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1.
Trials ; 22(1): 666, 2021 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-34583744

RESUMO

BACKGROUND: Despite the progress of research and treatment for breast cancer, still up to 30% of the patients afflicted will develop distant disease. Elongation of survival and maintaining the quality of life (QoL) become pivotal issues guiding the treatment decisions. One possible approach to optimise survival and QoL is the use of patient-reported outcomes (PROs) to timely identify acute disease-related burden. We present the protocol of a trial that investigates the effect of real-time PRO data captured with electronic mobile devices on QoL in female breast cancer patients with metastatic disease. METHODS: This study is a randomised, controlled trial with 1:1 randomisation between two arms. A total of 1000 patients will be recruited in 40 selected breast cancer centres. Patients in the intervention arm receive a weekly request via an app to complete the PRO survey. Symptoms will be assessed by study-specific optimised short forms based on the EORTC QLQ-C30 domains using items from the EORTC CAT item banks. In case of deteriorating PRO scores, an alarm is sent to the treating study centre as well as to the PRO B study office. Following the alarm, the treating breast cancer centre is required to contact the patient to inquire about the reported symptoms and to intervene, if necessary. The intervention is not specified and depends on the clinical need determined by the treating physician. Patients in the control arm are prompted by the app every 3 months to participate in the PRO survey, but their response will not trigger an alarm. The primary outcome is the fatigue level 6 months after enrolment. Secondary endpoints include among others hospitalisations, use of rescue services and overall QoL. DISCUSSION: Within the PRO B intervention group, we expect lower fatigue levels 6 months after intervention start, higher levels of QoL, less unplanned hospitalisations and less emergency room visits compared to controls. In case of positive results, our approach would allow a fast and easy transfer into clinical practice due to the use of the already nationwide existing IT infrastructure of the German Cancer Society and the independent certification institute OnkoZert. TRIAL REGISTRATION: DRKS (German Clinical Trials Register) DRKS00024015 . Registered on 15 February 2021.


Assuntos
Neoplasias da Mama , COVID-19 , Doença Aguda , Neoplasias da Mama/terapia , Feminino , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , SARS-CoV-2
2.
Artigo em Inglês | MEDLINE | ID: mdl-34360515

RESUMO

(1) Background: Evidence suggests that organizational processes of hospitals have an impact on patient-professional interactions. Within the nurse-patient interaction, nurses play a key role providing social support. Factors influencing the nurse-patient interaction have seldomly been researched. We aimed to examine whether the process organization in hospitals is associated with breast cancer patients' perceived social support from nurses.; (2) Methods: Data analysis based on a cross-sectional patient survey (2979 breast cancer patients, 83 German hospitals) and information on hospital structures. Associations between process organization and perceived social support were analyzed with logistic hierarchical regression models adjusted for patient characteristics and hospital structures.; (3) Results: Most patients were 40-69 years old and classified with UICC stage II or III. Native language, age and hospital ownership status showed significant associations to the perception of social support. Patients treated in hospitals with better process organization at admission (OR 3.61; 95%-CI 1.67, 7.78) and during the hospital stay (OR 2.11; 95%-CI 1.04; 4.29) perceived significantly more social support from nurses.; (4) Conclusions: Designing a supportive nursing work environment and improving process organization in hospitals may create conditions conducive for a supportive patient-nurse interaction. More research is needed to better understand mechanisms behind the associations found.


Assuntos
Neoplasias da Mama , Recursos Humanos de Enfermagem no Hospital , Adulto , Idoso , Neoplasias da Mama/terapia , Estudos Transversais , Feminino , Hospitais , Humanos , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Inquéritos e Questionários , Local de Trabalho
3.
Psychooncology ; 2021 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-34272908

RESUMO

OBJECTIVE: This study explores rehabilitation processes in long-term cancer survivors (CSs) and explains the causes, contexts, and consequences under which decisions related to rehabilitation are made. METHODS: Within the mixed-methods Breast Cancer Patients' Return to Work (B-CARE) project, conducted from 2018-2020, data were collected through a written survey and semi-structured interviews with CSs 5-6 years after their diagnosis. In total, 184 female CSs participated in the survey, and 26 were interviewed. A qualitative grounded theory approach was applied. RESULTS: The 26 interviewees were 57 years old on average, 70% were married, and 65% had children. The participants experienced incompatibilities caused by the cancer disease in their areas of life and the demands that arose from it. To reconcile demands from the areas family, work, leisure time, household, and disease, the interviewed CSs used different coping mechanisms and adjusted their lives by prioritizing certain areas as a consequence. This prioritizing was often to the detriment of work and rehabilitation. Furthermore, it worked as a barrier for participation in rehabilitation programs and explains why CSs experienced job changes after their return to work. CONCLUSIONS: Physical and mental long-term effects were observed in the interviewees' lives 5-6 years into survival. The study results stress the importance of individualized and needs-oriented survivorship care.

4.
Health Informatics J ; 27(2): 14604582211015704, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34082597

RESUMO

BACKGROUND: The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR. METHODS: Eleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate). RESULTS: Consensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site's relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements. CONCLUSIONS: International collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.


Assuntos
Benchmarking , Indicadores de Qualidade em Assistência à Saúde , Atenção à Saúde , Humanos , Masculino , Sistema de Registros , Inquéritos e Questionários
5.
BMC Cancer ; 21(1): 671, 2021 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-34090379

RESUMO

BACKGROUND: Integrated social care may help to mitigate social risk factors in order to achieve more equitable health outcomes. In cancer centers certified according to the criteria set out by the German Cancer Society, every patient must be given low-threshold access to qualified social workers at the center for in-house social service counseling (SSC). Previous analyses have demonstrated large variation in the utilization of these services across individual centers. Therefore, this research aims at investigating whether SSC utilization varies regarding breast cancer patient characteristics and center characteristics presenting a unique approach of using routine data. METHODS: Multilevel modeling was performed using quality assurance data based on 6339 patients treated in 13 certified breast cancer centers in Germany in order to investigate whether SSC utilization varies with patient sex, age, and disease characteristics as well as over time and across centers. RESULTS: In the sample, 80.3% of the patients used SSC. SSC use varies substantially between centers for the unadjusted model (ICC = 0.24). Use was statistically significantly (P < .001) more likely in women, patients with invasive (in comparison to tumor in situ/ductal carcinoma in situ) diseases (P < .001), patients with both breasts affected (P = .03), patients who received a surgery (P < .001), patients who were diagnosed in 2015 or 2017 compared to 2016 (P < .001) and patients older than 84 years as compared to patients between 55 and 64 years old (P = .002). CONCLUSION: The analysis approach allows a unique insight into the reality of cancer care. Sociodemographic and disease-related patient characteristics were identified to explain SSC use to some extent.


Assuntos
Neoplasias da Mama/terapia , Aconselhamento/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Garantia da Qualidade dos Cuidados de Saúde/estatística & dados numéricos , Serviço Social/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/economia , Feminino , Alemanha , Humanos , Pessoa de Meia-Idade
6.
Support Care Cancer ; 2021 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-34137933

RESUMO

OBJECTIVE: This study investigated the prevalence, individual courses, and determinants of fear of cancer recurrence (FoR) in long-term breast cancer survivors (BCSs) with and without recurrence. METHODS: A total of 184 breast cancer survivors were surveyed at four measurement time points: during hospitalization (T1), 10 weeks (T2), 40 weeks (T3), and 5-6 years (T4) after hospital discharge. Descriptive statistics, chi-square tests, and logistic regression were performed. RESULTS: Respondents were females and 57 years old, on average. At T1, T3, and T4, 54.8%, 31.6%, and 29.7% of BCSs, respectively, were classified as having dysfunctional levels of FoR. Dysfunctional FoR decreased from T1 to T3 (χ2(1) = 17.11, p = 0.000; N = 163) and remained stable afterwards. Eight subgroups of individual courses of FoR over time could be described: (1) constant functional FoR; (2) constant dysfunctional FoR; (3) improving from dysfunctional to functional FoR from T1 to T3; (4) improving from dysfunctional to functional FoR from T3 to T4; (5) worsening from functional to dysfunctional FoR from T1 to T3; (6) worsening from functional to dysfunctional FoR from T3 to T4; (7) dysfunctional FoR at T1 and T4, and functional FoR in between; and (8) functional FoR at T1 and T4, and dysfunctional FoR in between. Logistic regression analysis revealed that being divorced/widowed, showing high levels of fatigue, being treated by chemotherapy, and having low confidence in treatment were associated with dysfunctional FoR 5 to 6 years after diagnosis (Nagelkerkes' Pseudo-R2 = 0.648). CONCLUSIONS: The findings reveal that FoR is a significant issue in long-term BCSs and has the potential to become a persistent psychological strain. We emphasize the need for increased awareness of FoR among BCSs and the need for support programs.

7.
BMC Health Serv Res ; 21(1): 448, 2021 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-33975586

RESUMO

BACKGROUND: There has been increasing interest in integrating patient-reported outcomes (PROs) into routine oncological practice. To date, however, PROs have rarely been implemented in Germany. Currently, PROs are being used as performance measures in colorectal cancer centers in Germany. This content analysis identified factors that may inhibit or facilitate the additional use of PROMs for individual patient management. METHODS: The analysis follows an exploratory approach. Out of 103 centers that participated in a multicentric PRO quality management and benchmarking program in Germany, twelve oncological health-care providers from eight certified colorectal cancer centers were interviewed using a semi-structured interview guide. The interviewees were clinicians (physicians, nurses, psycho-oncologist and physician assistant) who care for colorectal cancer patients. This analysis evaluated whether and how PROs that are primarily collected for quality management/benchmarking reasons could also be used for the management of individual patients. The data was analyzed using a content-analysis approach. RESULTS: The interviewees were not using PRO in their routine clinical work, but they recognized its added value and pointed out potential example uses. Identified inhibiting factors for the use of PROs in clinical routine work were effortful access to PRO reports, lacking coordinating structures, time delays and time points of measurements as well as redundancy with other instruments. Facilitating factors for the use of PROs in clinical routine work that were identified included access via electronic patient records, implementation of coordinating structures for PRO processes in the center, clear PRO reports that are easy to interpret, and measurements at relevant time points. DISCUSSION: Clinicians had quite a positive attitude toward PROs and recognized their added value. Inhibiting and facilitating factors of an organizational and technical nature were identified. CONCLUSIONS: These findings indicate how PROs used for quality management purposes may also be used for the management of individual patients. Therefore, existing structures and processes in the certified colorectal cancer centers, as well as lessons learned from the literature on the implementation of PROs monitoring individual patients need to be taken into account.


Assuntos
Neoplasias Colorretais , Indicadores de Qualidade em Assistência à Saúde , Neoplasias Colorretais/terapia , Alemanha , Humanos , Oncologia , Medidas de Resultados Relatados pelo Paciente
8.
Artigo em Inglês | MEDLINE | ID: mdl-33914125

RESUMO

PURPOSE: Since 2008, guidelines recommend that patients with HER2-positive early breast cancer (BC) should receive adjuvant chemotherapy in combination with trastuzumab in Germany. However, recent studies highlight that a substantial share of patients do not receive trastuzumab. We investigate which patient characteristics are associated with a tumor board recommendation for trastuzumab in Breast Cancer Centers (BCC) certified by the German Cancer Society (DKG) and the German Society for Senology, and if the recommendation differs between BCCs. MATERIALS AND METHODS: Multi-level modeling was performed using quality assurance data based on 3052 HER2-positive, operated patients with a first diagnosis of early BC treated between 2006 and 2019 in 17 BCCs in Germany to investigate whether trastuzumab recommendation varies with patient sex, age, and disease characteristics, as well as over time and across BCCs. RESULTS: Tumor board recommendations for trastuzumab differ substantially between BCCs (intraclass correlation coefficient [ICC] null model: 0.11). Our final model (ICC 0.17, Akaike Information Criterion [AIC], 1328.0, R2 0.69) shows that physicians in BCCs more often recommend trastuzumab to patients who are younger than 60 years and those with a recommendation for any additional therapy (chemotherapy, radiation or endocrine therapy) (all p < 0.05). Furthermore, there is a significant time-dependent increase of trastuzumab recommendations (odds ratio [OR] = 1.38, 95% confidence interval [CI] = 1.31-1.46, p < 0.05). CONCLUSION: In certified BCCs in Germany, guideline concordant trastuzumab recommendation is increasing since 2006 (positive cohort effect). Recommendation of trastuzumab for HER2-positive BC patients in BCCs is significantly associated with patients' age and the recommendations for other additional therapy strategies, apart from surgery. The quality assurance data analyzed do not include potentially relevant confounders, such as socioeconomic status or comorbidities.

9.
J Cancer Surviv ; 2021 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-33907994

RESUMO

PURPOSE: Considering that breast cancer survivors (BCSs) have been dealing with unwanted job changes after diagnosis, this study aimed to investigate involuntary job changes (unwanted modifications in employment since diagnosis) and explore the association between job changes, involuntariness, and occupational development satisfaction in BCSs 5-6 years after diagnosis. METHODS: Data were drawn from the mixed-methods breast cancer patients' return to work (B-CARE) study. We surveyed 184 female BCSs who were working at the time of study enrollment during hospitalization (T1), 10 weeks after discharge (T2), 40 weeks after discharge (T3), and 5-6 years after diagnosis (T4) and used descriptive measures and stepwise linear regression models for data analysis. RESULTS: The mean age of BCSs was 57 years. A total of 105 participants reported 410 job changes, of which 16.1% were reportedly (rather) involuntary. The most commonly reported involuntary changes were increased workload (15.2%) and increased scope of work (15.2%). In the final model, significant predictors of satisfaction with occupational development 5-6 years after diagnosis were age, state of health ΔT2-T3, state of health ΔT3-T4, and involuntariness of job changes. CONCLUSIONS: Although the number of job changes alone is not substantially associated with BCSs' satisfaction with occupational development, experiencing involuntary job changes is. Sociodemographic, disease-related, and work(place)-related factors may influence occupational satisfaction among BCSs. IMPLICATIONS FOR CANCER SURVIVORS: The findings indicate the importance of strengthening one's ability to work as desired to prevent involuntary job changes and enable desired work participation in long-term support. The significance of workplace characteristics highlights the need for employers to encourage satisfying work participation. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00016982), 12 April 2019.

10.
BMC Health Serv Res ; 21(1): 366, 2021 Apr 20.
Artigo em Inglês | MEDLINE | ID: mdl-33879141

RESUMO

INTRODUCTION: Patient-reported outcomes (PROs) can be used in cancer care to monitor patients' disease-related symptoms and functional status. However, successful implementation of such instruments is only possible if clinical staff are convinced of the clinical benefits. It is therefore crucial to investigate the attitudes of clinical staff to PROs in routine cancer care. METHODS: Semi-structured, guideline-based interviews were held with 12 clinicians working in certified colorectal cancer centers in Germany who are taking part in an observational study on PROs (five surgeons, two oncologists, one psycho-oncologist, two oncological care nurses, one stoma therapist, and one physician assistant) in order to investigate firstly, how clinicians describe PRO instruments ("wording"); and secondly, the clinicians' general attitude toward PROs. A qualitative content analysis according to Kuckartz was performed. RESULTS: The wording used to describe PROs was not consistent. Statements on attitudes toward PROs were very heterogeneous and were therefore categorized into "(rather) positive" and "(rather) negative." The principal advantages of PROs mentioned by participants included broader, structured knowledge about patients and treatment, as well as relevance for patients. Subcategories for (rather) negative attitudes included statements expressing doubts about the questionnaires and "no need for PROs." DISCUSSION: The clinicians participating mainly expressed fairly positive attitudes toward PROs. However, they had little knowledge about PROs in general and the interviews therefore mainly reflect their expectations and assumptions about them. These initial impressions may be regarded as providing a basis for future implementation strategies and for training of clinicians on how to use PROs in routine cancer care.


Assuntos
Neoplasias Colorretais , Medidas de Resultados Relatados pelo Paciente , Atitude , Atitude do Pessoal de Saúde , Neoplasias Colorretais/terapia , Alemanha , Humanos , Inquéritos e Questionários
13.
Eur J Cancer Care (Engl) ; 30(4): e13402, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33486818

RESUMO

OBJECTIVE: Knowledge regarding the occupational rehabilitation of male breast cancer patients (MBCPs) is currently scarce; however, there may exist unmet needs of men affected by this rare disease. Therefore, this exploratory study investigated the experiences of MBCPs in their return to work (RTW). METHODS: Interview data from 14 men with a breast cancer diagnosis were used for qualitative content analysis. Data were collected within the mixed-methods N-MALE project (Male breast cancer: patients' needs in prevention, diagnosis, treatment, rehabilitation, and follow-up care), conducted in Germany from 2016 to 2018. RESULTS: The eight identified motives for RTW were desire for normalcy, distraction, need for activity, social contacts, work as a source of pleasure, financial considerations, lack of self-perception of illness, and having a job requiring low physical effort. The participants reported positive experiences with their workplaces from diagnosis through RTW. However, stigmatisation occurred. The aftermath of the disease and treatment led to changes in the interviewees' productivity, for instance due to fatigue. CONCLUSION: The findings of this study contribute to a better understanding of RTW processes, as new insights were gained about motives and experiences particular to MBCPs. Support needs after return were apparent and may help to reduce long-term effects that limit productivity.


Assuntos
Neoplasias da Mama Masculina , Humanos , Masculino , Motivação , Pesquisa Qualitativa , Retorno ao Trabalho , Local de Trabalho
14.
World J Urol ; 39(1): 27-36, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32040715

RESUMO

PURPOSE: The self-reported functional status (sr-FS) of prostate cancer (PCa) patients varies substantially between patients and health-care providers before treatment. Information about this issue is important for evaluating comparisons between health-care providers and to assist in treatment decision-making. There have been few reports on correlates of pretherapeutic sr-FS. The objective of the article, therefore, is to describe clinical and sociodemographic correlates of pretherapeutic sr-FS, based on a subset of the TrueNTH Global Registry, a prospective cohort study. METHODS: A total of 3094 PCa patients receiving local treatment in 44 PCa centers in Germany were recruited between July 2016 and April 2018. Multilevel regression models were applied to predict five pretherapeutic sr-FS (EPIC-26) scores based on clinical characteristics (standard set suggested by the International Consortium for Health Outcomes Measurement), sociodemographic characteristics, and center characteristics. RESULTS: Impaired pretherapeutic sr-FS tended to be associated with lower educational level and poorer disease characteristics-except for "urinary incontinence" which was only associated with age. Notably, age was a risk factor ("urinary incontinence," "urinary irritative/obstructive," "sexual") as well as a protective factor ("hormonal") for pretherapeutic sr-FS. Pretherapeutic sr-FS varies little across centers. CONCLUSIONS: Pretherapeutic sr-FS varies by clinical patient characteristics and age as well as by socioeconomic status. The findings point out the benefit of collecting and considering socioeconomic information in addition to clinical and demographic patient characteristics for treatment decision-making and fair comparisons between health-care providers.

15.
Strahlenther Onkol ; 197(2): 116-117, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32548712

RESUMO

Since 2016, certified prostate cancer centres have been able to participate in the Prostate Cancer Outcomes (PCO) study. The aim of this study is to compare outcomes across centres after local treatment for prostate cancer. The study originated from a support group initiative and is jointly carried out by the German Cancer Society (Deutsche Krebsgesellschaft), the certification institute OnkoZert, patient support groups and the participating centres. So far, centres have been more successful at recruiting patients undergoing surgery than those receiving radiotherapy as the definitive treatment. This means that conclusions for the latter group of patients are almost impossible. It is important to us that all types of treatment are equally well represented in the study; thus, we encourage radiation therapists to participate in the PCO study.


Assuntos
Institutos de Câncer , Neoplasias da Próstata/terapia , Alemanha , Humanos , Masculino , Neoplasias da Próstata/radioterapia , Neoplasias da Próstata/cirurgia , Sociedades Médicas , Resultado do Tratamento
16.
World J Urol ; 39(1): 11-25, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31552467

RESUMO

PURPOSE: For patients with prostate cancer, validated and reliable instruments are essential for measuring patient-reported outcomes. The aim of this study was to validate the German version of the widely established Expanded Prostate Cancer Index Composite with 26 items (EPIC-26). METHODS: A German translation of the original questionnaire was tested in 3094 patients with localized or locally advanced (any T, any N and M0) prostate cancer with treatment intent (including radical prostatectomy, brachytherapy, active surveillance, watchful waiting). They completed the EPIC-26 questionnaire before treatment. A total of 521 of them also completed a questionnaire 12 months afterward. Internal consistency, sensitivity to change, and construct validity were assessed. RESULTS: The internal consistency of all domains was sufficient (Cronbach's alpha between 0.64 and 0.93). Item-to-scale correlation coefficients showed acceptable associations between items and their domain score (all > 0.30), with the lowest scores for "bloody stools" (r = 0.37) and "breast problems" (r = 0.32). Confirmatory and exploratory factor analysis confirmed the five-dimension structure of the EPIC-26 (comparative fit index 0.95). CONCLUSIONS: Psychometric evaluation suggests that the German version of the EPIC-26 is a well-constructed instrument for measuring patient-reported health-related symptoms in patients with prostate cancer.

18.
Z Evid Fortbild Qual Gesundhwes ; 156-157: 11-23, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32980282

RESUMO

INTRODUCTION: To give an overview of patient-reported outcome measures (PROMs) programs in routine cancer care that allow for both major purposes of PROM assessment: 1) monitoring of an individual patient's outcome to assist treatment decision making, and 2) use in quality improvement initiatives including the benchmarking of providers. We synthesize information on program elements like the mode of assessment and questionnaire used, as well as information relevant for adaptation following a PDCA scheme. METHOD: We carried out a systematic literature research in the databases PubMed and EMBASE using MeSH terms and keywords related to PROM assessment in routine cancer care to identify eligible studies published between January 2003 and November 2018 (PROSPERO reg. no. CRD42019141402). We included studies in which PROM assessment programs had been reported as being implemented in clinical practice as well as collected multicentrically with at least one site in Europe and in which PROMs had been collected before and at least once after intervention. Study authors were queried to verify or correct the program elements extracted and merged during the review. Study quality assessment was not done, since it is not expedient for the objective of this review. RESULTS: Overall, 5,545 unique references were identified, 5,416 of which were excluded after the screening of titles and abstracts. Of the 29 references assessed, five programs were identified and included in the synthesis. The programs included those from Germany, Austria, Denmark, the Netherlands and the UK, and patients with different cancer types and tumor stages, which used paper-based or purely electronic PROM assessment. DISCUSSION AND CONCLUSION: Few reports have so far been published on PROM programs that allow for both the monitoring of an individual patient's outcome and use in quality improvement initiatives. The studies revealed relevant information on existing PROM programs and gave valuable insight into issues that need to be considered when setting up such an infrastructure. Some critical issues, however, were hardly addressed, among them costs, staff resources and methods of reporting and responding.


Assuntos
Neoplasias , Medidas de Resultados Relatados pelo Paciente , Áustria , Europa (Continente) , Alemanha , Humanos , Neoplasias/terapia , Países Baixos
19.
Gesundheitswesen ; 82(8-09): 716-722, 2020 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-32961567

RESUMO

" There are more and more good reasons for using existing care data, with the focus in particular on the use of register data. The associated, clearly structured methodological procedure has so far been insufficiently combined, prepared and presented transparently. The German Network for Health Services Research (DNVF) has therefore set up an ad hoc commission for the use of routine practice data (RWE/RWD). The rapid report prepared by IQWiG on the scientific development of concepts for "generation of care-related data and their evaluation for the purpose of benefit assessment of medicinal products according to § 35a SGB V" is an essential step for the use of register data for the generation of evidence. The "Memorandum Register - Update 2019" published by DNVF 2020 also describes the requirements and methodological foundations of registers. Best practice examples from oncology, which are based on the uniform oncological basic data set for clinical cancer registration (§ 65c SGB V), show, for example, that guidelines can be checked and recommendations for guidelines and necessary interventions can be derived in the sense of knowledge-generating health services research using register data. At the same time, however, there are no clear quality requirements and structured formal and content-related procedures in the areas of data consolidation, data verification and the use of specific methods depending on the question at hand. The previously inconsistent requirements are to be revised and a method guide for the use of suited data is to be developed and published. The first chapter of the manual on methods of care-related data explains the objective and structure of the manual. It explains why the use of the term "routine practice data" is more effective than the use of the terms Real Word Data (RWD) and Real World Evidence (RWE). By avoiding the term "real world" it should be emphasized in particular that high-quality research can also be based on routine practice data (e. g. register-based comparative studies).


Assuntos
Pesquisa sobre Serviços de Saúde , Projetos de Pesquisa , Análise de Dados , Interpretação Estatística de Dados , Alemanha
20.
Gesundheitswesen ; 82(8-09): e108-e121, 2020 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-32858754

RESUMO

Health services research in oncology deals with all situations which cancer patients face. It looks at the different phases of care, i. e. prevention / early detection, prehabilitation, diagnostics, therapy, rehabilitation and palliative care as well as the various actors, including those affected, the carers and self-help. It deals with healthy people (e. g. in the context of prevention / early detection), patients and cancer survivors. Due to the nature of cancer and the existing care structures, there are a number of specific contents for health services research in oncology compared to general health services research while the methods remain essentially identical. This memorandum describes the subject, illustrates the care structures and identifies areas of health services research in oncology. This memorandum has been prepared by the Oncology Section of the German Network for Health Services Research and is the result of intensive discussions.


Assuntos
Pesquisa sobre Serviços de Saúde , Oncologia , Medicina , Alemanha , Humanos , Cuidados Paliativos
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