Role matters in understanding 'quality' in palliative care: a qualitative analysis of patient, caregiver and practitioner perspectives.

OBJECTIVES: To compare the discussions from two panels on the concept of palliative care quality for patients with advanced cancer, exploring the priorities reflected in each group's perspectives. DESIGN: We convened two RAND-UCLA appropriateness panel discussions on palliative care quality in advanced cancer. Discussions were audio-recorded and transcribed verbatim. Panel transcripts were analysed thematically using a matrix approach to examine perceptions and experiences of quality. SETTING: Discussions were framed within the context of advanced cancer care and palliative care. PARTICIPANTS: The patient-caregiver panel had 9 patients with current or a history of cancer and caregivers, and the practitioner panel had 10 expert practitioners representing fields of oncology, primary care, social work, palliative care, nursing, pain management and ethics. RESULTS: Our analysis identified three thematic categories for understanding quality common across both groups and nine subthemes within those categories. At the highest level, quality was conceived as: (1) the patient and caregiver experience of care, (2) technical competence and (3) the structure of health system. Among the subthemes, four were present in only one of the two group's discussions: 'purpose and action' was specific to the patient-caregiver panel, whereas 'adhering to best medical practice', 'mitigating unintended consequences and side effects', and 'health system resources and costs' were specific to the practitioner panel. CONCLUSIONS: While both panels aligned on the three key domains of quality, the particular dimensions through which they perceived quality varied in relation to their experience and role as a professional provider of care versus recipient of healthcare services. These differences suggest the importance of adopting a collaborative approach to quality measurement and improvement so that the values of all interested parties are represented in improvement efforts.

What Patients Facing Cancer and Caregivers Want From Communication in Times of Crisis: A Qualitative Study in the Early Months of the COVID-19 Pandemic.

BACKGROUND: Interpersonal communication is a cornerstone of patient-centered care. We aimed to identify what patients with cancer and caregivers may want from communication during a public health crisis. METHODS: We interviewed 15 patients (8 Veteran, 7 non-Veteran) and caregivers from regionally, racially, and ethnically diverse backgrounds across the US about serious illness care and quality of care during the COVID-19 pandemic Using an iterative, inductive and deductive process, 2 coders analyzed content associated with the code "Communication," which appeared 71 times, and identified 5 themes. RESULTS: Participants identified as White (10), Latino/a (3), Asian (1), and Black (1). (1) Help patients and caregivers prepare for care during crisis by communicating medical information directly and proactively. (2) Explain how a crisis might influence medical recommendations and impact on recovery from illness. (3) Use key messengers to improve communication between primary teams, patients, and caregivers. (4) Include caregivers and families in communication when they cannot be physically present. (5) Foster bidirectional communication with patients and families to engage them in shared decision-making during a vulnerable time. CONCLUSION: Communication is critical during a public health crisis yet overwhelmed clinicians may not be able to communicate effectively. Communicating with caregivers and family, transparent and timely communication, ensuring diverse providers are on the same page, and effective listening are known gaps even before the COVID-19 pandemic. Clinicians may need quick interventions, like education about goals of care, to remind them about what seriously ill patients and their caregivers want from communication and offer patient-centered care during crises.

Facilitators of palliative care quality improvement team cohesion: Lessons from a seven-site implementation project in India.

BACKGROUND: The Palliative Care: Promoting Access and Improvement of the Cancer Experience (PC-PAICE) initiative is a team-based, palliative care (PC) quality improvement (QI) project working to promote high-quality PC in India. As a PC QI initiative, PC-PAICE implementation relied upon building interdisciplinary teams, providing the ideal context for understanding facilitators of team cohesion that compelled clinical, organizational, and administrative team members to work together. There is an opportunity to leverage the intersection between QI implementation and organizational theory to inform and improve implementation science. PURPOSE: As a subaim of a larger implementation evaluation, we aimed to identify facilitators of team cohesion within QI implementation context. METHODOLOGY: A quota sampling approach captured the perspectives of 44 stakeholders across three strata (organizational leaders, clinical leaders, and clinical team members) from all seven sites through a semistructured interview guide informed by the Consolidated Framework for Implementation Research (CFIR). We used a combination of inductive and deductive approaches informed by organizational theory to identify facilitators. RESULT: We identified three facilitators of PC team cohesion: (a) balancing formalization and flexibility around team roles, (b) establishing widespread awareness of the QI project, and (c) prioritizing a nonhierarchical organizational culture. PRACTICE IMPLICATIONS: Leveraging CFIR to analyze PC-PAICE stakeholder interviews created a data set conducive to understanding complex multisite implementation. Layering role and team theory to our implementation analysis helped us identify facilitators of team cohesion across levels within the team (bounded team), beyond the team (teaming), and surrounding the team (culture). These insights demonstrate the value of team and role theories in implementation evaluation efforts.

Integrating Patient and Expert Perspectives to Conceptualize High-Quality Palliative Cancer Care for Symptoms in the US Veterans Health Administration: A Qualitative Study.

Quality measurement is typically the domain of clinical experts and health system leaders; patient/caregiver perspectives are rarely solicited. We aimed to describe and integrate clinician and patient/caregiver conceptualizations of high-quality palliative symptom care for patients receiving care for advanced cancer within the US Veterans Health Administration in the context of existing quality measures. We conducted a secondary qualitative analysis of transcripts from prioritization discussions of process quality measures relevant to cancer palliative care. These discussions occurred during 2 modified RAND-UCLA appropriateness panels: a panel of 10 palliative care clinical expert stakeholders (7 physicians, 2 nurses, 1 social worker) and a panel of 9 patients/caregivers with cancer experience. Discussions were recorded, transcribed, and independently double-coded using an a priori logical framework. Content analysis was used to identify subthemes within codes and axial coding was used to identify crosscutting themes. Patients/caregivers and clinical experts contributed important perspectives to 3 crosscutting themes. First, proactive elicitation of symptoms is critical. Patients/caregivers especially emphasized importance of comprehensive and proactive screening and assessment, especially for pain and mental health. Second, screening and assessment alone is not enough; information elicited from patients must inform care. Measuring screening/assessment and management care processes separately has important limitations. Lastly, high-quality symptom management can be broadly defined if it is patient-centered; high-quality care takes an individualized approach and might include non-medical or non-pharmacological symptom management. Integrating the perspectives of clinical experts and patients/caregivers is critical for health systems to consider as they design and implement quality measures for palliative cancer care.

Quality Improvement in Itself Changes Your Thinking: Lessons From Disseminating Quality Improvement Methods Through a Multisite International Collaborative Palliative Care Project in India.

PURPOSE: Seven major palliative care (PC) centers in India were mentored through the Palliative Care-Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) by US and Australian academic institutions to implement a quality improvement (QI) project to improve the accessibility and quality of PC at their respective centers. The objective was to evaluate the experiences of teams in implementing QI methods across diverse geographical settings in India. METHODS: A quota sampling approach was used to elicit perspectives of local stakeholders at each site. The Consolidated Framework for Implementation Research informed development of a semistructured interview guide. Analysis leveraged deductive and inductive approaches. RESULTS: We interviewed 44 participants (eight organizational leaders, 12 clinical leaders, and 24 team members) at seven sites and identified five themes. (1) Implementing QI methods enabled QI teams to think analytically to solve a complex problem and to identify resources. (2) Developing a problem statement by identifying specific gaps in patient care fostered team collaboration toward a common goal. (3) Making use of QI tools (eg, A3 process) systematically provided a new, straightforward QI toolkit and improved QI teams' conceptual understanding. (4) Enhancing stakeholder engagement allowed shared understanding of QI team members' roles and processes and shaped interventions tailored to the local context. (5) Designing less subjective processes for patient care such as assessment scales to identify patient's symptomatic needs positively changed work practices and culture. CONCLUSION: Engaging and empowering multiple stakeholders to use QI methods facilitated the expansion and improvement of PC and cancer services in India. PC-PAICE demonstrated an efficient, effective way to apply QI methods in an international context. The impact of PC-PAICE is being magnified by developing a cadre of Indian QI leaders.

Empowering families to take on a palliative caregiver role for patients with cancer in India: Persistent challenges and promising strategies.

BACKGROUND: The population of patients with cancer requiring palliative care (PC) is on the rise in India. Family caregivers will be essential members of the care team in the provision of PC. OBJECTIVE: We aimed to characterize provider perspectives of the challenges that Indian families face in taking on a palliative caregiving role. METHOD: Data for this analysis came from an evaluation of the PC-PAICE project, a series of quality improvement interventions for PC in India. We conducted 44 in-depth semi-structured interviews with organizational leaders and clinical team members at seven geographically and structurally diverse settings. Through thematic content analysis, themes relating to the caregivers' role were identified using a combination of deductive and inductive approaches. RESULT: Contextual challenges to taking up the PC caregiving role included family members' limited knowledge about PC and cancer, the necessity of training for caregiving responsibilities, and cultural preferences for pursuing curative treatments over palliative ones. Some logistical challenges include financial, time, and mental health limitations that family caregivers may encounter when navigating the expectations of taking on the caregiving role. Strategies to facilitate family buy-in for PC provision include adopting a family care model, connecting them to services provided by Non-Governmental Organizations, leveraging volunteers and social workers to foster PC awareness and training, and responding specifically to family's requests. CONCLUSION: Understanding and addressing the various challenges that families face in adopting the caregiver role are essential steps in the provision and expansion of PC in India. Locally initiated quality improvement projects can be a way to address these challenges based on the context.

Patient and Caregiver Prioritization of Palliative and End-of-Life Cancer Care Quality Measures.

BACKGROUND: Development and prioritization of quality measures typically relies on experts in clinical medicine, but patients and their caregivers may have different perspectives on quality measurement priorities. OBJECTIVE: To inform priorities for health system implementation of palliative cancer and end-of-life care quality measures by eliciting perspectives of patients and caregivers. DESIGN: Using modified RAND-UCLA Appropriateness Panel methods and materials tailored for knowledgeable lay participants, we convened a panel to rate cancer palliative care process quality measure concepts before and after a 1-day, in-person meeting. PARTICIPANTS: Nine patients and caregivers with experience living with or caring for patients with cancer. MAIN MEASURES: Panelists rated each concept on importance for providing patient- and family-centered care on a nine-point scale and each panelist nominated five highest priority measure concepts ("top 5"). KEY RESULTS: Cancer patient and caregiver panelists rated all measure concepts presented as highly important to patient- and family- centered care (median rating ≥ 7) in pre-panel (mean rating range, 6.9-8.8) and post-panel ratings (mean rating range, 7.2-8.9). Forced choice nominations of the "top 5" helped distinguish similarly rated measure concepts. Measure concepts nominated into the "top 5" by three or more panelists included two measure concepts of communication (goals of care discussions and discussion of prognosis), one measure concept on providing comprehensive assessments of patients, and three on symptoms including pain management plans, improvement in pain, and depression management plans. Patients and caregivers nominated one additional measure concept (pain screening) back into consideration, bringing the total number of measure concepts under consideration to 21. CONCLUSIONS: Input from cancer patients and caregivers helped identify quality measurement priorities for health system implementation. Forced choice nominations were useful to discriminate concepts with the highest perceived importance. Our approach serves as a model for incorporating patient and caregiver priorities in quality measure development and implementation.

Expert Stakeholder Prioritization of Process Quality Measures to Achieve Patient- and Family-Centered Palliative and End-of-Life Cancer Care.

Importance: Quality measures of palliative and end-of-life care relevant to patients with advanced cancer have been developed, but few are in routine use. It is unclear which of these measures are most important for providing patient- and family-centered care and have high potential for improving quality of care. Objective: To prioritize process quality measures for assessing delivery of patient- and family-centered palliative and end-of-life cancer care in US Veterans Affairs (VA) health care facilities. Design, Setting, Participants: A panel of 10 palliative and cancer care expert stakeholders (7 physicians, 2 nurses, 1 social worker) rated process quality measure concepts before and after a 1-day meeting. Measures: Panelists rated 64 measure concepts on a nine-point scale on: (1) importance to providing patient- and family-centered care, and (2) potential for quality improvement (QI). Panelists also nominated five highest priority measure concepts ("top 5") on each attribute. Results: Panelists rated most measure concepts (54 premeeting, 56 post-meeting) as highly important to patient- and family-centered care (median rating ≥7). Considerably fewer (17 premeeting, 22 post-meeting) were rated as having high potential for QI. Measure concepts having postpanel median ratings ≥7 and nominated by one or more panelists as "top 5" on either attribute comprised a shortlist of 20 measure concepts. Conclusions: A panel of expert stakeholders helped prioritize 64 measure concepts into a shortlist of 20. Half of the shortlisted measures were related to communication about patient preferences and decision making, and half were related to symptom assessment and treatment.

Measure Scan and Synthesis of Palliative and End-of-Life Process Quality Measures for Advanced Cancer.

PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer. METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups. RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1). CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.