Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process.

PURPOSE: Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer. METHODS: In Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months. RESULTS: From interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process. CONCLUSION: A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.

A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity.

BACKGROUND: Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. METHODS: The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. RESULTS: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. CONCLUSION: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.

Development and Evaluation of a Virtual Model for Fetal Alcohol Spectrum Disorder (FASD) Assessment and Diagnosis in Children: A Pilot Study.

The diagnostic process for fetal alcohol spectrum disorder (FASD) involves a multi-disciplinary team and includes neurodevelopmental, physical, and facial assessments and evidence of prenatal alcohol exposure during the index pregnancy. With the increased use of virtual care in health care due to the pandemic, and desire of clinics to be more efficient when providing timely services, there was a need to develop a virtual diagnostic model for FASD. This study develops a virtual model for the entire FASD assessment and diagnostic process, including individual neurodevelopmental assessments. It proposes a virtual model for assessment and diagnosis of FASD in children and evaluates the functionality of this model with other national and international FASD diagnostic teams and caregivers of children being assessed for FASD.

Association between Goals of Care Designation orders and health care resource use among seriously ill older adults in acute care: a multicentre prospective cohort study.

BACKGROUND: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization. METHODS: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city). RESULTS: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20). INTERPRETATION: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

Content of Serious Illness Care conversation documentation is associated with goals of care orders-a quantitative evaluation in hospital.

BACKGROUND: The Serious Illness Care Program (SICP) increases quality of documentation about patients' values and priorities, but it is not known whether patient characteristics and goals of care are associated with the elements documented. The purpose of this study was to explore for associations between the quantity and type of elements documented after SICP conversations with patient characteristics and goals of care order. METHODS: Documentation of SICP conversations by internal medicine physicians with hospitalized patients was evaluated in a retrospective chart review between March 2018 to December 2019. The conversations occurred after SICP implementation in a Tertiary Hospital, Medical teaching unit which uses "Goals of Care Designation" (GCD) medical orders to communicate a patient's general intent, specific interventions, and preferred locations of care. A validated SICP codebook was used to determine the frequency of conversation elements documented for (1) Goals and Values; (2) Prognosis/illness understanding; (3) End-of-life care planning and (4) GCD/Life-sustaining treatment preferences. Univariate and multivariate generalized linear models were used to analyze associations between quantity of elements documented and patient characteristics (age, gender, frailty, language spoken and GCD). RESULTS: Of 175 SICP conversations documented, in the univariate analysis more goals and values were documented for patients who understand/speak English (0.89; 95% CI: 0.14 - 1.63) and more content was recorded for patients with a non-resuscitative GCD focus ("Medical": 2.42; 95% CI: 1.51 - 3.33; "Comfort": 1.06; 95% CI: 0.24 - 1.88) although not in all domains. In the multivariate analysis, controlling for age, gender, language and frailty, the association between content scores and GCD remained highly significant. Patients with a non-resuscitative GCD had higher total domain scores than those with a resuscitative GCD ("Medical": 1.27 95% CI: 0.42-2.13; "Comfort": 2.67, 95% CI:1.71-3.62). CONCLUSION: The type of content documented by physicians after a SICP conversation is associated with the patient's goals of care.

BABEL (Better tArgeting, Better outcomes for frail ELderly patients) advance care planning: a comprehensive approach to advance care planning in nursing homes: a cluster randomised trial.

BACKGROUND: Nursing home (NH) residents should have the opportunity to consider, discuss and document their healthcare wishes. However, such advance care planning (ACP) is frequently suboptimal. OBJECTIVE: Assess a comprehensive, person-centred ACP approach. DESIGN: Unblinded, cluster randomised trial. SETTING: Fourteen control and 15 intervention NHs in three Canadian provinces, 2018-2020. SUBJECTS: 713 residents (442 control, 271 intervention) aged ≥65 years, with elevated mortality risk. METHODS: The intervention was a structured, $\sim$60-min discussion between a resident, substitute decision-maker (SDM) and nursing home staff to: (i) confirm SDMs' identities and role; (ii) prepare SDMs for medical emergencies; (iii) explain residents' clinical condition and prognosis; (iv) ascertain residents' preferred philosophy to guide decision-making and (v) identify residents' preferred options for specific medical emergencies. Control NHs continued their usual ACP processes. Co-primary outcomes were: (a) comprehensiveness of advance care planning, assessed using the Audit of Advance Care Planning, and (b) Comfort Assessment in Dying. Ten secondary outcomes were assessed. P-values were adjusted for all 12 outcomes using the false discovery rate method. RESULTS: The intervention resulted in 5.21-fold higher odds of respondents rating ACP comprehensiveness as being better (95% confidence interval [CI] 3.53, 7.61). Comfort in dying did not differ (difference = -0.61; 95% CI -2.2, 1.0). Among the secondary outcomes, antimicrobial use was significantly lower in intervention homes (rate ratio = 0.79, 95% CI 0.66, 0.94). CONCLUSIONS: Superior comprehensiveness of the BABEL approach to ACP underscores the importance of allowing adequate time to address all important aspects of ACP and may reduce unwanted interventions towards the end of life.

Applying the Knowledge-to-Action Framework to Engage Stakeholders and Solve Shared Challenges with Person-Centered Advance Care Planning in Long-Term Care Homes.

As they near the end of life, long term care (LTC) residents often experience unmet needs and unnecessary hospital transfers, a reflection of suboptimal advance care planning (ACP). We applied the knowledge-to-action framework to identify shared barriers and solutions to ultimately improve the process of ACP and improve end-of-life care for LTC residents. We held a 1-day workshop for LTC residents, families, directors/administrators, ethicists, and clinicians from Manitoba, Alberta, and Ontario. The workshop aimed to identify: (1) shared understandings of ACP, (2) barriers to respecting resident wishes, and (3) solutions to better respect resident wishes. Plenary and group sessions were recorded and thematic analysis was performed. We identified four themes: (1) differing provincial frameworks, (2) shared challenges, (3) knowledge products, and 4) ongoing ACP. Theme 2 had four subthemes: (i) lacking clarity on substitute decision maker (SDM) identity, (ii) lacking clarity on the SDM role, (iii) failing to share sufficient information when residents formulate care wishes, and (iv) failing to communicate during a health crisis. These results have informed the development of a standardized ACP intervention currently being evaluated in a randomized trial in three Canadian provinces.

Clinicians' Perspectives After Implementation of the Serious Illness Care Program: A Qualitative Study.

Importance: Discussions about goals of care with patients who are seriously ill typically occur infrequently and late in the illness trajectory, are of low quality, and focus narrowly on the patient's resuscitation preferences (ie, code status), risking provision of care that is inconsistent with patients' values. The Serious Illness Care Program (SICP) is a multifaceted communication intervention that builds capacity for clinicians to have earlier, more frequent, and more person-centered conversations. Objective: To explore clinicians' experiences with the SICP 1 year after implementation. Design, Setting, and Participants: This qualitative study was conducted at 2 tertiary care hospitals in Canada. The SICP was implemented at Hamilton General Hospital (Hamilton, Ontario) from March 1, 2017, to January 19, 2018, and at Foothills Medical Centre (Calgary, Alberta) from March 1, 2018, to December 31, 2020. A total of 45 clinicians were invited to participate in the study, and 23 clinicians (51.1%) were enrolled and interviewed. Semistructured interviews of clinicians were conducted between August 2018 and May 2019. Content analysis was used to evaluate information obtained from these interviews between May 2019 and May 2020. Exposures: The SICP includes clinician training, communication tools, and processes for system change. Main Outcomes and Measures: Clinicians' experiences with and perceptions of the SICP. Results: Among 23 clinicians interviewed, 15 (65.2%) were women. The mean (SD) number of years in practice was 14.6 (9.1) at the Hamilton site and 12.0 (6.9) at the Calgary site. Participants included 19 general internists, 3 nurse practitioners, and 1 social worker. The 3 main themes were the ways in which the SICP (1) supported changes in clinician behavior, (2) shifted the focus of goals-of-care conversations beyond discussion of code status, and (3) influenced clinicians personally and professionally. Changes in clinician behavior were supported by having a unit champion, interprofessional engagement, access to copies of the Serious Illness Conversation Guide, and documentation in the electronic medical record. Elements of the program, especially the Serious Illness Conversation Guide, shifted the focus of goals-of-care conversations beyond discussion of code status and influenced clinicians on personal and professional levels. Concerns with the program included finding time to have conversations, building transient relationships, and limiting conversation fluidity. Conclusions and Relevance: In this qualitative study, hospital clinicians described components of the SICP as supporting changes in their behavior and facilitating meaningful patient interactions that shifted the focus of goals-of-care conversations beyond discussion of code status. The perceived benefits of SICP implementation stimulated uptake within the medical units. These findings suggest that the SICP may prompt hospital culture changes in goals-of-care dialogue with patients and the care of hospitalized patients with serious illness.

Baseline Fecal Microbiota in Pediatric Patients With Celiac Disease Is Similar to Controls But Dissimilar After 1 Year on the Gluten-Free Diet.

The objectives of this pilot study were to examine fecal microbiota composition of pediatric patients with celiac disease (CD) before and after a 1-year gluten-free diet (GFD) and to determine the association with symptoms and anti-tissue transglutaminase (aTTG) antibody. Methods: Stool samples were obtained from pediatric patients with CD and from healthy controls. Patients were classified by the presence (diarrhea, abdominal pain, weight loss) or absence (asymptomatic, headache, fatigue, etc.) of typical CD gastrointestinal symptoms and by aTTG normalization post-GFD intervention (< 7 U/mL). Fecal microbial composition was measured using 16S ribosomal RNA gene amplicon sequencing of the V3-V4 region. Results: At diagnosis, 13 of 22 patients with CD had typical gastrointestinal symptoms, the remaining patients having atypical or asymptomatic presentations. After a 1-year GFD, all symptomatic patients improved and 9 of 19 had normalized aTTG. Prior to GFD, no distinct microbial signature was observed between patients and controls (P = 0.39). Post-GFD, patients with CD had a unique microbial signature with reductions in known fiber-degrading bacteria, including Blautia, Dorea, Lactobacillus, and Prevotella compared with controls. Within the patients with CD, microbial composition was not associated with reported symptom presentation or aTTG normalization. Conclusions: Pediatric patients with CD only had a unique microbial signature compared with healthy controls when placed on the GFD. These results suggest that pediatric patients with CD may not have a unique fecal microbial signature indicative of inherent dysbiosis, in contrast to that suggested for older patients. In children with CD, diet may play a role in shaping microbial composition more so than disease status.

A single nucleotide polymorphism genetic risk score to aid diagnosis of coeliac disease: a pilot study in clinical care.

BACKGROUND: Single nucleotide polymorphism-based genetic risk scores (GRS) model genetic risk as a continuum and can discriminate coeliac disease but have not been validated in clinic. Human leukocyte antigen (HLA) DQ gene testing is available in clinic but does not include non-HLA attributed risk and is limited by discrete risk stratification. AIMS: To accurately characterise both HLA and non-HLA coeliac disease genetic risk as a single nucleotide polymorphism-based GRS and evaluate diagnostic utility. METHODS: We developed a 42 single nucleotide polymorphism coeliac disease GRS from a European case-control study (12 041 cases vs 12 228 controls) using HLA-DQ imputation and published genome-wide association studies. We validated the GRS in UK Biobank (1237 cases) and developed direct genotyping assays. We tested the coeliac disease GRS in a pilot clinical cohort of 128 children presenting with suspected coeliac disease. RESULTS: The GRS was more discriminative of coeliac disease than HLA-DQ stratification in UK Biobank (receiver operating characteristic area under the curve [ROC-AUC] = 0.88 [95% CIs: 0.87-0.89] vs 0.82 [95% CIs: 0.80-0.83]). We demonstrated similar discrimination in the pilot clinical cohort (114 cases vs 40 controls, ROC-AUC = 0.84 [95% CIs: 0.76-0.91]). As a rule-out test, no children with coeliac disease in the clinical cohort had a GRS below 38th population centile. CONCLUSIONS: A single nucleotide polymorphism-based GRS may offer more effective and cost-efficient testing of coeliac disease genetic risk in comparison to HLA-DQ stratification. As a comparatively inexpensive test it could facilitate non-invasive coeliac disease diagnosis but needs detailed assessment in the context of other diagnostic tests and against current diagnostic algorithms.

How to increase public participation in advance care planning: findings from a World Café to elicit community group perspectives.

BACKGROUND: In 2014, Alberta, Canada broke new ground in having the first provincial healthcare policy and procedure for advance care planning (ACP), the process of communicating and documenting a person's future healthcare preferences. However, to date public participation and awareness of ACP remains limited. The aim of this initiative was to elicit community group perspectives on how to help people learn about and participate in ACP. METHODS: Targeted invitations were sent to over 300 community groups in Alberta (e.g. health/disease, seniors/retirement, social/service, legal, faith-based, funeral planning, financial, and others). Sixty-seven participants from 47 community groups attended a "World Café". Participants moved between tables at fixed time intervals, and in small groups discussed three separate ACP-related questions. Written comments were captured by participants and facilitators. Each comment was coded according to Michie et al.'s Theoretical Domains Framework, and mapped to the Capability, Opportunity and Motivation behavior change system (COM-B) in order to identify candidate intervention strategies. RESULTS: Of 800 written comments, 76% mapped to the Opportunity: Physical COM-B component of behavior, reflecting a need for access to ACP resources. The most common intervention functions identified pertained to Education, Environmental Restructuring, Training, and Enablement. We synthesized the intervention functions and qualitative comments into eight recommendations for engaging people in ACP. These pertain to access to informational resources, group education and facilitation, health system processes, use of stories, marketing, integration into life events, inclusion of business partners, and harmonization of terminology. CONCLUSIONS: There was broad support for the role of community groups in promoting ACP. Eight recommendations for engaging the public in ACP were generated and have been shared with stakeholders.