Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours

Beesley, Vanessa L.; Burge, Matthew; Dumbrava, Monica; Callum, Jack; Wyld, David

doi:10.1007/s00520-018-4166-5

Cited by 14 publications

(9 citation statements)

References 34 publications

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“…3). The identified themes in SSc care are in line with themes that were shown to be important in other chronic or rare diseases [12,13]. For instance, patients with neuroendocrine tumors (NET) experienced unmet needs in coordination of care and lack of non-pharmacological care.…”

Section: Discussionsupporting

confidence: 54%

Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

et al. 2018

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Introduction Systemic sclerosis (SSc) is a chronic autoimmune disease with multiorgan involvement. Objective Identify preferences and priorities among patients and health care professionals regarding care for SSc patients in The Netherlands. Develop ideas to improve quality of care. Methods A structured approach was followed to collect information from different perspectives to prepare a working conference. Qualitative and quantitative data from patients (n = 650), rheumatologists (n = 167), nurses (n = 51), and health professionals (n = 85) from regional centers and university hospitals were collected. In February 2018, a working conference was organized. Seventy-seven persons (including 10 SSc patients) from different backgrounds discussed the identified themes and survey results. Ideas to improve health care were formulated and prioritized using nominal group technique. Results Five key themes were identified: (1) shared care and multidisciplinary collaboration, (2) medical data exchange, (3) information for both patients and health care professionals, (4) patient empowerment, and (5) non-pharmacological care. Shared care was the preferred model of care in 49% of patients and 82% of physicians. However, current collaboration structures, especially between hospitals, should be improved. Suggestions for improvements were explicitly formulated agreements about referral, clear task division, treatment coordination, and exploration of novel ways to exchange medical records. The creation of a national web-based information hub was highly prioritized. Conclusion In this mixed-method study, broad-based consensus was achieved and recommendations were developed to improve health care for SSc patients. The approach, recommendations, and challenges summarized in this paper can be of use for health care professionals and other actors involved in patients with rare, chronic, and multisystem conditions.

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Section: Discussionsupporting

confidence: 54%

Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

et al. 2018

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“…Three studies (V.L. Beesley et al, 2018;Singh et al, 2017;Wolin et al, 2017) assessed unmet needs of patients with NET. Unmet needs were highest in the healthcare system and information domain (32-68%), followed by the physical and daily living domain (17-38%) and the patient care and support domain (11-48%), and these needs were reported throughout the whole disease trajectory.…”

Section: Unmet Needs Of Patients With Netmentioning

confidence: 99%

Unmet supportive care needs of patients with rare cancer: A systematic review

et al. 2021

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Objective: Patients with rare cancers may experience different unmet needs than those with common cancer. The objective of this systematic review was to (1) investigate unmet supportive care needs of rare cancer patients throughout the disease trajectory and (2) identify predictive factors for these unmet needs.Methods: PubMed, PsycINFO and CINAHL were searched for publications (January 2011 to March 2021) focusing on unmet needs of patients with rare cancer. Two reviewers independently selected studies, extracted data and performed quality assessment. Findings were synthesised. Results:The search yielded 4,598 articles, of which 59 articles met eligibility criteria and 57 were of medium or high quality. Rare cancer patients most frequently reported unmet needs in the healthcare system and information domain (up to 95%), followed by the psychological domain (up to 93%) and the physical and daily living domain (up to 80%). Unmet needs were mainly reported in the posttreatment phase.The most frequently identified predictors were higher anxiety, younger age and higher neuroticism. Conclusion:Patients with rare cancer have unmet needs throughout their disease trajectory. Supportive care needs of rare cancer patients should be addressed individually, depending on the rare cancer subdomain and phase of disease and from diagnosis onwards.

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“…Several studies have already documented high rates of neuropsychiatric symptoms in patients with NETs. In particular, depression, anxiety and difficulty in impulse control have been described in 20%–50%, 35% and 75% of NET patients, respectively 23‐28 . Moreover, NET patients have been shown to score considerably worse than healthy subjects in terms of HRQoL 29…”

Section: Discussionmentioning

confidence: 99%

“…in 20%-50%, 35% and 75% of NET patients, respectively. [23][24][25][26][27][28] Moreover, NET patients have been shown to score considerably worse than healthy subjects in terms of HRQoL. 29 The COVID-19 pandemic has added another layer of complexity to the fears of NET patients.…”

Section: Psychological Distressmentioning

confidence: 99%

The psychological impact of COVID‐19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Lauricella

Cives

Bracigliano

et al. 2021

J Neuroendocrinology

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The COVID-19 pandemic has added another layer of complexity to the fears of patients with neuroendocrine tumors (NETs). Little is known regarding the psychological impact of the COVID-19 outbreak on patients with gastroenteropancreatic or bronchopulmonary (BP) NETs. We longitudinally surveyed the mental symptoms and concerns of NET patients during the plateau phase of the first (W1) and second epidemic waves (W2) in Italy. Seven specific constructs (depression, anxiety, stress, health-related quality of life, NET-related quality of life, patient-physician relationship, psychological distress) were investigated using validated screening instruments,

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Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours

Abstract: NETs are experienced as a chronic illness. In addition to ongoing psychological and physical symptom management, improvements to case history documentation and discussions about coping and finance are recommended.

Cited by 14 publications

References 34 publications

Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

Unmet supportive care needs of patients with rare cancer: A systematic review

The psychological impact of COVID‐19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

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