"Cancer's a demon": a qualitative study of fear and multilevel factors contributing to cancer treatment delays.

PURPOSE: Delays initiating cancer therapy are increasingly common, impact outcomes, and have implications for health equity. However, it remains unclear (1) whether patients' beliefs regarding acceptable diagnostic to treatment intervals align with current guidelines, and (2) to what degree psychological factors contribute to longer intervals. We conducted a qualitative study with patients and cancer care team members ("providers"). METHODS: We interviewed patients with several common solid tumors as well as providers. Interviews were analyzed using an interpretive approach, guided by modified grounded theory. RESULTS: Twenty-two patients and 12 providers participated. Half of patients had breast cancer; 27% waited >60 days between diagnosis and treatment. Several themes emerged. (1) Patients felt treatment should begin immediately following diagnosis, while providers' opinion on the goal timeframe to start treatment varied. (2) Patients experienced psychological distress while waiting for treatment. (3) Participants identified logistical, social, and psychological sources of delay. Fear related to multiple aspects of cancer care was common. Emotion-driven barriers could manifest as not taking steps to move ahead, or as actions that delayed care. (4) Besides addressing logistical challenges, patients believed that education and anticipatory guidance, from their care team and from peers, may help overcome psychological barriers to treatment and facilitate the start of therapy. CONCLUSIONS: Patients feel an urgency to start cancer therapy, desiring time frames shorter than those included in guidelines. Psychological distress is frequently both a contributor to, and a consequence of, treatment delays. Addressing multilevel barriers, including psychological ones, may facilitate timely treatment and reduce distress.

Pharmacists' experiences with the Bloom Program application process.

BACKGROUND: The Bloom Program, which began as a demonstration project, is an ongoing community pharmacy-based mental illness and addictions program funded by the government of Nova Scotia. To be eligible to offer the Bloom Program, interested pharmacists were required to complete a 9-part application on behalf of their pharmacies. A process evaluation was conducted to inform future program implementation changes of program components, including the application process. METHODS: Qualitative interviews from 24 pharmacists were inductively analyzed to determine the challenges and opportunities in the program's application process. RESULTS: Key and impactful components of the application process included training, providing a mental health and addictions resource centre within the pharmacy and completing outreach activities with local mental health and addictions services and support organizations. The training content and format for the program was highly valued. Community outreach to local mental health and addictions resources, and other health care resources in the community, was particularly valuable in supporting patient navigation of the health care system and extending the pharmacists' networks. Components of the application process were challenging for many pharmacists but were beneficial personally and professionally. Dedicated resources (e.g., time and staffing) are required for the efficient completion of the application process. CONCLUSION: Pharmacists viewed the Bloom Program application process as intensive yet necessary and relevant for preparing to deliver the Program. The demonstration project process evaluation was essential for elucidating the strengths of the application process and, importantly, identifying areas for improvement. Can Pharm J (Ott) 2021;154:xx-xx.

Parent Perceptions on Transfers to Pediatric Emergency Departments and the Role of Telemedicine.

OBJECTIVE: Real-time audiovisual consultation (telemedicine) has been proven feasible and is a promising alternative to interfacility transfer. We sought to describe caregiver perceptions of the decision to transfer his or her child to a pediatric emergency department and the potential use of telemedicine as an alternative to transfer. METHODS: Semistructured interviews of caregivers of patients transferred to a pediatric emergency department. Purposive sampling was used to recruit caregivers of patients who were transferred from varying distances and different times of the day. Interviews were conducted in person or on the phone by a trained interviewer. Interviews were recorded, transcribed, and analyzed using modified grounded theory. RESULTS: Twenty-three caregivers were interviewed. Sixteen (70%) were mothers; 57% of patients were transported from hospitals outside of the city limits. Most caregivers reported transfer for a specific resource need, such as a pediatric subspecialist. Generally, caregivers felt that the decision to transfer was made unilaterally by the treating physician, although most reported feeling comfortable with the decision. Almost no one had heard about telemedicine; after hearing a brief description, most were receptive to the idea. Caregivers surmised that telemedicine could reduce the risks and cost associated with transfer. However, many felt telemedicine would not be applicable to their particular situation. CONCLUSIONS: In this sample, caregivers were comfortable with the decision to transfer their child and identified potential benefits of telemedicine as either an adjunct to or replacement of transfer. As hospitals use advanced technology, providers should consider families' opinions about risks and out-of-pocket costs and tailoring explanations to address individual situations.

The patient experience in a community pharmacy mental illness and addictions program.

BACKGROUND: The Bloom Program was designed to enhance pharmacists' care of people with lived experience of mental illness and addictions in Nova Scotia. The Program's demonstration period was from September 2014 to December 2016 and included a qualitative evaluation of the patient experience. METHODS: Patients were recruited for individual interviews through Bloom Program pharmacies. Interviews were transcribed verbatim and analyzed following Braun and Clarke's 6-step approach for thematic analysis. RESULTS: Ten patients were interviewed between May and June 2016. Ten themes were determined through data analysis and included medication management, accessing pharmacists in a new way, providing social support, bridging service gaps, providing interim care, reducing financial barriers, navigation and advocacy, holistic approaches, empowerment through knowledge and awareness and collaboration. DISCUSSION: Pharmacists expectedly provided medication management activities to patients for both physical and mental health concerns in the Bloom Program. Many activities conducted with Bloom Program patients fell outside of dispensing roles and medication management. These activities, such as social support, triage, navigation and increasing access, which were highly valued by patients, are poorly measured and assessed in pharmacy practice research. CONCLUSION: Participants in the Bloom Program reported the significant contributions of pharmacists and pharmacy teams in their overall health and wellness. Future evaluations of interventions like the Bloom Program should include measurement of constructs valued by patients and also consider impacts on inequalities and inequities. Pharmacy practice researchers can benefit from other research and evaluation being conducted for primary care interventions.

Patient care activities by community pharmacists in a capitation funding model mental health and addictions program.

BACKGROUND: Community pharmacists are autonomous, regulated health care professionals located in urban and rural communities in Canada. The accessibility, knowledge, and skills of community pharmacists can be leveraged to increase mental illness and addictions care in communities. METHODS: The Bloom Program was designed, developed, and implemented based on the Behaviour Change Wheel and a program of research in community pharmacy mental healthcare capacity building. We evaluated the Bloom Program as a demonstration project using mixed methods. A retrospective chart audit was conducted to examine outcomes and these are reported in this paper. RESULTS: We collected 201 patient charts from 23 pharmacies in Nova Scotia with 182 patients having at least one or more follow-up visits. Anxiety (n = 126, 69%), depression (n = 112, 62%), and sleep disorders (n = 64, 35%) were the most frequent mental health problems. Comorbid physical health problems were documented in 57% (n = 104). The average number of prescribed medications was 5.5 (range 0 to 24). Sixty seven percent (n = 122) were taking multiple psychotropics and 71% (n = 130) reported taking more than one medication for physical health problems. Treatment optimization was the leading reason for enrollment with more than 80% seeking improvements in symptom management and daily functioning. There were a total of 1233 patient-care meetings documented, of which the duration was recorded in 1098. The median time for enrolling, assessing, and providing follow-up care by pharmacists was 142 min (mean 176, SD 128) per patient. The median follow-up encounter duration was 15 min. A total of 146 patient care encounters were 60 min or longer, representing 13.3% of all timed encounters. CONCLUSIONS: Pharmacists work with patients with lived experience of mental illness and addictions to improve medication related outcomes including those related to treatment optimization, reducing polytherapy, and facilitating withdrawal from medications. Pharmacists can offer their services frequently and routinely without the need for an appointment while affording patient confidentiality and privacy. Important roles for pharmacists around the deprescribing of various medications (e.g., benzodiazepines) have previously been supported and should be optimized and more broadly implemented. Further research on the best mechanisms to incentivize pharmacists in mental illness and addiction's care should be explored.

Mapping patient-identified barriers and facilitators to retention in HIV care and antiretroviral therapy adherence to Andersen's Behavioral Model.

Andersen's Behavioral Model (ABM) provides a framework for understanding how patient and environmental factors impact health behaviors and outcomes. We compared patient-identified barriers/facilitators to retention in care and antiretroviral therapy (ART) adherence and evaluated how they mapped to ABM. Qualitative semi-structured interviews with 51 HIV-infected adults at HIV clinics in Philadelphia, PA, in 2013 were used to explore patients' experiences with HIV care and treatment. Interview data were analyzed for themes using a grounded theory approach. Among those interviewed, 53% were male and 88% were nonwhite; 49% were retained in care, 96% were on ART, and 57% were virally suppressed. Patients discussed 18 barriers/facilitators to retention in care and ART adherence: 11 common to both behaviors (stigma, mental illness, substance abuse, social support, reminder strategies, housing, insurance, symptoms, competing life activities, colocation of services, provider factors), 3 distinct to retention (transportation, clinic experiences, appointment scheduling), and 4 distinct to adherence (medication characteristics, pharmacy services, health literacy, health beliefs). Identified barriers/facilitators mapped to all ABM domains. These data support the use of ABM as a framework for classifying factors influencing HIV-specific health behaviors and have the potential to inform the design of interventions to improve retention in care and ART adherence.

Barriers and facilitators to patient retention in HIV care.

BACKGROUND: Retention in HIV care improves survival and reduces the risk of HIV transmission to others. Multiple quantitative studies have described demographic and clinical characteristics associated with retention in HIV care. However, qualitative studies are needed to better understand barriers and facilitators. METHODS: Semi-structured interviews were conducted with 51 HIV-infected individuals, 25 who were retained in care and 26 not retained in care, from 3 urban clinics. Interview data were analyzed for themes using a modified grounded theory approach. Identified themes were compared between the two groups of interest: patients retained in care and those not retained in care. RESULTS: Overall, participants identified 12 barriers and 5 facilitators to retention in HIV care. On average, retained individuals provided 3 barriers, while persons not retained in care provided 5 barriers. Both groups commonly discussed depression/mental illness, feeling sick, and competing life activities as barriers. In addition, individuals not retained in care commonly reported expensive and unreliable transportation, stigma, and insufficient insurance as barriers. On average, participants in both groups referenced 2 facilitators, including the presence of social support, patient-friendly clinic services (transportation, co-location of services, scheduling/reminders), and positive relationships with providers and clinic staff. CONCLUSIONS: In our study, patients not retained in care faced more barriers, particularly social and structural barriers, than those retained in care. Developing care models where social and financial barriers are addressed, mental health and substance abuse treatment is integrated, and patient-friendly services are offered is important to keeping HIV-infected individuals engaged in care.

Readability of Patient Education Materials in Head and Neck Cancer: A Systematic Review.

Importance: Patient education materials (PEMs) can promote patient engagement, satisfaction, and treatment adherence. The American Medical Association recommends that PEMs be developed for a sixth-grade or lower reading level. Health literacy (HL) refers to an individual's ability to seek, understand, and use health information to make appropriate decisions regarding their health. Patients with suboptimal HL may not be able to understand or act on health information and are at risk for adverse health outcomes. Objective: To assess the readability of PEMs on head and neck cancer (HNC) and to evaluate HL among patients with HNC. Evidence Review: A systematic review of the literature was performed by searching Cochrane, PubMed, and Scopus for peer-reviewed studies published from 1995 to 2024 using the keywords head and neck cancer, readability, health literacy, and related synonyms. Full-text studies in English that evaluated readability and/or HL measures were included. Readability assessments included the Flesch-Kincaid Grade Level (FKGL grade, 0-20, with higher grades indicating greater reading difficulty) and Flesch Reading Ease (FRE score, 1-100, with higher scores indicating easier readability), among others. Reviews, conference materials, opinion letters, and guidelines were excluded. Study quality was assessed using the Appraisal Tool for Cross-Sectional Studies. Findings: Of the 3235 studies identified, 17 studies assessing the readability of 1124 HNC PEMs produced by professional societies, hospitals, and others were included. The mean FKGL grade ranged from 8.8 to 14.8; none of the studies reported a mean FKGL of grade 6 or lower. Eight studies assessed HL and found inadequate HL prevalence ranging from 11.9% to 47.0%. Conclusions and Relevance: These findings indicate that more than one-third of patients with HNC demonstrate inadequate HL, yet none of the PEMs assessed were developed for a sixth grade or lower reading level, as recommended by the American Medical Association. This incongruence highlights the need to address the readability of HNC PEMs to improve patient understanding of the disease and to mitigate potential barriers to shared decision-making for patients with HNC. It is crucial to acknowledge the responsibility of health care professionals to produce and promote more effective PEMs to dismantle the potentially preventable literacy barriers.

Developing a Research Agenda for Adults with Complex Health and Social Needs.

This work presents a research agenda addressing the needs of adults with complex health and social needs (ACHSN) formulated through an engagement process fostering cross-stakeholder group communication, shared understanding of identified issues, and mutual commitment to improving care for ACHSN. Nominal group technique and stakeholder interviews were used to develop prioritized stakeholder consensus regarding health issues, barriers, and solutions affecting ACHSN. The engagement process culminated in two stakeholder meetings with all stakeholders to review, process, and develop a shared understanding of the findings. Issues prioritized for future research included the conditions of mental health, diabetes, and addiction; and interventions addressing the barriers of comorbidities, support for mental health, and cost of care/logistics. Notable areas of alignment and variance existed across stakeholder perspectives. Emphasized themes especially relevant to future research included the importance of grounding interventions in multi-stakeholder shared understanding and active inclusion of the patient voice.

The MAPP approach: using community health status assessment for performance improvement.

The National Association of County and City Health Officials (NACCHO) is the national organization representing local health departments. NACCHO supports efforts that protect and improve the health of all people and all communities by promoting national policy, developing resources and programs, seeking health equity, and supporting effective local public health practice and systems.

Realities of environmental toxicity and their ramifications for community engagement.

Research on community responses to environmental toxicity has richly described the struggles of citizens to identify unrecognized toxins, collect their own environmental health facts, and use them to lobby authorities for recognition and remediation. Much of this literature is based on an empiricist premise: it is concerned with exploring differences in how laypeople and experts perceive what is presumed to be a singular toxic reality that preexists these varying perspectives. Here, we seek to reexamine this topic by shifting the focus from facts to facticity-that is, by exploring the many types of knowledge that communities develop about toxicity and how these knowledges articulate with the ideas of scientific and governmental authorities about what kinds of information are valid bases for policymaking. In making this shift, we are influenced by work in semiotic anthropology and science and technology studies (STS), which emphasizes that lived experience generates distinct realities rather than different perceptions of the same underlying state. Using this framework, we present an analysis of oral history interviews conducted in 2013-14 in the small American town of Ambler, Pennsylvania. Part of Ambler's legacy as a nineteenth- and twentieth-century center of asbestos manufacture is that it is home to two massive asbestos-containing waste sites, one of which was being remediated by the Environmental Protection Agency (EPA) at the time of this study. Our interviews demonstrate that even asbestos, a toxin with a well-established public narrative, is a fundamentally different object for different members of the Ambler community. For many of these individuals, the epistemology and practices of the EPA are incongruent with or tangential to their toxicity-related experiences and their consequent concerns for the future. As such, our findings suggest caution in framing the community engagement efforts of environmental health agencies primarily as facilitations of citizen science; this approach does not acknowledge the multiplicity of toxic realities.