The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis

Guccione, Lisa; Gough, Karla; Drosdowsky, Allison; Price, Timothy; Pavlakis, Nick; Wyld, David; Ransom, David; Michael, Michael; Schofield, Penelope

doi:10.1016/j.pec.2021.05.006

Cited by 3 publications

(6 citation statements)

References 43 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…As previously published in Guccione et al (2022), compared with general population norms, patients with NETs report significant financial difficulties. Financial toxicity is well reported in the literature [ 19 , 32 , 33 ], and results from this study suggest these are persistent, with 84% of participants reporting ongoing or worsening financial problems compared to baseline.…”

Section: Discussionsupporting

confidence: 57%

“…The priority of needs reported by the NET patient population has predominantly been within psychological, physical, and daily living, and health system information domains, with information needs being most prevalent for patients diagnosed within the previous 6 months [ 18 , 19 ]. However, despite the prominent need for disease-related information, it has been previously found that 69% of newly diagnosed patients reported either not receiving any written information about their cancer, or when it was received, not understanding it.…”

Section: Introductionmentioning

confidence: 99%

“…However, despite the prominent need for disease-related information, it has been previously found that 69% of newly diagnosed patients reported either not receiving any written information about their cancer, or when it was received, not understanding it. Most patients access disease-related information online [ 20 ]; nevertheless, two-thirds of newly diagnosed NET patients do not find the online information resources useful [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

“…Information needs are known to be greatest at diagnosis and at the start of treatment, declining over time [ 21 ]. We have previously reported that, at diagnosis, patients with both functioning and non-functioning NETs report disease-specific information to be of a high priority [ 19 ]. Specifically, most patients reported negative experiences with understanding the explanation of what was wrong with them (67%), receiving written information about their cancer (69%), their family/carer receiving all the information required to care for them (61%), and the usefulness of information about NETs online (66%).…”

Section: Introductionmentioning

confidence: 99%

“…Specifically, most patients reported negative experiences with understanding the explanation of what was wrong with them (67%), receiving written information about their cancer (69%), their family/carer receiving all the information required to care for them (61%), and the usefulness of information about NETs online (66%). Most reported at least one moderate-to-high need for disease-specific information (63%) [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis

Guccione,

Gough,

Drosdowsky

et al. 2023

Support Care Cancer

Self Cite

View full text Add to dashboard Cite

Objectives To identify changes in the healthcare preferences, patient experiences, and quality of life of patients with NETs at 6-month follow-up, informing the design of supportive care services. Methods This study presents 6-month follow-up data of a mixed-methods multi-site study. Demographic, clinical, and patient-reported outcome questionnaire data was collected. Results High percentages of suboptimal experiences of care were reported. Patients reported less positive experiences with being involved in decisions about their care and treatment; their family or someone close to them having the opportunity to talk to their cancer doctor, or having their family or someone close to them receive all the information they need to help care for them at home. Patients also reported negative experiences for on the information about their cancer accessible online and the usefulness of the information they accessed. Differences between baseline and follow-up scores were mostly not significant apart from anxiety and sleep disturbance scales, Conclusions Patients with NETs report difficulties in accessing and understanding written information that is persistent over time. Practice implications Outcomes will inform the design and development of an informational resource aimed at facilitating improved understanding for patients with NETs.

show abstract

Section: Discussionsupporting

confidence: 57%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis

Guccione,

Gough,

Drosdowsky

et al. 2023

Support Care Cancer

Self Cite

View full text Add to dashboard Cite

show abstract

Supportive Care Needs and Quality of Life among Cancer Patients in China: A Cross-sectional Study

Wang,

Hu,

Ding

et al. 2024

Preprint

View full text Add to dashboard Cite

Background This study aimed to examine the factors associated with unmet supportive care needs (SCNs) and to determine the correlation between unmet SCNs and quality of life (QoL) among cancer patients. Methods This cross-sectional study included 137 cancer patients who were recruited via convenience sampling from an oncology department at a tertiary cancer hospital in China. Three assessment instruments were employed herein: a general information questionnaire, the Chinese version of the Supportive Care Needs Survey short form (SCNS-SF34-C), and the functional subscale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). Results Among the five domains of the SCNS-SF34-C, the health system and information domain had the highest mean score (M = 2.74; SD = 0.75), followed by the psychological domain (M = 2.36; SD = 0.85). Five factors were found to be associated with the unmet SCNs of cancer patients: gender, educational background, disease awareness, smoking status, and drinking habits (all p < 0.05). Moreover, participants with unmet psychological, physical and daily living needs showed significantly lower QoL in all functional and symptom domains (all p < 0.05). Conclusions Chinese cancer patients have notable unmet health system and information needs. Future studies should design individualized interventions to improve supportive care among cancer patients and to enhance their QoL.

show abstract

Navigating Care: Understanding Cancer Patients’ Experiences with Systemic Radionuclide Therapy

Starkbaum,

Thircuir,

Winkler

et al. 2024

Preprint

View full text Add to dashboard Cite

Systemic Radionuclide Therapy (SRT), using the radioactive substance Lutathera (177LU), has emerged as a promising treatment option for neuroendocrine tumors (NETs). While studies suggest that SRT has rather positive health outcomes, there is a lack of research exploring patients’ experiences of this treatment. This may be because NETs are widely regarded as a rare disease and SRT as an emerging technology. This paper explores the journeys NET patients take to receive SRT and their perceptions of its clinical application. Our findings highlight the specific challenges that patients face with SRT and how some of these are mitigated in clinical practice. These include the often long journeys to specific treatment options, and how these may be subject to social inequalities. In the specific context of the clinic, we documented the challenges posed by the radiation involved, particularly the need for social isolation. We find that notions of care from the patient's perspective are relevant to increasing well-being and trust in medicine. Our study thus highlights the importance of care in a specific case of an emerging technology in cancer research, which typically receives much less attention than issues of innovation and risk management.

show abstract

The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis

Cited by 3 publications

References 43 publications

The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis

The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from diagnosis

Supportive Care Needs and Quality of Life among Cancer Patients in China: A Cross-sectional Study

Navigating Care: Understanding Cancer Patients’ Experiences with Systemic Radionuclide Therapy

Contact Info

Product

Resources

About