Supportive Care Pathway Research Articles

Primary Care Support Tools for Digestive Health Care: A Mixed Method Study.

To address the increasing demands for gastroenterology specialty care and increasing wait times, centralized access and triage (CAT) systems, telephone support, and clinical care pathways were implemented to streamline referrals and support management of low-risk gastrointestinal (GI) conditions in the primary care medical home. This study aimed to understand primary care providers (PCPs) and GI specialists' perceptions of these supports, factors that affect support implementation and identify barriers and facilitators for implementing supports from both PCP and GI specialists' perspectives. We conducted a mixed method study including surveys and interviews with PCPs and GI specialists. Online surveys and semistructured qualitative interviews were conducted from July 2022 to September 2022. All interviews were transcribed and coded to perform a thematic analysis. Survey data were analyzed in SPSS version 25. Descriptive statistics were employed to summarize and describe the data collected. Inferential statistics were used to identify associations and relationships within the dataset. T-test and chi-square tests were applied at 95% confidence level, with a p value <0.05 (two-sided) considered statistically significant. A total of 36 PCPs responded to the survey. Most respondents were working full-time (73.5%, n = 25) and were female (73.5%, n = 25). Overall, 42% used the pathways regularly, 48% (n = 16) used them occasionally, and very few (9.1%, n = 3) said they were aware but had not used pathways. Overall, PCPs were satisfied with CAT processes and the use of primary care pathways, recognizing the importance of fair and equitable access to specialty care. Specific processes in CAT for vulnerable populations and patients using walk-in clinics were recognized as a limitation, given the lack of ease in completing the required testing and follow-up needed when utilizing the care pathway. Of the 112 GI specialists who received the survey, 28 (25%) completed it, with males (50.0%, n = 14) and females (39.2%, n = 11), remainder no response. Most participate in CAT (73.9%, n = 17) and were remunerated by an alternative relationship plan (ARP) (53.6%, n = 15). Overall, GIs were satisfied with central triaging and primary care pathways, reducing unnecessary time and resource expenditure for referrals. There were statistically significant differences in perceptions among fee for service and alternative relationship plan GI specialists regarding the effectiveness of CAT in improving access and use of health system resources. Overall, PCPs and GI specialists believe utilizing CAT and primary care pathways improves referral quality, reduces resource expenditure, and provides fair and equitable access to GI specialty services. Improvement in CAT processes with improved pathway awareness may reduce unnecessary referrals.

Institutional end-of-life care policy for inpatients at a tertiary care centre in India: A way forward to provide a system for a dignified death.

India has a high share in the global burden of chronic terminal illnesses. However, there is a lack of a uniform system in providing better end-of-life care (EOLC) for large patients in their terminal stage of life. Institutional policies can be a good alternative as there is no national level policy for EOLC. This article describes the important aspects of the EOLC policy at one of the tertiary care institutes of India. A 15 member institutional committee including representatives from various departments was formed to develop this institutional policy. This policy document is aimed at helping to recognize the potentially non-beneficial or harmful treatments and provide transparency and accountability of the process of limitation of treatment through proper documentation that closely reflects the Indian legal viewpoint on this matter. Four steps are proposed in this direction: (i) recognition of a potentially non-beneficial or harmful treatment by the physicians, (ii) consensus among all the caregivers on a potentially non-beneficial or harmful treatment and initiation of the best supportive care pathway, (iii) initiation of EOLC pathways, and (iv) symptom management and ongoing supportive care till death. The article also focuses on the step-by-step process of formulation of this institutional policy, so that it can work as a blueprint for other institutions of our country to identify the infrastructural needs and resources and to formulate their own policies.

Survival in patients with radiological diagnoses of glioblastoma: a retrospective study of 115 patients on a best supportive care pathway

Abstract Aims Glioblastoma multiforme (GBM) is a devastating disease with notoriously poor survival. Studies examining survival in patients given best supportive care (BSC) are few and far between. All patients harbouring brain tumours referred to the Neuro-oncology service at the Queen Elizabeth Hospital in Birmingham are recorded in the Somerset Cancer Registry. We set out to analyse survival times and identify patient and tumour-related factors significantly affecting prognosis. Method We identified 126 patients from 2015 to 2019 in our Somerset Cancer Registry with radiological diagnoses of glioblastoma for whom the Neuro-oncology MDT recommended BSC. We performed a retrospective analysis of clinical records and radiological images. 11 patients were excluded (8 due to insufficient imaging data, 2 who underwent subsequent surgery, 1 patient with brain metastases). Survival was measured in completed weeks since the index MDT decision. Associations between survival time and both patient- and tumour-related factors were assessed using Kaplan-Meier curves and log-rank tests. All analyses were performed using IBM SPSS 22 (IBM Corp. Armonk, NY), with p&amp;lt;0.05 deemed to be indicative of statistical significance throughout. Results Data were available for N=115 patients (69 males, 46 females), with a mean age of 79 ± 8 years. All patients died within 32 weeks of diagnosis, with a median survival time of 8 weeks. Only 8 patients survived for more than 20 weeks. Survival was significantly shorter in those with a greater number of main cerebral structures affected (p=0.044), with a median of 6 vs. 10 weeks for 3 or more vs. 1 structures affected (hazard ratio: 1.61, 95% CI: 0.99-2.62). Bilateral tumours involving the corpus callosum were also associated with shorter survival (p=0.039). None of the other factors considered were found to be significantly associated with survival, including age (p=0.193), gender (p=0.371), performance status (p=0.300) and tumour size (p=0.331). Conclusion With the exception of the number of main cerebral structures affected (frontal, parietal, temporal and occipital lobes, corpus callosum, insula, basal ganglia and brain stem), patient- and tumour-factors traditionally used by the MDT to prognosticate do not correlate with survival time in patients receiving BSC for radiological diagnoses of GBM. With 50% of the cohort dying within 8 weeks it is clear that we must reconsider the timing of referrals to palliative and hospice care. Finally, the fact that some patients survived for more than half a year with no surgical or oncological treatment suggests that the process of selecting patients for BSC vs aggressive treatments needs refinement.

Recommendations for Age-Appropriate Testing, Timing, and Frequency of Audiologic Monitoring During Childhood Cancer Treatment: An International Society of Paediatric Oncology Supportive Care Consensus Report.

Ototoxicity is an irreversible direct and late effect of certain childhood cancer treatments. Audiologic surveillance during therapy as part of the supportive care pathway enables early detection of hearing loss, decision-making about ongoing cancer treatment, and, when applicable, the timely use of audiologic interventions. Pediatric oncologic clinical practice and treatment trials have tended to be driven by tumor type and tumor-specific working groups. Internationally accepted standardized recommendations for monitoring hearing during treatment have not previously been agreed on. To provide standard recommendations on hearing loss monitoring during childhood cancer therapy for clinical practice. An Ototoxicity Task Force was formed under the umbrella of the International Society of Paediatric Oncology, consisting of international audiologists, otolaryngologists, and leaders in the field of relevant pediatric oncology tumor groups. Consensus meetings conducted by experts were organized, aimed at providing standardized recommendations on age-directed testing, timing, and frequency of monitoring during cancer treatment based on literature and consensus. Consensus statements were prepared by the core group, adapted following several videoconferences, and finally agreed on by the expert panel. The consensus reached was that children who receive ototoxic cancer treatment (platinum agents, cranial irradiation, and/or brain surgery) require a baseline case history, monitoring of their middle ear and inner ear function, and assessment of tinnitus at each audiologic follow-up. As a minimum, age-appropriate testing should be performed before and at the end of treatment. Ideally, audiometry with counseling before each cisplatin cycle should be considered in the context of the individual patient, specific disease, feasibility, and available resources. This is an international multidisciplinary consensus report providing standardized supportive care recommendations on hearing monitoring in children undergoing potentially ototoxic cancer treatment. The recommendations are intended to improve the care of children with cancer and facilitate comparative research on the timing and development of hearing loss caused by different cancer treatment regimens.

Advancing American Kidney Health: Perspective from DaVita, Inc.

Advancing American Kidney Health (AAKH) ([1][1]) has the potential to transform kidney care in America and outlines what the kidney care community has been striving to achieve for decades, as described in the recently released Kidney Care Partners Kidney Care First initiative ([2][2]). This includes

Computerized Clinical Decision Support System for Emergency Department-Initiated Buprenorphine for Opioid Use Disorder: User-Centered Design.

BackgroundEmergency departments (EDs) frequently care for individuals with opioid use disorder (OUD). Buprenorphine (BUP) is an effective treatment option for patients with OUD that can safely be initiated in the ED. At present, BUP is rarely initiated as a part of routine ED care. Clinical decision support (CDS) could accelerate adoption of ED-initiated BUP into routine emergency care.ObjectiveThis study aimed to design and formatively evaluate a user-centered decision support tool for ED initiation of BUP for patients with OUD.MethodsUser-centered design with iterative prototype development was used. Initial observations and interviews identified workflows and information needs. The design team and key stakeholders reviewed prototype designs to ensure accuracy. A total of 5 prototypes were evaluated and iteratively refined based on input from 26 attending and resident physicians.ResultsEarly feedback identified concerns with the initial CDS design: an alert with several screens. The timing of the alert led to quick dismissal without using the tool. User feedback on subsequent iterations informed the development of a flexible tool to support clinicians with varied levels of experience with the intervention by providing both one-click options for direct activation of care pathways and user-activated support for critical decision points. The final design resolved challenging navigation issues through targeted placement, color, and design of the decision support modules and care pathways. In final testing, users expressed that the tool could be easily learned without training and was reasonable for use during routine emergency care.ConclusionsA user-centered design process helped designers to better understand users’ needs for a Web-based clinical decision tool to support ED initiation of BUP for OUD. The process identified varying needs across user experience and familiarity with the protocol, leading to a flexible design supporting both direct care pathways and user-initiated decision support.

A qualitative assessment of the acceptability of hepatitis C remote self-testing and self-sampling amongst people who use drugs in London, UK

BackgroundHepatitis C (HCV) diagnosis and care is a major challenge for people who use illicit drugs, and is characterised by low rates of testing and treatment engagement globally. New approaches to fostering engagement are needed. We explored the acceptability of remote forms of HCV testing including self-testing and self-sampling among people who use drugs in London, UK.MethodsA qualitative rapid assessment was undertaken with people who use drugs and stakeholders in London, UK. Focus groups were held with men who have sex with men engaged in drug use, people who currently inject drugs and people who formerly injected drugs (22 participants across the 3 focus groups). Stakeholders participated in semi-structured interviews (n = 5). We used a thematic analysis to report significant themes in participants’ responses.ResultsWe report an overarching theme of ‘tension’ in how participants responded to the acceptability of remote testing. This tension is evident across four separate sub-themes we explore. First, choice and control, with some valuing the autonomy and privacy remote testing could support. Second, the ease of use of self testing linked to its immediate result and saliva sample was preferred over the delayed result from a self administered blood sample tested in a laboratory. Third, many respondents described the need to embed remote testing within a supportive care pathway. Fourth, were concerns over managing a positive result, and its different meanings, in isolation.ConclusionsThe concept of remote HCV testing is acceptable to some people who use drugs in London, although tensions with lived experience of drug use and health system access limit its relevance. Future development of remote testing must respond to concerns raised in order for acceptable implementation to take place.

Supportive care pathway functionalities of EHR system in a Saudi Arabian hospital

BackgroundElectronic health record (EHR) is a data management system used in healthcare services. The stored medical information in EHR can be accessed and utilized by authorized users, which helps clinicians in making clinical decisions. Therefore, this study aims at comparing the embedded clinical guidelines or the supportive pathway functions as well as their compliance level in the two EMR systems, i.e. QuadraMed (QCPR) and BestCare. MethodsA test vignette was used to evaluate the features, functions, performance, and output to assess the EHR clinical path way functionality of the QCPR and BestCare. The study was based on interview and discussion, followed by actual system testing. ResultsThe results of the evaluation showed that the overall total score of QuadraMed and BESTCare systems supportive care pathway functions were 44.4% and 68.9%, respectively. BestCare is set to replace QCPR in all King Abdulaziz Medical City (KAMCS) hospitals. ConclusionsEmbedding clinical decision support system into EMRs improved clinician performance and facilitated quality of care. However, further investigation of the BESTCare is highly recommended to utilize and fulfill the basic demands of the supportive care pathway functions in King Abdulaziz Medical City (KAMC) hospitals.

Use of a supportive care pathway for end-of-life care in an intensive care unit: a qualitative study.

Providing palliative care support in intensive care settings is beneficial, however, barriers to delivering high-quality end-of-life care remain. To address this, pathways have been used to improve the quality of palliative care in generalist settings. This study describes the views of health professionals using a supportive care pathway in intensive care. Qualitative semi-structured interviews were conducted with ten health professionals working in a surgical intensive care unit. The data were analysed thematically. Participants were positive about the effect of the supportive care pathway on patient care, particularly in enabling consensus in care planning. Some expressed concerns including the difficulty of identifying the 'correct patients' for the pathway, the risk of it becoming a 'self-fulfilling prophecy', and a euphemism for dying. Pathways are one potential mechanism for guiding care planning and communicating the goals of care to colleagues, patients and families, thus contributing to improvements in palliative care.

A QUALITATIVE STUDY EXPLORING THE VIEWS OF INTENSIVE CARE UNIT STAFF ON THE USE OF A SUPPORTIVE CARE PATHWAY TO GUIDE THE CARE OF PATIENTS WHO MAY NOT SURVIVE THEIR ICU ADMISSION

BackgroundThe need to provide quality palliative care within the intensive care unit (ICU) is increasingly recognised. Mortality and morbidity are high, and studies have noted benefits to providing palliative care...

Management Guidelines for Patients Choosing the Renal Supportive Care (RSC) Pathway: Information and Web-based Treatment Protocols Available to All.

Available guidelines fall into 2 categories - medication guides and service provision guides Few guidelines exist for the management of patients choosing to not have dialysis apart from those covering end of life (EOL) management and general ones for the management of chronic kidney disease. Most guidelines are only based on low level evidence, relying on expert opinion or current practice. This limits their usage when advising on matters such as trials of dialysis and caution should be applied when discussing these matters. More data is needed before firmer recommendations can be made. Units in Australia and New Zealand should consider maintaining registers of 'at risk' patients to allow greater input into symptom management and end-of-life support.

PWE-022 Completion rates of palliative chemotherapy are low in patients with oesophago-gastric cancer: results from a national audit

IntroductionPalliative chemotherapy is routinely offered to patients diagnosed with locally advanced or metastatic oesophago-gastric cancer. Based on data from the National Oesophago-Gastric Cancer Audit (NOGCA), we describe the characteristics of...

Exploring the lived experience of palliative care for people with MS 1: A literature review

This article is the first in a series which explores patients′ experiences of palliative care services for moderate-to-advanced multiple sclerosis (MS). This first article comprises a review of the literature on palliative care services for non-cancer patients. Subsequent articles will present research evidence of patients′ experiences of palliative care services for MS. A phenomenological approach is adopted, a method especially suited to studying and understanding people′s experiences of illness andthe care they receive. Such an approach entails a rational and intuitive process, rather than a rigid and restrictive method. The findings of this literature review highlight that people in the advanced stages of MS have a number of unmet needs. Variations were noted in the care received, and palliative care appears to enhance the patient′s experience. A supportive care pathway may reduce variations, by identifying appropriate patients for high quality holistic care. It is recommended that imaginative and innovative solutions are sought to meet the needs of those with advanced disease.

The development of an Integrated Care Pathway for all patients with advanced life-limiting illness ? the Supportive Care Pathway

To describe the development and implementation of an Integrated Care Pathway for all patients with advanced life-limiting illness who have been admitted to hospital. This pathway, called the Supportive Care Pathway, has been developed not only in response to the national drivers to improve end of life care, but also in recognition of local survey data which demonstrated the need for strategies to support the provision of palliative care. The pathway is aimed primarily at generalist staff who may have a significant number of patients with palliative care needs on their wards, though not necessarily yet in the last days of life. The pathway, which is being piloted on three elderly care wards in the West Midlands, has been developed in line with accepted Integrated Care Pathway methodology and is being evaluated using the Integrated Care Pathways Assessment Tool. The pathway has been well received by staff using it and early evaluation of its effect in improving documentation of care is encouraging. Unacceptable variations in care for those nearing the end of life is recognized. It is believed that the use of the Supportive Care Pathway may help to reduce that variation by identifying and supporting patients thought to be in the last year of their life.

Care pathways ? the future's bright

Care pathways ? the future's bright

Clinical Risk Groups (CRGs): a classification system for risk-adjusted capitation-based payment and health care management.

To develop Clinical Risk Groups (CRGs), a claims-based classification system for risk adjustment that assigns each individual to a single mutually exclusive risk group based on historical clinical and demographic characteristics to predict future use of healthcare resources. STUDY DESIGN/DATA SOURCES: We developed CRGs through a highly iterative process of extensive clinical hypothesis generation followed by evaluation and verification with computerized claims-based databases containing inpatient and ambulatory information from 3 sources: a 5% sample of Medicare enrollees for years 1991-1994, a privately insured population enrolled during the same time period, and a Medicaid population with 2 years of data. We created a system of 269 hierarchically ranked, mutually exclusive base-risk groups (Base CRGs) based on the presence of chronic diseases and combinations of chronic diseases. We subdivided Base CRGs by levels of severity of illness to yield a total of 1075 groups. We evaluated the predictive performance of the full CRG model with R2 calculations and obtained values of 11.88 for a Medicare validation data set without adjusting predicted payments for persons who died in the prediction year, and 10.88 with a death adjustment. A concurrent analysis, using diagnostic information from the same year as expenditures, yielded an R2 of 42.75 for 1994. CRGs performance is comparable to other risk adjustment systems. CRGs have the potential to provide risk adjustment for capitated payment systems and management systems that support care pathways and case management.