Patient related Outcome Measures

PURPOSE: To describe the processes of developing domains and items for the MultiMorbidity Questionnaire (MMQ), a multimorbidity-specific PROM for the assessment of Needs-based QoL. PATIENTS AND METHODS: We developed items and domains for the MMQ through 17 qualitative content validity questionnaire interviews with adults with multimorbidity by testing items from an item bank (covering items with content inspired by existing Needs-based QoL measures for single diseases)...

PURPOSE: The purpose of this secondary data analysis was to examine the association between hematologic response and health-related quality of life (HRQoL) among patients with light-chain (AL) amyloidosis. PATIENTS AND METHODS: Data for this secondary analysis were collected through a non-interventional, longitudinal, online self-report survey of patients with AL amyloidosis. Patients completed an initial online survey, with follow-up surveys administered 1, 6, 12, 18, and 24 months after completion of the initial survey...

[This corrects the article DOI: 10.2147/PROM.S151143.].

PURPOSE: Treatment process attributes can affect health state utilities associated with therapy. For intravenous iron, used to treat iron deficiency and iron deficiency anemia, research into process attributes is still lacking. This study estimated utilities associated with process attributes for intravenous iron infusions. METHODS: An online survey including seven health state vignettes and time trade-off tasks was administered to participants, who were not patients living with iron deficiency or iron deficiency anemia, from a Chinese online panel...

BACKGROUND: The health services delivery system is debilitated in conflict setting areas due to damage of health facilities and attack on health care providers. Armed conflict is a complex phenomenon which causes a large amount of death and disability worldwide. However, there is lack of information towards treatment interruption among chronic disease patients in conflict areas. Hence, this study was conducted to assess the prevalence of armed conflict induced treatment interruption and its outcome among chronic disease patients...

PURPOSE: Many patients seeking bariatric surgery experience reduced health-related quality of life (HRQOL). A simple clinical tool, the Patient-Reported Outcomes in Obesity (PROS), was developed to address patients' HRQOL concerns during clinical consultations and facilitate meaningful dialogue. The present study aims to explore its sensitivity to change. PATIENTS AND METHODS: A prospective study of patients undergoing bariatric surgery was conducted. The patients responded to items on the PROS and the Obesity-related Problems Scale (OP) before surgery and three, 12 and 24 months after surgery...

BACKGROUND: One of the key dimensions of healthcare quality is patient-centeredness, which represents how well healthcare is geared towards patients' needs and wishes. Many questionnaires that measure the patient-centeredness are long and complicated, eliciting non-response or careless responding. Moreover, responses to some commonly used questionnaires are difficult to interpret. The Patient-Centeredness Questionnaire-Infertility (PCQ-Infertility) is used to measure the patient's experience of fertility healthcare quality...

Reliability and measurement error are measurement properties that quantify the influence of specific sources of variation, such as raters, type of machine, or time, on the score of the individual measurement. Several designs can be chosen to assess reliability and measurement error of a measurement. Differences in design are due to specific choices about which sources of variation are varied over the repeated measurements in stable patients, which potential sources of variation are kept stable (ie, restricted), and about whether or not the entire measurement instrument (or measurement protocol) was repeated or only part of it...

PURPOSE: Patients with transthyretin amyloidosis (ATTR) experience a wide variety of symptoms and impacts on health-related quality of life (HRQoL). However, the lack of an ATTR-specific patient-reported outcome (PRO) measure has made consistent measurement of HRQoL in ATTR challenging. This paper describes the development of a conceptual model and subsequent content for the Transthyretin Amyloidosis - Quality of Life Questionnaire (ATTR-QOL), an ATTR-specific PRO measure. METHODS: This was a cross-sectional, non-interventional, US-based study...

PURPOSE: Disturbance of consciousness is common in patients with severe anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis. However, little is known about it. This study aimed to analyze the clinical manifestations and prognostic factors of anti-NMDAR encephalitis with disturbance of consciousness. METHODS: In this retrospective study, the clinical features, treatment results, and long-term outcomes of anti-NMDAR encephalitis patients with disturbance of consciousness were analyzed, and multivariate logistic regression was used to analyze the factors affecting their prognosis...

BACKGROUND: The most reliable and meaningful approach for inclusion of patient-reported outcomes (PROs) in the evaluation of real-world clinical effectiveness of biologics in the treatment of autoimmune diseases is u ncertain. This study aimed to assess and compare the proportions of patients who had abnormalities in PROs measuring important general health domains at the initiation of treatment with biologics, as well as the effects of baseline abnormalities on subsequent improvement...

Systemic AL (light chain) amyloidosis is a rare protein misfolding disorder associated with plasma cell dyscrasia affecting various organs leading to organ dysfunction and failure. The Amyloidosis Forum is a public-private partnership between the Amyloidosis Research Consortium and the US Food and Drug Administration Center for Drug Evaluation and Research with the goal of accelerating the development of effective treatments for AL amyloidosis. In recognition of this goal, 6 individual working groups were formed to identify and/or provide recommendations related to various aspects of patient-relevant clinical trial endpoints...

BACKGROUND: Patients undergoing surgery frequently experience unfavorable anesthetic outcomes. They may have an impact on body systems and result in more serious postoperative morbidities. This study was conducted to determine the incidence of postoperative undesirable anesthetic outcomes among surgical patients at referral hospitals in Amhara region, Ethiopia. METHODS: A total of 412 patients, who underwent surgical procedures between August 1 and October 30 of 2022, were included in this study...

PURPOSE: To understand pregnant women's experience with midwifery-led antenatal care services using the Respectful Maternity Care charter in primary health centers in Karachi, Pakistan. METHODS: This cross-sectional study was at Rehri Goth and Ibrahim Hyderi, two peri-urban communities in Karachi, Pakistan, where women receive antenatal care services. All pregnant women in their third trimester who consented during the study period were included. The participants were asked about access to care, antenatal care experience, person-centered approach, and general satisfaction with the facility using a pre-designed questionnaire...

Patient-reported outcomes (PROs) provide a valid, standardized way of assessing symptoms, adverse events and the subjective benefit of treatment from the patient's perspective. Assessment of PROs is critical in ovarian cancer due to the high morbidity of the disease and its treatments. Several well-validated PRO measures are available to assess PROs in ovarian cancer. Their inclusion in clinical trials can provide evidence on the benefits and harms of new treatments based on patients' experiences to guide improvements in clinical practice and health policy...

BACKGROUND: Surveys of back pain sufferers in the United States, China, Russia, and Germany were performed to better understand self-reported causes of acute nonspecific back pain and acute lower back pain among individuals engaging in sports and their preferred treatments. METHODS: In each country, 1000 participants were surveyed (Step 1) to identify a population of nonspecific acute back pain sufferers, understand pain and treatment characteristics, and generate profiles for individuals with long-lasting (≥7 days) acute lower back pain...

INTRODUCTION: Atherosclerotic Cardiovascular Disease (ASCVD) is the leading cause of death worldwide. In Diabetics, ASCVD is associated with poor prognosis and a higher case fatality rate compared with the general population. Sub-Saharan Africa is facing an epidemiological transition with ASCVD being prevalent among young adults. To date, over 20 million people have been living with DM in Africa, Tanzania being one of the five countries in the continent reported to have a higher prevalence...

BACKGROUND: Traumatic brain injury is a major list of health and socioeconomic problems especially in low- and middle-income countries which influences productive age groups. Differences in patient characteristics, socioeconomic status, intensive care unit admission thresholds, health-care systems, and the availability of varying numbers of intensive care unit (ICU) beds among hospitals had shown to be the causes for the variation on the incidence in mortality following traumatic brain injury across different continents...

PURPOSE: Sleep disturbance is common in patients with asthma and can lead to subsequent impacts on health-related quality of life (HRQOL). Fit-for-purpose patient-reported outcome measures (PROMs) assessing asthma-related sleep disturbance and next-day HRQOL impact (next-day impact) are needed to evaluate disease burden and treatment effects. PATIENTS AND METHODS: Adults (18-65 years) from three US clinics were recruited for semistructured interviews. Concept elicitation (CE) identified how asthma affects participants' sleep and how asthma-related sleep disturbances impact their daily lives, which informed conceptual model development...

INTRODUCTION: Decision aids are effective tools in facilitating patient-centered care and patient involvement in the decision-making process. Given unique barriers to providing patient-centered care for Veterans, implementation of decision aids may improve overall quality of care. We aimed to assess the acceptability and feasibility of video-based and pamphlet-based decision aid use in Veterans with knee osteoarthritis. MATERIALS AND METHODS: Veterans considering treatment for knee osteoarthritis received either an online video-based aid, pamphlet-based aid, or both before their surgical consult...