Assessment Of Patient Perspectives Research Articles

Assessment of Patient Perspectives and Barriers to Self-Infusion of Augmentation Therapy for Alpha-1 Antitrypsin Deficiency During the COVID-19 Pandemic.

IntroductionAlpha-1 antitrypsin (AAT) deficiency is an autosomal co-dominant genetic condition that predisposes individuals to pulmonary and hepatic disease, and in severe cases is treated with augmentation by intravenous infusion. Our aim was to assess patient reluctance to transition to self-administered augmentation of alpha-1-antitrypsin, during the pandemic of SARS-CoV-2.MethodsA phone questionnaire was administered to 22 patients with severe alpha-1-antitrypsin deficiency who were currently receiving AAT augmentation therapy. Inclusion criteria included patients ge 18 years old, diagnosed with AATD, and receiving intravenous AAT protein augmentation therapy. Information was gathered regarding demographics, perspectives on transitioning to self-administered treatment, and anxiety and depression prevalence. Results were collected anonymously using REDCap. Joint and marginal statistical analysis was done to quantify links between participants’ willingness to transition to self-infusion and correlations with sex, age, years of therapy, anxiety, and depression.ResultsOf 22 patients, 14 were male and eight were female. Ages ranged from 36 to 79 years, with an average of 62.5. Genotypes were ZZ (14), MZ (3), and SZ (2) among others. Average length of intravenous augmentation was 9.5 years. The majority, 16 participants, were aware self-infusion was an option. Eight participants were willing to consider transitioning to self-infusion if trained and educated. Eight patients reported that fear of COVID-19 transmission influenced their decision-making. Above-normal anxiety, and depression scores, were found in four, and six patients, respectively. Neither sex, age, years of treatment, anxiety, or depression were found to be associated with willingness to consider self-infusion therapy.ConclusionsAlthough there are many reasons AATD patients may benefit from AAT self-infusion, including decreased exposure to SARS-CoV-2, the majority preferred home nurse-infused therapy.Supplementary InformationThe online version contains supplementary material available at 10.1007/s41030-022-00182-z.

An assessment of patient perspectives on pharmacogenomics educational materials.

Aim:Pharmacogenomics (PGx) holds potential to improve patient treatment; yet, effective patient educational materials are limited.Materials & methods:Using a ‘think aloud’ technique, we sought to understand comprehension and perceptions of a multimedia PGx results packet including a cover letter with QR code to an educational video, brochure and prototype report in the context of PGx case vignettes.Results:The cover letter and video components were viewed less favorably due to excess detail, complex jargon and technology challenges. Recommendations were to enhance comprehension and utility and to customize materials to each patient’s medications or disease conditions.Conclusion:Educational materials were revised to improve comprehension and usability, and diminish concerns to better prepare patients to understand the importance of discussing test results with their provider.

32 Do low-risk patients with non-cardiac chest pain prefer early discharge after rapid rule-out in the emergency department?

BackgroundThere has been a recent drive to implement rapid rule-out strategies which allow the early discharge of low-risk patients with suspected cardiac chest pain directly from the Emergency Department (ED)....

Universal Screen for Lynch Syndrome in an Integrated Health Care System: Assessment of Patient Perspectives and Sharing Results With At-Risk Relatives

Universal Screen for Lynch Syndrome in an Integrated Health Care System: Assessment of Patient Perspectives and Sharing Results With At-Risk Relatives

Patient perspectives and experience with dalfampridine treatment in multiple sclerosis-related walking impairment: the step together program.

BackgroundDalfampridine extended-release tablets (dalfampridine-ER; in Europe, prolonged-release fampridine, and elsewhere, fampridine modified or fampridine sustained release), 10 mg twice daily, are available for the treatment of improvement of walking in patients with multiple sclerosis, as demonstrated by an increase in walking speed. On-drug patient perspectives and experiences are valuable to understand and manage this patient population.ObjectiveThe objective of this study was to examine perspectives and experiences of patients receiving dalfampridine-ER in a real-world setting.MethodsStep Together, an ongoing program that captures real-world patient experience with dalfampridine-ER treatment, consists of a survey administered at baseline (before dalfampridine-ER initiation) and at 30 (first follow-up) and 60 days (second follow-up) after initiation. The survey includes modified versions of the 12-item Multiple Sclerosis Walking Scale (mMSWS-12) and the Sheehan Disability Scale (mSDS) to assess walking ability and functional impairment, respectively.ResultsAs of September 2013, 2,248 patients participated in the baseline survey and 522 completed both follow-up surveys (completers). Among the completers, improvements in walking ability and function relative to baseline were significant at both follow-ups as measured by mMSWS-12 and mSDS scores, respectively. Notably, 69–74 % of completers at both follow-ups had improved mMSWS-12 scores, with scores greater than the range considered to be minimally clinically significant. Patients who completed the program expressed satisfaction with overall dalfampridine-ER treatment, and 69 % indicated that the survey would help them communicate better with their healthcare providers.ConclusionResults highlight the utility of patient-reported outcomes in the assessment of patient perspective and experience, providing a useful supplement to traditional objective measures used in clinical studies.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-014-0102-z) contains supplementary material, which is available to authorized users.

Abstract 124: Patient-Identified Factors Related to Heart Failure Readmissions

Background : Readmission following hospitalization for heart failure (HF) has received increasing attention yet relatively little is known about its root causes. The purpose of our study was to systematically investigate the experiences of patients to gain a better understanding of factors related to readmission. Although prior studies have relied on administrative databases, retrospective chart review, and single-question surveys, ours involves systematic, in-depth primary data collection. Methods : Qualitative semi-structured interviews, paired with chart reviews, were conducted on 28 patients readmitted within 6 months of index hospitalization for HF. Interview questions focused on reasons for readmission and other readmission-related topics and suggestions for improving care. Combinations of both inductive and deductive qualitative approaches were used to code and interpret data. Results : Patient median age was 61, 29% were African American, Latino, or Native American, 50% were married, 32% had preserved ejection fraction, with multimorbidity common. Adherence to self-care behaviors (diet, fluid, medications) was high for most patients. Depression and anxiety, comorbidities, access to care, and economic hardship were identified as significant difficulties for many patients in managing HF. Patient perspectives on the causes of readmission coalesced into 4 common themes: 1) symptom focused (rather than diagnoses based), 2) readmission was unavoidable, often due to the inexorable progression of HF, 3) self-blaming for behaviors related to self care, and 4) health care system failures, including premature discharge from index hospitalization. Interestingly, patient perspectives about reasons for readmission were multi-dimensional in nature, with any single reason rarely given. Patient interviews and provider documentation in charts, while not conflicting, generally did not offer similar causes of readmission in the majority of cases. Conclusions : Our study provides the first systematic qualitative assessment of patient perspectives on HF readmission. Contrary to previous research, we found that patient experiences highlighted a variety of contributing factors for readmission which made it difficult to categorize a readmission as preventable. These findings highlight the importance of considering the patient perspective in designing policies and interventions aimed at reducing unnecessary HF readmissions.

Patient Perceptions of Voice Therapy Adherence

Patient perspectives of behavioral voice therapy, including perspectives of treatment adherence, have not been formally documented. Because treatment adherence is, to a large extent, determined by patient beliefs, assessment of patient perspectives is integral to the study of adherence. Fifteen patients who had undergone at least two sessions of direct voice therapy for a variety of voice disorders/complaints were interviewed about their perspectives on voice therapy, with a particular focus on adherence. Interviews were transcribed and analyzed for content according to qualitative methods. Three common content themes emerged from the transcripts: Voice Therapy is Hard, Make it Happen, and The Match Matters. Findings were compared with reports of patient experiences in other behavioral interventions, such as diet and exercise, and related to existing theoretical models of behavior change and therapeutic process. This study yields information toward the development of scales to measure adherence-related constructs and strategies to improve treatment adherence in voice therapy.

Determinants of Quality of Life for Patients With Kidney Stones

We evaluated various factors relating to quality of life in a population of patients with stones. A total of 155 patients seen at our urology clinic for stones between January and May 2007 were prospectively questioned regarding stone history and were administered the SF-36 questionnaire to assess quality of life. Age, body mass index, American Society of Anesthesiologists score, number of stone episodes, interval from the last stone episode, number of surgical procedures for stones and associated complications, missed days of work and long-term medical treatment were elicited from the patients. Individual SF-36 domains and composite scores were compared to those of the American general population. Univariate and multivariate regression analyses were performed to assess the impact of all covariates on quality of life scores. Patients with stones scored lower than the average American population in 5 of the 8 domains of the SF-36 as well as in the physical composite score. Multivariate regression modeling showed that increasing body mass index and age were the strongest predictors of decreased physical well-being. The number of stone episodes did not influence SF-36 scores, although the number of surgical procedures impacted physical and mental components. The number of ureteroscopy procedures and stent placements primarily impacted mental well-being. Medical therapy, particularly the use of potassium citrate, was associated with more favorable quality of life. Various factors impact quality of life in patients with urolithiasis but the most important are body mass index, age and the number of surgical procedures. Prospective longitudinal studies may further elucidate the determinants of quality of life and they might be used to optimize patient care.

Patient desires: A model for assessment of patient preferences for care of severe or terminal illness

Patient-centered care is better achieved through a comprehensive understanding of patients' preferences for how they want to live their life and how they want to influence their own death. Though much has been written on identifying goals of care, it is often difficult for clinicians to articulate patient goals to guide care planning. We explored the literature on patient's preferences for their care in chronic or life-limiting illness to develop a model for assessment of patient perspectives. We then illustrated our model with composite patients from our clinics and we provide questions to guide patient discussion. We searched MEDLINE from 1986 to 2004 for primary research articles that relate primarily to a patient's preferences for his or her care. We reviewed over 3500 titles, abstracts, and research papers. Hundreds of articles described patients' quality of life, health status, or satisfaction. We excluded consensus guidelines, non-English papers, reviews, and articles focused on medical professional perspectives. Forty-eight studies focused primarily on patient preferences. Using an iterative process, we identified unique issues and broader themes in patients' desires for their care. Studies focused on patients with cancer, those in hospice or those with terminal disease. Three domains emerged: patient feelings about disease, feelings about suffering, and feelings about the circumstances of death. Attention was given to the differences between patients in terms of the strength and persistence of feelings in each domain. Based on existing data, there are three fundamental domains of patient perspective that influence preferences for care. These domains can be assessed by the care team to guide the development of a plan of care and to identify areas of conflict. Our review identifies gaps in the end-of-life literature and areas for future work in patient preferences.

Nephrostomy Tube or ‘JJ’ Ureteric Stent in Ureteric Obstruction: Assessment of Patient Perspectives Using Quality–of–Life Survey and Utility Analysis

Introduction: Upper urinary tract obstruction is often relieved by either a percutaneous nephrostomy tube (PCN) or a ureteric stent. Both can cause considerable morbidity and reduce patient’s health–related quality of life (QoL). We have compared the QoL in these 2 groups. Patients and Methods: 34 patients (21 stent and 13 PCN) with unilateral ureteric obstruction were prospectively studied. Each patient completed a questionnaire, which included a common single health index (EuroQol EQ–5D) and intervention–specific questions to assess pain, urinary symptoms and day–to–day problems. Results: There were 22 male and 12 female patients [mean age 56±9 years (PCN) and 55±14 years (stent)]. The mean duration between the intervention and conduct of the survey was 12±5 days for PCN and 28±14 days for stent. There was no different in the mean EuroQol score (p = 0.199) and analogue score (p = 0.596) indicating no differences in the gross defects in physical and psychosocial function and the utility between the 2 groups. There was a significant difference in the urinary symptoms (p<0.0001) with patients who had a stent experiencing significantly more irritative urinary symptoms. This group also suffered discomfort for a greater duration and in various postures requiring more analgesia (although not significant with Bonferroni correction). Patients with PCN required more help in the daily care of the nephrostomy tube. There was no difference in the incidence of infections and the need for antibiotics. Conclusions: Patients with ‘JJ’ stents have significantly more irritative urinary symptoms and a high chance of local discomfort than patients with nephrostomy tubes (PCN). However, based on the EuroQol analysis, there is no significant difference in the gross impact on the health–related QoL or the utility between these groups indicating no patient preference for either modality of treatment.