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To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.
Methods
Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.
Results
Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient’s treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a “one stop shop” containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.
Significance of results
This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.
All accredited cancer institutions are required to screen patients for psychosocial distress. This paper describes the development, implementation, and preliminary outcomes of the University of California San Diego Health Moores Cancer Center Wellbeing Screening Program.
Method
Essential steps learned in a formal National Cancer Institute–funded training workshop entitled “Implementing Comprehensive Biopsychosocial Screening” were followed to ensure successful program implementation. These steps included identification of stakeholders; formation of a working committee; establishment of a vision, process, and implementation timeline; creation of a screening tool; development of patient educational material; tool integration into an electronic medical record system; staff training and pilot testing of tool administration; and education about tool results and appropriate follow-up actions. Screening data were collected and analyzed retrospectively for preliminary results and rapid cycle improvement of the wellbeing screening process.
Results
Over an 8-month implementation and assessment period, the screening tool was administered 5,610 times of 7,664 expected administrations (73.2%.) to 2,394 unique patients. Visits in which the questionnaire was administered averaged 39.6 ± 14.8 minutes, compared with 40.3 ± 15.2 minutes for visits in which the questionnaire was not administered (t = −1.76, df = 7,662, p = 0.079).
Significance of results
This program provides a process and a tool for successful implementation of distress screening in cancer centers, in a meaningful way for patients and providers, while meeting accreditation standards. Further, meaningful data about patient distress and tool performance were able to be collected and utilized.
Limited research exists examining the biopsychosocial experience of patients diagnosed with metastatic renal cell carcinoma (mRCC), a disease commonly associated with a poor prognosis. The purpose of this study was to describe rates and types of distress in mRCC patients and explore the relationship between distress and overall survival.
Method
A cohort of 102 patients with mRCC treated at a single institution was assessed by a touch screen–based instrument comprising 22 core items spanning physical, practical, functional, and emotional domains. Association between biopsychosocial distress and clinicopathologic criteria was interrogated. Overall survival was compared between patients with low distress versus high distress.
Result
High rates of distress (20.7%) were found among patients newly diagnosed with mRCC. Among those domains contributing to distress, pain, fatigue, and financial comorbidity were the most commonly reported by patients with mRCC. A trend toward poorer overall survival in those patients with high distress versus low distress was observed among mRCC patients.
Significance of results
Based on data from a relatively large sample of patients, this study provides the first specific insights into the potential impact of biopsychosocial distress and outcomes among patients with mRCC.
Many cancer centers struggle to implement standardized distress screening despite the American College of Surgeons’ Commission on Cancer 2012 mandate for a distress screening program standard of care by 2015. This paper presents outcomes for the first cohort of participants (n = 36) of a Screening for Psychosocial Distress Program (SPDP), a 2-year training program designed to assist clinicians in implementing routine distress screening as mandated by the American College of Surgeons Commission on Cancer. Specifically, participants’ success with distress screening implementation, institutional barriers and facilitators to implementation, and the role of the SPDP are described.
Method
This research followed a longitudinal pre- and posttest mixed methods design. An investigator-developed questionnaire collected qualitative (distress screening goals, institutional barriers and facilitators, facilitators associated with participation in the SPDP) and quantitative (level of goal achievement) data at 6, 12, and 24 months of participation in the SPDP. Conventional content analysis was applied to qualitative data. Mixed methods data analysis in Dedoose evaluated (1) types and number of distress screening goals, barriers, and facilitators, and (2) goal achievement at 6, 12, and 24 months of participation.
Result
Ninety-five percent of distress screening implementation goals were completed after 2 years of participation. Most common institutional barriers to distress screening implementation were “lack of staff,” “competing demands,” and “staff turn-over.” Most common institutional facilitators were “buy-in,” “institutional support,” and “recognition of participants’ expertise.” The number of reported facilitators associated with SPDP participation was higher than the number associated with any institutional factor, and increased over time of participation.
Significance of results
Participating in training programs to implement distress screening may facilitate successful achievement of the Commission on Cancer's distress screening standard, and benefits seem to increase with time of participation. Training programs are needed to promote facilitators and overcome barriers to distress screening.
We replicated a 1994 study that surveyed the state of supportive care services due to changes in the field and the increased need for such services. We provide an updated assessment, comparing the changes that have occurred and describing the current status of supportive care services in comprehensive cancer settings.
Method:
We used Coluzzi and colleague's 60-question survey from their 1995 Journal of Clinical Oncology article to frame the 98-question survey employed in the current study. Medical and palliative care directors for the 2011 National Cancer Institute (NCI) comprehensive cancer centers were surveyed regarding their supportive care services and their subjective review of the overall effectiveness of the services provided.
Results:
We achieved a 76% response rate (n = 31). The data revealed increases in the number of cancer beds in the hospitals, the degree of integration of supportive care services, the availability of complementary services, and the number of pain and palliative care services offered. There was also an overall shift toward centers becoming more patient centered, as 65% reported now having a patient and family advisory council. Our findings revealed a growing trend to offer distress screening for both outpatients and inpatients. Medical and palliative care directors' evaluations of the supportive care services they offered also significantly improved. However, the results revealed an ongoing gap in services for end-of-life care and timely referrals for hospice services.
Significance of results:
Overall, both the quantity and quality of supportive care services in the surveyed NCI-designated cancer centers has improved.
To evaluate the feasibility of implementing psychosocial distress screening in a breast center of a comprehensive cancer center, using a model of structure (personnel, resources), process (screening), and outcome (number of patients screened, number referred).
Methods:
The first step in the project was to establish administrative support, educate and engage breast center staff, identify stakeholders and persons with expertise in the conduct of evidence based initiatives. A two-phase implementation approach was agreed upon with Phase I being screening of new patients in surgical oncology and Phase II being screening women in medical oncology.
Results:
A total of 173 patients were screened. The new patients screened in surgical oncology reported higher average distress scores compared to patients in medical oncology (5.7 vs. 4.0). However, a greater number of patients in medical oncology reported scores >4 compared to the new patients screened in surgery (54% vs. 35%). Psychological distress was the most commonly reported distress for patients in surgery. In contrast, 60% of scores >4 in medical oncology were symptom related, managed by the nurse or physician.
Significance of results:
Nurse led implementation of psychosocial distress screening is feasible, addressing this important quality indicator of patient-centered care.
The purpose of this paper is to summarize the use of the knowledge to action framework for adapting guidelines for practice and the evidence for effective implementation interventions to promote a quality response to cancer distress screening data.
Methods:
We summarize progress in screening implementation in Ontario, Canada and the application of a systematic approach for adapting knowledge to practice and use of evidence-based knowledge translation interventions to ensure the uptake of best practices to manage distress.
Results:
While significant progress has been made in the uptake of distress screening it is less clear if this has resulted in improvements in patient outcomes, i.e., reduced distress. The use of evidence-based knowledge translation strategies tailored to barriers at many levels of care delivery is critical to facilitate the uptake of distress screening data by the primary oncology team.
Significance of results:
There is a wealth of knowledge about the approaches that can be applied to translate knowledge into practice to improve psychosocial care and promote evidence-based distress management by the primary care oncology team. However, further implementation research is needed to advance knowledge about the most effective strategies in the context of cancer care.
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