The Renal Treatment Satisfaction Questionnaire (RTSQ): a measure of satisfaction with treatment for chronic kidney failure.

BACKGROUND: Quality and effectiveness of care can be enhanced through the use of condition-specific measures of satisfaction with treatment. The aim of the present study was to design and develop a measure of satisfaction with treatment for patients with chronic kidney failure (CKF) for use in routine clinical care and clinical trials. The Renal Treatment Satisfaction Questionnaire (RTSQ) was designed to be suitable for people using any of the various treatment modalities for CKF. Items measure satisfaction with aspects of treatment, including convenience, flexibility, freedom, and satisfaction to continue with present form of treatment.

METHODS: A 12-item RTSQ was investigated at a UK hospital-based renal unit, using data from 140 outpatients undergoing renal replacement therapy (hemodialysis, n = 35; continuous ambulatory peritoneal dialysis, n = 57; transplantation, n = 46).

RESULTS: An 11-item scale was developed from the original 12-item version, with a single factor accounting for 59% of the variance and item loadings greater than 0.58. Scale reliability was excellent (alpha = 0.93) in the full sample and proved robust to analysis in separate treatment subgroups. As expected, RTSQ scores differed significantly ( P < 0.0001) between the transplantation and other treatment groups. Those who had received a transplant expressed greater overall satisfaction, with specific advantages of transplantation shown by all individual items, including convenience, time, lifestyle, freedom, and satisfaction to continue current treatment.

CONCLUSION: The RTSQ provides a brief reliable measure of satisfaction with treatment for patients with CKF that is suitable for use in routine clinical care and clinical trials.

Evidence-based chronic heart-failure management programs : myth or reality?

Background Chronic heart-failure management programmes (CHF-MPs) have become part of standard care for patients with chronic heart failure (CHF). Objective To investigate whether programmes had applied evidence-based expert clinical guidelines to optimise patient outcomes. Design A prospective cross-sectional survey was used to conduct a national audit. Setting Community setting of CHF-MPs for patients postdischarge. Sample All CHF-MPs operating during 2005–2006 (n=55). Also 10–50 consecutive patients from 48 programmes were recruited (n=1157). Main outcome measures (1) Characteristics and interventions used within each CHF-MP; and (2) characteristics of patients enrolled into these programmes. Results Overall, there was a disproportionate distribution of CHF-MPs across Australia. Only 6.3% of hospitals nationally provided a CHF-MP. A total of 8000 postdischarge CHF patients (median: 126; IQR: 26–260) were managed via CHF-MPs, representing only 20% of the potential national case load. Significantly, 16% of the caseload comprised patients in functional New York Heart Association Class I with no evidence of these patients having had previous echocardiography to confirm a diagnosis of CHF. Heterogeneity of CHF-MPs in applied models of care was evident, with 70% of CHF-MPs offering a hybrid model (a combination of heart-failure outpatient clinics and home visits), 20% conducting home visits and 16% conducting an extended rehabilitation model of care. Less than half (44%) allowed heart-failure nurses to titrate medications. The main medications that were titrated in these programmes were diuretics (n=23, 96%), β-blockers (n=17, 71%), ACE inhibitors (ACEIs) (n=14, 58%) and spironolactone (n=9, 38%). Conclusion CHF-MPs are being implemented rapidly throughout Australia. However, many of these programmes do not adhere to expert clinical guidelines for the management of patients with CHF. This poor translation of evidence into practice highlights the inconsistency and questions the quality of health-related outcomes for these patients.

Measuring self-care in chronic heart failure : a review of the psychometric properties of clinical instruments

Background : Improved self-care skills and behaviors are an important outcome of patient education and counseling. Both researchers and health professionals need to utilize instruments that are reliable and valid at measuring this outcome to advance our understanding as to the efficacy of clinical practice directed toward improving self-care.

Objective : The aim of this study was to identify instruments that measure chronic heart failure (CHF) self-care and demonstrate their psychometric properties.

Methods : A search of Medline, Cumulative Index to Nursing and Allied Health Literature, Medline, PsycArticles, Psychology and Behavioral Sciences Collection, and PsycINFO databases elucidated studies published between January 1980 and February 2009 that measure CHF self-care. The clinical instruments selected were disease-specific measures of CHF self-care behaviors that are promoted in best practice guidelines. Only instruments that reported estimates of reliability and validity were included in this review. Psychometric properties of the instruments were evaluated according to practice guidelines.

Results : The literature search identified 14 instruments published in peer-reviewed journals that measured constructs that predict or correlate to self-care rather than self-care itself. Only 2 disease-specific measures of self-care were identified (Self-care Heart Failure Index [SCHFI] and European Heart Failure Self-care Behavior Scale [EHFScBS]) that have undergone rigorous psychometric testing in CHF populations. Five aspects of validity had been demonstrated with EHFScBS, and 6 aspects of validity had been demonstrated with SCHFI. Two of 3 aspects of reliability have been demonstrated in both instruments.

Conclusion : Only 2 reliable and valid tools have been developed to specifically measure CHF self-care. Further use of these instruments in the research arena may reduce gaps in our understanding of CHF self-care and further shape clinical practice directed at improving it.

Inequitable provision of optimal services for patients with chronic heart failure : a national geo-mapping study

Objective : To compare the location and accessibility of current Australian chronic heart failure (CHF) management programs and general practice services with the probable distribution of the population with CHF. Design and setting : Data on the prevalence and distribution of the CHF population throughout Australia, and the locations of CHF management programs and general practice services from 1 January 2004 to 31 December 2005 were analysed using geographic information systems (GIS) technology. Outcome measures : Distance of populations with CHF to CHF management programs and general practice services. Results : The highest prevalence of CHF (20.3–79.8 per 1000 population) occurred in areas with high concentrations of people over 65 years of age and in areas with higher proportions of Indigenous people. Five thousand CHF patients (8%) discharged from hospital in 2004–2005 were managed in one of the 62 identified CHF management programs. There were no CHF management programs in the Northern Territory or Tasmania. Only four CHF management programs were located outside major cities, with a total case load of 80 patients (0.7%). The mean distance from any Australian population centre to the nearest CHF management program was 332 km (median, 163 km; range, 0.15–3246 km). In rural areas, where the burden of CHF management falls upon general practitioners, the mean distance to general practice services was 37 km (median, 20 km; range, 0–656 km). Conclusion : There is an inequity in the provision of CHF management programs to rural Australians.

A systematic approach to chronic heart failure care : a consensus statement

The National Heart Foundation of Australia assembled an expert panel to provide guidance on policy and system changes to improve the quality of care for people with chronic heart failure (CHF). The recommendations have the potential to reduce emergency presentations, hospitalisations and premature death among patients with CHF. Best-practice management of CHF involves evidencebased, multidisciplinary, patient-centred care, which leads to better health outcomes. A CHF care model is required to achieve this. Although CHF management programs exist, ensuring access for everyone remains a challenge. This is particularly so for Aboriginal and Torres Strait Islander peoples, those from non-metropolitan areas and lower socioeconomic backgrounds, and culturally and linguistically diverse populations. Lack of data and inadequate identifi cation of people with CHF prevents effi cient patient monitoring, limiting information to improve or optimise care. This leads to ineff ectiveness in measuring outcomes and evaluating the CHF care provided. Expanding current cardiac registries to include patients with CHF and developing mechanisms to promote data linkage across care transitions are essential. As the prevalence of CHF rises, the demand for multidisciplinary workforce support will increase. Workforce planning should provide access to services outside of large cities, one of the main challenges it is currently facing. To enhance community-based management of CHF, general practitioners should be empowered to lead care. Incentive arrangements should favour provision of care for Aboriginal and Torres Strait Islander peoples, those from lower socioeconomic backgrounds and rural areas, and culturally and linguistically diverse populations. Ongoing research is vital to improving systems of care for people with CHF. Future research activity needs to ensure the translation of valuable knowledge and high quality evidence into practice.

Patient self-management in chronic heart failure – establishing concordance between guidelines and practice

 Chronic heart failure (CHF) is a progressive and debilitating disease with a broad symptom profile, intermittently marked by periods of acute decompensation. CHF patients are encouraged to self-manage their illness, such as adhering to medical regimens and monitoring symptoms, to optimise health outcomes and quality of life. In so doing, patients are asked to collaborate with their health service providers with regard to their care. However, patients generally do not self-manage well, even with specialist support. Moreover, self- management interventions are yet to demonstrate morbidity or mortality benefits. Social network approaches to self-management consider the availability and mobilisation of all resources, beyond those of only the patient and healthcare providers. Used in conjunction with e-health platforms, social network approaches may offer a means by which to optimise self-management programmes of the future.

Chronic heart failure-induced skeletal muscle atrophy, necrosis, and changes in myogenic regulatiory factors

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)