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Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

ABSTRACT: Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium-68-Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two-thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.

SUBMITTER: Leyden S

PROVIDER: S-EPMC7004101 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

Leyden Simone S Kolarova Teodora T Bouvier Catherine C Caplin Martyn M Conroy Siobhan S Davies Phillipa P Dureja Sugandha S Falconi Massimo M Ferolla Piero P Fisher George G Goldstein Grace G Hicks Rodney J RJ Lawrence Ben B Majima Yoshiyuki Y Metz David C DC O'Toole Dermot D Ruszniewski Philippe P Wiedenmann Bertram B Hollander Ronald R

International journal of cancer 20191025 5

Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 ...[more]

PMID: 31509608

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Project description:BackgroundThe COVID-19 pandemic severely affected everyday life and working conditions for most Europeans, particularly health care professionals (HCPs). Over the past 3 years, various policies have been implemented in various European countries. Studies have reported on the worsening of mental health, work-related stress, and helpful coping strategies. However, having a closer look is still necessary to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff.ObjectiveThis study aimed to obtain quantitative information on job-related stressors of physicians and nurses and the coping strategies of HCPs and nonmedical staff at 2 periods of the COVID-19 pandemic. By further analyzing qualitative comments, we wanted to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff on different levels of experience.MethodsA cross-sectional survey was conducted at 2 time points during the COVID-19 pandemic in several European countries. The first study period (T1) lasted between April 1 and June 20, 2020, and the second study period (T2) lasted between November 25, 2021, and February 28, 2022. On a quantitative level, we used a questionnaire on stressors for physicians and nurses and a questionnaire on coping strategies for HCPs and nonmedical staff. Quantitative data were descriptively analyzed for mean values and differences in stressors and coping strategies. Qualitative data of free-text boxes of HCPs and nonmedical staff were analyzed via thematic analysis to explore the experiences of the individuals.ResultsT1 comprised 609 participants, and T2 comprised 1398 participants. Overall, 296 participants made 438 qualitative comments. The uncertainty about when the pandemic would be controlled (T1: mean 2.28, SD 0.85; T2: mean 2.08, SD 0.90) and the fear of infecting the family (T1: mean 2.26, SD 0.98; T2: mean 2.02, SD 1.02) were the most severe stressors identified by physicians and nurses in both periods. Overall, the use of protective measures (T1: mean 2.66, SD 0.60; T2: mean 2.66, SD 0.60) and acquiring information about COVID-19 (T1: mean 2.29, SD 0.82; T2: mean 1.99, SD 0.89) were identified as the most common coping strategies for the entire study population. Using thematic analysis, we identified 8 themes of personal experiences on the micro, meso, and macro levels. Measures, working conditions, feelings and emotions, and social climate were frequently mentioned topics of the participants. In T1, feelings of isolation and uncertainty were prominent. In T2, feelings of exhaustion were expressed and vaccination was frequently discussed. Moreover, unmet psychosocial needs were identified.ConclusionsThere is a need for improvement in pandemic preparedness. Targeted vocational education measures and setting up of web-based mental health support could be useful to bridge gaps in psychosocial support needs in future crises.

Dataset Information

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

Publications

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

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