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PURPOSE: Patients with head and neck cancer (HNC) experience significant symptom burden from combination chemotherapy and radiation (chemoradiation) that affects acute and long-term health-related quality of life (HRQOL). However, psychosocial impacts of HNC symptom burden are not well understood. This study examined psychosocial consequences of treatment-related symptom burden from the perspectives of survivors of HNC and HNC healthcare providers. METHODS: This was a cross-sectional, mixed-method study conducted at an NCI-designated comprehensive cancer center. Participants (N = 33) were survivors of HNC who completed a full course of chemoradiation (n = 20) and HNC healthcare providers (n = 13). Participants completed electronic surveys and semi-structured interviews. RESULTS: Survivors were M = 61 years old (SD = 9) and predominantly male (75%), White (90%), non-Hispanic (100%), and diagnosed with oropharynx cancer (70%). Providers were mostly female (62%), White (46%) or Asian (31%), and non-Hispanic (85%) and included physicians, registered nurses, an advanced practice nurse practitioner, a registered dietician, and a speech-language pathologist. Three qualitative themes emerged: (1) shock, shame, and self-consciousness, (2) diminished relationship satisfaction, and (3) lack of confidence at work. A subset of survivors (20%) reported clinically low social wellbeing, and more than one-third of survivors (35%) reported clinically significant fatigue, depression, anxiety, and cognitive dysfunction. CONCLUSION: Survivors of HNC and HNC providers described how treatment-related symptom burden impacts psychosocial identity processes related to body image, patient-caregiver relationships, and professional work. Results can inform the development of supportive interventions to assist survivors and caregivers with navigating the psychosocial challenges of HNC treatment and survivorship.
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Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Estudos Transversais , Carga de Sintomas , Neoplasias de Cabeça e Pescoço/terapia , Sobreviventes/psicologiaRESUMO
PURPOSE: Little is known about late and long-term patient-reported outcomes (PROs) of immune checkpoint modulators (ICMs) outside clinical trials. We conducted a cross-sectional, mixed-methods study to describe long-term PROs among advanced melanoma patients who began standard of care treatment with ICMs at least 1 year previously. METHODS: All participants completed the Functional Assessment of Cancer Therapy-Immune Checkpoint Modulator (FACT-ICM), assessing 46 immune-related side effects on a 5-point Likert scale, and a subset completed individual interviews. Descriptive statistics were computed for quantitative data and applied thematic analysis was used to examine qualitative data. RESULTS: Participants (N = 80) had a mean age of 67 years, and the majority were male (66%), non-Hispanic White (96%), and college graduates (61%). Single-agent nivolumab was the most common first (47%) and current/recent ICM (64%). On the FACT-ICM, 98% of participants reported at least one side effect, and 78% reported moderate or severe side effects. The most common moderate or severe side effects were aching joints (43%) and fatigue (38%). In interviews (n = 20), we identified five themes regarding patients' longer-term experiences after ICMs: lasting fatigue or decline in functioning, minimal side effects, manageable thyroid and pituitary dysfunction, skin conditions can be difficult to manage, and treating the cancer is worth the side effects. CONCLUSIONS: Nearly all patients reported side effects of ICMs at least 1 year after starting treatment. Our findings suggest that ICM side effect screening and management-especially for aching joints and fatigue-are indicated during long-term care of people living with advanced melanoma.
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Inibidores de Checkpoint Imunológico , Melanoma , Medidas de Resultados Relatados pelo Paciente , Humanos , Melanoma/tratamento farmacológico , Masculino , Feminino , Idoso , Inibidores de Checkpoint Imunológico/efeitos adversos , Inibidores de Checkpoint Imunológico/uso terapêutico , Estudos Transversais , Pessoa de Meia-Idade , Recidiva Local de Neoplasia , Adulto , Idoso de 80 Anos ou mais , Neoplasias Cutâneas/tratamento farmacológico , Qualidade de VidaRESUMO
OBJECTIVE: This study aimed to describe considerations for developing supportive care interventions targeted to head and neck cancer (HNC) survivors. METHODS: One-time semi-structured interviews (N = 33) were conducted with HNC survivors who had recently finished treatment (n = 20) and HNC providers (e.g., physicians, nurses; n = 13). Interviews were transcribed verbatim and coded using inductive applied thematic analysis techniques to identify themes. RESULTS: HNC survivors (75% male; M = 61 years old) and providers (54% physicians; 62% female) were unanimously supportive of developing HNC-specific supportive care interventions. Participants described potential benefits of offering interventions at various points throughout the HNC treatment and survivorship trajectory rather than at a single critical time. Many participants preferred group-based interventions because of the high value of peer-support. Others described how group interventions may not be appropriate for all HNC survivors due to risks for negative social comparisons and exacerbated anxiety. Participants suggested topics that should be addressed in HNC-specific interventions including education about acute and long-term side effects, symptom management, nutritional support, relationship/social role changes, grief/loss, and fear of recurrence. CONCLUSIONS: HNC-specific supportive care interventions are critically needed, as survivors experience persistent symptoms and distinct psychosocial concerns that impact quality of life. Findings from this study can inform the development of supportive care interventions targeted to the unique psychosocial concerns of HNC survivors.
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Sobreviventes de Câncer , Neoplasias de Cabeça e Pescoço , Sobreviventes de Câncer/psicologia , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Sobreviventes , SobrevivênciaRESUMO
BACKGROUND: Sleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue. PURPOSE: This study aimed to understand the multifaceted experiences of sleep disturbance among BBCS and how to culturally target a mobile health (mHealth) intervention to improve sleep outcomes in BBCS. METHODS: Semi-structured interviews were conducted in a purposive sample of 10 BBCS. Interviews were audio-recorded, transcribed, and coded for key barriers to sleep and potential solutions to incorporate into behavioral interventions using NVivo 12. Inductive applied thematic analysis techniques were employed to identify emergent themes. RESULTS: Ten BBCS (mean age = 54, SD = 10) described their experiences of sleep disturbance with themes including: (1) barriers to quality sleep (e.g., cancer worry, personal responsibilities), (2) psychosocial impacts of sleep disturbance (e.g., fatigue, distress), and (3) commonly used strategies to improve sleep. The second section discusses suggestions for developing mHealth interventions to improve sleep for BBCS including: (1) feedback on an existing mHealth intervention and (2) intervention topics suggested by BBCS. CONCLUSIONS: Our findings highlight the challenges associated with sleep disturbance in BBCS. Participants report culturally targeted mHealth interventions are needed for BBCS who experience chronic sleep disturbance that affects their overall quality of life. These interventions should address coping with sleep-related issues relevant to many breast cancer survivors and BBCS (e.g., sexual intimacy, fear of cancer recurrence) and should incorporate intervention strategies acceptable to BBCS (e.g., prayer, meditation).
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Neoplasias da Mama , Sobreviventes de Câncer , Meditação , Transtornos do Sono-Vigília , Humanos , Pessoa de Meia-Idade , Feminino , Sobreviventes de Câncer/psicologia , Neoplasias da Mama/complicações , Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Recidiva Local de Neoplasia , Transtornos do Sono-Vigília/terapia , Transtornos do Sono-Vigília/complicações , SonoRESUMO
PURPOSE: The COVID-19 pandemic has drastically changed cancer care delivery strategies. Patients with locally advanced head and neck cancer (LA-HNC) may be particularly affected by the COVID-19 pandemic, as they often undergo treatments that require daily clinic visits (e.g., radiation therapy). The goal of this study was to characterize the lived experience of LA-HNC patients and their healthcare providers during the COVID-19 pandemic. METHODS: LA-HNC patients who completed a full course of chemotherapy and radiation therapy during the COVID19 pandemic (N = 20) and LA-HNC healthcare providers (N = 13) participated in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed for qualitative themes. RESULTS: The COVID-19 pandemic had a significant impact on patients' overall quality of life and health care. Results were organized in four main themes: (1) increased psychological distress; (2) exacerbated social isolation; (3) added stress in clinic for patients and providers; and (4) delays in health care. CONCLUSIONS: Findings highlight myriad ways LA-HNC patients and providers have been affected by the COVID-19 pandemic. Results can inform the development of supportive interventions to assist LA-HNC in managing COVID-19-related stress and unmet needs related to social isolation and in-clinic support.
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COVID-19 , Neoplasias de Cabeça e Pescoço , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Pandemias , Pesquisa Qualitativa , Qualidade de Vida/psicologiaRESUMO
PURPOSE: This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). METHODS: TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). RESULTS: Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. CONCLUSION: TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. TRIAL REGISTRATION: NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.
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Sobreviventes de Câncer , Neoplasias , Telemedicina , Humanos , Adulto Jovem , Qualidade de Vida , Intervenção Psicossocial , Estudos de Viabilidade , Neoplasias/terapiaRESUMO
Type 1 diabetes (T1D) is a chronic, complex medical condition associated with higher rates of anxiety in adolescents. Higher rates of anxiety are associated with poorer glycemic control. Although technological advancements have been made to improve self-management of glycemia, few technological interventions aim to mitigate anxiety symptoms. Adolescents frequently use technology every day for school and socialization in addition to management of glycemia. Technology has not yet been leveraged to provide evidence-based interventions, such as mindfulness, for anxiety symptoms and other psychosocial comorbidity in adolescents with T1D. We aimed to examine technology preferences in adolescents with type 1 diabetes, their experiences with mindfulness practices, and their perceived acceptability of a mobile health application delivering mindfulness training. Twenty participants aged 14 to 17 years old with T1D participated in this qualitative descriptive study. Interview transcripts were organized using the ATLAS.ti software version 8 and coded using an in vivo approach and thematic analysis. Descriptive statistics regarding participant demographics and hemoglobin A1c levels were analyzed using SAS statistical software version 9.2. Findings supported heavy technology use, limited experience with mindfulness, and positive receptivity regarding an app that delivered a mindfulness training program specifically for adolescents with T1D. Thus, a mobile health application may be a feasible and acceptable way to deliver an evidence-based psychosocial intervention to this vulnerable population.
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Diabetes Mellitus Tipo 1 , Atenção Plena , Pesquisa Qualitativa , Humanos , Adolescente , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/complicações , Atenção Plena/métodos , Feminino , Masculino , Aplicativos Móveis/normas , Aplicativos Móveis/estatística & dados numéricos , Aplicativos Móveis/tendênciasRESUMO
OBJECTIVE: This study explored patients and providers' perspectives on therapeutic vaccines for cervical cancer and assessed barriers and facilitators. METHODS: Qualitative semi-structured in-depth interviews were conducted with patients who had cervical dysplasia, or a past or current cervical cancer diagnosis and providers who provided care to patients with cervical abnormalities or cervical cancer. Data were analyzed using thematic analysis in NVivo. RESULTS: A total of 28 in-depth interviews were conducted with patients (N = 15) and providers (N = 13). Participants in both groups expressed enthusiasm for the prospect of a therapeutic vaccine for cervical cancer and were encouraged by less invasive treatment opportunities. Perceived patient barriers included concerns about side effects, eligibility criteria, costs, transportation, and logistical obstacles. Providers echoed these concerns, highlighted additional structural barriers such as racism and limited availability of culturally sensitive educational aids, and underscored the need for provider training on this topic. CONCLUSION: Our results reinforce the need for future multi-level interventions discussing vaccine efficacy, durability, and safety, as well as addressing factors such as awareness, knowledge, and beliefs. PRACTICE IMPLICATIONS: Our findings can contribute to the development of provider and patient-centered tools that promote therapeutic vaccine acceptance.
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Conhecimentos, Atitudes e Prática em Saúde , Entrevistas como Assunto , Pesquisa Qualitativa , Neoplasias do Colo do Útero , Humanos , Neoplasias do Colo do Útero/terapia , Feminino , Adulto , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Vacinas contra Papillomavirus/administração & dosagem , Vacinas contra Papillomavirus/uso terapêutico , Percepção , Atitude do Pessoal de Saúde , Pessoal de Saúde/psicologia , Vacinas Anticâncer/uso terapêutico , Infecções por Papillomavirus/prevenção & controle , IdosoRESUMO
OBJECTIVE: To develop theory-informed human papillomavirus (HPV) vaccine education materials that appeal to 18-26-year-olds. METHODS: First, draft materials informed by Theory of Planned Behavior (TPB) and Health Belief Model (HBM) were developed. Next, an initial set of Consolidated Framework for Implementation Research (CFIR)-guided interviews were conducted with 18-26-year-old participants to receive feedback about content, format, appeal, implementation facilitators and barriers, and potential delivery modalities. Then, interviews were transcribed, coded, and analyzed using thematic analysis. Next, materials were modified based upon feedback. Finally, another set of interviews was conducted. RESULTS: Most participants (n = 15) were female (93%), White (60%), and non-Hispanic (93%). All (100%) had heard of HPV and the HPV vaccine, and 80% reported having received the vaccine. Participant feedback on materials included emphasizing vaccine benefits and efficacy, rewording to enhance comprehension, and adding images represent diversity beyond race/ethnicity and sexual orientation. Suggested delivery methods included social media, print materials, and posters. CONCLUSION: Qualitative interviews with young adults suggest that HPV education materials targeted to 18-26-year-olds should include health behavior theory-aligned messaging, inclusive imagery, and be disseminated through multiple modalities. PRACTICE IMPLICATIONS: Providers should consider utilizing theory-based education materials that are relevant and appealing to young adults.
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Infecções por Papillomavirus , Vacinas contra Papillomavirus , Humanos , Masculino , Feminino , Adulto Jovem , Adolescente , Adulto , Infecções por Papillomavirus/prevenção & controle , Comportamentos Relacionados com a Saúde , Vacinação , Papillomavirus Humano , Conhecimentos, Atitudes e Prática em Saúde , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
PURPOSE: Adherence to oral endocrine therapy (ET) remains an issue for up to half of women prescribed these medications. There is emerging data that Black breast cancer survivors (BCS) have lower rates of ET adherence. Given the disparities in breast cancer recurrence and survival for Black BCS compared to their White counterparts, the goal of this study is to better understand barriers to ET adherence among Black BCS from the patient and provider perspectives. METHODS: In this qualitative study, we conducted semi-structured interviews between October 29, 2021, and March 1, 2023. Interviews were recorded and transcribed, and coded data were organized into primary and secondary themes. Participants were recruited from a single academic cancer center. A convenience sample of 24 Black BCS and 9 medical oncology providers was included. Eligible BCS were 18 years or older, English-speaking, diagnosed with stage I-III hormone receptor-positive breast cancer, who had initiated ET. RESULTS: Mean age of the BCS was 55 years (interquartile range, IQR 17 years). About one-fourth had a high school diploma or less (26.1%) and 47% completed a college education or higher. Approximately one-third of participants had annual household incomes of $40,000 or less (30.4%) or more than $100,000 (30.4%). Forty-three percent of the patient participants had private insurance; 11% were insured through Medicaid or the federal healthcare exchange; 26.1% had Medicare; and 13% were uninsured. Of the 9 medical oncology providers interviewed, 2 were advanced practice providers, and 7 were medical oncologists. We found 3 major themes: (1) Black BCS often had concerns about ET before initiation; (2) after initiation, both BCS and providers reported side effects as the most impactful barrier to ET adherence; and (3) survivors experienced challenges with managing ET side effects. CONCLUSIONS: Our results suggest that multifaceted support interventions for managing ET-related symptoms may lead to improved adherence to ET among Black women and may reduce disparities in outcomes. IMPLICATIONS FOR CANCER SURVIVORS: Multifaceted support interventions for managing ET-related symptoms may lead to improved adherence to ET among Black breast cancer survivors.
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OBJECTIVES: To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers. SUBJECTS AND METHODS: Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone. RESULTS: Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up." CONCLUSIONS: High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care.
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Cuidados Paliativos na Terminalidade da Vida , Neoplasias da Bexiga Urinária , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidadores/psicologia , Inquéritos e Questionários , Neoplasias da Bexiga Urinária/terapiaRESUMO
PURPOSE: There has been limited study of the implementation of suicide risk screening for patients with head and neck cancer (HNC) as a part of routine care. To address this gap, this study assessed oncology providers' and professionals' perspectives about barriers and facilitators of implementing a suicide risk screening among patients with HNC. MATERIALS AND METHODS: All patients with HNC with an in-person visit completed a suicide risk screening on an electronic tablet. Patients reporting passive death wish were then screened for active suicidal ideation and referred for appropriate intervention. Interviews were conducted with 25 oncology providers and professionals who played a key role in implementation including nurses, medical assistants, patient access representatives, advanced practice providers, physicians, social workers, and informatics staff. The interview guide was based on the Consolidated Framework for Implementation Research. Interviews were transcribed and analyzed for themes. RESULTS: Participants identified multilevel implementation barriers, such as intervention level (eg, patient difficulty with using a tablet), process level (eg, limited nursing engagement), organizational level (eg, limited clinic Wi-Fi connectivity), and individual level (eg, low clinician self-efficacy for interpreting and acting upon patient-reported outcome scores). Participants noted facilitators, such as effective care coordination across nursing and social work staff and the opportunity for patients to be screened multiple times. Participants recommended strengthening patient and clinician education and providing patients with other modalities for data entry (eg, desktop computer in the waiting room). CONCLUSION: Participants identified important intervention modifications that may be needed to optimize suicide risk screening in cancer care settings.
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Neoplasias de Cabeça e Pescoço , Médicos , Suicídio , Humanos , Detecção Precoce de CâncerRESUMO
The field of radionuclide therapy (RNT) for prostate cancer (PC) is growing rapidly, with recent Food and Drug Administration approval of the first 177Lu-PSMA ligand. We aimed to develop the first patient-reported outcome (PRO) measure for PC patients receiving RNT. Methods: We identified relevant symptoms and toxicities by reviewing published trials and interviews with PC patients receiving RNT (n = 29), caregivers (n = 14), and clinicians (n = 11). Second, we selected items for measure inclusion. Third, we refined the item list with input from experts in RNTs and PROs. Fourth, we finalized the Functional Assessment of Cancer Therapy-Radionuclide Therapy (FACT-RNT) with patient input. Results: This multistep process yielded a brief 15-item measure deemed by key stakeholders to be relevant and useful in the context of RNT for PC. Conclusion: The FACT-RNT is a new standardized tool to monitor relevant symptoms and toxicities among PC patients in RNT trials and real-world settings.
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Neoplasias da Próstata , Masculino , Humanos , Neoplasias da Próstata/radioterapia , Neoplasias da Próstata/tratamento farmacológico , Radioisótopos/uso terapêutico , Medidas de Resultados Relatados pelo PacienteRESUMO
PURPOSE: The effects of COVID-19 have been understudied in rural areas. This study sought to (1) identify cancer screening barriers and facilitators during the pandemic in rural and urban primary care practices, (2) describe implementation strategies to support cancer screening, and (3) provide recommendations. METHODS: A qualitative study was conducted (N = 42) with primary care staff across 20 sites. Individual interviews were conducted through videoconference from August 2020 to April 2021 and recorded, transcribed, and analyzed using deductive and inductive coding (hybrid approach) in NVivo 12 Plus. Practices included federally qualified health centers, tribal health centers, rural health clinics, hospital/health system-owned clinics, and academic medical centers across 10 states including urban (55%) and rural (45%) sites. Staff included individuals serving in the dual role of health care provider and administrator (21.4%), health care administrator (23.8%), physician (19.0%), advanced practice provider (11.9%), or resident (23.8%). The interviews assessed perceptions about cancer screening barriers and facilitators, implementation strategies, and future recommendations. RESULTS: Participants reported multilevel barriers to cancer screening including policy-level (eg, elective procedure delays), organizational (eg, backlogs), and individual (eg, patient cancellation). Several facilitators to screening were noted, such as home-based testing, using telehealth, and strong partnerships with referral sites. Practices used strategies to encourage screening, such as incentivizing patients and providers and expanding outreach. Rural clinics reported challenges with backlogs, staffing, telehealth implementation, and patient outreach. CONCLUSION: Primary care staff used innovative strategies during the pandemic to promote cancer screening. Unresolved challenges (eg, backlogs and inability to implement telehealth) disproportionately affected rural clinics.