Oxaliplatin-related dysphagia: Mixed-methods study.

OBJECTIVES: To evaluate participant-reported atypical dysphagia symptoms and their association with oxaliplatin treatment. METHODS: This observational study recruited 73 adults with solid tumours outside the head, neck or upper gastrointestinal tract. All had dysphagia, were in hospital or hospice and were treated by Medical Oncology, Radiation Oncology or Palliative Care. Participants reported their experiences of swallowing difficulties by semistructured interview. Oral Health Assessment Tool was used to ensure swallow difficulties were not due to mucositis. Responses were transcribed and analysed by content analysis. Atypical difficulties were examined for association with oxaliplatin treatment by Fischer's Exact. RESULTS: Oxaliplatin treatment was associated with three unusual dysphagia symptoms: problems with cold or hot bolus (p=0.01), pins and needles (p=0.001) and throat spasm (p=0.035). Carbonation was problematic for one participant. Chemotherapy commencement coincided with swallow problem onset for 67%. Dysphagia symptoms were unrelated to mucositis (p=0.165). CONCLUSIONS: Swallowing difficulties in oxaliplatin-treated patients are atypical and attributable to chemotherapy commencement. Previous research suggests that dysphagia is triggered by cold exposure, but hot and carbonated boluses also caused problems here. Dysphagia symptoms and triggers should be studied more fully to help patients safely enjoy their meals and prevent food avoidance, which could exacerbate malnutrition.

A Mixed Methods Evaluation of a Pilot Multidisciplinary Breathlessness Support Service.

Breathlessness support services have demonstrated benefits for breathlessness mastery, quality of life and psychosocial outcomes for people living with breathlessness. However, these services have predominantly been implemented in hospital and home care contexts. This study aims to evaluate the adaptation and implementation of a hospice-based outpatient Multidisciplinary Breathlessness Support Service (MBSS) in Ireland. A sequential explanatory mixed methods design guided this study. People with chronic breathlessness participated in longitudinal questionnaires (n = 10), medical record audit (n = 14) and a post-discharge interview (n = 8). Caregivers (n = 1) and healthcare professionals involved in referral to (n = 2) and delivery of (n = 3) the MBSS participated in a cross-sectional interview. Quantitative and qualitative data were integrated deductively via the pillar integration process, guided by the RE-AIM framework. Integration of mixed methods data enhanced understanding of factors influencing the reach, adoption, implementation and maintenance of the MBSS, and the potential outcomes that were most meaningful for service users. Potential threats to the sustainability of the MBSS related to potential preconceptions of hospice care, the lack of standardized discharge pathways from the service and access to primary care services to sustain pharmacological interventions. This study suggests that an adapted multidisciplinary breathlessness support intervention is feasible and acceptable in a hospice context. However, to ensure optimal reach and maintenance of the intervention, activities are required to ensure that misconceptions about the setting do not influence willingness to accept referral to MBSS services and integration of services is needed to enable consistency in referral and discharge processes.

Taste and smell abnormalities in advanced cancer: Negative impact on subjective food intake.

BACKGROUND: Taste and smell abnormalities (TSAs) are present in all cancer stages and may contribute to malnutrition. Despite this, they are rarely screened for. This study examined the prevalence and characteristics of TSAs and their influence on subjective food intake in advanced cancer. METHODS: Consecutive patients with advanced cancer were recruited. A modified Taste and Smell Survey assessed subjective TSAs. Objective TSAs were assessed with validated taste strips and "Sniffin Sticks." A six-item food intake questionnaire identified any effect TSAs had on food preferences/aversions. Nutrition status was evaluated with the abridged Patient-Generated Subjective Global Assessment. RESULTS: All 30 participants had either subjective or objective TSAs. The prevalence of TSAs varied based on the assessment tool used. Participants were more aware of taste changes (TCs) than smell changes (SCs). TCs caused reduced food intake in 13 participants. Six reported SCs affected food intake. Food choices caused by TSAs were inconsistent. Some foods preferred because of TSAs were avoided by other participants. None received nutrition counseling on TSA management. Almost all were at malnutrition risk (97%). Almost half (47%) felt TSAs reduced quality of life (QoL). Participants reported "not looking forward to meals" and "can't sit down and eat anything" because of TSAs. CONCLUSION: TSAs were highly prevalent and impactful on food intake. Both TCs and SCs were complex and varied on an individual basis. Despite the effect on health and QoL, no patients received any nutrition counseling on TSA management. Individualized screening and advice are needed for TSAs in advanced cancer.

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.

BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

An exploration of speech and language pathology student and facilitator perspectives on problem-based learning online.

This mixed-methods study explored the perspectives of second and third-year Speech Language Pathology (SLP) students and facilitators on Problem-Based Learning (PBL) online. As a result of the COVID-19 pandemic, PBL was delivered online for the academic year 2020-2021 via a virtual learning environment. Forty-seven students and five facilitators completed an online survey designed to evaluate the quality of individual and collaborative learning in the PBL online context. All participants had experience of pre-COVID-19 face-to-face PBL. Thematic analysis and descriptive statistics were used to analyse qualitative and quantitative data, respectively. Demonstrated a preference from both students and facilitators to maintain PBL in a face-to-face format. Aspects of functionality offered by the virtual platform assisted in the PBL process, however technical and environmental barriers impeded virtual delivery. Responses suggest that the development of rapport and interactivity levels online are not equivalent to face-to-face PBL, and these factors were perceived by participants to negatively influence the learning process. Perspectives on the role of the facilitator online convey divergent views between second and third years which reflected a change in facilitator style to support more independent learning in line with students' progression through the course. Our findings demonstrate that students and facilitators are open to future implementation of a blended model of PBL. Participants reported benefits such as reduction in indirect education costs and acquisition of a digital skillset. However, our study indicates a preference for enhanced social presence afforded by face-to-face PBL.

Dysphagia in Solid Tumors Outside the Head, Neck or Upper GI Tract: Clinical Characteristics.

CONTEXT: Dysphagia is common in cancer, but underlying pathophysiology and manifestations within patients are unknown. OBJECTIVES: To examine dysphagia characteristics in those with solid malignancies outside the head, neck and upper gastrointestinal tract. METHODS: Seventy-three individuals with dysphagia (46 male, 27 female, aged 37-91) were recruited from a parent trial conducted in two acute hospitals and one hospice. Cranial nerve function, Oral Health Assessment Tool (OHAT), Mann Assessment of Swallowing Ability (MASA) and Functional Oral Intake Scale (FOIS) evaluated swallow profile. RESULTS: Only 9/73 (12%) had documented dysphagia prior to study enrollment. MASA risk ratings found n=61/73 (84%) with dysphagia risk and n=22/73 (30%) with aspiration risk. Food texture modification was required for n=34/73 (47%), fluid texture modification for n=1/73 (1%). Compensatory strategies for food were needed by n=13/73 (18%) and for fluids by n=24/73 (33%). Cranial nerve deficits were present in n=43/73 (59%). Oral health problems were common, with xerostomia in two-thirds. Worse dysphagia on MASA was associated with disease progression, affecting hospice, and palliative care the most. Worse performance status was indicative of poorer MASA raw score (P<0.001, OR 2.2, 95% CI 1.5-3.4), greater risk of aspiration (P=0.005, OR 2.1, 95% CI 1.3-3.6) and lower FOIS (P=0.004, OR 2.0, 95% CI 1.2-3.2). CONCLUSION: Dysphagia management in those with cancer requires robust assessment to uncover clinically important needs like food texture modification and safe swallowing advice. Better assessment tools should be developed for this purpose. Oral health problems should be routinely screened in this population since they exacerbate dysphagia.

Dysphagia Prevalence and Predictors in Cancers Outside the Head, Neck, and Upper Gastrointestinal Tract.

CONTEXT: Dysphagia is usually associated with malignancies of the head, neck, and upper gastrointestinal tract but also occurs in those with tumors outside anatomic swallow regions. It can lead to aspiration pneumonia, malnutrition, reduced quality of life, and psychosocial distress. No studies have yet reliably described dysphagia prevalence in those with malignancies outside anatomic swallow regions. OBJECTIVE: The objective of this study was to establish the prevalence and predictors of dysphagia in adults with solid malignancies outside the head, neck, and upper gastrointestinal tract. METHODS: A cross-sectional, observational study using consecutive sampling was conducted. There were 385 participants (mean age 66 ± 12 years) with 21 different primary cancer sites from two acute hospitals and one hospice. Locoregional disease was present in 33%, metastatic in 67%. Dysphagia was screened by empirical questionnaire and confirmed through swallow evaluation. Demographic and clinical predictors were determined by univariate and multivariate binary regression. RESULTS: Dysphagia occurred in 19% of those with malignancies outside anatomic swallow regions. Prevalence was 30% in palliative care and 32% in hospice care. Dysphagia was most strongly associated with cough, nausea, and worse performance status. It was also associated with lower quality of life and nutritional difficulties. CONCLUSION: Dysphagia was common and usually undiagnosed before study participation. It occurred at all disease stages but coincided with functional decline. It may therefore represent a cancer frailty marker. Oncology and palliative care services should routinely screen for this symptom. Timely dysphagia identification and management may improve patient well-being and prevent adverse effects like aspiration pneumonia and weight loss.

Subjective and Objective Assessment of Taste and Smell Sensation in Advanced Cancer.

CONTEXT: Taste and smell abnormalities (TSA) occur throughout the cancer trajectory regardless of cancer primary site and contribute to cancer-associated malnutrition. TSA etiology is poorly understood. Tumor-related inflammation is a possible cause. OBJECTIVE: This study examined the prevalence, characteristics, and severity of TSA in advanced cancer and explored the relationship between TSA and nutritional status. No previous study combined subjective and objective measures for both taste and smell assessment in this population. METHOD: Consecutive advanced cancer hospice patients were recruited. A modified version of the "Taste and Smell Survey" assessed subjective TSA. Validated taste strips and "Sniffin' Sticks" were the objective measures. The abridged patient-generated subjective global assessment evaluated nutritional status. RESULTS: A 93% prevalence of TSA in 30 patients with advanced cancer was identified. When subjective and objective evaluations were combined, 28 had taste abnormalities, 24 smell abnormalities, and 24 both. Taste changes included "persistent bad taste" (n = 18) and changes in how basic tastes were perceived. Half reported smell was not "as strong" as prediagnosis, while more than half (n = 16) had an objective smell abnormality. Most (97%) were at risk of malnutrition. Fatigue, dry mouth, early satiety, and anorexia were common nutrition-impact symptoms. No statistically significant relationship was found between TSA and malnutrition scores. CONCLUSIONS: TSA were highly prevalent. Subjective taste and smell changes did not always accord with objective TSA, suggesting both assessments are valuable. TSA characteristics varied, and particular foods tasted and smelled different and were not enjoyed as before. TSA are common, high-impact problems in advanced cancer.

Caregivers experiences of managing medications for palliative care patients at the end of life: a qualitative study.

Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of "as needed" medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life.

The comparative palliative care needs of those with heart failure and cancer patients.

PURPOSE OF REVIEW: Patients with heart failure seem particularly suited to palliative care having needs that fall within the prototypical palliative care domains. Despite this there is still much debate as to who should respond to these needs and when. RECENT FINDINGS: Since the early 1990s many studies have been published outlining the unmet needs of patients with heart failure. However, there have been limitations to these studies and they have not guided professionals as to how to respond. More recently comparative studies using cancer as the reference have explored similarities and highlighted differences in need between heart failure and cancer patients. These studies are useful for informing future service development. SUMMARY: Patients with heart failure have variable needs and variable disease trajectories. A targeted response to these needs is required. Palliative triggers or transitions should be recognized by professionals caring for patients with heart failure. It is unlikely that either specialist palliative care or medical specialists working in isolation will be sufficiently experienced to respond to these needs. Research is required to determine the effectiveness of different collaborative approaches; heart failure specialist care aligned with palliative care consultancy or heart failure-oriented palliative care services.

A comparative study of the palliative care needs of heart failure and cancer patients.

AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.

Systematic review of the effectiveness of botulinum toxin or radiotherapy for sialorrhea in patients with amyotrophic lateral sclerosis.

Fifty percent of patients with amyotrophic lateral sclerosis (ALS) experience problems handling serous saliva and 20% fail to achieve adequate control of sialorrhea with anticholinergic medications, or experience intolerable adverse effects from these drugs. Both botulinum and radiotherapy have been suggested in the literature as treatments for intractable sialorrhea. In this review, we assess the evidence for the effectiveness and toxicity of botulinum toxin and radiotherapy for sialorrhea in patients with ALS. Relevant studies were retrieved from Medline, Embase and Cochrane Databases. Handsearching of Neurology, Journal of Pain and Symptom Management, and Palliative Medicine and of reference lists, was carried out. Five studies (28 patients) were included in the analysis of botulinum. Of the four studies using an intraglandular method of injection, no adverse effects occurred. Two of these had positive findings of the effect of botulinum in salivary secretion rate and quality of life. In contrast, significant adverse effects were experienced by two patients in a study of retrograde injections into the salivary ducts. Two studies were included in the analysis of radiotherapy (27 patients). Both demonstrated a positive effect of radiotherapy on salivary secretion rate. Some patients experienced mild acute side effects. Because of the small numbers of studies, small sample sizes, and poor quality of reporting, it is not possible to draw firm conclusions. There is some evidence indicating that both botulinum and radiotherapy are well tolerated, effective treatments for persistent sialorrhea in patients with ALS and that the duration of action is up to three months with botulinum and six months with radiotherapy.

Prediction of patient survival by healthcare professionals in a specialist palliative care inpatient unit: a prospective study.

Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted the length of patient survival more than 50% of the time. Nursing and junior medical staff were most accurate while care assistants were least accurate. When in error, senior clinical staff tended to under-estimate survival. Independent mobility on admission was the only variable predictive of length of survival. Thus, professional groups differ in their prognostic accuracy. An awareness of a group's propensity to over- or under-estimate prognosis should be incorporated into future work on prognostication models.

Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers.

BACKGROUND: Specialist palliative care (SPC) services in Ireland are well developed by international standards. However, standardized information on all patients of SPC services is not collected so the proportion of patients seen with a noncancer diagnosis is just an estimate at 5%. AIMS: To describe Irish SPC services' provision for, and attitudes to noncancer patients. METHOD: Postal questionnaire of clinical managers of all SPC services listed in the directory of SPC services in Ireland, September 2005. RESULTS: Sixty-five questionnaires were returned representing a 100% response rate. Twenty four percent (n = 15) of services limited availability for noncancer patients in some way. Of those services available for noncancer patients, the type of care provided to them was the same as for cancer patients in 81% of services (n = 50). The percentage of all patients seen in 2004 who had a noncancer diagnosis was 7.21%. Only 68% (n = 42) of services had a written referral policy. The top three perceived barriers by SPC service providers were the unpredictable noncancer disease trajectory (mean intensity = 6.77), the resultant difficulties with developing referral criteria (mean intensity = 6.38) and the lack of noncancer disease specific expertise (mean intensity = 5.96). DISCUSSION: There is a mismatch between availability of palliative care services for noncancer patients and uptake. The noncancer disease trajectory continues to be considered a barrier to care. Imaginative models of care need to be developed that are not prognosis based.

The pitfalls of a systematic MEDLINE review in palliative medicine: symptom assessment instruments.

The Medical Literature Analysis and Retrieval System Online (MEDLINE) database provides many references for reviews, but many relevant articles are missed, especially when the topic is complex. Reported here is the detailed methodology of a PubMed search of MEDLINE augmented by a related articles link search. Of 1181 citations identified, through a PubMed search, 10 articles met the inclusion criteria. Fifty-one were identified through the related articles link; of which 43 were not detected by standard searches using medical subject heading terms. More than 50% were identified using the related articles link. Only 14% of relevant articles were identified using the standard PubMed MEDLINE search. The related articles link is not included in methodologic recommendations for systematic literature reviews but this experience suggests that it is a useful tool in PubMed for reviewing complex evidence. Related links searches are proposed in any systematic PubMed MEDLINE literature review in palliative medicine.

Paediatric palliative care delivered by an adult palliative care service.

BACKGROUND: In recent years, the discipline of paediatric palliative care has emerged in response to the awareness of the distinct needs of dying children. To date, in Ireland there is no paediatrician trained in palliative medicine, and specialist paediatric palliative care is generally delivered by adult trained teams. AIMS: We wished to examine the experience of an adult palliative care service providing palliative care to children. METHODS: The study entailed three stages: (1) a retrospective chart review of all children referred to the service; (2) a questionnaire survey; and (3) a focus group to explore the views of staff in caring for children. RESULTS: The main themes highlighted were staff competence, staff stress, uncertainty of prognosis, resource implications and co-operation with other teams. CONCLUSION: This study highlights some of the challenges for an adult palliative care team providing paediatric palliative care. Many skills developed for adult patients can be used in paediatric palliative care. Adult palliative care teams and paediatric teams have complementary skills. The challenge is to integrate services to meet the needs of terminally ill children.

Cancer symptom assessment instruments: a systematic review.

PURPOSE: A variety of assessment instruments have been created to identify cancer symptoms. We reviewed systematically cancer symptom assessment instruments published in English. METHODS: A systematic search of the MEDLINE database, Cochrane Library, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and EMBASE was performed. Non-peer-reviewed articles were identified through BIOSIS. Articles were accessed through the related article links in PubMed and references were searched by hand. Studies were included if the instrument had symptom assessment as the primary outcome. Quality-of-life instruments were excluded. RESULTS: We identified 21 instruments; some had undergone modification or validation. An additional 28 studies examined symptom prevalence and interrelations; many involved symptom checklists. Studies varied in design, patient characteristics, symptoms, and outcome. Meta-analysis was not possible due to heterogeneity in design, study outcomes, and validation. Seventy-six articles and two conference abstracts (derived from MEDLINE, Cochrane, CINAHL, EMBASE, BIOSIS, related articles link in PubMed, and search by hand) met inclusion/exclusion criteria. The electronic search (without related links) yielded only 26% of those articles and conference abstracts that met inclusion criteria. Searches by hand of related articles identified 59% of studies. CONCLUSION: Twenty-one instruments were identified as appropriate for clinical use. The instruments vary in symptom content and extent of psychometric validation. Both comprehensive and shorter instruments have been developed, and some instruments are intended for specific symptom assessment or symptoms related to treatment. There is no ideal instrument, and the wide variety of instruments reflects the different settings for symptom assessment. Additional research is necessary.