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1.
Palliat Med ; 38(2): 200-212, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38229018

RESUMEN

BACKGROUND: Posttraumatic growth refers to positive psychological change following trauma. However, there is a need to better understand the experience of posttraumatic growth in the palliative care setting as well as the availability and efficacy of interventions that target this phenomenon. AIMS: To provide a review of the prevalence, characteristics and interventions involving posttraumatic growth in adults receiving palliative care and to collate recommendations for future development and utilisation of interventions promoting posttraumatic growth. DESIGN: We performed a systematic scoping review of studies investigating posttraumatic growth in palliative care settings using the Arksey and O'Malley six-step scoping review criteria. We used the PRISMA guidelines for scoping reviews. DATA SOURCES: Articles in all languages available on Ovid Medline [1946-2022], Embase [1947-2022], APA PsycINFO [1947-2022] and CINAHL [1981-2022] in November 2022. RESULTS: Of 2167 articles located, 17 were included for review. These reported that most people report low to moderate levels of posttraumatic growth with a decline towards end-of-life as distress and symptom burden increase. Associations include a relationship between posttraumatic growth, acceptance and greater quality-of-life. A limited number of interventions have been evaluated and found to foster posttraumatic growth and promote significant psychological growth. CONCLUSION: Posttraumatic growth is an emerging concept in palliative care where although the number of studies is small, early indications suggest that interventions fostering posttraumatic growth may contribute to improvements in psychological wellbeing in people receiving palliative care.


Asunto(s)
Cuidados Paliativos , Crecimiento Psicológico Postraumático , Adulto , Humanos , Prevalencia , Calidad de Vida/psicología
2.
Support Care Cancer ; 30(5): 3995-4005, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35064330

RESUMEN

CONTEXT: Pain management in palliative care remains inadequate; the development of innovative therapeutic options is needed. OBJECTIVES: To determine the feasibility and preliminary effectiveness for larger randomised controlled trials of 3D head-mounted (HMD) virtual reality (VR) for managing cancer pain (CP) in adults. METHODS: Thirteen people receiving palliative care participated in a single-session randomised cross-over trial, after which they completed a qualitative semi-structured interview. We also compared the effects of 3D HMD VR and 2D screen applications on CP intensity and levels of perceived presence. Feasibility was assessed with recruitment, completion rates and time required to recruit target sample. RESULTS: Although recruitment was slow, completion rate was high (93%). Participants reported that the intervention was acceptable and caused few side effects. Although participants reported significantly reduced CP intensity after 3D HMD VR (1.9 ± 1.8, P = .003) and 2D screen applications (1.5 ± 1.6, P = .007), no significant differences were found between interventions (-.38 ± 1.2, 95% CI: -1.1-.29, P = .23). Participants reported significantly higher levels of presence with the 3D HMD VR compared to 2D screen (60.7 ± SD 12.4 versus 34.3 ± SD 17.1, mean 95% CI: 16.4-40.7, P = .001). Increased presence was associated with significantly lower pain intensity (mean 95% CI: -.04--0.01, P = 0.02). CONCLUSIONS: Our preliminary findings support growing evidence that both 3D and 2D virtual applications provide pain relief for people receiving palliative care. Given the relative lack of cybersickness and increasing access to portable VR, we suggest that larger clinical studies are warranted.


Asunto(s)
Dolor en Cáncer , Neoplasias , Realidad Virtual , Adulto , Dolor en Cáncer/terapia , Estudios Cruzados , Estudios de Factibilidad , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Cuidados Paliativos
3.
Support Care Cancer ; 26(8): 2769-2784, 2018 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-29502155

RESUMEN

CONTEXT: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. OBJECTIVES: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients. METHODS: Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis. RESULTS: Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient's cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians' practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship). CONCLUSIONS: Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.


Asunto(s)
Cuidados Paliativos/normas , Médicos/normas , Investigación Cualitativa , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad
4.
Palliat Support Care ; 15(2): 231-241, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-27320847

RESUMEN

OBJECTIVE: People with a life-limiting physical illness experience high rates of significant psychological and psychiatric morbidity. Nevertheless, psychiatrists often report feeling ill-equipped to respond to the psychiatric needs of this population. Our aim was to explore psychiatry trainees' views and educational needs regarding the care of patients with a life-limiting physical illness. METHOD: Using semistructured interviews, participants' opinions were sought on the role of psychiatrists in the care of patients with a life-limiting illness and their caregivers, the challenges faced within the role, and the educational needs involved in providing care for these patients. Interviews were audiotaped, fully transcribed, and then subjected to thematic analysis. RESULTS: A total of 17 psychiatry trainees were recruited through two large psychiatry training networks in New South Wales, Australia. There were contrasting views on the role of psychiatry in life-limiting illness. Some reported that a humanistic, supportive approach including elements of psychotherapy was helpful, even in the absence of a recognizable mental disorder. Those who reported a more biological and clinical stance (with a reliance on pharmacotherapy) tended to have a nihilistic view of psychiatric intervention in this setting. Trainees generally felt ill-prepared to talk to dying patients and felt there was an educational "famine" in this area of psychiatry. They expressed a desire for more training and thought that increased mentorship and case-based learning, including input from palliative care clinicians, would be most helpful. SIGNIFICANCE OF RESULTS: Participants generally feel unprepared to care for patients with a life-limiting physical illness and have contrasting views on the role of psychiatry in this setting. Targeted education is required for psychiatry trainees in order to equip them to care for these patients.


Asunto(s)
Cuidados Paliativos/métodos , Rol del Médico , Psiquiatría/métodos , Estudiantes de Medicina/psicología , Adulto , Actitud del Personal de Salud , Curriculum/normas , Educación de Postgrado en Medicina/métodos , Educación de Postgrado en Medicina/normas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Nueva Gales del Sur , Cuidados Paliativos/psicología , Investigación Cualitativa
5.
Support Care Cancer ; 24(3): 1373-86, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26341520

RESUMEN

PURPOSE: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. METHODS: Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. RESULTS: Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. CONCLUSION: Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.


Asunto(s)
Neoplasias/psicología , Cuidados Paliativos/psicología , Anciano , Femenino , Humanos , Masculino , Autocuidado
6.
Support Care Cancer ; 24(3): 1209-18, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26294320

RESUMEN

PURPOSE: In brain tumours, brain metastases or advanced cancer; treatment with corticosteroids, side effects can add to symptoms. These are best assessed by patients, complementing clinical assessment. We assessed the feasibility and validity of the Dexamethasone Symptom Questionnaire-Chronic (DSQ-Chronic), patient and caregiver versions. METHODS: A longitudinal cohort study was conducted, collecting clinician-rated toxicity, performance status, dexamethasone dose and DSQ-Chronic (patient and caregiver versions) at baseline, then 2, 4 and 8 weeks later. Patients had a primary malignant brain tumour, brain metastases, or advanced cancer; Karnofsky Performance Status ≥40 and predicted survival ≥8 weeks. Analysis included questionnaire completion rates, frequency and severity of dexamethasone-attributable side effects, agreement between patient and caregiver ratings, comparison with clinician-rated toxicity and correlation with performance status. RESULTS: Sixty-six patients were recruited (mean age 60 years), with their caregivers. Completion of questionnaires was over 90% for the dyad at baseline but dropped over time, with caregiver completion rates higher at all timepoints. Agreement between patients and proxies was fair to moderate, and while proxies systematically overestimated symptom severity on DSQ-chronic total scores, the bias was less than 10 points. Patient and clinician agreement was higher for more objective symptoms. CONCLUSION: The DSQ-Chronic is feasible when the patient is relatively well. As capacity to complete the DSQ-Chronic diminishes, caregivers can be proxy-raters. Clinicians capture corticosteroid toxicities, which may not be obvious to the patient. The DSQ-Chronic, patient and caregiver versions, are useful tools to be used with clinician assessment.


Asunto(s)
Cuidadores , Dexametasona/efectos adversos , Glucocorticoides/efectos adversos , Autoinforme , Encuestas y Cuestionarios , Adulto , Anciano , Anciano de 80 o más Años , Sesgo , Neoplasias Encefálicas/tratamiento farmacológico , Estudios de Cohortes , Dexametasona/uso terapéutico , Femenino , Glioma/tratamiento farmacológico , Glucocorticoides/uso terapéutico , Humanos , Hipertensión Intracraneal/tratamiento farmacológico , Estado de Ejecución de Karnofsky , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Apoderado , Resultado del Tratamiento
7.
Heliyon ; 10(7): e29193, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38623224

RESUMEN

Purpose: To evaluate effects of aerobic and resistance exercises for cancer-related pain in adults with and surviving cancer. Secondary objectives were to a) evaluate the effect of exercise on fatigue, psychological function, physical function, b) assess fidelity to exercise. Design: A systematic search of MEDLINE, EMBASE, AMED, CINAHL and Cochrane Central Register of Controlled Trials was conducted to identify randomised controlled trials (RCTs) comparing aerobic and/or resistance exercise to control groups. The primary endpoint were changes in cancer-related pain intensity from baseline to post intervention. Meta-regression analysis evaluated predictors for heterogeneity between study findings. Tolerability was defined as reporting of exercise-induced adverse events while fidelity evaluated by reported intervention dropout. Results: Twenty-three RCTs including 1954 patients (age 58 ± 8.5 years; 78 % women); 1087 (56 %) and 867 (44 %) allocated to aerobic/resistance exercise therapy and control group, respectively. Exercise therapy was associated with small to moderate decreases in cancer-related pain compared to controls (SMD = 0.38, 95 % CI: 0.17, 0.58). Although there was significant heterogeneity between individual and pooled study effects (Q = 205.25, p < 0.0001), there was no publication bias. Meta-regression including supervision, age, duration and exercise type as moderators showed no significant differences in reported outcomes. Analysis of secondary outcomes revealed a moderate effect for improvements in physical function, fatigue and psychological symptoms. Conclusions: Aerobic and resistance exercises are tolerable and effective adjunct therapies to reduce cancer-related pain while also improving physical function, fatigue and mood. Future RCTs of dose, frequency, compliance and exercise type in specific cancer settings are required.

8.
Front Psychiatry ; 14: 1091771, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37255681

RESUMEN

Objectives: To identify predictors of mortality in people with active and challenging behavioral and psychological symptoms of dementia (BPSD). Design: A retrospective case-control study was designed to compare those referred to Dementia Support Australia (DSA) who died in the 12 months to November 2016, with an equal number of controls who did not die. An audit tool was designed after literature review and expert opinion from the service. Odds ratio calculations and the Mann-Whitney U test were used to assess for difference. Setting: Residents of Australian residential aged care facilities with BPSD referred to the DSA service. Participants: Of 476 patients referred to DSA during the study period, 44 died. 44 controls were randomly selected from those remaining matched for age and sex. Results: Significant differences included higher rates of benzodiazepine use, drowsiness, delirium, reduced oral intake and discussions about goals of care in those who died. Those who died were referred to the service for a shorter period and had more frequent contact between DSA and nurses at the nursing homes. Increase in opioid use and loss of skin integrity in those who died approached significance. The overall end of life course demonstrated a complex set of needs with frequent delirium, pain and frailty. Conclusion: Further study is required to determine the optimal care for those with BPSD at the end of their lives. This study would indicate complex end of life care needs and point to a role for palliative care support.

9.
Health Soc Care Community ; 30(6): e5588-e5601, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-36068671

RESUMEN

Access to high-quality and safe evidence-based palliative care (PC) is important to ensure good end-of-life care for older people in residential aged care homes (RACHs). However, many barriers to providing PC in RACHs are frequently cited. The Quality End-of-Life Care (QEoLC) Project was a multicomponent intervention that included training, evidence-based tools and tele-mentoring, aiming to equip healthcare professionals and careworkers in RACHs with knowledge, skills and confidence in providing PC to residents. This study aims to understand: (1) the experiences of healthcare professionals, careworkers, care managers, planners/implementers who participated in the implementation of the QEoLC Project; and (2) the barriers and facilitators to the implementation. Staff from two RACHs in New South Wales, Australia were recruited between September to November 2021. Semi-structured interviews and thematic data analysis were used. Fifteen participants (seven health professionals [includes one nurse, two clinical educators, three workplace trainers, one clinical manager/nurse], three careworkers and five managers) were interviewed. Most RACH participants agreed that the QEoLC Project increased their awareness of PC and provided them with the skills/confidence to openly discuss death and dying. Participants perceived that the components of the QEoLC Project had the following benefits for residents: more appropriate use of medications, initiation of timely pain management and discussions with families regarding end-of-life care preferences. Key facilitators for implementation were the role of champions, the role of the steering committee, regular clinical meetings to discuss at-risk residents and mentoring. Implementation barriers included: high staff turnover, COVID-19 pandemic, time constraints, perceived absence of executive sponsorship, lack of practical support and systems-related barriers. The findings underline the need for strong leadership, supportive organisational culture and commitment to the implementation of processes for improving the quality of end-of-life care. Furthermore, the results highlight the need for codesigning the intervention with RACHs, provision of dedicated staff/resources to support implementation, and integration of project tools with existing systems for achieving effective implementation outcomes.


Asunto(s)
COVID-19 , Cuidado Terminal , Humanos , Anciano , Pandemias , Australia , Cuidados Paliativos , Casas de Salud
10.
JAMA Netw Open ; 5(2): e220060, 2022 02 01.
Artículo en Inglés | MEDLINE | ID: mdl-35188554

RESUMEN

Importance: An evidence-practice gap exists for cancer pain management, and cancer pain remains prevalent and disabling. Objectives: To evaluate the capacity of 3 cancer pain guideline implementation strategies to improve pain-related outcomes for patients attending oncology and palliative care outpatient services. Design, Setting, and Participants: A pragmatic, stepped wedge, cluster-randomized, nonblinded, clinical trial was conducted between 2014 and 2019. The clusters were cancer centers in Australia providing oncology and palliative care outpatient clinics. Participants included a consecutive cohort of adult outpatients with advanced cancer and a worst pain severity score of 2 or more out of 10 on a numeric rating scale (NRS). Data were collected between August 2015 and May 2019. Data were analyzed July to October 2019 and reanalyzed November to December 2021. Interventions: Guideline implementation strategies at the cluster, health professional, and patient levels introduced with the support of a clinical champion. Main Outcomes and Measures: The primary measure of effect was the percentage of participants initially screened as having moderate to severe worst pain (NRS ≥ 5) who experienced a clinically important improvement of 30% or more 1 week later. Secondary outcomes included mean average pain, patient empowerment, fidelity to the intervention, and quality of life and were measured in all participants with a pain score of 2 or more 10 at weeks 1, 2, and 4. Results: Of 8099 patients screened at 6 clusters, 1564 were eligible, and 359 were recruited during the control phase (mean [SD] age, 64.2 [12.1] years; 196 men [55%]) and 329 during the intervention phase (mean [SD] age, 63.6 [12.7] years; 155 men [47%]), with no significant differences between phases on baseline measures. The mean (SD) baseline worst pain scores were 5.0 (2.6) and 4.9 (2.6) for control and intervention phases, respectively. The mean (SD) baseline average pain scores were 3.5 (2.1) for both groups. For the primary outcome, the proportions of participants with a 30% or greater reduction in a pain score of 5 or more of 10 at baseline were similar in the control and intervention phases (31 of 280 participants [11.9%] vs 30 of 264 participants [11.8%]; OR, 1.12; 95% CI, 0.79-1.60; P = .51). No significant differences were found in secondary outcomes between phases. Fidelity to the intervention was low. Conclusions and Relevance: A suite of implementation strategies was insufficient to improve pain-related outcomes for outpatients with cancer-related pain. Further evaluation is needed to determine the required clinical resources needed to enable wide-scale uptake of the fundamental elements of cancer pain care. Ongoing quality improvement activities should be supported to improve sustainability.


Asunto(s)
Atención Ambulatoria , Dolor en Cáncer , Manejo del Dolor , Anciano , Australia , Dolor en Cáncer/diagnóstico , Dolor en Cáncer/epidemiología , Dolor en Cáncer/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Manejo del Dolor/métodos , Manejo del Dolor/estadística & datos numéricos , Resultado del Tratamiento
11.
Patient Educ Couns ; 100(11): 2088-2094, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-28619270

RESUMEN

OBJECTIVE: There is a limited understanding of symptom meaning and its significance to clinical practice within symptom experience literature. This study aims to qualitatively explore the ways in which symptom meanings are discussed by patients and responded to by palliative care physicians during consultations. METHODS: Framework analysis was conducted with 40 palliative care consultation transcripts. RESULTS: 55% of consultations discussed symptom meaning. Six themes regarding patients' symptom meanings emerged while four themes conveyed physicians' responses to these utterances. Key symptom meanings included symptoms representing diminished function and uncertainty about symptom cause or future. Physicians usually gave scientific medical responses concerning symptom cause and treatment, versus reassurance or empathy. CONCLUSION: This study has provided greater insight into the different symptom meanings that exist for palliative care patients. Physicians' responses highlight their reliance on medical information when patients are distressed. Future studies should explore the impact of different responses on patient outcomes, and health practitioners' views about optimal responses. PRACTICE IMPLICATIONS: Physicians could explore symptom meanings with their patients, looking out for those identified here. Apart from information-giving and treatment, active listening to these concerns as they present in consultations may help improve the therapeutic relationship and better guide optimal care.


Asunto(s)
Comunicación , Cuidados Paliativos , Relaciones Médico-Paciente , Anciano , Femenino , Humanos , Masculino , Investigación Cualitativa , Derivación y Consulta
12.
BMJ Support Palliat Care ; 6(3): 323-30, 2016 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-26908535

RESUMEN

INTRODUCTION: Real-world effectiveness of many medications has been poorly researched, including in hospice/palliative care. Directly extrapolating findings from other clinical settings may not yield robust clinical advice. Pharmacovigilance studies provide an opportunity to understand better the net impact of medications. The study aimed to examine immediate and short-term benefits and harms of pregabalin in routine practice for neuropathic pain in hospice/palliative care. METHODS: A consecutive cohort of 155 patients from 62 centres in 5 countries was started on pregabalin and studied prospectively. Data were collected at three time points: baseline; day 7 (immediate, short-term harms); ad hoc reports of any harms ≤21 days; and day 21 (short-term benefits). RESULTS: Median dose for 155 patients at day 21 was 150 mg/24 h. Benefits were reported by 61 patients (39%), of whom 11 (7%) experienced complete pain resolution. Harms were reported by 51 (35%) patients at or before 7 days, the most frequent of which were somnolence, fatigue, cognitive disturbance and dizziness. 10 patients (6%) ceased pregabalin due to harms, but 82 patients (53%) were being treated at 21 days. In regression modelling, people with worse baseline pain derived more benefit (OR=8.5 (95% CI 2.5 to 28.68). CONCLUSIONS: Pregabalin delivered benefit to many patients, with 4 of 10 experiencing pain reductions by 21 days. Harms, occurring in 1 in 3 patients, may be difficult to detect in clinical practice, as they mostly involve worsening of symptoms prevalent at baseline.


Asunto(s)
Analgésicos/uso terapéutico , Cuidados Paliativos al Final de la Vida/métodos , Neuralgia/tratamiento farmacológico , Cuidados Paliativos/métodos , Farmacovigilancia , Pregabalina/uso terapéutico , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Resultado del Tratamiento , Adulto Joven
13.
J Pain Symptom Manage ; 51(4): 706-717.e5, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26732731

RESUMEN

CONTEXT: Managing symptom clusters or multiple concurrent symptoms in patients with advanced cancer remains a clinical challenge. The optimal processes constituting effective management of symptom clusters remain uncertain. OBJECTIVES: To describe the attitudes and strategies of clinicians in managing multiple co-occurring symptoms in patients with advanced cancer. METHODS: Semistructured interviews were conducted with 48 clinicians (palliative care physicians [n = 10], oncologists [n = 6], general practitioners [n = 6], nurses [n = 12], and allied health providers [n = 14]), purposively recruited from two acute hospitals, two palliative care centers, and four community general practices in Sydney, Australia. Transcripts were analyzed using thematic analysis and adapted grounded theory. RESULTS: Six themes were identified: uncertainty in decision making (inadequacy of scientific evidence, relying on experiential knowledge, and pressure to optimize care); attunement to patient and family (sensitivity to multiple cues, prioritizing individual preferences, addressing psychosocial and physical interactions, and opening Pandora's box); deciphering cause to guide intervention (disaggregating symptoms and interactions, flexibility in assessment, and curtailing investigative intrusiveness); balancing complexities in medical management (trading off side effects, minimizing mismatched goals, and urgency in resolving severe symptoms); fostering hope and empowerment (allaying fear of the unknown, encouraging meaning making, championing patient empowerment, and truth telling); and depending on multidisciplinary expertise (maximizing knowledge exchange, sharing management responsibility, contending with hierarchical tensions, and isolation and discontinuity of care). CONCLUSION: Management of symptom clusters, as both an art and a science, is currently fraught with uncertainty in decision making. Strengthening multidisciplinary collaboration, continuity of care, more pragmatic planning of clinical trials to address more than one symptom, and training in symptom cluster management are required.


Asunto(s)
Actitud del Personal de Salud , Neoplasias/terapia , Médicos/psicología , Australia , Manejo de la Enfermedad , Femenino , Humanos , Entrevistas como Asunto , Masculino , Investigación Cualitativa , Síndrome
14.
J Pain Symptom Manage ; 51(1): 88-98, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26300025

RESUMEN

CONTEXT: Symptom clusters in advanced cancer can influence patient outcomes. There is large heterogeneity in the methods used to identify symptom clusters. OBJECTIVES: To investigate the consistency of symptom cluster composition in advanced cancer patients using different statistical methodologies for all patients across five primary cancer sites, and to examine which clusters predict functional status, a global assessment of health and global quality of life. METHODS: Principal component analysis and exploratory factor analysis (with different rotation and factor selection methods) and hierarchical cluster analysis (with different linkage and similarity measures) were used on a data set of 1562 advanced cancer patients who completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30. RESULTS: Four clusters consistently formed for many of the methods and cancer sites: tense-worry-irritable-depressed (emotional cluster), fatigue-pain, nausea-vomiting, and concentration-memory (cognitive cluster). The emotional cluster was a stronger predictor of overall quality of life than the other clusters. Fatigue-pain was a stronger predictor of overall health than the other clusters. The cognitive cluster and fatigue-pain predicted physical functioning, role functioning, and social functioning. CONCLUSIONS: The four identified symptom clusters were consistent across statistical methods and cancer types, although there were some noteworthy differences. Statistical derivation of symptom clusters is in need of greater methodological guidance. A psychosocial pathway in the management of symptom clusters may improve quality of life. Biological mechanisms underpinning symptom clusters need to be delineated by future research. A framework for evidence-based screening, assessment, treatment, and follow-up of symptom clusters in advanced cancer is essential.


Asunto(s)
Interpretación Estadística de Datos , Neoplasias/fisiopatología , Calidad de Vida , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Análisis por Conglomerados , Análisis Factorial , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Estudios Observacionales como Asunto , Análisis de Componente Principal , Ensayos Clínicos Controlados Aleatorios como Asunto , Análisis de Regresión , Síndrome , Adulto Joven
15.
J Palliat Med ; 18(6): 480-5, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25859908

RESUMEN

Many people in our communities live with symptoms for years or decades, something of relevance to hospice/palliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice/palliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice/palliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice/palliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice/palliative care: fatigue (up to 35%); pain (12%-31%); pain with neuropathic characteristics (9%); constipation (2%-29%); dyspnea (4%-9%); cognitive impairment (>10% of people >65 years old; >30% of people >85 years old); anxiety (4%); and depression (lifetime incidence 2%-15%; one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice/palliative care services, comparing this to whole-of-population estimates; and (2) whether this group is disproportionately represented in people with refractory symptoms.


Asunto(s)
Enfermedad Crónica/epidemiología , Cuidados Paliativos , Enfermo Terminal , Factores de Edad , Humanos , Prevalencia , Proyectos de Investigación , Factores de Riesgo
16.
BMJ Support Palliat Care ; 5(3): 273-80, 2015 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-25324335

RESUMEN

OBJECTIVE: Hospice/palliative care patients may differ from better studied populations, and data from other populations cannot necessarily be extrapolated into hospice/palliative care clinical practice. Pharmacovigilance studies provide opportunities to understand the harms and benefits of medications in routine practice. Gabapentin, a γ-amino butyric acid analogue antiepileptic drug, is commonly prescribed for neuropathic pain in hospice/palliative care. Most of the evidence however relates to non-malignant, chronic pain syndromes (diabetic neuropathy, postherpetic neuralgia, central pain syndromes, fibromyalgia). The aim of this study was to quantify the immediate and short-term clinical benefits and harms of gabapentin in routine hospice/palliative care practice. DESIGN: Multisite, prospective, consecutive cohort. POPULATION: 127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care. SETTINGS: 42 centres from seven countries. Data were collected at three time points-at baseline, at day 7 (and at any time; immediate and short-term harms) and at day 21 (clinical benefits). RESULTS: At day 21, the average dose of gabapentin for those still using it (n=68) was 653 mg/24 h (range 0-1800 mg) and 54 (42%) reported benefits, of whom 7 (6%) experienced complete pain resolution. Harms were reported in 39/127 (30%) patients at day 7, the most frequent of which were cognitive disturbance, somnolence, nausea and dizziness. Ten patients had their medication ceased due to harms. The presence of significant comorbidities, higher dose and increasing age increased the likelihood of harm. CONCLUSIONS: Overall, 42% of people experienced benefit at a level that resulted in continued use at 21 days.


Asunto(s)
Aminas/efectos adversos , Analgésicos/efectos adversos , Ácidos Ciclohexanocarboxílicos/efectos adversos , Cuidados Paliativos al Final de la Vida/métodos , Neuralgia/tratamiento farmacológico , Cuidados Paliativos/métodos , Farmacovigilancia , Ácido gamma-Aminobutírico/efectos adversos , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Gabapentina , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos
17.
J Clin Oncol ; 32(16): 1712-20, 2014 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-24799486

RESUMEN

PURPOSE: Multiple systematic reviews and meta-analyses have identified the effectiveness of patient education in improving cancer pain management. However, the mechanisms by which patient education improves pain outcomes are uncertain, as are the optimal delivery, content, timing, frequency, and duration. This review provides best-bet recommendations based on available evidence to guide service managers and clinicians in developing a patient education program. METHODS: We used patient-centered care, self-management, coaching, and a behavior change wheel as lenses through which to consider the evidence for elements of patient education most likely to be effective within the context of other strategies for overcoming barriers to cancer pain assessment and management. RESULTS: The evidence suggests that optimal strategies include those that are patient-centered and tailored to individual needs, are embedded within health professional-patient communication and therapeutic relationships, empower patients to self-manage and coordinate their care, and are routinely integrated into standard cancer care. An approach that integrates patient education with processes and systems to ensure implementation of key standards for pain assessment and management and education of health professionals has been shown to be most effective. CONCLUSION: Patient education is effective in reducing cancer pain and should be standard practice in all settings. For optimal results, patient education should be integrated with other strategies for implementing evidence-based, person-centered care and overcoming barriers at the levels of patient, provider, and health system.


Asunto(s)
Neoplasias/complicaciones , Manejo del Dolor/métodos , Manejo del Dolor/psicología , Dolor/etiología , Educación del Paciente como Asunto/métodos , Humanos
18.
J Pain Symptom Manage ; 48(3): 411-50, 2014 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-24703941

RESUMEN

CONTEXT: Advanced cancer patients typically experience multiple symptoms, which may influence patient outcomes synergistically. The composition of these symptom clusters (SCs) differs depending on various clinical variables and the timing and method of their assessment. OBJECTIVES: The objective of this systematic review was to examine the composition, longitudinal stability, and consistency across methodologies of common SCs, as well as their common predictors and outcomes. METHODS: A search of MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO was conducted using variants of symptom clusters, cancer, and palliative care. RESULTS: Thirty-three articles were identified and reviewed. Many SCs were identified, with four common groupings being anxiety-depression, nausea-vomiting, nausea-appetite loss, and fatigue-dyspnea-drowsiness-pain. SCs in most cases were not stable longitudinally. The various statistical methods used (most commonly principal component analysis, exploratory factor analysis, and hierarchical cluster analysis) tended to reveal different SCs. Different measurement tools were used in different studies, each containing a different array of symptoms. The predictors and outcomes of SCs were also inconsistent across studies. No studies of patient experiences of SCs were identified. CONCLUSION: Although the articles reviewed revealed four groups of symptoms that tended to cluster, there is limited consistency in the way in which SCs and variables associated with them are identified. This is largely due to a lack of agreement about a robust, clinically relevant definition of SCs. Future research should focus on patients' subjective experience of SCs to inform a clinically relevant definition of SCs and how they are managed over time.


Asunto(s)
Neoplasias/fisiopatología , Humanos , Neoplasias/terapia , Estudios Observacionales como Asunto , Cuidados Paliativos
20.
J Pain Symptom Manage ; 40(1): 49-59, 2010 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-20619212

RESUMEN

CONTEXT: Published literature has not defined the effectiveness of standardized educational tools that can be self-administered in the general oncology population with pain. OBJECTIVES: We sought to determine if an educational intervention consisting of a video and/or booklet for adults with cancer pain could improve knowledge and attitudes about cancer pain management, pain levels, pain interference, anxiety, quality of life, and analgesic use. METHODS: Eligible participants had advanced cancer, a pain score >/=2 of 10 in the last week, English proficiency, an estimated prognosis of more than one month, and were receiving outpatient cancer treatment at participating hospitals. Participants completed baseline assessments and then were randomly allocated to receive a booklet, a video, both, or neither, in addition to standard care. Outcome measures at two and four weeks included the Barriers Questionnaire (BQ), Brief Pain Inventory, Global Quality of Life Scale, and Hospital Anxiety and Depression Scale. Adequacy of analgesia and severity of pain were assessed with the Pain Management Index and a daily pain diary. RESULTS: One hundred fifty-eight participants were recruited from 21 sites over 42 months. Baseline mean barriers scores were lower than reported in previous Australian studies at 1.33 (standard deviation: 0.92). Mean average pain and worst pain scores improved significantly in patients receiving both the video and booklet by 1.17 (standard error [SE]: 0.51, P=0.02) and 1.12 (SE: 0.57, P=0.05), respectively, on a 0-10 scale. The addiction subscale of the BQ score was improved by 0.44 (SE: 0.19) for participants receiving any part of the intervention (P=0.03). CONCLUSION: Provision of a video and/or booklet for people with cancer pain was a feasible and effective adjunct to the management of cancer pain.


Asunto(s)
Neoplasias/complicaciones , Manejo del Dolor , Educación del Paciente como Asunto , Adulto , Australia , Femenino , Conocimientos, Actitudes y Práctica en Salud , Accesibilidad a los Servicios de Salud , Humanos , Masculino , Neoplasias/psicología , Dolor/etiología , Dolor/psicología , Dimensión del Dolor , Folletos , Factores Socioeconómicos , Grabación en Video
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