|Ahead of print
Quality of life and burden in family caregivers of patients with advanced cancer receiving specialized palliative care
Nesteren Kocak1, Gülçin Şenel1, Gonca Oğuz1, Şerife Karaca1, Fatih Göksel2
1 Department of Anesthesiology, Palliative Care Unit, Dr. AY Ankara Oncology Training and Research Hospital, Ankara, Turkey
2 Department of Radiation Oncology, University of Health Sciences, Dr. AY Ankara Oncology Training and Research Hospital, Ankara, Turkey
|Date of Submission||25-Jul-2019|
|Date of Decision||22-Jul-2020|
|Date of Acceptance||17-Jul-2020|
|Date of Web Publication||27-Jan-2021|
Department of Anesthesiology, Palliative Care Unit, Dr. AY Ankara Oncology Training and Research Hospital, Ankara
Source of Support: None, Conflict of Interest: None
Background: The caregivers of advanced cancer patients face many physical, psychological, social, and economic problems. In this study, the quality of life and burden in the primary family caregiver of patients with advanced cancer receiving inpatient palliative care were investigated.
Methods: A total of 200 patients with advanced cancer hospitalized at palliative care center and primary caregivers were included. Functional capacities of patients were evaluated with Karnofsky Performance Scale and need of care with Katz index. The Turkish version of World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF TR) was used to assess the quality of life of caregivers.
Results: The median Karnofsky Performance score of patients was found to be 30% and Katz Index score to be 2. The mean WHOQOL-BREF TR domain scores of family caregivers were 48.96 (Standard deviation (SD) =12.67) for physical health, 59.21 (SD=14.09) for psychological status, 56.83 (SD=20.91) for social relations, and 55.67 (SD=14.13) for environmental domain. Scores of psychological and environmental subscales were lower in women caregivers. The environmental subscale showed a significant difference in terms of education. The score of social relations subscale of the care giving spouse was lower than caregiving children and siblings. The score of environmental subscale of caregivers with insufficient income was found to be lower than caregivers with sufficient income. Karnofsky Performance and Katz Index scores and subscales of WHOQOL-BREF TR did not reveal any significant relation.
Conclusion: This study showed that all subscales of quality of life are impaired in caregivers of advanced cancer patients, physical health being the most prominent.
Keywords: Cancer, caregiver, quality of lifeKey Message The caregivers of advanced cancer patients have to cope with many physical, social, and economic problems, which significantly influences their quality of life. A good quality palliative care is needed both for the cancer patients and caregivers.
|How to cite this URL:|
Kocak N, Şenel G, Oğuz G, Karaca &, Göksel F. Quality of life and burden in family caregivers of patients with advanced cancer receiving specialized palliative care. Indian J Cancer [Epub ahead of print] [cited 2021 Feb 26]. Available from: https://www.indianjcancer.com/preprintarticle.asp?id=308047
| » Introduction|| |
Cancer has devastating effects not only for the patient but also for the family and the close environment. The debilitating nature of advanced cancers and their treatments leads to severe impairment in daily living activities of patients and produces an inevitable need for care. In these patients, the limitation in functional capacity is also an important prognostic index. A decrease in life expectancy, loss of a loved one, and coping with approaching death impress even the strongest caregivers.
The characteristics of cancer patients and caregivers and other aspects of total care affect the care burden and the quality of life. Along with the limitations in the functional capacity of the patient, serious burden of symptoms and care requirements are encountered as important problems in terms of emotional, spiritual, and financial distress for both the patients and their families., As the dependency of the patient increases, the negative experiences of the caregiver also increase and this contributes to the burden of the caregiver., Members of family caregivers can experience conflicts in social roles, strain in marital and family relations, limitations in daily activities, and impairment in physical and psychological health.,
In palliative care focusing on quality of life, the patient and the family should be supported by a holistic approach. Patients receiving inpatient palliative care at the hospital usually have more complex and serious symptoms. This study aimed to investigate the care burden and the quality of life in primary family caregivers of patients with advanced cancer receiving inpatient palliative care at a palliative care center.
| » Methods|| |
With the approval of the hospital research committee, 207 advanced stage adult cancer patients hospitalized at the palliative care unit between January 2014–December 2016 and 207 primary family caregivers were prospectively included in this study. Based on the previous studies with the World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) in the literature,, sample size was determined as 180 for f = 0.25 and 1–β =0.80 and a total of 207 patients were allocated in case of possible dropouts from the study. The inclusion criteria of the study were being the primary family caregiver responsible for the care of the patient, age older than 18 years, literate, not having any diagnosis of cancer or any psychiatric disease, and giving informed consent. Informed consent was obtained from all individual participants included in the study. Demographic characteristics of patients and caregivers and the duration of care were recorded. The functional capacities of patients were evaluated by the Karnofsky Performance Scale and the need of care by Katz Index. The Turkish version of World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF TR) was used to measure the quality of life in caregivers. Seven caregivers and the seven patients they were caregiving were excluded from the study, as their responses to the questions in the WHOQOL-BREF TR scale were incomplete.
In the Karnofsky Performance Scale used to evaluate the functional capacity of patients, 100 points show the best functional proficiency, whereas 0 point shows death with no functional capacity. The Turkish validity and reliability study of the Katz Index evaluating daily living activities was performed in 2015. The Katz Index includes basic parameters of daily living activities such as bathing, dressing, toileting, transferring, continence, and feeding. If the patient can perform these parameters without supervision, direction, and personal assistance, the index is determined as 6 = independent, and if not, the index is 0 = dependent. The scoring of the Katz Index varies in the range of 0–6 points.
The validity and reliability study of the Turkish version of the WHOQOL-BREF was performed in 1999. The scale consists of 26 questions and measures physical, psychological, social, and environmental well-being. The contents of the five domains of the scale were as follows: Domain I: physical health domain (activities of daily living, dependence on medicinal substances and medical aids, energy and fatigue, mobility, pain and discomfort, sleep and rest, work capacity). Domain II: psychological domain (bodily image and appearance, negative feelings, memory, concentration). Domain III: social relationships domain (personal relations, social support, sexual life). Domain IV: environment domain (financial resources, physical safety and security, health and social care accessibility, home environment, participation in and opportunities for recreation/leisure activities, physical environment and transport). Domain V: national environment domain (social pressure). When the Turkish version (the 27th question is the national question) is used, the environmental domain is called environment-TR. The scale was evaluated according to the guideline developed by the World Health Organization (WHO). Scores for each domain were calculated separately as each domain independently expressed the QOL within its own content and low scores indicated a low quality of life.
Distribution of subscales of WHOQOL-BREF TR was evaluated with the Shapiro-Wilk test and normality charts. Values measured were given as mean ± standard deviation (mean ± SD) and median (range). All categorical variables were presented in numbers (%). WHOQOL-BREF TR values were compared with Mann–Whitney U or Kruskall–Wallis tests according to the demographic data of patients and caregivers. After the Kruskall–Wallis test, Mann–Whiney U test was performed with the Bonferroni correction when required. The relations between the subscales of WHOQOL-BREF TR and Karnofsky Performance and Katz Index scores were investigated with Spearman's correlation test. Level of statistical significance was accepted as P < 0.05.
IBM SPSS Statistics version 21.0 software for Windows (IBM Corp, Armonk, New York.) was used for statistical analyses and calculations.
| » Results|| |
Demographic characteristics of caregivers and patients are presented in [Table 1]. The results of caregivers' WHOQOL- BREF TR subscales are given in [Table 2].
|Table 1: Demographic characteristics of caregivers (n=200) and patients (n=200)|
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|Table 2: Caregivers' WHOQOL-BREF TR subscale quality of life results (n=200)|
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No statistically significant difference was observed between the scores of physical health, psychological, social relations, and environmental subscales of WHOQOL- BREF TR in terms of age groups, marital status, employment status, and duration of care of caregivers and the age and gender of the patients [Table 3]. Scores of psychological (P < 0.001) and environmental (P = 0.025) subscales were lower in women caregivers when compared to men. According to educational status, only the environmental subscale revealed a statistically significant difference (P = 0.004). Scores of the environmental subscale in caregivers who have completed primary/secondary school education were lower than the caregivers who have completed higher education. The score of the social relations subscale of the caregiving spouse was lower than the scores of caregiving children and siblings (P < 0.05). The environmental subscale of quality of life measurements in caregivers with insufficient income was lower when compared with caregivers with sufficient income (P = 0.007). In the first question of WHOQOL-BREF TR general health status, 57.5% (n = 115) of the patients rated their quality of life as neither poor nor bad, 13.5% (n = 27) poor and 8.5% (n = 17) very poor.
|Table 3: The results of WHOQOL-BREF TR scores of caregivers (n=200) in terms of caregiver and patient demographic characteristics|
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The comparison of patients' Karnofsky Performance and Katz Index scores with caregivers' level of quality of life measured by WHOQOL-BREF TR is shown in [Table 4]. Median values of patients' Karnofsky Performance and the Katz Index scores were 30% (10–70) and 2 (0–7), respectively. There was no significant relation between these Karnofsky Performance and Katz Index scores and the subscales of caregivers' WHOQOL-BREF TR scales [Table 4].
|Table 4: Comparison of patients' (n=200) Karnofsky Performance and Katz Index scores with caregivers' (n=200) level of quality of life measured by WHOQOL-BREF TR|
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| » Discussion|| |
As shown in this study, the family caregivers of patients with advanced cancer receiving palliative care have a considerable decrease in their quality of life. When the subscales of quality of life were analyzed, the most prominent decrease was in the domain of physical health. It is generally known that caregivers of cancer patients experience distress as a result of burden of care. At the terminal stage, the disease not only interrupts the life of the patient but also has serious effects on different aspects of the family members' life. The burden of care leads to many differences in the lives of caregivers in terms of physical, social, spiritual, and financial status., Serious physical symptoms such as fatigue, back pain, cardiac problems, high blood pressure, and arthritis have been reported in caregivers of cancer patients., The most important psychological effects of cancer on family caregivers are depression, anxiety, helplessness and fear of death of loved ones., The effects on financial status and spiritual health have also been reported.
Demographic characteristics of this study showed that 65% of caregivers were female, 55% were children caregiving to their parents, and 62% were unemployed. In accordance with many other cultural beliefs, caregiving is accepted as the task of females in our country. Also, females have a greater role in caregiving of the patients as the participation of them in working life is less than the male members of the family. This study showed that the decrease in the psychological and environmental subscales of quality of life was more prominent in females when compared to males. Twenty-six percent of the females rated their quality of lives as poor/very poor and only 17% as good/very good. Most studies have focused on female caregivers and found that they report higher levels of caregiving stress than male caregivers. Kim et al. have reported that female caregivers are more likely to perceive their cancer caregiving experience as stressful, which is particularly the case among adult daughters. When the caregiver spouse is female, burden of care increases along with the responsibility of children, housework, and financial concerns. They also receive inadequate support for the care of the patient. The quality of life is further affected by physical burdens, psychological influences, and social isolation in female caregivers.
In this study, the environmental subscale of quality of life was lower in the middle age group than the other age groups, although the difference was not significant. It was thought that social relations might be further affected in this age group because of familial and financial responsibilities. A previous study has reported that quality of life is low in caregivers, especially in the middle age group. We could not find a significant relationship between the age of caregivers and the physical quality of life. In a community-based study, it was shown that the burden of care increased the risk of mortality in the elderly spouse. The percentage of caregivers aged 65 years or older was low as 8% in our study; therefore this can be the reason for insignificance.
A large prospective study showed that the burden of care and stress was increased in female caregiver spouses, and the burden of care was related with coronary artery disease. The physical subscales of quality of life were found to be lower in caregiver spouses of the patients in this study. When the assistance of other family members to the primary caregiver was lacking, the environmental subscale of quality of life showed a nonsignificant decrease. The absence of support of other family members has especially been determined as a factor increasing social isolation.,
There was not any relationship between the decreased quality of life in caregivers and the performance status of patients and their need of care in our study. A poor performance score and a short prognosis is an expected outcome in patients with advanced cancer, especially with an indication of hospitalization for palliative care. The severe deterioration in performance is usually encountered in the last 6 months in patients with advanced cancer. In this study, the performance status of the patients was also very low. Decreased functional capacity has been previously shown to increase caregivers' burden of care., A majority of patients in this study had very poor performance and increased care demand, depending on being bed-bound. Therefore, this can be the reason why we could not show any significant relation between the patients' performances and caregivers' quality of life. The duration of care was longer than 6 months in half of the caregivers. No significant relation was observed between the duration of care and the burden of care. It was thought that duration has an independent devastating effect on the caregiver as a consequence of the nature of cancer.
WHO's definition of palliative care states that the burden of the caregiving family members should be decreased along with improving the quality of life of the patients. Families play an essential role in the care of patients with advanced cancer. It was determined that important health problems encountered in caregivers of cancer patients can be prevented by early identification of the physical and psychological burden of care and giving the necessary support. The good quality palliative care given to the cancer patient also increases the caregiver's quality of life by decreasing the stress of caring., The awareness and efforts of oncology and palliative care teams will improve the quality of life of both the patients and their caregivers. Thus, caregivers of today can be prevented from becoming patients of tomorrow.
This study was conducted with patients hospitalized in an inpatient palliative care unit of a comprehensive oncology center. This may be regarded as a limitation of the study as the results of a single-center may not be generalized to the whole community or reflect the cultural diversity of the country.
In Turkey, the wide-spread and rapidly developing services of palliative care should handle the problem by evaluating all aspects of caregivers' burden of care. Extensive researches are required as cultural factors are also highly effective in this domain. In the national organizations of palliative care, community-based social support should be planned after the determination of risk groups in terms of burden of care.
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Conflicts of interest
There are no conflicts of interest.
| » References|| |
Kim Y, Given BA. Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer 2008;112 (Suppl 11):2556-68.
Thompson GN, Chochinov HM, Wilson KG, McPherson CJ, Chary S, O'Shea FM, et al
. Prognostic acceptance and the well-being of patients receiving palliative care for cancer. J Clin Oncol 2009;27:5757-62.
Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA. Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 1999;86:577-88.
Romito F, Goldzweig G, Cormio C, Hagedoorn M, Anderson BL. Informal caregiving for cancer patients. Cancer 2013;119:160-9.
Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin 2001;51:213-31.
Siegel K, Ravies VH, Mor V, Houts P. The relationship of spousal caregiver burden to patient disease and treatment related conditions. Ann Oncol 1991;2:511-6.
Kurtz ME, Kurtz JC, Given CW, Given B. Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression: A longitudinal view. Soc Sci Med 1995;40:837-46.
Kim Y, Baker F, Spillers RL, Wellish DK. Psychological adjustment of cancer caregivers with multiple roles. Psychooncology 2006;15:795-804.
Weithzner MA, McMillan SC, Jacobsen PB. Family caregiver quality of life: Differences between curative and palliative cancer treatment setting. J Pain Symptom Manage 1999;17:418-28.
Eser E, Fidaner H, Fidaner C, Eser SY, Elbi H, Göker E. The psychometric properties of WHOQOL–100 and WHOQOL-BREF. 3P Derg 1999;7:23-40.?
Hacialioglu N, Ozer N, Yilmaz Karabulutlu E, Erdem N, Erci B. The quality of life of family caregivers of cancer patients in the east of Turkey. Eur J Oncol Nurs 2010;14:211-7.
Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncol 1984;2:187-93.
Arik G, Varan HD, Yavuz BB, Karabulut E, Kara O, Kilic MK, et al
. Validation of Katz index of independence in activities of daily living in Turkish older adults. Arch Gerontol Geriatr 2015;61:344-50.
Palos GR, Mendoza TR, Liao K-P, Anderson KO, Garcia-Gonzalez A, Hahn K, et al
. Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer. Cancer 2011;117:1070-9.
Halley WE, Lamonde LA, Han B, Narramor S, Schonwetter R. Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J 2001;15:1-18.
Northouse LL, Mood D, Emplin T, Mellon S, George T. Couples' patterns of adjustment to colon cancer. Soc Sci Med 2000;50:271-84.
Girgis A, Lambert S, Johnson C, Waller A, Currow D. Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. J Oncol Prac 2013;9:197-202.
Kulkarni P, Kulkarni P, Ghooi R, Bhatwadekar M, Thatte N, Anavkar V. Stress among cancer givers: The impact of nursing a relative with cancer. Indian J Palliat Care 2014;20:31-9.
] [Full text]
Gotze H, Brahler E, Gansera L, Polze N, Kohler N. Psychological distress and qualityof life of palliative cancer patients and their caring relatives during home care. Support Care Cancer 2014;22:2775-82.
De Korte-Verhoef MC, Pasman HR, Schweitzer BP, Francke AL, Onwuteaka-Philipsen BD, et al
. Burden for family carers at end of life; a mixed-method study of the perspectives of family carers and GPs. BMC Palliat Care 2014;13:16.
Longo CJ, Fithch M, Deber RB, Williams AP. Financial and family burden associated with cancer treatment in Ontorio, Canada. Support Care Cancer 2006;14:1077-85.
Rahnama M, Falahi Khoshknab M, Seyed Bagher Maddah S, Ahmadi F. Iranian cancer patient's perception of spirituality: A qualitative content analysis study. BMC Nurs 2012;11:19.
Kim Y, Baker F, Spillers RL. Cancer caregivers' quality of life: Effects of gender, relationship, and appraisal. J Pain Symptom Manage 2007;34:294-304.
Rösler-Schidlack B, Stummer H, Ostermann H. Health-related quality of life of family caregivers – evidence from Hesse. J Public Health 2011;19:269-80.
Schulz R, Beach SR. Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA 1999;282:2215-9.
Lee S. Colditz GA, Berkman LF, Kawachi I. Caregiving and risk of coronary heart disease in U.S. women: A prospective study. Am J Prev Med 2003;24:113-9.
Boyda KJ, Murray SA, Kendall M, Worth A, Bentond TF, Clausene H. Living with advanced heart failure: A prospective, community based study of patients and their carers. Eur J Heart Fail 2004;6:585-91.
Strang VR, Koop PM. Factors which influence coping: Home-based family caregiving of persons with advanced cancer. J Palliat Care 2003;19:107-14.
Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, et al
. Family caregiver burden results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 2004;170:1795-801.
Chochinov HM, Kristjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Burden to others and the terminally ill. J Pain Symptom Manage 2007;34:463-71.
Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J. Correlation between patient quality of life in palliative care and burden of their family caregivers: A prospective observational cohort study. BMC Palliat Care 2016;15:4.
Glajchen M. Physical well-being of oncology caregivers: An important quality of life domain. Semin Oncol Nurs 2012;28:226-35.
Kurtz ME, Kurtz JC, Given CW, Given B. A randomised, controlled trial of a patient/caregiver symptom control intervention: Effects on depressive symptomatology of caregivers of cancer patients. J Pain Symptom Manage 2005;30:112-22.
Emanuel EJ, Fairclough DL, Slutsmann J, Emanuel LL. Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Ann Intern Med 2000;132:451-9.
[Table 1], [Table 2], [Table 3], [Table 4]