Shirley Otis-Green

Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference

A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

Quality of Life in Breast Cancer Survivors as Identified by Focus Groups

Currently, over 1,700,000 women are living with breast cancer in the United States. These long‐term survivors of breast cancer are challenged to redirect their energy from issues of cancer treatment and early side effects toward quality of life issues related to long‐term survivorship, such as menopause, infertility, fear of recurrence, family distress, and uncertainty. In an attempt to obtain patient perspectives on quality of life and health care issues faced by breast cancer survivors, focus group methodology was utilized in the first year of a 2 year study. The sample was stratified to represent three age groups: < 40 years, 40–60 years and > 60, and was intended to represent different developmental levels believed to have varying experiences with quality of life and potentially divergent needs following breast cancer diagnosis. Results of these focus groups revealed unique quality of life concerns of breast cancer survivors across four domains of physical, psychological, social, and spiritual well being. Each of these domains yields important implications for future research and clinical practice.

QUALITY OF LIFE IN BREAST CANCER : PART I : PHYSICAL AND SOCIAL WELL-BEING

Almost 2 million breast cancer survivors reside in the United States. An increase in consumer advocacy and media attention to this disease has helped bring breast cancer survivorship to the forefront of public attention. This has led to increased attention on quality of life (QOL) issues for these survivors of breast cancer. This two-part article presents the results of a qualitative, descriptive study evaluating the QOL of 21 breast cancer survivors. This study is based on our conceptual model of QOL including physical, psychological, social, and spiritual well-being. Part I of this article describes the impact of breast cancer on the physical and social domains of QOL based on in-depth interviews with breast cancer survivors.

Methadone Safety: A Clinical Practice Guideline From the American Pain Society and College on Problems of Drug Dependence, in Collaboration With the Heart Rhythm Society

UNLABELLED Methadone is used for the treatment of opioid addiction and for treatment of chronic pain. The safety of methadone has been called into question by data indicating a large increase in the number of methadone-associated overdose deaths in recent years that has occurred in parallel with a dramatic rise in the use of methadone for chronic pain. The American Pain Society and the College on Problems of Drug Dependence, in collaboration with the Heart Rhythm Society, commissioned an interdisciplinary expert panel to develop a clinical practice guideline on safer prescribing of methadone for treatment of opioid addiction and chronic pain. As part of the guideline development process, the American Pain Society commissioned a systematic review of various aspects related to safety of methadone. After a review of the available evidence, the expert panel concluded that measures can be taken to promote safer use of methadone. Specific recommendations include the need to educate and counsel patients on methadone safety, use of electrocardiography to identify persons at greater risk for methadone-associated arrhythmia, use of alternative opioids in patients at high risk of complications related to corrected electrocardiographic QTc interval prolongation, careful dose initiation and titration of methadone, and diligent monitoring and follow-up. Although these guidelines are based on a systematic review, the panel identified numerous research gaps, most recommendations were based on low-quality evidence, and no recommendations were based on high-quality evidence. PERSPECTIVE This guideline, based on a systematic review of the evidence on methadone safety, provides recommendations developed by a multidisciplinary expert panel. Safe use of methadone requires clinical skills and knowledge in use of methadone to mitigate potential risks, including serious risks related to risk of overdose and cardiac arrhythmias.

A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

BACKGROUND Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. METHODS A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. RESULTS The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative groups success.

Management of Chronic Pain in Survivors of Adult Cancers: American Society of Clinical Oncology Clinical Practice Guideline

PURPOSE To provide evidence-based guidance on the optimum management of chronic pain in adult cancer survivors. METHODS An ASCO-convened expert panel conducted a systematic literature search of studies investigating chronic pain management in cancer survivors. Outcomes of interest included symptom relief, pain intensity, quality of life, functional outcomes, adverse events, misuse or diversion, and risk assessment or mitigation. RESULTS A total of 63 studies met eligibility criteria and compose the evidentiary basis for the recommendations. Studies tended to be heterogeneous in terms of quality, size, and populations. Primary outcomes also varied across the studies, and in most cases, were not directly comparable because of different outcomes, measurements, and instruments used at different time points. Because of a paucity of high-quality evidence, many recommendations are based on expert consensus. RECOMMENDATIONS Clinicians should screen for pain at each encounter. Recurrent disease, second malignancy, or late-onset treatment effects in any patient who reports new-onset pain should be evaluated, treated, and monitored. Clinicians should determine the need for other health professionals to provide comprehensive pain management care in patients with complex needs. Systemic nonopioid analgesics and adjuvant analgesics may be prescribed to relieve chronic pain and/or to improve function. Clinicians may prescribe a trial of opioids in carefully selected patients with cancer who do not respond to more conservative management and who continue to experience distress or functional impairment. Risks of adverse effects of opioids should be assessed. Clinicians should clearly understand terminology such as tolerance, dependence, abuse, and addiction as it relates to the use of opioids and should incorporate universal precautions to minimize abuse, addiction, and adverse consequences. Additional information is available at www.asco.org/chronic-pain-guideline and www.asco.org/guidelineswiki.

Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer.

PURPOSE/OBJECTIVES To describe burden, skills preparedness, and quality of life (QOL) for caregivers of patients with non-small cell lung cancer (NSCLC), and describe how the findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care. DESIGN Descriptive, longitudinal. SETTING A National Cancer Institute-designated comprehensive cancer center in southern California. SAMPLE 163 family members or friends aged 18 years or older and identified by patients as being a caregiver. METHODS All eligible caregivers were approached by advanced practice nurses during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated-measures analysis of variance was used to test for change over time for all predictor and outcome variables. MAIN RESEARCH VARIABLES Caregiver burden, skills preparedness, psychological distress, and QOL. FINDINGS Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline but decreased over time. Psychological distress was moderate but increased in the study period. Overall QOL was moderate at baseline and decreased significantly over time. Psychological well-being had the worst QOL score. CONCLUSIONS Caregivers experienced high levels of caregiver burden and reported deteriorations in psychological well-being and overall QOL. IMPLICATIONS FOR NURSING Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory. KNOWLEDGE TRANSLATION Although family caregivers are profoundly impacted by a loved ones lung cancer diagnosis, the literature about caregiver burden, skills preparedness, and QOL is limited. Current evidence suggests that family caregivers can be negatively impacted by a loved ones cancer diagnosis. Caregiver-specific support interventions are needed to eliminate the burden of caregiving in lung cancer.

Feasibility of an Ovarian Cancer Quality-of-Life Psychoeducational Intervention

Background. Diagnosis of ovarian cancer often portends a poor prognosis with significant quality-of-life (QOL) concerns. Method. We report on a pilot study that tested the feasibility of a structured, ovarian cancer psychoeducational intervention (OCPI). Patients (N=33) were randomly assigned to either the control or OCPI study arms in which those in the intervention arm received 4 sequential, structured, in-person educational sessions. Data were collected at the time of accrual and at 1 and 3 months postaccrual. Results. This study demonstrated the feasibility of a structured psychoeducational program in an outpatient clinical setting. Conclusion. Study findings underscore the importance of developing interventions that address the 4 QOL domains impacted by ovarian cancer and support initiating a comprehensive psychoeducational intervention earlier in the course of illness.

Applying the National Quality Forum Preferred Practices for Palliative and Hospice Care: A Social Work Perspective

ABSTRACT The National Consensus Projects (NCP) Clinical Practice Guidelines for Quality Palliative Care, published in 2004, defined eight domains of care essential to palliative care clinical practice. The National Quality Forums (NQF) 2006 document, A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report, based on the NCPs Guidelines, identified 38 evidence-based preferred practices for palliative care. This article demonstrates how the Guidelines and Preferred Practices may be operationalized in practice, focusing specifically on Domain 4 of the Guidelines, “Social Aspects of Care.” Domain 4 incorporates many pertinent aspects of hospice and palliative care related to communication and care planning. In particular, emphasized is the inclusion of the patient and family in discussions about ongoing care and creation of care plans that respect the social community of patient and family.

La mejora de la calidad de los cuidados espirituales como una dimensión de los cuidados paliativos: el informe de la Conferencia de Consenso*

Resumen Los dias 17 y 18 de febrero de 2009, en Pasadena (California, Estados Unidos), se celebro una Conferencia de Consenso patrocinada por la Fundacion Archstone de Long Beach (California). La conferencia se baso en el convencimiento de que el cuidado espiritual es un componente fundamental de los cuidados paliativos. Este documento, asi como las recomendaciones que incluye de la conferencia, se basa en documentacion previa, las directrices del Proyecto Nacional de Consenso, la Guia de Buenas Practicas del Foro Nacional de Calidad y en presentaciones de la propia conferencia.