This study aimed to investigate the prevalence of clinical cases of HRQoL, as assessed by the EORTC QLQ-C30 core questionnaire, and its association with socio-demographic and clinical factors among patients attending specialized cancer care in Uganda. The results show that significant proportions rate poor Global health status /QoL impaired functioning and high symptom burden to an extent that merits concern. We identified some socio-demographic (higher age and lack of education) and clinical (advanced disease stage, being inpatient, receiving palliation, not receiving active cancer treatment, diagnosed with head and neck cancers) factors associated with low HRQoL (clinical case).
Regarding clinical characteristics, the results of the study showed that the majority of the study participants were inpatients and this group had a higher risk of clinical caseness in the Role Function scale compared to the outpatients. This probably reflects that the patients who were hospitalised could not perform their daily work or other activities.
One of our results was somewhat surprising; patients with late-stage cancers were less likely to be clinical cases in the Social Functioning scale. This may be explained by the fact that in Africa, late stage of a disease is usually accompanied by strong support from the family, friends, spiritual and cultural leaders to help patients cope. The strong social support highlights the need for culturally appropriate, patient centred approach for patients with advanced cancers that would determine their preferences and needs of end-of-life care (25). There is need to strengthen palliative care infrastructures at health care services providing cancer care.
The results show that receiving palliation was associated with being a clinical case with regard to Emotional Function, Social Function and Fatigue. Additionally, our results reveal a higher risk of clinical caseness among patients who did not receive active cancer treatment in relation to Global health status / QoL and Emotional Function. This means that patients who did not receive any form of the active cancer treatment(s) were more likely to be clinical cases in the Global health status / QoL and Emotional function scales than those who received some treatment.
Our findings regarding poor HRQoL are comparable to studies performed in Iran and Ethiopia that evaluated HRQoL of adult patients with cancer receiving treatment (26, 27).
The large proportion of clinical cases may be attributed to a number of factors, such as, poor psychosocial support, poverty, lack of knowledge about cancer together with lengthy cancer experiences (26, 28, 29), inadequate relevant resources (nurses, doctors, cancer medicines and other supplies) (30, 31). Psychosocial counselling and support may play an important role in improving HRQoL in patients with cancer in Sub-Saharan Africa.
Our results revealed that the majority of patients experienced a great deal of pain and fatigue. Cancer-related pain is the most common debilitating and feared symptom (32) and it’s prevalence is more than 70% (80% in our study)among patients with advanced cancer in low-income countries (32). This can be explained by inadequate education of healthcare professionals (insufficient knowledge and poor understanding regarding the use of analgesics), limited facilities for pain management, fear of the side effects, misconception about pain drugs (addiction) and poor access to pain drugs (32).
The National Comprehensive cancer Network (NCCN) guidelines for adult cancer pain management suggest goals to optimize pain management outcomes in five dimensions (5As), including; Analgesia (optimise pain relief), Activities (optimize activities of daily living – the psychosocial function), Adverse effects (minimize adverse effects), Aberrant drug taking (avoid addiction - related outcomes) and Affect – the relationship between pain and mood (33). Additionally, the guidelines detail the sequential management decisions and interventions and recommend all care providers to consider pain assessment using the three (3) pain levels (algorithm); (1 – 3), (4 – 7) and (8 – 10) for mild, moderate and severe pain respectively. It is important to relieve pain to improve treatment outcomes; however, this requires knowledge about the pathogenesis of cancer pain, pain assessment techniques, and common barriers to delivery of appropriate analgesia (33, 34). It is therefore equally important to build capacity of all professional cancer healthcare workers to help patients to better understand cancer treatment(s), their side-effects and pain management.
The use of opioids, especially morphine, has been widely adopted and has led to satisfactory pain relief in significant proportion of patients in practice, although it is associated with side effects and complications which may exacerbate their pain symptom (32, 35).The multiple factors associated with cancer pain management need to be addressed to improve cancer care. Awareness among patients and communities regarding cancer treatment regimens, their side effects and how to manage the related pain are important in addition to policy regarding pain management.
Cancer-related fatigue is a another symptom commonly experienced by patients during and after active cancer treatment (36). Being fatigued has deleterious effects on HRQoL and is not adequately addressed by healthcare providers (36). Patients with fatigue are more likely to have greater financial stress, higher utilisation of healthcare services and are associated with higher mortality. Currently, there is no gold standard for management of cancer-related fatigue (36, 37). Exercise training is reported to be safe and well tolerated during and after cancer treatment and has shown to improve physical fitness and QoL (37). Interventions recommended to reduce fatigue include; at least 150 minutes per week of aerobic activity, two or more days of resistance training, and daily stretching of major muscles, based on patients’ health status and treatment. Basically, patients should be encouraged to avoid inactivity and be as physically active as possible. Management of fatigue might be facilitated by nurses and doctors through teaching patients and the public the recommended interventions (37).
Our findings also showed that clinical caseness was generally higher with increasing age and among patients with low or no education, which is in line with research on population-based samples (38-40). This may be explained by the fact that literate and well educated patients have the capacity and resources to access care (4, 41, 42). Poor healthcare-seeking behaviour, advanced stage at presentation, dearth of treatment choices and poor treatment compliance are known to be related to low level of or no education (4, 13, 43).
This is the first study conducted in Uganda to investigate HRQoL of adult patients with cancer and to identify socio-demographic and clinical factors associated with HRQoL. A large sample comprising adult men and women, cared for at a local hospital, with both in- and outpatients, was included in the study. The use of predetermined thresholds of clinical importance of the EORTC QLQ-C30 scale scores enabled the study to identify and categorise patients who exhibited a clinically important symptom or functional impairments. There are a few limitations to be considered in the study. The cross-sectional design of the study did not allow follow-up of patients hence causal inferences could not be made between HRQOL and the independent variables. Also, despite an overall large sample, some of the subsamples were relatively small.