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This systematic review aimed to update the perceived needs of individuals with breast cancer (BC). Databases were searched for studies reporting quantitative data collected through validated assessment tools. Needs of adults with BC were reported by survivorship phase. The post-diagnosis and the post-surgery phases revealed the most needs; health system and information needs represented the greatest concern, with average Supportive Care Needs Survey-Short Form (SCNS-SF34) scores ranging from 62.0 to 75.8 post-diagnosis and from 45.0 to 67.8 post-surgery. Needs then seemed to decrease or remain stable up to within one year from diagnosis, when needs in all domains increased again; health system and information needs remained a priority. Younger age, side effects, type of treatment, and advanced stage were associated with the occurrence of unmet needs. The needs of BC survivors vary over the course of their cancer experience. This knowledge can assist the planning of appropriate assessments.
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Neoplasias da Mama , Sobreviventes de Câncer , Feminino , Humanos , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Sobreviventes de Câncer/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde , Avaliação das NecessidadesRESUMO
PURPOSE: This study addresses the critical issue of survivorship care for Black prostate cancer survivors. The aim was to explore their awareness of survivorship care plans to improve prostate cancer care and survivorship within this high-risk group. METHODS: Utilizing a thematic analysis approach, we conducted in-depth interviews focused on analyzing post-treatment experiences of Black prostate cancer survivors by applying interpretive explanations to data collected from participants. RESULTS: Participants reported a significant gap in survivorship care plan communication post-treatment, as these plans were seldom discussed. Survivors highlighted the adoption of post-treatment strategies and self-education as means to enhance their comprehension of the survivorship process. Black survivors demonstrated an intrinsic motivation, after feeling "discarded," to find suitable resources to enhance their survivorship care for a better quality of life. CONCLUSION: The prioritization of post-treatment care for Black prostate cancer survivors is important. By offering comprehensive post-treatment education, improving symptom transparency, and establishing safe spaces for open discussion, the quality of life of Black survivors may be substantially improved. IMPLICATIONS FOR CANCER SURVIVORS: There is a pressing need for dynamic post-treatment care coordination tailored to Black prostate cancer survivors. A lack of crucial post-treatment education for this population that experiences disproportionate burden of prostate cancer may exacerbate cancer health disparities. Addressing this care coordination gap may improve support systems, survivor well-being, and better cancer outcomes.
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BACKGROUND: Treatment summaries and a personalized survivorship care plans based on internationally approved, organ-specific follow-up care recommendations are essential in preserving the health and quality of life for cancer survivors. Cohorts made up of survivors of childhood cancer have made significant contributions to the understanding of early mortality, somatic late complications, and psychosocial outcomes among former patients. New treatment protocols are needed to enhance survival and reduce the potential risk and severity of late effects, and working with treatment databases is crucial in doing so. CONSTRUCTION AND CONTENT: In the GOCE (Grand Ouest Cancer de l'Enfant [Western Region Childhood Cancer]) network, in a participative approach, we developed the LOG-after medical tool, on which health data are registered and can be extracted for analysis. Its name emphasizes the tool's goal, referring to 'logiciel' (the French word for software) that focuses on the period "after" the acute phase. This tool is hosted on a certified health data server. Several interfaces have been developed that can be used depending on the user's profile. Here we present this innovative co-constructed tool that takes national aspects into account, including the results of the feasibility/satisfaction study and its perspective. UTILITY AND DISCUSSION: The database contains data relating to 2558 patients, with samples from 1702 of these (66.54%) being held in a tumor bank. The average year in which treatment started was 2015 (ranging from December 1967 to November 2022: 118 patients were treated before 2012 and registered retrospectively when seen in long-term follow-up consultations or for another cancer since November 2021). A short questionnaire was distributed to healthcare professionals using the tool (physicians and research associates or technicians, n = 14), of whom 11 answered and were all satisfied. Access to the patient interface is currently open to 124 former patients. This was initially offered to 30 former patients who were over 15 years old, affected by the disease within the last 5 years, and had agreed to test it. Their opinions were collected by their doctor by e-mail, telephone, or during a consultation in an open-ended question and a non-directive interview. All patients were satisfied with the tool, with interest in testing it in the long term. Some former patients found that the tool provided them with some ease of mind; one, for instance, commented: "I feel lighter. I allow myself to forget. I know I will get a notification when the time comes." CONCLUSIONS: Freely available to all users, LOG-after: (1) provides help with determining personalized survivorship care plans for follow-up; (2) builds links with general practitioners; (3) empowers the patient; and (4) enables health data to be exported for analysis. Database URL for presentation: https://youtu.be/2Ga64iausJE.
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Assistência ao Convalescente , Neoplasias , Criança , Humanos , Adolescente , Estudos de Viabilidade , Qualidade de Vida , Estudos Retrospectivos , Neoplasias/terapia , SoftwareRESUMO
PURPOSE: Survivorship care plans (SCP) are recommended as integral to survivorship care but are not routinely provided in many centers. We explore whether SCP from the Sydney Cancer Survivorship Centre (SCSC) clinic was received by general practitioners (GP) and cancer specialists, and their views on SCP. METHODS: A mixed-method study comprising a quality assurance audit, a questionnaire of GP practices and GP, and semi-structured interviews of cancer specialists who referred patients to the SCSC clinic between 2019-2020. Descriptive statistics were used for quantitative data and content analysis for qualitative data. RESULTS: The audit found 153/190 (80.5%) SCSC attendees had SCP uploaded to hospital medical records. The response rate from GP practices was 41%; among the 55 responding practices, 38 (69%) did not receive the SCP. The response rate from GP was 19%; among the 29 responding GP, 25 (86%) indicated the SCP was worthwhile, especially follow-up plans and multidisciplinary team recommendations. Analysis of 14 cancer specialist interviews identified themes of 1) awareness of SCP; 2) access: SCP difficult to locate; 3) process: access and distribution require improvement; 4) systemic issues; 5) content and layout: more concise and better readability required; 6) value: mainly for GP and survivors; 7) use of SCP: limited; 8) recommendations: improve delivery process, enhance layout/content, more stakeholder input, more tailored information. CONCLUSION: Although response rates from GP were low, those responding perceived SCP to be useful. Cancer specialists believed SCP were more valuable for GP and survivors. Process issues, especially SCP delivery, need to be improved.
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Clínicos Gerais , Neoplasias , Humanos , Sobrevivência , Planejamento de Assistência ao Paciente , Neoplasias/terapia , SobreviventesRESUMO
PURPOSE: Electronic health records (EHR) and data warehouses contain large amounts of data that hold promise for understanding and improving population health management. Utilizing the Health Data Compass (HDC) warehouse, a comprehensive and novel database of adult Coloradans who have completed curative-intent cancer treatment within a health care system was created. By analyzing patient demographics and health care utilization among this group, gaps in and barriers to coordinated care post-active cancer treatment may be identified and better understood. METHODS: A survivorship database (HDC-SD) was built from the Health Data Compass (HDC) warehouse by identifying individuals with histories of cancer who received treatment summary care plans (TSCPs) through the University of Colorado Cancer Center (UCCC) between January 1, 2020, and December 31, 2021. Patient sociodemographic characteristics, disease characteristics, and health maintenance were described and compared between urban and rural settings using chi-square tests. RESULTS: The HDC-SD includes 1933 records representing 13 categories of cancers. The majority live in an urban setting (89.8%). Patients in HDC-SD living in urban areas had higher rates of completing recommended colorectal screening, mammography, Prostate-Specific Antigen (PSA) tests, flu shots, and COVID-19 vaccination. Additionally, emergency department visits occurred at a statistically significant higher level for those living in urban areas. CONCLUSIONS: Creating and analyzing a comprehensive database of individuals who have completed active cancer treatment may highlight gaps in care within complex health care systems. Engaging different stakeholders to address these issues may help improve and enhance systematic population management for cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Completed treatment summary care plans may be used to increase the completion of individual health maintenance recommendations and potentially population health maintenance recommendations.
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PURPOSE: To describe and assess physical and psychosocial concerns and care processes related to cancer and treatment in gynecologic cancer survivors. PARTICIPANTS & SETTING: 44 survivors of gynecologic cancer at City of Hope National Medical Center in southern California were enrolled. METHODOLOGIC APPROACH: A descriptive mixed-methods approach was used. Data were collected on survivorship care plan implementation, supportive care referrals, and barriers to receiving care. Participants completed questionnaires assessing quality of life, unmet needs, and other outcomes at three, six, and nine months after enrollment. Changes over time were analyzed, and quantitative and qualitative results were compared. FINDINGS: The most common unmet needs were stress reduction, side effect management, fear of cancer recurrence (FCR), and perception of adequate communication among the care team. Qualitative themes centered around communication, care coordination, FCR, financial distress, and need for information about peer support and healthy lifestyles. IMPLICATIONS FOR NURSING: Nurses play a key role in coordinating care, assessing symptoms, and addressing psychosocial concerns. Providing education and coaching can reduce stress and facilitate survivors' self-management and self-efficacy.
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Sobreviventes de Câncer , Neoplasias dos Genitais Femininos , Feminino , Humanos , Sobrevivência , Qualidade de Vida , Neoplasias dos Genitais Femininos/terapia , SobreviventesRESUMO
BACKGROUND: Non-metastatic breast cancer treatment is mainly based on surgery, with or without chemotherapy, radiotherapy and/or hormone therapy. To reduce the risk of hormone receptor positive (HR+) disease recurrence, hormone therapy is prescribed for at least 5 years. It may induce adverse drug reactions (ADRs) as joint pain, sexual dysfunction, weight increase, fatigue, mood disorders and vasomotor symptoms. Around 30-40% of patients withhold hormone therapy within 5 years after initiation. Based on encouraging results of mobile health in patient follow-up, we developed a web-application addressed for breast cancer patients initiating adjuvant hormonal therapy and aimed to assess its impact on hormone therapy adherence, ADRs management, and health-related quality of life. METHODS: The WEBAPPAC trial is a randomized, open-label, prospective, single-center phase 3 study aiming to assess the interest of a web-application support as compared to standard management among breast cancer patients initiating hormone therapy. The main endpoint is the proportion of patients with hormone therapy adherence failure within 18 months after treatment start, in each arm. Eligible patients will be 1:1 randomized between the WEBAPPAC web-application support (experimental arm,) or standard support (control arm), with stratification on type of hormone therapy (Aromatase inhibitor or Tamoxifen). We plan to enroll 438 patients overall. Failure to hormone therapy will be assessed using the Morisky 8-item self-questionnaire (MMSA8), patient adherence logbook, and medical consultations. Secondary outcomes include hormone therapy adherence at 6 months, pain (Visual Analogue Scale and Brief Pain Inventory), quality of life (EORTC QLQ-C30 and BR23 self-questionnaires), anxiety and depression (Hospital and Depression Scale), and return to work and/or daily activities. The user experience with the WEBAPPAC web-application will be assessed using the System Usability Scale (SUS) questionnaire. DISCUSSION: Hormone therapy discontinuation or adherence failure in breast cancer patients may be indirectly related to an increased risk of recurrence. A better control of medication adherence, through the detection of side effects and some proposed actions trying to reduce them, appears therefore essential to limit the risk of disease recurrence. The WEBAPPAC web-application thus aims better monitoring and allowing higher level of responsiveness in case of ADRs, thus improving treatment adherence. TRIAL REGISTRATION: NCT04554927, registered September 18, 2020. PROTOCOL VERSION: Version 2.1 dated from December 21, 2021.
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Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/patologia , Qualidade de Vida , Estudos Prospectivos , Recidiva Local de Neoplasia , Adesão à Medicação , Adjuvantes Imunológicos/uso terapêutico , Hormônios/uso terapêutico , DorRESUMO
BACKGROUND: The impact of survivorship care plans (SCPs) on the proximal and distal outcomes of adult and childhood cancer survivors, and parent proxies, is unclear. This study aimed to determine the relationship between SCP receipt and these outcomes. METHODS: A cross-sectional survey of adult and childhood cancer survivors (and parent proxies for survivors aged younger than 16 years) across Australia and New Zealand was conducted. Multivariate regression models were fitted to measure the impact of SCP receipt on proximal (unmet information needs and propensity to engage with, and attend, cancer-related follow-up care) and distal outcomes (quality of life and satisfaction with cancer-related follow-up care) with control for cancer history and sociodemographic factors. RESULTS: Of 1123 respondents, 499 were adult cancer survivors and 624 were childhood cancer survivors (including 222 parent proxies). We found that SCP receipt was predictive of greater attendance at, and awareness of, cancer-related follow-up care (adult: odds ratio [OR], 2.46; 95% CI, 1.18-5.12; OR, 2.38; 95% CI, 1.07-5.29; child/parent: OR, 2.61; 95% CI, 1.63-4.17; OR, 1.63; 95% CI, 1.06-2.50; respectively). SCP receipt also predicted fewer unmet information needs related to "follow-up care required" and "possible late effects" (adult: OR, 0.44; 95% CI, 0.20-0.96; OR, 0.29; 95% CI, 0.13-0.64; child/parent: OR, 0.46; 95% CI, 0.30-0.72; OR, 0.57; 95% CI, 0.38-0.85; respectively). In terms of distal outcomes, SCP receipt predicted a better global quality of life for adult cancer survivors (ß, 0.08; 95% CI, -0.01-7.93), proxy-reported health-related quality of life (ß, 0.15; 95% CI, 0.44-7.12), and satisfaction with follow-up care for childhood cancer survivors (OR, 2.93; 95% CI, 1.64-5.23). CONCLUSIONS: Previous studies have shown little impact of SCPs on distal end points. Results suggest that SCPs may be beneficial to cancer survivors' proximal and distal outcomes.
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Assistência ao Convalescente , Neoplasias , Adulto , Criança , Humanos , Idoso , Sobrevivência , Qualidade de Vida , Estudos Transversais , Neoplasias/terapia , Satisfação Pessoal , Planejamento de Assistência ao PacienteRESUMO
PURPOSE: A cross sectional study of adolescent and young adult (AYA) head and neck (H&N) cancer survivors was performed to assess late effects. Survivorship care plans (SCPs) were generated and evaluated by participants and their primary care providers (PCPs). METHODS: AYA H&N survivors who had been discharged over 5 years prior from our institution were assessed in recall consultation by a radiation oncologist. Late effects were assessed and individualized SCPS were created for each participant. Participants completed a survey evaluating the SCP. PCPs were surveyed before the consultation and after evaluating the SCP. RESULTS: 31/36 participants (86%) completed the SCP evaluation. The SCP was considered to be a positive experience for 93% of participants. Most of the AYA participants indicated that the information provided in the SCP helped them understand the need for follow-up to assess late effects (90%). The pre-consultation PCP survey response rate was 13/27 (48%) and only 34% were comfortable in providing survivorship care for AYA H&N cancer patients. The PCP response rate to the survey that accompanied the SCP was 15/27 (55%) and the majority (93%) reported that the SCP would be helpful to care for other AYA and non-AYA cancer survivors in their practice. CONCLUSIONS: Our research suggested that AYA head and neck cancer survivors valued the SCPs as did their PCPs. IMPLICATIONS FOR CANCER SURVIVORS: The introduction of SCPs is likely to help improve survivorship and transitioning of care from the oncology clinic to PCP in this population.
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Neoplasias de Cabeça e Pescoço , Neoplasias , Humanos , Adolescente , Adulto Jovem , Sobrevivência , Estudos Transversais , Planejamento de Assistência ao Paciente , Sobreviventes , Neoplasias de Cabeça e Pescoço/terapia , Atenção Primária à SaúdeRESUMO
PURPOSE: To better understand preferences and attitudes that adult-aged survivors of childhood cancer have toward survivorship care plans (SCP) and related SCP-based counseling. METHODS: Semi-structured qualitative interviews were conducted with 20 survivors participating in the Childhood Cancer Survivor Study who were at increased risk for cardiovascular disease secondary to their original cancer treatment. All participants were part of a larger randomized clinical trial (NCT03104543) testing the efficacy of an SCP-based counseling intervention with goal-setting designed to improve control of cardiovascular risk factors (i.e., hypertension, dyslipidemia, diabetes). A primarily deductive thematic analysis methodology guided interpretation; coded interview segments were grouped into primary themes of facilitators, barriers, suggestions, and positive sentiments. RESULTS: Participants described benefits of the intervention including facilitation of accountability, goal-setting, and increased knowledge of their health. Many participants also noted improved knowledge of their cancer treatment and subsequent risks, and they were interested in sharing this information with their primary care provider. However, several participants were disappointed when they did not achieve their goals or felt that they had low motivation. Participants generally wanted increased flexibility in the intervention, whether in the duration, frequency, or method of delivery. CONCLUSIONS: The SCP-based intervention was generally well-received by those interviewed and appears promising for promoting goal-setting and accountability as part of an SCP-based intervention to improve control of cardiovascular risk factors. IMPLICATIONS FOR CANCER SURVIVORS: Many survivors are at risk for cardiovascular disease or other potentially modifiable effects of their treatment. SCP-based interventions may facilitate improved control of these late effects.
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OBJECTIVES: The present study aimed to evaluate the effects of a nurse-led survivorship care program (SCP) on emotional distress, social support, physical health, mental health, and resilience in primary caregivers of patients with advanced head and neck cancer. DATA SOURCES: A randomized controlled trial was conducted. One hundred patient-primary caregiver dyads were randomized into the nurse-led SCP group (experimental) or the usual care group (control). Participants completed a self-reported questionnaire, including measures of emotional distress, social support, physical health, mental health, and resilience. After 6 months, the experimental group reported a significant improvement in emotional distress, social support, physical health, mental health, and resilience. Compared with the control group, measures of emotional distress, physical health, overall resilience, and the resilience aspects of equanimity and perseverance improved in the experimental group. CONCLUSION: An SCP may feasibly help alleviate emotional distress, improve social support, increase physical and mental health, and strengthen resilience in the primary caregivers of patients with head and neck cancer. Health care providers should encourage primary caregivers to join an SCP. IMPLICATIONS FOR NURSING PRACTICE: The nurse-led SCP can be applied before patients complete treatment, which may increase the positive effect on physical health and adaptation.
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Neoplasias de Cabeça e Pescoço , Sobrevivência , Humanos , Cuidadores/psicologia , Papel do Profissional de Enfermagem , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: The increasing group of melanoma survivors reports multiple unmet needs regarding survivorship care (SSC). To optimise melanoma SSC, it is crucial to take into account the perspectives of oncological healthcare providers (HCPs) in addition to those of patients. The aim of this study is to gain an in-depth understanding of HCPs' perspectives on appropriate melanoma SSC. METHODS: Four online focus groups were conducted with mixed samples of oncological HCPs (dermatologists, surgeons, oncologists, oncological nurse practitioners, support counsellors and general practitioners) (total n = 23). A topic guide was used to structure the discussions, focusing on perspectives on both SSC and survivorship care plans (SCPs). All focus groups were recorded, transcribed verbatim, and subjected to an elaborate thematic content analysis. RESULTS: Regarding SSC, HCPs considered the current offer minimal and stressed the need for broader personalised SSC from diagnosis onwards. Although hardly anyone was familiar with SCPs, they perceived various potential benefits of SCPs, such as an increase in the patients' self-management and providing HCPs with an up-to-date overview of the patient's situation. Perceived preconditions for successful implementation included adequate personalisation, integration in the electronic health record and ensuring adequate funding to activate and provide timely updates. CONCLUSIONS: According to HCPs there is considerable room for improvement in terms of melanoma SSC. SCPs can assist in offering personalised and broader i.e., including psychosocial SSC. Aside from personalisation, efforts should be focused on SCPs' integration in clinical practice, and their long-term maintenance.
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Melanoma , Sobrevivência , Humanos , Grupos Focais , Planejamento de Assistência ao Paciente , Pessoal de Saúde , Melanoma/terapiaRESUMO
PURPOSE: We performed this study to characterize the population at the Lifespan Cancer Institute (LCI) who received a survivorship care plan (SCP) with or without a survivorship care visit (SCV) to determine both the impact on specialty referrals and the demographic and clinical predictors of SCPs and SCVs. METHODS: We retrospectively reviewed EMR records on 1960 patients at LCI between 2014 and 2017 for SCPs and SCVs and extracted demographics, distress thermometer (DT) scores collected at the time of initial presentation, and subsequent referrals. We evaluated the bivariate associations of SCP and SCV with continuous and categorical factors and assessed the adjusted effect of these factors on receipt of SCP and SCV independently. All analyses were performed in R v4.0.2. RESULTS: SCPs were completed in 740 (37.8%) patients, and of those, 65.9% had a SCV. The mean age was 63.9, 67% were female, and 51.2% were married or partnered. Patients treated for breast, lung, and prostate cancers most received an SCP. Compared to SCP alone, the SCV was associated with more specialty referrals. Those who were younger and had breast cancer were more likely to receive a SCP, and those who were younger and female and had breast cancer were more likely to receive a SCV. CONCLUSIONS: Gender, age, and type of cancer are significant predictors of receipt of SCP and SCV. Patients who received either SCP, SCV, or both were more likely to receive specialty referrals than those who received neither. IMPLICATIONS FOR CANCER SURVIVORS: Identifying predictive factors of SCP and SCV can help facilitate earlier receipt of specialty services and specialty referrals as needed.
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OBJECTIVES: Survivorship care is an essential component of quality cancer care. Although nurses are uniquely positioned to deliver effective and efficient nurse-led survivorship care, they report that their experiences of survivorship care provision are fragmented, under-resourced, and often distressing for the patient. DATA SOURCES: Here we report the culmination of a 4-year program of research and more than a decade of nurse-led work, to improve the survivorship care experience for men with prostate cancer comprising of: (1) the evolution of a national specialist prostate cancer nursing service; (2) a nursing Delphi study to determine prostate cancer survivorship care experiences and priorities; (3) the development of the Prostate Cancer Survivorship Essentials Framework, which provides a road map for improving quality prostate cancer survivorship care across a variety of settings; and (4) the translation of the framework into nursing practice through the development of My Personal Plan, a person-centered, evidence-informed survivorship care plan. CONCLUSION: Through the leadership of a national prostate cancer specialist nursing service, the provision of a coordinated, evidence-informed person-centered survivorship care service is now achievable. This program of work has demonstrated that irrespective of the setting or mode of delivery, specialist nurses involved in the care of men with prostate cancer and their families are leading best practice through the translation of evidence into everyday clinical practice. IMPLICATIONS FOR NURSING PRACTICE: There is an urgent need to address the significant challenges that a prostate cancer diagnosis can bring, and nurses are at the forefront and lead survivorship care delivery, which includes: (1) routine distress screening and referral to tailored evidence-based psychological care; (2) the provision of person-centered care that connects to effective symptom management; (3) self-management support; and (4) signposting to additional services which extend beyond the acute care setting.
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Enfermeiras e Enfermeiros , Neoplasias da Próstata , Masculino , Humanos , Sobrevivência , Papel do Profissional de Enfermagem/psicologia , Cuidados PaliativosRESUMO
BACKGROUND: The Children's Oncology Group Long-Term Follow-Up Guidelines provide exposure-based risks and recommendations for late effects screening of survivors of childhood cancer. Passport for Care (PFC) is a web-based clinical decision support tool for generating a personalized survivorship care plan (SCP) derived from the Guidelines and user-entered exposures. We assessed PFC clinician user practices and perceptions of PFC impact on clinic workflow, guidelines application, and survivor shared decision-making. PROCEDURE: A 35-item REDCap survey was emailed to all PFC users (n = 936) in 146 current and former PFC user clinics. Anonymous responses were permitted. Results were summarized and compared with a 2012 survey. RESULTS: Data were available from 148 respondents representing 64 out of 146 PFC user clinics (minimum clinic response rate 44%, excluding 49 anonymous responses). Generation of a personalized SCP was the most common application of PFC, followed by determination of surveillance recommendations and use as a survivor database. Twenty-five respondents (17%) felt data entry was a significant or insurmountable barrier to PFC application. Sixty-nine percent of respondents attributed PFC with a very high/high impact on guidelines adherence in their clinical practice, compared with 40% who attributed PFC with having a significant impact on adherence in 2012 (p < .001). CONCLUSION: The survey results provide valuable insights on patterns of SCP delivery and Survivor Clinic workflow. User-perceived benefits to PFC included facilitating clinician ability to follow guidelines recommendations in clinical practice. Importantly, some barriers to resource utilization were also identified, suggesting a need for user-informed adaptations to further improve uptake.
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Sistemas de Apoio a Decisões Clínicas , Neoplasias , Criança , Humanos , Sobrevivência , Sobreviventes , Neoplasias/terapia , InternetRESUMO
OBJECTIVE: To explore the feasibility and acceptability of Proyecto Mariposa, a culturally-tailored survivorship care program for rural Latina breast cancer patients. DESIGN: Single group mixed-method approach. METHODS: Feasibility of recruitment, intervention and evaluation, and perceptions about the intervention were assessed with 18 rural Latina breast cancer patients from the US/Mexico border region. Pre-post assessments evaluated change in patients' knowledge and concerns about survivorship care, and their self-efficacy about patient-physician interaction and managing chronic disease. FINDINGS: Feasibility was generally promising but affected by the COVID-19 outbreak. Participants found the intervention to be acceptable and useful, particularly with regard to information provision and encouraging proactive behavior. There was modest pre-post improvement on self-efficacy for managing disease. CONCLUSIONS: This pilot study suggested feasibility and acceptability of Proyecto Mariposa for rural Latina breast cancer patients. Change in outcomes was small indicating the need for research with a larger sample to establish reliable findings.
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Neoplasias da Mama , Feminino , Humanos , Neoplasias da Mama/etnologia , Neoplasias da Mama/terapia , Hispânico ou Latino , Projetos Piloto , Sobrevivência , Estudos de Viabilidade , Assistência à Saúde Culturalmente Competente , Planejamento de Assistência ao Paciente , Aceitação pelo Paciente de Cuidados de Saúde , População Rural , AutoeficáciaRESUMO
PURPOSE: The purpose of the study was to investigate the amount and type of survivorship care information received by cancer survivors living in rural Australia and whether this varies according to demographic factors or cancer type. METHODS: Self-reported receipt of a survivorship care plan (SCP) and information on various aspects of survivorship care (e.g., managing side effects, healthy lifestyles, psychosocial advice and monitoring for recurrence) were collected from 215 cancer survivors who had returned home to a rural area in Queensland Australia after receiving cancer treatment in a major city within the previous 5 years (72% in the previous 12 months). Logistic regression was used to assess for differences across demographic factors and cancer type. RESULTS: Only 35% of participants reported receiving a SCP and proportions of those reporting the receipt of specific information varied from 74% for information on short-term side effects to less than 30% for information on finances, chemoprevention and monitoring for signs of recurrence. No significant differences were found in the receipt of survivorship care information across demographic factors or cancer type. CONCLUSIONS: Findings suggest that cancer survivors living in rural areas are not consistently provided with adequate survivorship care information, particularly that pertaining to long-term health and recovery. IMPLICATIONS FOR CANCER SURVIVORS: Without improved systems for delivering survivorship care information to patients returning home to rural communities after treatment, these cancer survivors risk missing out on necessary information and advice to maintain their health, wellbeing and long-term recovery.
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Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Sobrevivência , População Rural , Neoplasias/terapia , Autorrelato , Planejamento de Assistência ao PacienteRESUMO
Pediatric, adolescent and young adult patients undergoing cancer treatment and/or hematopoietic stem cell transplant are at increased risk for developing a secondary human papillomavirus (HPV)-associated malignancy. The objective of this study was to determine HPV vaccination coverage among individuals participating in a childhood cancer survivor program (CCSP). A retrospective cohort study was conducted among CCSP patients age 11-26 years attending a CCSP visit between 2014 and 2019. Survivors were age-, sex-, and race-matched 1:2 with controls without cancer. Data were abstracted from the electronic health record and state-based vaccination registry. Analysis was limited to Minnesota residents to minimize missing vaccination data. Survivorship care plans (SCPs) were reviewed for vaccine recommendations. 592 patients were included in the analyses (200 CCSP patients; 392 controls). By study design, mean age (18.4 years), race (72 % white), and sex (49 % female) were similar in the two groups. Among CCSP patients 22 % resided in a rural area compared to 3.8 % of controls. Vaccination coverage among CCSP patients was not statistically significantly different from controls [60.0 % vs 66.3 %, OR = 0.82, 95 % CI: (0.55, 1.23), p = 0.35]. Completion of 3 doses was not different between groups even though 3 doses is recommended for all CCSP patients regardless of age at initiation (28.5 % vs 30.1 %, p = 0.09). Only 8.0 % of SCPs recommended HPV vaccination. Although patients participating in a CCSP did not have significantly different HPV vaccination coverage compared to controls, HPV vaccination initiation and 3-dose series completion are still suboptimal in a patient population at high-risk of a secondary HPV-associated cancer.
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PURPOSE OF REVIEW: Acute myeloid leukemia (AML) survivors face unique challenges affecting long-term outcomes and quality of life. There is scant literature on the long-term impact of AML treatment in physical and mental health, disease recurrence, and financial burden in survivors. RECENT FINDINGS: Fatigue, mental health concerns, infections, sexual dysfunction, and increase cancer recurrence occur after AML treatment. Chronic graft-versus-host disease (GVHD) and infections are common concerns in AML after hematopoietic stem cell transplantation (HCT). Survivorship guidelines encompass symptoms and complications but fail to provide an individualized care plan for AML survivors. Studies in patient-reported outcomes (PROs) and health-related quality of life (HRQoL) are sparse. Here we discuss the most common aspects pertaining to AML survivorship, late complications, care delivery, prevention of disease recurrence, and potential areas for implementation.
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Doença Enxerto-Hospedeiro , Transplante de Células-Tronco Hematopoéticas , Leucemia Mieloide Aguda , Adulto , Humanos , Condicionamento Pré-Transplante/efeitos adversos , Sobrevivência , Qualidade de Vida/psicologia , Leucemia Mieloide Aguda/terapia , Leucemia Mieloide Aguda/complicações , Doença Enxerto-Hospedeiro/etiologia , Doença Enxerto-Hospedeiro/prevenção & controle , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , RecidivaRESUMO
OBJECTIVES: To examine patient satisfaction and information recall after telehealth breast cancer survivorship visits with a nurse practitioner. SAMPLE & SETTING: Female survivors of breast cancer after their first visit with a nurse practitioner in the outpatient survivorship clinic post-treatment. METHODS & VARIABLES: Participants included female survivors who were originally diagnosed with stage 0-III breast cancer and have since completed an initial telehealth appointment to review the survivorship care plan. Survivors were invited to complete a 20-question electronic survey about their satisfaction and recall of visit information. RESULTS: 62 participants completed the survey and indicated an overall high level of satisfaction with telehealth survivorship appointments. Most recalled key survivorship information from the visit and felt the appropriate amount of information was discussed. Overall satisfaction was significantly correlated with the length and convenience of the appointment, and the personal manner and technical skills of the nurse practitioner. Survivors' age was not associated with significant differences in overall satisfaction. IMPLICATIONS FOR NURSING: Telehealth for initial survivorship visits demonstrated high satisfaction with telehealth and the overall visit as a low-cost intervention to treat symptoms.