No abstract

Chronic kidney disease (CKD) is a complex medical condition that is associated with several comorbidities and requires comprehensive medical management. Given the chronic nature of the condition, its frequent association with psychosocial distress, and its very significant symptom burden, the subjective patient experience is key toward understanding the true impact of CKD on the patients’ life. Patient-reported outcome measures are important tools that can be used to support patient-centered care and patient engagement during the complex management of patients with CKD. The routine collection and use of patient-reported outcomes (PROs) in clinical practice may improve quality of care and outcomes, and may provide useful data to understand the disease from both an individual and a population perspective. Many tools used to measure PROs focus on assessing health-related quality of life, which is significantly impaired among patients with CKD. Health-related quality of life, in addition to being an important outcome itself, is associated with clinical outcomes such as health care use and mortality. In Part 1 of this review, we provide an overview of PROs and implications of their use in the context of CKD. In Part 2, we will review the selection of appropriate measures and the relevant domains of interest for patients with CKD.

eratinocyte carcinoma comprises basal and squamous cell carcinomas, and is the most common malignant dis ease in Canada and the United States. [1][2][3][4][5] Although kera tinocyte carcinoma has a low mortality rate, it is associated with substantial morbidity and impaired quality of life. 2,6,7 Among can cers, it also ranks fifth in health care costs in the US. 8 Epidemiological studies of keratinocyte carcinoma in North America are limited by its exclusion from most cancer regis tries. 9 Previous studies found that higher overall incidence of keratinocyte carcinoma is associated with male sex, 10-14 older age [15][16][17] and higher socioeconomic status. [18][19][20][21] However, differ ences in the incidence and mortality rates of keratinocyte car cinoma by sex in relation to age and socioeconomic status have not been well characterized.A better understanding of the epidemiology of keratinocyte carcinoma in Canada and differences by sex would inform public health initiatives, health services policy and patient education strategies. This is particularly relevant now, given the recent regu latory approval of systemic immunotherapies for locally advanced or metastatic squamous and basal cell carcinoma. [22][23][24][25] Our objective was to identify the populationbased incidence and mortality trends of keratinocyte carcinoma in Ontario, Canada over 2 decades and to evaluate sex differences. MethodsWe conducted a populationbased, retrospective observa tional study of health administrative data sets that were linked using unique encoded identifiers and analyzed at ICES. We reported the study according to the Reporting of Studies Con ducted Using Observational RoutinelyCollected Health Data (RECORD) checklist. 26 Research Incidence and mortality rates of keratinocyte carcinoma from 1998-2017: a population-based study of sex differences in Ontario, Canada

BackgroundCollecting patient reported outcome measures (PROMs) via computer-based electronic data capture system may improve feasibility and facilitate implementation in clinical care. We report our initial experience about the acceptability of touch-screen tablet computer-based, self-administered questionnaires among patients with chronic kidney disease (CKD), including stage 5 CKD treated with renal replacement therapies (RRT) (either dialysis or transplant).MethodsWe enrolled a convenience sample of patients with stage 4 and 5 CKD (including patients on dialysis or after kidney transplant) in a single-centre, cross-sectional pilot study. Participants completed validated questionnaires programmed on an electronic data capture system (DADOS, Techna Inc., Toronto) on tablet computers. The primary objective was to evaluate the acceptability and feasibility of using tablet-based electronic data capture in patients with CKD. Descriptive statistics, Fischer’s exact test and multivariable logistic regression models were used for data analysis.ResultsOne hundred and twenty one patients (55% male, mean age (± SD) of 58 (±14) years, 49% Caucasian) participated in the study. Ninety-two percent of the respondents indicated that the computer tablet was acceptable and 79% of the participants required no or minimal help for completing the questionnaires. Acceptance of tablets was lower among patients 70 years or older (75% vs. 95%; p = 0.011) and with little previous computer experience (81% vs. 96%; p = 0.05). Furthermore, a greater level of assistance was more frequently required by patients who were older (45% vs. 15%; p = 0.009), had lower level of education (33% vs. 14%; p = 0.027), low health literacy (79% vs. 12%; p = 0.027), and little previous experience with computers (52% vs. 10%; p = 0.027).ConclusionsTablet computer-based electronic data capture to administer PROMs was acceptable and feasible for most respondents and could therefore be used to systematically assess PROMs among patients with CKD. Special consideration should focus on elderly patients with little previous computer experience, since they may require more assistance with completion.Electronic supplementary materialThe online version of this article (10.1186/s12882-017-0771-7) contains supplementary material, which is available to authorized users.

Background and Objectives A preference-based health utility score (PROPr) can be calculated using Patient-Reported Outcomes Measurement Information System domain scores. We assessed the construct validity of PROPr among patients treated with kidney replacement therapy (hemodialysis or kidney transplant). Design, setting, participants and measurements Secondary analysis of data collected in multicenter, cross-sectional studies of adults treated with kidney replacement therapy, recruited between April 2016 to March 2020 in Toronto, Canada. All participants provided informed consent. The outcome was PROPr score. Co-administered outcome variables included the Short form 6-domain (SF-6D) and EuroQol 5-domain 5-level (EQ-5D-5L) scores. Socioeconomic and clinical variables included age, sex, diabetes, estimated Glomerular Filtration Rate (eGFR), serum albumin, hemoglobin, kidney replacement therapy and Charlson-comorbidity index. Construct validity was assessed through correlations between PROPr and SF-6D or EQ-5D-5L and associations between PROPr and other exposure variables. Health condition impact estimates (coefficients for health conditions compared to a referent category: e.g. dialysis vs kidney transplant) were calculated using multivariable linear regression. Results Mean (SD) age of the 524 participants was 57 (17) years, 58% were male and 45% white. Median (IQR) score was 0.39 (0.24-0.58) for PROPr, 0.69 (0.58-0.86) for SF-6D and 0.85 (0.70-0.91) for EQ-5D-5L. Large correlations were observed between PROPr vs SF-6D (0.79, 95%CI: 0.76 - 0.82) and EQ-5D-5L (0.71, 95%CI: 0.66 - 0.75). Both PROPr and the other utility indices demonstrated health condition impact in the expected direction. For example, the estimate for PROPr was -0.17 (95%CI: -0.13, -0.21) for dialysis (versus kidney transplant), -0.05 (95%CI: -0.11, 0.01, P=0.08) for kidney transplant recipients with eGFR <45 vs ≥45 ml/min/1.73m2 and -0.28 (95%CI: -0.22, -0.33) for moderate/severe versus no/mild depressive symptoms. Conclusions Our results support the validity of PROPr among patients treated with kidney replacement therapy.

Background Due to the increasing public acceptance of substance use, it is important to understand the association between substance use and access to kidney transplant and its outcomes. Here, we assess the sociodemographic predictors of substance use and the association between substance use and KT access. Methods Predictors of substance use were examined using a multivariable‐adjusted multinomial logistic regression. The association between current substance use (tobacco and drug) and time from referral to listing or receipt of a KT was examined using Cox proportional hazards models. Results Of 2346 patients, the prevalence of current substance use was 17%. Predictors of current tobacco use were younger age, male sex, Caucasian ethnicity, being unemployed, and unmarried. Predictors of current drug use were younger age, male sex, Caucasian ethnicity, a history of non‐adherence, and a history of mental health disorder. Patients with tobacco use had a decreased likelihood of being cleared for KT (hazard ratio [HR]:0.83[0.70, 0.99]) and receiving a KT (HR:0.80 [0.66, 0.96]). No association was seen in this sample for patients with drug use (HR:0.88 [0.69, 1.11] for being cleared for KT and 0.88 [0.69, 1.14] for KT, respectively). Conclusions Tobacco use was associated with a decreased likelihood of access to KT whereas there was no statistically significant difference in access to KT between patients with or without drug use.

Summary We assessed the validity of the Edmonton Symptom Assessment System (ESAS‐r) in kidney transplant recipients (KTR). A cross‐sectional sample of 252 KTR was recruited. Individual ESAS‐r symptom scores and symptom domain scores were evaluated. Internal consistency, convergent validity, and construct validity were assessed with Cronbach’s α, Spearman’s rank correlations, and a priori‐defined risk group comparisons. Mean (SD) age was 51 (16), 58% were male, and 58% Caucasian. ESAS‐r Physical, Emotional, and Global Symptom Scores demonstrated good internal consistency (α > 0.8 for all). ESAS‐r Physical and Global Symptom Scores strongly correlated with PHQ‐9 scores (0.72, 95% CI: 0.64–0.78 and 0.74, 95% CI: 0.67–0.80). For a priori‐defined risk groups, individual ESAS‐r symptom score differed between groups with lower versus higher eGFR [pain: 1 (0–3) vs. 0 (0–2), delta = 0.18; tiredness: 3 (1–5) vs. 1.5 (0–4), delta = 0.21] and lower versus higher hemoglobin [tiredness: 3 (1–6) vs. 2 (0–4), delta = 0.27]. ESAS‐r Global and Physical Symptom Scores differed between groups with lower versus higher hemoglobin [13 (6–29) vs. 6.5 (0–18.5), delta = 0.3, and 9 (2–19) vs. 4 (0–13), delta = 0.24] and lower versus higher eGFR [11 (4–20) vs. 6.5 (2–13), delta = 0.21, and 7 (2–16) vs. 3 (0–9), delta = 0.26]. These data support reliability and construct validity of ESAS‐r in KTR. Future studies should explore its clinical utility for symptom assessment among KTR.

No abstract