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1.
Ann Fam Med ; 22(5): 369-374, 2024 Sep 23.
Article in English | MEDLINE | ID: mdl-39191462

ABSTRACT

BACKGROUND: For many patients with post-COVID-19 condition (long COVID), primary care is the first point of interaction with the health care system. In principle, primary care is well situated to manage long COVID. Beyond expressions of disempowerment, however, the patient's perspective regarding the quality of long COVID care is lacking. Therefore, this study aimed to analyze the expectations and experiences of primary care patients seeking treatment for long COVID. METHODS: A phenomenological approach guided this analysis. Using purposive sampling, we conducted semistructured interviews with English-speaking, adult primary care patients describing symptoms of long COVID. We deidentified and transcribed the recorded interviews. Transcripts were analyzed using inductive qualitative content analysis. RESULTS: This article reports results from 19 interviews (53% female, mean age = 54 years). Patients expected their primary care practitioners (PCPs) to be knowledgeable about long COVID, attentive to their individual condition, and to engage in collaborative processes for treatment. Patients described 2 areas of experiences. First, interactions with clinicians were perceived as positive when clinicians were honest and validating, and negative when patients felt dismissed or discouraged. Second, patients described challenges navigating the fragmented US health care system when coordinating care, treatment and testing, and payment. CONCLUSION: Primary care patients' experiences seeking care for long COVID are incongruent with their expectations. Patients must overcome barriers at each level of the health care system and are frustrated by the constant challenges. PCPs and other health care professionals might increase congruence with expectations and experiences through listening, validating, and advocating for patients with long COVID.Annals Early Access article.


Subject(s)
COVID-19 , Primary Health Care , Qualitative Research , Humans , Female , Male , Middle Aged , COVID-19/psychology , COVID-19/therapy , Adult , Aged , SARS-CoV-2 , Interviews as Topic , Post-Acute COVID-19 Syndrome , Physician-Patient Relations
2.
J Med Internet Res ; 25: e43877, 2023 08 31.
Article in English | MEDLINE | ID: mdl-37651162

ABSTRACT

BACKGROUND: When a genie is freed from its bottle, things cannot be restored to the way they were before. At the beginning of the global COVID-19 pandemic, health care systems adjusted how they delivered care overnight. Primary care practices switched from seeing patients in person to virtual care applications, including video and phone visits, e-visits, e-consults, and messaging with clinicians. Prior to the pandemic, these applications were not as widely used, but discussions around their advantages and disadvantages in some settings were being explored. Emergency regulatory changes spurred by the pandemic freed this virtual care "genie" from its bottle. Wide-scale adoption of virtual care in family medicine has much potential, as primary care services are often a patient's first point of contact with the health care system. OBJECTIVE: This study aims to analyze family medicine providers' experiences using virtual visits during the pandemic, perceived outcomes of the shift to virtual visits, and discusses its implications for the future of family medicine. METHODS: This qualitative study took place at 3 academic primary care clinics between June and December 2020. Data were collected through one-on-one Zoom (version 5.2.1) interviews with family medicine clinical faculty who experienced the rapid transition of in-person visits to mostly "virtual" visits. The interviews were recorded, deidentified, and transcribed. We adopted a constructivist approach to qualitative content analysis to evaluate the results. RESULTS: In total, 25 participants were eligible, and 20 individuals participated in this study (80% participation rate). The mean age was 43.4 years, and 85% (17/20) of the participants were female. We identified 3 main themes: the care process, patient engagement, and team-based care. CONCLUSIONS: This study highlights the transition from in-person to virtual visits during the pandemic from the perspective of family medicine providers. Generally, family medicine providers' perceptions of the shift to virtual visits were positive, especially regarding team-based care. Challenges involved virtual inhibition, particularly for providers. Providers described ways they integrated virtual care with aspects of in-person care, creating a hybrid environment. The genie is out of the bottle-things will not be the same-but family medicine now has the opportunity to evolve.


Subject(s)
COVID-19 , Humans , Female , Adult , Male , Family Practice , Pandemics , Qualitative Research
3.
J Med Internet Res ; 25: e42409, 2023 09 15.
Article in English | MEDLINE | ID: mdl-37713256

ABSTRACT

BACKGROUND: Managing hypertension in racial and ethnic minoritized groups (eg, African American/Black patients) in primary care is highly relevant. However, evidence on whether or how electronic health record (EHR)-driven approaches in primary care can help improve hypertension management for patients of racial and ethnic minoritized groups in the United States remains scarce. OBJECTIVE: This review aims to examine the role of the EHR in supporting interventions in primary care to strengthen the hypertension management of racial and ethnic minoritized groups in the United States. METHODS: A search strategy based on the PICO (Population, Intervention, Comparison, and Outcome) guidelines was utilized to query and identify peer-reviewed articles on the Web of Science and PubMed databases. The search strategy was based on terms related to racial and ethnic minoritized groups, hypertension, primary care, and EHR-driven interventions. Articles were excluded if the focus was not hypertension management in racial and ethnic minoritized groups or if there was no mention of health record data utilization. RESULTS: A total of 29 articles were included in this review. Regarding populations, Black/African American patients represented the largest population (26/29, 90%) followed by Hispanic/Latino (18/29, 62%), Asian American (7/29, 24%), and American Indian/Alaskan Native (2/29, 7%) patients. No study included patients who identified as Native Hawaiian/Pacific Islander. The EHR was used to identify patients (25/29, 86%), drive the intervention (21/29, 72%), and monitor results and outcomes (7/29, 59%). Most often, EHR-driven approaches were used for health coaching interventions, disease management programs, clinical decision support (CDS) systems, and best practice alerts (BPAs). Regarding outcomes, out of 8 EHR-driven health coaching interventions, only 3 (38%) reported significant results. In contrast, all the included studies related to CDS and BPA applications reported some significant results with respect to improving hypertension management. CONCLUSIONS: This review identified several use cases for the integration of the EHR in supporting primary care interventions to strengthen hypertension management in racial and ethnic minoritized patients in the United States. Some clinical-based interventions implementing CDS and BPA applications showed promising results. However, more research is needed on community-based interventions, particularly those focusing on patients who are Asian American, American Indian/Alaskan Native, and Native Hawaiian/Pacific Islander. The developed taxonomy comprising "identifying patients," "driving intervention," and "monitoring results" to classify EHR-driven approaches can be a helpful tool to facilitate this.


Subject(s)
Electronic Health Records , Hypertension , Minority Groups , Primary Health Care , Humans , Ethnicity , Hypertension/therapy , Racial Groups , United States
4.
Rural Remote Health ; 23(4): 8372, 2023 12.
Article in English | MEDLINE | ID: mdl-38049929

ABSTRACT

INTRODUCTION: The US is currently experiencing a maternal health crisis. Maternal morbidity and mortality in the US are higher than in other developed nations and continue to rise. Infant mortality, likewise, is higher in the US than in other developed nations. Limited availability of maternal health services, particularly in rural areas, contributes to this crisis. Maternal health outcomes are poorer, and maternal care workforce shortages are more severe in rural areas of the US. In rural areas where obstetric specialists are rare, many patients rely on family medicine physicians for maternity care. However, the number of family medicine physicians who provide maternal care services is decreasing, aggravating shortages. Calls have been made to build maternal care capacity in rural areas. The role family medicine will play in addressing the maternal health crisis is not clear. Maternal care shortages are complex issues resulting from multiple factors; likewise, efforts to build maternal health capacity are challenging and require multifaceted approaches. METHODS: With funding from the Health Resources and Services Administration (HRSA), the University of Utah seeks to address the shortage of quality maternity care in rural and underserved areas of Utah by strengthening partnerships, enhancing maternal care training of family medicine residents and obstetrics fellows, and improving the transition from training to rural practice for residents and fellows. This protocol describes the evaluation of the HRSA-funded project. The evaluation includes three components. Component 1 consists of qualitative interviews with a diverse group of maternal health providers, administrators, educators and academics, patients, and others. Interviews will be analyzed using qualitative content analysis. Component 2 is a survey of family medicine residents and obstetrics fellows, which aims to increase understanding of the factors and circumstances influencing intention to practice in rural or underserved areas and to provide maternal health services. Component 3 involves surveying fellowship alumni and tracking graduates to assess effectiveness of training programs in producing physicians who provide maternal health services in rural and underserved areas. Surveys will be analyzed with descriptive statistics including means, frequencies, and cross-tabulations. If sample size and participation provide sufficient power, statistical tests will be included in analyses. RESULTS: Evaluation results will help to fill an important gap in research literature concerning outcomes of projects and initiatives designed to build maternal care capacity in rural areas of the US. In addition, results will provide valuable information regarding effective practices for building capacity, which can be adopted elsewhere to address maternal care shortages. Finally, results will help to define the role of family medicine in addressing the maternal health crisis. Amid maternal care shortages, fewer and fewer family medicine physicians are providing maternal care in their practice. Evaluation results will clarify the role of training and preparation of family medicine residents in addressing workforce shortages. CONCLUSION: This evaluation will provide important contributions, but additional research is needed, including research protocols and studies of project outcomes, to understand how best to resolve the maternal care crisis in the US.


Subject(s)
General Practitioners , Maternal Health Services , Rural Health Services , Humans , Female , Pregnancy , Capacity Building , Maternal Health , Medically Underserved Area
5.
J Natl Compr Canc Netw ; 19(6): 709-718, 2021 03 10.
Article in English | MEDLINE | ID: mdl-34129522

ABSTRACT

BACKGROUND: This study aimed to understand the prevalence of prediabetes (preDM) and diabetes mellitus (DM) in patients with cancer overall and by tumor site, cancer treatment, and time point in the cancer continuum. METHODS: This cohort study was conducted at Huntsman Cancer Institute at the University of Utah. Patients with a first primary invasive cancer enrolled in the Total Cancer Care protocol between July 2016 and July 2018 were eligible. Prevalence of preDM and DM was based on ICD code, laboratory tests for hemoglobin A1c, fasting plasma glucose, nonfasting blood glucose, or insulin prescription. RESULTS: The final cohort comprised 3,512 patients with cancer, with a mean age of 57.8 years at cancer diagnosis. Of all patients, 49.1% (n=1,724) were female. At cancer diagnosis, the prevalence of preDM and DM was 6.0% (95% CI, 5.3%-6.8%) and 12.2% (95% CI, 11.2%-13.3%), respectively. One year after diagnosis the prevalence was 16.6% (95% CI, 15.4%-17.9%) and 25.0% (95% CI, 23.6%-26.4%), respectively. At the end of the observation period, the prevalence of preDM and DM was 21.2% (95% CI, 19.9%-22.6%) and 32.6% (95% CI, 31.1%-34.2%), respectively. Patients with myeloma (39.2%; 95% CI, 32.6%-46.2%) had the highest prevalence of preDM, and those with pancreatic cancer had the highest prevalence of DM (65.1%; 95% CI, 57.0%-72.3%). Patients who underwent chemotherapy, radiotherapy, or immunotherapy had a higher prevalence of preDM and DM compared with those who did not undergo these therapies. CONCLUSIONS: Every second patient with cancer experiences preDM or DM. It is essential to foster interprofessional collaboration and to develop evidence-based practice guidelines. A better understanding of the impact of cancer treatment on the development of preDM and DM remains critical.


Subject(s)
Diabetes Mellitus , Neoplasms , Prediabetic State , Cohort Studies , Diabetes Mellitus/epidemiology , Diabetes Mellitus/therapy , Female , Humans , Middle Aged , Neoplasms/diagnosis , Neoplasms/epidemiology , Neoplasms/therapy , Prediabetic State/diagnosis , Prediabetic State/epidemiology , Prediabetic State/therapy , Prevalence
6.
Fam Pract ; 38(4): 468-472, 2021 07 28.
Article in English | MEDLINE | ID: mdl-33684209

ABSTRACT

PURPOSE: Team-based care offers potential improvements in communication, care coordination, efficiency, value and satisfaction levels of both patients and providers. However, the question of how to balance the need for information in team-based care without disregarding patient preferences remains unanswered. This study aims to determine patients' perceptions of information sharing via electronic health records (EHRs) in team-based care. METHODS: This qualitative study used a focus group approach. Participants were primary care patients and representative members from minority groups (ethnic, racial or social). Audio recordings of the sessions were transcribed and coded consistent with thematic analyses. RESULTS: The analysis revealed that the participants in the focus groups had diverging levels of understanding and personal beliefs around five major themes including (i) patient's understanding of the care team, (ii) perceptions of electronic health records, (iii) defining basic health care information, (iv) sharing information with the health care team and (v) patient's trust in doctors and the health care system. CONCLUSIONS: The participants of our focus groups value team-based care and view patients as a critical part of those teams. With respect to electronic health records, our participants recognized their importance but had concerns about inaccuracies and limited options to correct errors in their records. In general, participants were willing to share basic information but disagreed about what information should be considered to be basic. Moreover, based on their trust and comfort level, many participants want to control what information is recorded and shared in the electronic health record.


Subject(s)
Electronic Health Records , Information Dissemination , Communication , Humans , Patient Care Team , Qualitative Research
7.
BMC Health Serv Res ; 21(1): 510, 2021 May 27.
Article in English | MEDLINE | ID: mdl-34039315

ABSTRACT

BACKGROUND: Stakeholders in the German state of Baden-Wuerttemberg agreed upon the central aims for healthcare planning. These include a focus on geographical districts; a comprehensive, cross-sectoral perspective on healthcare needs and services; and use of regional data for healthcare planning. Therefore, healthcare data at district level is needed. Nevertheless, decision makers face the challenge to make a selection from numerous indicators and frameworks, which all have limitations or do not well apply to the targeted setting. The aim of this study was to identify district level indicators to be used in Baden-Wuerttemberg for the purpose of cross-sectoral and needs-based healthcare planning involving stakeholders of the health system. METHODS: A conceptual framework for indicators was developed. A structured search for indicators identified 374 potential indicators in indicator sets of German and international institutions and agencies (n = 211), clinical practice guidelines (n = 50), data bases (n = 35), indicator databases (n = 25), published literature (n = 35), and other sources (n = 18). These indicators were categorised according to the developed framework dimensions. In an online survey, institutions of various stakeholders were invited to assess the relevance of these indicators from December 2016 until January 2017. Indicators were selected in terms of a median value of the assessed relevance. RESULTS: 22 institutions selected 212 indicators for the five dimensions non-medical determinants of health (20 indicators), health status (25), utilisation of the health system (34), health system performance (87), and healthcare provision (46). CONCLUSIONS: Stakeholders assessed a large number of indicators as relevant for use in healthcare planning on district level. TRIAL REGISTRATION: Not applicable.


Subject(s)
Delivery of Health Care , Health Care Sector , Germany , Humans , Surveys and Questionnaires
8.
Gynecol Oncol ; 156(1): 185-193, 2020 01.
Article in English | MEDLINE | ID: mdl-31839336

ABSTRACT

OBJECTIVE: The majority of endometrial cancer patients are overweight or obese at cancer diagnosis. Obesity is a shared risk factor for both endometrial cancer and diabetes, but it is unknown whether endometrial cancer patients have increased diabetes risks. The aim of our study was to investigate diabetes risk among endometrial cancer patients. METHODS: Endometrial cancer patients diagnosed between 1997 and 2012 in Utah (n = 2,314) were identified. Women from the general population (n = 8,583) were matched to the cancer patients on birth year and birth state. Diabetes diagnoses were identified from electronic medical records and statewide healthcare facility databases. Cox proportional hazards models were used to estimate hazard ratios for diabetes after cancer diagnosis. RESULTS: Endometrial cancer survivors had a significantly higher risk of type II diabetes when compared to women from the general population in the first year after cancer diagnosis (HR = 5.22, 95% CI = 4.05, 6.71), >1-5 years after cancer diagnosis (HR = 1.67, 95% CI = 1.31, 2.12), and >5 years after cancer diagnosis (HR = 1.65, 95% CI = 1.29, 2.11). Endometrial cancer patients who were obese at cancer diagnosis had a three-fold increase in type II diabetes risk (HR = 2.99, 95%CI = 2.59, 3.45). Although endometrial cancer patients diagnosed at distant stage had a higher risk of diabetes, cancer treatment did not appear to contribute to any diabetes risks. CONCLUSIONS: In conclusion, endometrial cancer survivors had a higher risk of diabetes than women in the general population. These results suggest that long term monitoring for diabetes is indicated for endometrial cancer survivors.


Subject(s)
Cancer Survivors/statistics & numerical data , Diabetes Mellitus, Type 2/epidemiology , Endometrial Neoplasms/epidemiology , Aged , Aged, 80 and over , Cohort Studies , Endometrial Neoplasms/mortality , Female , Humans , Middle Aged , Risk , SEER Program , United States/epidemiology
9.
J Med Internet Res ; 22(1): e15102, 2020 01 29.
Article in English | MEDLINE | ID: mdl-32012060

ABSTRACT

BACKGROUND: The implementation of a personal electronic health record (PHR) is a central objective of digitalization policies in the German health care system. Corresponding legislation was passed with the 2015 Act for Secure Digital Communication and Applications in the Health Sector (eHealth Act). However, compared with other European countries, Germany still lags behind concerning the implementation of a PHR. OBJECTIVE: In order to explore potential barriers and facilitators for the adoption of a PHR in routine health care in Germany, this paper aims to identify policies, structures, and practices of the German health care system that influence the uptake and use of a PHR. METHODS: A total of 33 semistructured interviews were conducted with a purposive sample of experts: 23 interviews with different health care professionals and 10 interviews with key actors of the German health care system who were telematics, eHealth, and information technology experts (eHealth experts). The interviews were transcribed verbatim and subjected to a content analysis. RESULTS: From the expert perspective, a PHR was basically considered desirable and unavoidable. At the same time, a number of challenges for implementation in Germany have been outlined. Three crucial themes emerged: (1) documentation standards: prevailing processes of the analog bureaucratic paper world, (2) interoperability: the plurality of actors and electronic systems, and (3) political structure: the lack of clear political regulations and political incentive structures. CONCLUSIONS: With regard to the implementation of a PHR, an important precondition of a successful digitalization will be the precedent reform of the system to be digitized. Whether the recently passed Act for Faster Appointments and Better Care will be a step in the right direction remains to be seen.


Subject(s)
Electronic Health Records/standards , Health Services/standards , Telemedicine/methods , Germany , Humans , Qualitative Research
10.
BMC Med Inform Decis Mak ; 20(1): 158, 2020 07 13.
Article in English | MEDLINE | ID: mdl-32660600

ABSTRACT

BACKGROUND: Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR). METHODS: A descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed. RESULTS: Two main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights' - consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR. CONCLUSIONS: In order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be enhanced. TRIAL REGISTRATION: ISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).


Subject(s)
Health Records, Personal , Neoplasms , Adult , Aged , Caregivers , Electronic Health Records , Electronics , Female , Germany , Humans , Male , Middle Aged , Patients , Role
12.
J Med Internet Res ; 20(3): e105, 2018 03 27.
Article in English | MEDLINE | ID: mdl-29588269

ABSTRACT

BACKGROUND: Information technology tools such as shared patient-centered, Web-based medication platforms hold promise to support safe medication use by strengthening patient participation, enhancing patients' knowledge, helping patients to improve self-management of their medications, and improving communication on medications among patients and health care professionals (HCPs). However, the uptake of such platforms remains a challenge also due to inadequate user involvement in the development process. Employing a user-centered design (UCD) approach is therefore critical to ensure that user' adoption is optimal. OBJECTIVE: The purpose of this study was to identify what patients with type 2 diabetes mellitus (T2DM) and their HCPs regard necessary requirements in terms of functionalities and usability of a shared patient-centered, Web-based medication platform for patients with T2DM. METHODS: This qualitative study included focus groups with purposeful samples of patients with T2DM (n=25), general practitioners (n=13), and health care assistants (n=10) recruited from regional health care settings in southwestern Germany. In total, 8 semistructured focus groups were conducted. Sessions were audio- and video-recorded, transcribed verbatim, and subjected to a computer-aided qualitative content analysis. RESULTS: Appropriate security and access methods, supported data entry, printing, and sending information electronically, and tracking medication history were perceived as the essential functionalities. Although patients wanted automatic interaction checks and safety alerts, HCPs on the contrary were concerned that unspecific alerts confuse patients and lead to nonadherence. Furthermore, HCPs were opposed to patients' ability to withhold or restrict access to information in the platform. To optimize usability, there was consensus among participants to display information in a structured, chronological format, to provide information in lay language, to use visual aids and customize information content, and align the platform to users' workflow. CONCLUSIONS: By employing a UCD, this study provides insight into the desired functionalities and usability of patients and HCPs regarding a shared patient-centered, Web-based medication platform, thus increasing the likelihood to achieve a functional and useful system. Substantial and ongoing engagement by all intended user groups is necessary to reconcile differences in requirements of patients and HCPs, especially regarding medication safety alerts and access control. Moreover, effective training of patients and HCPs on medication self-management (support) and optimal use of the tool will be a prerequisite to unfold the platform's full potential.


Subject(s)
Diabetes Mellitus, Type 2/drug therapy , Diabetes Mellitus, Type 2/therapy , Focus Groups/methods , Health Personnel/standards , Medication Adherence/statistics & numerical data , Patient Participation/methods , Patient Portals/standards , Aged , Diabetes Mellitus, Type 2/pathology , Humans , Internet , Middle Aged , Qualitative Research
14.
Breast Cancer Res Treat ; 166(2): 501-509, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28780702

ABSTRACT

BACKGROUND: Most published studies evaluating digital breast tomosynthesis (DBT) included a separate 2-dimensional full-field digital mammogram (FFDM) for DBT screening protocols, increasing radiation from screening mammography. Synthesized mammography (SM) creates a 2-dimensional image from the DBT source data, and if used in place of FFDM, it reduces radiation of DBT screening. This study evaluated the implementation of SM + DBT in routine screening practice in terms of recall rates, cancer detection rates (CDR), % of minimal cancers, % of node-positive cancers, and positive predictive values (PPV). MATERIALS AND METHODS: A multivariate retrospective institutional analysis was performed on 31,979 women who obtained screening mammography (10/2013-12/2015) with cohorts divided by modality (SM + DBT, FFDM + DBT, and FFDM). We adjusted for comparison mammograms, age, breast density, and the interpreting radiologist. Recall type was analyzed for differences (focal asymmetry, asymmetry, masses, calcifications, architectural distortion). RESULTS: SM + DBT significantly decreased the recall rate compared to FFDM (5.52 vs. 7.83%, p < 0.001) with no differences in overall CDR (p = 0.66), invasive and/or in situ CDR, or percentages of minimal and node-negative cancers. PPV1 significantly increased with SM + DBT relative to FFDM (9.1 vs. 6.2%, p = 0.02). SM + DBT did not differ significantly in recall rate or overall CDR compared to FFDM + DBT. There were statistically significant differences in certain findings recalled by screening modality (e.g., focal asymmetries). CONCLUSIONS: SM + DBT reduces false positives compared to FFDM, while maintaining the CDR and other desirable audit outcome data. SM + DBT is more accurate than FFDM alone, and is a desirable alternative to FFDM + DBT, given the added benefit of radiation reduction.


Subject(s)
Breast Neoplasms/diagnostic imaging , Mammography/methods , Radiographic Image Enhancement/methods , Breast Density , Early Detection of Cancer , Female , Humans , Mass Screening , Retrospective Studies , Sensitivity and Specificity
15.
BMC Health Serv Res ; 17(1): 173, 2017 03 02.
Article in English | MEDLINE | ID: mdl-28253884

ABSTRACT

BACKGROUND: Lung cancer patients are often diagnosed in an advanced stage of disease. In a situation of palliative treatment, both patients and their relatives experience existential burden. Evidence suggests that multi-professional teams should deal with them as dyads. However, little is known about differences in their individual situation. The purpose of this study is to explore and compare reflections that arise out of the context of diagnosis and to compare how patients and their relatives try to handle advanced lung cancer. METHODS: Data was collected by qualitative interviews. A total of 18 participants, 9 patients diagnosed with advanced lung cancer (ICD- 10 C-34, stage IV) starting or receiving palliative treatment and 9 relatives were interviewed. Data was interpreted using qualitative content analysis. RESULTS: Reflection aspects were "thoughts about the cause", "meaning of belief" and "experience of inequity". Patients often experienced the diagnosis as inequity and were more receptive for believing in treatment success. The main strategies found were "repression", "positive attitude", "strong focus on the present" and "adjustment of life terms". Patient and relative dyads used the same strategies, but with different emphasis. That life time is limited was more frequently realized by relatives than by patients. CONCLUSION: While strategies used by relatives are similar to those of patients', they are less reflective and more pragmatic in terms of handling daily life and organizing care. The interviewed patients were mostly not able to takeover these tasks. To strong was their belief in treatment success, their repression of the future and the focus on the present. This implicates, that in terms of end-of-life care, relatives are important to reach patients who are often not receptive to this topic.


Subject(s)
Attitude to Health , Lung Neoplasms/psychology , Adaptation, Psychological , Aged , Avoidance Learning , Communication , Family/psychology , Female , Humans , Lung Neoplasms/therapy , Male , Middle Aged , Qualitative Research , Terminal Care/psychology
17.
Am Fam Physician ; 103(11): 693-694, 2021 06 01.
Article in English | MEDLINE | ID: mdl-34060785
19.
Support Care Cancer ; 23(9): 2613-21, 2015 Sep.
Article in English | MEDLINE | ID: mdl-25652149

ABSTRACT

PURPOSE: The complexity of illness and cross-sectoral health care pose challenges for patients with colorectal cancer and their families. Within a patient-centered care paradigm, it is vital to give patients the opportunity to play an active role. Prospective users' attitudes regarding the patients' role in the context of a patient-controlled electronic health record (PEPA) were explored. METHODS: A qualitative study across regional health care settings and health professions was conducted. Overall, 10 focus groups were performed collecting views of 3 user groups: patients with colorectal cancer (n = 12) and representatives from patient support groups (n = 2), physicians (n = 17), and other health care professionals (HCPs) (n = 16). Data were audio- and videotaped, transcribed verbatim and thematically analyzed using qualitative content analysis. RESULTS: The patients' responsibility as a gatekeeper and access manager was at the center of the focus group discussions, although HCPs addressed aspects that would limit patients taking an active role (e.g., illness related issues). Despite expressed concerns, PEPAs possibility to enhance personal responsibility was seen in all user groups. CONCLUSIONS: Giving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.


Subject(s)
Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/therapy , Electronic Health Records/organization & administration , Patient Participation/methods , Adult , Aged , Female , Focus Groups , Health Personnel , Humans , Male , Middle Aged , Patient-Centered Care , Pilot Projects , Prospective Studies , Qualitative Research
20.
Fam Pract ; 32(6): 686-93, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26311705

ABSTRACT

BACKGROUND: Colorectal cancer is becoming a chronic condition. This has significant implications for the delivery of health care and implies the involvement of a range of health care professionals (HCPs) from different settings to ensure the needed quality and continuity of care. OBJECTIVES: To explore the challenges that patients and HCPs experience in the course of colorectal cancer care and the perceived consequences caused by these challenges. METHODS: Ten semi-structured focus groups were conducted including patients receiving treatment for colorectal cancer, representatives of patient support groups, physicians and other non-physician HCPs from different health care settings. Participants were asked to share their experiences regarding colorectal cancer care. All data were audio- and videotaped, transcribed verbatim and thematically analysed using qualitative content analysis. RESULTS: Patients and HCPs (total N = 47) experienced collaboration and communication as well as exchange of information between HCPs as challenging. Particularly communication and information exchange with GPs appeared to be lacking. The difficulties identified restricted a well-working coordination of care and seemed to cause inappropriate health care. CONCLUSION: Colorectal cancer care seems to require an effective, well-working collaboration and communication between the different HCPs involved ensuring the best possible care to suit patients' individual needs. However, the perceived challenges and consequences of our participants seem to restrict the delivery of the needed quality of care. Therefore, it seems crucial (i) to include all HCPs involved, especially the GP, (ii) to support an efficient and standardized exchange of health-related information and (iii) to focus on the patients' entire pathway of care.


Subject(s)
Colorectal Neoplasms/therapy , Communication , Cooperative Behavior , Health Personnel/standards , Physician-Patient Relations , Adult , Aged , Female , Focus Groups , Humans , Information Dissemination/methods , Male , Middle Aged , Qualitative Research , Self-Help Groups
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