scholarly journals Assessment of Patient Experience of Care in Home Dialysis Around the World: Enhancing the Patient’s Voice in Home Dialysis Care and Research

2021 ◽  
Vol 4 (3) ◽  
pp. 151-163
Author(s):  
Matthew Rivara
Keyword(s):  
Safety Concern ◽  
Care Patient ◽  
Dialysis Patients ◽  
Patient Centered ◽  
Linguistic Validation ◽  
Home Dialysis ◽  
Care Experience ◽  
Experience Of Care ◽  
Patient Reported

With the global growth in the use of home dialysis modalities, there is a need to better understand patients’ experiences with their home dialysis care.  Patient-reported experience measures or PREMs, are standardized survey questionnaires that allow patients to provide input on processes and experiences of care in a confidential and validated manner.  Until recently, no validated PREM has been available for assessment of patient-reported experience of care for home dialysis modalities, including peritoneal dialysis or home hemodialysis.  The Home Dialysis Care Experience instrument (Home-DCE) is a newly developed and content-valid PREM for use among patients treated with home dialysis modalities.  The survey instrument includes 26 core survey questions and 20 demographic questions, and is now available in English, Spanish, and French.  Domains of care assessed in the Home-DCE include staff education and patient-centered communication, care coordination, patient safety, concern and helpfulness of the care team, and staff care proficiency.  Worldwide use of the Home-DCE will allow incorporation of patients’ experiences and preferences in initiatives to enhance quality of care for home dialysis patients globally.  Translation and deployment of a PREM in additional languages should be done using established cultural adaptation methods, the gold standard for which is termed linguistic validation.  Translation and linguistic validation are hurdles to global use of the Home-DCE, but challenges that should be met to enhance home dialysis patients’ voice in clinical kidney care.

scholarly journals Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis

2021 ◽  
pp. CJN.15570920
Author(s):  
Matthew B. Rivara ◽  
Todd Edwards ◽  
Donald Patrick ◽  
Lisa Anderson ◽  
Jonathan Himmelfarb ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Content Validity ◽  
Cognitive Debriefing ◽  
Home Hemodialysis ◽  
Home Dialysis ◽  
Care Experience ◽  
Concept Elicitation ◽  
Experience Of Care ◽  
Patient Reported ◽  
Experience Measure

Background and objectivesThe population of patients with kidney failure in the United States using home dialysis modalities is growing rapidly. Unlike for in-center hemodialysis, there is no patient-reported experience measure for assessment of patient experience of care for peritoneal dialysis or home hemodialysis. We sought to develop and establish content validity of a patient-reported experience measure for patients undergoing home dialysis using a mixed methods multiple stakeholder approach.Design, setting, participants, & measurementsWe conducted a structured literature review, followed by concept elicitation focus groups and interviews among 65 participants, including 21 patients on home dialysis, 33 home dialysis nurses, three patient care partners, and eight nephrologists. We generated a list of candidate items for possible measure inclusion and conducted a national prioritization exercise among 91 patients on home dialysis and 39 providers using a web-based platform. We drafted the Home Dialysis Care Experience instrument and conducted cognitive debriefing interviews to evaluate item interpretability, order, and structure. We iteratively refined the measure on the basis of interview findings.ResultsThe literature review and concept elicitation phases supported 15 domains of home dialysis care experience in six areas: communication and education of patients, concern and helpfulness of the care team, proficiency of the care team, patient-centered care, care coordination, and amenities and environment. Focus groups results showed that domains of highest importance for measure inclusion were patient education and communication, care coordination, and personalization of care. Prioritization exercise results confirmed focus group findings. Cognitive debriefing indicated that the final measure was easily understood and supported content validity.ConclusionsThe Home Dialysis Care Experience instrument is a 26-item patient-reported experience measure for use in peritoneal dialysis and home hemodialysis. The Home Dialysis Care Experience instrument represents the first rigorously developed and content-valid English-language instrument for assessment of patient-reported experience of care in home dialysis.

The use of cognitive interviews to revise the Quality of Trauma Care Patient-Reported Experience Measure (QTAC-PREM)

2015 ◽  
Vol 24 (8) ◽  
pp. 1911-1919 ◽  
Author(s):  
Niklas Bobrovitz ◽  
Maria J. Santana ◽  
Theresa Kline ◽  
John Kortbeek ◽  
Henry T. Stelfox
Keyword(s):  
Trauma Care ◽  
Care Patient ◽  
Cognitive Interviews ◽  
Quality Of Trauma Care ◽  
Patient Reported ◽  
Experience Measure

Improving quality of life for dialysis patients through telecare

2000 ◽  
Vol 6 (1_suppl) ◽  
pp. 80-83 ◽  
Author(s):  
Karl A Stroetmann ◽  
Peter Gruetzmacher ◽  
Veli N Stroetmann
Keyword(s):  
Quality Of Life ◽  
Low Cost ◽  
Video Communication ◽  
Daily Routine ◽  
Dialysis Patients ◽  
Home Dialysis ◽  
Service Support ◽  
Initial Results ◽  
Selection Of

Home dialysis can improve the care and quality of life for patients with renal failure. We have explored the possibility of extending home care to more patients needing continuous ambulatory peritoneal dialysis (CAPD) using telemedicine. We tested videoconferencing support for five CAPD patients using low-cost ISDN equipment (128 kbit/s). Initial results indicated that it was possible to integrate video-communication into the daily routine of the clinic and the response from patients was surprisingly positive. Selection of appropriate, affordable technology and the ISDN service support by the telecommunications provider proved to be considerably more difficult than anticipated. The first indications also suggest medical advantages for home teledialysis.

Creation of a Tool to Evaluate Supportive Care: Experiences from Socioesthetics

2021 ◽  
Author(s):  
Damien Giacchero ◽  
Guillaume Buiret ◽  
Cecile Grosjean ◽  
CHARLES TAIEB ◽  
Mahasti Saghatchian ◽  
...  
Keyword(s):  
Supportive Care ◽  
External Validation ◽  
Care Patient ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Research Teams ◽  
Patient Reported ◽  
The Impact ◽  
Published Research

Abstract The absence of a specific tool to evaluate the impact of Supportive care in general and socioesthetics in particular as a rendered medical service is undoubtedly at the origin of the lack of published research based on scientific standards.In this context, we developed one supportive-care patient-reported outcome [PRO] using the multistep methods following COSMIN recommendations. Its construction followed all recommended steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test-retest validation and translation, cross-cultural adaptation and cognitive debriefing. In total, our questionnaire includes11 items. It is scored by adding each VAS, making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach’s α coefficient is 0.88 for the entire questionnaire. The questionnaire thus constructed is a reflection of the patient's feelings, and it is quite natural that the name The “patient centricity questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the PSS, positively and moderately with the mental dimension of the and poorly with the WB12, the physical dimension of the SF-12 and the satisfaction EVA. Constructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format (11 questions) and simplicity of use allow it to be used by a large number of people and provides an pragmatic answer by making available to research teams a simple, reliable, easy-to-use and validated tool. It makes possible randomized studies to prove the impact on quality of life of the Supportive care in general and socioesthetics" in particular.

scholarly journals An Environmental Scan and Evaluation of Home Dialysis Quality Indicators Currently Used in Canada

2020 ◽  
Vol 7 ◽  
pp. 205435812097739
Author(s):  
Lisa Dubrofsky ◽  
Ali Ibrahim ◽  
Karthik Tennankore ◽  
Krishna Poinen ◽  
Sachin Shah ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Quality Of Care ◽  
Peritoneal Dialysis ◽  
Quality Indicators ◽  
Patient Centered ◽  
High Quality ◽  
Home Dialysis ◽  
Environmental Scan ◽  
Starting Point

Background: Quality indicators are important tools to measure and ultimately improve the quality of care provided. Performance measurement may be particularly helpful to grow disciplines that are underutilized and cost-effective, such as home dialysis (peritoneal dialysis and home hemodialysis). Objective: To identify and catalog home dialysis quality indicators currently used in Canada, as well as to evaluate these indicators as a starting point for future collaboration and standardization of quality indicators across Canada. Design: An environmental scan of quality indicators from provincial organizations, quality organizations, and stakeholders. Setting: Sixteen-member pan-Canadian panel with expertise in both nephrology and quality improvement. Patients: Our environmental scan included indicators relevant to patients on home dialysis. Measurements: We classified existing indicators based on the Institute of Medicine (IOM) and Donabedian frameworks. Methods: To evaluate the indicators, a 6-person subcommittee conducted a modified version of the Delphi consensus technique based on the American College of Physicians/Agency for Healthcare Research and Quality criteria. We shared these consensus ratings with the entire 16-member panel for further examination. We rated items from 1 to 9 on 6 domains (1-3 does not meet criteria to 7-9 meets criteria) as well as a global final rating (1-3 unnecessary to 7-9 necessary) to distinguish high-quality from low-quality indicators. Results: Overall, we identified 40 quality indicators across 7 provinces, with 22 (55%) rated as “necessary” to distinguish high quality from poor quality care. Ten indicators were measured by more than 1 province, and 5 of these indicators were rated as necessary (home dialysis prevalence, home dialysis incidence, anemia target achievement, rates of peritonitis associated with peritoneal dialysis, and home dialysis attrition). None of these indicators captured the IOM domains of timely, patient-centered, or equitable care. Limitations: The environmental scan is a nonexhaustive list of quality indicators in Canada. The panel also lacked representation from patients, administrators, and allied health professionals. Conclusions: These results provide Canadian home dialysis programs with a starting point on how to measure quality of care along with the current gaps. This work is an initial and necessary step toward future collaboration and standardization of quality indicators across Canada, so that home dialysis programs can access a smaller number of highly rated balanced indicators to motivate and support patient-centered quality improvement initiatives.

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.

Communicating Oncologic Prognosis with Empathy (COPE).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 38-38
Author(s):  
Farya Phillips ◽  
Boone W Goodgame ◽  
Barbara L Jones
Keyword(s):  
Treatment Plan ◽  
Treatment Options ◽  
Accurate Information ◽  
Healthcare Team ◽  
Medical Team ◽  
Patient Centered ◽  
Incurable Cancer ◽  
Patient Reported ◽  
Post Test

38 Background: Clear communication between patients and providers is imperative to maximize patient outcomes, particularly for patients with incurable cancer who require prompt engagement in decision-making. In response to the need to engage in quality patient-centered communication, an interprofessional team, representing medicine, nursing, social work, and spiritual care developed a simple, single-page tool that summarizes the prognosis and treatment plan for patients with incurable cancers. This pilot study evaluates the communication guide, Communicating Oncologic Prognosis with Empathy (COPE), for discussing prognosis and treatment options for cancer patients. Methods: A pilot test of 30 participants with incurable cancer was completed at an oncology clinic. The communication guide was evaluated using a pre- and post-test design, participants completed a prognosis and treatment perception survey (PTPQ) prior to their first oncology appointment. Patients then met with their oncologist and the COPE guide was used to guide the discussion and patients received a copy of the COPE guide. The COPE guide was placed in the patient chart and other members of the healthcare team were able to use the tool to provide the patient with support and explore the patient’s response to information received. Patients completed the post-test PTPQ at 4 week follow up and completed exit interviews to assess patient reported impact on communication with medical team, caregivers, and quality of life. Results: Key findings revealed participants prefer receiving detailed information about prognosis and have differing perceptions about goals of treatment compared to the oncology team. The tool seemed to facilitate mostly accurate information recall regarding prognosis and treatment options. Conclusions: Despite the high value patients placed on knowing about prognosis and quality of communication with their medical team, the majority reported incongruent goals of treatment and likelihood of cure compared with their oncologist, highlighting major gaps in patients’ understanding of their prognosis. The COPE guide serves as a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.

Self-reported patient experience and quality of care among elderly patients with colon cancer.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 33-33 ◽  
Author(s):  
Rebecca A Snyder ◽  
Rebecca Wardrop ◽  
Alexander Mclain ◽  
Alexander A. Parikh ◽  
Anna Cass
Keyword(s):  
Health Care ◽  
Patient Experience ◽  
Cancer Care ◽  
Health Care Quality ◽  
Care Quality ◽  
Stage I ◽  
Stage Iii ◽  
Experience Of Care ◽  
Patient Reported

33 Background: Although studies have identified demographic and clinical factors associated with quality colorectal cancer care, the association between patient-reported experience of care and quality of care is unknown. Our primary aim was to assess the relationship between patient-reported experience of care and receipt of guideline-concordant colon cancer (CC) treatment. Methods: Fee-For-Service Medicare beneficiaries with resected stage I-III CC (2003-2013) were identified in the linked SEER registry and Consumer Assessment of Healthcare Providers and Systems patient experience survey (SEER-CAHPS) dataset. Patient-reported ratings were compared based on receipt of care consistent with recommended treatment guidelines [resection of ≥ 12 lymph nodes (LN) (stage I-III) and receipt of adjuvant chemotherapy (stage III)]. Linear regression was performed to compare mean patient experience scores by receipt of guideline concordant care, adjusting for patient and hospital factors. Results: 1010 patients with stage I-III CC were identified (mean age 76.7, SE 6.9). Of these, 58.4% of stage I (n = 192/329) and 73.4% of stage II (n = 298/406) patients underwent resection of ≥ 12 LN. Among stage III patients, 76.0% (n = 209/275) underwent resection of ≥ 12 LN and 52.4% (n = 144/275) received adjuvant chemotherapy. By multivariable analysis, patient-reported ratings of health care quality, personal and specialty physicians, customer service, physician communication, getting needed care, and getting care quickly were similar among patients who received guideline-concordant treatment compared to those who did not. However, mean ratings of overall health care quality [91.3 (SE 2.0) vs. 82.4 (SE 1.7), p = 0.0004] and getting needed care [92.8 (SE 2.4) vs. 86.8 (SE 2.0), p = 0.047] were higher among stage III patients who received guideline concordant care compared to those who did not. Conclusions: Patient-reported ratings of health care quality and ability to get needed care are associated with guideline concordant cancer care among elderly patients with stage III CC. Further investigation is needed to determine if patient-reported experience correlates with other clinical measures of quality of colorectal cancer care.

scholarly journals Health-Related Quality of Life in End-Stage Renal Disease Patients: How Often Should We Ask and What Do We Do with the Answer?

2016 ◽  
Vol 41 (1-3) ◽  
pp. 218-224 ◽  
Author(s):  
Shan Shan Chen ◽  
Saleem Al Mawed ◽  
Mark Unruh
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Dialysis Patients ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Stage Renal Disease ◽  
End Stage ◽  
Esrd Patients

Background: End-stage renal disease (ESRD) patients have poor health-related quality of life (HRQOL) comparing to general population and comparable HRQOL to patients with other major chronic diseases. Poor HRQOL is associated with shorter survival. There is a limited threshold to which dialysis dose and parameters management can improve HRQOL in ESRD patients. Numerous studies have sought to find interventions to improve HRQOL. This article is to review the symptoms associated with poor HRQOL and how frequent the quality of life (QOL) should be evaluated to improve the outcome. Summary: It is required by the Center for Medicare and Medicaid Services to evaluate HRQOL of dialysis patients annually. KDIGO recommends the symptoms to be assessed regularly and the treatment is redirected toward a patient-centered care model. Studies have shown that measuring patient-reported outcomes frequently, from 4 times a day to every 3-6 months, without intervention did not improve the HRQOL significantly. Appropriate intervention of the symptoms may improve the quality of life (QOL). Studies in oncology have also showed a similar result. The commonly used tools to evaluate the HRQOL in dialysis patients take up to 30 min for completion. Therefore, frequent assessment of all the symptoms can provide more burden than benefit to the patients. In addition to the annual HRQOL measurements, more frequent evaluation of targeted symptoms can be helpful. For appropriate intervention of the symptoms, effective communication between providers, as well as a multidisciplinary approach, is essential to improve HRQOL and outcomes in dialysis patients. Key Messages: Measurement of patient-reported outcomes may provide an opportunity to improve outcomes in ESRD. The frequent measurement of symptoms and QOL may be burdensome. Consider targeted measurement of symptoms to complement HRQOL measurement. Improved communication and the use of a multidisciplinary team provide mechanisms to improve HRQOL in ESRD.

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