The Online Representation of Palliative Care by Practice, Policy, and Advocacy Organizations: Definitional Variations and Discursive Tensions

Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organizations. Discrepancies were found in the way palliative care was defined in relation to curative, end-of-life, terminal, and supportive care. Beyond these definitional variations, meaning was generated through the representation of palliative care as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of palliative care is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public.

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve.

Delays in Care Associated With Non–English-Speaking Patients With Breast Cancer

Background: Breast cancer care requires coordination between multiple diagnostic and treatment modalities. Disparities such as age, race/ethnicity, and socioeconomic status are associated with delays in care. This study investigates whether primary language is associated with delays in breast cancer diagnosis and treatment before and through radiotherapy (RT). Patients and Methods: This study was an institutional retrospective matched-cohort analysis of women treated with breast RT over 2 years. A total of 65 non–English-speaking (NES) patients were matched with 195 English-speaking (ES) patients according to stage, age, and chemotherapy delivery. Key time intervals along the breast cancer care path from initial findings through RT were recorded. Data were analyzed in a mixed model with matching as the random effect. The impact of race and insurance status was analyzed in addition to language. Results: Significant delays were found for NES patients, which varied by race. NES Latina patients experienced the longest delay, with a mean total care-path time of 13.53 months (from initial findings to end of RT) versus 8.18 months for all ES patients (P<.0001). Specifically, their mean total care-path time was 5.97 months longer than that of ES Latina patients (P=.001) and 5.80 months longer than that of ES White patients (P<.0001). In addition, NES Latina patients had a significantly longer total care-path time than NES patients of other races/ethnicities (P=.001). Delays were specifically seen between initial clinical or radiographic findings and diagnostic mammogram (P=.001) and between biopsy and resection (P=.044). Beyond language, race/ethnicity was itself associated with delays between resection and start of RT (P=.032) and between start and end of RT (P=.022). Conclusions: Language is associated with pre-RT delays in breast cancer care, especially for NES Latina patients. Delays are most pronounced before diagnostic mammograms, but they also exist before resection and RT. Future work should target NES patients to assist their progress along the care path.

Estimating the Effect of the New York State Nurse Practitioners Modernization Act on Care Received by Medicaid Patients

The demand for primary care services may surpass the supply of primary care providers, exacerbating challenges with access, quality, and cost in the U.S. health care system. Expanding the supply of, and access to, nurse practitioner (NP) care has been proposed as one method to alleviate these challenges. New York State (NYS) changed its regulatory environment for NPs in 2015. We estimate the impact of expanded NP scope of practice (SOP) regulations in NYS on total care days received by Medicaid beneficiaries from 2015 to 2018 using a model derived from national historical data from 1999 to 2011. We used a longitudinal data policy analysis framework and a generalized difference-in-differences model to identify the effect of changes in NP SOP regulations on total care days. The model included controls for state income and unemployment rates. Our results suggest that the policy change increased total care days provided to patients, but that this difference was not statistically significant and became negligible after computing the number of days per beneficiary. In addition, our results suggest that had NYS moved to a full practice environment, more care days could have been provided to Medicaid patients, and this difference was found to be statistically significant. Our results suggest that states should adopt full NP SOP practice environments to realize measurable benefits of expanded NP SOP.

Validation of a German translation of the CARE questionnaire and its implementation as electronic PROM to assess patient-reported postoperative convalescence and recovery after major urological surgery

Purpose To validate a German translation of the convalescence and recovery evaluation (CARE) as an electronic patient-reported outcome measure (ePROM) and use it to assess recovery after major urological surgery. Methods The CARE questionnaire was provided to patients scheduled for major urological surgery preoperatively, at discharge and 6 weeks postoperatively, using an ePROM system. Cronbach’s alpha, inter-scale correlations and confirmatory factor analysis (CFA) were used to validate the translation. Mixed linear regression models were used to identify factors influencing CARE results, and a multivariable logistic regression analysis was done to determine the predictive value of CARE results on quality of life (QoL). Results A total of 283 patients undergoing prostatectomy (n = 146, 51%), partial/radical nephrectomy (n = 70, 25%) or cystectomy (n = 67, 24%) responded to the survey. Internal consistency was high (α = 0.649–0.920) and the CFA showed a factor loading > 0.5 in 17/27 items. Significant main effects were found for the time of survey and type of surgery, while a time by type interaction was only found for the gastrointestinal subscale ($$\chi_{(4)}^{2}$$ χ ( 4 ) 2 = 30.37, p < 0.0001) and the total CARE score (TCS) ($$\chi_{(4)}^{2}$$ χ ( 4 ) 2 = 13.47, p = 0.009) for cystectomy patients, meaning a greater score decrease at discharge and lower level of recovery at follow-up. Complications demonstrated a significant negative effect on the TCS ($$\chi_{(2)}^{2}$$ χ ( 2 ) 2 = 8.61, p = 0.014). A high TCS at discharge was an independent predictor of a high QLQ-C30 QoL score at follow-up (OR = 5.26, 95%-CI 1.42–19.37, p = 0.013). Conclusion This German translation of the CARE can serve as a valid ePROM to measure recovery and predict QoL after major urological surgery.

Penatalaksanaan Karies Rampan dengan Evaluasi Menggunakan Kariogram: Laporan Kasus pada Anak dengan Self-Mutilation

To date, rampant caries has still a high prevalence. Evaluation of caries can be carried out comprehensively in patients with rampant caries by using a cariogram which can describe the causes and risks of caries. We reported a case of a girl aged 4 years, complaining of swelling of the back part of her lower gum. The patient was diagnosed as self-mutilation by a pediatrician. There were some scars in her left forefinger and wrist. Moreover, her teeth 51, 61, 72, 71, and 81 were loose. Clinical examination revealed poor oral hygiene, abscesses in the teeth 74 and 75, and many dental caries as well as tooth radixes. The patients had bottle feeding until the age of 3 years. Cariogram was performed at the first visit, followed by dental health education (DHE) and topical application of fluoride. Cariogram evaluation was carried out at the first visit, the 3rd month, and the 6th month, resulting in 15%, 19%, and 35% in prediction of preventing new caries, respectively. The patient was treated with cariogram follow-up, total care with block system, DHE, and topical application of fluoride. In this case, there was an increased prediction of caries prevention, and a decreased caries risk factors including diet and bacteria.Keywords: rampant caries, cariogram, caries management Abstrak: Sampai saat ini karies rampan masih memiliki prevalensi yang tinggi. Penilaian karies dilakukan secara komprehensif pada pasien dengan karies rampan dengan menggunakan kariogram yang dapat menggambarkan penyebab dan urutan risiko karies. Kami melaporkan kasus seorang anak perempuan berusia 4 tahun dengan keluhan gusi belakang kiri bawah bengkak. Pasien didiagnosis oleh dokter spesialis anak menderita self mutilation. Terdapat bekas luka pada jari telunjuk kiri, pergelangan tangan, dan gigi 51, 61, 72, 71, 81 sudah tanggal. Pemeriksaan klinis menunjukkan oral hygene buruk dengan abses pada gigi 74 dan 75, banyak terdapat karies dan radiks. Pasien memiliki kebiasaan minum susu botol dengan dot sampai usia 3 tahun. Kariogram dilakukan pada kunjungan awal, diikuti edukasi kesehatan gigi dan mulut (DHE) dan pemberian topikal aplikasi fluor (TAF). Evaluasi dengan menggunakan kariogram dilakukan pada awal kunjungan, bulan ketiga dan bulan keenam dengan hasil kemungkinan menghindari karies baru sebesar 15%, 19% dan 35% secara berturut. Penatalaksanaan kasus ini ialah dengan follow-up kariogram, total care dengan sistem blok, DHE, dan TAF. Pada kasus ini terjadi peningkatan kemungkinan menghindari karies baru yang cukup tinggi dan terjadi penurunan besarnya faktor risiko karies pada faktor pola diet dan bakteri.Kata kunci: karies rampan, kariogram, penatalakasanaan