcome Score (KOOS) is a valid, reliable, and responsive outcome measure in total joint replacement. In comparison to the WOMAC, the KOOS improved validity and may be at least as responsive as the WOMAC.
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| 14. |
- Roos, Ewa, et al.
(författare)
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The Knee injury and Osteoarthritis Outcome Score (KOOS): from joint injury to osteoarthritis.
- 2003
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- The Knee injury and Osteoarthritis Outcome Score (KOOS) was developed as an extension of the WOMAC Osteoarthritis Index with the purpose of evaluating short-term and long-term symptoms and function in subjects with knee injury and osteoarthritis. The KOOS holds five separately scored subscales: Pain, other Symptoms, Function in daily living (ADL), Function in Sport and Recreation (Sport/Rec), and knee-related Quality of Life (QOL). The KOOS has been validated for several orthopaedic interventions such as anterior cruciate ligament reconstruction, meniscectomy and total knee replacement. In addition the instrument has been used to evaluate physical therapy, nutritional supplementation and glucosamine supplementation. The effect size is generally largest for the subscale QOL followed by the subscale Pain. The KOOS is a valid, reliable and responsive self-administered instrument that can be used for short-term and long-term follow-up of several types of knee injury including osteoarthritis. The measure is relatively new and further use of the instrument will add knowledge and suggest areas that need to be further explored and improved.
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| 15. |
- Shaw, Michael, et al.
(författare)
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The Reflux Disease Questionnaire: a measure for assessment of treatment response in clinical trials
- 2008
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 6:31
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Tidskriftsartikel (refereegranskat)abstract
- Background: Critical needs for treatment trials in gastroesophageal reflux disease (GERD) include assessing response to treatment, evaluating symptom severity, and translation of symptom questionnaires into multiple languages. We evaluated the previously validated Reflux Disease Questionnaire (RDQ) for internal consistency, reliability, responsiveness to change during treatment and the concordance between RDQ and specialty physician assessment of symptom severity, after translation into Swedish and Norwegian. Methods: Performance of the RDQ after translation into Swedish and Norwegian was evaluated in 439 patients with presumed GERD in a randomized, double-blind trial of active treatment with a proton pump inhibitor. Results: The responsiveness was excellent across three RDQ indicators. Mean change scores in patients on active treatment were large, also reflected in effect sizes that ranged from a low of 1.05 (dyspepsia) to a high of 2.05 (heartburn) and standardized response means 0.99 (dyspepsia) and 1.52 (heartburn). A good positive correlation between physician severity ratings and RDQ scale scores was seen. The internal consistency reliability using alpha coefficients of the scales, regardless of language, ranged from 0.67 to 0.89. Conclusion: The results provide strong evidence that the RDQ is amenable to translation and represents a viable instrument for assessing response to treatment, and symptom severity.
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| 16. |
- 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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| 17. |
- Wann-Hansson, Christine, et al.
(författare)
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A comparison of the Nottingham Health Profile and Short Form 36 Health Survey in patients with chronic lower limb ischaemia in a longitudinal perspective
- 2004
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Ingår i: Health and quality of life outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Different generic quality of life instruments such as the Nottingham Health Profile (NHP) and the Short Form 36 Health Survey (SF-36) have revealed conflicting results in patients with chronic lower limb ischaemia in psychometric attributes in short-term evaluations. The aim of this study was to compare the NHP and the SF-36 regarding internal consistency reliability, validity, responsiveness and suitability as outcome measures in patients with lower limb ischaemia in a longitudinal perspective. METHODS: 48 patients with intermittent claudication and 42 with critical ischaemia were included. Assessment was made before and one year after revascularization using comparable domains of the NHP and the SF-36 questionnaires. RESULTS: The SF-36 was less skewed and more homogeneous than the NHP. There was an average convergent validity in three of the five comparable domains one year postoperatively. The SF-36 showed a higher internal consistency except for social functioning one-year postoperatively and was more responsive in detecting changes over time in patients with intermittent claudication. The NHP was more sensitive in discriminating among levels of ischaemia regarding pain and more able to detect changes in the critical ischaemia group. CONCLUSION: Both SF-36 and NHP have acceptable degrees of reliability for group-level comparisons, convergent and construct validity one year postoperatively. Nevertheless, the SF-36 has superior psychometric properties and was more suitable in patients with intermittent claudication. The NHP however, discriminated better among severity of ischaemia and was more responsive in patients with critical ischaemia.
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| 18. |
- Allik, Hiie, et al.
(författare)
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Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism
- 2006
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 4, s. 1-
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Tidskriftsartikel (refereegranskat)abstract
- Background: The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome ( AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. Methods: The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ). Results: The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child. Conclusion: Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.
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| 19. |
- 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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| 20. |
- Arvidsson, Susann, 1965-, et al.
(författare)
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Health predicting factors in a general population over an eight-year period in subjects with and without chronic musculoskeletal pain
- 2008
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Ingår i: Health and Quality of Life Outcomes. - London : BioMed Central. - 1477-7525. ; 6
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Tidskriftsartikel (refereegranskat)abstract
- Background: Many factors are proposed to be associated with health-related quality of life. Knowledge of health factors associated to development of a good health-related quality of life could be of use in clinical practice and public health work. The aim of this study was to investigate the associations between suggested health factors and health-related quality of life at baseline and in an eight-year follow up in subjects with and without chronic musculoskeletal pain in a cohort from a general population.Methods: The study was designed as a longitudinal study in a Swedish general population (N = 1 849) with a postal questionnaire at baseline 1995 and at follow up 2003. Subjects were divided into two groups, according to their response about chronic musculoskeletal pain at baseline. Health-related quality of life was assessed by the SF-36 together with suggested health factors. The associations between SF-36 subscales and suggested health factors were estimated by OR and 95% CI calculated by multivariable logistic regressions, with adjustment for all health factors, age, sex and baseline SF-36 values.Results: Although subjects without chronic musculoskeletal pain reported better health-related quality of life than subjects with chronic pain, similar health factors were found to be associated to higher scores in SF-36 at baseline and predicted a better outcome in the eight-year follow up. The most consistent finding was a better health outcome in the eight-year follow up for subjects that were feeling rested after sleep. Other factors that in some aspects predicted a better outcome were belonging to higher socioeconomic group, being a native Swede, having emotional support, having good sleep structure, never being or being a former smoker, and regularly drinking alcohol.Conclusion: The most important health factor in subjects with and without chronic musculoskeletal pain was feeling rested after sleep, but also emotional support, sleep structure, smoking and alcoholic habits appears to be important components. These health factors could be important to address in clinical work with painful musculoskeletal disorders. Since several health factors are common in both subjects with and without pain there could be a common strategy to be formed in public health programmes.
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