Alyson Grove

Bio: Alyson Grove is an academic researcher. The author has contributed to research in topics: Patient experience. The author has an hindex of 2, co-authored 2 publications receiving 2703 citations.

Understanding the Patient Perception of Statin Experience: A Qualitative Study

Abstract: Statin intolerance (SI) occurs in patients with dyslipidemia treated with statins. Statin-associated symptoms have been reported, but the overall patient experience is poorly understood. No instruments are available to collect this patient experience. Our aim is to develop a patient survey to define SI from the patient’s perspective, inform clinical practice, and identify potential patient characteristics and barriers associated with discontinuing treatment when statin-related difficulties are encountered. We conducted qualitative concept elicitation interviews with 65 patients across 12 European study sites. A semi-structured qualitative interview guide was developed based on literature review and clinician interviews. Concept elicitation interviews with patients were used to describe the patient experience and develop the conceptual framework for the survey. Symptoms experienced by patients included muscle and non-muscle-related pain and discomfort; other muscle-related symptoms; gastrointestinal, cardiovascular, cold-like, fatigue-related, and sensory and systems symptoms; mood changes; and cognitive and memory problems. Impacts included limitations on general physical functioning; physical activities; social functioning; emotional impacts; sleep disturbances; decreased productivity; and increased healthcare use. Conceptual framework elements to support survey goals include demographic and clinical characteristics, health information and beliefs, statin side-effect history, symptom severity, and impact severity. Symptoms and impacts described by patients showed a wider range of symptoms and impacts than usually discussed clinically. The patient survey is designed to capture information from patients who experience difficulties with statin therapy and may be useful in identifying patients who are at higher risk for giving up or discontinuing their treatment. Amgen Inc.

Translation, adaptation and validation of instruments or scales for use in cross‐cultural health care research: a clear and user‐friendly guideline

Abstract: Rationale, aims and objectives The diversity of the population worldwide suggests a great need for cross-culturally validated research instruments or scales. Researchers and clinicians must have access to reliable and valid measures of concepts of interest in their own cultures and languages to conduct cross-cultural research and/or provide quality patient care. Although there are well-established methodological approaches for translating, adapting and validating instruments or scales for use in cross-cultural health care research, a great variation in the use of these approaches continues to prevail in the health care literature. Therefore, the objectives of this scholarly paper were to review published recommendations of cross-cultural validation of instruments and scales, and to propose and present a clear and user-friendly guideline for the translation, adaptation and validation of instruments or scales for cross-cultural health care research. Methods A review of highly recommended methodological approaches to translation, adaptation and cross-cultural validation of research instruments or scales was performed. Recommendations were summarized and incorporated into a seven-step guideline. Each one of the steps was described and key points were highlighted. Example of a project using the proposed steps of the guideline was fully described. Conclusions Translation, adaptation and validation of instruments or scales for crosscultural research is very time-consuming and requires careful planning and the adoption of rigorous methodological approaches to derive a reliable and valid measure of the concept of interest in the target population.

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

Abstract: Purpose An essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require capturing patient-reported outcome (PRO) data appropriately to inform research, healthcare delivery, and policy. This initiative’s goal was to identify minimum standards for the design and selection of a PRO measure for use in PCOR and CER.

The prevalence of lower urinary tract symptoms (LUTS) in the USA, the UK and Sweden: results from the Epidemiology of LUTS (EpiLUTS) study.

Abstract: OBJECTIVE To estimate and compare the prevalence and associated bother of lower urinary tract symptoms (LUTS) in the general populations of the USA, UK and Sweden using current International Continence Society (ICS) definitions, as no previous population-based studies evaluating the prevalence of LUTS in the USA, using the 2002 ICS definitions, have been conducted. SUBJECTS AND METHODS This cross-sectional, population-representative survey was conducted via the Internet in the USA, the UK and Sweden. Members of Internet-based panels were randomly selected to receive an e-mailed invitation to participate. If interested, respondents selected a link to an informed consent page, followed by the survey. Participants were asked to rate how often they experienced individual LUTS during the previous 4 weeks, on a five-point Likert scale, and, if experienced, how much the symptom bothered them. Descriptive statistics were used to summarize and present the data. RESULTS Responses rates for the USA, the UK and Sweden were 59.6%, 60.6% and 52.3%, respectively, with a final sample of 30 000 (USA 20 000; UK 7500; Sweden 2500). The mean age (range) of the participants was 56.6 (40–99) years; the mean percentages for race were 82.9% white, 6.7% black, 6.0% Hispanic and 4.4% Asian/other. The prevalence of LUTS was defined by two symptom frequency thresholds, i.e. at least ‘sometimes’ and at least ‘often’ for all LUTS except incontinence, where frequency thresholds were at least ‘a few times per month’ and at least ‘a few times per week’. The prevalence of at least one LUTS at least ‘sometimes’ was 72.3% for men and 76.3% for women, and 47.9% and 52.5% for at least ‘often’ for men and women, respectively. For most LUTS, at least half of the participants were bothered ‘somewhat’ or more using a frequency threshold of at least ‘sometimes’. For a threshold of at least ‘often’, ‘somewhat’ or more bother was reported by ≥70% of participants except for terminal dribble in men and split stream in women. CONCLUSION In this large population study of three countries, LUTS are highly prevalent among men and women aged >40 years. In general, LUTS experienced ‘often’ or more are bothersome to most people.