Support Care Cancer DOI 10.1007/s00520-015-2739-0

ORIGINAL ARTICLE

Predicting distress among people who care for patients living longer with high-grade malignant glioma B. Russell 1 & A. Collins 1 & A. Dowling 2 & M. Dally 3 & M. Gold 4 & M. Murphy 5 & J. Burchell 6 & J. Philip 1

Received: 24 October 2014 / Accepted: 13 April 2015 # Springer-Verlag Berlin Heidelberg 2015

Abstract Purpose Caregivers of patients living longer with high-grade malignant glioma (HGG) have the unique challenge of caring for a person who may have cognitive impairment, along with cancer-related issues over a prolonged period of time. This study aims to detail the psychosocial profile of long-term caregivers, to describe their perceptions of the patient’s quality of life and to examine predictors of their psychological distress. Methods Sixty-nine caregivers (48 %) of eligible patients with HGG surviving over 2 years were recruited from two Australian metropolitan tertiary hospitals. Caregivers completed cross-sectional measures of psychological distress (GHQ-12), caregiver impact (FACQ-PC) and patient functional well-being (FACT-Br TOI). Correlational analyses identified factors related to caregiver psychological distress. Those of significance (p≤.01) were examined using multiple regression models to determine their predictive value.

* B. Russell [email protected] 1

2

Centre for Palliative Care, St Vincent’s Hospital Melbourne, 6 Gertrude Street, Fitzroy, Victoria 3065, Australia Department of Medical Oncology, St Vincent’s Hospital Melbourne, 41 Victoria Parade, Fitzroy, Victoria 3065, Australia

3

William Buckland Radiation Oncology Service, The Alfred Hospital, 55 Commercial Road, Melbourne, Victoria 3004, Australia

4

Department of Palliative Care, The Alfred Hospital, 55 Commercial Road, Melbourne, Victoria 3004, Australia

5

Department of Neurosurgery, St Vincent’s Hospital Melbourne, 41 Victoria Parade, Fitzroy, Victoria 3065, Australia

6

Department of Medicine, St Vincent’s Hospital Melbourne, University of Melbourne, 41 Victoria Parade, Fitzroy, Victoria 3065, Australia

Results Caregivers were mostly female (73 %), spouses (67 %), cohabiting (78 %) and were caring for patients surviving a median of 5.9 years since diagnosis. Whilst caregivers overall reported minimal psychological distress, 28 % endorsed moderate to severe psychological distress, warranting clinical attention. Caregiver strain and low patient functional well-being both significantly predicted caregiver psychological distress (adjusted R2 =.35, F(4, 60)=17.7, p5.5 million), with a diverse range of socio-demographic and cultural backgrounds. All referred patients are entered into these databases, regardless of whether or not treatment is recommended. Eligible patients were contacted by letter from their treating clinician to provide an overview of the study and invite them to nominate the adult most involved in their day-to-day life for possible study inclusion. Those patients who nominated their caregiver were also asked to provide consent for the researcher to access their medical records for collation of relevant disease and treatment information. Nominated caregivers were screened via telephone by the researcher (BJR), a palliative care physician, to ensure that they were eligible (proficient in English and able to provide informed consent) before being invited to participate. Caregivers who consented were provided with the postal survey and completed a brief clinical interview via telephone (BJR) to assess the functional status of the patient as described below. Caregiver-reported outcomes

Study design

Demographics Caregiver age, gender, relationship to the patient, locality and degree of remoteness (as measured by the Accessibility/Remoteness Index of Australia) [17] were selfreported. Patient’s age, gender, tumour characteristics, treatment and time since diagnosis were recorded from the clinic database for participating caregivers.

This study utilised a cross-sectional quantitative survey design involving caregiver-reported outcome measures to describe the psychosocial profile of caregivers of people living longer with HGG and examine factors predictive of worse psychological outcome. Ethics approval was granted by the relevant Institutional Human Research Ethics Committees. All participants gave informed consent prior to study inclusion.

Psychological distress Caregiver psychological distress was assessed using the General Health Questionnaire (GHQ-12) [18, 19], a 12-item validated instrument used to screen for common psychiatric illnesses in the general population. The Likert scoring method (0–3) was used as this detects severity as well as psychiatric caseness, which is the number of cases warranting further clinical attention [19, 20]. Scores range

Methods

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from 0 to 36, with 15–20 indicating the presence of psychological distress and over 20 indicating severe distress. Impact of caring The multi-dimensional impact of caring for a person with a terminal illness was assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC) [21]. The FACQ-PC is a 25-item validated, specific instrument comprising four subscales: caregiver strain, caregiver distress, positive appraisals of caregiving and family well-being. A mean score is generated for each subscale ranging from 1 to 5, with higher scores indicating greater levels of the issue being quantified by each subscale. Caregiver-reported patient outcomes Patient performance status Patient’s current Eastern Cooperative Oncology Group (ECOG) performance status [22] and Resource Utilisation Groups Activities of Daily Living (RUG-ADL) score [23] was established by the investigator (BJR) during a brief interview with the caregiver, involving standard clinical questioning. The ECOG status is a widely used ordinal scale of performance status, ranging from 0 (fully active) to 5 (dead) [22]. The RUG-ADL is an ordinal measure of independence, comprising four subscales of bed mobility, toileting, transfers and eating, with total score ranging from 4 (fully independent) to 18 (fully dependent) [23]. Patient quality of life Caregivers completed a proxy assessment of patient quality of life using the Functional Assessment of Cancer Therapy—Brain Trial Outcome Index (FACT-Br TOI) [24, 25]. The FACT-Br TOI is a validated instrument that measures disease- and treatment-specific quality of life of patients who have primary brain tumours across three domains: physical well-being, functional well-being and brainspecific concerns. The FACT-Br TOI was selected to provide a proxy estimation of the patient’s quality of life in terms of physical morbidity [26]. Scores range between 0 and 132 for the TOI global quality of life score, 0 and 28 for the physical and functional well-being subscales and 0 and 76 for the brain-specific additional concerns subscale, with higher scores indicating better quality of life. Statistical analysis All data were de-identified prior to being entered into Microsoft Office Excel version 14.3.1 (Redmond, WA 2011), and analyses were conducted in SPSS v. 21.0 (IBM Corp, 2012) and Stata v. 13 (StataCorp, 2013). Missing data comprised less than 5 % of the sample and were therefore determined to be missing completely at random [27], with no replacement methods used. Assumptions relevant to parametric modelling were tested and confirmed. Nominal variables were collapsed into dummy variables where appropriate

(e.g. caregiver relationship with the patient), and all continuous variables were centred to allow inclusion in the regression analyses. Independent sample t tests and chi-squared tests were used to test for significant differences (p

Predicting distress among people who care for patients living longer with high-grade malignant glioma.

Caregivers of patients living longer with high-grade malignant glioma (HGG) have the unique challenge of caring for a person who may have cognitive im...
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