Definition of Evidence-Based Practice

The term evidence-based practice was coined in the 1990s and has been widely embraced by most healthcare disciplines.¹ Evidence-based practice (EBP) integrates the best scientific research evidence with clinical expertise of healthcare practitioners and patient and/or family preferences to facilitate clinical decision making.² Decisions are based upon factors from each domain: the clinical situation, the patient and family preferences, and the research evidence, and individualized to the circumstances. There are multiple models of EBP between and within healthcare disciplines. The conceptual model described by Satterfield et al is a interdisciplinary model based upon the strengths of EBP models and processes from medicine, nursing, psychology, social work, and public health¹ (Fig. 9-1). The strength of pediatric palliative care practice stems from the interdisciplinary collaboration of multiple healthcare disciplines. EBP is an approach to problem solving that addresses the needs of the organization, the individual practitioner, the patient, and the family to promote high-quality healthcare. Organizational experiences of quality improvement and financial data, combined with clinical research, clinical experience, and patient and/or family preferences promote shared decision making based upon all contextual factors.³ Palliative care is a relatively young discipline and pediatric palliative care is even younger. The evidence base in palliative care is not robust and there is a paucity of evidence specific to pediatrics.⁴

Evidence-based practice is a process as well as a practice descriptor.⁵ The process involves defining a practice issue, searching the literature for current research, critically appraising the evidence, synthesizing the evidence to make recommendations for changes in practice, implementing the recommended changes, and evaluating the outcomes. EBP relies on a holistic approach to decision making based less upon expert opinion. Translation of the domains of EBP, scientific research, clinical expertise, and patient and/or family preferences into practice produces products such as changes in clinical practice, clinical guidelines, organizational standards of practice, and opportunities for fostering a research agenda in pediatric palliative care.

The healthcare professions involved in pediatric palliative care, including medicine, nursing, psychology, social work, child life and others, are a science and applied professions with equal contributions to the art and science of clinical practice. The perceived value of evidence may vary depending upon the discipline of practice. Traditional evidence-based medicine relies heavily on randomized clinical trials, yet this approach to generations of evidence is not as practical for pediatric palliative care, where a vulnerable patient population is often excluded from clinical research.⁶ Most palliative care research is adult-focused and this is one of the challenges to creating pediatric palliative care evidence-based guidelines (Table 9-1). The narrow scope of pediatric palliative care may be too focused for most standard literature search engines. The value of expert clinicians within and between disciplines is unclear and often underestimated in determining EBP recommendations. Evidence must be defined broadly and considered within the context of the specific clinical issue. Evidence is published in a wide variety of journals pertinent to a spectrum of diseases.

TABLE 9-1 Assumptions and Challenges of Evidence-Based Practice in Pediatric Palliative Care

Assumptions

Challenges

1. The healthcare professions involved in pediatric* palliative care, including medicine, nursing, psychology, social work, child life and others, are a science and an applied profession with equal contribution to the art and science of clinical practice. 2. Evidence is the synthesis of scientific knowledge, clinical expertise and patient and family preferences to guide shared decision making. 3. Evidence must undergo critical appraisal prior to recommendations for practice changes. 4. Evidence-based practice influences clinical outcomes. 5. Resources and contextual factors in pediatric palliative care practice must be considered. 6. Pediatric palliative care is a transdisciplinary practice for which a common language must be defined. 7. The perceived value of evidence may vary depending upon the discipline of practice.

Levels of Evidence Used in Practice Guideline Development and Implications for Pediatrics

The development of clinical practice guidelines for the management of a variety of diseases and conditions brings together experts to review and summarize current evidence, evaluate the quality of the evidence, and make recommendations for practice. The National Consensus Project for Quality Palliative Care (NCP) brought together leaders of five national organizations representing hospice and palliative care. This task force followed a rigorous process of evidence review and consensus development to produce the Clinical Practice Guidelines for Quality Palliative Care in 2003, with an update in 2009.⁷ The National Quality Forum, a private, nonprofit membership organization recognized for its national leadership in healthcare quality improvement, reviewed and adopted the NCP guidelines as the basis for its Framework for Palliative and Hospice Care Quality Measurement and Reporting. Clinicians and clinical organizations identified 38 best practices for implementation.⁸ Quality indicators are being developed to evaluate the impact of those practices.

All clinical recommendations are not equivalent. Their importance will vary with the likelihood of significant benefit or harm avoidance to the patient. The evidence and experience that provides the foundation for the recommendation will also vary in quality depending on the methods used to produce the results. Frameworks have been developed to rate these factors within a set of clinical guidelines. These frameworks use a letter designation for how strongly the practice recommendation is made or how uniform the consensus is for the recommendation, and a numeral designation for the quality of the evidence supporting that recommendation (Tables 9-2 and 9-3).

TABLE 9-2 Framework for Rating Recommendations for Clinical Practice

Strength of recommendation	Quality of evidence for the recommendation	Modified coding for pediatrics
A: Strong recommendation B: Moderate recommendation C: Optional recommendation

I: One or more randomized controlled trials with clinical outcomes and/or validated laboratory endpoints I: One or more randomized trials in children* with clinical outcomes and/or validated laboratory endpoints I*: One or more randomized trials in adults with clinical outcomes and/or validated laboratory endpoints with accompanying data in children* from one or more well-designed, nonrandomized trials or observational cohort studies with long-term clinical outcomes II: One or more well-designed, nonrandomized trials or observational cohort studies with long-term clinical outcomes II: One or more well-designed, nonrandomized trials or observational cohort studies in children* with long-term clinical outcomes II*: One or more well-designed, nonrandomized trials or observational cohort studies in adults with long-term clinical outcomes with accompanying data in children* from one or more smaller nonrandomized trials or cohort studies with clinical outcome data III: Expert opinion III: Expert opinion

* Studies that include children or children and adolescents but not studies limited to post-pubertal adolescents.