Accountability for patient self-management of chronic conditions; ethical analysis and a proposal

Abstract

Patient self-management (PSM) of varying portions of therapy for chronic illness is expanding. However, several current conditions of practice are ethically problematic. Standards remain process-oriented, and accountability for patient outcomes and quality of practice of both patient and provider is diffuse. PSM carries important benefits but largely unmonitored potential harms. Also, access to preparation for safe PSM appears to be skewed in favour of high socio-economic classes. This condition persists even though available evidence supports the conclusion that less advantaged patients with poor disease outcomes can be taught to self-manage, albeit they require more intensive and prolonged interventions. Routine clinical use of well-validated measurement instruments could serve to develop evidence-based standards of PSM, quality improvement and effective public policy. Development of a standard dataset would facilitate description of the effectiveness of existing programmes and comparison across programmes. Such reform will require investment in the development of instruments that measure patient ability to make sound clinical judgements and sustain PSM over changed disease and social conditions. It will take advantage of modem psychometric theory, which is increasingly necessary for building the empirical base for evidence-based healthcare.

Everyday ethics and help-seeking in early rheumatoid arthritis

“…Inadequate information limits opportunities for individuals to make autonomous decisions about their health; it also becomes a (procedural) justice issue when the opportunity to develop and exercise one's capacities and express one's experiences is denied [39]. In the case of RA, and other chronic illnesses, when timely treatment is critical to limit disease progression and permanent harms, optimal benefits are diminished.…”

“…As Redman notes, an ethical framework illuminates how unsupported self-management can limit the potential for benefits and lead to harm [39]. Inadequate information limits opportunities for individuals to make autonomous decisions about their health; it also becomes a (procedural) justice issue when the opportunity to develop and exercise one's capacities and express one's experiences is denied [39].…”

State of the Science

“…Although persons with higher education are more likely to engage in self-care than those who are poorly educated, 202 a low education level does not preclude one from attaining the health literacy necessary to engage in effective self-care. 203,204 As many as 90 million Americans have poor health literacy, 197 and this is probably a worldwide issue. 205 Poor health literacy impairs self-care by making it difficult for the patient to negotiate our complex healthcare system, as well as to understand and act on essential health-related information.…”

A Phase II Multicentered, Single-Blind, Randomized, Controlled Trial of the Stroke Self-Management Program

“…Recent evidence supports the inclusion of disadvantaged patients with poor disease outcomes in self-management interventions. 12 In Australia, the most commonly available self-management course is the generic Stanford University program (http:// patienteducation.stanford.edu/programs/cdsmp.html). 11 However, disease-specific self-management programs may have advantages over generic programs.…”