Social relationships and their impact on health-related outcomes in peritoneal versus haemodialysis patients: a prospective cohort study.

Background: Social relationships are important determinants of health-related outcomes for patients with chronic conditions. However, the effects of social networks and social support on health outcomes of dialysis patients in different treatment modalities have been under studied. Methods: We surveyed peritoneal dialysis (PD) and haemodialysis (HD) patients in the Choice of Renal Replacement Therapy project about their social relationships and health-care outcomes at baseline and 1-year follow-up. Two propensity score-matched groups (n = 353; HD = 200, PD = 153) with similar age, comorbidity level, education and employment status were compared. We used an ego-centred Network Generator to assess quantitative and qualitative aspects of social networks and the Berlin Social Support Scales to evaluate dimensions of social support, and analysed the effects of the social variables on anxiety, depression, autonomy preferences, and physical and psychological quality of life. Results: Over time, the non-family networks (e.g. friends) of both groups decreased (P = 0.04) and the absolute number of types of relationships increased (P = 0.01). The family-network size, quality of relationships and social support remained stable. Larger social networks were associated with higher participation-seeking preferences (B = 1.39, P = 0.002) and lower anxiety (B = -0.11, P = 0.03). Closer and more satisfying relationships were associated with better psychological well-being (B = 3.41, P = 0.003). PD patients had larger networks, more types of relationships and received more social support than HD patients (P ≤ 0.05). Conclusions: These differences may reflect the degree of autonomy and self-care associated with the different treatment modalities. In practice, our findings suggest that the early identification and inclusion of persons providing social support for patients may have a positive effect on different aspects of their care and quality of life.

The Choice of Renal Replacement Therapy (CORETH) project: dialysis patients' psychosocial characteristics and treatment satisfaction.

Background: Until today, research has underestimated the role of psychosocial conditions as contributing factors to dialysis modality choice. The novelty within the Choice of Renal Replacement Therapy (CORETH) project (German Clinical Trials Register #DRKS00006350) is its focus on the multivariate associations between these aspects and their consecutive significance regarding treatment satisfaction (TS) in peritoneal dialysis (PD) versus haemodialysis (HD) patients. In this article, we present the baseline results of a multicentre study, which is supported by a grant from the German Ministry for Education and Research. Methods: Six to 24 months after initiation of dialysis, 780 patients from 55 dialysis centres all over Germany were surveyed. The questionnaire addressed psychosocial, physical, socio-demographic and shared decision-making (SDM) aspects. Furthermore, cognitive functioning was tested. After indexing the measures, two propensity score-matched groups (n = 482) were compared in a first step, after having chosen PD or HD. In a second step, a moderated multiple regression (n = 445) was conducted to initially investigate the multivariate impact of patient characteristics on TS. Results: In comparison with HD patients, PD patients were more satisfied with their treatment (P < 0.001), had a more autonomy-seeking personality (P = 0.04), had better cognitive functioning (P = 0.001), indicated more satisfying SDM (P < 0.001) and had a larger living space (P < 0.001). All patients were more satisfied when they had a good psychological state and received SDM. Especially in HD patients, TS was higher when the patient had a less autonomous personality, lower cognitive functioning, more social support, a poorer physical state and poorer socio-demographic conditions (R2 = 0.26). Conclusions: Psychosocial characteristics play a major role in TS in dialysis patients. Within a multivariate approach, these factors are even more important than physical or environment-related factors. In practice, focusing on SDM and screening patient characteristics at an early stage can foster patients' TS. Changes will be examined in a 1-year follow-up.

Cognitive Testing in Patients with CKD: The Problem of Missing Cases.

BACKGROUND AND OBJECTIVES: Cognitive testing is only valid in individuals with sufficient visual and motor skills and motivation to participate. Patients on dialysis usually suffer from limitations, such as impaired vision, motor difficulties, and depression. Hence, it is doubtful that the true value of cognitive functioning can be measured without bias. Consequently, many patients are excluded from cognitive testing. We focused on reasons for exclusion and analyzed characteristics of nontestable patients. DESIGN, SETTING, PARTICIPANTS & MEASUREMENTS: Within the Choice of Renal Replacement Therapy Project (baseline survey: May 2014 to May 2015), n=767 patients on peritoneal dialysis (n=240) or hemodialysis (n=527) were tested with the Trail Making Test-B and the German d2-Revision Test and completed the Kidney Disease Quality of Life Short Form cognition subscale. We divided the sample into patients with missing cognitive testing data and patients with full cognitive testing data, analyzed reasons for nonfeasibility, and compared subsamples with regard to psychosocial and physical metrics. The exclusion categories were linked to patient characteristics potentially associated with missing data (age, comorbidity, depression, and education level) by calculation of λ-coefficient. RESULTS: The subsamples consisted of n=366 (48%) patients with missing data (peritoneal dialysis =62, hemodialysis =304) and n=401 patients with full cognitive testing data (peritoneal dialysis =178, hemodialysis =223). Patients were excluded due to visual impairment (49%), lack of motivation (31%), and motor impairment (13%). The remaining 8% did not follow instructions, suffered from medical incidents, or had language difficulties. Compared with patients with full cognitive testing data, they were more likely to have depression; be treated with hemodialysis; be older, nonworking, or more comorbid; and experience poorer shared decision making. Reasons for exclusion were not related to levels of age, comorbidity score, depression score, or education level. CONCLUSIONS: We excluded almost one half of eligible patients from cognitive testing due to visual, motivational, or motor difficulties. Our findings are consistent with exclusion categories reported from the literature. We should be aware that, because of disease-related limitations, conclusions about cognitive functioning in the CKD population may be biased. In the future, nonvisual and nonverbal cognitive testing can be a valuable resource.

Shared decision-making in chronic kidney disease: A retrospection of recently initiated dialysis patients in Germany.

OBJECTIVE: To compare differences in shared decision-making (SDM) and treatment satisfaction (TS) between haemodialysis (HD) and peritoneal dialysis (PD) patients. METHODS: 6-24 months after initiation of dialysis, we surveyed 780 patients from throughout Germany (CORETH-project) regarding SDM, the reason for modality choice and TS. Data were compared between two age-, comorbidity-, education-, and employment status-matched groups (n=482). RESULTS: PD patients rated all aspects of SDM more positively than did HD patients (total score: MPD=84.6, SD=24.1 vs. MHD=61.9, SD=37.3; p≤0.0001). The highest difference occurred for the item "announcement of a necessary decision" (delta=1.3 points on a 6-point Likert-scale). PD patients indicated their desire for independence as a motivator for choosing PD (65%), whereas HD patients were subject to medical decisions (23%) or wanted to rely on medical support (20%). We found positive correlations between SDM and TS (0.16≤r≤0.48; p≤0.0001). CONCLUSION: Our findings increase awareness of a participatory nephrological counseling-culture and imply that SDM can pave the way for quality of life and treatment success for dialysis patients. PRACTICE IMPLICATIONS: Practitioners can facilitate SDM by screening patient preferences at an early stage, being aware of biases in consultation, using easy terminology and encouraging passive patients to participate in the choice.

Validating a Patient-Reported Comorbidity Measure with Respect to Quality of Life in End-Stage Renal Disease.

PURPOSE: Medical record-derived comorbidity measures such as the Charlson Comorbidity Index (CCI) do not predict functional limitations or quality of life (QoL) in the chronically ill. Although these shortcomings are known since the 1980s, they have been largely ignored by the international literature. Recently, QoL has received growing interest as an end-point of interventional trials in Nephrology. The aim of this study is to compare a patient-reported comorbidity measure and the CCI with respect to its validity regarding QoL. METHODS: The German Self-Administered Comorbidity Questionnaire (SCQ-G) was completed by 780 adult end-stage renal disease-patients recruited from 55 dialysis units throughout Germany. Acceptance was evaluated via response rates. Content validity was examined by comparing the typical comorbidity pattern in dialysis patients and the pattern retrieved from our data. Convergent validity was assessed via kappa statistics. Data was compared to the CCI. Linear associations with QoL were examined (criterion validity). RESULTS: The SCQ-G was very well accepted by dialysis patients of all ages (response rate: 99%). Content validity can be interpreted as high (corresponding comorbidity items: 73.7%). Convergent validity was rather weak (.27≤ρ≤.29) but increased when comparing only concordant items (.39≤ρ≤.43). With respect to criterion validity, the SCQ-G performed better than the CCI regarding the correlation with QoL (e.g., SF-12-physical: SCQ-G total score: ρ = -.49 vs. CCI: ρ = -.36). CONCLUSIONS: The patient-reported measure proved to be more valid than the external assessment when aiming at insights on QoL. Due to the inclusion of subjective limitations, the SCQ-G is more substantial with respect to patient-centered outcomes and might be used as additional measure in clinical trials.

The Choice of Renal Replacement Therapy (CORETH) project: study design and methods.

BACKGROUND: To date, research has neglected the patient's psychosocial and cognitive conditions as contributing factors to dialysis modality decision-making. Hence, the Choice of Renal Replacement Therapy (CORETH) study aims to examine these conditions with regard to their impact on the choice. Here we describe the design of the multicentre study, which is supported by a grant from the German Ministry for Education and Research. METHODS: Two groups of patients will be compared after having chosen peritoneal or haemodialysis as permanent treatment. About 1200 participants from 50 dialysis centres all over Germany will be questioned. The questionnaire addresses social, psychological and shared decision-making aspects. Furthermore, cognitive functioning will be tested. For an economic evaluation direct and indirect costs of treatment will be calculated. Changes will be examined through a one-year follow-up. CONCLUSIONS: The results will enlighten the treatment choice under the German healthcare system. They will provide further insight regarding the discussion on patient autonomy. From the patients' perspective, the results will help to strengthen their participation in the individual process of health-related decision-making.