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.

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 Home dialysis : what are the barriers . A French nephrologist survey

2019 ◽  
Vol 2 (2) ◽  
pp. 47-53
Author(s):  
Magalie Geneviève ◽  
Stanislas Bataille ◽  
Julie Beaume ◽  
Aldjia Hocine ◽  
Louis De Laforcade ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Life Quality ◽  
Reporting Rate ◽  
Third Party ◽  
Regulatory Evolution ◽  
Home Hemodialysis ◽  
Home Dialysis ◽  
Lack Of Information ◽  
Geographical Regions

Home dialysis, which includes Peritoneal Dialysis and Home Hemodialysis, provides lots of profit to patients suffering of Chronic Kidney Disease, especially in terms of comfort, life quality and autonomy. However, its use is marginal in France, with an inhomogenous distributaion according to geographical regions. We conducted a French national survey of nephrologists to assess the barriers to the development of home dialysis. After analyzing the responses of the 230 participating nephrologists, the main obstacles to the development of the two techniques were identified and classified according to their reporting rate. The major obstacles that emerge from the survey are : the lack of information among the general public, a lack of acknowledgement of nurses specializing in these techniques, the limited number of structures that practice dialysis at home, and information difficulties among patient about dialysis techniques. The specific peritoneal dialysis-related difficulties reported are : difficulties in management of follow-up care and rehabilitation, the fear of insufficient purification and the difficulties related to the dialysis catheter. Concerning home hemodialysis, the barriers concern fear of autopunction and the need for a third party. This study helps to identify the representations of nephrologists on the major obstacles to the development of home dialysis to develop lines of thought for its promotion, both in terms of training, institutional acknowledgement, and the necessary regulatory evolution.

scholarly journals Evaluation of the Content Validity and Cross-Cultural Validity of the Study Participant Feedback Questionnaire (SPFQ)

2020 ◽  
Vol 54 (6) ◽  
pp. 1522-1533
Author(s):  
Alison Greene ◽  
Mary Elmer ◽  
Sean Ludlam ◽  
Kathyjo Shay ◽  
Sarah Bentley ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Content Validity ◽  
Study Participant ◽  
Cross Cultural ◽  
Cognitive Debriefing ◽  
Response Options ◽  
Cultural Validity ◽  
Concept Elicitation ◽  
Feedback Questionnaire ◽  
English Speaking

Abstract Objectives The Study Participant Feedback Questionnaire (SPFQ) is a patient-completed tool designed to assess patient experiences and satisfaction with aspects associated with being involved in a clinical trial. Originally developed in oncology and among English-speaking participants, the aim of the current study was to evaluate the content and cross-cultural validity of the SPFQ in other indications and non-English-speaking countries. Methods Semi-structured qualitative telephone interviews were conducted with 80 participants across eight non-English-speaking countries (in Europe, South America and Asia) who had received an investigational medicinal product as part of a clinical trial in the past three years. Interviews comprised concept elicitation to identify concepts of importance to participants’ trial experiences, and cognitive debriefing to assess understanding and perceived importance of SPFQ instructions, items and response options. Results Concept elicitation findings supported the content validity of the SPFQ. During cognitive debriefing, SPFQ instructions and the majority of items were well understood by participants. Participants generally considered the SPFQ items important to their clinical trial experience, albeit a handful of items assessed concepts that had not been experienced by trial participants or were redundant with other SPFQ items. The instructions, response options and recall period of the SPFQ were generally well understood. No country-level differences in understanding or importance were apparent. Conclusion Study findings provide evidence for the content and cross-cultural validity of the SPFQ and support implementation of the SPFQ as a means of obtaining participant feedback across global development programmes in a variety of indications.

Comparison of Psychological Adjustment to Continuous Ambulatory Peritoneal Dialysis and Home Hemodialysis

1981 ◽  
Vol 2 (2) ◽  
pp. 82-84 ◽  
Author(s):  
Howard J. Burton ◽  
Atara Kaplan De-Nour ◽  
John A. Conley ◽  
George A. Wells ◽  
Lokky Wais
Keyword(s):  
Peritoneal Dialysis ◽  
Psychological Adjustment ◽  
Continuous Ambulatory Peritoneal Dialysis ◽  
Sexual Satisfaction ◽  
Dialysis Patients ◽  
Home Hemodialysis ◽  
Home Dialysis ◽  
Household Members ◽  
Demographic Background

Two groups of home dialysis patients (40 on CAPD and 37 on home hemo dialysis) matched for length of time on dialysis, and for demographic background were studied and compared. The CAPD patients were significantly more satisfied with the support received from household members and from spouses, more satisfied with the relations with spouses, more understood by them and more understanding of their spouses. Sexual satisfaction declined in both groups. However, sexual satisfaction was slightly higher in the CAPD group and these patients experienced slightly less difficulty in adjusting to the decline; none of these differences were statistically significant.

AL Amyloidosis: Development Of a Conceptual Model and a Symptom Diary

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 5609-5609
Author(s):  
Emuella Flood ◽  
David Seldin ◽  
Ai-Min Hui ◽  
Deborah Berg ◽  
Huamao Mark Lin
Keyword(s):  
Conceptual Model ◽  
Research Funding ◽  
Al Amyloidosis ◽  
Cell Transplant ◽  
Cognitive Debriefing ◽  
Concept Elicitation ◽  
Wide Range ◽  
Patient Reported ◽  
Symptom Diary ◽  
Patients Perspective

Abstract Introduction Amyloidosis is a very rare blood disease characterized by the production of abnormal misfolded extracellular proteins that are deposited in body tissues or organs, leading to organ dysfunction. The most common form is systemic light chain (AL) amyloidosis. With no cure, treatment is directed at suppressing development of the abnormal protein, correcting or stabilizing organ function, and managing symptoms. Very little research has been done to assess patients’ symptoms in this disease and how they may be mitigated by available therapies.  The first objective of this study was to understand the symptoms and impact of the disease and treatment from the patients’ perspective. This insight was used to develop a comprehensive conceptual model of AL amyloidosis.  A second objective was to confirm the content of a draft amyloidosis symptom diary and provide recommendations to refine the measure. Methods Three data sources were included in this study: 1) A literature review using OvidSP (includes MEDLINE and Embase)using disease-specific and quality of life search terms; 2) An internet search to identify blogs (online diaries) written by patients about their disease/treatment experience; and 3) One-on-one telephone interviews with adult AL amyloidosis patients. Patients were recruited through physician referral and by the Amyloidosis Foundation. Eligible and interested patients were mailed an informed consent form and study questionnaires. Using a standardized guide, a trained interviewer conducted a concept elicitation interview to explore experiences of living with AL amyloidosis, after which the patient completed the symptom diary and underwent a cognitive debriefing interview.  The cognitive debriefing was designed to explore patient understanding of each instruction, item, and response option. Interview transcripts were coded to identify key concepts and themes emerging from the data using qualitative data analysis software, MaxQDA. Results Of 270 English language abstracts identified and reviewed, 10 articles appeared to include a patient-reported outcome (PRO) measure and were selected for full review. Nine patient blogs were identified and reviewed. Symptoms identified from the literature and from patient blogs informed the development of a draft symptom measure. Ten patients participated in the concept elicitation / cognitive debriefing interviews (mean age, 61 years, SD=8; 70% male). Eight reported experience with chemotherapy, 6 reported having received a stem cell transplant, and one had received a heart transplant. Patients identified symptoms as being related to both the disease and/or treatments.  Symptoms reported by at least 30% of the sample included fatigue (100%), weakness (100%), shortness of breath (90%), neuropathy (90%), edema (100%), dizziness/lightheadedness (80%), decreased/lack of appetite (60%), diarrhea (50%), constipation (40%), and difficulty sleeping (30%). Ninety-four percent of codes had been applied by the 7th interview, and only one new code (“heartburn”) was applied in the last interview, suggesting that key symptom concepts were identified with this sample. A conceptual model illustrating the various impacts of disease and treatment was developed.  Findings from cognitive debriefing interviews revealed that overall, patients found the diary to be straightforward and easy to complete. Most patients reported that the symptoms included in the measure adequately captured their experiences with AL amyloidosis. However, feedback suggested that certain symptoms such as swelling in the upper body, needed clarification. Conclusions A comprehensive conceptual model of symptoms and impacts of disease and treatment was developed and could be used to identify important outcomes from the patients’ perspective that should be assessed in clinical trials to capture treatment benefit.  AL amyloidosis is associated with a wide range of symptoms related to location of amyloid deposits, as well as side effects related to the treatment administered.  Despite this variability, a core set of symptoms emerged and a draft diary capturing symptoms likely to be applicable to most patients was developed. Based on the feedback from the cognitive debriefing interviews, patients found the diary to be straightforward and easy to complete.  Additional research and use in trials can provide further evidence for the validity and reliability of the diary. Disclosures: Seldin: Celgene: Research Funding; Prothena: Research Funding; Amyloidosis Foundation: Membership on an entity’s Board of Directors or advisory committees. Hui:Millennium: The Takeda Oncology Company: Employment. Berg:Millennium: The Takeda Oncology Company: Employment. Lin:Millennium: The Takeda Oncology Company: Employment.

scholarly journals Development, psychometric evaluation and cognitive debriefing of the rheumatoid arthritis symptom and impact questionnaire (RASIQ)

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Brandon Becker ◽  
Marguerite Bracher ◽  
Deven Chauhan ◽  
Regina Rendas-Baum ◽  
Xiaochen Lin ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Reliability And Validity ◽  
Psychometric Evaluation ◽  
Chronic Inflammatory Disease ◽  
Recall Period ◽  
Cognitive Debriefing ◽  
Two Phase ◽  
Concept Elicitation ◽  
Patient Reported ◽  
Arthritis Symptom

Abstract Background Rheumatoid arthritis (RA) is a chronic inflammatory disease often associated with persistent pain. There is a need for a patient-reported outcome measure (PROM) that is rooted in the patient experience and psychometrically validated. We describe the development of the Rheumatoid Arthritis Symptom and Impact Questionnaire (RASIQ), a novel PROM with potential to record key symptoms and impacts of RA with a 24-h recall period. Results A literature review identified RA concepts that patients considered most important to their disease experience, including pain, fatigue, joint swelling and stiffness. From this, an initial item pool (33 items; 27 related to symptoms, 6 related to impacts) was developed with a recall period of 24 h. Two rheumatologists evaluated each item’s relevance, and the second version of the RASIQ was refined (29 items; 21 related to symptoms, 8 related to impacts). Next, three rounds of cognitive debriefing interviews were conducted with patients with RA (n = 15 overall). The RASIQ was revised to remove items deemed irrelevant or redundant, leaving 16 items measuring symptoms (joint pain, energy/tiredness, joint stiffness) and impacts (rest, sleep). A parallel series of semi-structured concept elicitation interviews (n = 30) facilitated the design of a conceptual model of RA symptoms, impacts and treatment experiences. Post-hoc comparison of the model with RASIQ revealed that all items selected were among the most important and relevant symptoms and impacts for patients. A final round of cognitive debriefing interviews (n = 12) confirmed that the final 16-item RASIQ was relevant and easy to understand, with no further changes recommended. Psychometric evaluation using data from two Phase II RA clinical trials confirmed a 3-factor structure, as well as the reliability and validity of the scale scores, and the ability of RASIQ to detect changes in symptoms and impacts when administered at specific study timepoints, using a 24-h recall period. Conclusions RASIQ is a novel, 16-item PROM developed with substantial patient input. Results from concept elicitation, cognitive debriefing, and psychometric evaluation confirmed the validity of the instrument, which has the potential to measure symptoms and impacts through a 24-h recall period and complement existing disease activity instruments with longer recall periods.

scholarly journals Patient-Reported Disease Burden: In-Depth Interviews of Patients with CAD

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 29-30
Author(s):  
Jun Su ◽  
Katherine Kosa ◽  
Dana DiBenedetti
Keyword(s):  
Content Validity ◽  
Leisure Activities ◽  
Panel Member ◽  
The United States ◽  
Daily Activities ◽  
Outdoor Activities ◽  
Concept Elicitation ◽  
Cold Environments ◽  
Patient Reported ◽  
Social Leisure

Introduction Cold agglutinin disease (CAD) is a rare disorder (a prevalence of 16 cases per 1 million people), accounting for approximately 15%-25% of all autoimmune hemolytic anemias (Berentsen. Semin Hematol. 2018). Currently, there is no approved drug for the treatment of CAD. Debilitating fatigue that greatly affects quality of life is common among patients with CAD (Roth et al. Blood. 2019). The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) Scale has recently been used to quantify fatigue in patients with CAD (Roth et al. Blood. 2019). However, the appropriateness of FACIT-F in these patients has not been assessed. In-depth individual interviews of adults with CAD were conducted primarily to identify the symptoms and effects of CAD reported as important by patients and to better understand their experiences with CAD. The secondary objective was to obtain patient feedback regarding the relevance and importance of the items on the FACIT-F. Methods Participants were identified and recruited from a proprietary panel of patients with CAD. Of 1,250 panel members, approximately 600 members from the United States (US) were invited to participate in an in-depth interview. Systematic random sampling was used to select every nth panel member from each of 4 US regions to receive an email invitation. A semi-structured interview guide was used to ensure consistent systematic collection of data pertaining to study objectives, while maintaining a conversational tone and encouraging spontaneity of answers. Results Twenty-two members expressed interest in participating; of these, 18 could be reached for screening and 16 were eligible for interview. The sample was 100% White and non-Hispanic, 62.5% female, and had an average age of 67.8 years. Participants resided in the West (37.5%), Midwest and South (both 25%), and Northeast (12.5%). The date of CAD diagnosis averaged 6 years before the interview, and 68.8% of patients had received their diagnosis within the last 1.5 years. Seven (43.8%) patients reported that they were not taking any prescription or over-the-counter (OTC) medication for CAD, whereas 9 (56.3%) were taking prescribed or OTC folic acid for CAD (of these, 4 also took prescription strength vitamin B12). In this sample, no patient reported current use of other prescription medications for CAD. A few patients spontaneously reported previous treatments for CAD (eg, transfusions and rituximab or other injections). However, previous CAD treatment was not systematically collected for all subjects and is a limitation of the study. Concept-elicitation of symptoms The most frequently reported symptoms were fatigue/tiredness/lack of energy (93.8%), reaction to cold environments (93.8%), breathlessness (68.8%), and trouble thinking/concentrating (68.8%). When probed, 43.8% of patients reported sleep disturbances (Figure 1A). Concept-elicitation of effects Most participants (68.8%) reported lifestyle or behavioral changes to help treat CAD symptoms (eg, taking gloves/extra clothing to places that may be cold). Others reported giving up/limiting enjoyable or outdoor activities and making major changes (eg, discontinuing outdoor activities, restricting travel). Other CAD-related effects included impairment in daily activities, overall health/physical activities, and social/leisure activities/relationships (Figure 1B). For the evaluation of the FACIT-F in this CAD population, participants reported that FACIT-F instructions and items were clear and easy to understand, response options were distinct from each other, and they could recall their fatigue over the previous 7 days. They reported that FACIT-F measured one or more concepts personally important to them and important concepts were not missing. This provides support for the content validity of the FACIT-F in patients with CAD. Conclusions Patients with CAD experienced negative effects on daily activities, physical health/activities, social/ leisure activities/relationships, the ability to concentrate/recall, and mood/emotions mostly owing to fatigue/lack of energy and reactions to cold environments. Most patients required modifying their lifestyle/behavior to manage CAD symptoms. FACIT-F measured concepts important to patients with CAD, which supports its content validity and use in this patient population. Disclosures Su: Sanofi: Current Employment. Kosa:Sanofi: Other: RTI Health Solutions was contracted by Sanofi to conduct this work; RTI Health Solutions: Current Employment. DiBenedetti:Sanofi: Other: RTI Health Solutions was contracted by Sanofi to conduct this work; RTI Health Solutions: Current Employment, Other.

scholarly journals Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-Fatigue): Cognitive Debriefing in Patients with Chronic Lymphocytic Leukemia (CLL)

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4777-4777
Author(s):  
Helena Chung ◽  
Daniel Eek ◽  
Calvin Krogh ◽  
Matthew Blowfield ◽  
Oren Meyers ◽  
...  
Keyword(s):  
General Population ◽  
Content Validity ◽  
Cognitive Debriefing ◽  
Employment Equity ◽  
Response Options ◽  
Concept Elicitation ◽  
The Past ◽  
Fit For Purpose ◽  
Equity Ownership ◽  
The Impact

Introduction: The FACIT-Fatigue is a 13-item patient-reported outcome instrument (PRO) that was designed to assess fatigue-related symptoms and impacts on daily functioning. This study assessed the content validity of the FACIT-Fatigue in patients with CLL to help determine if it is fit-for-purpose in this population. Methods: Forty adults with first-line (1L) or relapsed or refractory (R/R) CLL took part in an interview study comprising concept elicitation and cognitive debriefing. All participants had experienced CLL-related symptoms (fatigue, weight loss, fever or night sweats) in the past week. For concept elicitation, interviewers used a standardized semi-structured interview guide with open-ended and prompted questions to explore patients' experiences of the signs, symptoms and impacts of CLL and its treatments. Patients were asked to provide a disturbance rating of these concepts on a 0-10 scale of severity. All interviewed patients completed the FACIT-Fatigue. Item scores can range from 0 ("not at all") to 4 ("very much"), and the total score from 0 to 52; lower scores indicate greater fatigue. The recall period for each item is the past 7 days. The general population mean score is 43 (Cella et al. 2002; Montan et al. 2018). During cognitive debriefing, the clarity of the FACIT-Fatigue items, their relevance to the patients, and the comprehensiveness of the response options were assessed. Interviews were carried out by telephone and lasted about 60-75 minutes. De-identified audio-recorded interviews were transcribed, coded and analyzed using qualitative data analysis software. Results: Median age of participants was 58 years (range: 28-73 years), and gender distribution was equal. During concept elicitation, fatigue was identified as the most prominent and impactful concept. It was the only concept mentioned by 100% of patients, and almost all (1L: 95%; R/R: 85%) mentioned it spontaneously without prompting. Fatigue had a high mean disturbance rating (1L: 7.1; R/R: 6.9). Seven fatigue-related sub-components were identified from the way that patients described their fatigue, covering symptoms (tiredness/need for sleep, lack of energy, weakness, cognitive fatigue) and impacts (decreased ability to maintain social/familial/professional role, decreased physical functioning, frustration). Mean (standard deviation) FACIT-Fatigue score was 28.9 (13.6) for patients with 1L CLL and 29.3 (11.5) for those with R/R CLL, indicating greater fatigue than the general population and providing further evidence that fatigue is a core component of CLL. The items that scored highest were: "I feel fatigued" (item 1; mean score: 2.4) and "I feel tired" (item 4; mean score: 2.4). The items that scored lowest were: "I am too tired to eat" (item 10; mean score: 0.4) and "I need help doing my usual activities" (item 11; mean score: 1.0). During cognitive debriefing, 100% of patients confirmed that the FACIT-Fatigue was reflective of their experiences with fatigue resulting from CLL. All patients found the response options provided by the FACIT-Fatigue to be sufficient. Patients confirmed that most of the FACIT-Fatigue terminology was clear. An exception was the item "I feel listless/washed out" (item 3), which was not consistently understood: most patients linked it to an absence of both physical and mental energy, but some interpreted it just as a lack of physical energy. Overall, patients considered the FACIT-Fatigue items to be relevant and distinct from each other, and found that the impact items captured both the mental and physical impacts of fatigue. One item, "I am too tired to eat", was not considered to be highly pertinent because, although respondents could imagine that some patients with CLL might be too tired to eat, they themselves could only recall being too tired to prepare a meal, not being too tired to eat. However, respondents felt that the item was still relevant and that it did not detract from the applicability or clarity of the FACIT-Fatigue. Conceptual relevance of the FACIT-Fatigue was supported by mapping of its items to the 7 fatigue-related sub-components identified during concept elicitation (Table). Conclusions: Results from concept elicitation and cognitive debriefing interviews demonstrated content validity of the FACIT-Fatigue in patients with CLL with 1L or R/R disease, thus providing evidence that it is fit-for-purpose in this population. Disclosures Chung: AstraZeneca: Employment, Equity Ownership. Eek:AstraZeneca: Employment, Equity Ownership. Eyre:Janssen: Honoraria; Gilead: Consultancy, Honoraria, Other: commercial research support; Abbvie: Honoraria; Roche: Honoraria.

scholarly journals Signature of a partnership agreement between ISPD and RDPLF for French translation of ISPD guidelines.

2021 ◽  
Vol 4 (3) ◽  
Author(s):  
Max Dratwa ◽  
Christian Verger
Keyword(s):  
Peritoneal Dialysis ◽  
English Language ◽  
Indigenous Australians ◽  
French Translation ◽  
Editorial Committee ◽  
Home Dialysis ◽  
Experience Of Care ◽  
French Speaking ◽  
Partnership Agreement ◽  
Assess Quality

We are pleased to announce with this new issue of the Bulletin de la Dialysis à Domicile (BDD), the bilingual journal of the RDPLF, the recent signing of a partnership agreement between the International Society of Peritoneal Dialysis (ISPD) and the RDPLF. The RDPLF now officially ensures the French translation of international open access recommendations published by the ISPD. The goal is to allow better distribution to French-speaking professionals who have difficulty accessing English-language medical literature.   In addition a webinar in French will be organized on an annual basis, in collaboration with the ISPD which will ensure logistics management. The dates will be communicated later. We warmly thank Professor Xueqing Yu, President of ISPD, and the members of the ISPD Board, for this agreement which will promote communication between health professionals who speak different languages. Max Dratwa, Christian Verger and the editorial committee.   Contents of this issue: - Assessment of Patient Experience of Care in Home Dialysis around the World: Enhancing the Patient’s Voice in Home Dialysis Care and Research - Narrative interviews to assess quality of life in Peritoneal Dialysis -Chylous peritonitis in peritoneal dialysis - Peritoneal dialysis in indigenous Australians - French translation of ISPD Recommendations for the evaluation of peritoneal membrane dysfunction in adults: classification, measurement, interpretation and rationale for intervention - Home dialysis and Covid-19 in French speaking countries (RDPLF data-base) - Literature review (in French only) by the Young Nephrologists Club      

scholarly journals Clinical Outcome of Home Hemodialysis in Patients with Previous Peritoneal Dialysis Exposure: Evaluation of the Integrated Home Dialysis Model

2015 ◽  
Vol 35 (3) ◽  
pp. 316-323 ◽  
Author(s):  
Annie-Claire Nadeau-Fredette ◽  
Joanne M. Bargman ◽  
Christopher T. Chan
Keyword(s):  
Peritoneal Dialysis ◽  
Renal Replacement Therapy ◽  
Replacement Therapy ◽  
Proportional Hazards Model ◽  
Cox Proportional Hazards Model ◽  
Rank Test ◽  
Home Hemodialysis ◽  
Home Dialysis ◽  
Technique Survival ◽  
Home Based

BackgroundHome dialysis is a cost-effective modality of renal replacement therapy associated with excellent outcomes. Peritoneal dialysis (PD) is the most common home-based modality, but technique failure remains a problem. Transfer from PD to home hemodialysis (HHD) allows the patient to continue with a home-based modality, but the outcomes of patients transitioning to HHD after PD are largely unknown.MethodsIn a retrospective cohort study, including all consecutive HHD patients between January 1996 and December 2011, we evaluated the outcomes of patients with previous PD exposure compared to those without. The primary outcome was the cumulative patient and technique survival. Secondary outcomes included time to first hospitalization and hospitalization rate. Data were compared using the log-rank test and a multivariable Cox proportional hazards model.ResultsAmong our cohort of 207 consecutive HHD patients, 35 (17%) had previous exposure to PD. Median renal replacement therapy (RRT) vintage (12.3 years, interquartile range (IQR) 8.5 – 18.9 vs 0.9 years, IQR 0.2 – 7.5, p < 0.001) and Charlson comorbidity index (CCI) (4, IQR 2 – 6 vs 3, IQR 2 – 4, p = 0.044) were higher among patients with PD exposure than those without. Despite the difference in vintage, cumulative patient and technique survival was similar in the two groups, in both unadjusted (log-rank p = 0.893) and Cox adjusted models (hazard ratio (HR) 1.15, 95% confidence interval (CI) 0.51 – 2.59) for patients with PD exposure compared to those without. The time to first hospitalization was shorter in patients with previous PD exposure compared to PD-naïve patients (log-rank p = 0.021). This association was preserved in the Cox proportional model (HR 1.65, 95% CI 1.08 – 2.54).ConclusionDespite a higher burden of comorbidity, patients with previous PD exposure had similar cumulative patient and technique survival on HHD compared to those without PD exposure. Whenever possible, HHD should be considered in PD patients in need of a new dialysis modality.

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