A qualitative study of lymphoma survivors living in rural Georgia was conducted using 12 individual semistructured telephone interviews. The travel distance was the greatest barrier to care, with other issues including communication and navigating between local clinics and larger cancer centers. The participants saw technology as an important solution and detailed their research priorities. Background: We gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies. Patients and Methods: We conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development. Results: The greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities. Conclusion: These findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.
Background Long-acting injectable (LAI) antiretroviral therapy (ART) has the potential to improve medication adherence, reduce HIV stigma, and promote equity in care outcomes among people with HIV (PWH). We describe our early experience implementing LAI-cabotegravir/rilpivirine (CAB/RPV) for maintenance HIV-1 treatment. Methods We launched a pilot LAI-ART program at a large Ryan White-funded clinic in the Southeast, accepting provider-initiated referrals from 4/14/2021—12/1/2021. Our interdisciplinary program team (Clinician-Pharmacy-Nursing) verified clinical eligibility and pursued medication access for eligible patients. We describe demographic and clinical variables of PWH referred and enrolled, and early outcomes among those accessing LAI-CAB/RPV. Results Among 58 referrals, characteristics were median age 39 (Q1-Q3 30.25-50) years, 74% male, 81% Black, and payor source distribution was 26% Private, 21% Medicare, 19% Medicaid, and 34% ADAP. Forty-five patients (78%) met clinical eligibility for LAI-CAB/RPV; ineligibility concerns included evidence of confirmed or possible RPV resistance (n = 8), HIV non-suppression (n = 3), possible RPV hypersensitivity (n = 1), and pregnancy (n = 1). Among 45 eligible PWH, 39 (87%) enrolled and 15 (38%) initiated LAI-CAB/RPV after a median of 47 (Q1-Q3 31-95) days since enrollment. Conclusions Implementing LAI-ART at a Southern U.S. Ryan White-funded clinic has been challenged by substantial human resource capital to attain drug, administer injections, support enrolled patients; delayed therapy initiation due to insurance denials; patient ineligibility primarily due to possible RPV resistance; and inability to provide drug regardless of payor source. These barriers may perpetuate disparities in ART access and outcomes among PWH and should be urgently addressed so that LAI-ART can be offered equitably.
Background Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities. Methods In the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes. Results The majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship‐oriented research and more studies regarding quality of life and mental health. Conclusions The results of the current study identified unmet needs in clinical care and patient‐oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well‐being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.
Use of long-acting injectable antiretroviral therapy (LAI-ART) depends on patient awareness, provider discussion, and patient willingness to use. We conducted a post-visit survey with patients at three HIV clinics in San Francisco, Chicago, and Atlanta in May 2021 to assess for inequities in these early implementation phases.
Background: With more than 80% of Hodgkin lymphoma patients being cured and non-Hodgkin lymphoma 10-year survival rates improving, there has been a dramatic growth in the number of lymphoma survivors. Despite these successes, survivors are often left coping with adverse outcomes resulting from cancer treatment. Research examining the needs of lymphoma survivors and their caregivers is needed as this population continues to grow. Objective: We conducted a qualitative study with lymphoma survivors and caregivers to: 1) determine perceived needs and priorities regarding lymphoma care and 2) examine views, understanding, and priorities for participation in therapeutic and non-therapeutic research studies. Methods: The qualitative study consisted of two phases: semi-structured focus groups and individual semi-structured telephone interviews. In Phase I, two semi-structured focus groups were conducted in 2017 with lymphoma survivors (n=8) and caregivers (n=7) recruited among attendees of regional and national lymphoma patient education conferences. Participants were asked to discuss their experiences, opinions, and priorities for lymphoma care and research. Results from the focus groups informed the telephone individual interview guide. In Phase II, researchers conducted 19 individual semi-structured phone interviews in the spring of 2018 with lymphoma survivors (n=17) and caregivers (n=2). Individual interviews allowed for an in-depth exploration of the themes garnered from the initial focus groups of lymphoma survivors and caregivers. Individual interview participants were recruited from regional patient education conferences and among current research participants at a university research hospital in the state of Georgia. Focus groups and interviews were recorded and transcribed verbatim. Thematic analysis was used to identify themes emerging from these data. MAXQDA 18.0.8 qualitative data analysis software was utilized to facilitate a constant-comparative coding process to identify the resulting themes. Results: Most focus group participants were frustrated by a lack of information received regarding diagnoses, treatment options, survivorship-related care, and research opportunities. Survivors and caregivers commonly felt disconnected from their clinical care team due to lack of communication, although some described trusting relationships. In particular, caregivers described their needs as being completely unaddressed in the care process. Participants expressed great interest in research, but were frustrated by the difficulty of finding research studies and results relevant to them. In Phase II, individual interviewees described their own unmet emotional needs and those of their caregivers. Several participants described their desire for more holistic and survivorship-oriented research, including studies to generate guidance for quality of life of cancer patients and survivors, alternative and non-traditional medicine, diet, and emotional or mental health. Emotionally, participants described how debilitating the fear of the unknown can be and the coping strategies they employed to combat this, including reliance on support systems, practicing gratefulness, and fostering trusting relationships with their clinical care teams. Interestingly, participants also experienced benefits from their cancer experiences, most notably strengthened relationships with their loved ones and increased spirituality or mindfulness. Conclusion: Results gleaned from focus groups and individual interviews provided insight into the unmet emotional and supportive needs of this population. Lymphoma survivors and their caregivers expressed their frustrations with their cancer experiences. These findings identified unmet patient-oriented research needs including research regarding quality of life after cancer treatment, messaging and communication between the scientific community and cancer patients, and emotional well-being. Health care professionals and investigators can utilize these data to provide meaningful information regarding care delivery, supportive services, and lymphoma research that meets the needs of lymphoma survivors and caregivers. Disclosures Flowers: Bayer: Consultancy; Denovo Biopharma: Consultancy; Gilead: Research Funding; Millennium/Takeda: Research Funding; Abbvie: Consultancy, Research Funding; Gilead: Consultancy; Janssen Pharmaceutical: Research Funding; Abbvie: Research Funding; Pharmacyclics/ Janssen: Consultancy; Pharmacyclics: Research Funding; OptumRx: Consultancy; Karyopharm: Consultancy; Genentech/Roche: Consultancy; TG Therapeutics: Research Funding; Acerta: Research Funding; Spectrum: Consultancy; BeiGene: Research Funding; Genentech/Roche: Research Funding; Celgene: Research Funding; Burroughs Wellcome Fund: Research Funding; Eastern Cooperative Oncology Group: Research Funding; National Cancer Institute: Research Funding; V Foundation: Research Funding.
Across lymphoma subtypes, African Americans experience disparities in clinical trial enrollment and outcomes. Understanding the needs of this population can aid addressing these disparities. Semi-structured interviews were conducted with 14 self-identified Black/African-American lymphoma patients to determine their perceptions and attitudes about aspects of treatment and research. Constant-comparative methods identified themes including trust in medical staff, lack of diagnosis information, interest in research, research priorities, and potentially unaddressed emotional needs. Patients trusted their doctors and desired more diagnosis information. Participants often did not consider the emotions surrounding their diagnoses and concentrated on positive attitudes during treatment. Most participants were interested in clinical trials to help future lymphoma patients. Participants suggested a range of future research topics emphasizing lymphoma etiology. Building on trusting doctor-patient relationships, expanding clinical trials information, addressing emotional needs, and aligning research objectives with patient concerns are potential strategies for increasing clinical trial enrollment among Black lymphoma patients.
Background: Across lymphoma subtypes, disparities have been uncovered in age of onset, stage, treatment, and outcomes by socioeconomic status, insurance status, and race. For several lymphoma subtypes, Black patients present at a mean age approximately 10 years younger than White patients and have worse survival. Racial disparities in access to care and clinical trial enrollment have been described across cancers and contribute to these differences in survival. We sought to clarify patients' perceptions of the needs and priorities for care during diagnosis, treatment, and survivorship. Objective: We conducted qualitative research with Black lymphoma patients in order to determine their perceptions and understanding regarding treatment and research, barriers to care, and future research priorities. Methods: Semi-structured phone interviews were conducted with 12 Black patients with lymphoma who had received treatment in Georgia. Participants were recruited from patients who were previously agreed to be contacted about research when identified through the state cancer registry and a current research participant pool at a university research hospital in Atlanta, Georgia. Interviews were recorded and transcribed verbatim. MAXQDA software (version 18.0.8) was used for coding and identifying themes and grounded theory processes were used to generate codes. Thematic analysis will be used to generate further themes and create a constant-comparative coding process. Results: Emerging themes from this ongoing data collection include endurance, lack of information surrounding diagnosis, trust in medical staff, and willingness to participate in research. Several participants described their cancer journey as simply another hurdle to overcome. They did not consider the emotional toll of their diagnosis and instead focused on positivity, refusing to feel sorry for themselves. A lack of information during the process of care was the most significant barrier for patients. The majority of patients felt that they were not given enough information regarding their diagnosis, with some stating that they had never heard of lymphoma before they were diagnosed with it. Others felt that this lack of information continued into their treatment with some patients being unaware of their cancer status or not being informed about procedures before they occurred. This gap in information left participants feeling disconnected from their own treatment process and uninvolved in their care. Despite this, patients expressed great trust in medical staff. Nearly all participants stated that they trusted their doctor most in their clinical care team and were therefore more willing to proceed with treatments and procedures at their doctor's recommendation. Those with a weaker connection to their doctor and care team reported feeling less satisfied with their care experience. Patients were also very willing to participate in research. Most expressed interest to participate in order to help others that may be diagnosed in the future. Some stated specific factors that would deter them from enrolling in a study, with one participant referencing the Tuskegee Syphilis Study as her reason for avoiding drug trials. Participants expressed interest in a wide range of topics for future research, with several focused on the origins of lymphoma. These participants assumed that they may have been exposed to hazardous materials while serving in the military or through an environmental contaminant and wanted more knowledge in this area. Conclusions: These preliminary findings suggest that the Black population in Georgia has specific needs that are unaddressed by current scientific and medical communities. A lack of information leaves patients feeling uninvolved with their care and potentially disconnected from their care team. This study presents the opportunity for clinicians and research personnel to collaborate with patients to develop communication tools and strategies that keep this population informed during their treatment. Clinicians and medical providers can utilize these data to improve support for this population. Disclosures Flowers: TG Therapeutics: Research Funding; Karyopharm: Consultancy; Gilead: Consultancy, Research Funding; National Cancer Institute: Research Funding; BeiGene: Consultancy, Research Funding; Celgene: Consultancy, Research Funding; Denovo Biopharma: Consultancy; Genentech, Inc./F. Hoffmann-La Roche Ltd: Consultancy, Research Funding; Spectrum: Consultancy; Pharmacyclics/Janssen: Consultancy, Research Funding; AbbVie: Consultancy, Research Funding; Acerta: Research Funding; Bayer: Consultancy; V Foundation: Research Funding; AstraZeneca: Consultancy; Millenium/Takeda: Research Funding; Optimum Rx: Consultancy; Eastern Cooperative Oncology Group: Research Funding; Burroughs Wellcome Fund: Research Funding.
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