Challenges Management of Patients with Oral Cancer and Its Impact on Oral health‑related quality of life in Resource-limited Settings

doi:10.21203/rs.3.rs-5234806/v1

Purpose

the purpose of the present study was to identify the challenges in the management of patients with OC in resource-limited settings, and to evaluate their quality of life in this area.

Material and methods

A cohort random study of Congolese participants was conducted using a clinical questionnaire and an Oral Health Impact Profile (OHIP)‑14 questionnaire between the OC patient and control groups. Predictor variable was the treatment method, clinical characteristics and the main outcome variable(s) were the challenges or quality of life. The Chi‑square test was used to compare the percentage of qualitatively dependent variables, independent sample t‑test and ANOVA to compare OHIP score. Statistical significance was set at 5%.

Results

Out of 457 patients, 66% were male, and 34% female.More than fifty percent of patients were unemployed. Observation therapy and traditional medicine were done in 29.8% and 25.4%. More than sixty percent of patients reported delays in initiating cancer treatment and 78% of participants could not inform other persons because of the conception of oral cancer diseases. The patients with OC were affected by the quality of life even with or without the treatment done.

Conclusion:

Challenges management of oral cancer in resource-limited settings result in several factors. This mostly are the result of the poor socioeconomic status of the patients and the conception of oral cancer diseases in the region. With or without treatment, the patients were affected in their quality of life.

Challenges

oral Cancer

quality of life

oral health

DRC

Cancer is a major cause of death throughout the world. (Bray et al. 2018)An increasing number of around 21 million new cases per year in 2030 globally has been estimated. Of those, 75 % will be in the developing world. (Stewart, 2014; Siegel et al.2015 ) Several reasons may explain the cancer epidemic in developing countries including improved life expectancy, infectious diseases, lifestyles, and industrialization with increasing pollution. (Jemal et al. 2012; World Health Organization, 2017) In addition, the healthcare systems in developing countries are ill-equipped and ill-prepared to deal with the cancer burden. Low health literacy within the population in developing countries leads to delayed presentation and treatment abandonment, and limited research on cancers also negatively affects cancer care. (Moten et al. 2014 ) Several factors may contribute to the challenges management of patients with OC in resource-limited. Those include the poor socioeconomic situation that patients may have to buy medicines, the limited number of surgical oncologists in the country.(Geoffrey et al. 2017; Kabukye et al. 2018)as well and patients cost-share for radiotherapy services of paying up to $5500USD before accessing the radiation cycles. From the literature, the authors found that 53 % of the families had to borrow money to pay for care, 21 % had to sell possessions, and 17 % lost a job as a result of the patient's hospitalization. (Geoffrey et al. 2017).

In the world, most cancer Centers or Institute services are provided free of charge for cancer including cancer screening, diagnosis, oncologist consultations; surgery; and all cancer medicines available.(Amos Deogratius Mwaka et al. 2016 ) However, in the DR Congo, in all of the public health service structures, there are no organized oral cancer screening programs and most cancer patients enter the care pathway by self-due to alarming symptoms. The infrastructure for cancer in general as well as for oral and pharyngeal cancer research or control is still unavailable. Additionally, the oral cavity is full of many important functions, including chewing, swallowing, and speaking. In oral tumors, the above functions may be destroyed during their removal, especially those of large sizes. ( Shavi et al. 2015 ) Patients can inevitably experience the side effects of treatment by losing certain vital functions such as taste sensation, swallowing, speech disorder, smell disorder, chewing disorder, and various pains that may affect the psychological, physical, and behavioural well-being thus disrupting their quality of life.(Rhée et al. 2007) As a result, patients may face enormous challenges along their cancer journey and delays in cancer care due to several factors including lack of knowledge and awareness about cancer signs and symptoms; poor access to health care, stigma about the cancer disease; and financial constraints. (Carolina Espina et al. 2017) It is well known that treatment side effects of oral cancer can affect patients' quality of life (QOL). However, the effects of observation therapy or palliation therapy on patients' quality of life are not well known. Quality of life assessment has become a valuable tool by which it examines the different functions of an important organ of any person or the side effects of any treatment.(Barkokebas et al. 2015) Hence, the aims of this study were (1) to identify the challenges in the management of patients with OC in resource-limited settings to generate strategies for mitigation of the identified challenges, and (2) to evaluate the quality of life of patients with OC treated in this area compared with the control group.

2.1. Study design and sample:

A cohort random study with a probabilistic sampling design of Congolese participants with and without oral cancer was conducted in the Department of Oral and Maxillofacial Surgery, Hospital of Kinshasa University, and that of H Plamed Clinical Center of the National Center Laboratory of Oral Biomedicine, Ministry of Research Innovation and Technology, DR. Congo from 2020 to 2023. All procedures were performed in compliance with relevant laws and institutional guidelines and have been approved by the Ethics Committee of the above National Center Laboratory (CNRSBD1504.217). Written informed consent was obtained from all participants before study participation.

2.2. Participants recruitment

A total of 1012 participants were invited to participate in the study. Of these, 827 agreed to participate (adhesion rate = 82 %). Patients with OC diagnosed histologically, treated at the same hospital, from which biological material was biopsied during surgery and stored, were included. Those participants who completed all items for the clinical questionnaire and measuring instruments (OHIP-14), with cognitive ability, and capacity to answer the OHIP-14 questionnaires were also included. Exclusion criteria were benign tumors or OC diagnosed at another hospital without detailed information. Participants with joint diseases (n=57), with psychiatric disturbance (n=6), data records without any detail for review (n=54), refused to participate in the study (n=37) and OC treated at other hospitals without evidence of histopathologic result (n=31) were excluded. After this applying exclusion criteria and providing informed consent, 827 participants were included in the study. They were randomly assigned into 2 groups for evaluating the quality of life. One group of patients with oral cancer (OCP group, n=459) than the healthy participant group (control group, n=368). Eligibility criteria for the control group included no psychiatric disturbance and no intellectual disability. The exclusion criteria were inability to meet the above requirements and refusal to participate in the study. To OCP group was assigned into two sub-groups to compare the quality of life between the group patients received the treatment (n=240) than those did not (n=219) (flow chart: figure 1).

2.3. Data collection and measurement

Participants were interviewed by well-trained doctors of Master's degree, using interview-administered questionnaires. The questionnaire was developed through an iterative collaborative process, among public health experts and researchers at the National Center Laboratory of Oral Biomedicine. The study questionnaire was piloted before the launch of the study and adjusted accordingly. The additional information was obtained from the patient’s medical records in the Pathology Department and from the computed tomography scan. The Oral Health-related Quality of Life (OHRQoL), was evaluated through the Persian version of the valid questionnaire OHIP‑14 .( Koocheki et al. 2019) The interviews were presential and the investigators read the questions to the patients for those were illiterate and the answers were applied themselves. The questionnaires were prepared in the French language and helped to conduct a face-to-face pilot interview with 17 patients. After a normality pretest, data were analyzed using Kolmogorov–Smirnov, Cronbach's α correlation coefficient, P > 0.05, indicating that the survey had normal distribution data. The results of the pilot study were not included in the present research. The questionnaire consists of 14 questions analyzed seven aspects of quality of life including functional limitation, physical pain, psychological discomfort, physical disability, psychological disability, social disability, and handicap. The 5-point Likert scale was used (Score 0 =means never, 1= rarely, 2 =occasionally, 3 =often, and 4 =always). ( Llewellyn et al. 2003) And finally, the overall OHRQoL per participant was represented by the sum of the outcomes of the individual questions. A higher score shows a lower OHRQoL.

2.4. Treatments

All forms of cancer treatment were considered including surgery, radiotherapy, chemotherapy, observation, traditional medicine, and palliation therapy, defined as supportive care and pain management.

2.5. Study variables

The study variables were age, gender, marital status, religion, occupation, education level, delays or not of the initial treatment, health information challenges, side-effects of cancer treatment, functional limitations, psychological discomfort, physical inability, and physical pain that were evaluated.

2.6. Statistical Analysis

Data was analyzed with SPSS software version 24 IBM Corporation, New York, USA. The Chi‑square test was used to compare the percentage of qualitatively dependent variables among the groups, independent sample t‑test to compare OHIP score for variables in two groups, and one‑way ANOVA for variables in more than two groups. Finally, a linear regression in three models to evaluate the mean OHIP score was used. Statistical significance was set at 5%.

3.1. Patient characteristics

The baseline data of 457 patients with oral and oropharyngeal cancer are detailed in Table 1 that 66% of patient were male, and 34% female. The mean age of the patients was 36.4 ±4 years. More than fifty patients were unemployed and self-supported, and more than half of the patients reported to have a primary education level were Christian. The education level and occupation of the participants variables were not equally distributed among the study cancer group than control group, creating unequal samples with statistically signiﬁcant differences. Observation therapy and traditional medicine were done in 29.8% and 25.4% respectively. Surgery alone or associated with chemotherapy was performed only in 21%.

3.2. Delays in treatment initiation and Side-effects of cancer treatment

Of regard about the questionnaire on delayed initiating cancer treatment (Table 2), 68% of patients reported delayed initiating cancer treatment, and 32% had delayed medical appointments after initiation of treatment. Mostly, the participants indicated vomiting (30%), weakness (26%); constipation (17%) followed by diarrhea and oral wounds. These side effects were mostly because of the poor economic situation that could not help the participants to buy the prescribed drug against side effects and associated eating.

3.3. Health information challenges

The health information challenges were detailed in figure 2. More than 72% of participants were not informed about the type of diseases even though 86% were comfortable asking questions about their diseases and treatment. In 78% of cases, it was only the family members of the patients were informed about the oral cancer and treatment strategy. In addition, 78% of participants could not inform the other person. Consequently, only 10% sought help from family members, and the remaining others attempted self-medicine treatment.

Of the 22% of participants that were informed about oral cancer, 89% of them refused to take a cancer treatment because the treatment is just spending money without any results and they thought that in a few days, they would die. Consequently, many participants (70%) were not told what to do before initiating treatment and lacked information on the length of the treatment schedule and how long they would come to the Department for treatment. Similarly, participants were often not informed about the side effects of the treatment and what to do in case of side effects. Of those who received this information, 69% got the information orally from medical health staff, and 31% received information in written form.

3.4. The Oral Health-related Quality of Life (OHRQoL)

The average OHIP score (Table 3) in patients was 29.18 ±15.44 (range: 7–58) and the control group was 16.48 ± 9.77 (range: 1–34). In terms of the relationship between the OCP group and the control group, the OHIP‑14 total score was higher in OCP group than the control group (P<0.005) regarding functional limitation, physical pain, psychological discomfort, and psychological disability. This means that the patients with OC are affected in their quality of life even though the treatment was not yet done. OHIP-14 average based on different types of treatment was detailed in Table 4. The surgery score alone or associated with chemotherapy was 12.00 ± 5.16, observation therapy was 29.88 ± 10.65, palliation therapy was 23.65 ±11.61, radiotherapy was 21.46±9.55 and traditional medicine OHIP-14 score was 30.64 ±9.86.

The management of oral cancer in resource-limited settings and oral health‑related quality of life (OHRQoL) is still challenging. The present study aimed to identify the challenges in the management of patients with OC in resource-limited settings to generate strategies for mitigation of, and to evaluate the quality of life of patients with OC in this area compared to the control group. The results of this study indicate that several challenges have been identified in the management of patients with OC and that OHRQoL in these patients are worse even with or without treatment. Observation therapy and traditional medicine were much managing (55.2%) with 29.8% and 25.4% respectively.

The 78% of participants could not inform the other person as the conception of oral cancer diseases seems to be secret for various families in Kinshasa city. More than 72% of participants were not informed about the type of disease.

Delayed initiating cancer treatment during their treatment journey may directly affect the outcomes of cancer treatment in this setting since adherence to cancer treatment is a key factor to the successful outcome of medical treatment. (Dimatteo, et al. 2002) More than sixty percent of patients reported delayed initiating cancer treatment. This situation is mostly due to the lack of money treatment, no family members for taking responsibility and because of the first-line treatment of traditional medicine taking. Additionally, the conception of cancer diseases in the region, thereby presenting a geographical accessibility challenge. Consequently, those patients as well as family members refuse the treatment because they are just spending money without any results and they thought that in a few days, the patient would die. More than 70% of Congolese live in multidimensional poverty, and the associated war situation in the country for more than 20 years has considerably contributed to the lack of treatment. The study of Annet et al 2021 in Uganda indicating that the lack of money for medicines ranked a highest among the reasons for delayed treatment or missed appointments. Although this could be partly explained by the socioeconomic status of the cancer patients in this population, RDC is the country that has not yet provided free treatment of cancer diseases even though the national cancer control program has been established. Research has shown that these out-of-pocket healthcare expenditures have further impoverished patients and their families. (Kwesiga et al. 2015 )

Another important finding was the challenge of inadequate health and cancer information for patients. The majority of the participants would not like to know about the type of cancer and treatment being given as was observed in Uganda country.(Annet et al 2021) The conception of OC is still challenges and secret for various families in Kinshasa city to fear any accident that could occur once the participants were informed of having an OC. It is well documented that cancer patients prefer to know as much information as possible about their disease. Such information provides opportunities for patient involvement in decision-making about their health and treatment. This leads to satisfaction with treatment choices and enhances adherence to cancer treatment. Additionally, it reduces patients’ anxiety, improving their experience and quality of life.(Squiers et al. 2005)

Communication capacity, ability to eat without help, aesthetics, or sexual life are priorities for the patient in treatment, and have an impact on their quality-of-life perception (Arslan et al.2016).The maintenance of these characteristics could help people to live with cancer. However, quality of life maintenance may be influenced by several factors including oncologist treatment as well as an observation therapy for advanced oral pharyngeal cancer. This later may alter basic and vital life functions, such as breathing, feeding, and oral communication.(Licitra et al..2015; Nyqvist et al. 2016) The quality of life in this study was very poor compared to the control group. In most aspects, observation therapy and traditional medicine had the highest OHIP-14 score, and surgery alone or with chemotherapy had the lowest OHIP-14 score. The reason for the high score of the observation therapy and traditional medicine can be attributed to the effect of advanced-stage diagnosis of oral pharyngeal cancer in the area associated with the socio-economic poor situation of the patient that helps the infiltration and extend of the lesion in several areas. Some authors found that surgery performed in the mandible, followed by facial asymmetry, loss of teeth, and loss of tongue support by the mandible had a high score of quality of life. (Hidalgo et al. 1998 ) According to the results of Kübler, after treatment, there has been no restriction on mouth opening and lip function in earlier studies, which improves a person's quality of life.(Kübler et al.2001) Moreover, despite substantial improvements in surgical and non-surgical treatment regimens, the QoL of OC survivors has not adequately improved.

Additionally, evidence showed that support received from caregivers, formal or informal, is vital in influencing patients’ abilities to process cancer-related information that may improve the quality of life. It also regulates their emotions and helps them cope with medical-related decisions and treatment.(Arora Neeraj et al.2007) Hence, more research is needed to assess and understand the social support needs of patients with oral cancer and to compare their quality of life when patients receive helpful information and decision-making support.

This study has some limitations. A first potential limitation is the use of nonspecific disease questionnaires. Because oral cancer is such a disabling condition, it is quite likely that the vast majority of the reported oral impacts would relate to this condition or its treatment. This could have been addressed through the additional use of a cancer-specific OHRQoL measure. Secondly, the study recruited a small sample of oral cancer patients receiving the treatment and the findings may not be generalizable, and should be interpreted with caution. However, the study design was implemented with high standard scientific rigor, and these weaknesses should not affect the reliability of the results to a great extent. Thirdly, we did not have information on other factors that may also influence HRQoL such as marital status or behaviors like alcohol or smoking. Future research should include cancer-specific assessment of OHRQoL and consider other factors that could be associated with the change in HRQoL in oral and oropharyngeal cancer patients.

The evidence from this study shows that challenges management of oral cancer in resource-limited settings result in several factors including delays in initiation and non-formed patients about their diseases. These challenges are mostly the result of the poor socioeconomic status of the patients, the conception of oral cancer diseases in the region, and the irrespective of the treatment recommendation or medical advice.

With or without the treatment, the OHRQOL of patients has significantly decreased compared to the control group. There is a need to identify factors associated with impaired OHRQoL to customize better therapeutic decisions.

Author contributions Nyimi and Panumvita Kapamona contributed to the conception and design of the study. Paka Lubamba Grace, Kayembe Mwimbi David and Em Kalala Kazadi drafted the manuscript for important intellectual content. Manstshumba Milolo Augustin, Edize Inganya and Muyembi Mwinaminayi caried out the analyses and interpretation data. All authors read and approved the fnal manuscript.

Funding This work was not supported by any Foundation or compagny

Data availability No datasets were generated or analysed during the current study.

Conflict of interest The authors declare no competing interests.

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Table 1: Patients baseline data of cancer related variables.

Characteristics

OCP; N (%)

Non-OCP;

N (%)

P Value

Average age (year)

Age ≤30

Age > 30

36.4 ±4

192 (42)

265 (57.9)

39.4 ±2

167 (45.3)

201 (54.6)

0.327

Sex

Male

Female

301 (65.9)

156 (34.1)

225 (61.1)

143 (38.8)

0.349

Marital Status

Married

Single

Living only together

Divorced

152 (33.3)

134 (29.3)

115 (25.1)

56 (12.3)

96 (26.1)

133 (36.1)

101 (27.4)

38 (9.3)

0.218

Education

Primary level

Secondary level

University level

242 (53)

139 (30.4)

76 (16.6)

160 (43.4)

137 (37.2)

71 (19.3)

0.267

Occupation

Self Employed

Unemployed

Stopped working due to cancer

Casual employment

99 (21.7)

189 (41.4)

49 (10.7)

120 (26.2)

172 (46.7)

104 (28.2)

-

92 (25.0)

0.033

Religion

Catholic

Christian

Muslim

127 (27.8)

269 (58.9)

61 (13.3)

159 (43.2)

195(52.9)

14 (3.8)

0.020*

Financier source

Self-support

Support from family

Government

ONG

208 (45.5)

82 (17.9)

45 (9.8)

122 (26.7)

-

Cancer stage

I

II

III

IV

10 (2.2)

23 (5.0)

121 (26.4)

305 (66.4)

-

Treatment

Surgery alone or associated by chemotherapy

Observation therapy

Palliation therapy

Radiotherapy

Traditional medicine

96 (21)

136 (29.8)

81 (17.7)

28 (6.1)

116 (25.4)

-

Legend:

Note: Data presented as n (%) or mean ±standard deviation.

Abbreviations: * Statistically signiﬁcant difference, %; percentage, N; sample, OCP; oral cancer patient.

Table 2. Delays in treatment initiation and Side-effects of cancer treatment

Variables	Effective N=459	Percentage
Delays in treatment initiation
Delayed initiating treatment after diagnosis	312	68.3%
Delayed medical appointments after initiation of treatment	147	32.2
Side-effects	Effective N=96	Percentage
Loss of hair	0
Vomiting	38	39.58%
Oral wounds	7	7.29%
weakness	25	26.o4%
constipation	15	15.62%
diarrhea	7	7.29%
Skin rash	3	3.12%
Loss of appetite	5	5.20%

Table 3. Comparison of oral health‑related quality of life between groups

OHIP-14	Mean±SD		P-Value
OHIP-14	OCP Group	Control Group	P-Value
Functional limitation	5.06±2.21	1.40±1.38	0.000
Physical pain	4.34±2.09	2.16±1.45	0.000
Psychological discomfort	5.10±1.44	3.54±1.64	0.004
Physical disability	4.43±2.63	3.31±1.24	0.023
Psychological disability	5.25±2.12	2.40±1.43	0.000
Social disability	3.55±2.66	2.33±1.22	0.120
Handicap	1.45±2.28	1.34±1.41	0.070
Total	29.18±15.43	16.48±9.77	0.003

Table 4: Comparison of oral health‑related quality of life between clinical variables

Clinical variables	OHIP-14 (Mean±SD)	P^a-Value
Treatment		0.132
Surgery alone or + chemotherapy	12.00 ± 5.16
Observation therapy	29.88 ± 10.65
Palliation therapy	23.65 ±11.61
Radiotherapy	21.46 ± 9.55
Traditional medicine	30.64 ±9.86

^aOne‑way ANOVA test. OHIP‑14: Oral Health Impact Profile, SD: Standard deviation.

No competing interests reported.

Challenges Management of Patients with Oral Cancer and Its Impact on Oral health‑related quality of life in Resource-limited Settings

Status:

Version 1

Abstract

Figures

1. Introduction

2. Materials And Methods

3. Results

4. Discussion

Conclusion and recommendations

Declarations

References

Tables

Additional Declarations

Status:

Version 1