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?
- 486 Downloads
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Family 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.
The 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.
Carers 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.
KeywordsHigh-grade glioma Carers Longitudinal study Distress Psychological impact Unmet needs
This project was funded by the Western Australian Cancer and Palliative Care Network, Department of Health Western Australia and a HOTTAH grant provided by the Clinical Oncology Society of Australia. The authors thank participants in the study, sites involved in recruitment and Celine Fournier and Jenny Clarke for their assistance in the data collection. Georgia Halkett is currently supported by a Cancer Council of WA Research Fellowship.
Compliance with ethical standards
Conflict of interest
The authors declare that they no conflicts of interest. We have full control of all primary data and agree to allow the journal to review the data if requested.
- 1.Gorlia T, Delattre JY, Brandes AA, Kros JM, Taphoorn MJ, Kouwenhoven MC, Bernsen HJ, Frenay M, Tijssen CC, Lacombe D, van den Bent MJ (2013) New clinical, pathological and molecular prognostic models and calculators in patients with locally diagnosed anaplastic oligodendroglioma or oligoastrocytoma. A prognostic factor analysis of European Organisation for Research and Treatment of Cancer Brain Tumour Group Study 26951. Eur J Cancer 49(16):3477–3485. doi: 10.1016/j.ejca.2013.06.039 PubMedCrossRefGoogle Scholar
- 3.Perry JR, Laperriere N, O’Callaghan CJ, Brandes AA, Menten J, Phillips C, Fay M, Nishikawa R, Cairncross JG, Roa W, Osoba D, Rossiter JP, Sahgal A, Hirte H, Laigle-Donadey F, Franceschi E, Chinot O, Golfinopoulos V, Fariselli L, Wick A, Feuvret L, Back M, Tills M, Winch C, Baumert BG, Wick W, Ding K, Mason WP, Trial I (2017) Short-course radiation plus temozolomide in elderly patients with glioblastoma. N Engl J Med 376(11):1027–1037. doi: 10.1056/NEJMoa1611977 PubMedCrossRefGoogle Scholar
- 11.Sizoo EM, Pasman HR, Dirven L, Marosi C, Grisold W, Stockhammer G, Egeter J, Grant R, Chang S, Heimans JJ, Deliens L, Reijneveld JC, Taphoorn MJ (2014) The end-of-life phase of high-grade glioma patients: a systematic review. Support Care Cancer 22(3):847–857. doi: 10.1007/s00520-013-2088-9 PubMedCrossRefGoogle Scholar
- 14.Rooney AG, McNamara S, Mackinnon M, Fraser M, Rampling R, Carson A, Grant R (2013) The frequency, longitudinal course, clinical associations, and causes of emotional distress during primary treatment of cerebral glioma. Neuro-Oncology 15(5):635–643. doi: 10.1093/neuonc/not009 PubMedPubMedCentralCrossRefGoogle Scholar
- 15.Trad W, Koh ES, Daher M, Bailey A, Kastelan M, Legge D, Fleet M, Simpson GK, Hovey E (2015) Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination. Front Oncol 5:203. doi: 10.3389/fonc.2015.00203 PubMedPubMedCentralCrossRefGoogle Scholar
- 23.Jacobs DI, Kumthekar P, Stell BV, Grimm SA, Rademaker AW, Rice L, Chandler JP, Muro K, Marymont M, Helenowski IB, Wagner LI, Raizer JJ (2014) Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden. Neuro-oncology Practice 1(2):47–54. doi: 10.1093/nop/npu004 PubMedPubMedCentralCrossRefGoogle Scholar
- 28.Collins A, Lethborg C, Brand C, Gold M, Moore G, Sundararajan V, Murphy M, Philip J (2014) The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care 4(1):68–76. doi: 10.1136/bmjspcare-2012-000419 PubMedCrossRefGoogle Scholar
- 32.Moore G, Collins A, Brand C, Gold M, Lethborg C, Murphy M, Sundararajan V, Philip J (2013) Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns 91(2):141–153. doi: 10.1016/j.pec.2012.11.002 PubMedCrossRefGoogle Scholar
- 33.Sterckx W, Coolbrandt A, Dierckx de Casterle B, Van den Heede K, Decruyenaere M, Borgenon S, Mees A, Clement P (2013) The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. Eur J Oncol Nurs 17(1):107–117. doi: 10.1016/j.ejon.2012.04.006 PubMedCrossRefGoogle Scholar
- 35.Gessler S, Low J, Daniells E, Williams R, Brough V, Tookman A, Jones L (2008) Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? A prospective validation study. Psychooncology 17(6):538–547. doi: 10.1002/pon.1273 PubMedCrossRefGoogle Scholar
- 41.Oberoi DV, White V, Jefford M, Giles GG, Bolton D, Davis I, Winship I, Prince HM, Millar J, Harrison S, Kay A, Hill D (2016) Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors. Support Care Cancer 24(10):4177–4186. doi: 10.1007/s00520-016-3245-8 PubMedCrossRefGoogle Scholar
- 42.Butow PN, Price MA, Bell ML, Webb PM, de Fazio A, Australian Ovarian Cancer Study G, Australian Ovarian Cancer Study Quality Of Life Study I, Friedlander M (2014) Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol 132(3):690–697. doi: 10.1016/j.ygyno.2014.01.002 PubMedCrossRefGoogle Scholar
- 44.Boele F, Hoeben W, Hilverda K, Lenting J, Calis A, Sizoo EM, Collette E, Heimans JJ, Taphoorn MJ, Reigneveld J, Klein M (2013) Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomised controlled trial. J Neuro Oncol 111(3):303–311CrossRefGoogle Scholar
- 45.Halkett GK, Lobb EA, Miller L, Shaw T, Moorin R, Long A, King A, Clarke J, Fewster S, Nowak AK (2017) Feasibility testing and refinement of a supportive educational intervention for Carers of patients with high-grade glioma—a pilot study. J Cancer Educ. doi: 10.1007/s13187-017-1175-x CrossRefGoogle Scholar
- 46.Halkett GK, Lobb EA, Miller L, Phillips JL, Shaw T, Moorin R, Long A, King A, Clarke J, Fewster S, Hudson P, Agar M, Nowak AK (2015) Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG). BMJ Open 5(10):e009477. doi: 10.1136/bmjopen-2015-009477 PubMedPubMedCentralCrossRefGoogle Scholar