Perceptions and Preoccupations of Patients and Physicians Regarding Use of Medical Cannabis as an Intervention Against Chronic Musculoskeletal Pain: Results from a Qualitative Study.

Objective: Explore perceptions and preoccupations regarding use of medical cannabis against chronic musculoskeletal pain, among patients and physicians. Design: Qualitative study using interviews with patients and physicians, based on the Theory of Planned Behavior (TPB). Setting: The study was conducted in Quebec, Canada, in spring 2020. Subjects: We included 27 adult patients and 11 physicians (GPs, anesthesiologists, psychiatrists, and a rheumatologist); the mean age of patients was 48.2 years; 59.3% of patients and 36.4% of physicians were women; 59.3% of patients used no medical cannabis at the time of study; 45.5% of physicians had never authorized it. Methods: Semi-structured interviews were conducted, transcribed and for the qualitative analysis codes were developed in a hybrid, inductive and deductive approach. Guided by the TPB, facilitators and barriers, perceived benefits and harms, and perceived norms that may influence cannabis use or authorization were documented. Results: Although medical cannabis is an interesting avenue for the relief of chronic musculoskeletal pain, doctors and patients agreed that it remained a last line option, due to the lack of scientific evidence regarding its safety and efficacy. The norms surrounding medical cannabis also play an important role in the social and professional acceptance of this therapeutic option. Conclusion: Medical cannabis is seen as a last line option among interventions in the management of chronic pain, and attitudes and prior experiences play a role in the decision to use it. Study results may contribute to improved shared decision making between patients and physicians regarding this option.

The challenges of ethical deliberation in palliative care settings: A descriptive study.

OBJECTIVE: Inadequate deliberation processes about ethical problems occurring in palliative care settings may negatively impact both patients and healthcare professionals. Better knowledge of the palliative care professionals' practices regarding such processes could help identify specific education needs to improve the quality of palliative care in the context of complex ethical situations. Therefore, this descriptive study aimed to (1) examine ethical deliberation processes in interprofessional teams in five palliative care settings; (2) identify organizational factors that constrain such processes; and (3) based on this knowledge, identify priority education needs for future and current palliative care professionals. METHOD: The study involved three data collection activities: (1) direct observation of simulated interprofessional ethical deliberations in various palliative care settings; (2) individual semi-structured interviews; and (3) deliberative dialogues. RESULTS: Thirty-six healthcare professionals took part in the simulated ethical deliberations and in the deliberative dialogue activities, and 13 were met in an individual interview. The study results revealed suboptimal interprofessional collaboration and ethical deliberation competencies, particularly regarding awareness of the ethical issue under consideration, clarification of conflicting values, reasonable decision making, and implementation planning. Participants also reported facing serious organizational constraints that challenged ethical deliberation processes. SIGNIFICANCE OF RESULTS: This study confirmed the need for professional education in interprofessional collaboration and ethical deliberation so that palliative care professionals can adequately face current and future ethical challenges. It also enabled the identification of educational priorities in this regard. Future research should focus on identifying promising educational activities, assessing their effectiveness, and measuring their impact on patient and family experience and the quality of palliative care.

Distress experienced by lung cancer patients and their family caregivers in the first year of their cancer journey.

OBJECTIVES: Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis. METHODS: A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale-HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress. RESULTS: At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0-42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study. SIGNIFICANCE OF RESULTS: Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.

Cannabis against chronic musculoskeletal pain: a scoping review on users and their perceptions.

BACKGROUND: Chronic musculoskeletal pain (CMP) may lead to reduced physical function and is the most common cause of chronic non-cancer pain. Currently, the pharmacotherapeutic options against CMP are limited and frequently consist of pain management with non-steroidal anti-inflammatories, gabapentinoids, or opioids, which carry major adverse effects. Although the effectiveness of medical cannabis (MC) for CMP still lacks solid evidence, several patients suffering from it are exploring this therapeutic option with their physicians. OBJECTIVES: Little is known about patients' perceptions of their MC treatment for CMP. We aimed to increase this knowledge, useful for healthcare professionals and patients considering this treatment, by conducting a scoping literature review, following guidance by Arksey and O'Malley, to describe the views and perceptions of adult patients who had consumed MC to relieve chronic CMP. METHODS: Databases (PUBMED, EMBASE, Web of Science) and websites were searched using combinations of controlled and free vocabulary. All studies and study designs reporting on patients' perceptions regarding MC against CMP were considered. Studies had to include adult patients reporting qualitatively or quantitatively, i.e., through questionnaires, on MC use to treat CMP or other non-cancer pain, since studies reporting exclusively on perceptions regarding CMP were very rare. Study characteristics were extracted and limitations of the study quality were assessed. The review includes patients' demographic characteristics, patterns of MC use, perceived positive and negative effects, use of alcohol or other drugs, reported barriers to CM use, and funding sources of the studies. RESULTS: Participants of the 49 included studies reported that MC use helped them to reduce CMP and other chronic non-cancer pain, with only minor adverse effects, and some reported improved psychological well-being. In the included studies, men represent between 18 and 88% of the subjects. The mean age of participants in these studies (42/49) varied between 28.4 and 62.8 years old. The most common route of administration is inhalation. CONCLUSION: MC users suffering from CMP or other chronic non-cancer pain perceived more benefits than harms. However, the information from these studies has several methodological limitations and results are exploratory. These user-reported experiences must thus be examined by well-designed and methodologically sound clinical or observational studies, particularly regarding CMP, where reports are very scarce.

Continuity of Cancer Care and Collaboration Between Family Physicians and Oncologists: Results of a Randomized Clinical Trial.

PURPOSE: Collaboration between family physicians (FPs) and oncologists can be challenging. We present the results of a randomized clinical trial of an intervention designed to improve continuity of care and interprofessional collaboration, as perceived by patients with lung cancer and their FPs. METHODS: The intervention included (1) supplying FPs with standardized summaries related to each patient, (2) recommending that patients see their FP after receiving the cancer diagnosis, (3) supplying the oncology team with patient information resulting from FP visits, and (4) providing patients with priority access to FPs as needed. A total of 206 patients with newly diagnosed lung cancer were randomly assigned to the intervention (n = 104) or control group (n = 102), and 86.4% of involved FPs participated. Perceptions of continuity of care and interprofessional collaboration were assessed every 3 months for patients and at baseline and at the end of the study for FPs. Patient distress and health service utilization were also assessed. RESULTS: Patients and FPs in the intervention group perceived better interprofessional collaboration (patients: P <.0001; FPs: P = .0006) than those in the control group. Patients reported better informational continuity (P = .001) and management continuity (P = .05) compared to the control group, but no differences were found for FPs (information: P = .22; management: P = .13). No effect was found with regard to patient distress or health service utilization. CONCLUSIONS: This intervention improved patient and FP perception of interprofessional collaboration, but its effectiveness on continuity of care was less clear for FPs than for patients. Additional strategies should be considered to sustainably improve continuity of care and interprofessional collaboration.

A randomized clinical trial assessing a pragmatic intervention to improve supportive care for family caregivers of patients with lung cancer.

OBJECTIVE: Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care. METHOD: A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed. RESULTS: A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net. SIGNIFICANCE OF RESULTS: Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.

General practice nurses and physicians and end of life: a systematic review of models of care.

BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood. OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system. METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs. CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.

Facilitators and barriers to general practitioner and general practice nurse participation in end-of-life care: systematic review.

BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood. OBJECTIVE: To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC. METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 62 reviewed papers reported the GP's and GPN's role in EoLC or PC practice. Six themes emerged: patient factors; personal GP factors; general practice factors; relational factors; co-ordination of care; availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC. CONCLUSIONS: While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.

Assessing the Quality of Care Provided to Older Persons with Frailty in Five Canadian Provinces, Using Administrative Data.

Nous avons examiné la qualité des soins fournis aux personnes âgées fragiles dans cinq provinces canadiennes à partir de données administratives sur la santé. Dans chaque province, nous avons considéré les personnes âgées fragiles en fonction de deux cohortes : les personnes décédées et les personnes vivantes. Des règles de décision ont été utilisées pour déterminer quelles personnes étaient frêles, soit celles résidant en établissement de soins de longue durée, qui étaient en phase terminale ou dont le profil correspondait à deux des sept domaines identifiés. Ces domaines étaient fondés sur des échelles de fragilité, des discussions avec des gériatres et des indicateurs d'utilisation des services de santé. Nous avons évalué la qualité des soins à l'aide des indicateurs de qualité suivants : diminution de la durée de l'hospitalisation, diminution du nombre de réadmissions à l'hôpital, diminution du nombre de visites à l'urgence, augmentation de la continuité des soins fournis par un médecin de famille, diminution de l'utilisation de la ventilation mécanique et diminution du nombre d'admissions aux soins intensifs. À l'aide d'analyses de régression, nous avons également constaté que le sexe masculin et l'âge avancé étaient associés à une moins bonne qualité de soins dans les deux cohortes. Cette étude fournit des données de base qui permettront d'évaluer les futurs efforts visant à améliorer la qualité des soins offerts aux personnes âgées fragiles.We examined the quality of care provided to older persons with frailty in five Canadian provinces, using administrative health data. In each province, we identified two cohorts of older persons with frailty: decedents and living persons. Using decision rules, we considered individuals to be frail if they were long-term care residents, terminally ill, or met at least two of seven domains, which were based on frailty scales, geriatrician discussions, and health service utilization indicators. We assessed quality of care using selected quality indicators: decrease in length of hospital stay, decrease in the number of in-patient readmissions, decrease in the number of emergency department visits, increase in the level of family physician continuity of care, decrease in the use of mechanical ventilation, and decrease in the number of admissions to intensive care. Using regression analyses, we also found male sex and older age were associated with poorer quality of care in both cohorts. This study provides baseline data for evaluating future efforts to improve the quality of care provided to older persons with frailty.

Correlates of disrupted sleep-wake variables in patients with advanced cancer.

OBJECTIVES: High rates of sleep difficulties have been found in patients with advanced cancer. However, not much is known about factors that are associated with sleep impairments in this population and that could constitute their potential risk factors or consequences. This study conducted in patients with cancer receiving palliative care aimed to evaluate the relationships of subjective (sleep diary; Insomnia Severity Index, ISI) and objective (actigraphy) sleep-wake variables with several physical and psychological symptoms, maladaptive sleep behaviours, erroneous beliefs about sleep, quality of life, time to death and environmental factors. METHODS: The sample was composed of 57 community-dwelling patients with cancer receiving palliative care and with an Eastern Cooperative Oncology Group Scale score of 2 or 3. Actigraphic, light and sound recording and a daily sleep and pain diary were completed for seven consecutive days. A battery of self-report scales was also administered. RESULTS: Greater disruptions of subjective and objective sleep-wake variables were more consistently associated with worse physical symptoms than with psychological variables. Disrupted objective sleep-wake parameters were also associated with a greater frequency of maladaptive sleep behaviours. Finally, a greater nocturnal noise in the bedroom was correlated with more impairments in subjective and objective sleep-wake variables while a lower 24-hour light exposure was associated with more disruption of subjectively assessed sleep only. CONCLUSIONS: Although longitudinal studies are needed to establish the etiology of sleep-wake difficulties in patients with advanced cancer, our findings suggest that physical symptoms, maladaptive sleep behaviours and environmental factors can contribute to their development or their persistence and need to be adequately addressed.

General practice physicians' and nurses' self-reported multidisciplinary end-of-life care: a systematic review.

BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide end-of-life care (EoLC) as the population ages. To enhance primary palliative care (PC), the care they provide needs to be understood to inform best practice models of care. OBJECTIVE: To provide a comprehensive description of the self-reported role and performance of GPs and GPNs in (1) specific medical/nursing roles, (2) communication, (3) care co-ordination, (4) access and out-of-hours care, and (5) multidisciplinary care. METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 29 reviewed papers reported the GPs' and GPNs' role in EoLC or PC practice. GPs report a central role in symptom management, treatment withdrawal, non-malignant disease management and terminal sedation. Information provision included breaking bad news, prognosis and place of death. Psychosocial concerns were often addressed. Quality of communication depended on GP-patient relationships and GP skills. Challenges were unrealistic patient and family expectations, family conflict and lack of advance care planning. GPs often delayed end-of-life discussions until 3 months before death. Home visits were common, but less so for urban, female and part-time GPs. GPs co-ordinated care with secondary care, but in some cases parallel care occurred. Trust in, and availability of, the GP was critical for shared care. There was minimal reference to GPNs' roles. CONCLUSIONS: GPs play a critical role in palliative care. More work is required on the role of GPNs, case finding and models to promote shared care, home visits and out-of-hours services.

Continuity of care in general practice at cancer diagnosis (COOC-GP study): a national cohort study of 2853 patients.

BACKGROUND: At cancer diagnosis, it is unclear whether continuity of care (COC) between the patient and GP is safeguarded. AIM: To identify patient-GP loss of COC around the time of, and in the year after, a cancer diagnosis, together with its determinants. DESIGN AND SETTING: A post-hoc analysis of data from a prospective cohort of GPs in France, taken from a survey by the Observatoire de la Médecine Générale. METHOD: A prospective GP cohort (n = 96) filed data on patients who were diagnosed with incident cancer between 1 January 2000 and 31 December 2010. COC was assessed by ascertaining the frequency of consultations and the maximal interval between them. (In France, patients see their referring/named GP in most cases.) A loss of COC was measured during the trimester before and the year after the cancer diagnosis, and the results compared with those from a 1-year baseline period before cancer had been diagnosed. A loss of COC was defined as a longer interval (that is, the maximum number of days) between consultations in the measurement periods than at baseline. Determinants of the loss in COC were assessed with univariate and multivariate logistic regression models. RESULTS: In total, 2853 patients were included; the mean age was 66.1 years. Of these, 1440 (50.5%) were women, 389 (13.6%) had metastatic cancer, and 769 (27.0%) had a comorbidity. The mean number of consultations increased up to, and including, the first trimester after diagnosis. Overall, 26.9% (95% confidence interval [CI] = 25.3 to 28.6) of patients had a loss of COC in the trimester before the diagnosis, and 22.3% (95% CI = 20.7 to 23.9) in the year after. Increasing comorbidity score was independently associated with a reduction in the loss of COC during the year after diagnosis (adjusted odds ratio [OR] comorbidity versus no comorbidity 0.61, 95% CI = 0.48 to 0.79); the same was true for metastatic status (adjusted OR metastasis versus no metastasis 0.49, 95% CI = 0.35 to 0.70). CONCLUSION: As COC is a core value for GPs and for most patients, special care should be taken to prevent a loss of COC around the time of a cancer diagnosis, and in the year after.

Feasibility of a Cognitive-Behavioral and Environmental Intervention for Sleep-Wake Difficulties in Community-Dwelling Cancer Patients Receiving Palliative Care.

BACKGROUND: High rates of sleep-wake difficulties have been found in patients with cancer receiving palliative care. Pharmacotherapy is the most frequently used treatment option to manage these difficulties despite numerous adverse effects and the absence of empirical evidence of its efficacy and innocuity in palliative care. OBJECTIVE: This pilot study aimed to assess the feasibility and acceptability of a cognitive-behavioral and environmental intervention (CBT-E) to improve insomnia and hypersomnolence in patients with a poor functioning level and to collect preliminary data on its effects. METHODS: Six patients with cancer receiving palliative care (Eastern Cooperative Oncology Group score 2-3), who had insomnia and/or hypersomnolence, received 1 CBT-E individual session at home. They applied the strategies for 3 weeks. Patients completed the Insomnia Severity Index, the Epworth Sleepiness Scale, a daily sleep diary, and a 24-hour actigraphic recording (7 days) at pretreatment and posttreatment, in addition to a semistructured interview (posttreatment). RESULTS: Participants found strategies easy to apply most of the time, and none was rated as impossible to use because of their health condition. However, their adherence and satisfaction toward CBT-E were highly variable. Results on the effects of CBT-E were heterogeneous, but improvements were observed in patients with a persistent insomnia disorder. CONCLUSIONS: The CBT-E protocol tested among this highly selected sample was fairly well received and suggested positive outcomes in some patients, particularly those with an insomnia complaint alone. IMPLICATIONS: Efforts should be pursued to adapt CBT-E and develop other nonpharmacological interventions, in order to provide an alternative to pharmacotherapy for sleep-wake difficulties in this population.

Key stakeholders' views on the quality of care and services available to frail seniors in Canada.

BACKGROUND: Frail seniors often receive ineffective care, which does not meet their needs. It is still unclear how healthcare systems should be redesigned to be more sensitive to the needs and values of frail seniors and their caregivers. We thus aimed to describe key stakeholders' perspectives on the current healthcare and services available to frail seniors. METHODS: In this qualitative descriptive study, we conducted semi-structured interviews with a convenience sample of 42 frail seniors, caregivers, clinicians, or healthcare administrators/decision makers involved in frail senior care from five Canadian provinces. We explored participants' perspectives on the quality of care and services for frail seniors. We used an inductive/deductive thematic data analysis approach based on the Square-of-Care model, including emerging themes using the constant comparison method. RESULTS: We grouped participants' perspectives into strengths, weaknesses and opportunities for improvement, and then into nine themes: care processes, continuity of care, social frailty, access to healthcare and services, models of healthcare delivery, cost of care, healthcare staff management and professional development of healthcare providers, material resources and environmental design of healthcare facilities, and coordination of care. Our findings suggest redesigning assessment, communication with frail seniors and their caregivers, targeting care and services to the needs, and integrating care better across settings and in time. CONCLUSIONS: A systematic identification of frail older people is the first step to adapt healthcare systems to this population's needs. Participation of frail older people and their caregivers to decision making would also allow choosing care plans meeting their care goals. The integration of care and services across settings, over time, and with various providers, is also needed to meet frail senior needs.

The OptimaMed intervention to reduce inappropriate medications in nursing home residents with severe dementia: results from a quasi-experimental feasibility pilot study.

BACKGROUND: Medication regimens in nursing home (NH) residents with severe dementia should be frequently reviewed to avoid inappropriate medication, overtreatment and adverse drug events, within a comfort care approach. This study aimed at testing the feasibility of an interdisciplinary knowledge exchange (KE) intervention using a medication review guidance tool categorizing medications as either "generally", "sometimes" or "exceptionally" appropriate for NH residents with severe dementia. METHODS: A quasi-experimental feasibility pilot study with 44 participating residents aged 65 years or over with severe dementia was carried out in three NH in Quebec City, Canada. The intervention comprised an information leaflet for residents' families, a 90-min KE session for NH general practitioners (GP), pharmacists and nurses focusing on the medication review guidance tool, a medication review by the pharmacists for participating residents with ensuing team discussion on medication changes, and a post-intervention KE session to obtain feedback from team staff. Medication regimens and levels of pain and of agitation of the participants were evaluated at baseline and at 4 months post-intervention. A questionnaire for team staff explored perceived barriers and facilitators. Statistical differences in measures comparing pre and post-intervention were assessed using paired t-tests and Cochran's-Q tests. RESULTS: The KE sessions reached 34 NH team staff (5 GP, 4 pharmacists, 6 heads of care unit and 19 staff nurses). Forty-four residents participated in the study and were followed for a mean of 104 days. The total number of regular medications was 372 pre and 327 post-intervention. The mean number of regular medications per resident was 7.86 pre and 6.81 post-intervention. The odds ratios estimating the risks of using any regular medication or a "sometimes appropriate" medication post-intervention were 0.81 (95% CI: 0.71-0.92) and 0.83 (95% CI: 0.74-0.94), respectively. CONCLUSION: A simple KE intervention using a medication review guidance tool categorizing medications as being either "generally", "sometimes" or "exceptionally" appropriate in severe dementia was well received and accompanied by an overall reduction in medication use by NH residents with severe dementia. Levels of agitation were unaffected and there was no clinically significant changes in levels of pain. Staff feedback provided opportunities to improve the intervention.

General practice palliative care: patient and carer expectations, advance care plans and place of death-a systematic review.

BACKGROUND: With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important. OBJECTIVE: To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs' and GPNs' contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference. METHOD: Systematic literature review. DATA SOURCES: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified. CONCLUSIONS: Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required.

Systematic review of general practice end-of-life symptom control.

BACKGROUND: End of life care (EoLC) is a fundamental role of general practice, which will become more important as the population ages. It is essential that general practice's role and performance of at the end of life is understood in order to maximise the skills of the entire workforce. OBJECTIVE: To provide a comprehensive description of the role and performance of general practitioners (GPs) and general practice nurses (GPNs) in EoLC symptom control. METHOD: Systematic literature review of papers from 2000 to 2017 were sought from Medline, PsycINFO, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 46 papers reported GP performance in symptom management. There was no reference to the performance of GPNs in any paper identified. Most GPs expressed confidence in identifying EoLC symptoms. However, they reported lack of confidence in providing EoLC at the beginning of their careers, and improvements with time in practice. They perceived emotional support as being the most important aspect of EoLC that they provide, but there were barriers to its provision. GPs felt most comfortable treating pain, and least confident with dyspnoea and depression. Observed pain management was sometimes not optimal. More formal training, particularly in the use of opioids was considered important to improve management of both pain and dyspnoea. CONCLUSIONS: It is essential that GPs receive regular education and training, and exposure to EoLC from an early stage in their careers to ensure skill and confidence. Research into the role of GPNs in symptom control needs to occur.

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions.

BACKGROUND: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. AIM: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. DESIGN: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. PARTICIPANTS: A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). RESULTS: The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. CONCLUSIONS: Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Sleep-wake difficulties in community-dwelling cancer patients receiving palliative care: subjective and objective assessment.

OBJECTIVE: Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep-wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep-wake disorders and subsyndromal symptoms and to document subjective and objective sleep-wake parameters across various types of sleep-wake difficulties. METHOD: The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days. RESULTS: Overall, 68.6% of the sample had at least one type of sleep-wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep-wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep-wake difficulty.Significance of the Results:The high rates of sleep-wake difficulties found in this study indicate a need to screen more systematically for sleep-wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.

Effectiveness of an intervention to improve supportive care for family caregivers of patients with lung cancer: study protocol for a randomized controlled trial.

BACKGROUND: Family caregivers (FC) often experience higher distress levels than their relative with cancer. Many cancer centers have implemented distress screening programs, but most of them concentrate their efforts on patients, with little attention to their FC. To fill this gap, a pragmatic intervention has been designed to improve supportive care for FC of patients with lung cancer. This article describes the study protocol of a single-center randomized controlled trial to assess its effectiveness. METHODS/DESIGN: A total of 120 lung cancer patients and their FC are randomly assigned to the experimental group (exposed to intervention, N = 60) or to the control group (usual care, N = 60). The intervention includes: (1) systematic FC distress screening and problem assessment near their relative's cancer diagnosis, and every 2 months, (2) privileged contact with an oncology nurse (ON) away from the patient to address FC problems and (3) liaison by the ON with the family physician of FC reporting high distress (thermometer score ≥5/10), or problems relying on FP expertise. In both groups, FC, patient and process-of-care outcomes are measured at baseline and every 3 months, up to 9 months. The primary endpoint is FC distress measured by the Hospital Anxiety and Depression Scale (HADS) and the Psychological Distress Index used in the Quebec Health Survey (PDQHS). Individual interviews with 10 FC and a focus group with the oncology team will be conducted at the study end to further document the effectiveness of the intervention and its impact on quality of life (for FC) and practice organization (for the oncology team). DISCUSSION: This trial will assess the effectiveness of an innovative intervention based on interprofessional collaboration between primary care and oncology care. It targets a population in great need, yet often neglected, and has the potential to clearly improve patient and caregiver experience of cancer care, and reduce the burden of disease. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT02531464 . Registered on 15 July 2015.