Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

OBJECTIVE: To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. DESIGN: Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. SETTING AND SUBJECTS: A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. MAIN OUTCOME MEASURES: (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). RESULTS: ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. CONCLUSION AND IMPLICATIONS: Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

The role of social support in dialysis patients' feelings of autonomy and self-esteem: is support more beneficial for patients with specific illness perceptions?

The purpose of this study was to investigate whether effects of various types of support on dialysis patients' perceived autonomy and self-esteem depend on patients' perceived concerns and personal control regarding their illness. One hundred sixty-six patients completed written questionnaires. Main and interaction effects of support, concern, and personal control on autonomy and self-esteem were examined using linear regression analyses. General emotional support was positively related to autonomy in highly concerned patients (p < .05). Overprotection was negatively associated with autonomy (p < .05), and this association was stronger in patients with high perceived personal control (p < .01). A positive main effect of general emotional support (p < .05) and a negative main effect of overprotection (p < .01) on self-esteem were observed. The role of support in dialysis patients' autonomy appears to depend on patients' illness perceptions, whereas the role of support in patients' self-esteem does not. These findings suggest that dialysis patients' personal views about their illness can provide insight into whether patients could benefit from support, and that the provision of support should be tailored to patients' individual needs.

Illness perceptions and treatment perceptions of patients with chronic kidney disease: different phases, different perceptions?

OBJECTIVES: To examine the variability of illness and treatment perceptions - that have been found to be associated with chronic kidney disease (CKD) patients' outcomes (e.g., quality of life) - across the CKD trajectory, by investigating whether there are differences in perceptions in patients: (1) on varying treatments (pre-dialysis, haemodialysis, peritoneal dialysis), (2) with varying lengths of time on (dialysis) treatment, and (3) over time on dialysis, with an 8-month interval. DESIGN AND METHODS: Mixed cross-sectional and longitudinal design, using self-report questionnaires on illness and treatment perceptions; the study sample consisted of 105 pre-dialysis and 161 dialysis patients; of the 161 dialysis patients, 87 patients filled in the questionnaires again after an 8-month interval. Data were examined using multilevel (multivariate) repeated measurements regression analyses, controlled for background characteristics and repeated measures. RESULTS: Patients on haemodialysis and peritoneal dialysis believed more strongly that their treatment controls their illness (p < .05, p < .01, respectively) and perceived more illness consequences (p < .001, p < .05, respectively) than pre-dialysis patients. Haemodialysis patients perceived more treatment consequences than pre-dialysis (p < .001) and peritoneal dialysis patients (p < .01). The perception of illness understanding fluctuated between patients with varying lengths of time on dialysis (p < .05). Perceived treatment consequences were more negative in patients who were on dialysis for longer lengths of time (p < .01). Lastly, perceptions of illness and treatment varied within dialysis patients over an 8-month interval, with treatment control and personal control showing the lowest correlations. CONCLUSIONS: Findings suggest that illness and treatment perceptions vary across the CKD trajectory. This indicates that perceptions are amenable to influences and that interventions might potentially be helpful in influencing them in order to improve outcomes. STATEMENT OF CONTRIBUTION: What is already known on this subject? Dialysis patients' perceptions of illness understanding and illness symptoms vary over the first year on dialysis. Established haemodialysis patients' perceptions of illness understanding, emotional response and treatment control vary over a 2-year period. Certain illness perceptions as well as treatment perceptions vary as a function of treatment type in patients with CKD stage 5 (dialysis patients, patients with a kidney transplant). What does this study add? Patients' perceptions of illness understanding and treatment consequences vary between patients as a function of length of time on (haemo-, peritoneal-) dialysis, taking into account a wide range of time (0-10 years). Illness perceptions and treatment perceptions of patients on haemodialysis and peritoneal dialysis vary within patients over an 8-month interval, with perceptions of treatment control and personal control showing the highest variations. Perceptions of illness consequences, treatment consequences and treatment control vary as a function of type of treatment, taking into account pre-dialysis treatment (CKD stage 4) and dialysis (haemodialysis, peritoneal dialysis) treatment (CKD stage 5).

The development of and first experiences with a behavioural self-regulation intervention for end-stage renal disease patients and their partners.

This article describes the development of an intervention programme for patients with end-stage renal disease (ESRD) and their partners. The programme is based on theories of self-regulation, social learning, and self-determination aimed at maintaining and increasing patients' activities, including paid work, and sense of autonomy. The intervention was evaluated on its feasibility and first experiences among a group of 12 patients and partners. Results show that the intervention is feasible. The outcomes observed by the patients themselves are encouraging. The findings show that an approach in which cognitive, emotional, behavioural, and contextual aspects are integrated is promising. Areas of attention for developing and implementing interventions are discussed.

Pre-dialysis patients' perceived autonomy, self-esteem and labor participation: associations with illness perceptions and treatment perceptions. A cross-sectional study.

BACKGROUND: Compared to healthy people, patients with chronic kidney disease (CKD) participate less in paid jobs and social activities. The aim of the study was to examine a) the perceived autonomy, self-esteem and labor participation of patients in the pre-dialysis phase, b) pre-dialysis patients' illness perceptions and treatment perceptions, and c) the association of these perceptions with autonomy, self-esteem and labor participation. METHODS: Patients (N = 109) completed questionnaires at home. Data were analysed using bivariate and multivariate analyses. RESULTS: The results showed that the average autonomy levels were not very high, but the average level of self-esteem was rather high, and that drop out of the labor market already occurs during the pre-dialysis phase. Positive illness and treatment beliefs were associated with higher autonomy and self-esteem levels, but not with employment. Multiple regression analyses revealed that illness and treatment perceptions explained a substantial amount of variance in autonomy (17%) and self-esteem (26%). The perception of less treatment disruption was an important predictor. CONCLUSIONS: Patient education on possibilities to combine CKD and its treatment with activities, including paid work, might stimulate positive (realistic) beliefs and prevent or challenge negative beliefs. Interventions focusing on these aspects may assist patients to adjust to CKD, and ultimately prevent unnecessary drop out of the labor market.

Perceived autonomy and self-esteem in Dutch dialysis patients: the importance of illness and treatment perceptions.

Compared to healthy people, end-stage renal disease (ESRD) patients participate less in paid jobs and social activities. This study explored the perceived autonomy, state self-esteem and labour participation in ESRD patients on dialysis, and the role illness and treatment perceptions play in these concepts. Patients completed questionnaires at home or in the dialysis centre (N = 166). Data were analysed using bivariate and multivariate analyses. Labour participation among dialysis patients was low, the average autonomy levels were only moderate, and the average self-esteem level was rather high. On the whole, positive illness and treatment perceptions were associated with higher autonomy and self-esteem, but not with labour participation. Multiple regression analyses demonstrated that illness and treatment perceptions explained 18 to 27% of the variance in autonomy and self-esteem. Perceptions of personal control, less impact of the illness and treatment, and less concern were important predictors. Our results indicate that dialysis patients' beliefs about their illness and treatment play an important role in their perceived autonomy and self-esteem. Stimulating positive (realistic) beliefs and altering maladaptive beliefs might contribute to a greater sense of autonomy and self-esteem, and to social participation in general. Interventions focusing on these beliefs may assist patients to adjust to ESRD.