Search

Introduction Radical cystectomy remains the standard of care for muscle-invasive bladder cancer and high-risk non-muscle-invasive bladder cancer. Postoperative ostomy education is common, but patients struggle to maintain self-management practices. A preoperative ostomy education program was developed to meet this need, and we conducted a qualitative study with participating patient-caregiver dyads to evaluate the educational and psychosocial impacts of the program and examine alignment with program objectives. Materials and methods A qualitative descriptive study was conducted utilizing a thematic analysis approach. Sixteen patients, eighteen caregivers, and three program educators completed semi-structured interviews from 3 to 18 months post the program. Interviews were audio-recorded and transcribed. Thirteen end-of-course surveys from the initial educational program cohort were transcribed, coded, analyzed; this data was triangulated with patient, caregiver, and educator interviews. Results Analysis uncovered three themes: (1) Patient and caregiver motivation to attend the program, (2) attitudes toward this life-changing event, and (3) education. For theme 1, patients and caregivers cited lack of knowledge, fear, and concern about ostomy surgery and care as motivation. For theme 2, there were a variety of attitudes toward the ostomy, ranging from avoidance to acceptance, and a similar breadth of attitudes toward caregiving, with some patients and caregivers describing ongoing dependence and other patients seeking complete independence. For theme 3, the interactive curriculum was determined to be effective, and the patient advocate was cited as the most memorable program component. Conclusions A formal preoperative ostomy education program employing an interactive educational approach and featuring a patient advocate can prepare bladder cancer patients and caregivers for ostomy self-management and post-ostomy life.

Context COVID-19 created unprecedented demand for palliative care at a time when in-person communication was highly restricted, straining efforts to care for patients and families. Objectives To qualitatively explore the challenges presented by the COVID-19 pandemic from the perspective of palliative care clinicians. Specifically we sought to: 1) Describe the strategies adopted by palliative care clinicians to cope with new challenges including patient and clinician isolation, prognostication of an emergent disease, and rapidly rising numbers of severely ill patients; 2) Identify additions or adjustments to in-person and system-related palliative care training, methods, and tools made during pandemics. Methods This descriptive qualitative study utilized a thematic approach for data analysis of individual, semi-structured interviews with palliative care clinicians (n = 25). Codes, categories, and emerging themes were identified through an iterative, comparative method. Methods align with the Consolidated Criteria for Reporting Qualitative Research (COREQ) Results A theme of “Expanding the reach of palliative care for today and the future” was identified with three subthemes: 1) Redefining attitudes and hardship due to collective uncertainty, 2) Breaking with the past towards integrated concept of palliative care, and 3) Building capacity through primary palliative care training. Conclusion COVID-19 forced hospital systems to consider the inclusion of palliative care in unforeseen ways due to an uncontrollable, unpredictable disease. Faced with unprecedented uncertainty, palliative care clinicians utilized strategies for integration and innovation across hospitals, particularly in intensive care units and emergency departments. A need to build capacity through increased primary palliative care access and training was identified.

INTRODUCTION Adherence to hydroxyurea is essential to modify the pathology of sickle cell disease. OBJECTIVE To identify best strategies to support adherence to hydroxyurea in persons with sickle cell disease. METHODS A systematic review was conducted. PubMed, Cumulative Index of Nursing and Allied Health Literature, PsycArticles, PsycInfo, Embase databases and Cochrane Library were searched for studies between 1998 to 2018. RESULTS Six studies met inclusion criteria: two randomized controlled trials, three prospective studies, and one retrospective chart review. DISCUSSION Few studies addressed strategies that tested adherence interventions primarily composed of behavioral change resulting in medication adherence. More studies on hydroxyurea adherence are needed.

326 Background: Overall survival from metastatic renal cell carcinoma (RCC) has risen in recent years due in part due to therapies such as immune checkpoint inhibitors (ICI) and tyrosine kinase inhibitors (TKI). TKI and ICI have unique and high-impact side effect profiles, and deficits persist in clinicians’ understanding of patient tolerance of and response to treatment, particularly in rural and community practices. We developed a tele-mentoring series to improve knowledge and clinical care gaps in ICI and TKI toxicity assessment and management for persons treated for RCC. Methods: Rural and community cancer care teams were invited by the Masonic Cancer Alliance, the outreach network of The University of Kansas Cancer Center, to participate in a five session Project ECHO (Extension for Community Health Outcomes) didactic and case-based educational series. Topics included distress screening, shared decision-making for RCC treatment, ICI and TKI toxicity assessment and management, at-home ICI administration, and implementing toxicity monitoring protocols. A mixed-methods approach collected data from participants pre- and post-TOQQ-RCC series. Clinician interviews assessed current practice protocols and were transcribed and analyzed thematically. Organizational Readiness for Implementing Change (ORIC) was administered pre- and post-TOQQ-RCC intervention; mean scores were calculated to determine readiness for change in toxicity monitoring and management protocols. Participant engagement and satisfaction were assessed; satisfaction measure included a Likert-like scale of poor, fair, average, good, and outstanding. Results: Fifty-two attendees from 11 cancer care institutions across Kansas and Missouri registered for the TOQQ-RCC sessions. An average of 15 participants attended each session including physicians, advanced practice providers, nurses, and other disciplines. Session evaluations rated content/delivery as good or outstanding. Themes from qualitative analysis revealed patient education as a primary barrier to effective toxicity identification and management. One-third of participants completed ORIC post-assessment; mean ORIC scores dropped by a mean 0.4 (10%) post-TOQQ-RCC series, indicating decreased readiness to implement changes to toxicity monitoring and management protocols. Conclusions: Rural and community oncology clinicians are willing to engage in tele-mentoring to improve knowledge and clinical care gaps regarding ICI and TKI toxicity assessment and management. Decrease in ORIC scores post-TOQQ-RCC series may indicate increased understanding of the complex processes and resources required to institute meaningful improvement to toxicity monitoring and management protocols for patients treated in rural and community settings. Future directions will include formal organizational needs assessments.

Implementing behavioral interventions for cardiovascular risk reduction and weight management is challenging in primary care. Primary care patients and providers were recruited for qualitative interviews to identify priorities and preferences for addressing weight management. Thematic analysis was used to identify relevant resources, barriers to lifestyle modification, health behavior change, and implementation of weight management strategies into care. Patients and providers prioritized increasing physical activity and healthy diets when managing chronic disease; and reported decreased patient motivation, knowledge, and limited organizational capacity and time among providers to deliver intensive interventions. Providers and patients disagreed regarding who owns accountability for weight management.

Context To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts. Objectives This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries. Methods After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes. Results Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions. Conclusion Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings.

Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention? Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7). Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability. Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.