Development of a Guide to Multidimensional Needs Assessment in the Palliative Care Initial Encounter (MAP).

CONTEXT: Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. OBJECTIVES: To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). METHODS: A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. RESULTS: The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). CONCLUSION: MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.

Severity of Local Skin Reactions with 4% 5-Fluorouracil Plus Emollient versus 4% 5-Fluorouracil Alone in Patients with Actinic Keratosis: A Single-Blind Randomised Trial.

INTRODUCTION: Topical 5-fluorouracil (5-FU)-containing treatments are effective for actinic keratosis (AK); however, they frequently lead to transient local skin reactions (LSRs), which often result in treatment non-adherence. METHODS: The aim of this international, phase IV clinical trial was to investigate whether addition of an emollient to topical 4% 5-FU would reduce the frequency and severity of LSRs over 4 weeks of treatment (intervention group) compared with 4% 5-FU alone (control group) in patients with AK. The primary objective was to assess the severity of LSRs (i.e. erythema, flaking/scaling, crusting, swelling, vesiculation/pustulation and erosion/ulceration) at week 4 of treatment (or before, in case of a major local reaction). Key secondary objectives were LSR total scores at weeks 2 and 8, the scores of individual LSR items at each visit, and the proportions of patients with 100% and ≥ 75% AK lesion clearance at week 8. RESULTS: In total, 141 patients were included in the efficacy analysis (71 in the intervention group and 70 in the control group). There were no statistically or clinically significant differences between the treatment groups in terms of LSR total score at week 4 (overall and by subgroups defined by the number of lesions and patient age at baseline), scores of individual LSR items at any time point, and AK lesion clearance rates at week 8. LSR scores with topical 4% 5-FU alone were lower than expected. Skin reactions were the most common treatment-emergent adverse events in both groups, leading to treatment discontinuation in nine patients (12.3%) in the intervention group and seven (9.9%) in the control group. No new safety signals were observed with the addition of an emollient to 4% 5-FU. CONCLUSIONS: Daily emollient applications during the 4-week treatment course did not impact the safety and efficacy profile of 4% 5-FU.

Art Therapy in Advanced Cancer. A Mapping Review of the Evidence.

PURPOSE OF REVIEW: The benefits of arts in improving well-being in end-of-life patients have been stated by the WHO. To inspire clinical practice and future research, we performed a mapping review of the current evidence on the effectiveness of art therapy interventions in stage III and IV cancer patients and their relatives. RECENT FINDINGS: We identified 14 studies. Benefits reported by the authors were grouped as improved emotional and spiritual condition, symptom relief, perception of well-being, satisfaction, and helpfulness. As a body of evidence, notable limitations were observed: Only 1 study was a randomized controlled trial (RCT), and there was heterogeneity in the interventions and outcome measures. This mapping review highlights the evidence available on the effectiveness of art therapy in advanced cancer, which remains limited and presents specific challenges. It also provides a visual representation of the reported benefits, encouraging further and more rigorous investigation.

Impact of Early Referral to Palliative Care in Patients with Interstitial Lung Disease.

Background: Interstitial lung diseases (ILDs) have a major impact on survival and quality of life but only a small percentage of patients are referred for palliative care (PC). Objective: To assess the impact of early PC referral on hospital admissions, emergency department visits, and place of death in the last year of life. Design: This is a single-center retrospective observational study. Setting/Subjects: Subjects were patients with ILDs who attended the respiratory department of Hospital Santa Creu i Sant Pau (Barcelona, Spain) between 2011 and 2019. Results: Of the 51 included patients, 45% received early PC referral. Logistic regression indicated that early PC referral was independently associated with a lower risk of hospital admissions in the last year of life (OR = 0.16; 95% CI 0.03-0.75; p = 0.02) and a lower risk of dying in hospital (OR = 0.11; 95% CI 0.02-0.5; p = 0.009). Conclusion: Early PC referral reduces the need for hospitalization and enables domiciliary death.

Art Therapy in a Palliative Care Unit: Symptom Relief and Perceived Helpfulness in Patients and Their Relatives.

CONTEXT: Creative arts therapies aim to expand conventional palliative care interventions by making clinical care more holistic. OBJECTIVES: The objective of the present study was to evaluate the benefits of an art therapy intervention in a tertiary hospital palliative care unit, directly in adult cancer inpatients and indirectly in their relatives. METHODS: We evaluated the intensity of pain, anxiety, depression, and well-being using the Edmonton Symptom Assessment Scale before and after the first, third, and fifth art therapy sessions. After the third and fifth sessions, perceived helpfulness was assessed via a questionnaire developed by the palliative care team, combining open-ended questions and a checklist. We categorized the narrative data into three predetermined types: generally helpful (some positive experience), helpfulness related to a dyadic relationship (patient-art therapist), and helpfulness related to a triadic relationship (patient-image-art therapist). RESULTS: We observed a significant reduction in anxiety, depression, and pain as well as a significant increase in well-being at each of the time points evaluated. Ninety-eight percent of the patients considered the art therapy helpful, which could be categorized as generally helpful in 54.8%, related to a triadic relationship in 32.9%, and to a dyadic relationship in 12.3%. Relatives gave similar opinions regarding the effects on patients and, in addition, reported an indirect helpful effect for themselves. The most frequently selected experiences from the checklist were feeling calm, being entertained, and expressing and communicating emotions. CONCLUSION: This art therapy intervention was beneficial in reducing symptom intensity. Almost all the participants directly or indirectly involved in the creative art process considered it helpful. They reported a wide variety of sensory, emotional, cognitive, and spiritual experiences.

Management Pearls on the Treatment of Actinic Keratoses and Field Cancerization.

Field cancerization (FC) is a chronic disease involving multiple clinical and subclinical actinic keratoses (AK) on large photo-exposed surfaces with multifocal areas of dysplasia and precancerous changes. Patients and treatment must be properly monitored and managed to avoid aggravation and progression of the disease. Management of actinic keratoses includes lesion-directed treatments, such as cryotherapy and field-directed therapies. Field-directed therapies may have the potential to address subclinical damage, reduce AK recurrence rates and potentially reduce the risk of squamous cell carcinoma development. Multiple studies have demonstrated the efficacy of field-directed treatments, including 5-fluorouracil, photodynamic therapy, imiquimod, chemical exfoliation with trichloroacetic acid and diclofenac gel, for multiple AK and FC. The choice of therapy should be based on multiple factors, such as efficacy, tolerability, patient risk profile, costs and cosmetic results. Management of AK includes not only treatment but also prevention. Medical devices, such as sunscreens containing liposome-encapsulated DNA repair enzymes, can repair DNA damage associated with chronic UV radiation and reduce the number of new AK lesions. Here we provide therapeutic pearls and expert opinions on the treatment of AK and FC (as monotherapy or in combination) with the overall aim to achieve better, faster, and well-tolerated clinical responses.

Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol.

INTRODUCTION: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

Palliative Care Needs in an Acute Internal Medicine Ward in Mexico.

BACKGROUND: Palliative care is an evolving but underdeveloped practice in Mexico. OBJECTIVE: The primary end point of this prospective observational study was to identify internal medicine inpatients fulfilling advanced criteria within a second-level hospital. Secondary end points were symptom burden, treatment, resource utilization, and one-year survival. DESIGN AND MEASUREMENTS: The 390-sample size calculation was based on previous studies where 15% of inpatients fulfilled palliative care needs. Consecutive admissions were assessed to identify patients with any of the following: cancer, cardiac, renal, hepatic insufficiency, COPD, AIDS, stroke, or fragility until sample size was completed. After obtaining informed consent, interview to patient, attending physician, and chart review was completed to identify any of the following advanced disease criteria in each patient: (1) Surprise question to attending physician of the possibility of the patient dying in the following year, (2) Palliative Performance Scale (PPS) <50, and (3) Advanced disease specific criteria. Interview also included presence of symptoms, functional capacity, and previous resource utilization. Treatment offered was analyzed only on day of admission. One-year follow-up to assess survival was done through the state death certificates. RESULTS: Out of 390 patients, 131 (34%) had any of the diseases studied. Out of 131 patients, 86 (66%) had at least one of the three inclusion criteria for advanced disease. Out of 86 patients, 70 (81%) advanced disease patients died after one-year follow-up. Comparison between patients with no advanced disease (no criteria) versus advanced disease (at least one criteria) showed a significant difference in mean PPS, nutrition status, survival days, inhospital death, weight loss, dependency on activities of daily living, and previous multiple emergency room visits. Advanced disease patients with no death at one year follow-up had significantly more new admissions to that hospital. CONCLUSIONS: The number of patients requiring palliative care in internal medicine wards may be excessive to the current palliative care structures available.

A nodule on the scalp as the first sign of extranodal disease in medullary thyroid carcinoma.

Medullary carcinoma of the thyroid gland accounts for only 5-10% of thyroid carcinomas. Also, metastases to the skin of malignant tumors are infrequently (2-9% of patients). In the case herein reported in a 64-year old woman, a metastatic nodule on the scalp was the presenting clinical manifestation of a medullary thyroid carcinoma. A comprehensive review of the literature was conducted for similar cases using PubMed. Only 18 cases of cutaneous metastases of medullary thyroid carcinoma have been previously reported in the literature, but skin lesions were the presenting complaint of the thyroid neoplasm in only three.

Síndrome neuroléptico maligno asociado a quetiapina tras retirada de olanzapina y donepezilo, con EEG con diagnóstico diferencial para enfermedad de Creutzfeldt-Jakob / Neuroleptic malignant syndrome associated with quetiapine after withdrawal of olanzapine and donepezil, with EEG differential diagnosis of Creutzfeldt-Jakob disease

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Spirituality in patients with advanced illness: The role of symptom control, resilience and social network.

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by palliative care teams. Statistically significant correlations were found between some dimensions of spirituality and poor symptomatic control, resiliency, and social support. In the structural model, three variables predicted spirituality: having physical symptoms as the main source of discomfort, resiliency, and social support. This work highlights the relevance of the relationships among spirituality and other aspects of the patient at the end of life.

Palliative Care Professionals' Inner Life: Exploring the Relationships Among Awareness, Self-Care, and Compassion Satisfaction and Fatigue, Burnout, and Coping With Death.

CONTEXT: Professionals working in the landscape of death and dying frequently are exposed to existential issues, psychological challenges, and emotional distress associated with care at the end of life. Identifying factors that help professionals cope with frequent exposure to issues related to mortality could enhance palliative care providers' and patients' quality of life. OBJECTIVES: To improve our understanding of the factors associated with professionals' inner life, through the assessment of an adapted version of Kearney and Kearney's awareness model of self-care. The main assumptions of the study were that competence in coping with death and awareness would be positively related to compassion satisfaction and negatively to compassion fatigue and burnout; moreover, participating in a specific training program aimed at facing suffering and death, and self-care would positively predict coping with death. METHODS: A cross-sectional online survey of Spanish palliative care professionals was conducted through the member e-mail list of the Spanish Society of Palliative Care. A total of 387 professionals completed the survey, which included demographic data, and personal and professional scales on the mentioned constructs. RESULTS: Data fit reasonably well with the estimated model. Whereas the hypothesis relating spiritual training to coping with death was not supported by the data, all other aspects of the hypotheses were supported, namely self-care and awareness positively predicted professionals' competence in coping with death, and this, together with awareness, positively predicted compassion satisfaction and negatively predict compassion fatigue and burnout. CONCLUSION: The awareness-based model of self-care was successfully tested in a multidisciplinary sample of Spanish palliative care professionals. This research applies a quantitative evaluation of the model, providing evidence of a constellation of key variables for health professionals' quality of life, such as specific training, self-care, awareness and coping with death competency.

Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care.

OBJECTIVE: We aimed to address the prevalence of desire-to-die statements (DDSs) among terminally ill cancer patients in an acute palliative care unit. We also intended to compare the underlying differences between those patients who make desire-to-die comments (DDCs) and those who make desire-for-euthanasia comments (EUCs). METHOD: We conducted a one-year cross-sectional prospective study in all patients receiving palliative care who had made a DDC or EUC. At inclusion, we evaluated symptom intensity, anxiety and depression, and conducted a semistructured interview regarding the reasons for these comments. RESULTS: Of the 701 patients attended to during the study period, 69 (9.8%; IC 95% 7.7-12.3) made a DDS: 51 (7.3%) a DDC, and 18 (2.5%) an EUC. Using Edmonton Symptom Assessment Scale (ESAS) DDC group showed higher percentage of moderate-severe symptoms (ESAS > 4) for well-being (91 vs. 25%; p = 0.001), depression (67 vs. 25%; p = 0.055), and anxiety (52 vs. 13%; p = 0.060) than EUC group. EUC patients also considered themselves less spiritual (44 vs. 84%; p = 0.034). The single most common reason for a DDS was pain or physical suffering, though most of the reasons given were nonphysical. SIGNIFICANCE OF RESULTS: Almost 10% of the population receiving specific oncological palliative care made a DDC (7.3%) or EUC (2.5%). The worst well-being score was lower in the EUC group. The reasons for both a DDC and EUC were mainly nonphysical. We find that emotional and spiritual issues should be identified and effectively addressed when responding to a DDS in terminally ill cancer patients.

Development and validation of a new tool for the assessment and spiritual care of palliative care patients.

CONTEXT: Spiritual assessment tools and interventions based on holistic approaches are needed to promote healing. Such tools must be adapted to the wide cultural backgrounds of contemporary Western society. OBJECTIVES: To develop and validate a new brief measure, simultaneously featuring clinical applicability and adequate psychometric properties. The tool uses six initial questions to establish a climate of trust with patients before they complete an eight-item, five-point Likert scale. The questionnaire is based on a model of spirituality generated by the Spanish Society of Palliative Care (SECPAL) Task Force on Spiritual Care (Grupo de Espiritualidad de la SECPAL), which aims to recognize, share, and assess the spiritual resources and needs of palliative care patients. METHODS: Multidisciplinary professionals from 15 palliative care teams across Spain interviewed 108 patients using the Grupo de Espiritualidad de la SECPAL questionnaire. Confirmatory factor analysis techniques were used to study the new tool factor structure and reliability. Additionally, concurrent criterion validity coefficients were estimated considering spiritual well-being, anxiety, depression, resilience, and symptoms. Descriptive statistics on questionnaire applicability were reported. RESULTS: Analyses supported a three-factor structure (intrapersonal, interpersonal, transpersonal) with an underlying second-order factor representing a spirituality construct. Adequate reliability results and evidence for construct validity were obtained. CONCLUSION: The new questionnaire, based on empirical research and bedside experience, showed good psychometric properties and clinical applicability.

Multicentre, double-blind, randomised placebo-controlled clinical trial on the efficacy of methylphenidate on depressive symptoms in advanced cancer patients.

INTRODUCTION: Methylphenidate is a psychostimulant that has been used to relieve depressive symptoms in advanced cancer patients. No studies compare its efficacy against placebo in this group of patients. OBJECTIVE: To explore the efficacy of methylphenidate compared with placebo in the relief of depressive symptoms in advanced cancer patients. MATERIAL AND METHODS: A multicentre, double-blind, randomised placebo-controlled clinical trial was undertaken comparing the efficacy of methylphenidate and placebo in depressive symptoms. Advanced stage cancer patients were eligible if they scored at least two points on the Two Question Screening Survey for depression. A reduction of at least two points on the Edmonton Symptom Assessment Scale for depression (0-10) was considered as a response. RESULTS: Sixty-nine patients were included (methylphenidate: n=31, placebo: n=38); median daily dose of methylphenidate was 25 mg. Fifty-eight patients (84%) who completed the first week of treatment were considered suitable for evaluation. In the intention to treat analysis, there were 14/31 (45%) responses with methylphenidate and 10/38 (26%) responses with placebo (difference: 19%; 95% CI: 4% to 39%; p=0.10). With the Hospital Anxiety and Depression Scale, 11/19 (58%) patients with methylphenidate and 10/24 (42%) with placebo improved from a score compatible with depression in the first 7 days (difference 16%; 95% CI 13% to 42%; p=0.29). The proportion of patients indicating adverse effects was similar for both cohorts (p=0.99). CONCLUSION: Compared with the placebo, methylphenidate demonstrated a positive trend in the incidence of response for depressive symptoms in advanced cancer patients.

Non-invasive interventions for improving well-being and quality of life in patients with lung cancer.

BACKGROUND: This is an updated version of the original review published in Issue 4, 2004 of The Cochrane Library. Lung cancer is one of the leading causes of death globally. Despite advances in treatment, the outlook for the majority of patients remains grim and most face a pessimistic future accompanied by sometimes devastating effects on emotional and psychological health. Although chemotherapy is accepted as an effective treatment for advanced lung cancer, the high prevalence of treatment-related side effects as well the symptoms of disease progression highlight the need for high-quality palliative and supportive care to minimise symptom distress and to promote quality of life. OBJECTIVES: To assess the effectiveness of non-invasive interventions delivered by healthcare professionals in improving symptoms, psychological functioning and quality of life in patients with lung cancer. SEARCH STRATEGY: We ran a search in February 2011 to update the original completed review. We searched the Cochrane Central Register of Controlled Trials (The Cochrane Library 2011, Issue 2), MEDLINE (accessed through PubMed), EMBASE, PsycINFO, AMED, British Nursing Index and Archive (accessed through Ovid) and reference lists of relevant articles; we also contacted authors. SELECTION CRITERIA: Randomised or quasi-randomised clinical trials assessing the effects of non-invasive interventions in improving well-being and quality of life in patients diagnosed with lung cancer. DATA COLLECTION AND ANALYSIS: Two authors independently assessed relevant studies for inclusion. Data extraction and risk of bias assessment of relevant studies was performed by one author and checked by a second author. MAIN RESULTS: Fifteen trials were included, six of which were added in this update. Three trials of a nursing intervention to manage breathlessness showed benefit in terms of symptom experience, performance status and emotional functioning. Four trials assessed structured nursing programmes and found positive effects on delay in clinical deterioration, dependency and symptom distress, and improvements in emotional functioning and satisfaction with care.Three trials assessed the effect of different psychotherapeutic, psychosocial and educational interventions in patients with lung cancer. One trial assessing counselling showed benefit for some emotional components of the illness but findings were not conclusive. One trial examined the effects of coaching sensory self monitoring and reporting on pain-related variables and found that although coaching increases the amount of pain data communicated to providers by patients with lung cancer, the magnitude of the effect is small and does not lead to improved efficacy of analgesics prescribed for each patient's pain level. One trial compared telephone-based sessions of either caregiver-assisted coping skills training (CST) or education/support involving the caregiver and found that patients in both treatment conditions showed improvements in pain, depression, quality of life and self efficacy.Two trials assessed exercise programmes; one found a beneficial effect on self empowerment and the other study showed an increase in quadriceps strength but no significant changes for any measure of quality of life. One trial of nutritional interventions found positive effects for increasing energy intake, but no improvement in quality of life. Two small trials of reflexology showed some positive but short-lasting effects on anxiety and pain intensity.The main limitations of the studies included were the variability of the interventions assessed and the approaches to measuring the considered outcomes, and the lack of data reported in the trials regarding allocation of patients to treatment groups and blinding. AUTHORS' CONCLUSIONS: Nurse follow-up programmes and interventions to manage breathlessness may produce beneficial effects. Counselling may help patients cope more effectively with emotional symptoms, but the evidence is not conclusive. Other psychotherapeutic, psychosocial and educational interventions can play some role in improving patients' quality of life. Exercise programmes and nutritional interventions have not shown relevant and lasting improvements of quality of life. Reflexology may have some beneficial effects in the short term.

Quality improvement in palliative care services and networks: preliminary results of a benchmarking process in Catalonia, Spain.

BACKGROUND: A wide range of palliative care services has been implemented in Catalonia over the past 20 years. Quantitative and qualitative differences in the organization of palliative care services between districts and settings can result in wide variability in the quality of these services, and their accessibility. METHODS: We implemented a benchmark methodology to compare dimensions of care and organization, to identify aspects requiring improvement, and to establish indicators to measure progress. The overall aim was to generate a consensus document for submission to the Department of Health (DoH) of the Government of Catalonia. RESULTS: A Steering Committee convoked a meeting in Barcelona (Catalonia, Spain) and representatives (n = 114) of all the 37 districts within our health care remit (rural, urban, intermediate, and metropolitan) and settings of the health care system (hospitals, social health centers, community, and nursing homes) attended and took part in plenary sessions and workshops to define areas that, in their experience, were considered weak. Twenty-one consensus recommendations achieving high levels of consensus were generated for submission to the DoH. These included the formal definition of the model of care and organization of palliative care services at all levels in the region, the implementation of measures for improvement in different settings and scenarios, systems for continuous care, and facilities for the continuing training of health care personnel. These proposals have since been implemented in a trial region and, depending on the outcomes, will be applied throughout our health service. CONCLUSION: We conclude that benchmark methodology is valuable in acquiring data for use in improving palliative care organization for patients' benefit.

Diseño, implementación y evaluación de programas públicos de cuidados paliativos / Design, implementation and evaluation of palliative care public health programs

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