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.
Key Points Question What were hospital clinicians’ experiences and perceptions of the Serious Illness Care Program (SICP), a multifaceted capacity-building intervention to improve communication with patients who are seriously ill? Findings In this qualitative study including 23 clinicians from 2 hospitals in Canada, clinicians stated that the various structural and organizational elements of the SICP supported changes in their behavior, shifted the focus of goals-of-care conversations beyond discussion of resuscitation preferences (ie, code status), and influenced them on personal and professional levels. Meaning The findings of this study suggest that clinicians may find the SICP helpful in supporting them to engage in meaningful communication that goes beyond discussion of code status with patients who are hospitalized with serious illness.
Summary 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.
Palliative care (pc) is part of the recommended standard of care for patients with advanced cancer. Nevertheless, delivery of pc is inconsistent. Patients who could benefit from pc services are often referred late—or not at all. In planning for improvements to oncology pc practice in our health care system, we sought to identify barriers to the provision of earlier pc, as perceived by health care providers managing patients with metastatic colorectal cancer (mcrc). We used the Michie Theoretical Domains Framework (tdf) and Behaviour Change Wheel (bcw), together with knowledge of previously identified barriers, to develop a 31-question survey. The survey was distributed by e-mail to mcrc health care providers, including physicians, nurses, and allied staff. Responses were obtained from 57 providers (40% response rate).The most frequently cited barriers were opportunity-related—specifically, lack of time, of clinic space for consultations, and of access to specialist pc staff or services. Qualitative responses revealed that resource limitations varied by cancer centre location. In urban centres, time and space were key barriers. In rural areas, access to specialist pc was the main limiter. Self-perceived capability to manage pc needs was a barrier for 40% of physicians and 30% of nurses. Motivation was the greatest facilitator, with 89% of clinicians perceiving that patients benefit from pc. Based on the Michie tdf and bcw model, interventions that best address the identified barriers are enablement and environmental restructuring. Those findings are informing the development of an intervention plan to improve oncology pc practices in a publicly funded health care system.
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