Utilization of a primary care-based cancer survivorship clinic: patterns and patient characteristics.

PURPOSE: The Johns Hopkins Primary Care for Cancer Survivors (PCCS) Clinic was established in 2015 to improve care delivery for the growing cancer survivor population. We aim to describe areas of care addressed by PCCS and factors associated with clinic utilization. METHODS: We conducted a retrospective chart review of the first 301 patients' clinic visits. We used negative binomial regression models to identify factors associated with the rate of PCCS clinic visits overall and for cancer surveillance and treatment-related effects. RESULTS: There were 1702 clinic visits across 301 patients during the study period (77% female, median age 61). The most common areas of care addressed were chronic medical problems (80%), preventive health care (62%), cancer surveillance (59%), treatment-related effects (50%), and new/acute problems (46%). Multivariate analyses found that age > 60 years (IRR = 1.9, 95% CI = 1.2-3.0, p = 0.007) and higher number of comorbidities (IRR = 1.2, 95% CI = 1.1 - 1.2, p < 0.001) were associated with more overall PCCS visits, while female gender was associated with fewer visits (IRR = 0.6, CI = 0.4 - 0.8, p = 0.001). Gastrointestinal cancer type, shorter length of survivorship, male gender, and higher number of comorbidities were associated with a higher rate of visits addressing both surveillance and treatment-related effects (p < 0.05). CONCLUSIONS: The PCCS clinic addressed cancer and non-cancer related needs. Older patients and survivors with more comorbidities had significantly increased clinic utilization. IMPLICATIONS FOR CANCER SURVIVORS: As the cancer survivor population grows, increasing access to survivorship clinics based in primary care may help meet these patients' diverse oncologic and general health needs.

Optimizing cancer survivorship in primary care: patient experiences from the Johns Hopkins Primary Care for Cancer Survivors clinic.

PURPOSE: The optimal delivery of survivorship care, particularly within primary care, remains poorly understood. We established the Johns Hopkins Primary Care for Cancer Survivors (PCCS) clinic in 2015 to address care challenges unique to cancer survivors. To better understand the care from the PCCS clinic, we interviewed patients about their perception of care delivery, survivorship care, and care coordination. METHODS: We conducted semi-structured interviews with adult survivors of any cancer type seen in the PCCS clinic. A priori and in vivo coding of verbatim transcripts was part of the thematic analysis. RESULTS: Seventeen cancer survivors were interviewed (ages 37-78). Themes that emerged were (1) optimal care and (2) the PCCS experience. Subthemes respectively included the ideal role of the primary care provider (1), telehealth/COVID-19 challenges and opportunities (1), patient-derived value from the PCCS clinic (2), and improving the PCCS model (2). Overall, PCCS patients expected and experienced high-quality, comprehensive primary care by providers with cancer survivorship expertise. Patients reported telehealth benefits and challenges for survivorship care during the COVID-19 pandemic. CONCLUSIONS: PCCS patients perceived receiving high-quality primary care and valued being seen in a primary care-based survivorship clinic. The PCCS clinic can serve as a model of primary care-based cancer survivorship. IMPLICATIONS FOR CANCER SURVIVORS: Ideal primary care provider roles and care coordination are important factors for high-quality survivorship care and can be provided by a specialized cancer survivorship clinic in primary care.

The use of natural language processing in palliative care research: A scoping review.

BACKGROUND: Natural language processing has been increasingly used in palliative care research over the last 5 years for its versatility and accuracy. AIM: To evaluate and characterize natural language processing use in palliative care research, including the most commonly used natural language processing software and computational methods, data sources, trends in natural language processing use over time, and palliative care topics addressed. DESIGN: A scoping review using the framework by Arksey and O'Malley and the updated recommendations proposed by Levac et al. was conducted. SOURCES: PubMed, Web of Science, Embase, Scopus, and IEEE Xplore databases were searched for palliative care studies that utilized natural language processing tools. Data on study characteristics and natural language processing instruments used were collected and relevant palliative care topics were identified. RESULTS: 197 relevant references were identified. Of these, 82 were included after full-text review. Studies were published in 48 different journals from 2007 to 2022. The average sample size was 21,541 (median 435). Thirty-two different natural language processing software and 33 machine-learning methods were identified. Nine main sources for data processing and 15 main palliative care topics across the included studies were identified. The most frequent topic was mortality and prognosis prediction. We also identified a trend where natural language processing was frequently used in analyzing clinical serious illness conversations extracted from audio recordings. CONCLUSIONS: We found 82 papers on palliative care using natural language processing methods for a wide-range of topics and sources of data that could expand the use of this methodology. We encourage researchers to consider incorporating this cutting-edge research methodology in future studies to improve published palliative care data.

Appetite and quality of life in amyotrophic lateral sclerosis: A scoping review.

Loss of appetite is related to undesirable loss of weight in amyotrophic lateral sclerosis (ALS) and affects up to two thirds of people with this disease. Little is known about the instruments used to measure appetite loss, its impact on quality of life (QoL), or strategies used to improve loss of appetite. In this study we aim to characterize the existing literature on the symptom of appetite loss in ALS through a systematic scoping review following the framework by Arksey and O'Malley and PRISMA guidelines. Studies assessing appetite in people with ALS (pALS) published in English and indexed on Web of Science, PubMed, and Scopus databases were included. A total of 156 full references were identified, of which 10 articles met the inclusion criteria and were eligible for data synthesis after screening. Seven unique instruments were used to assess appetite across the included studies, most commonly the Council of Nutrition Appetite Questionnaire. No studies included a subjective assessment of appetite loss. A total of 12 unique potential associated factors across five studies were identified. QoL was measured in seven studies using nine different QoL measurement tools. Few studies measure appetite in pALS and there is no consensus on the assessment tool used. Few studies evaluated the impact of appetite as a symptom on QoL. Furthermore, the heterogeneity of outcomes and risk factors of the existing data limit the clinical application of these findings. Future studies are needed to guide clinical management and interventions for people with ALS and appetite loss.