Dry mouth in patients with a life-limiting condition or frailty: a study protocol for two intervention studies and a nested qualitative sub-study (the Dry mOuth Project, DROP).

BACKGROUND: Despite its prevalent and impactful nature, dry mouth remains an underexposed and undertreated symptom in patients with a life-limiting condition or frailty. The main contributing factors are a lack of awareness and knowledge amongst both healthcare professionals and patients, and a scarcity of effective, evidence-based interventions. In the DRy mOuth Project (DROP), we address these factors by investigating both a non-pharmacological and a pharmacological intervention: a nurse-led patient education program and locally applied pilocarpine. METHODS: This intervention-based research project consists of two parallel studies. The non-pharmacological study is a cluster non-randomized controlled trial in 228 palliative nursing home and hospital patients, investigating the effect of structured use of guidelines and of patient education on dry mouth symptoms. This intervention, a nurse-led patient education program (the Mouth Education Program, MEP), will be compared to care as usual, the control. The pharmacological study is a double-blind placebo-controlled randomized trial that examines the effect of locally applied pilocarpine drops in 120 patients with dry mouth symptoms. Both studies use the same mixed-methods study design, in which the primary outcome is the clinical response to the intervention at 4 weeks, as measured by a dry mouth severity score (numeric rating scale from 0 to 10). Other outcomes, as measured by questionnaires over a 12-week follow-up period, include durability of the effect, impact on quality of life and, adherence and acceptability of the intervention. In addition, the feasibility and cost-effectiveness are evaluated by means of questionnaires and focus groups with healthcare professionals, and interviews with patients. DISCUSSION: This study investigates the effectiveness and feasibility of two interventions for dry mouth symptoms in patients with life-limiting conditions or frailty. Due to the large-scale and mixed-method nature of the study, this study will also improve our understanding of dry mouth and its relating factors and of the patients' and healthcare professionals' experiences with symptoms, care and guidelines of dry mouth, including any perceived barriers and facilitators. TRIAL REGISTRATION: NCT05964959 & NCT05506137.

Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study.

OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

A simple risk score list can be used to predict the occurrence of delirium in patients admitted to inpatient hospice care: A medical record study.

OBJECTIVE: This study aimed to examine whether the 10-item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner. METHODS: This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C-statistic. RESULTS: In total, 240 patients were included. Median age at admission was 78 (IQR 70-84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87-5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C-statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values. CONCLUSION: Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy.

Association between Inappropriate End-of-Life Cancer Care and Specialist Palliative Care: A Retrospective Observational Study in Two Acute Care Hospitals.

A substantial number of patients with life-threatening illnesses like cancer receive inappropriate end-of-life care. Improving their quality of end-of-life care is a priority for patients and their families and for public health. To investigate the association between provision, timing, and initial setting of hospital-based specialist palliative care and potentially inappropriate end-of-life care for patients with cancer in two acute care hospitals in the Netherlands, we conducted a retrospective observational study using hospital administrative databases. All adults diagnosed with or treated for cancer in the year preceding their death in 2018 or 2019 were included. The main exposure was hospital-based specialist palliative care initiated >30 days before death. The outcome measures in the last 30 days of life were six quality indicators for inappropriate end-of-life care (≥2 ED-visits, ≥2 hospital admissions, >14 days hospitalization, ICU-admission, chemotherapy, hospital death). We identified 2603 deceased patients, of whom 14% (n = 359) received specialist palliative care >30 days before death (exposure group). Overall, 27% (n = 690) received potentially inappropriate end-of-life care: 19% in the exposure group, versus 28% in the non-exposure group (p < 0.001). The exposure group was 45% less likely to receive potentially inappropriate end-of-life care (AOR 0.55; 95% CI 0.41 to 0.73). Early (>90 days) and late (≤90 and >30 days) initiation of specialist palliative care, as well as outpatient and inpatient initiation, were all associated with less potentially inappropriate end-of-life care (AOR 0.49; 0.62; 0.32; 0.64, respectively). Thus, timely access to hospital-based specialist palliative care is associated with less potentially inappropriate end-of-life care for patients with cancer. The outpatient initiation of specialist palliative care seems to enhance this result.

Randomized controlled study of pain education in patients receiving radiotherapy for painful bone metastases.

BACKGROUND: Although short-course radiotherapy is an effective treatment for patients with painful bone metastases, pain is not always sufficiently controlled. We therefore investigated the additional effect of a nurse-led pain education program on pain control and quality of life (QoL). PATIENTS AND METHODS: In this multicenter study, patients with solid tumor bone metastases and a worst pain intensity of ≥5 on a 0-10 numeric rating scale (NRS) were randomized between care as usual (control-group) and care as usual plus the Pain Education Program (PEP-group). PEP consisted of a structured interview and personalized education with follow-up phone calls. Patients completed the Brief Pain Inventory, EORTC QLQ-C15-PAL and BM22 at week 0, 1, 4, 8 and 12. The primary outcome was pain control, defined as the number of patients whose worst pain intensity was <5 on a 0-10 NRS after 12 weeks. Secondary outcomes were time to reach control of pain (NRS < 5), mean worst pain and average pain, and QoL at weeks 1, 4, 8 and 12. RESULTS: Of 308 included patients, 182 (92 PEP-group) completed 12 weeks follow-up. At 12 weeks, more patients in the PEP-group (71%) compared to the control-group (52%) reported pain control (P =.008). In the PEP-group, pain control was reached earlier than in the control-group (median 29 days versus 56 days; P =.003). Mean worst and average pain decreased in both groups but decreased more in the PEP-group. QoL did not differ between the groups. CONCLUSION: The addition of PEP to care as usual for patients treated with radiotherapy for painful bone metastases resulted in less pain and faster pain control.

The self-perceived palliative care barriers and educational needs of clinicians working in hospital primary care teams and referral patterns: lessons learned from a single-center survey and cohort study.

BACKGROUND: Within the generalist-plus-specialist palliative care model, palliative care is mainly provided by nurses and physicians of hospital primary care teams. Palliative care consultation teams (PCCTs) support these clinicians in adequately caring for patients with advanced illnesses. Our team started in 2012. The aim of this study was to assess the self-perceived barriers, educational needs and awareness of available palliative care support options among our hospital primary care teams. In addition, palliative care referral patterns were evaluated. METHODS: Single-center mixed methods study. Outcomes of two surveys of primary care team clinicians (2012 and 2016) on barriers to palliative care, educational needs and awareness of palliative care support options were compared (chi-square, Mann-Whitney U tests, qualitative analysis). Palliative care referral characteristics were evaluated (2012-2017), including referral timing (survival since referral) (descriptive statistics, Kaplan-Meier methodology). Predictions of survival at referral were analyzed (weighted Kappa). RESULTS: In 2012 and 2016, the most frequently reported barrier was the late initiation of the palliative care approach. Clinicians reported a need for education on physical symptom management and basic palliative care principles. Awareness of support options increased from 2012 to 2016, including improved familiarity with the PCCT (56% vs. 85%, P<0.001) and positive appraisal of the team (8% vs. 40% gave an 'excellent' rating, P<0.001). The use of national symptom management guidelines also improved (23% vs. 53%, P<0.001). Of 1,404 referrals, 86% were for cancer patients. Referrals increased by 28% (mean) per year. Medical oncology clinicians referred most frequently (27%) and increasingly early in the disease trajectory (survival ≥3 months after referral) (P=0.016). Median survival after referral was 0.9 (range, 0-83.3) months. Referring physicians overestimated survival in 44% of patients (kappa 0.36, 95% CI: 0.30-0.42). CONCLUSIONS: Primary care team clinicians persistently reported needing support with basic palliative care skills. PCCTs should continuously focus on educating primary care teams and promoting the use of guidelines. Because physicians tend to overestimate survival and usually referred patients late for specialist palliative care, consultation teams should support primary care teams to identify, treat and refer patients with palliative care needs in a timely manner.

Surprise Question and Performance Status Indicate Urgency of Palliative Care Needs in Patients with Advanced Cancer at the Emergency Department: An Observational Cohort Study.

Background: The surprise question (SQ), "Would I be surprised if this patient died within one year?", is a simple instrument to identify patients with palliative care needs. The SQ-performance has not been evaluated in patients with advanced cancer visiting the emergency department (ED). Objective: To evaluate SQ's test characteristics and predictive value in patients with advanced cancer visiting the ED. Design: Observational cohort study. Setting: Patients >18 years with advanced cancer in the palliative phase visiting the ED of an academic medical center. Methods: Attending physicians answered the SQ (not surprised [NS] or surprised [S]) and estimated Eastern Cooperative Oncology Group (ECOG)-performance status. Disease, visit, and follow-up characteristics were retrospectively collected from charts. SQ's sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV), and Harrell's c-index were calculated. Prognostic values of SQ and other variables were assessed by using Cox proportional hazards models. Results: Two-hundred-and-forty-five patients were included (203 NS [83%] and 42 S [17%]), median age 62 years, 48% male. Follow-up on overall survival was updated until February 2019. At ED entry, NS-patients had worse ECOG-performance and more symptoms. At study closure, 233 patients had died (95%). Median survival was three months for NS-patients (interquartile [IQ]-range: 1-8); nine months for S-patients (IQ-range: 3-28) (p < 0.0001). SQ-performance for one-year mortality: sensitivity 89%, specificity 40%, PPV 85%, NPV 50%, c-index 0.56, and hazard ratio 2.1 for approaching death. ECOG 3-4 predicted death in NS-patients; addition to the SQ improved c-index (0.65); sensitivity (40%), specificity (92%), PPV (95%), and NPV (29%). Conclusions: At the ED, the SQ plus ECOG 3-4 helps identifying patients with advanced cancer and a limited life expectancy. Its use supports initiating appropriate care related to urgency of palliative care needs.

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach.

PURPOSE: Patients with hematological malignancies (HM) have more unpredictable disease trajectories compared to patients with advanced solid tumors (STs) and miss opportunities for a palliative care approach. They often undergo intensive disease-directed treatments until the end of life with frequent emergency department (ED) visits and in-hospital deaths. Insight into end-of-life trajectories and quality of end-of-life care can support arranging appropriate care according to patients' wishes. METHOD: Mortality follow-back study to compare of end-of-life trajectories of HM and ST patients who died <3 months after their ED visit. Five indicators based on Earle et al. for quality of end-of-life care were assessed: intensive anticancer treatment <3 months, ED visits <6 months, in-hospital death, death in the intensive care unit (ICU), and in-hospice death. RESULTS: We included 78 HM patients and 420 ST patients, with a median age of 63 years; 35% had Eastern Cooperative Oncology Group performance status 3-4. At the ED, common symptoms were dyspnea (22%), pain (18%), and fever (11%). After ED visit, 91% of HM patients versus 76% of ST patients were hospitalized (P = .001). Median survival was 17 days (95% confidence interval [CI]: 15-19): 15 days in HM patients (95% CI: 10-20) versus 18 days in ST patients (95% CI: 15-21), P = .028. Compared to ST patients, HM patients more often died in hospital (68% vs 30%, P < .0001) and in the ICU or ED (30% vs 3%, P < .0001). CONCLUSION: Because end-of-life care is more aggressive in HM patients compared to ST patients, a proactive integrated care approach with early start of palliative care alongside curative care is warranted. Timely discussions with patients and family about advance care planning and end-of-life choices can avoid inappropriate care at the end of life.

Nursing intervention for fatigue during the treatment for cancer.

Cancer-related fatigue (CRF) is a common symptom in patients treated for cancer. For patients receiving chemotherapy, the prevalence is 75% to 90%; in those receiving radiation, 65%. The management of CRF is difficult because its nature is not yet fully explained and it has a variety of causes. The purpose of the review is to identify interventions that can be used by nurses successfully to reduce fatigue during cancer treatment. A search of the medical (PubMed) and nursing (CINAHL) literature (1995 to February 2005) produced 18 studies. In two-thirds of the studies, the populations were breast cancer patients. Half of the studies had a sample size of less then 30 patients. The studies included dealt with sleep promotion (1), instruction and education (5), exercise (10), and distraction and relaxation (2). Significant effects were found in studies promoting exercise. For interventions on sleep promotion and on education and counseling, a positive result was found, but this was not significant. For distraction and relaxation, only an effect until a few hours after the intervention was found. Given the multidimensional nature of CRF, a combination of interventions is most likely to be effective. Thus far, such an approach by nurses during cancer treatment has not been tested.