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Lakin, J. R; Desai, M, Engelman, K, O'Connor, N, Teuteberg, W. G, Coackley, A, Kilpatrick, L. B, Gawande, A, Fromme, E. K. Abstract: ObjectiveTo describe the strategies used by a collection of healthcare systems to apply different methods of identifying seriously ill patients for a targeted palliative care intervention to improve communication around goals and values.MethodsWe present an implementation case series describing the experiences, challenges and best practices in applying patient selection strategies across multiple healthcare systems implementing the Serious Illness Care Program (SICP).ResultsFive sites across the USA and England described their individual experiences implementing patient selection as part of the SICP. They employed a combination of clinician screens (such as the ‘Surprise Question’), disease-specific criteria, existing registries or algorithms as a starting point. Notably, each describes adaptation and evolution of their patient selection methodology over time, with several sites moving towards using more advanced machine learning–based analytical approaches.ConclusionsInvolving clinical and programme staff to choose a simple initial method for patient identification is the ideal starting place for selecting patients for palliative care interventions. However, improving and refining methods over time is important and we need ongoing research into better patient selection methodologies that move beyond mortality prediction and instead focus on identifying seriously ill patients—those with poor quality of life, worsening functional status and medical care that is negatively impacting their families. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001789 Issue No:Vol. 10, No. 4 (2020)
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Bandieri, E; Banchelli, F, Artioli, F, Mucciarini, C, Razzini, G, Cruciani, M, Potenza, L, D'Amico, R, Efficace, F, Bruera, E, Luppi, M. Abstract: ObjectiveThe positive impact of early palliative care interventions in advanced cancer patients has so far been largely evaluated in randomised controlled trials. This study aimed at providing information on the value of early palliative/supportive care, integrated with standard oncologic care, in a real-life setting.MethodsThis was a retrospective observational study of 292 advanced cancer patients consecutively admitted at Carpi Hospital in Modena, Italy, between 2014 and 2017. For the purpose of this analysis, patients were classified into two groups (early and delayed palliative/supportive care patients), and analysed for different clinical indicators. Early and delayed palliative/supportive care were classified according to the time elapsed from advanced cancer diagnosis until palliative/supportive care start.ResultsA total of 200 patients (68%), with at least three visits, were included in the analyses. The frequency of chemotherapy use in the last 60 days of life was 3.4% and 24.6% in the early and delayed groups, respectively (adjusted OR=0.1; 95% CI 0.0 to 0.4; p=0.002). The estimated survival probability at 1 year was 74.5% (95% CI 65.0% to 85.4%) and 45.5% (95% CI 37.6% to 55.0%), in the early and delayed groups, respectively. Performance status, pain and all the Edmonton Symptom Assessment Scale items, assessed at baseline and at 1 to 12 weeks after the intervention, showed significant improvement over time. However, no between-group differences were found with regard to symptom outcomes.ConclusionsAn earlier palliative/supportive care intervention was associated with reduced aggressiveness of therapy, in patients receiving community oncology care. Symptom burden was improved by early palliative/supportive care, independently of the timing of patient referral. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001794 Issue No:Vol. 10, No. 4 (2020)
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Vermorgen, M; De Vleminck, A, Leemans, K, Van den Block, L, Van Audenhove, C, Deliens, L, Cohen, J. Abstract: ObjectivesTo evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.MethodsA cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.ResultsOf all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.ConclusionsFamily carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001795 Issue No:Vol. 10, No. 4 (2020)
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Hum, A; Wong, Y. K. Y, Yee, C. M, Lee, C. S, Wu, H. Y, Koh, M. Y. H. Abstract: ObjectiveTo develop and validate a simple prognostic tool for early prediction of survival of patients with advanced cancer in a tertiary care setting.DesignProspective cohort study with 2 years’ follow-up.SettingSingle tertiary teaching hospital in Singapore.ParticipantsThe study includes consecutive patients diagnosed with advanced cancer who were referred to a palliative care unit between 2013 and 2015 (N=840). Data were randomly split into training (n=560) and validation (n=280) sets.Results743 (88.5%) patients died with a mean follow-up of 97.0 days (SD 174.0). Cox regression modelling was used to build a prognostic model, cross-validating with six randomly split dataset pairs. Predictor variables for the model included functional status (Palliative Performance Scale, PPS V.2), symptoms (Edmonton Symptom Assessment System, ESASr), clinical assessment (eg, the number of organ systems with metastasis, serum albumin and total white cell count level) and patient demographics. The area under the receiver operating characteristic curve using the final averaged prognostic model was between 0.69 and 0.75. Our model classified patients into three prognostic groups, with a median survival of 79.0 days (IQR 175.0) for the low-risk group (0–1.5 points), 42.0 days (IQR 75.0) for the medium-risk group (2.0–5.5 points), and 15.0 days (IQR 28.0) for the high-risk group (6.0–10.5 points).ConclusionsPROgnostic Model for Advanced Cancer (PRO-MAC) takes into account patient and disease-related factors and identify high-risk patients with 90-day mortality. PPS V.2 and ESASr are important predictors. PRO-MAC will help physicians identify patients earlier for supportive care, facilitating multidisciplinary, shared decision-making. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001702 Issue No:Vol. 10, No. 4 (2020)
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Servadio, M; Cottone, F, Sommer, K, Oerlemans, S, van de Poll-Franse, L, Efficace, F. Abstract: ObjectivesTo investigate whether physical activity (PA) is associated with health-related quality of life (HRQOL) outcomes in multiple myeloma (MM) survivors up to 11 years after diagnosis.MethodsWe used data from the Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry. We included 175 MM survivors diagnosed between 1999 and 2009 as registered by the Netherlands Cancer Registry. Sixty-four per cent (n=112/175) of patients who received the questionnaires, completed the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and the EORTC QLQ-MY20. Patients were classified into two groups: physically active and not physically active patients. Univariable and multivariable linear regression models were used to evaluate associations between PA and HRQOL outcomes.ResultsPhysically active patients reported a statistically significant higher global health status/HRQOL (p=0.001), lower fatigue (p=0.002) and fewer side effects of treatments (p=0.001), than not physically active patients. PA was not associated with psychological symptoms (ie, anxiety and depressive symptoms) (anxiety: p=0.139; depressive symptoms: p=0.073). Exploratory analyses performed on the other scales of the EORTC QLQ-C30 indicated statistically significant better outcomes in several functional and symptom subscales for physically active patients.ConclusionsThese findings might contribute to a better understanding of the relationship between PA and disease specific HRQOL aspects in MM survivors. Prospective studies are warranted to further elucidate on the beneficial effects of PA on HRQOL outcomes of MM survivors. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001755 Issue No:Vol. 10, No. 4 (2020)
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Ernstmann, N; Enders, A, Halbach, S, Nakata, H, Kehrer, C, Pfaff, H, Geiser, F. Abstract: ObjectiveTo describe psycho-oncological care structures and processes in German breast cancer centres from the perspective of the centre administration.MethodsThe findings are based on a postal survey of a representative random sample of surgical sites of certified breast cancer centres in Germany. Data were collected in 2013 and 2014. The questionnaire included questions about infrastructure, patient information standards, psycho-oncological services and aspects of organisational culture. Data analyses included frequencies, means and bivariate relationships.ResultsThe return rate was 88.3% (53 hospital sites). Psycho-oncological care is provided by permanent employees in 87%. The average number of full-time-equivalent employees (FTE) is 1.23. Most breast cancer centres engage the occupational group of psycho-oncologists for psycho-oncological care (90%), followed by the medical service (80%) and breast care nurses (78%) (multiple answers were possible). The correlation coefficient between FTEs and surgical treatments per year is not significant (r=0.292, p=0.051). Hospitals are screening every inpatient for the need of psycho-oncological support in 76% of all sites. Frequently used screening instruments are distress thermometer (19%), clinical interview (13%) and basic psycho-oncological documentation (11%).ConclusionOur data provide insights into the self-reported structural and procedural quality of psycho-oncological care in German breast cancer centres. Further research should examine patient and caregiver perspective on the psycho-oncological services provided by breast cancer centres. Keywords: Open access PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001704 Issue No:Vol. 10, No. 4 (2020)
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Skorstengaard, M. H; Jensen, A. B, Andreassen, P, Brogaard, T, Brendstrup, E, Lokke, A, Aagaard, S, Wiggers, H, Neergaard, M. A. Abstract: ObjectivesAdvance care planning (ACP) can be a way to meet patients’ end-of-life preferences and enhance awareness of end-of-life care. Thereby it may affect actual place of death (APOD) and decrease the rate of hospitalisations. The aim was to investigate if ACP among terminally ill patients with lung, heart and cancer diseases effects fulfilment of preferred place of death (PPOD), amount of time spent in hospital and APOD.MethodsThe study was designed as a randomised controlled trial. Patients were assessed using general and disease-specific criteria and randomised into groups: one received usual care and one received usual care plus ACP. The intervention consisted of a discussion between a healthcare professional, the patient and their relatives about preferences for end-of-life care. The discussion was documented in the hospital file.ResultsIn total, 205 patients were randomised, of which 111 died during follow-up. No significant differences in fulfilment of PPOD (35% vs 52%, p=0.221) or in amount of time spent in hospital among deceased patients (49% vs 23%, p=0.074) were found between groups. A significant difference in APOD was found favouring home death in the intervention group (17% vs 40%, p=0.013).ConclusionConcerning the primary outcome, fulfilment of PPOD, and the secondary outcome, time spent in hospital, no differences were found. A significant difference concerning APOD was found, as more patients in the intervention group died at home, compared with the usual care group.Trial registration number NCT01944813. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001677 Issue No:Vol. 10, No. 4 (2020)
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Harrison Dening, K; Castle, E, Scates, C, De Vries, K. Abstract: ObjectivesHistorically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP.MethodsA user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template.ResultsNine cyclical stages were undertaken to achieve the outcome of an ACP guide and template.ConclusionCo-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials. Authors : PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001700 Issue No:Vol. 10, No. 4 (2020)
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O'Riordan, J; Noble, H, Kane, P. M, Smyth, A. Abstract: ObjectivesOlder patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists’ clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.MethodsA qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.ResultsThree key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.ConclusionsAdvance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001759 Issue No:Vol. 10, No. 4 (2020)
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Hum, A; Tay, R. Y, Wong, Y. K. Y, Ali, N. B, Leong, I. Y. O, Wu, H. Y, Chin, J. J, Lee, A. O. K, Koh, M. Y. H. Abstract: ObjectivesWe established an integrated palliative homecare programme for advanced dementia. This study explores patients’ symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on these parameters and examines familial caregiver burden.MethodsThis is a prospective cohort study. Patients at Functional Assessment Stage 7, with an albumin level PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001798 Issue No:Vol. 10, No. 4 (2020)
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Shin, S; Park, J, Hong, J, Park, J. H. Abstract: ObjectivesThe gait disturbance in spastic paraplegic patients lowers the gait speed, increases fall risk and eventually lower the quality of life. This study aims to investigate the effect of electrical twitch obtaining intramuscular stimulation (ETOIMS) on spastic paraplegic patients’ gait speed and pattern.MethodsA prospective short-term cohort study was designed in the outpatient clinic of the department of rehabilitation in a tertiary hospital. Patients with spastic paraplegia (N=5) were participated, including spinal cord tumour (N=2), cervical myelitis (N=1), hereditary spastic paraplegia (NIPA1 mutation; N=1) and spinal cord injury (N=1). The participants underwent ETOIMS. The target muscles were the bilateral quadratus lumborum, multifidus inserting to the L4 and L5 spinous process, and gluteus medius. Gait speed, gait pattern and subjective symptoms, including pain scores (measured by visual analogue scale), were compared before and immediately after the intervention.ResultsAll patients subjectively reported reduced stiffness during walking and alleviated muscular pain in the lower back and gluteal area. After one session of ETOIMS, patient 1–4 showed 57%, 29%, 33% and 6 % improvement in gait speed, respectively, and all patients showed increased pelvic dissociation.ConclusionsThe ETOIMS can be effective in improving gait speed and stability by relaxing the muscles or alleviating the pain in the lower back and gluteal area in spastic paraplegic patients. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001738 Issue No:Vol. 10, No. 4 (2020)
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Gijsberts, M.-J. H. E; van der Steen, J. T, Hertogh, C. M. P. M, Deliens, L. Abstract: ObjectiveTo examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.MethodsA cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians’ provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.ResultsThe response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident’s religiousness, fear of dying and involvement of a healthcare chaplain.ConclusionMost physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician’s own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents. Keywords: Open access PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001756 Issue No:Vol. 10, No. 4 (2020)
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Krikheli, L; Carey, L. B, Mathisen, B. A, Erickson, S, Carey-Sargeant, C. L. Abstract: BackgroundGiven the dearth of literature and no clinical practice guidelines written for speech-language pathologists (SLPs) working in paediatric palliative care (PPC), a need has been identified to explore the scope of clinical practice and strategies used by SLPs.ObjectiveThis study aims to undertake an international investigation into the role and scope of practice of SLPs working in PPC to develop consensus-driven ‘Recommendations for Speech-Language Pathologists in Paediatric Palliative Care Teams’ (ReSP3CT).MethodsA modified Delphi process will be used to synthesise consensus-based statements from SLPs in six different countries about their role and practice working in PPC. Initially, preliminary survey data will be collected from SLPs to obtain demographic and caseload information. Respondents will then be invited to participate in an in-depth interview to explore common and unique themes that emerge from the online survey. Participants from the interview will then ‘opt-in’ to become Delphi panel members and receive questionnaires comprising statements for agreement over multiple rounds. Statements will be based on common themes that arise from the literature review, survey and interview data. The Delphi process for each statement will stop if statements achieve ≥ 70 % agreement and an IQR of ≤ 1 (maximum of five rounds).ConclusionThis is the first study to investigate the role and practice of SLPs in PPC across internationally accepted scope of practice areas. The study will use existing frameworks for statistical analysis and a mixed-methods approach to aid in the synthesis of statements/recommendations for international consensus. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001667 Issue No:Vol. 10, No. 4 (2020)
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Conboy, L; Krol, J, Tomas, J, Yeh, G. Y, Wayne, P, Salmoirago-Blotcher, E. Abstract: ObjectivesCardiac rehabilitation (CR) programmes are standard of care for patients following a coronary event. While such exercise-based secondary prevention programme do offer benefits, they are used by less than 30% of eligible patients and attrition within these programmes is high. This project is a nested qualitative assessment of a pilot programme considering Tai Chi (TC) as an alternative to CR. We hypothesised that TC may overcome several key barriers to CR.MethodsA semistructured focus group agenda was used to assess three key domains of feasibility: (1) patients’ experiences, (2) reasons/barriers for not having attended CR and (3) any improvements in physical activity and other secondary outcomes (quality of life, weight, sleep). A thematic analysis was used to better understand the key concepts.ResultsThis high-risk group of patients reported that they enjoyed TC exercise, and felt confident and safe doing it. TC practice was reported to support other types of physical activity allowing for a generalisation of positive effects.DiscussionThis analysis is consistent with published reports of TC practice improving mood and psychological well-being. Qualitative methods allowed us to find emergent experiential reports of behaviour change factors found in established behaviour change theories. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001685 Issue No:Vol. 10, No. 4 (2020)
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Brettell, R; Fisher, R, Hunt, H, Garland, S, Lasserson, D, Hayward, G. Abstract: ObjectivesOut-of-hours (OOH) primary care services are contacted in the last 4 weeks of life by nearly 30% of all patients who die, but OOH palliative prescribing remains poorly understood. Our understanding of prescribing demand has previously been limited by difficulties identifying palliative patients seen OOH. This study examines the volume and type of prescriptions issued by OOH services at the end of life.MethodsA retrospective cohort study was performed by linking a database of Oxfordshire OOH service contacts over a year with national mortality data, identifying patients who died within 30 days of OOH contact. Demographic, service and prescribing data were analysed.ResultsA prescription is issued at 14.2% of contacts in the 30 days prior to death, compared with 29.9% of other contacts. The most common prescriptions were antibiotics (22.2%) and strong opioids (19%). 41.8% of prescriptions are for subcutaneously administered medication. Patients who were prescribed a syringe driver medication made twice as many OOH contacts in the 30 days prior to death compared with those who were not.ConclusionAbsolute and relative prescribing rates are low in the 30 days prior to death. Further research is required to understand what occurs at these non-prescribing end of life contacts to inform how OOH provision can best meet the needs of dying patients. Overall, relatively few patients are prescribed strong opioids or syringe drivers. When a syringe driver medication is prescribed this may help identify patients likely to be in need of further support from the service. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001784 Issue No:Vol. 10, No. 4 (2020)
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Keeley, P; Buchanan, D, Carolan, C, Pivodic, L, Tavabie, S, Noble, S. Pages: 381 - 384 Abstract: The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients.MethodsWe undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19.Results12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure.ConclusionsThere remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency. Keywords: COVID-19 PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2020-002368 Issue No:Vol. 10, No. 4 (2020)
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Roji, R; Stone, P, Ricciardi, F, Candy, B. Pages: 385 - 394 Abstract: BackgroundCancer-related fatigue (CRF) is one of the most distressing symptoms experienced by patients. There is no gold standard treatment, although multiple drugs have been tested with little evidence of efficacy. Randomised controlled trials (RCTs) of these drugs have commented on the existence or size of the placebo response (PR). The objective of this systematic review was to establish the magnitude of the PR in RCTs of drugs to relieve CRF and to identify contributing factors.MethodRCTs were included in which the objective was to treat CRF. A meta-analysis was conducted using the standardised mean change (SMC) between baseline and final measurement in the placebo group. To explore factors that may be associated with the PR (eg, population or drug), a meta-regression was undertaken. Risk of bias was assessed using the revised Cochrane tool.ResultsFrom 3916 citations, 30 relevant RCTs were identified. All had limitations that increased their risk of bias. The pooled SMC in reduction in fatigue status in placebo groups was –0.23 (95% confidence intervals –0.42 to –0.04). None of the variables analysed in the meta-regression were statistically significant related to PR.ConclusionThere is some evidence, based on trials with small samples, that the PR in trials testing drugs for CRF is non-trivial in size and statistically significant. We recommend that researchers planning drug studies in CRF should consider implementing alternative trial designs to better account for PR and decrease impact on the study results. Keywords: Open access PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-002163 Issue No:Vol. 10, No. 4 (2020)
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Tanzi, S; Venturelli, F, Luminari, S, Merlo, F. D, Braglia, L, Bassi, C, Costantini, M. Pages: 395 - 403 Abstract: BackgroundEarly palliative care together with standard haematological care for advanced patients is needed worldwide. Little is known about its effect. The aim of the review is to synthesise the evidence on the impact of early palliative care on haematologic cancer patients’ quality of life and resource use.Patients and methodsA systematic review was conducted. The search terms were early palliative care or simultaneous or integrated or concurrent care and haematological or oncohaematological patients. The following databases were searched: PubMed, Embase, Cochrane, CINHAL and Scopus. Additional studies were identified through cross-checking the reference articles. Studies were in the English language, with no restriction for years. Two researchers independently reviewed the titles and abstracts, and one author assessed full articles for eligibility.ResultsA total of 296 studies titles were reviewed. Eight articles were included in the synthesis of the results, two controlled studies provided data on the comparative efficacy of PC interventions, and six one-arm studies were included. Since data pooling and meta-analysis were not possible, only a narrative synthesis of the study results was performed. The quality of the two included comparative studies was low overall. The quality of the six non-comparative studies was high overall, without the possibility of linking the observed results to the implemented interventions.ConclusionsStudies on early palliative care and patients with haematological cancer are scarce and have not been prospectively designed. More research on the specific population target, type and timing of palliative care intervention and standardisation of collected outcomes is required.PROSPERO registration numberCRD42020141322. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2020-002386 Issue No:Vol. 10, No. 4 (2020)
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Wilk, M; Kepski, J, Kepska, J, Casselli, S, Szmit, S. Pages: 404 - 410 Abstract: Exercise is a well-established factor which improves outcomes of oncological patients during curative treatment as well as in cancer survivors. However, the role of physical activity in metastatic disease, due to the deficiency of high-level evidence from prospective clinical trials, remains a partially unexplored field of research. Additionally, no specific guidelines related to exercise for persons with advanced cancer have been developed so far. Unfortunately, this research deficit may effectively prevent physicians from prescribing adequate and safe recommendations on physical activity to their patients. In an attempt to fill this gap in clinical practice, we present here an up-to-date review of potential benefits of exercise interventions in relation to the survival, quality of life and supportive care for patients with metastatic cancer. We also review the data on the safety of physical activity with special emphasis on elderly populations or individuals with bone metastases. Finally, we discuss the most relevant clinical factors that should be considered during exercise qualification. In conclusion, physical activity is an important tool for improving the outcomes of people undergoing anticancer therapy for metastatic disease. However, the training should be tailored individually to the patient’s functional status, comorbidities and preferences. Physical activity should become a standard component of every metastatic cancer care plan. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2020-002487 Issue No:Vol. 10, No. 4 (2020)
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Cathcart-Rake, E. J; Smith, D, Zahrieh, D, Loprinzi, C. L. Pages: 411 - 413 Abstract: ObjectivesAs a rose geranium in sesame oil spray product has been anecdotally noted to improve nasal vestibulitis symptoms, this study was designed to assess whether patients with nasal vestibulitis associated with cancer-directed therapy experienced symptomatic improvements from it.MethodsPatients with breast cancer, prescribed rose geranium nasal spray, were identified by looking at pharmacy records and patient diagnosis at Mayo Clinic Rochester. Patient medical information, as well as documentation of symptoms, were gleaned from medical charts. Questionnaires were sent to patients regarding their experiences.ResultsOf the 40 patients with breast cancer who were prescribed rose geranium nasal spray, 100% were receiving cancer-directed therapy: 58 % were receiving taxane chemotherapy; others received a variety of cytotoxic and targeted therapy treatments. Twenty patients who had used the spray product returned surveys. Patient-reported nasal symptoms included bleeding (90%), dryness (86%), pain (81%), scabbing (67%) and sores (52%); patients consistently reported symptoms at a higher proportion than did healthcare providers. All patients who used the rose geranium nasal spray reported symptomatic benefit; one reported a little benefit, 11 (55%) reported moderate benefit and eight (40%) reported dramatic or complete resolution of symptoms. The therapy was well tolerated in most patients.ConclusionsRose geranium in sesame oil nasal spray appears to improve patient-reported nasal symptoms associated with cancer-directed therapy. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2018-001569 Issue No:Vol. 10, No. 4 (2020)
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Sznitman, S. R; Vulfsons, S, Meiri, D, Weinstein, G. Pages: 415 - 420 Abstract: ObjectivesMedical cannabis (MC) is increasingly being used for treatment of chronic pain symptoms. Among patients there is also a growing preference for the use of MC to manage sleep problems. The aim of the current study was to examine the associations between use of whole plant cannabis and sleep problems among chronic pain patients.MethodsA total of 128 individuals with chronic pain over the age of 50 years were recruited from the Rambam Institute for Pain Medicine in Haifa, Israel. Of them, 66 were MC users and 62 were non-users. Regression models tested the differences in sleep problems between the two groups. Furthermore, Pearson correlations between MC use measures (dose, length and frequency of use, number of strains used, tetrahydrocannabinol/cannabidiol levels) and sleep problems were assessed among MC users.ResultsAfter adjustment for age, sex, pain level and use of sleep and anti-depressant medications, MC use was associated with less problems with waking up at night compared with non-MC use. No group differences were found for problems with falling asleep or waking up early without managing to fall back asleep. Frequent MC use was associated with more problems waking up at night and falling asleep.ConclusionsMC use may have an overall positive effect on maintaining sleep throughout the night in chronic pain patients. At the same time, tolerance towards potential sleep-inducing properties of MC may occur with frequent use. More research based on randomised control trials and other longitudinal designs is warranted. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001938 Issue No:Vol. 10, No. 4 (2020)
Authors:
Johnson, M. J; Sbizzera, I, Fairhurst, C, Fazekas, B, Agar, M, Ekstrom, M, Currow, D. C. Pages: 421 - 428 Abstract: ObjectivesWe aimed to identify and evaluate: (1) treatment-emergent adverse events (TEAE (worse or new since baseline)) and the subgroup of severe TEAEs in a placebo-controlled 7-day randomised trial of regular, low-dose, sustained-release oral morphine for chronic breathlessness and (2) clinical characteristics associated with TEAE.MethodsSafety analysis of trial data. Adults with chronic breathlessness (modified Medical Research Council breathlessness score ≥2) due to heart or lung disease, or cancer, not on regular opioids were eligible. Symptoms associated with opioids (TEAE of special interest) were systematically sought using Common Terminology Criteria for Adverse Events (CTCAE) grading. Other harms could be reported at any time. The relationship between characteristics and presence of ≥1 TEAE of special interest was explored using univariable logistic regression analyses.Results1449/5624 (26%) Adverse Events from 279 participants were TEAE of which 150/1449 (10%) were severe (CTCAE grades 3–5). 1086/5624 (75%) were events of special interest of which 41/1086 (4%) were severe. Compared with placebo, morphine was not associated with more TEAE or severe TEAE of special interest (TEAE: OR 0.53, 95% CI 0.21 to 1.38, p=0.20; severe TEAE: OR 0.96, 95% CI 0.27 to 3.41, p=0.95) nor with CTCAE severity grade (2=4.39, p=0.50). Among the 26/150 (17%) with severe TEAEs, study withdrawal was more common in the morphine arm (18/26 (69%) morphine arm; 8/26 (30%) placebo arm). None of the severe TEAEs was a respiratory harm.ConclusionsSevere morphine-associated toxicity was uncommon and not associated with study arm. Clinical consequences were minor and self-limiting.Trial registration numberACTRN126000806268. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-002009 Issue No:Vol. 10, No. 4 (2020)
Authors:
Poolman, M; Makin, M, Briggs, J, Scofield, K, Campkin, N, Williams, M, Sharma, M. L, Laird, B, Mayland, C. R, On behalf of the INPIC Group, Ellershaw, Antrobus, Leach, Hugel, Byers, Jeffers, Cook, Walton Pages: 429 - 434 Abstract: ObjectivesPercutaneous cervical cordotomy (PCC) is an interventional ablative procedure in the armamentarium for cancer pain treatment, but there is limited evidence to support its use. This study aimed to assess the effectiveness and safety of PCC.MethodsAnalysis was undertaken of the first national (UK) prospective data repository of adult patients with cancer undergoing PCC for pain treatment. The relationship between pain and other outcomes before and after PCC was examined using appropriate statistical methods.ResultsData on 159 patients’ PCCs (performed from 1 January 2012 to 6 June 2017 in three centres) were assessed: median (IQR) age was 66 (58–71) years, 47 (30%) were female. Mesothelioma was the most common primary malignancy (57%). The median (IQR) time from cancer diagnosis to PCC assessment was 13.3 (6.2–23.2) months; PCC to follow-up was 9 (8–25) days; and survival after PCC was 1.3 (0.6–2.8) months. The mean (SD) for ‘average pain’ using a numerical rating scale was 6 (2) before PCC and 2 (2) at follow-up, and for ‘worst pain’ 9 (1) and 3 (3), respectively. The median (IQR) reduction in strong opioid dose at follow-up was 50% (34–50). With the exception of ‘activity’, all health-related quality of life scores (5-level version of EuroQol-5 Dimension) either improved or were stable after PCC. Six patients (4%) had PCC-related adverse events.ConclusionsPCC is an effective treatment for cancer pain; however, findings in this study suggest PCC referrals tended to be late in patients’ disease trajectories. Further study into earlier treatment and seeking international consensus on PCC outcomes will further enhance opportunities to improve patient care. Keywords: Open access PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-002057 Issue No:Vol. 10, No. 4 (2020)
Authors:
Teo, I; Baid, D, Ozdemir, S, Malhotra, C, Singh, R, Harding, R, Malhotra, R, Yang, M. G, Neo, S. H.-S, Cheung, Y. B, Neo, P. S. H, Kanesvaran, R, Kumarakulasinghe, N. B, Lee, L. H, Koh, G. C. H, Finkelstein, E. A, COMPASS study group Pages: 435 - 442 Abstract: BackgroundFamily caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.AimWe examined the relationship between caregivers’ time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.Design/participantsCross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.ResultsTime spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.ConclusionGreater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role. Keywords: Editor's choice PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001979 Issue No:Vol. 10, No. 4 (2020)
Authors:
Lee, Y.-H; Wang, J.-S, Curtis, R, Huang, S.-J, Chang, S.-S, Chen, Y. C. Pages: 443 - 451 Abstract: ObjectivesLittle is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.MethodsA longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.ResultsIn total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: –44.04% and 95% CIs –75.65 to –12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: –0.35% and 95% CI –0.58 to –0.11 on IES and coefficient: –0.22% and 95% CI –0.40 to –0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: –3.29% and 95% CI –6.32 to –0.25 on IES and coefficient: –3.22% and 95% CI –5.24 to –1.20 on CES-D).ConclusionsPalliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-002103 Issue No:Vol. 10, No. 4 (2020)
Authors:
Wang, Y; Zhang, L, Jin, S, Li, H, Gong, L, Wang, Y, Jin, S, Cao, Y, Shih, Y, Lu, Q. Pages: 452 - 461 Abstract: ObjectiveTo explore the relationships between swallowing functional outcomes and nutritional status in patients with head and neck cancer undergoing radiotherapy (RT).MethodsThis longitudinal study included 122 patients. Data were collected at three time points: baseline (T1), the third week of RT (T2) and the completion of RT (T3). The Common Terminology Criteria for Adverse Events was used to assess the symptom of dysphagia and other toxicities; the MD Anderson Dysphagia Inventory (MDADI) was used to assess the patient-perceived swallowing functional outcomes; the nutritional status was evaluated by the weight ratio and the Patient-Generated Subjective Global Assessment (PG-SGA). The generalised estimating equation (GEE) was used to measure the correlation of MDADI with the weight ratio or PG-SGA and also to analyse the influential factors of swallowing functional outcomes.ResultsThe participants’ acute dysphagia rates were 5.7% at T1, 69.7% at T2 and 77.9% at T3. The swallowing functional outcomes worsen over RT (p PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2020-002216 Issue No:Vol. 10, No. 4 (2020)
Authors:
de Nooijer, K; Pivodic, L, Deliens, L, Miccinesi, G, Vega Alonso, T, Moreels, S, Van den Block, L. Pages: 462 - 468 Abstract: BackgroundMany older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65–84 years and those 85 years and older who died non-suddenly in three European countries.MethodsThis is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013–2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators.ResultsGPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65–84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP–patient communication (aged 65–84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65–84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)).ConclusionsConsiderable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP–patient communication and multidisciplinary meetings. Keywords: Open access PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001967 Issue No:Vol. 10, No. 4 (2020)
Authors:
Hunt, K; Bernal, J, Worth, R, Shearn, J, Jarvis, P, Jones, E, Lowe, K, Madden, P, Barr, O, Forrester-Jones, R, Kroll, T, McCarron, M, Read, S, Todd, S. Pages: 469 - 477 Abstract: BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.ConclusionsAccess to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives. PubDate: 2020-11-19T21:50:52-08:00 DOI: 10.1136/bmjspcare-2019-001985 Issue No:Vol. 10, No. 4 (2020)
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