Healthcare interactions prior to first hospital admission with alcohol-related liver disease.

BACKGROUND AND AIMS: To examine the healthcare contacts of patients in the year before an index admission to hospital with alcohol-related liver disease (ArLD) to identify where opportunities for earlier identification of alcohol use disorders (AUD) and ArLD and intervention may occur. METHODS: A retrospective cohort study using the regional database encompassing NHS organisations across North West London (344 general practitioner [GP] practices, 4 acute hospital trusts and 2 mental health and community health trusts). Patients who had an index admission with ArLD were identified through healthcare coding and compared with a control cohort. Healthcare contacts, blood tests and AUD testing in the year preceding admission were measured. RESULTS: The ArLD cohort had 1494 participants with an index hospital admission with ArLD. The control cohort included 4462 participants. In the year preceding an index admission with ArLD, 91% of participants had at least one contact with primary care with an average of 2.97 (SD 2.45) contacts; 80% (n = 1199/1494) attended ED, 68% attended an outpatient clinic, and 42% (n = 628/1494) had at least one inpatient admission. Only 9% of the ArLD (137/1494) had formal testing for AUD. Abnormal bilirubin and platelets were more common in the ArLD than the control cohort 25% (138/560) and 28% (231/837), respectively, v 1% (12/1228) and 1% (20/1784). CONCLUSIONS: Prior to an index admission with ArLD patients have numerous interactions with all healthcare settings, indicating missed opportunities for early identification and treatment.

Implementation of neonatal phototherapy with the BiliCocoon Bag® device in the maternity ward and impact on mother-infant separation.

BACKGROUND: Free bilirubin jaundice is a frequent pathology in the neonatal period. The major complication is neurological toxicity, the most severe form of which is kernicterus. Overall, 5%-10% of jaundiced neonates require treatment. The first-line treatment is phototherapy, with intensive phototherapy being the gold standard. Other equipment is also available, including the BiliCocoon Bag®. It is a safe and controlled therapy that can be performed in the mother's room in the maternity ward, thereby avoiding separation and allowing for breast- or bottle-feeding during treatment. It is easy to install and does not require protective glasses, thus no scope or hospitalization. In our maternity ward, all neonates requiring intensive phototherapy are hospitalized in the neonatology ward. OBJECTIVE: The objective of our study was to evaluate the number of avoided hospitalizations in neonatology for free bilirubin jaundice since the introduction, according to a strict protocol, of the BiliCocoon Bag® device. MATERIAL AND METHOD: This was a single-center retrospective cohort study using data of newborns usually collected as part of standard care. Children born in our maternity ward during an 18-month period (August 1, 2020 to January 31, 2022) were included. Causes of jaundice, age at the beginning and mode of treatment, number of sessions for each device, and length of stay were compared. Results are presented as number and percentage with median (25th-75th) or mean (extremes) values for categorical and continuous variables, respectively. A t-test was used to compare the means of the independent groups. RESULTS: A total of 316 newborns were included. Physiological jaundice was the main cause of jaundice. The median age for the first phototherapy treatment was 54.5 h (30-68). The 316 neonates needed 438 phototherapy sessions: 235 (74%) neonates required only one phototherapy session, 85 (36%) of them were treated with the BiliCocoon Bag®. For the 81 children who needed two or more phototherapy sessions, 19 children (23.5%) were treated by tunnel phototherapy and then the BiliCocoon Bag®, and eight children (10%) by BiliCocoon Bag® alone. The BiliCocoon Bag® enabled a relative reduction in the hospitalization rate of 38% and avoided hospitalization for approximately one third of the newborns treated. The BiliCocoon Bag® failure rate was 3.6% and the average length of stay was comparable between the two types of treatment. CONCLUSION: Following a strict protocol of use, the BiliCocoon Bag® is a reliable method and a good alternative to intensive phototherapy for newborns in the maternity ward, as it avoids hospitalization and mother-infant separation.

How an electronic health record became a real-world research resource: comparison between London's Whole Systems Integrated Care database and the Clinical Practice Research Datalink.

BACKGROUND: In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We describe one such local warehouse, the Whole Systems Integrated Care (WSIC) database in NW London, and its potential for research as the "Discover" platform. We compare Discover with the Clinical Practice Research Datalink (CPRD), a popular UK research database also based on linked primary care records. METHODS: We describe the key features of the Discover database, including scope, architecture and governance; descriptive analyses compare the population demographics and chronic disease prevalences with those in CPRD. RESULTS: As of June 2019, Discover held records for a total of 2.3 million currently registered patients, or 95% of the NW London population; CPRD held records for over 11 million. The Discover population matches the overall age-sex distribution of the UK and CPRD but is more ethnically diverse. Most Discover chronic disease prevalences were comparable to the national rates. Unlike CPRD, Discover has identifiable care organisations and postcodes, allowing mapping and linkage to healthcare provider variables such as staffing, and includes contacts with social, community and mental health care. Discover also includes a consent-to-contact register of over 3000 volunteers to date for prospective studies. CONCLUSIONS: Like CPRD, Discover has been a number of years in the making, is a valuable research tool, and can serve as a model for other areas developing similar data warehouses.

Suicide Attempt After Determination of Ineligibility for Assisted Death: A Case Series.

Medical assistance in dying (MAID) and similar right-to-die laws are becoming increasingly common in jurisdictions across North America and elsewhere. To be eligible for MAID in Canada, requesters must have a serious illness, intolerable suffering, and a reasonably foreseeable natural death. They must also undergo two assessments to confirm eligibility. Although a growing body of literature now exists to help clinicians understand and support patients around requests for assisted death, a dearth of literature exists on how best to support those patients who are deemed ineligible. Here, we report on a case series of three patients who attempted suicide after being found ineligible for MAID. Two patients were ineligible because they did not appear to have reasonably foreseeable natural death. The third patient was ineligible because of concerns around decisional capacity. All three cases had previous diagnoses of depressive disorders and mild cognitive impairment, and two cases had histories of suicide attempts. In at-risk patients, we speculate that the period surrounding a finding of MAID ineligibility may represent a period of particular vulnerability. Clinicians must be vigilant and prepared for the possibility of heightened risk, including risk of self-harm, after a finding of ineligibility for assisted death.

Antidepressant and antipsychotic prescribing in primary care for people with dementia.

OBJECTIVE: To use data from the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) to evaluate the prevalence of antidepressant and antipsychotic prescriptions among patients with no previous depression or psychosis diagnoses, and to identify the factors associated with the use of these drugs in this population. DESIGN: Retrospective cohort study using data derived from CPCSSN. SETTING: Primary care practices associated with CPCSSN. PARTICIPANTS: Patients who were born before 1949; who were associated with a CPCSSN primary care practitioner between October 1, 2007, and September 30, 2013; and whose electronic medical records contained data from at least 6 months before and 12 months after the date of dementia diagnosis. MAIN OUTCOME MEASURES: Prescription for an antidepressant or antipsychotic medication in the absence of a depression or psychosis diagnosis. Multivariable models were fitted to determine estimated odds ratios (ORs) and were adjusted for age and sex. RESULTS: Of the 3252 patients without a depression diagnosis, 8.5% received a new prescription for an antidepressant in the 12 months following their diagnosis of dementia. Prescribing was reduced in association with older age (OR of 0.86 per 5-year age increase, P=.001) and male sex (OR=0.77, P=.056), and prescribing increased in association with prescription of cholinesterase inhibitor medications (OR=1.57, P=.003). Of the 4262 patients without a diagnosis of psychosis, 6.1% received a new prescription for an antipsychotic in the 12 months following their diagnosis of dementia. Higher rates of antipsychotic prescriptions were reported in men (OR=1.31, P=.046), those receiving a prescription for steroids (OR=1.90, P=.037), and those diagnosed with Parkinson disease (OR 1.58, P=.051). CONCLUSION: A substantial number of patients with dementia are being prescribed antidepressant or antipsychotic medications by their primary care practitioners without evidence of depression or psychosis in their electronic medical records.

Patient and Public Involvement in Identifying Dementia Research Priorities.

OBJECTIVES: To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia. DESIGN: The Canadian Dementia Priority Setting Partnership (PSP) followed James Lind Alliance PSP methods. Results were compared with the World Health Organization research prioritization exercise and the United Kingdom Dementia PSP. SETTING: Canada. PARTICIPANTS: In the first survey, 1,217 individuals and groups from across Canada submitted their questions about dementia. 249 participated in the interim prioritization. For the final prioritization workshop, the 28 participants included persons with dementia, friends, family, caregivers, health and social care providers, Alzheimer Society representatives, and members of an organization representing long-term care home residents. RESULTS: The Canadian Dementia PSP top 10 priorities relate to health, quality of life, societal issues, and dementia care. Five priorities overlap with one or both of the other two prioritization initiatives. CONCLUSION: These results provide researchers and research funding agencies with topics that individuals with personal or professional experience of dementia prioritize, but they are not intended to preclude research into other aspects of dementia.

Negotiating access to a diagnosis of dementia: Implications for policies in health and social care.

The 'Pathways to Diagnosis' study captured the experience of the prediagnosis period of Alzheimer's disease and related dementias through indepth interviews with 29 persons with dementia and 34 of their family caregivers across four sites: anglophones in Calgary, francophones in Ottawa, Chinese-Canadians in Greater Vancouver and Indo-Canadians in Toronto. In this cross-site analysis, we use the 'Candidacy' framework to comprehensively explore the challenges to securing a diagnosis of dementia in Canada and to develop relevant health and social policy. Candidacy views eligibility for appropriate medical care as a process of joint negotiation between individuals and health services, which can be understood relative to seven dimensions: identification of need, navigation, appearances at services, adjudication by providers, acceptance of/resistance to offers, permeability of services and local conditions. Interviewees experienced challenges relative to each of the seven dimensions and these varied in form and emphasis across the four ethno-linguistic groups.

Role expectations in dementia care among family physicians and specialists.

BACKGROUND: The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. METHODS: Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. RESULTS: Physicians' clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the "bad cop" to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. CONCLUSIONS: Future research could further explore physicians' and other multi-disciplinary members' perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario.

The pathway to diagnosis of dementia for francophones living in a minority situation.

PURPOSE OF THE STUDY: As the prevalence of dementia increases, the pressure to make early diagnoses also increases. Although patients must be able to identify the symptoms to access appropriate services, they may not be equally accessible to all citizens in a multicultural society. Health care professionals and patients may lack a common "first language." This study explores the experience of francophone persons with dementia (PWD) and their caregivers during the peri-diagnostic period. DESIGN AND METHODS: Individual interviews were undertaken to elicit information regarding symptoms, the role of the family and friends, and the access to formal services. Seven PWD and their caregivers who spoke French as their primary language but who lived in a primarily English-speaking region completed the interviews. RESULTS AND IMPLICATIONS: No single symptom seemed sufficient to alert participants that dementia might be present. Participants communicated that there was a dire need to inform the public about the signs of dementia; they spoke of the role of the family physician and the importance of having a long-standing relationship with a health professional. For some, having similar personal characteristics, such as language and culture, might accentuate the strength of the relationship and facilitate the process of diagnosis.

Pathways to dementia diagnosis among South Asian Canadians.

Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada's largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were 'normal'. Family carers' affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.

Substitute consent practices in the face of uncertainty: a survey of Canadian researchers in aging.

BACKGROUND: In Canada and elsewhere, research policies require researchers to secure consent from a legally authorized representative (LAR) for prospective participants unable to consent. Few jurisdictions, however, offer a clear legislative basis for LAR identification. We investigated Canadian researchers' practices regarding the involvement of decisionally incapacitated participants and tested whether reported practices were associated with (1) researchers' understanding of the law on third-party authorization of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative. METHODS: We surveyed researchers in aging from four Canadian provinces about their practices with prospective participants deemed incapable of consent, their understanding of relevant law, and comfort with family consent for research purposes. Understanding and comfort were measured with research vignettes that briefly described hypothetical studies in which an adult who lacks the capacity to consent was invited to participate. RESULTS: Many respondents reported soliciting consent from a family member (45.7% for low-risk studies and 10.7% for serious risks studies), even in jurisdictions where such authority is uncertain at law. Researchers' tendency to solicit family consent was associated with their comfort in doing so, but not with their understanding of the law on substitute consent for research. CONCLUSIONS: Findings underscore the need to clarify who may authorize an incapacitated adult's participation in research. Meanwhile, people should inform their relatives of their desire to participate or not in research in the event of incapacity, given researchers' tendency to turn to family for consent, even where not supported by law.

Are Canadians providing advance directives about health care and research participation in the event of decisional incapacity?

OBJECTIVE: Advance planning for health care and research participation has been promoted as a mechanism to retain some control over one's life, and ease substitute decision making, in the event of decisional incapacity. Limited data are available on Canadians' current advance planning activities. We conducted a postal survey to estimate the frequency with which Canadians communicate their preferences about health care and research should they become incapacitated. METHOD: We surveyed 5 populations (older adults, informal caregivers, physicians, researchers in aging, and research ethics board members) from Nova Scotia, Ontario, Alberta, and British Columbia. We asked respondents whether they had expressed their preferences regarding a substitute decision maker, health care, and research participation in the event of incapacity. RESULTS: Two out of 3 respondents (62.0%; 95% CI 59.1% to 64.8%) had been advised to communicate their health care preferences in advance. Oral expression of wishes was reported by 69.1% of respondents (95% CI 66.8% to 71.3%), and written expression by 46.7% (95% CI 44.3% to 49.2%). Among respondents who had expressed wishes in advance (orally or in writing), 91.2% had chosen a substitute decision maker, 80.9% had voiced health care preferences, and 19.5% had voiced preferences regarding research participation. Having been advised to communicate wishes was a strong predictor of the likelihood of having done so. CONCLUSIONS: Advance planning has increased over the last 2 decades in Canada. Nonetheless, further efforts are needed to encourage Canadians to voice their health care and research preferences in the event of incapacity. Physicians are well situated to promote advance planning to Canadians.

Determining the impact of establishing a psychogeriatric outreach team network in long-term care.

OBJECTIVES: The primary objective of this study was to describe a model for specialized psychogeriatric consultation to long-term care homes in a large metropolitan Canadian city and to provide an overview of the diagnostic and demographic data of patients referred for assessment. METHODS: Forty long-term care homes and 13 geriatric mental health outreach teams were surveyed and provided feedback on the model. A retrospective chart review (N=88) was also conducted to confirm the survey results and to provide an overview of the types of patients being seen. RESULTS: Team data indicated that 96% of the homes they served (N=81) were using their services, that all referrals were appropriate, and that their recommendations were implemented in over 50% of cases. Referred patients tended to be older (41% age 85 or older); were referred mainly for agitation, aggression, or depressed mood (over 90%); and mainly had a mood or cognitive disorder (over 90%). CONCLUSIONS: These preliminary data suggest that the implementation of specialized psychogeriatric consultation to long-term care may be beneficial, but future studies are required to clarify its usefulness.

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

BACKGROUND: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile. METHODS: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario. RESULTS: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent. CONCLUSIONS: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians.

Increasing evidence suggests that early diagnosis and management of dementia-related symptoms may improve the quality of life for patients and their families. However, individuals may wait from 1-3 years from the onset of symptoms before receiving a diagnosis. The objective of this qualitative study was to explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early-stage dementia and their primary carers. From 2006-2009, six Anglo-Canadians with dementia and seven of their carers were recruited from the Alzheimer's Society of Calgary to participate in semi-structured interviews. Using an inductive, thematic approach to the analysis, five major themes were identified: becoming aware of memory problems, attributing meanings to symptoms, initiating help-seeking, acknowledging the severity of cognitive changes and finally obtaining a definitive diagnosis. Individuals with dementia reported noticing memory difficulties earlier than their carers. However, initial symptoms were perceived as ambiguous, and were normalised and attributed to concurrent health problems. The diagnostic process was typically characterised by multiple visits and interactions with health professionals, and a diagnosis was obtained as more severe cognitive deficits emerged. Throughout the diagnostic pathway, carers played dynamic roles. Carers initially served as a source of encouragement to seek help, but they eventually became actively involved over concerns about alternative diagnoses and illness management. A better understanding of the pre-diagnosis period, and the complex interactions between people's beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.

Psychotropic medication use in canadian long-term care patients referred for psychogeriatric consultation.

UNLABELLED: BACKGROUND AND PUSPOSE: Prior studies have shown a high prevalence of psychotropic medication use among patients residing in long-term care homes (LTCHs). The purpose of this study was to examine psychotropic medication use by LTCH patients in a metropolitan Canadian city referred to outreach teams for psychiatric assessment. METHODS: A retrospective review of charts from specialized psychogeriatric outreach teams serving a large metropolitan city in Canada was undertaken. Data from 68 charts were reviewed. Data were analyzed using descriptive and correlational statistics. RESULTS: Antipsychotic medications were the most frequent drugs prescribed to patients referred for psychogeriatric assessment (55.9%), followed by antidepressants (50.0%), cognitive enhancers (44.1%) and benzodiazepines (29.4%). More than a quarter of patients (26.5%) were on three psychotropic medications. Medications were adjusted in 35.3% of cases mostly resulting in dose increases. Only 5.9% of patients had their medication dose reduced. CONCLUSIONS: This preliminary exploratory study suggests that patients referred to specialized outreach teams may be a difficult-to-treat population. Further studies are required to establish effective prescribing practices and service delivery models.

Family physicians and dementia in Canada: Part 1. Clinical practice guidelines: awareness, attitudes, and opinions.

OBJECTIVE: To assess Canadian family physicians' awareness of, attitudes toward, and use of the 1999 Canadian Consensus Conference on Dementia (CCCD) clinical practice guidelines (CPGs); to explore the barriers and enablers to implementing dementia CPGs in clinical practice; and to identify more effective strategies for future dementia guideline development and dissemination. DESIGN: Qualitative study using focus groups. SETTING: Academic family practice clinics in Calgary, Alta, Ottawa, Ont, and Toronto, Ont. PARTICIPANTS: Eighteen family physicians. METHODS: Using a semistructured interview guide, we conducted 4 qualitative focus groups of 4 to 6 family physicians whose practices we had audited in a previous study. Transcripts were coded using an inductive data analytic strategy, and categories and themes were identified and described using the principles of thematic analysis. MAIN FINDINGS: Four major themes emerged from the focus group discussions. Family physicians 1) were minimally aware of the existence and the detailed contents of the CCCD guidelines; 2) had strong views about the purposes of guidelines in general; 3) expressed strong concerns about the role of the pharmaceutical industry in the development of such guidelines; and 4) had many ideas to improve future dementia guidelines and CPGs in general. CONCLUSION: Family physicians were minimally aware of the 1999 CCCD CPGs. They acknowledged, however, the potential of future CPGs to assist them in patient care and offered many strategies to improve the development and dissemination of future dementia guidelines. Future guidelines should more accurately reflect the day-to-day practice experiences and challenges of family physicians, and guideline developers should also be cognizant of family physicians' perceptions that pharmaceutical companies' funding of CPGs undermines the objectivity and credibility of those guidelines.

Family physicians and dementia in Canada: Part 2. Understanding the challenges of dementia care.

OBJECTIVE: To explore the challenges Canadian family physicians face in providing dementia care. DESIGN: Qualitative study using focus groups. SETTING: Academic family practice clinics in Calgary, Alta, Ottawa, Ont, and Toronto, Ont. PARTICIPANTS: Eighteen family physicians. METHODS: We conducted 4 qualitative focus groups of 4 to 6 family physicians whose practices we had audited in a previous study. Focus group transcripts were analyzed using the principles of thematic analysis. MAIN FINDINGS: Five major themes related to the provision of dementia care by family physicians emerged: 1) diagnostic uncertainty; 2) the complexity of dementia; 3) time as a paradox in the provision of dementia care; 4) the importance of patients' families; 5) and familiarity with patients. Participants expressed uncertainty about diagnosing dementia and a strong need for expert verification of diagnoses owing to the complexity of dementia. Time, patients' family members, and familiarity with patients were seen as both barriers and enablers in the provision of dementia care. CONCLUSION: Family physicians face many challenges in providing dementia care. The results of this study and the views of family physicians should be considered in the development and dissemination of future dementia guidelines, as well as by specialist colleagues, policy makers, and those involved in developing continuing physician education about dementia.