Phl11 Development of the Haemophilia Agegroup Specific Quality of Life Questionnaire

Trudeau, Elyse; Dias, Cristiane Maria Carvalho Costa; Lambert, Thierry; Chambost, Hérvè; Peynet, J; Fressinaud, Édith; Guérois, C.

doi:10.1016/s1098-3015(10)61895-5

Cited by 3 publications

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“…Also, the Hemolatin‐QoL Questionnaire [66] from Latin America is a newer instrument available in Spanish as well as Portuguese for Brazil with current psychometric testing underway. A newer French instrument, the hemophilia age‐group specific quality of life questionnaire assessing 11 domains with 89 items, is currently under validation [67].…”

Section: Results: Quality Of Lifementioning

confidence: 99%

Challenges of Patient-Reported Outcome Assessment in Hemophilia Care—a State of the Art Review

et al. 2009

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Section: Results: Quality Of Lifementioning

confidence: 99%

Challenges of Patient-Reported Outcome Assessment in Hemophilia Care—a State of the Art Review

et al. 2009

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“…In the last five years, disease‐specific instruments for children and adults with haemophilia have been developed, as shown in Tables 3 and 4 [37–46], which have been recently reviewed [47]. All of the questionnaires for children are self‐completed, but the American Quality of Life for Young Patients questionnaire, which is completed by proxies and, designed for smaller children, aged 2–6 years.…”

Section: Discussionmentioning

confidence: 99%

Quality of life in haemophilia

Gringeri

Mackensen²

2008

Haemophilia

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Summary. There is a growing interest in patientreported outcomes as measures for evaluating the benefits of new and existing treatments. Healthrelated quality of life (HRQoL) is one of these patient-reported outcomes and represents the individual experience and perception of illness/health together with the psychosocial response to diseaserelated and treatment-related symptoms. Generic and disease-specific HRQoL questionnaires enable us to assess and quantify the multi-dimensional perception of well-being, namely the physical components and the psychological (emotional, mental, social and behavioural) components of patientÕs well-being and functioning. These instruments should be standardized and validated and they should prove to be reliable, valid, specific and sensitive in a similar manner to instruments created for objective parameters. HRQoL assessment can help us to evaluate the benefits of new treatments from the perspective of patientÕs values and expectations. It can also help to evaluate the quality of care provided, in order to be able to improve it at a local and national level. Moreover, HRQoL assessment can be routinely assessed to monitor improvement and progress or deterioration and decline from the global point of view of each single patient, integrating the otherwise limited angle of objective signs and instrumental or lab parameters.

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“…While for children, haemophilia‐specific questionnaires have been already validated (such as Haemo‐QoL [21] and CHO‐KLAT [22]), disease‐specific instruments for adults have been developed only recently (Medtap questionnaire, Haem‐A‐QoL and Hemofilia‐QoL) and some of them are not validated yet (Hemolatin‐QoL, haemophilia age‐group‐specific QoL questionnaire). Some of these questionnaires have been developed internationally such as the Haemo‐QoL in six European countries (Germany, Italy, Spain, UK, France, the Netherlands) [23], the Medtap questionnaire in the USA, Spain and Germany [24] and the Hemolatin‐QoL [25] in Latin America, whereas others have been developed only on a national level such as CHO‐KLAT in Canada [26], Haem‐A‐QoL in Italy [27], the Spanish Hemofilia‐QoL [28] and the French Haemophilia age‐group specific quality of life questionnaire [28].…”

Section: Outcome Measuresmentioning

confidence: 99%

Quality of life assessment in clinical practice in haemophilia treatment

Gringeri

Mantovani²,

Mackensen

2006

Haemophilia

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The modern management of haemophilia has greatly influenced not only survival of patients, their clinical symptoms and orthopaedic outcome but also their perceived quality of life (QoL). QoL measures recently became an essential part of clinical trials being one of the most important patient-rated outcomes (PROs). Moreover, QoL assessment is essential in pharmacoeconomics. In clinical trials, not only clinical outcomes but also the so-called PROs and health-economic outcomes are included. Different types of economic evaluations may be conducted in order to describe the economic burden of a disease condition, to determine the cost of care and to assess and evaluate alternative treatments in terms of both costs and effects as well as benefits and outcomes with the aim of optimizing the use of resources. For these evaluations, the following analyses are performed: descriptive cost of illness study, incremental cost-effectiveness analysis, incremental cost-utility analysis and incremental cost-benefit analysis. By contrast, PROs are derived from direct patient reports and they allow to evaluate the impact of a disease and its treatment on patients' well-being and functioning. PROs include health-related quality of life, patient preferences/utilities, treatment satisfaction and other PROs such as functional assessment, etc. Choosing a QoL measure, study- and instrument-related aspects have to be taken into account. Finally, QoL assessment will become a part of the regular clinical assessment of persons with haemophilia, in order to provide trustworthy data of perceived well-being to be compared over time and in order to assess treatment efficacy and quality of care.

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Phl11 Development of the Haemophilia Agegroup Specific Quality of Life Questionnaire

Cited by 3 publications

References 0 publications

Challenges of Patient-Reported Outcome Assessment in Hemophilia Care—a State of the Art Review

Challenges of Patient-Reported Outcome Assessment in Hemophilia Care—a State of the Art Review

Quality of life in haemophilia

Quality of life assessment in clinical practice in haemophilia treatment

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