Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
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Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifically in cancer and appraised the content. ⋯ Few measures of caregiver impact have been subject to psychometric evaluation in cancer caregivers. Those that have do not capture well changes in roles and responsibilities within the family and career, indicating the need for a new instrument.
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Osteogenesis imperfecta (OI) is a genetic disorder (prevalence: 1:10,000), leading to bone fragility, frequent fractures, and varying degrees of physical limitations. Despite a substantial amount of research on the genetics, pathophysiology, and treatments related to OI, there remains a paucity of knowledge concerning the lived psychosocial experience of the OI population. This mixed-methods systematic review aimed to review, appraise, and synthesize the literature on the psychosocial experience of children and adults with OI with the goal of identifying implications for research, practice, and policy-making. ⋯ These findings highlighted key aspects of the experiences of children and adults with OI and will be essential for improving the quality and direction of research, tailoring clinical interventions addressing the psychosocial needs and quality of life of individuals with OI, and raising awareness among caregivers, healthcare professionals, administrators, and policy-makers associated with the OI population.
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To translate the health questionnaire EuroQol EQ-5D-5L into British Sign Language (BSL), to test its reliability with the signing Deaf population of BSL users in the UK and to validate its psychometric properties. ⋯ This is the first time EQ-5D-5L has been translated into a signed language for use with Deaf people and is a significant step forward towards conducting studies of health status and cost-effectiveness in this population.
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Fibromyalgia (FM) is characterized by myriad symptoms and problems. Fatigue is one of the most common, distressing, and disabling symptoms in FM. The purpose of this study was to use fatigue item banks that were developed as part of the Patient-Reported Outcomes Measurement Information System (PROMIS) to devise a self-report measure of fatigue for use in individuals with FM. ⋯ The newly developed PROMIS FatigueFM Profile, a 16-item measure consisting of four 4-item short forms of self-reported fatigue severity, shows early evidence of good psychometric characteristics, provides the ability to use short forms that assess distinct aspects of fatigue experience and fatigue impact, and demonstrates equivalent or higher levels of test information compared to standard PROMIS fatigue short forms with similar number of items. The PROMIS FatigueFM Profile indicated fatigue experience and impact levels approximately 1.5 standard deviations above the normative sample mean across all short forms. Future work to evaluate the validity and reliability of this new measure in individuals with FM is needed.
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This study aims to explore the changes in pain intensity and quality of life (QoL) experienced by patients with painful diabetic neuropathy (PDN) treated with spinal cord stimulation (SCS) and conventional medical practice (CMP). ⋯ SCS resulted in significant improvement in pain intensity and QoL in patients with PDN, offering further support for SCS as an effective treatment for patients suffering from PDN. From a methodological point of view, different results would have been obtained if QALY calculations were not adjusted for baseline EQ-5D scores, highlighting the need to account for imbalances in baseline QoL.