scholarly journals Patients’ Experiences With Staphylococcus aureus and Gram-negative Bacterial Bloodstream Infections: A Qualitative Descriptive Study and Concept Elicitation Phase To Inform Measurement of Patient-reported Quality of Life

2020 ◽  
Author(s):  
Heather A King ◽  
Sarah B Doernberg ◽  
Julie Miller ◽  
Kiran Grover ◽  
Megan Oakes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Staphylococcus Aureus ◽  
Bloodstream Infection ◽  
Bloodstream Infections ◽  
Patient Centered ◽  
Gram Negative ◽  
Concept Elicitation ◽  
Patient Reported ◽  
Disease Specific

Abstract Background Although Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) cause substantial morbidity, little is known regarding patient perceptions’ of their impact on quality of life (QOL). Guidance for assessing QOL and disease-specific measures are lacking. We conducted a descriptive qualitative study to gain an in-depth understanding of patients’ experiences with SAB/GNB and concept elicitation phase to inform a patient-reported QOL outcome measure. Methods We conducted prospective one-time, in-depth, semi-structured, individual, qualitative telephone interviews 6– 8 weeks following bloodstream infection with either SAB or GNB. Patients were enrolled in an institutional registry (tertiary academic medical center) for SAB or GNB. Interviews were audio-recorded, transcribed, and coded. Directed content analysis identified a priori and emergent themes. Theme matrix techniques were used to facilitate analysis and presentation. Results Interviews were completed with 30 patients with SAB and 31 patients with GNB. Most patients were at or near the end of intravenous antibiotic treatment when interviewed. We identified 3 primary high-level concepts: impact on QOL domains, time as a critical index, and sources of variability across patients. Across both types of bloodstream infection, the QOL domains most impacted were physical and functional, which was particularly evident among patients with SAB. Conclusions SAB/GNB impact QOL among survivors. In particular, SAB had major impacts on multiple QOL domains. A combination of existing, generic measures that are purposefully selected and disease-specific items, if necessary, could best capture these impacts. Engaging patients as stakeholders and obtaining their feedback is crucial to conducting patient-centered clinical trials and providing patient-centered care.

scholarly journals Patients’ Experiences with Staphylococcus aureus and Gram-Negative Bacterial Bloodstream Infections: Results from Cognitive Interviews to Inform Assessment of Health-Related Quality of Life

2021 ◽  
Author(s):  
Heather A King ◽  
Sarah B Doernberg ◽  
Kiran Grover ◽  
Julie Miller ◽  
Megan Oakes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Staphylococcus Aureus ◽  
Bloodstream Infections ◽  
Cognitive Interviews ◽  
Health Related Quality ◽  
Gram Negative ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background We previously conducted a concept elicitation study on the impact of Staphylococcus aureus and Gram-negative bacterial bloodstream infections (SAB/GNB) on health-related quality of life (HRQoL) from the patient’s perspective and found significant impacts on HRQoL, particularly in physical and functional domains. Using this information and following guidance on the development of patient-reported outcome (PRO) measures, we determined which combination of measures and items (i.e., specific questions) would be most appropriate in a survey assessing HRQoL in bloodstream infections. Methods We selected a variety of measures/items from PROMIS ® (Patient-Reported Outcomes Measurement Information System ®) representing different domains. We purposefully sampled patients approximately 6-12 weeks post SAB/GNB and conducted two rounds of cognitive interviews to refine the survey by exploring patients’ understanding of items and answer selection as well as relevance for capturing HRQoL. Results We interviewed 17 SAB/GNB patients. Based on the first round of cognitive interviews (n=10), we revised the survey. After round two of cognitive interviewing (n = 7), we finalized the survey to include 10 different PROMIS ® short form measures of the most salient HRQoL domains and 2 adapted questions (41 items total), which were found to adequately capture HRQoL. Conclusion We developed a survey from well-established PRO measures that captures what matters most to SAB/GNB patients as they recover. This survey, uniquely tailored to bloodstream infections, can be used to assess these meaningful, important HRQoL outcomes in clinical trials and in patient care. Engaging patients is crucial to developing treatments for bloodstream infections.

scholarly journals Validation of a simple disease-specific, quality-of-life measure for diabetic polyneuropathy

Neurology ◽  
2018 ◽  
Vol 90 (23) ◽  
pp. e2034-e2041 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Reza Sadjadi ◽  
William B. Horton ◽  
Mark R. Conaway ◽  
Carolina Barnett-Tapia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetic Polyneuropathy ◽  
Well Being ◽  
Ease Of Use ◽  
Sensorimotor Polyneuropathy ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

ObjectiveWe studied the performance of a 15-item, health-related quality-of-life polyneuropathy scale in the clinic setting in patients with diabetic distal sensorimotor polyneuropathy (DSPN).MethodsPatients with DSPN from 11 academic sites completed a total of 231 Chronic Acquired Polyneuropathy Patient-Reported Index (CAPPRI) scales during their clinic visits. Conventional and modern psychometric analyses were performed on the completed forms.ResultsConventional and modern analyses generally indicated excellent psychometric properties of the CAPPRI in patients with DSPN. For example, the CAPPRI demonstrated unidimensionality and performed like an interval-level scale.ConclusionAttributes of the CAPPRI for DSPN include ease of use and interpretation; unidimensionality, allowing scores to be summed; adequate coverage of disease severity; and the scale's ability to address relevant life domains. Furthermore, the CAPPRI is free and in the public domain. The CAPPRI may assist the clinician and patient with DSPN in estimating disease-specific quality of life, especially in terms of pain, sleep, psychological well-being, and everyday function. The CAPPRI may be most useful in the everyday clinical setting but merits further study in this setting, as well as the clinical trial setting.

OP95 Are Patient-Reported Outcome Measures Meeting Today's Standards?

2018 ◽  
Vol 34 (S1) ◽  
pp. 34-35
Author(s):  
Elisabeth Oehrlein ◽  
Eleanor Perfetto ◽  
T. Rose Love ◽  
Yujin Chung ◽  
Parima Ghafoori
Keyword(s):  
Outcome Measures ◽  
Patient Engagement ◽  
Rating Scale ◽  
Psychometric Validation ◽  
Cognitive Interviewing ◽  
Patient Centered ◽  
Concept Elicitation ◽  
Patient Diary ◽  
Patient Reported ◽  
Disease Specific

Introduction:Over the past decade, health technology assessment (HTA) agencies have become interested in improving the patient-centeredness of their assessments. A common approach has been to prioritize patient-reported outcomes (PROs), often describing PROs as patient-relevant or patient-oriented. However, it is often unclear whether and to what degree PRO measures (PROMs) truly reflect what is important to patients. This review examined the pedigree of a sample of measures used as primary or secondary endpoints in trials and discussed in Food and Drug Administration (FDA) approved product labels between 2003 and 2014.Methods:We examined all 26 PROs included in chapters 1 (Office of Microbial Products) and 2 (Office of Drug Evaluation I) of the FDA's Pilot Clinical Outcome Assessment (COA) Compendium. Three reviewers independently searched PubMed and Google to identify publications or other relevant materials related to method and stage of measure development where patient engagement took place.Results:Among 26 evaluated PROMs, we were unable to locate any information on development or validation for 12 (patient diary=9; rating scale=3). Among the remaining 14 PROMs, 5 did not include any evidence of patient engagement (questionnaire=1; patient diary=2; rating scale=2); 3 engaged patients during concept elicitation or psychometric validation only (disease-specific questionnaires=3); and 6 engaged patients during both concept elicitation and cognitive interviewing (disease-specific questionnaires=6). PROMs either previously qualified or submitted for qualification by FDA were more likely to include patient engagement.Conclusions:PROs can provide patient-centered data useful for HTA; however, patient-reported information is not inherently patient-centered. This study found that only a minority of sampled PROMs engaged patients during both concept elicitation and cognitive interviewing. To facilitate patient-centered HTA, manufacturers should ensure that PROMs incorporated into clinical trials measure concepts important to patients. Similarly, HTAs should request data on development and validation of all outcome measures incorporated into trials.

scholarly journals Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument

2015 ◽  
Vol 54 (1) ◽  
pp. 9-17 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Mark R. Conaway ◽  
Reza Sadjadi ◽  
Amruta Joshi ◽  
Carolina Barnett ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Life Instrument ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific ◽  
Specific Health

Patient-reported disease-specific quality-of-life and symptom severity in systemic mastocytosis

Allergy ◽  
2016 ◽  
Vol 71 (11) ◽  
pp. 1585-1593 ◽  
Author(s):  
B. van Anrooij ◽  
J. C. Kluin-Nelemans ◽  
M. Safy ◽  
B. M. J. Flokstra-de Blok ◽  
J. N. G. Oude Elberink
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Systemic Mastocytosis ◽  
Patient Reported ◽  
Disease Specific

scholarly journals Prevalence of Low-Value Care and Its Associations with Patient-Centered Outcomes in Dementia

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Models Of Care ◽  
Adverse Outcomes ◽  
Future Research ◽  
Patient Centered ◽  
Treatment Pathways ◽  
Patient Reported ◽  
Evidence Based Treatments ◽  
Related Quality

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.

scholarly journals The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life

2021 ◽  
Author(s):  
Helen Beckmann ◽  
Christoph Heesen ◽  
Matthias Augustin ◽  
Christine Blome
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Construct Validity ◽  
Convergent Validity ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Patient Reported ◽  
Disease Specific

Abstract Background: Treatment- and work-related aspects have been neglected in health-related quality of life (HRQOL) measures in multiple sclerosis (MS). We aimed to develop a brief instrument covering all important impairment-, activity-, participation-, and treatment-related aspects for use in research and practice. Methods: The 27-item Multiple Sclerosis Quality of Life Questionnaire (MS-QLQ27) was developed using open item collection, a multidisciplinary expert panel, and cognitive pretesting. It was evaluated for reliability, construct validity, and responsiveness with 100 patients presenting with relapse (84 at follow-up ~14 days later). Construct validity was analyzed by correlating the MS-QLQ27 with the disease-specific Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and generic HRQOL instuments. The Expanded Disability Status Scale (EDSS) was used to analyze known-groups validity. Responsiveness was determined as the correlation of changes in MS-QLQ27 scores with changes in validation criteria. Results: Internal consistency was high (Cronbach α = 0.94 at baseline and 0.93 at follow-up). Convergent validity was supported by direction and magnitude of associations with disease-specific and generic instruments. Correlations with change in convergent criteria were strong, indicating responsiveness. The HAQUAMS showed the strongest associations with the MSQLQ27. The MS-QLQ27 showed the highest effect size compared with other patient-reported outcomes and the EDSS. It successfully distinguished between levels of disease severity. Conclusions: These results indicate that the MS-QLQ27 is a reliable, valid, and highly responsive instrument for assessing HRQOL during relapse evolution in MS. Its advantages are that it is brief yet comprehensive, covering work- and treatment-related aspects not addressed in previous measures.

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