The quality of life of the patients with cancer on chemotherapy and radiotherapy treatment requires constant attention of the multidisciplinary team. This attention needs to include the informal caregiver that was chosen by the patient and his family. Although there is a high number of researches on patient’s quality of life, few studies have been done to access the impact of the disease in the caregivers of patients with gastrointestinal cancer. These patients had, in addition to the common side effects of the chemotherapy, some specific requirements as the preparation of the diet by nasoenteral tube, difficulty of digestion after gastrointestinalresection or the care of colostomy 9.
The caregivers included, as already described in other studies, are youngers, females, and daughters of the patients9,10,11,12 We also found that the caregivers had a higher schooling level that is remarkably important suggesting that these subjects had a better condition to understand the medical instructions and follow the treatment of the cancer patients.
Wieldraaijer et al., described that most of the patients were retired and lived with a relative. Almost 70% had a comorbidity being most frequently cardiovascular disease (45%), arthrosis (16%) or diabetes (15%)13. In our study most of the patients also lived with a relative and had a similar percentual of comorbidities.
Emotional role, physically role and vitality were the 3 dimensions most affected in the SF 36 with an index less than 50 considered the cut off by some authors. The best score was found on functional activity (80.9) and mental health (61). Santo et al., found similar results for these domains, a mean score of 83 for functional capacity and 61.3 for mental health (14)
The domain emotional role had the worst index of quality of life. Take care of a patient with cancer cause anxiety symptoms. Some authors have reported a higher intensity of anxiety among the caregivers done due to the perception of cancer diagnosis and cancer progression,10,11,14
Depression had been associated with some life aspects of the caregivers as gender, time spent with the caregivers, quality of sleeping, social and financial support, time spent with the caregiving and the presence of chronic disease. These aspects had been studied among caregivers of chronic disease15 .
Caregivers of females had a worst quality of life. The women are commonly the ones that take care of the routine of the house. In their absence, caregivers must assume this activity. We did not find a correlation between emotional role of the caregivers and age. Litzelman et al., described that caregivers of elderly patients are frequently older, but generally had a good performance16.
We did not find a worst emotional role compared to the stage or ECOG, probably because most of the patients had ECOG 0–1. Our patients were able to perform their daily activities and have not weakness that could limit mobility. Another explanation is that caregivers also believed that they had to satisfy the patient at the expense of their own needs.12,13,14 According to the clinical stage, another Brazilian study did not find a higher emotional distress in caregivers of lung cancer patients compared to the clinical stage and believed that these finds might be related to the tendency of caregivers to underestimate their perception of anxiety17. These authors described a worsening in quality of life of the caregivers in all domains of the SF-36 in patients with poor quality of life 17
Involving the informal caregivers as a member of the treatment team it is important to optimize the health of the patients. The health of the patient can improve when the caregiver has a better quality of life.14
This domain of vitality was most affected in caregivers of females, not married and patients with lower school level. Caregivers of females and patients that had not a partner had probably an increase of routine activities and patients with lower scholarity needs more attention to understand and adhere to treatment. Vrettos et al., described a lower score in married caregivers that were mainly spouses which live in the same house of the patient18.
We observed that caregivers with more than 60 years had worse quality of life by SF-36 in the domain of general health independent of the age of the patient. Most of these caregivers take care of ageing patients and both had physical weakness and a higher index of comorbidities.
The burden level of most of our caregivers by the CBS was less than 20, probably because most of the patients is on adjuvant treatment, had stage II or III disease and ECOG 0–1. The mean level of general strain was 20, but some of them had a higher index (average 10–31). Tiredness due to the increase of responsibilities, to the time spent with the patient and to the loss of time for himself on entertainment or in the treatment of their own health may cause an increase burden level of the general strain. These aspects can also increase the level of disappointment, that was the second cause of higher burden although only some caregivers had an index of 20.
Caregivers of children with cancer, published by Santo et al., 2011 also identified a higher burden in the domains of disappointment and general strain. The authors report that a great emotional, physical, and financial burden can affects the caregivers.14 We did not find an emotional burden among the caregivers.
Elderly caregivers had a higher level of burden in disappointment, that can be explained by the fact that ageing subjects become more emotionally involved when taking care of patients with cancer. 19
Our study has some limitations because it involves a small number of patients with different tumors in the digestive system and in different clinical stages in a single research center. In addition, the study was carried out in a public Hospital, where patients had a low income that probably cause a higher impact on quality of life. The higher burden of the caregivers was not compared to the income of the patients.
Despite the limitations, our results showed the fundamental importance of taking care not only of the cancer patient in the gastrointestinal tract, but also of the informal caregiver.
The knowledge of the caregiver’s quality of life and burden during the treatment of cancer patients at any stage or ECOG are very important20 Support for caregivers by the multidisciplinary team (social worker, nursing, and psychology) could contribute to a better quality of life for patients and caregivers.