Patients’ perspective on supposedly patient-relevant process and outcome parameters: a cross-sectional survey within the ‘PRO patients study’

Background To be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes. This implies that studies measure the effects of care based on parameters that are relevant to patients. In a previous scoping review, we found a wide variety of supposedly patient-relevant parameters that equally addressed processes and outcomes of care. We were unable to identify a consistent understanding of patient relevance and therefore aimed to develop an empirically based concept including a generic set of patient-relevant parameters. As a first step we evaluated the process and outcome parameters identified in the scoping review from the patients’ perspective. Methods We conducted a cross-sectional survey among German general practice patients. Ten research practices of Witten/Herdecke University supported the study. During a two-week period in the fall of 2020, patients willing to participate self-administered a short questionnaire. It evaluated the relevance of the 32 parameters identified in the scoping review on a 5-point Likert scale and offered a free-text field for additional parameters. These free-text answers were inductively categorized by two researchers. Quantitative data were analyzed using descriptive statistics. Bivariate analyses were performed to determine whether there are any correlations between rating a parameter as highly relevant and patients’ characteristics. Results Data from 299 patients were eligible for analysis. All outcomes except ‘sexuality’ and ‘frequency of healthcare service utilization’ were rated important. ‘Confidence in therapy’ was rated most important, followed by ‘prevention of comorbidity’ and ‘mobility’. Relevance ratings of five parameters were associated with patients’ age and gender, but not with their chronic status. The free-text analysis revealed 15 additional parameters, 12 of which addressed processes of care, i.e., ‘enough time in physician consultation’. Conclusion Patients attach great value to parameters addressing processes of care. It appears as though the way in which patients experience the care process is not less relevant than what comes of it. Relevance ratings were not associated with chronic status, but few parameters were gender- and age-related. Trial registration Core Outcome Measures in Effectiveness Trials Initiative, registration number: 1685.

Acute Pain Assessment Inadequacy in the Emergency Department: Patients’ Perspective

For many patients, acute pain is a common cause to seek treatment in an Emergency Department (ED). An inadequate assessment could cause inappropriate pain management. The aim of this study was to describe and explain patients’ perceptions of acute pain assessment in the Emergency Department. The data were collected from ED patients (n = 114). Patients reported that nurses were asking about intensity of pain at rest, but only 52% during movement. According to the patients, the most common tools to assess acute pain were the verbal rating scale (VRS; 54% of patients), numerical rating scale (NRS; 28% of patients), and visual analogue scale (VAS; 9.7% of patients). Over twenty per cent of patients stated that ED nurses did not ask about the intensity of pain after analgesic administration. Twenty-four per cent of the patients were not pleased with nursing pain assessment in the ED. The assessment of acute pain is still inadequate in the ED. Therefore, ED nurses need to be more attentive to systematic acute pain management of patients in the ED.

Organizational Health Literacy in a Hospital—Insights on the Patients’ Perspective

Health literacy-sensitive communication has been found to be an important dimension of organizational health literacy measured from the patients’ perspective. Little is known about the role of health literacy-sensitive communication in complex care structures. Therefore, our aim was to assess which hospital characteristics (in terms of process organization) and patient characteristics (e.g., age, chronic illness, etc.) contribute to better perceptions of health literacy-sensitive communication, as well as whether better health literacy-sensitive communication is associated with better patient reported experiences. Data were derived from a patient survey conducted in 2020 in four clinical departments of a university hospital in Germany. Health literacy-sensitive communication was measured with the HL-COM scale. Data from 209 patients (response rate 24.2%) were analyzed with a structural equation model (SEM). Results revealed that no patient characteristics were associated with HL-COM scores. Better process organization as perceived by patients was associated with significantly better HL-COM scores, and, in turn, better HL-COM scores were associated with more patient-reported social support provided by physicians and nurses as well as fewer unmet information needs. Investing into good process organization might improve health literacy-sensitive communication, which in turn has the potential to foster the patient–provider relationship as well as to reduce unmet information needs of patients.

EPOS 4 Patients

EPOS2020 is the 4th and most recent version of the European Position Paper on Rhinosinusitis and Nasal Polyps which was first published in 2005. It aims to provide the most up to date scientifically robust information on the topic published in the literature which has been critically analysed by an international group of clinicians drawn from all disciplines dealing with these problems together with patients. The guidelines offer evidence-based recommendations and care pathways for acute and chronic rhinosinusitis in both adults and children. Management of these diseases from the patients' perspective is an important part of EPOS2020. Not only is this included in the main document but, for the first time, we have produced a separate supplement dedicated to and in collaboration with patients, EPOS4Patients, which aims to provide information in an accessible format, to answer frequently asked questions about these diseases and their treatment options as well as including useful patient resources and websites. It has never been more important for patients to be actively involved in their care. Being well informed helps you to make the best decisions together with your doctor.

The Burden of Cold Agglutinin Disease on Patients’ Daily Life: an Online Survey of 50 American Patients (Preprint)

BACKGROUND Cold agglutinin disease (CAD) is a rare and poorly understood disorder affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, and these did not address the patients’ perspective. OBJECTIVE The aim of this research is to increase the knowledge on CAD through a patient-centric survey and to gain a better understanding of the burden of this disease. METHODS We conducted an internet-based survey in September 2020 among American patients registered on the CAD Unraveled website and members from the Cold Agglutinin Disease Foundation. RESULTS Fifty respondents were included in the study. Ninety percent of patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and almost a third said it was constant through the day. It has also been shown that CAD had a great impact on physical well-being, emotional well-being, social life, and patients’ household finances. The disease varies over time, with or without symptoms. Eighty-eight percent of patients reported previous episodes of increased intensity/sensitivity of their CAD symptoms, with a mean number of episodes reported of 4.5 during the past year. More than half of the patients considered their disease as moderate or severe, and over 40% of the study group reported that their symptoms had worsened since the time of diagnosis. CONCLUSIONS Our study has raised new data on CAD symptoms, in particular on the importance and type of fatigue, and the fluctuation of CAD symptoms.