Patient activation in advanced chronic kidney disease: a cross-sectional study.

BACKGROUND: Patient activation refers to the knowledge, confidence and skills required for the management of chronic disease and is antecedent to self-management. Greater self-management in chronic kidney disease (CKD) results in improved patient experience and patient outcomes. AIM: To examine patient activation levels in people with CKD stage 5 pre-dialysis and determine associations with sociodemographic characteristics, treatment adherence and healthcare utilisation. METHODS/DESIGN: People with CKD stage 5 not receiving dialysis from one Australian kidney care service. Patient activation was measured using the 13-item Patient Activation Measure (PAM-13). Sociodemographic and clinical outcome data (emergency department visits, admissions) were collected from medical records. Morisky Medication Adherence Scale was used to determine self-report medication adherence. RESULTS: Two hundred and four participants completed the study. The mean PAM-13 score was 53.4 (SD 13.8), with 73% reporting low activation levels (1 and 2). Patient activation scores significantly decreased with increased age (P < 0.001) and significantly increased with higher educational levels (P < 0.001). Higher patient activation level was associated with fewer hospital emergency department visits (P = 0.03) and increased medication adherence (P < 0.001). CONCLUSION: Patient activation levels are low in people with CKD stage 5 not receiving dialysis suggesting limited ability for self-management and capacity for optimally informed decisions about their healthcare. Efforts to improve patient activation need to consider age and education level.

The effectiveness of patient activation interventions in adults with chronic kidney disease: A systematic review and meta-analysis.

BACKGROUND: Chronic kidney disease (CKD) is a complex health condition that profoundly impacts an individual's general health and well-being throughout their entire lifetime. People with CKD require the knowledge, confidence, and skills to actively self-manage their health. This is referred to as patient activation. The efficacy of interventions to increase patient activation in the CKD population is unclear. AIM: This study aimed to examine the effectiveness of patient activation interventions on behavioral health-related outcomes among people with CKD stages 3-5. METHODS: A systematic review and meta-analysis of randomized controlled trials (RCTs) of patients with CKD stages 3-5 was performed. MEDLINE, EMCARE, EMBASE, and PsychINFO databases were searched between 2005 and February 2021. Risk of bias was assessed using the Joanna Bridge Institute critical appraisal tool. RESULTS: Nineteen RCTs that enrolled 4414 participants were included for synthesis. Only one RCT reported patient activation using the validated 13-item patient activation measure (PAM-13). Four studies demonstrated strong evidence that the intervention group developed a higher level of self-management compared to the control group (standardized mean differences [SMD] = 1.12, 95% CI [0.36, 1.87], p = .004). Eight RCTs led to a significant improvement in self-efficacy (SMD = 0.73, 95% CI [0.39, 1.06], p < .0001). There was weak to no evidence on the effect of the strategies shown on the physical component and mental components of health-related quality of life, and medication adherence. LINKING EVIDENCE TO ACTION: This meta-analysis highlights the importance of including tailored interventions using a cluster approach including patient education, goal setting with individualized action plan, and problem-solving to engage patients to be more actively involved in the self-management of their CKD.

Effect of patient activation interventions on health-related behavioral outcomes in adults with chronic kidney disease: a systematic review protocol.

OBJECTIVE: This review aims to examine the effect of patient activation interventions compared with usual care on health-related behavioral outcomes in adults with chronic kidney disease stages 3-5. INTRODUCTION: Chronic kidney disease is a global health problem associated with a high mortality, reduction of health-related quality of life, and high health care costs. The chronic nature requires active involvement and self-management of the person with chronic kidney disease. Patient activation is a self-management approach that refers to the knowledge, confidence, and skills of people to enable them to manage their own health needs. However, the effectiveness of patient activation interventions on health-related behavioral outcomes in this population have not yet been systematically evaluated. INCLUSION CRITERIA: This systematic review will include primary research studies measuring the effect of behavioral change interventions addressing beliefs, knowledge, confidence, and/or skills to optimize self-management in adult patients with chronic kidney disease stages 3-5 who are not receiving dialysis. Studies included in this review will be randomized controlled trials. METHODS: Published studies will be searched in MEDLINE, Embase, Emcare, and PsycINFO. Unpublished studies and gray literature sources will also be searched. Titles and abstracts of search results published in English from 2005 onward will be screened, and the full text of potentially relevant studies will be assessed in detail. Studies selected for inclusion will undergo critical appraisal. Data extracted will include specific details about population, study methods, interventions, and outcomes. Studies will be pooled in statistical meta-analysis, if possible. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020205084.

'Supportive and Palliative Care Indicators Tool (SPICT) improves renal nurses' confidence in recognising patients approaching end of life'.

BACKGROUND: Identification of people with deteriorating health is essential for quality patient-centred care and optimal management. The Supportive and Palliative Care Indicators Tool (SPICT) is a guide to identifying people with deteriorating health for care planning without incorporating a prognostic time frame. OBJECTIVES: To improve renal nursing staff confidence in identifying patients approaching end-of-life and advocate for appropriate multidisciplinary care planning. DESIGN: This pilot feasibility prospective cohort study conducted in the renal ward of a major metropolitan health service during 2019 included a preintervention/postintervention survey questionnaire. A programme of education was implemented training staff to recognise end-of-life and facilitate appropriate care planning. RESULTS: Several domains in the postintervention survey demonstrated a statistically significant improvement in renal nurses' perception of confidence in their ability to recognise end of life. Of the 210 patients admitted during the study period, 16% were recognised as SPICT positive triggering renal physicians to initiate discussions about end-of-life care planning with patients and their families and to document a plan. Six months poststudy, 72% of those patients recognised as SPICT positive had died with a documented plan of care in place. CONCLUSION: The use of SPICT for hospital admissions and the application of education in topics related to end-of-life care resulted in a significant improvement in nurses' confidence in recognising deteriorating and frail patients approaching their end of life. The use of this tool also increased the number of deteriorating patients approaching end of life with goals of care documented.

The melanoma research alliance: the power of patient advocacy to accelerate research and novel therapies.

Patient advocacy organizations play a major role in accelerating research and are particularly important in a disease like melanoma, for which there is an urgent need for new tools and treatments. Melanoma is a growing public health burden. In the United States alone, the incidence of melanoma has tripled over the past 30 years, and one American dies every hour from the disease. To accelerate the field, the Melanoma Research Alliance (MRA) was founded in 2007 and is now the largest private funder of melanoma research, having invested more than $48 million in innovative and translational research projects worldwide to date. This investment is bearing fruit in the recent transformation of the melanoma clinical landscape, which has brought new hope to patients and their families. Yet, even with new drugs on the market, much more needs to be done until melanoma is effectively addressed. MRA is part of a growing group of nonprofit disease research foundations collectively called "venture philanthropies" that are playing a powerful role in transforming the outlook for their disease by overcoming barriers that bog down progress, targeting key areas, and enhancing collaboration. MRA is leading an innovative agenda to accelerate efforts on behalf of patients. Our goal, while significant, is straightforward: to end suffering and death due to melanoma.

Opportunities and challenges in the development of experimental drug combinations for cancer.

It is becoming increasingly evident that cancers are dependent on a number of altered molecular pathways and can develop diverse mechanisms of resistance to therapy with single agents. Therefore, combination regimens may provide the best hope for effective therapies with durable effects. Despite preclinical data to support this notion, there are many challenges to the development of targeted combinations including scientific, economic, legal, and regulatory barriers. A discussion of these challenges and identification of models and best practices are presented with intent of aiding the research community in addressing real and perceived barriers to the development of combination therapies for cancer.