Nonpain Symptoms of New and Follow-up Cancer Patients Attending a Palliative Care Outpatient Clinic in Saudi Arabia.

BACKGROUND: Epidemiology of cancer-related nonpain symptoms receives less attention in literature as compared with cancer pain.
OBJECTIVE: This paper aims at exploring the prevalence and severity of nonpain symptoms in cancer patients attending a palliative care (PC) outpatient clinic.
MATERIALS AND METHODS: Over a 5 months period, consecutive adult cancer patients attending PC outpatient clinic at a tertiary hospital were evaluated for the presence and severity of 10 nonpain symptoms. Patients were grouped to new or follow-up cases and were also grouped according to performance status and cancer type. Prevalence and severity of symptoms were compared between groups using t test or analysis of variance as appropriate.
RESULTS: Fifty-one males and 73 females were interviewed. The most common cancer is female breast (27.4%) followed by head and neck (15.3%). Majority of patients (67%) were new to PC clinic. Patients had 5.1 nonpain symptoms on average, with most common symptoms being tiredness (79.8%), loss of appetite (71.8%), dry mouth (69.4%), anxiety (60.5%), and depression (50.8%). The least common symptoms were confusion and nausea (22.6% each). The median scores of severity were highest for tiredness, loss of appetite, dry mouth, and insomnia (5 points each). Symptoms were fewer among patients with good performance status (P = 0.002), whereas age, gender, cancer type, and encounter type were not associated with difference in symptom prevalence. Younger patients, females and those with poor performance status have shown a tendency toward higher severity scores for several symptoms.
CONCLUSION: The significant prevalence and severity of nonpain symptoms among new and follow-up cancer patients seen in a PC outpatient clinic emphasizes the need for comprehensive assessment and routinely audited symptom management plans.

INTRODUCTION

Saudi Arabia (SA) is a large country with an area of about 2.2 million square kilometers and total population exceeding 27 million, of which 69% are Saudis.[1] Less than one quarter of cancer patients in SA present with localized disease. Indeed, most cancer patients present with advanced disease with regional or distant extension. The crude and age standardized cancer incidence rates in 2007 were 52.3 and 82.1 per 100,000 populations, respectively. The five most common cancers, in descending order, are colorectal, non-Hodgkin lymphoma, leukemia, lung, and liver in males; and breast, thyroid, colorectal, non-Hodgkin lymphoma, and leukemia in females.[2] The palliative care (PC) program at King Faisal Specialist Hospital and Research Center (KFSHRC), Riyadh, was established more than 20 years ago as the first program of its kind in the country. The program delivers services for inpatients, outpatients, as well as for those at home through a home health care service. The program has also established a structured postgraduate fellowship for physicians pursuing subspecialty in palliative medicine.

Awareness of symptomatology pattern in cancer patients enables health care professionals to place appropriate emphasis on various challenges in a prioritized manner. Prioritization process may include patient care plans, professional education plans, and the needs of health care services.[3] Furthermore, the quality of life of patients with advanced cancer could be significantly improved if specialized palliative care teams were involved in addressing the variety of symptoms that are common among these patients.[45] Therefore, impeccable identification and management of symptoms are two crucial aspects of palliative care.[6]

A recent report from 11 European countries suggests that there are variations between countries in the number of inadequately treated cancer-related symptoms.[7] To the best of our knowledge, no previous report has described the prevalence and severity of nonpain symptomatology among patients with advanced cancer in Saudi Arabia (SA). This paper aims at determining the prevalence and severity of 10 nonpain symptoms in cancer patients visiting the PC outpatient clinic at KFSHRC, Riyadh, SA.

MATERIALS AND METHODS

This is a cross-sectional survey exploring the pattern of 10 common nonpain symptoms in an outpatient palliative care clinic. The Research Advisory Council (RAC) of KFSHRC have approved the research project (RAC number 2101053) based on the approval of the research ethics committee. Informed consent was obtained from each participant. Adult cancer patients who were oriented to person, place, and time were consecutively included in the study. The study continued for 5 months ending on March 1, 2011. The 10 nonpain symptoms included tiredness, nausea/vomiting, anxiety, depression, shortness of breath, drowsiness, insomnia, dry mouth, loss of appetite, and confusion. The intensity of each symptom at the time of the encounter in the clinic was determined by each patient based on a 0–10 numerical scoring system where zero means the absence of respective symptom and 10 means the greatest severity a person could possibly imagine. The performance status was determined using the Palliative Performance Scale (PPS), which is a reliable and valid observer-rated tool for measuring performance status in PC patients.[8] The PPS consists of five domains (on a scale of 0%–100%, with increments of 10%), namely ambulation, self-care, activity level/evidence of disease, intake, and conscious level.

All interviews were conducted by one of the authors (OA) to avoid the potential of inter-rater variability. Data analysis was conducted using the software package SAS version 9.2 (Statistical Analysis System, SAS Institute Inc., Cary, NC, USA). Descriptive data were presented as frequencies and percentages. Means were presented ± one Standard Deviation (SD). The Student's t test for independent samples was used to compare means between two groups, such as those related to gender, age group, encounter type, and performance status. One-way analysis of variance was used for comparing the means among more than two groups such as in the case of grouping according to cancer type. A value of P less than 0.05 was considered significant.

RESULTS

None of the approached patients refused to participate. A total of 124 patients were interviewed, with a median age of 56 years and dominance of female gender (59%). One third of the patients were seen on follow-up basis and the rest were new to the palliative care outpatient clinic. All patients had advanced incurable cancer, with the majority (102; 82.3%) diagnosed with metastatic disease. For patients who were still receiving anticancer treatment, the intent of treatment was merely palliative. The most frequently encountered cancer types were female breast (27.4%), head and neck (15.3%), and genitourinary (12.9%). The median PPS was 70%. Table 1 shows more details of patients’ characteristics.

Table 1

Demographics

Only one patient denied any nonpain symptom while all other patients had from 1 to 10 nonpain symptoms per patient, with a mean number of symptoms of 5.1 ± 2.2. The majority of patients (93; 75%) had more than 3 nonpain symptoms each. The mean number of symptoms was higher in patients with PPS of less than 70% (5.9 ± 1.9) as compared with those who had better performance status (4.6 ± 2.3) (P = 0.002). However, the mean number of symptoms did not show any statistically significant difference between groups of patients based on age, gender, cancer type, or the type of outpatient encounter.

The most frequently reported symptoms were tiredness (79.8%), loss of appetite (71.8%), dry mouth (69.4%), and anxiety (60.5%), whereas the least prevalent symptoms were nausea and confusion (22.6% each) [Table 2]. For symptomatic patients, the mean severity scores were highest for tiredness (5.1) and loss of appetite (5) and lowest for nausea and confusion (3.4 each) as shown in Table 2. Older patients (above the median age, 56 years) had lower mean anxiety score compared with younger patients, 1.9 and 3.2, respectively (P = 0.003). Females had higher mean severity scores than males in 4 symptoms, namely, tiredness (4.6 vs 3.5; P = 0.04), nausea/vomiting (1.0 vs 0.4; P = 0.02), anxiety (3.2 vs 1.7; P = 0.001), and loss of appetite (4.2 vs 2.7; P = 0.003). Patients with lower PPS tended to have significantly higher severity scores for tiredness, shortness of breath, drowsiness, dry mouth, and loss of appetite, see Table 2. The mean severity scores of symptoms did not significantly differ between patients according to their cancer type or the nature of outpatient visit (new vs follow-up). However, when patients with primary or secondary lung or pleural disease were pooled in one group, they had higher mean severity scores of shortness of breath compared with other patients, 2.4 and 1.2, respectively (P = 0.01).

Table 2

Symptom prevalence and severity

DISCUSSION

The participation of all approached patients in our study was not unexpected because the questions were all focused on the presence and severity of symptoms known to be fairly common among cancer patients. The median age of our study population agrees with the findings of a previous report on a larger group of advanced cancer patients in SA and appears generally younger than the median age of the palliative care population in Western countries.[9-11] This might be explained by the fact that more than 97% of the Saudi population represents those younger than 65 years.[12] The finding that metastatic or locally advanced disease is the rule in the studied population may be explained by the trend of delayed diagnosis of cancer in SA as well as the common practice of delayed referrals to palliative care in KFSHRC.[913]

Symptom prevalence studies on patients with advanced cancer have mostly targeted inpatients rather than outpatients.[3] Furthermore, most reports have major variations in demographics of surveyed populations and in methodologies implemented, which obviously make comparisons between the findings of various reports less meaningful. That being said, our findings have shown higher prevalence of nonpain symptoms among patients with advanced cancer compared with what other researchers have reported. For instance, Grond and colleagues have reported that cancer patients attending an outpatient pain clinic were having on average 3.3 nonpain symptoms the most prevalent of which were insomnia (59%) and loss of appetite (48%).[14] According to several reports, it seems that the more symptoms are actively assessed the more symptoms will likely be reported.[15-17]

Similar to our results, there is a common finding among various reports that tiredness (also reported as fatigue or weakness in some studies) is often on the top of the list of prevalent nonpain symptoms among patients with advanced cancer.[16-20] Potter and coauthors have reported nonpain symptoms in patients seen at an outpatient PC clinic in the UK, with the most prevalent symptoms being tiredness and nausea (18% each) and loss of appetite (17%).[18] A recent report from Lebanon has shown high prevalence of fatigue (88.4%), dyspnea (65.1%), depression (53.5%), and confusion (37.2%) among inpatients with advanced cancer.[19] Alshemmari et al. from Kuwait have studied cancer patients who were largely having advanced incurable disease and found the most common nonpain symptoms to be fatigue (80%), anorexia (67%), weight loss (49%), and dyspnea (42%).[16]

Overall, the severity of symptoms reported by our patients was generally more than what has been reported elsewhere on a group of cancer patients hospitalized for palliative reasons.[10] Our findings have supported previous reports suggesting that poorer performance status may be associated with higher symptom burden.[1721] In addition, we have found that some symptoms might be associated with higher severity scores in patients with poor performance status. Contrary to what Walsh et al. have found, our data failed to show an association between symptom prevalence and age or gender of patients.[17] However, younger patients in our study had higher severity scores of anxiety than older patients. Also, females reported higher severity scores as compared with males in few symptoms including anxiety. Our finding that patients with primary or secondary lung or pleural cancer were having severe shortness of breath supports what has been suggested by Kirkova et al. that some symptoms may vary in prevalence or severity (or both) based on cancer site.[20]

In the PC outpatient clinic at KFSHRC, it is common for patients’ relatives to attend follow-up clinics on behalf of patients for the sake of medication refill, hence the lower proportion of follow-up patients as compared with new patients in our study. The reasons for this pattern of family visits have not yet been investigated. However, one reason could be the fact that many patients reside outside Riyadh and, like most Saudis, have widely extended families with good chances of having relatives living in Riyadh who would be happy to visit the clinic on behalf of the patients. Although air fares for health care-related travel are usually covered by the government, some patients may find it difficult to attend the clinic in person due to poor performance status. However, we are under the impression that a good number of patients who prefer to send relatives to attend the clinic on their behalf might be having symptoms that are fairly controlled. This could partially explain the high prevalence and severity of symptom burden in our sample as well as the finding that symptom prevalence and severity in our study was similar in patients new to the PC clinic and those returning to the clinic for follow-up.

Limitations of our study include the relatively small number of participants and the cross-sectional nature of the study design. A longitudinal design with sequential assessments of a larger group of patients from different centers could have generated more generalizable data. The list of 10 nonpain symptoms studied in this paper is far from comprehensive. A much longer list of nonpain symptoms could have been better representatives of symptom burden among this group of patients. The single-institutional nature is another limiting factor in our study. Future multicenter research on the same lines may be focused on longitudinally assessing symptom burden in such patients, with emphasis on exploring the efficiency and effectiveness of symptom management strategies in PC outpatient settings.

CONCLUSION

Despite the wide variation in reports that explored symptom pattern and prevalence in patients with advanced cancer, it is clear that they all agree upon the fact that patients with advanced cancer are polysymptomatic. The significant prevalence and severity of nonpain symptoms among new and follow-up cancer patients seen in a PC outpatient clinic emphasizes the need for comprehensive assessment and routinely audited symptom management plans.