Patient access to complex chronic disease records on the Internet.

BACKGROUND: Access to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK. METHODS: Content and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrollment and usage were extracted from the webserver. RESULTS: By mid 2011 over 17,000 patients from 47 of the 75 renal units in the UK had registered. Users had a wide age range (<10 to >90 yrs) but were younger and had more years of education than non-users. They were enthusiastic about the concept, found it easy to use, and 80% felt it gave them a better understanding of their disease. The most common reason for not enrolling was being unaware of the system. A minority of patients had security concerns, and these were reduced after enrolling. Staff responses were also strongly positive. They reported that it aided patient concordance and disease management, and increased the quality of consultations with a neutral effect on consultation length. Neither patient nor staff responses suggested that RPV led to an overall increase in patient anxiety or to an increased burden on renal units beyond the time required to enroll each patient. CONCLUSIONS: Patient Internet access to secondary care records concerning a complex chronic disease is feasible and popular, providing an increased sense of empowerment and understanding, with no serious identified negative consequences. Security concerns were present but rarely prevented participation. These are powerful reasons to make this type of access more widely available.

Use of 12x/month haemoglobin monitoring with a computer algorithm reduces haemoglobin variability.

BACKGROUND: Haemoglobin variability may be associated with increased death. Frequent haemoglobin monitoring may allow earlier detection of trends in haemoglobin slopes, alerting staff to intercurrent events. The more frequent haemoglobin values may provide early evidence of response to erythropoietin (EPO) doses, and allow more appropriate anaemia management. Our objective is to assess whether frequent haemoglobin monitoring data (12x/month) using a computer algorithm (AMIE, Leeds, UK) will reduce haemoglobin variability compared with 1x/month monitoring. METHODS: We performed an observational case-control study of 44 unselected patients, comprising one dialysis facility measuring Crit-Line haemoglobin, lab haemoglobin, standard deviation of residuals as surrogate of haemoglobin variability and EPO dosing. RESULTS: Haemoglobin variability and 'percent in target haemoglobin range' significantly improved with 12x/month haemoglobin results using a computer algorithm. There was also a non-significant trend toward for lower EPO doses. CONCLUSION: Use of a computer algorithm to analyse 12x/month haemoglobin values provides early evidence of haemoglobin trends and allows more appropriate anaemia management, with decreased haemoglobin variability, lower EPO doses and more patients achieving target haemoglobin.

Development and exploitation of a clinical decision support system for the management of renal anaemia.

The management of renal disease and its comorbidities lends itself to the use of computer-assisted decision support systems (CDSS); however, several issues with regard to computer-based treatment algorithms remain unresolved. This review examines the development and application of a clinical decision support system for the management of renal anaemia. Studies illustrate the dependence of outcome on prespecified haemoglobin (Hb) intervention values (thresholds) and the use of a computer program containing treatment algorithms to manage Epoetin doses and iron supplements. Early experimental studies and randomized, controlled studies are discussed that examine the use of clinical measures of haemodialysis (HD) and peritoneal dialysis (PD), including Hb, serum ferritin and red cell hypochromia or transferrin saturation. Broad flexibility of erythropoietic agent, dosing, route of administration and frequency has been built into computer programs written for clinical and experimental application. While further studies with the system are anticipated, predictability and sustainability of Hb outcomes and a capacity to manage large patient groups have been demonstrated and wider application appears promising.

Structured conversion from thrice weekly to weekly erythropoietic regimens using a computerized decision-support system: a randomized clinical study.

In view of the recent interest in weekly erythropoietic regimens and the lack of studies directly comparing the available agents, the clinical effectiveness of darbepoetin-alpha (DA) and epoetin-beta (EB), when administered via the subcutaneous route on a weekly basis, after conversion from thrice-weekly subcutaneous EB, was studied. In this 9-mo, single-center, randomized study of an unselected hemodialysis population, anemia was managed with a computerized decision-support system. Per-protocol analysis of the 81 patients in each arm who completed the study showed similar hemoglobin outcomes between treatment arms, both at randomization and at the end of the study. After conversion from thrice-weekly EB to DA (at a ratio of 200 IU:1 microg, at which products are cost-neutral in the European Union), a significant fall in dose from a mean of 0.59 microg/kg per wk after randomization to 0.46 microg/kg per wk in the last month (P = 0.002) was observed; in the comparator arm, the reduction in frequency of administration of EB was associated with a significant dose increase from a mean of 107.5 to 133.2 IU/kg per wk (P = 0.002) during the same period. At hemoglobin stability, mean EB dose was found to be 44% higher than DA dose (when multiplied by 200). Similar significant dose differences were apparent in a modified intention-to-treat analysis. The study demonstrated that, under a decision-support system, both products were capable of adequately maintaining hemoglobin outcome when administered on a weekly basis but with significant dose differences at 9 mo.

Patient-specific prompts in the cholesterol management of renal transplant outpatients: results and analysis of underperformance.

BACKGROUND: Renal transplant recipients have an increased risk of cardiovascular disease compared with age- and gender-matched controls. It is recommended that "high-risk" patients are treated with hydroxymethylglutaryl CoA reductase inhibitors to reduce cholesterol levels. METHOD: We evaluated the effect of a computer-based decision support algorithm in delivering patient-specific prompts to manage cholesterol in renal transplant outpatients. Data were analyzed retrospectively for a 2-year period with attention to changes in cholesterol levels, prescribing patterns of statins, and causes of underperformance. RESULTS: At baseline, 36.7% of patients achieved a total serum cholesterol level less than 5.0 mmol/L, compared with 67.2% at 2 years, with mean values of 5.6+/-0.1 mmol/L and 4.8+/-0.1 mmol/L (P<0.0001). At baseline, 24% of the patients were receiving statin therapy, increasing to 61% at 2 years. There were no significant changes in creatinine phosphokinase, trough cyclosporine levels, or total cyclosporine dose. Alkaline phosphatase levels increased (166.1+/-3.6-184.6+/-6.1 mmol/L, P=0.009), but remained within the normal clinical range; creatinine clearance increased (58.6+/-1.0-61.0+/-1.2 mL/min, P=0.05). For patients followed concurrently in two units without the algorithm, serum cholesterol measurements decreased from 5.57 mmol/L and 5.34 mmol/L to 5.31 mmol/L and 5.27 mmol/L, respectively (P=0.05), both higher than that achieved contemporaneously at St. James's. Underperformance depended less on medical noncompliance than with systematic features of the methodology and patient preference/collaboration with treatment. CONCLUSIONS: The introduction of the algorithm coincided with a significant reduction in cholesterol levels, an increase in the number of patients receiving appropriate therapy, and no serious adverse effects. Our results illustrate the positive effect of computer-generated prompts and decision support software.

A randomized, controlled study of the consequences of hemodialysis membrane composition on erythropoietic response.

BACKGROUND: Membrane biocompatibility has long been thought to be relevant to hemodialysis outcomes and, possibly, renal anemia. METHODS: We performed a randomized, controlled, single-center study comparing the consequences on renal anemia of 2 dialyzers of equivalent performance, but different composition, during 7 months. Two hundred eleven patients of an unselected dialysis population of 235 patients gave informed consent to undergo random assignment to either group A (SF170E; modified cellulose triacetate/midflux membrane; Nipro, Osaka, Japan) or group B (HF80LS; polysulfone/high-flux membrane; Fresenius, Bad Homburg, Germany). Anemia management was identical in both treatment groups and followed strict clinical protocols managed by computer algorithms. Dialysis adequacy, hemoglobin (Hb) level, ferritin level, percentage of red blood cell hypochromicity, C-reactive protein (CRP) level, and intravenous iron and epoetin doses were monitored monthly. RESULTS: One hundred seventy-seven patients completed the 7-month study. Equilibrated Kt/V increased in both groups. Hb outcome improved overall, but did not differ between the 2 study groups. Epoetin dose was not significantly different after 7 months compared with baseline in either group. Hb level, epoetin dose, iron status, CRP level, dialysis Kt/V, and residual renal function did not differ between the 2 groups. A slight but significant negative correlation was identified between dialysis Kt/V and Hb level in the population as a whole (Spearman's correlation, -0.16; P = 0.04). CONCLUSION: No significant epoetin-sparing effect was identified through the use of the high-flux polysulfone HF80LS membrane over the modified cellulose triacetate SF170E membrane. Although not a primary outcome for this study, there was a suggestion of benefit of improved Hb level, without increased need for epoetin, through increasing delivered dialysis dose.