ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2018
Do carer's levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05082389 (Prediction of Hospital Readmissions in SAPV), which is not on this map. Cited by 39 papers, 3 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Prediction of Hospital Readmissions in SAPV (Specialised Home Palliative Care) Patients - Identification of Structural Factors and Support Needs of Family Caregivers
Who cites it
39 citing papers in PubMed, 3 syntheses or guidelines pooled it, 77 citations in OpenAlex.
- What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review.Journal of cancer survivorship : research and practice · 2024Pooled it
- Palliative care and end-of-life care in adults with malignant brain tumors.Neuro-oncology · 2023Pooled it
- Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review : Strategies for addressing the needs of high-grade glioma carers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Pooled it
- Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.Journal of neuro-oncology · 2023Trial
- Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers.Journal of neuro-oncology · 2018Trial
- Improving quality of care for patients with high-grade glioma and their informal caregivers: Insights from focus groups with healthcare professionals.Neuro-oncology practice · 2026Article
- Current and bereaved caregivers' experiences of participating in the adapted Telehealth Making Sense of Brain Tumour program in the context of high-grade glioma.Neuro-oncology practice · 2026Article
- Nurse-identified needs, recommendations, and referrals during consultations with family carers of patients diagnosed with high-grade glioma.Neuro-oncology practice · 2025Article
- Healthcare professionals' perspectives on barriers and facilitators to managing brain tumor-related personality and behavior changes.Neuro-oncology practice · 2025Article
- Understanding Health Information Needs: An Evaluation of Co-Design Video-Assisted Education.Journal of cancer education : the official journal of the American Association for Cancer Education · 2025Article
- Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer.Psycho-oncology · 2025Article
- "What is this brain's story?" Healthcare professionals' perspectives on managing brain tumor-related personality and behavior changes.Neuro-oncology practice · 2025Article
- Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma.Journal of patient-reported outcomes · 2025Article
- A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress.Neuro-oncology practice · 2024Article
- "Life…Gets Turned Upside-Down…" Opportunities to Improve Palliative Care for High-Grade Glioma.Journal of pain and symptom management · 2024Article
- The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients' perspective.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives.Neuro-oncology practice · 2024Article
- Article
- What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?Neuro-oncology practice · 2024Article
- Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma.Neuro-oncology practice · 2023Article
Corrections and comments
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Authors and funding
7 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
methodsFamily carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients' chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
resultsThe time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (moderate to high) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer's working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient's life and understanding the patient's experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient's behaviour and adjusting to changes in the patient's personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
conclusionCarers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.