Support Care Cancer (2014) 22:2775–2782 DOI 10.1007/s00520-014-2257-5
ORIGINAL ARTICLE
Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care Heide Götze & Elmar Brähler & Lutz Gansera & Nina Polze & Norbert Köhler
Received: 22 October 2013 / Accepted: 16 April 2014 / Published online: 9 May 2014 # Springer-Verlag Berlin Heidelberg 2014
Abstract Purpose Palliative patients and their family caregivers were interviewed at the beginning of home care in personal interviews at home in regard to their psychological distress as well as their quality of life. Methods Quality of life was collected with the palliative module EORTC QLQ-C15-PAL (patients) and the Short Form-8 Health Survey (caregivers). The psychological distress was assessed using the Hospital Anxiety and Depression Scale, the extent of social support with the Oslo 3-items social support scale. Two multiple regression models were employed to examine factors associated with psychological distress. Data from 106 palliative patients (39.6 % female) and their family caregivers (67.9 % female) were included in the analysis. Results Every fourth patient had clinically relevant anxiety levels and half of the palliative patients had clinically symptomatic depression scores. The main symptoms of the patients were: fatigue, loss of appetite, pain, and shortness of breath. Patients’ and caregivers’ anxiety and depression scores were significantly correlated (anxiety r=0.386, depression r= 0.416). Thirty-three percent of caregivers suffered from high
anxiety and 28 % from depression. Spousal caregivers had higher psychological distress than other caregivers. Other relevant factors for higher distress were high financial burden and low social support. There was hardly any family member receiving professional psychological support. Conclusions In palliative patients, depressive symptoms should not be judged as a normal attendant of the terminal illness situation. Instead, patients should be referred to appropriate support services for pharmacological or psychological treatment. Spousal caregivers and caregivers who are socially not well integrated are in particular need of support. Attention to the financial burden of family caregivers is also very important. Due to the existing correlation between the psychological situation of palliative patients and their caring relatives, couples must be considered an emotional system rather than just two individuals. Keywords Palliative patient . Cancer . Family caregiver . Psychological distress . Quality of life . Home care
Introduction H. Götze (*) : E. Brähler : N. Köhler Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103 Leipzig, Germany e-mail:
[email protected] L. Gansera Clinic and Policlinic of Psychiatry and Psychotherapy, University Hospital Leipzig, Semmelweisstr. 10, 04103 Leipzig, Germany N. Polze Palliative Ward, University Hospital Leipzig, Semmelweisstr. 14, 04103 Leipzig, Germany E. Brähler Department of Psychosomatic Medicine and Psychotherapy Universal Medical Center Mainz, Untere Zahlbacher Str. 8, 55131 Mainz, Germany
Palliative cancer patients Because of the expansion of medical knowledge and rapid innovations in treatment technologies, healthcare systems are faced with growing needs and demands of an aging population. Since people live increasingly longer with chronic illnesses and life-limiting conditions, the number of cancer patients and family caregivers is on the rise [11]. For a certain number of patients, the focus of treatment shifts from cure to care. Symptom control is an essential part of palliative care. A review of Gilbertson-White et al. on multiple symptoms in patients with advanced cancer showed that palliative patients suffer from diverse and often severe symptoms [9]. A systematic review and meta-analysis about the prevalence of
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symptoms in palliative cancer patients identified fatigue, weakness, pain, and anxiety as the most severe symptoms [35]. Further frequent symptoms are lack of appetite, shortness of breath, constipation, and nausea. Previous studies on palliative cancer patients’ quality of life have found that it is almost always low regardless of the type of cancer [9, 33]. Shorter time of survival was correlated to decreased quality of life [21]. Risk factors for a reduced quality of life are poor physical condition (primarily pain), worries about being dependent on and burdening others, and dissatisfaction with social support [1]. Cancer patients in pain develop psychological symptoms (39 %) twice as often as patients who are not in pain (19 %) [30]. Family caregivers In the last few decades, cancer care has shifted from the hospital inpatient setting to ambulatory settings [36]. A study which evaluated the care experience at home and in institutional settings indicated that family members of patients with home care reported higher satisfaction with overall quality of care than caregivers whose relative passed away in an institutional setting [34]. Nevertheless, caring for a family member is both a physical and a psychological strain. The necessity of homecare often arises unexpectedly and, at the outset, it is often difficult to accurately assess the quantitative and qualitative dimensions (intensity and length of care, etc.) it will require. Compared to cancer caregiving in curative settings, family caregivers of patients receiving palliative care had significantly lower quality of life and lower physical health [38]. Studies have indicated that the levels of psychological distress among family caregivers are equal to, or sometimes even greater than those of the patients [27]. The role family members play in caring for cancer patients and how they are affected on many levels by the experience has been documented in several studies [7, 29]. In a previous research, the following risk factors for increased emotional distress of family caregivers could be identified: female gender [10, 17, 27], older age [23], and quality of couple’s relationship [8]. Research about the effects of gender suggested that male caregivers are more likely to perceive their cancer caregiving experience as beneficial and that female caregivers are more likely to perceive their cancer caregiving experience as stressful [17]. These effects were independent of the caregiver’s age, marital and employment status, and social support. When cancer patients reach the point of needing palliative care, the situation can result in an accumulation of burdens on the patient’s family—especially in the home care setting. Caregivers often reach their own physical and psychological limits and feel overwhelmed when the patient’s symptoms worsen. In addition to coping with a myriad of limitations imposed on their everyday routine, people commonly also suffer professionally and financially as a result of becoming
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a caregiver [26]. Their role in the family as a whole can change as well [19]. The most frequent psychological disturbances that develop in cancer patients and their family caregivers are adjustment disorders and depression [2, 7]. Aim of the study Although it is increasingly common for patients to be cared for by relatives at home, to date, there has been a lack of knowledge about the prevalence of anxiety and depression of cancer patients in home-based palliative care and their family caregivers. Comparable information about influencing factors of cancer patients’ and caregivers’ mental health remains sparse [15]. Therefore, the first aim of this study was to examine the level of psychological distress and the quality of life of palliative cancer patients and their family caregivers. The second aim was to investigate the impact of sociodemographic and care-related factors on psychological distress of palliative patients and their family caregivers. Our work centered on the following questions: 1. How psychologically distressed are palliative cancer patients being cared for at home and their family caregivers? 2. What is the health-related quality of life of palliative cancer patients and their family caregivers? 3. How much social support do family caregivers and palliative patients in home care have? 4. Which factors are associated with psychological distress of palliative patients and their family caregivers?
Methods Design As part of a project funded by the German Cancer Aid, palliative patients and their family caregivers were interviewed at the beginning of home care in personal interviews at home about their psychological distress as well as their quality of life. In the study, the term “palliative disease situation” was defined as follows: incurable, progressive, and advanced cancer with life expectancy of about 6 months. The survey period was from March 2011 through January 2013. Study participants Patients were recruited from the palliative ward at the University Hospital Leipzig and the two specialized outpatient palliative care teams (SAPV) in Leipzig. Patients who took part in the study met the following inclusion criteria: (1) palliative cancer disease (progressive cancer disease without curative treatment approach, life expectancy
