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.

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.

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.