Journal of patient-reported outcomes
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J Patient Rep Outcomes · Aug 2021
A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular dystrophy, in ambulatory individuals aged two years and older. This study explored the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy, as well as the impact of treatment with ataluren on the caregiver experience, using retrospective recall. ⋯ Caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy has a substantial multifaceted impact on caregivers. Treatments which have the potential to improve symptoms or delay progression, may also have a positive impact on the quality of life of caregivers.
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J Patient Rep Outcomes · Jan 2021
Establishing content-validity of a disease-specific health-related quality of life instrument for patients with chronic hypersensitivity pneumonitis.
Chronic Hypersensitivity Pneumonitis (CHP) is caused by an immune mediated response in the lung tissue after exposure to an inhaled environmental antigenic stimulant. We previously documented the ways in which CHP impacts patients' lives and have now developed a disease-specific instrument, the CHP-HRQOL instrument, to measure health-related quality of life (HRQOL). The objective of this study was to assess content validity for the CHP-HRQOL. ⋯ The CHP-HRQOL instrument demonstrated high content validity and is ready for psychometric testing in further validation studies.
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J Patient Rep Outcomes · Dec 2020
Establishing a common metric for patient-reported outcomes in cancer patients: linking patient reported outcomes measurement information system (PROMIS), numerical rating scale, and patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE).
Researchers and clinicians studying symptoms experienced by people with cancer must choose from various scales. It would be useful to know how the scores on one measure translate to another. ⋯ We produced robust linking between single item symptom measures and PROMIS short forms.
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J Patient Rep Outcomes · Jul 2020
Intensive care unit (ICU) diaries and the experiences of patients' families: a grounded theory approach in a lower middle-income country (LMIC).
An intensive care unit (ICU) diary is a relatively new concept in low middle-income countries (LMICs). Illiteracy and socio-cultural inhibitions may affect the use and utility of this intervention, which has proven beneficial to patients and their families in high income countries (HICs). We aimed to explore how families of ICU patients experienced ICU diaries in our set up by using the Grounded Theory (GT) approach. A relatively new research tool, this enables exploration of a phenomenon to build theories in areas hitherto uncharted. ⋯ Our findings indicate a good acceptance of ICU diaries by family members in our ICU. With less literate, admitted 'shy 'members, in a society where 'diary writing' is not culturally rampant, the appreciation for the novel concept was universal. We see a place for these interventions not only at the patient/ family level but also as a means to 'correct' the image of health care workers in our society by humanizing ourselves to the end-user- the patient and his family.
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J Patient Rep Outcomes · Jul 2020
A real-world analysis of patient-reported outcomes in patients with migraine by preventive treatment eligibility status in the US and Europe.
Migraine has a severe impact on health-related quality of life (HRQoL) affecting physical, emotional, and social aspects of daily living of an individual. Preventive treatment has been demonstrated to improve HRQoL by reducing the frequency of migraine headache days. ⋯ Patients who were preventive eligible (≥4 migraine headache days/month) demonstrated greater burden of disease across multiple PRO measures; trends were similar across the US and the five EU countries.