Health Qual Life Out
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Health Qual Life Out · Jan 2014
ReviewInterviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients' experience.
Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients' experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. ⋯ Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process.
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Health Qual Life Out · Jan 2014
Multicenter Study Comparative StudyWellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures.
Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. ⋯ The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.
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Health Qual Life Out · Jan 2014
Impact of Alzheimer's Disease on Caregiver Questionnaire: internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden.
There is a lack of validated instruments to measure the level of burden of Alzheimer's disease (AD) on caregivers. The Impact of Alzheimer's Disease on Caregiver Questionnaire (IADCQ) is a 12-item instrument with a seven-day recall period that measures AD caregiver's burden across emotional, physical, social, financial, sleep, and time aspects. Primary objectives of this study were to evaluate psychometric properties of IADCQ administered on the Web and to determine most appropriate scoring algorithm. ⋯ The study findings suggest the IADCQ has appropriate psychometric characteristics as a unidimensional, Web-based measure of AD caregiver burden and is supported by strong model fit statistics from CFA, high degree of item-level reliability, good internal consistency, moderate test-retest reliability, and moderate convergent validity. Additional validation of the IADCQ is warranted to ensure invariance between the paper-based and Web-based administration and to determine an appropriate responder definition.
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Health Qual Life Out · Jan 2014
Using item response theory to enrich and expand the PROMIS® pediatric self report banks.
The primary objective was to enhance the content coverage of some of the pediatric self-report item banks for ages 8-17 years from the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS®), and extend the range of precise measurement to higher levels of physical functioning. ⋯ The present study expanded PROMIS pediatric item banks to add new content and to increase the range of measurement. Using item response theory, the banks were revised and expanded without changing the underlying scale of measurement. For Anger, Anxiety, and Depressive Symptoms, we successfully added new content that may render those banks more robust and flexible.
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Health Qual Life Out · Jan 2014
Reliability and validity of the Japanese version of the self-stigma scale in patients with type 2 diabetes.
Self-stigma has been highlighted and researched in relation to patients with chronic illnesses, as it may have a negative impact on their treatment adherence. However, self-stigma has not yet been investigated in patients with type 2 diabetes. In order to evaluate the extent to which patients with type 2 diabetes experience self-stigma, which may result in their poor self-care management, there is a need for a specific tool to measure self-stigma in patients with type 2 diabetes. This study assessed the psychometric properties of a Japanese version of the Self-Stigma Scale (SSS-J) in patients with type 2 diabetes. ⋯ The SSS-J is reliable and valid for assessment of the extent of self-stigma in Japanese patients with type 2 diabetes.