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Perception of Cervical Cancer Patients on their Financial Challenges in Western Kenya

Perception of Cervical Cancer Patients on their Financial Challenges in Western Kenya Background: The number of cervical cancer cases is reported to increase among women of reproductive age in the recent past with patients facing challenges with care and management of the illness. However, little is known about the financial challenges these patients undergo in contexts such as western Kenya. This study assessed financial challenges and sources of financial assistance for cervical cancer patients in western Kenya. Methods: A cross-sectional study involving 334 cervical cancer patients was conducted in Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu from September 2014 to February 2015. Structured questionnaire, in-depth interview guide and key informant interview guide were used to collect data. Quantitative data was analyzed using Statistical Package for Social Scientists (SPSS) Version 20 at a statistical significance of P ≤ 0.05, descriptive statistics and crosstabulations were performed. For qualitative data, the responses were transcribed verbatim and the content was then analyzed by searching for emerging themes on the financial challenges faced by cervical cancer patients. Qualitative data was presented in textual form with verbatim reports for illustrations. Results: The key financial challenges from the study were costs of medication 291 (87%), cost of travel 281 (84%) and cost of diagnostic tests 250 (75%). Other costs incurred by the patients were cost of cloths and wigs 91 (27%), and cost of home and child care 80 (24%). Most 304 (91%) of the cervical cancer patients admitted and referred to JOOTRH did not have insurance cover and only 30 (9%) had National Hospital Insurance Fund cover which catered for only bed component of inpatient costs. Results showed that no patient received any assistance from well-wishers. Only a few received assistance from charity organizations 43 (13%), friends 91 (27%) and colleagues 31 (9%). Some patients received some assistance from relatives 32 (10%) and church 32 (10%). Conclusion: Cervical cancer patients experience several financial challenges yet only few of them had insurance cover which catered for only bed component of inpatient costs. There is a need for the Kenyan health care system to develop mechanisms for provision of financial support for cervical cancer patients. Keywords: Cervical cancer, Financial challenges, Kenya Background women are diagnosed with cervical cancer and 2451 die Cervical and breast cancers are the leading causes of from the disease. Cervical cancer ranks as the first most cancer morbidity and mortality among the female popu- frequent cancer among women in Kenya [2]. lation worldwide [1]. In the year 2011, cancer of the Until recently, little has been known about the costs breast and cancer of the cervix were the most prevalent incurred by cancer patients and their families in the cancers with 1,676,633 and 527,624 new cases of women cancer management internationally [3]. Berkman and being diagnosed with the two cancers respectively. Breast Sampson [4] argued that there is growing awareness that cancer is the leading cause of cancer related deaths cancer can have a major financial impact on newly diag- followed by cervical cancer among female worldwide [1]. nosed patients, those living with the disease and their In Kenya, current estimates indicate that every year 4802 families, they further report that, it has been claimed that almost all families confronted with a diagnosis of * Correspondence: adhiambojane33@yahoo.com cancer have financial challenges of some kind. Cancer Jaramogi Oginga Odinga University of Science and Technology, P.O patients are more likely to report financial challenges Box.210-40601, Bondo, Kenya Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 2 of 8 than persons without cancer [5, 6]. Timmons et al. [7] Gitonga [20] the total cost of breast cancer treatment at also noted that patients incurred a wide range of add- Kenyatta National Hospital (KNH) in Kenya is well itional cancer related medical and non- medical ex- above the country’s average wage level and subsidization penses in Ireland revealing the multidimensional nature is required. These studies did not capture financial chal- of the financial and economic burden cancer imposes on lenges unique to cervical cancer patients which is cur- patients and the whole family unit. Cervical cancer pa- rently the leading cause of morbidity and mortality tients incur out of pocket expenses as a result of their related to cancer among women in Kenya and more so condition. Longo et al. [8] explained that these out-of- western Kenya. Little literature exists to describe the fi- pocket costs are varied and might include: expenses dir- nancial challenges of cervical cancer patients in western ectly due to treatment (doctor’s fees); expenses related Kenya. An important purpose of this study was to deter- to treatment (travel costs, prescription, medication, mine financial challenges of cervical cancer patients with wigs); or more general expenses that are as a result of the aim of using this information to develop evidence having cancer (new clothes due to weight fluctuations, based interventions for managing care of cervical cancer different food or nutritional supplements due to the ef- patients in Kenya. fects of chemotherapy). In addition, some patients ex- The study was conducted at Jaramogi Oginga Odinga perience a reduction in income due to time taken away Teaching and Referral Hospital (JOOTRH) which is the from work because of the cancer or its treatment [9]. referral hospital for cancer patients in western part of Those with a low income are particularly vulnerable to Kenya. The total in-patient cervical cancer admissions in the adverse financial and economic effects of incurring 2014 and 2015 when the study was conducted were 681 out of pocket expenses [10]. and 735 respectively. The facility did not have special Being a cancer patient can lead to catastrophic ex- wards for adult cancer patients and therefore the female penses with several consequences including a reduction cancer patients were admitted in gynecological wards. in total household earnings due to family adjustments Other infrastructure that were available for cancer in- for the disease, having to cut-back on “extras” such as cluded: palliative care/ oncology unit and medical social social expenditure or holidays, sale of existing family as- department which helped in case the patients had social sets and having to borrow money. Moreover, it can also problems. Facilities available for management of cervical trigger non-financial consequences, such as financial cancer were cryotherapy and Loop Electrosurgical Exci- stress leading to psychological problems [11–14]. In the sion Procedure (LEEP) equipment. Radiotherapy ma- US more than 2 million cancer survivors did not get one chine was available but was not operational. The facility or more needed medical services because of financial did not have an oncologist, there were three palliative challenges, this was mainly seen among the Hispanic care nurses, a pathologist (mainly conducting biopsies) and black survivors [15]. Need for financial support to and gynecologists who staged cervical cancer and con- counter the loss of income of both cancer patient and ducted surgery where appropriate. The hospital offered family caregiver has been reported in several countries the following services for cervical cancer patients: in Africa [16, 17]. Masika et al. [16], reported financial screening, palliative care, chemotherapy, cryotherapy, challenges among cancer patients in Tanzania. However, conization and surgery. For other associated diagnostic their study did not explore the actual financial chal- and routine laboratory tests the patients would be re- lenges of cervical cancer patients. On the other hand ferred to the neighboring private facilities. Sepulveda et al. [17], in their study conducted in a couple of African countries (Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe) among Human Im- Methods munodeficiency Virus/ Acquired Immune Deficiency Study setting Syndrome (HIV/AIDS) and cancer patients, revealed The study was conducted at JOOTRH in Kisumu from needs for financial support to counter the loss of income September 2014 to February 2015. JOOTRH is a referral of both patient and family caregiver. Mostert et al. [18] hospital serving a catchment area with a population of studied contributors to abandonment of childhood can- more than 5 million people in more than 10 counties in cer treatment in Kenya and established financial burden the western region of Kenya. The hospital serves an area of cancer treatment and lack of insurance as one of the with some of the worst health indicators in the country important predictors to abandonment of treatment. including high prevalence of HIV infection (15.4%) Moreover, long distances to access diagnostic and treat- which is greater than twice that of the national (7.1%) ment services, lack of decentralized diagnostic and treat- prevalence [21]. JOOTRH is the referral hospital for can- ment facilities and a lack of better cancer policy cer patients in western part of Kenya. At the time of this development have been established as factors hindering study, total in-patient cervical cancer admissions were access to cancer treatment in Kenya [19]. According to 681 and 735 in 2014 and 2015 respectively. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 3 of 8 Study design administer the questionnaire to them. The partici- This was a hospital based cross-sectional descriptive pants answered the questionnaires by themselves ex- study. It involved collection of both quantitative and cept for some 21 (6.3%) who needed help and were qualitative data from cervical cancer patients seeking assisted by the researcher. care at JOOTRH. Two medical social workers were interviewed (see Additional file 2) by the researcher face to face and their Study participants responses were audio recorded and transcribed verbatim. The study participants consisted of cervical cancer pa- In-depth interview guide (see Additional file 3) was used tients who were over 18 years visiting JOOTRH or re- to collect qualitative data from 12 eligible patients by ferred to JOOTRH for further treatment or palliative the researcher. The patients were guided to narrate their care services. The eligible respondents were sourced story concerning their financial challenges during the from palliative care clinics, oncology unit, and obstetric disease trajectory. Both sessions took about 40 min each. and gynecological unit within JOOTRH. They were audio recorded and later transcribed verbatim and content analysis done and themes generated to en- Sampling Design rich quantitative data. Finally, the transcripts were The sampling strategy involved purposive sequential en- returned to the social workers and 7 patients (5 of them rolment of patients with histologically proven cervical had died) who were in agreement that the information cancer as they became available at the facility till the re- reflected their expressions. quired sample size was reached. Medical social workers were also purposively sampled for key informant inter- Data management and analysis view. The healthcare providers in charge of the patients Quantitative data was coded, edited and cleaned to and palliative care specialist helped identify patients based check for any errors and entered in Statistical Package on information in the patient files then referred them to for Social Scientists (SPSS) version 20 and presented in the researcher who confirmed their eligibility and pro- tables. Descriptive statistics and crosstabulations was ceeded to seek consent from each of them. This exercise done to analyze how cervical cancer patients differed in was done every day in the gynecological ward (ward 4) their financial challenges by their socio-demographic and in room 19/16 where cervical cancer screening, cryo- and clinical characteristics. therapy and LEEP was performed. Patients were also se- For qualitative data, the responses were transcribed lected on Tuesdays in the gynecological outpatient clinics verbatim; the content was then analyzed by searching (GOPC) where patients who were diagnosed at early stage for emerging themes on the financial challenges faced by were done for surgery. This was done until the desired cervical cancer patients. Qualitative data was presented sample size (334) was achieved. Participants for in-depth in textual form with verbatim reports alongside quantita- interviews were selected by the care providers based on tive data for illustrations. how long they had been symptomatically sick (at least more than one year) and consented to the study. Pilot sur- Results vey was conducted at the neighboring Kisumu East sub- Socio-Demographic and Clinical Characteristics of county hospital to test the study tools and improve their Respondents quality and efficiency. A total of 334 cervical cancer patients participated in the study. Those aged between 36 and 46 years were 114 Research Procedure (34%), with 93 (28%) aged between 18 and 35 years, 52 A structured questionnaire (see Additional file 1)was (16%) aged between 47 and 57, while 75 (22%) were aged administered to the recruited patients by the researcher 58 years and above. One hundred and seventy-eight and research assistants. The researcher liaised with the (53%) of the survey respondents were widowed, 104 relevant health care providers at the palliative care unit, (31%) were married, 31 (10%) divorced or separated obstetric/gynecological wards and on GOPC days which while only 21 (6%) were single. One seventy-nine (54%) were appropriate for identification of the eligible clients. of the respondents had primary level of education, 62 The researcher and the health care team worked out a (18%) had secondary education and 43 (13%) had no programme on how the researcher could access the education at all while only 50 (15%) had tertiary educa- respondents without putting any strain on the respon- tion. One twenty-nine (54%) of the respondents were at dents such as by keeping them longer in the facility. The cancer stage IV, 63 (19%) were at stage III, 52 (15%) at researcher also took contacts of clients who consented stage I and 40 (12%) were at stage II. Two hundred and to the study but were not able to respond to the ques- twenty-two (67%) of the respondents had not under- tionnaire at that time and made private arrangement taken routine screening for cervical cancer previously, with them on when and where it was convenient to while only 33% had been routinely screened. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 4 of 8 Two hundred and seventeen (65%) respondents were management of cervical cancer patients revealed the diagnosed of cervical cancer in less than one-year period theme of inadequate resources. They stated that the fa- prior to the study while only 31 (9%) were diagnosed in cility had inadequate resources for managing cancer. For more than one year before the study. The rest of the pa- instance, the radiotherapy machine was not operational tients did not know when they were diagnosed. Two since it had broken down sometime back, there was lack hundred and nine (63%) of the respondents were Hu- of specialized diagnostic machines and oncologists, fi- man Immunodeficiency Virus (HIV) Positive while only nance allocated for palliative care and oncology unit was 73 (22%) were negative. The rest of the patients did not insufficient for supplies required. Due to these chal- know their HIV status. lenges the patients were forced to seek some diagnostic One fifty-nine (48%) respondents engaged in small tests in the private facilities which were very expensive scale farming whilst 145 (43%) were engaged in small for them. The care providers were forced to refer them scale business. Only 30 (9%) were formally employed. for treatment to other facilities far away such as KNH or One hundred and five (31%) of the patients received Mulago Hospital in Uganda hence escalating costs for blood transfusion and pain killers and 74 (22%) received them. Faced with such situations, most of the patients pain killers only. Most patients reported being put on just gave up treatment and went back home. antibiotics, haematemics for blood boosting and pain killing drugs such as aspirin, dichlophenac, brufen, intra- Health insurance cover musculine morphine and paracetamol. Thirty-two Three hundred and four (91%) of the cervical cancer pa- (10%) of the respondents received chemotherapy, hae- tients admitted and referred to JOOTRH did not have matemics 40 (12%), while only 11 (3%) of the respon- adequate insurance cover and only 30 (9%) had National dents received radiotherapy and chemotherapy. Thirty Hospital Insurance Fund cover which catered for only (9%) of the patients received surgery while 42 (13%) bed component of inpatient costs.This in most cases did were treated by LEEP. not include medication such as chemotherapy, painkiller (morphine) which patients were supposed to buy from Financial challenges of cervical cancer patients their out of pocket expenses. The key financial challenges from the study were costs of medication 291 (87%), cost of travel 281 (84%) and Financial assistance received by patients cost of diagnostic tests 250 (75%). Other costs incurred Results showed that no patient received any assistance by the patients were cost of cloths and wigs 91 (27%), from well-wishers. Only a few 43 (13%) received assist- and cost of home and child care 80 (24%). Table 1 shows ance from charity organizations such as (Tumaini la financial challenges experienced by patients. maisha health services, and Kenya Medical Research In- Further in-depth interviews with patients revealed the stitution- Center for Disease Control), 91 (27%) received theme of hygienic needs. Most patients incurred a lot of little assistance from friends, while 31 (9%) received little money in maintaining their personal hygiene. They assistance from colleagues. Some patients received a stated that keeping clean as a woman was a great chal- little assistance from relatives 32 (10%) and church 32 lenge that they were facing. Bleeding, discharge, and pus (10%). Table 2 illustrates the results. from their private parts really irritated them; in order to Further interview with a medical social worker re- keep somehow clean, they had to use pads, swabs and at vealed the theme of lack of reliable source of financial times medication or any substance that could counter assistance. He stated that patients did not receive sub- foul smell that emanated from their private parts. stantial assistance, from the hospital apart from waiver Key informant interviews with two medical social that very few needy cases could get to help offset their workers on the status of the facility as regards hospital bill. There was no charity organization that was targeting cervical cancer patients, the few who benefited from charity organizations ware actually HIV/AIDS Table 1 Financial challenges by cervical cancer patients clients on care whose cases were considered as compli- Variable Yes No Total cations of HIV. He expressed a feeling that cervical Cost of treatment 228 (68%) 106 (32%) 334 (100%) cancer patients needed similar concerted effort from Cost of medication 291 (87%) 43 (13%) 334 (100%) government and charity organizations in order for them Cost of home or child care 80 (24%) 254 (76%) 334 (100%) to manage their condition. Further inquiry revealed a theme of high cost of treat- Cost of clothes and wigs 91 (27%) 243 (73%) 334 (100%) ment. This meant that most of the patients were not Cost of diagnosis 250 (75%) 84 (25%) 334 (100%) able to cater for their treatment. He explained that most Travel costs 281 (84%) 53 (16%) 334 (100%) of the patients were poor and could not afford cancer Cost of nutritional supplements/ 217 (65%) 117 (35%) 334 (100%) treatment, most times they were referred for further Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 5 of 8 Table 2 Financial Assistance Sources of financial assistance None n (%) Little n (%) Moderate n (%) Substantial n (%) Friends 243 (73%) 91 (27%) 0 (%) 0 (%) Colleagues 303 (91%) 31 (9%) 0 (%) 0 (%) Relatives 84 (25%) 218 (65%) 32 (10%) 0 (%) Well-wishers 334 (100%) 0 (%) 0 (%) 0 (%) Charity Organizations 270 (81%) 43 (13%) 0 (%) 21 (6%) Church 136 (40%) 156 (47%) 32 (10%) 10 (3%) Key, None: Did not receive any financial assistance, Little: Received about 10% of total cost, Moderate: Received about 30% of total cost, Substantial: Received about 90% and above of total cost, well-wisher: A person who is not a friend, colleague or a church-mate to a cervical cancer patient, and not a member or affiliated to any charity organization but offers to give financial assistance to a patient. treatment to KNH or Uganda or at times told to buy Discussion drugs for chemotherapy but they could not afford. Some Results from this study revealed several financial chal- of them were abandoned in the hospital and stayed until lenges that cervical cancer patients experienced. Major- they were given waiver or died. Others went back home ity of the patients reported engaging in small scale when they could not meet costs of chemotherapy. farming and business with only a few in formal employ- In- depth interviews with patients further showed that ment, this implied low income status of the patients. most of the patients depended on their relatives, church Moreover, the patients did not have adequate medical members and their children for financial assistance most cover to relieve their financial burden. As a result, the of whom did not have any formal employment or steady patients largely needed financial support to enable them source of income. Hence the assistance was too little for meet costs of care. This agrees with. the need they had. Gitonga [20] who established that the total cost of breast cancer treatment at Kenyatta National Hospital (KNH) in Kenya is well above the country’s average wage Financial challenges by participants sociodemographic level and subsidization is required. The patients experi- and clinical characteristics enced challenges with their treatment in terms of cost A larger proportion of Cervical cancer stage IV respon- and access in that the treatment was unaffordable and dents experienced financial challenges as compared to inaccessible. Most patients could not go to KNH or other lower stages. For instance, cost of treatment was Mulago hospital in Uganda where they were referred for 146 (64%), cost of medication 168 (58%) and cost of treatment due to financial challenges. Cervical cancer diagnosis 158 (63%). Similarly, large proportion of patients also experienced financial challenges in acquisi- widows experienced financial challenges as compared to tion of nutritional supplements which they needed to other marital status. For instance, cost of treatment was boost their health status. Most patients incurred cost of 134 (59%), cost of medication 156 (54%) and cost of medication, travel and diagnostic tests. In contrast, fewer travel 167 (59%). HIV positive respondents bore dispro- patients incurred cost of cloths and wigs, and cost of portionate burden of financial challenges as seen in cost home and child care. This may be explained by the exist- of treatment 135 (59%), and cost of travel 177 (63%). Re- ence of strong extended family ties from which most pa- spondents who had formal employment experienced tients benefited by receiving free home and child care lowest proportion of financial challenges as seen in cost assistance. The fewer number of patients reporting in- of treatment 20 (9%), and cost of diagnosis 20 (8%). A curring costs of clothes and wigs can be explained by larger proportion of Participants who attained primary the fact that most patients in this study were not on level of education reported experiencing financial chal- treatment modalities that interfered with their body, lenges compared to other levels of education. For in- such as hair loss or increase in weight. Most patients stance, cost of treatment 136 (60%) and cost of diagnosis despite being in stage III& IV of the disease, were only 136 (54%). Similarly, larger proportion of respondents treated with blood transfusion, haematemics and pain who were treated by blood transfusion and pain killers killers. They may not have required clothes and wigs reported financial challenges than the rest of the treat- which are expenses associated with those who receive ment modalities. Ninety-four (41%) reported challenges chemotherapy and radiotherapy treatments. This concurs with cost of treatment while 94 (38%) reported chal- with Masika et al. [16] who also revealed that Tanzanian lenges with cost of diagnosis. While a smaller proportion cancer patients incurred a lot of costs such as medication, of insured participants experienced financial challenges travel, food, water, home and child care among others. compared to the non-insured as illustrated in Table 3. Despite the fact that most patients were poor and could Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 6 of 8 Table 3 Financial challenges by participants sociodemographic and clinical characteristics Characteristics Cost of Cost of Cost of home and Cost of clothes Cost of Cost of Cost of Nutritional N (%) treatment (%) Medication (%) childcare (%) and wigs (%) diagnosis (%) travel (%) supplements (%) Cancer stage I 0 41 (14) 0 0 10 (4) 42 (15) 30 (14) 52 (16) II 30 (13) 30 (10) 30 (38) 30 (33) 30 (12) 30 (11) 20 (9) 40 (12) III 52 (23) 52 (18) 10 (12) 10 (11) 52 (21) 52 (18) 42 (19) 63 (19) IV 146 (64) 168 (58) 40 (50) 51 (56) 158 (63) 157 (56) 125 (58) 179 (54) Marital status Married 73 (32) 94 (32) 20 (5) 31 (34) 84 (34) 83 (30) 73 (34) 104 (31) Divorced 10 (4) 20 (7) 10 (12) 10 (11) 10 (4) 20 (7) 20 (9) 31 (9) Widowed 134 (59) 156 (54) 50 (63) 50 (55) 135 (54) 167 (59) 114 (52) 178 (53) Single 11 (5) 21 (7) 0 0 21 (8) 11 (4) 10 (5) 21 (7) HIV Status Positive 135 (59) 177 (61) 50 (63) 50 (55) 136 (54) 177 (63) 124 (57) 209 (63) Negative 52 (23) 73 (25) 20 (25) 20 (22) 73 (29) 63 (22) 62 (29) 73 (22) Don’t now 41 (18) 41 (14) 10 (12) 21 (23) 41 (17) 41 (15) 31 (14) 52 (15) Income SC Farming 105 (46) 127 (44) 20 (25) 31 (34) 117 (47) 127 (45) 85 (39) 159 (48) SC Business 103 (45) 134 (46) 40 (50) 40 (44) 113 (45) 124 (44) 102 (47) 145 (43) Employed 20 (9) 30 (10) 20 (25) 20 (22) 20 (8) 30 (11) 30 (14) 30 (9) Education None 10 (4) 32 (11) 10 (13) 10 (11) 32 (13) 43 (16) 10 (5) 43 (13) Primary 136 (60) 147 (51) 30 (37) 41 (45) 136 (54) 147 (52) 95 (44) 179 (53) Secondary 52 (23) 62 (21) 20 (25) 20 (22) 52 (21) 51 (18) 62 (28) 62 (19) Tertiary 30 (13) 50 (17) 20 (25) 20 (22) 30 (12) 40 (14) 50 (23) 50 (15) Treatment Chemo 32 (14) 32 (11) 10 (11) 10 (11) 32 (13) 32 (11) 32 (15) 32 (10) Chemo+rad 11 (5) 11 (4) 0 0 11 (4) 11 (4) 11 (5) 11 (3) Surgery 20 (9) 20 (7) 20 (25) 20 (22) 20 (8) 20 (7) 10 (5) 30 (9) Bld tran+Pan k 94 (41) 94 (32) 0 11 (12) 94 (38) 94 (34) 63 (29) 105 (31) Pain killers 31 (14) 63 (21) 20 (25) 20 (22) 63 (25) 42 (15) 41 (19) 74 (22) Haematemics 40 (17) 40 (14) 30 (37) 30 (33) 30 (12) 40 (14) 40 (18) 40 (12) LEEP 0 31 (10) 0 0 0 42 (15) 20 (9) 42 (13) Insurance Yes 30 (13) 30 (10) 20 (25) 20 (22) 30 (12) 30 (10) 30 (14) 30 (9) No 198 (87) 261 (90) 60 (75) 71 (78) 220 (88) 251 (90) 187 (86) 304 (91) Total 228 (100) 291 (100) 80 (100) 91 (100) 250 (100) 281 (100) 217 (100) 334 (100) KEY Chemo: chemotherapy, Bld tran + Pan k: Blood transfusion and pain killers, Chemo + rad: chemotherapy and radiotherapy SC Farming: small scale farming, SC Business: small scale business hardly bear the costs, the patients expressed a need for study finding differs with Aniebue et al. [22], report on financial support to cater for these costs. Similarly, in- ethical, socioeconomic, and cultural considerations in gy- creasing demand for financial assistance and financial necologic cancer care in South Africa, which revealed that challenges among cancer patients have been reported in cancer treatment was free for patients who earn less than Ireland [3]. There is growing awareness that cancer can an established minimum income. The same report also have major financial impact on newly diagnosed patients, revealed that in India surgery, radiotherapy, and chemo- those living with the disease, and their families [4]. This therapy treatments were partially or totally subsidized by Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 7 of 8 government depending on a set minimum income level. but this could be corroborated by the actual observable Financial needs among cancer patients have also been re- experiences they faced. ported by Sepulveda et al. [17] in their study conducted in Based on the study findings, there exists numerous fi- a couple of African countries (Botswana, Ethiopia, nancial challenges that cervical cancer patients experience Tanzania, Uganda and Zimbabwe) on quality of care at in the regional facilities, these range from treatment, diag- the end of life among cancer patients. Similarly, Murray nosis, travel and personal maintenance challenges. et al. [23] and Masika et al. [16] also revealed need for fi- nancial support among cancer patients in Kenya and Conclusions Tanzania respectively. Other international studies have This study reveals that cervical cancer patients experi- also shown increasing need for financial assistance among ence numerous financial challenges and there is a need cancer patients [4–6]. for the health care system to develop mechanisms for From the qualitative interviews it was evident that most supporting them especially patients in cancer stage IV, patients were poor and could not afford treatment, this widows, HIV positive patients and those with low educa- made some of them to abandon treatment and go back tion as they bore the largest brunt of financial chal- home while others just stayed in the ward with minimal lenges. The government should increase budgetary treatment till they succumbed. This agrees with Mostert allocation for cancer management and explore modal- et al. [18] who studied contributors to abandonment of ities of subsidizing cervical cancer treatment to enable childhood cancer treatment in Kenya and established finan- most patients to afford. The wider society also need to cial burden of cancer treatment and lack of insurances as be sensitized to offer support to members of the society one of the important predictors to abandonment of treat- suffering from life threatening diseases such as cervical ment. Similarly, in the US more than 2 million cancer survi- cancer among them. Patients should be screened for fi- vors did not get one or more needed medical services nancial challenges and its impact on their quality of life because of financial concerns this was mainly seen among assessed. Finally, more studies should be done focusing theHispanicand black survivors[15]. Duetouniquenature on actual costs incurred by cervical cancer patients. and symptoms of cervical cancer which includes constant bleeding and discharge from vagina, the patients also faced Additional files challenges with maintaining personal hygiene which led to increased financial needs. This concurs with Timmons et al. Additional file 1: Questionnaire for Cervical Cancer Patients. Perception [7] who noted that patients incurred a wide range of add- of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi itional cancer related medical and non- medical expenses in Oginga Odinga Teaching and Referral Hospital in Western Kenya. Socio- Demographics and health history of cervical cancer patients that Ireland revealing the multidimensional nature of the finan- is presented in this paper. Financial challenges of cervical cancer patients cial and economic burden cancer imposes on patients. that is presented in this paper. Health insurance cover status of cervical This study also exposed resource-based challenges cancer patients that is presented in this paper. Sources of financial assistance for cervical cancer patients that is presented in this paper. such as lack of radiotherapy and diagnostic machines, Other data not presented in this paper: Patient Care and informational lack of oncologist and inadequate supplies for palliative needs. Spiritual needs of cervical cancer patients. (DOCX 36 kb) care. This concurs with Louise et al. [19] who also re- Additional file 2: Interview Guide for Healthcare Providers. Perception ported lack of decentralized diagnostic and treatment fa- of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi Oginga Odinga Teaching and Referral Hospital in Western Kenya. Physical cilities and a lack of better cancer policy as factors and material needs of cervical cancer patients -Entails financial hindering access to cancer treatment in Kenya. challenges, financial assistance and health insurance cover that is Further analysis of financial challenges by participants presented in this paper. Other data not presented in this paper: Biographical information of health care providers. Psychosocial characteristics showed that patients who were at cancer needs of cervical cancer patients. Informational needs of cervical stage IV, widows, HIV positive patients and those with cancer patients. (DOCX 16 kb) lower education bore disproportionate burden of finan- Additional file 3: In-Depth Interview Guide for Cervical Cancer Patients. cial challenges. Perception of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi Oginga Odinga Teaching and Referral Hospital in Western This study was limited to cervical cancer patients seek- Kenya. Physical and material needs of cervical cancer patients- Entails ing care at JOOTRH, this would mean that patients who financial challenges, financial assistance and health insurance cover that were sick at home and could not access care at the hos- is presented in this paper. Other data not presented in this paper: Psychosocial needs of cervical cancer patients. Informational needs of pital were left out. Such patients may be experiencing cervical cancer patients. Additional concerns of cervical cancer patients. worse financial challenges but given that JOOTRH is a (DOCX 17 kb) public hospital which is generally not so costly and has a waiver system for extremely needy patients, the patient Abbreviations population was deemed representative. Similarly, pa- GOPC: Gynecological out-patient clinic; HIV/AIDS: Human Immunodeficiency tients may have exaggerated their financial challenges Virus/ Acquired Immune Deficiency Syndrome; JOOTRH: Jaramogi Oginga with the hope that they would receive some assistance Odinga Teaching and Referral Hospital; KNH: Kenyatta National Hospital; Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 8 of 8 LEEP: Loop Electrosurgical Excision Procedure; SPSS: Statistical Package for 8. Longo CJ, Deber R, Fitch M, Williams AP, D'Souza D. An examination of Social Scientists cancer patients’ monthly ‘out-of-pocket’ costs in Ontario, Canada. Eur J Cancer Care (Engl). 2007;16(6):500–7. 9. Bennett JA, Brown P, Cameron L, Whitehead LC, Porter D, McPherson KM. Acknowledgements Changes in employment and household income during the 24 months We are indebted to cervical cancer patients in Western Kenya, the research following a cancer diagnosis. Support Care Cancer. 2009;17(8):1057–64. assistants for data collection and JOOTRH staff for their assistance. 10. Arozullah AM, Calhoun EA, Wolf M, Finley DK, Fitzner KA, Heckinger EA, Gorby NS, Schumock GT, Bennett CL. The financial burden of cancer: Funding estimates from a study of insured women with breast cancer. J Support This work was supported by kind contributions from family members. Oncol. 2004;2(3):271–8. 11. Chapple A, Ziebland S, McPherson A, Summerton N. Lung cancer patients’ Availability of data and materials perceptions of access to financial benefits: a qualitative study. Br J Gen The authors wish not to make the data public since respondents were Pract. 2004;54(505):589–94. guaranteed confidentiality of information during data collection. 12. Chirikos TN, Russell-Jacobs A, Cantor AB. Indirect economic effects of long- term breast cancer survival. Cancer Pract. 2002;10(5):248–55. Authors’ contributions 13. Dockerty JD, Skegg DC, Williams SM. Economic effects of childhood cancer JAO designed, carried out the survey study at JOOTRH, managed and on families. J Paediatr Child Health. 2003;39(4):254–8. analyzed data and participated in the drafting of the manuscript. EON 14. Finocchiaro CY, Petruzzi A, Lamperti E, Botturi A, Gaviani P, Silvani A, Sarno gave guidance in designing the study, data analysis and drafting of the L, Salmaggi A. The burden of brain tumor: a single-institution study on manuscript. Both authors read and approved the final manuscript. psychological patterns in caregivers. J Neuro-Oncol. 2012;107(1):175–81. 15. Weaver KE, Rowland JH, Bellizzi KM, Noreen MA. Forgoing Medical Care because of Cost: Assessing Disparities in Health Care Access among Cancer Ethics approval and consent to participate Survivors living in the United States. Cancer. 2010;116(14):3493–504. Ethical clearance was obtained from Jaramogi Oginga Odinga Teaching and 16. Masika GM, Wettergren L, Kohi TW, von Essen L. Health-related quality of life Referral Hospital Ethical Review Board, reference number- (ERC.1B/VOL.1/135). and needs of care and support of adult Tanzanians with cancer: a mixed- The nature and purpose of the study was explained to the potential methods study. Health Qual Life Outcomes. 2012;10:133. participants verbally and in writing (if the patient could read) to enable 17. Sepulveda C, Habiyambere V, Amandua J, Borok M, Kikule E, Mudanga B, them make informed consent as a basis for enrollment. Participation was Ngoma T, Solomon B. Quality care at the end of life in Africa. BMJ. 2003; voluntary, confidentiality anonymity was guaranteed. Individual written 327(7408):209–13. consent was obtained from each participant before being enrolled into 18. Mostert S, Njuguna F, Langat SC, Slot AJ, Skiles J, Sitaresmi MN, van de Ven PM, the study. Patients who were unable to write were asked to sign through thumb Musimbi J, Vreeman RC, Kaspers GJ. Two overlooked contributors to print. abandonment of childhood cancer treatment in Kenya: parents’ social network and experiences with hospital retention policies. Psychooncology. 2014;23(6): Consent for publication 700–7. https://doi.org/10.1002/pon.3571. This is not applicable in this study since the authors’ maintained anonymity 19. Makau-Barasa LK, Sandra BG, Othieno A, Stephanie W, Asheley S, Bennett during data collection and management. No specific individual’s details are AV. Improving Access to Cancer Testing and Treatment in Kenya. Journal of presented in this work. Global Oncology. 2017. https://doi.org/10.1200/JGO.2017.010124. 20. Gitonga SN. The Cost Burden of Breast Cancer Treatment at Kenyatta Competing interests National Hospital: A Patient’s Perspective: Nairobi University Repository; The authors declare that they have no competing interests. 2015. U51/69344/2013. 21. Inzaule S, Otieno J, Kalyango J, Nafisa L, Kabugo C, Nalusiba J, Kwaro D, Zeh C, Karamagi C. Incidence and predictors of first line antiretroviral regimen Publisher’sNote modification in western Kenya. PLoS One. 2014;9(4):93106. Springer Nature remains neutral with regard to jurisdictional claims in published 22. Aniebue UU, Tonia CO. Ethical, Socioeconomic, and Cultural Considerations maps and institutional affiliations. in Gynecologic Cancer Care in Developing Countries. International Journal of Palliative Care. 2014;2014(2014):6. Author details 23. Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed Jaramogi Oginga Odinga University of Science and Technology, P.O and developing countries: lessons from two qualitative interview studies of Box.210-40601, Bondo, Kenya. Department of Sociology and Anthropology, patients and their carers. BMJ. 2003;326(7385):368. Maseno University, Private Bag, Maseno, Kenya. Received: 3 November 2016 Accepted: 28 March 2018 References 1. Globocan. International Agency for Research in Cancer. France: WHO; 2012. 2. ICO, Information Centre on HPV and Cancer. 2017. 3. Sharp L, Timmons A. The financial impact of a cancer diagnosis. Ireland: N.C. Submit your next manuscript to BioMed Central R.I.C. Society; 2010. 4. Berkman BJ, Sampson SE. Psychosocial effects of cancer economics on and we will help you at every step: patients and their families. Cancer. 1993;72(9 Suppl):2846–9. • We accept pre-submission inquiries 5. Arndt V, Merx H, Stegmaier C, Ziegler H, Brenner H. Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general � Our selector tool helps you to find the most relevant journal population: a population-based study. J Clin Oncol. 2004;22(23):4829–36. � We provide round the clock customer support 6. Arndt V, Merx H, Stegmaier C, Ziegler H, Brenner H. Persistence of � Convenient online submission restrictions in quality of life from the first to the third year after diagnosis in women with breast cancer. J Clin Oncol. 2005;23(22):4945–53. � Thorough peer review 7. Timmons A, Gooberman-Hill R, Sharp L. The multidimensional nature of the � Inclusion in PubMed and all major indexing services financial and economic burden of a cancer diagnosis on patients and their � Maximum visibility for your research families: qualitative findings from a country with a mixed public-private healthcare system. Support Care Cancer. 2013;21(1):107–17. https://doi.org/ Submit your manuscript at 10.1007/s00520-012-1498-4. www.biomedcentral.com/submit http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Health Services Research Springer Journals

Perception of Cervical Cancer Patients on their Financial Challenges in Western Kenya

BMC Health Services Research , Volume 18 (1) – Apr 10, 2018

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Springer Journals
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Copyright © 2018 by The Author(s).
Subject
Medicine & Public Health; Public Health; Health Administration; Health Informatics; Nursing Research
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1472-6963
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10.1186/s12913-018-3073-2
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29631577
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Abstract

Background: The number of cervical cancer cases is reported to increase among women of reproductive age in the recent past with patients facing challenges with care and management of the illness. However, little is known about the financial challenges these patients undergo in contexts such as western Kenya. This study assessed financial challenges and sources of financial assistance for cervical cancer patients in western Kenya. Methods: A cross-sectional study involving 334 cervical cancer patients was conducted in Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu from September 2014 to February 2015. Structured questionnaire, in-depth interview guide and key informant interview guide were used to collect data. Quantitative data was analyzed using Statistical Package for Social Scientists (SPSS) Version 20 at a statistical significance of P ≤ 0.05, descriptive statistics and crosstabulations were performed. For qualitative data, the responses were transcribed verbatim and the content was then analyzed by searching for emerging themes on the financial challenges faced by cervical cancer patients. Qualitative data was presented in textual form with verbatim reports for illustrations. Results: The key financial challenges from the study were costs of medication 291 (87%), cost of travel 281 (84%) and cost of diagnostic tests 250 (75%). Other costs incurred by the patients were cost of cloths and wigs 91 (27%), and cost of home and child care 80 (24%). Most 304 (91%) of the cervical cancer patients admitted and referred to JOOTRH did not have insurance cover and only 30 (9%) had National Hospital Insurance Fund cover which catered for only bed component of inpatient costs. Results showed that no patient received any assistance from well-wishers. Only a few received assistance from charity organizations 43 (13%), friends 91 (27%) and colleagues 31 (9%). Some patients received some assistance from relatives 32 (10%) and church 32 (10%). Conclusion: Cervical cancer patients experience several financial challenges yet only few of them had insurance cover which catered for only bed component of inpatient costs. There is a need for the Kenyan health care system to develop mechanisms for provision of financial support for cervical cancer patients. Keywords: Cervical cancer, Financial challenges, Kenya Background women are diagnosed with cervical cancer and 2451 die Cervical and breast cancers are the leading causes of from the disease. Cervical cancer ranks as the first most cancer morbidity and mortality among the female popu- frequent cancer among women in Kenya [2]. lation worldwide [1]. In the year 2011, cancer of the Until recently, little has been known about the costs breast and cancer of the cervix were the most prevalent incurred by cancer patients and their families in the cancers with 1,676,633 and 527,624 new cases of women cancer management internationally [3]. Berkman and being diagnosed with the two cancers respectively. Breast Sampson [4] argued that there is growing awareness that cancer is the leading cause of cancer related deaths cancer can have a major financial impact on newly diag- followed by cervical cancer among female worldwide [1]. nosed patients, those living with the disease and their In Kenya, current estimates indicate that every year 4802 families, they further report that, it has been claimed that almost all families confronted with a diagnosis of * Correspondence: adhiambojane33@yahoo.com cancer have financial challenges of some kind. Cancer Jaramogi Oginga Odinga University of Science and Technology, P.O patients are more likely to report financial challenges Box.210-40601, Bondo, Kenya Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 2 of 8 than persons without cancer [5, 6]. Timmons et al. [7] Gitonga [20] the total cost of breast cancer treatment at also noted that patients incurred a wide range of add- Kenyatta National Hospital (KNH) in Kenya is well itional cancer related medical and non- medical ex- above the country’s average wage level and subsidization penses in Ireland revealing the multidimensional nature is required. These studies did not capture financial chal- of the financial and economic burden cancer imposes on lenges unique to cervical cancer patients which is cur- patients and the whole family unit. Cervical cancer pa- rently the leading cause of morbidity and mortality tients incur out of pocket expenses as a result of their related to cancer among women in Kenya and more so condition. Longo et al. [8] explained that these out-of- western Kenya. Little literature exists to describe the fi- pocket costs are varied and might include: expenses dir- nancial challenges of cervical cancer patients in western ectly due to treatment (doctor’s fees); expenses related Kenya. An important purpose of this study was to deter- to treatment (travel costs, prescription, medication, mine financial challenges of cervical cancer patients with wigs); or more general expenses that are as a result of the aim of using this information to develop evidence having cancer (new clothes due to weight fluctuations, based interventions for managing care of cervical cancer different food or nutritional supplements due to the ef- patients in Kenya. fects of chemotherapy). In addition, some patients ex- The study was conducted at Jaramogi Oginga Odinga perience a reduction in income due to time taken away Teaching and Referral Hospital (JOOTRH) which is the from work because of the cancer or its treatment [9]. referral hospital for cancer patients in western part of Those with a low income are particularly vulnerable to Kenya. The total in-patient cervical cancer admissions in the adverse financial and economic effects of incurring 2014 and 2015 when the study was conducted were 681 out of pocket expenses [10]. and 735 respectively. The facility did not have special Being a cancer patient can lead to catastrophic ex- wards for adult cancer patients and therefore the female penses with several consequences including a reduction cancer patients were admitted in gynecological wards. in total household earnings due to family adjustments Other infrastructure that were available for cancer in- for the disease, having to cut-back on “extras” such as cluded: palliative care/ oncology unit and medical social social expenditure or holidays, sale of existing family as- department which helped in case the patients had social sets and having to borrow money. Moreover, it can also problems. Facilities available for management of cervical trigger non-financial consequences, such as financial cancer were cryotherapy and Loop Electrosurgical Exci- stress leading to psychological problems [11–14]. In the sion Procedure (LEEP) equipment. Radiotherapy ma- US more than 2 million cancer survivors did not get one chine was available but was not operational. The facility or more needed medical services because of financial did not have an oncologist, there were three palliative challenges, this was mainly seen among the Hispanic care nurses, a pathologist (mainly conducting biopsies) and black survivors [15]. Need for financial support to and gynecologists who staged cervical cancer and con- counter the loss of income of both cancer patient and ducted surgery where appropriate. The hospital offered family caregiver has been reported in several countries the following services for cervical cancer patients: in Africa [16, 17]. Masika et al. [16], reported financial screening, palliative care, chemotherapy, cryotherapy, challenges among cancer patients in Tanzania. However, conization and surgery. For other associated diagnostic their study did not explore the actual financial chal- and routine laboratory tests the patients would be re- lenges of cervical cancer patients. On the other hand ferred to the neighboring private facilities. Sepulveda et al. [17], in their study conducted in a couple of African countries (Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe) among Human Im- Methods munodeficiency Virus/ Acquired Immune Deficiency Study setting Syndrome (HIV/AIDS) and cancer patients, revealed The study was conducted at JOOTRH in Kisumu from needs for financial support to counter the loss of income September 2014 to February 2015. JOOTRH is a referral of both patient and family caregiver. Mostert et al. [18] hospital serving a catchment area with a population of studied contributors to abandonment of childhood can- more than 5 million people in more than 10 counties in cer treatment in Kenya and established financial burden the western region of Kenya. The hospital serves an area of cancer treatment and lack of insurance as one of the with some of the worst health indicators in the country important predictors to abandonment of treatment. including high prevalence of HIV infection (15.4%) Moreover, long distances to access diagnostic and treat- which is greater than twice that of the national (7.1%) ment services, lack of decentralized diagnostic and treat- prevalence [21]. JOOTRH is the referral hospital for can- ment facilities and a lack of better cancer policy cer patients in western part of Kenya. At the time of this development have been established as factors hindering study, total in-patient cervical cancer admissions were access to cancer treatment in Kenya [19]. According to 681 and 735 in 2014 and 2015 respectively. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 3 of 8 Study design administer the questionnaire to them. The partici- This was a hospital based cross-sectional descriptive pants answered the questionnaires by themselves ex- study. It involved collection of both quantitative and cept for some 21 (6.3%) who needed help and were qualitative data from cervical cancer patients seeking assisted by the researcher. care at JOOTRH. Two medical social workers were interviewed (see Additional file 2) by the researcher face to face and their Study participants responses were audio recorded and transcribed verbatim. The study participants consisted of cervical cancer pa- In-depth interview guide (see Additional file 3) was used tients who were over 18 years visiting JOOTRH or re- to collect qualitative data from 12 eligible patients by ferred to JOOTRH for further treatment or palliative the researcher. The patients were guided to narrate their care services. The eligible respondents were sourced story concerning their financial challenges during the from palliative care clinics, oncology unit, and obstetric disease trajectory. Both sessions took about 40 min each. and gynecological unit within JOOTRH. They were audio recorded and later transcribed verbatim and content analysis done and themes generated to en- Sampling Design rich quantitative data. Finally, the transcripts were The sampling strategy involved purposive sequential en- returned to the social workers and 7 patients (5 of them rolment of patients with histologically proven cervical had died) who were in agreement that the information cancer as they became available at the facility till the re- reflected their expressions. quired sample size was reached. Medical social workers were also purposively sampled for key informant inter- Data management and analysis view. The healthcare providers in charge of the patients Quantitative data was coded, edited and cleaned to and palliative care specialist helped identify patients based check for any errors and entered in Statistical Package on information in the patient files then referred them to for Social Scientists (SPSS) version 20 and presented in the researcher who confirmed their eligibility and pro- tables. Descriptive statistics and crosstabulations was ceeded to seek consent from each of them. This exercise done to analyze how cervical cancer patients differed in was done every day in the gynecological ward (ward 4) their financial challenges by their socio-demographic and in room 19/16 where cervical cancer screening, cryo- and clinical characteristics. therapy and LEEP was performed. Patients were also se- For qualitative data, the responses were transcribed lected on Tuesdays in the gynecological outpatient clinics verbatim; the content was then analyzed by searching (GOPC) where patients who were diagnosed at early stage for emerging themes on the financial challenges faced by were done for surgery. This was done until the desired cervical cancer patients. Qualitative data was presented sample size (334) was achieved. Participants for in-depth in textual form with verbatim reports alongside quantita- interviews were selected by the care providers based on tive data for illustrations. how long they had been symptomatically sick (at least more than one year) and consented to the study. Pilot sur- Results vey was conducted at the neighboring Kisumu East sub- Socio-Demographic and Clinical Characteristics of county hospital to test the study tools and improve their Respondents quality and efficiency. A total of 334 cervical cancer patients participated in the study. Those aged between 36 and 46 years were 114 Research Procedure (34%), with 93 (28%) aged between 18 and 35 years, 52 A structured questionnaire (see Additional file 1)was (16%) aged between 47 and 57, while 75 (22%) were aged administered to the recruited patients by the researcher 58 years and above. One hundred and seventy-eight and research assistants. The researcher liaised with the (53%) of the survey respondents were widowed, 104 relevant health care providers at the palliative care unit, (31%) were married, 31 (10%) divorced or separated obstetric/gynecological wards and on GOPC days which while only 21 (6%) were single. One seventy-nine (54%) were appropriate for identification of the eligible clients. of the respondents had primary level of education, 62 The researcher and the health care team worked out a (18%) had secondary education and 43 (13%) had no programme on how the researcher could access the education at all while only 50 (15%) had tertiary educa- respondents without putting any strain on the respon- tion. One twenty-nine (54%) of the respondents were at dents such as by keeping them longer in the facility. The cancer stage IV, 63 (19%) were at stage III, 52 (15%) at researcher also took contacts of clients who consented stage I and 40 (12%) were at stage II. Two hundred and to the study but were not able to respond to the ques- twenty-two (67%) of the respondents had not under- tionnaire at that time and made private arrangement taken routine screening for cervical cancer previously, with them on when and where it was convenient to while only 33% had been routinely screened. Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 4 of 8 Two hundred and seventeen (65%) respondents were management of cervical cancer patients revealed the diagnosed of cervical cancer in less than one-year period theme of inadequate resources. They stated that the fa- prior to the study while only 31 (9%) were diagnosed in cility had inadequate resources for managing cancer. For more than one year before the study. The rest of the pa- instance, the radiotherapy machine was not operational tients did not know when they were diagnosed. Two since it had broken down sometime back, there was lack hundred and nine (63%) of the respondents were Hu- of specialized diagnostic machines and oncologists, fi- man Immunodeficiency Virus (HIV) Positive while only nance allocated for palliative care and oncology unit was 73 (22%) were negative. The rest of the patients did not insufficient for supplies required. Due to these chal- know their HIV status. lenges the patients were forced to seek some diagnostic One fifty-nine (48%) respondents engaged in small tests in the private facilities which were very expensive scale farming whilst 145 (43%) were engaged in small for them. The care providers were forced to refer them scale business. Only 30 (9%) were formally employed. for treatment to other facilities far away such as KNH or One hundred and five (31%) of the patients received Mulago Hospital in Uganda hence escalating costs for blood transfusion and pain killers and 74 (22%) received them. Faced with such situations, most of the patients pain killers only. Most patients reported being put on just gave up treatment and went back home. antibiotics, haematemics for blood boosting and pain killing drugs such as aspirin, dichlophenac, brufen, intra- Health insurance cover musculine morphine and paracetamol. Thirty-two Three hundred and four (91%) of the cervical cancer pa- (10%) of the respondents received chemotherapy, hae- tients admitted and referred to JOOTRH did not have matemics 40 (12%), while only 11 (3%) of the respon- adequate insurance cover and only 30 (9%) had National dents received radiotherapy and chemotherapy. Thirty Hospital Insurance Fund cover which catered for only (9%) of the patients received surgery while 42 (13%) bed component of inpatient costs.This in most cases did were treated by LEEP. not include medication such as chemotherapy, painkiller (morphine) which patients were supposed to buy from Financial challenges of cervical cancer patients their out of pocket expenses. The key financial challenges from the study were costs of medication 291 (87%), cost of travel 281 (84%) and Financial assistance received by patients cost of diagnostic tests 250 (75%). Other costs incurred Results showed that no patient received any assistance by the patients were cost of cloths and wigs 91 (27%), from well-wishers. Only a few 43 (13%) received assist- and cost of home and child care 80 (24%). Table 1 shows ance from charity organizations such as (Tumaini la financial challenges experienced by patients. maisha health services, and Kenya Medical Research In- Further in-depth interviews with patients revealed the stitution- Center for Disease Control), 91 (27%) received theme of hygienic needs. Most patients incurred a lot of little assistance from friends, while 31 (9%) received little money in maintaining their personal hygiene. They assistance from colleagues. Some patients received a stated that keeping clean as a woman was a great chal- little assistance from relatives 32 (10%) and church 32 lenge that they were facing. Bleeding, discharge, and pus (10%). Table 2 illustrates the results. from their private parts really irritated them; in order to Further interview with a medical social worker re- keep somehow clean, they had to use pads, swabs and at vealed the theme of lack of reliable source of financial times medication or any substance that could counter assistance. He stated that patients did not receive sub- foul smell that emanated from their private parts. stantial assistance, from the hospital apart from waiver Key informant interviews with two medical social that very few needy cases could get to help offset their workers on the status of the facility as regards hospital bill. There was no charity organization that was targeting cervical cancer patients, the few who benefited from charity organizations ware actually HIV/AIDS Table 1 Financial challenges by cervical cancer patients clients on care whose cases were considered as compli- Variable Yes No Total cations of HIV. He expressed a feeling that cervical Cost of treatment 228 (68%) 106 (32%) 334 (100%) cancer patients needed similar concerted effort from Cost of medication 291 (87%) 43 (13%) 334 (100%) government and charity organizations in order for them Cost of home or child care 80 (24%) 254 (76%) 334 (100%) to manage their condition. Further inquiry revealed a theme of high cost of treat- Cost of clothes and wigs 91 (27%) 243 (73%) 334 (100%) ment. This meant that most of the patients were not Cost of diagnosis 250 (75%) 84 (25%) 334 (100%) able to cater for their treatment. He explained that most Travel costs 281 (84%) 53 (16%) 334 (100%) of the patients were poor and could not afford cancer Cost of nutritional supplements/ 217 (65%) 117 (35%) 334 (100%) treatment, most times they were referred for further Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 5 of 8 Table 2 Financial Assistance Sources of financial assistance None n (%) Little n (%) Moderate n (%) Substantial n (%) Friends 243 (73%) 91 (27%) 0 (%) 0 (%) Colleagues 303 (91%) 31 (9%) 0 (%) 0 (%) Relatives 84 (25%) 218 (65%) 32 (10%) 0 (%) Well-wishers 334 (100%) 0 (%) 0 (%) 0 (%) Charity Organizations 270 (81%) 43 (13%) 0 (%) 21 (6%) Church 136 (40%) 156 (47%) 32 (10%) 10 (3%) Key, None: Did not receive any financial assistance, Little: Received about 10% of total cost, Moderate: Received about 30% of total cost, Substantial: Received about 90% and above of total cost, well-wisher: A person who is not a friend, colleague or a church-mate to a cervical cancer patient, and not a member or affiliated to any charity organization but offers to give financial assistance to a patient. treatment to KNH or Uganda or at times told to buy Discussion drugs for chemotherapy but they could not afford. Some Results from this study revealed several financial chal- of them were abandoned in the hospital and stayed until lenges that cervical cancer patients experienced. Major- they were given waiver or died. Others went back home ity of the patients reported engaging in small scale when they could not meet costs of chemotherapy. farming and business with only a few in formal employ- In- depth interviews with patients further showed that ment, this implied low income status of the patients. most of the patients depended on their relatives, church Moreover, the patients did not have adequate medical members and their children for financial assistance most cover to relieve their financial burden. As a result, the of whom did not have any formal employment or steady patients largely needed financial support to enable them source of income. Hence the assistance was too little for meet costs of care. This agrees with. the need they had. Gitonga [20] who established that the total cost of breast cancer treatment at Kenyatta National Hospital (KNH) in Kenya is well above the country’s average wage Financial challenges by participants sociodemographic level and subsidization is required. The patients experi- and clinical characteristics enced challenges with their treatment in terms of cost A larger proportion of Cervical cancer stage IV respon- and access in that the treatment was unaffordable and dents experienced financial challenges as compared to inaccessible. Most patients could not go to KNH or other lower stages. For instance, cost of treatment was Mulago hospital in Uganda where they were referred for 146 (64%), cost of medication 168 (58%) and cost of treatment due to financial challenges. Cervical cancer diagnosis 158 (63%). Similarly, large proportion of patients also experienced financial challenges in acquisi- widows experienced financial challenges as compared to tion of nutritional supplements which they needed to other marital status. For instance, cost of treatment was boost their health status. Most patients incurred cost of 134 (59%), cost of medication 156 (54%) and cost of medication, travel and diagnostic tests. In contrast, fewer travel 167 (59%). HIV positive respondents bore dispro- patients incurred cost of cloths and wigs, and cost of portionate burden of financial challenges as seen in cost home and child care. This may be explained by the exist- of treatment 135 (59%), and cost of travel 177 (63%). Re- ence of strong extended family ties from which most pa- spondents who had formal employment experienced tients benefited by receiving free home and child care lowest proportion of financial challenges as seen in cost assistance. The fewer number of patients reporting in- of treatment 20 (9%), and cost of diagnosis 20 (8%). A curring costs of clothes and wigs can be explained by larger proportion of Participants who attained primary the fact that most patients in this study were not on level of education reported experiencing financial chal- treatment modalities that interfered with their body, lenges compared to other levels of education. For in- such as hair loss or increase in weight. Most patients stance, cost of treatment 136 (60%) and cost of diagnosis despite being in stage III& IV of the disease, were only 136 (54%). Similarly, larger proportion of respondents treated with blood transfusion, haematemics and pain who were treated by blood transfusion and pain killers killers. They may not have required clothes and wigs reported financial challenges than the rest of the treat- which are expenses associated with those who receive ment modalities. Ninety-four (41%) reported challenges chemotherapy and radiotherapy treatments. This concurs with cost of treatment while 94 (38%) reported chal- with Masika et al. [16] who also revealed that Tanzanian lenges with cost of diagnosis. While a smaller proportion cancer patients incurred a lot of costs such as medication, of insured participants experienced financial challenges travel, food, water, home and child care among others. compared to the non-insured as illustrated in Table 3. Despite the fact that most patients were poor and could Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 6 of 8 Table 3 Financial challenges by participants sociodemographic and clinical characteristics Characteristics Cost of Cost of Cost of home and Cost of clothes Cost of Cost of Cost of Nutritional N (%) treatment (%) Medication (%) childcare (%) and wigs (%) diagnosis (%) travel (%) supplements (%) Cancer stage I 0 41 (14) 0 0 10 (4) 42 (15) 30 (14) 52 (16) II 30 (13) 30 (10) 30 (38) 30 (33) 30 (12) 30 (11) 20 (9) 40 (12) III 52 (23) 52 (18) 10 (12) 10 (11) 52 (21) 52 (18) 42 (19) 63 (19) IV 146 (64) 168 (58) 40 (50) 51 (56) 158 (63) 157 (56) 125 (58) 179 (54) Marital status Married 73 (32) 94 (32) 20 (5) 31 (34) 84 (34) 83 (30) 73 (34) 104 (31) Divorced 10 (4) 20 (7) 10 (12) 10 (11) 10 (4) 20 (7) 20 (9) 31 (9) Widowed 134 (59) 156 (54) 50 (63) 50 (55) 135 (54) 167 (59) 114 (52) 178 (53) Single 11 (5) 21 (7) 0 0 21 (8) 11 (4) 10 (5) 21 (7) HIV Status Positive 135 (59) 177 (61) 50 (63) 50 (55) 136 (54) 177 (63) 124 (57) 209 (63) Negative 52 (23) 73 (25) 20 (25) 20 (22) 73 (29) 63 (22) 62 (29) 73 (22) Don’t now 41 (18) 41 (14) 10 (12) 21 (23) 41 (17) 41 (15) 31 (14) 52 (15) Income SC Farming 105 (46) 127 (44) 20 (25) 31 (34) 117 (47) 127 (45) 85 (39) 159 (48) SC Business 103 (45) 134 (46) 40 (50) 40 (44) 113 (45) 124 (44) 102 (47) 145 (43) Employed 20 (9) 30 (10) 20 (25) 20 (22) 20 (8) 30 (11) 30 (14) 30 (9) Education None 10 (4) 32 (11) 10 (13) 10 (11) 32 (13) 43 (16) 10 (5) 43 (13) Primary 136 (60) 147 (51) 30 (37) 41 (45) 136 (54) 147 (52) 95 (44) 179 (53) Secondary 52 (23) 62 (21) 20 (25) 20 (22) 52 (21) 51 (18) 62 (28) 62 (19) Tertiary 30 (13) 50 (17) 20 (25) 20 (22) 30 (12) 40 (14) 50 (23) 50 (15) Treatment Chemo 32 (14) 32 (11) 10 (11) 10 (11) 32 (13) 32 (11) 32 (15) 32 (10) Chemo+rad 11 (5) 11 (4) 0 0 11 (4) 11 (4) 11 (5) 11 (3) Surgery 20 (9) 20 (7) 20 (25) 20 (22) 20 (8) 20 (7) 10 (5) 30 (9) Bld tran+Pan k 94 (41) 94 (32) 0 11 (12) 94 (38) 94 (34) 63 (29) 105 (31) Pain killers 31 (14) 63 (21) 20 (25) 20 (22) 63 (25) 42 (15) 41 (19) 74 (22) Haematemics 40 (17) 40 (14) 30 (37) 30 (33) 30 (12) 40 (14) 40 (18) 40 (12) LEEP 0 31 (10) 0 0 0 42 (15) 20 (9) 42 (13) Insurance Yes 30 (13) 30 (10) 20 (25) 20 (22) 30 (12) 30 (10) 30 (14) 30 (9) No 198 (87) 261 (90) 60 (75) 71 (78) 220 (88) 251 (90) 187 (86) 304 (91) Total 228 (100) 291 (100) 80 (100) 91 (100) 250 (100) 281 (100) 217 (100) 334 (100) KEY Chemo: chemotherapy, Bld tran + Pan k: Blood transfusion and pain killers, Chemo + rad: chemotherapy and radiotherapy SC Farming: small scale farming, SC Business: small scale business hardly bear the costs, the patients expressed a need for study finding differs with Aniebue et al. [22], report on financial support to cater for these costs. Similarly, in- ethical, socioeconomic, and cultural considerations in gy- creasing demand for financial assistance and financial necologic cancer care in South Africa, which revealed that challenges among cancer patients have been reported in cancer treatment was free for patients who earn less than Ireland [3]. There is growing awareness that cancer can an established minimum income. The same report also have major financial impact on newly diagnosed patients, revealed that in India surgery, radiotherapy, and chemo- those living with the disease, and their families [4]. This therapy treatments were partially or totally subsidized by Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 7 of 8 government depending on a set minimum income level. but this could be corroborated by the actual observable Financial needs among cancer patients have also been re- experiences they faced. ported by Sepulveda et al. [17] in their study conducted in Based on the study findings, there exists numerous fi- a couple of African countries (Botswana, Ethiopia, nancial challenges that cervical cancer patients experience Tanzania, Uganda and Zimbabwe) on quality of care at in the regional facilities, these range from treatment, diag- the end of life among cancer patients. Similarly, Murray nosis, travel and personal maintenance challenges. et al. [23] and Masika et al. [16] also revealed need for fi- nancial support among cancer patients in Kenya and Conclusions Tanzania respectively. Other international studies have This study reveals that cervical cancer patients experi- also shown increasing need for financial assistance among ence numerous financial challenges and there is a need cancer patients [4–6]. for the health care system to develop mechanisms for From the qualitative interviews it was evident that most supporting them especially patients in cancer stage IV, patients were poor and could not afford treatment, this widows, HIV positive patients and those with low educa- made some of them to abandon treatment and go back tion as they bore the largest brunt of financial chal- home while others just stayed in the ward with minimal lenges. The government should increase budgetary treatment till they succumbed. This agrees with Mostert allocation for cancer management and explore modal- et al. [18] who studied contributors to abandonment of ities of subsidizing cervical cancer treatment to enable childhood cancer treatment in Kenya and established finan- most patients to afford. The wider society also need to cial burden of cancer treatment and lack of insurances as be sensitized to offer support to members of the society one of the important predictors to abandonment of treat- suffering from life threatening diseases such as cervical ment. Similarly, in the US more than 2 million cancer survi- cancer among them. Patients should be screened for fi- vors did not get one or more needed medical services nancial challenges and its impact on their quality of life because of financial concerns this was mainly seen among assessed. Finally, more studies should be done focusing theHispanicand black survivors[15]. Duetouniquenature on actual costs incurred by cervical cancer patients. and symptoms of cervical cancer which includes constant bleeding and discharge from vagina, the patients also faced Additional files challenges with maintaining personal hygiene which led to increased financial needs. This concurs with Timmons et al. Additional file 1: Questionnaire for Cervical Cancer Patients. Perception [7] who noted that patients incurred a wide range of add- of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi itional cancer related medical and non- medical expenses in Oginga Odinga Teaching and Referral Hospital in Western Kenya. Socio- Demographics and health history of cervical cancer patients that Ireland revealing the multidimensional nature of the finan- is presented in this paper. Financial challenges of cervical cancer patients cial and economic burden cancer imposes on patients. that is presented in this paper. Health insurance cover status of cervical This study also exposed resource-based challenges cancer patients that is presented in this paper. Sources of financial assistance for cervical cancer patients that is presented in this paper. such as lack of radiotherapy and diagnostic machines, Other data not presented in this paper: Patient Care and informational lack of oncologist and inadequate supplies for palliative needs. Spiritual needs of cervical cancer patients. (DOCX 36 kb) care. This concurs with Louise et al. [19] who also re- Additional file 2: Interview Guide for Healthcare Providers. Perception ported lack of decentralized diagnostic and treatment fa- of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi Oginga Odinga Teaching and Referral Hospital in Western Kenya. Physical cilities and a lack of better cancer policy as factors and material needs of cervical cancer patients -Entails financial hindering access to cancer treatment in Kenya. challenges, financial assistance and health insurance cover that is Further analysis of financial challenges by participants presented in this paper. Other data not presented in this paper: Biographical information of health care providers. Psychosocial characteristics showed that patients who were at cancer needs of cervical cancer patients. Informational needs of cervical stage IV, widows, HIV positive patients and those with cancer patients. (DOCX 16 kb) lower education bore disproportionate burden of finan- Additional file 3: In-Depth Interview Guide for Cervical Cancer Patients. cial challenges. Perception of Cervical Cancer Patients on their Palliative Care Needs at Jaramogi Oginga Odinga Teaching and Referral Hospital in Western This study was limited to cervical cancer patients seek- Kenya. Physical and material needs of cervical cancer patients- Entails ing care at JOOTRH, this would mean that patients who financial challenges, financial assistance and health insurance cover that were sick at home and could not access care at the hos- is presented in this paper. Other data not presented in this paper: Psychosocial needs of cervical cancer patients. Informational needs of pital were left out. Such patients may be experiencing cervical cancer patients. Additional concerns of cervical cancer patients. worse financial challenges but given that JOOTRH is a (DOCX 17 kb) public hospital which is generally not so costly and has a waiver system for extremely needy patients, the patient Abbreviations population was deemed representative. Similarly, pa- GOPC: Gynecological out-patient clinic; HIV/AIDS: Human Immunodeficiency tients may have exaggerated their financial challenges Virus/ Acquired Immune Deficiency Syndrome; JOOTRH: Jaramogi Oginga with the hope that they would receive some assistance Odinga Teaching and Referral Hospital; KNH: Kenyatta National Hospital; Owenga and Nyambedha BMC Health Services Research (2018) 18:261 Page 8 of 8 LEEP: Loop Electrosurgical Excision Procedure; SPSS: Statistical Package for 8. Longo CJ, Deber R, Fitch M, Williams AP, D'Souza D. An examination of Social Scientists cancer patients’ monthly ‘out-of-pocket’ costs in Ontario, Canada. Eur J Cancer Care (Engl). 2007;16(6):500–7. 9. Bennett JA, Brown P, Cameron L, Whitehead LC, Porter D, McPherson KM. Acknowledgements Changes in employment and household income during the 24 months We are indebted to cervical cancer patients in Western Kenya, the research following a cancer diagnosis. Support Care Cancer. 2009;17(8):1057–64. assistants for data collection and JOOTRH staff for their assistance. 10. Arozullah AM, Calhoun EA, Wolf M, Finley DK, Fitzner KA, Heckinger EA, Gorby NS, Schumock GT, Bennett CL. The financial burden of cancer: Funding estimates from a study of insured women with breast cancer. J Support This work was supported by kind contributions from family members. Oncol. 2004;2(3):271–8. 11. Chapple A, Ziebland S, McPherson A, Summerton N. Lung cancer patients’ Availability of data and materials perceptions of access to financial benefits: a qualitative study. Br J Gen The authors wish not to make the data public since respondents were Pract. 2004;54(505):589–94. guaranteed confidentiality of information during data collection. 12. Chirikos TN, Russell-Jacobs A, Cantor AB. Indirect economic effects of long- term breast cancer survival. Cancer Pract. 2002;10(5):248–55. Authors’ contributions 13. Dockerty JD, Skegg DC, Williams SM. Economic effects of childhood cancer JAO designed, carried out the survey study at JOOTRH, managed and on families. J Paediatr Child Health. 2003;39(4):254–8. analyzed data and participated in the drafting of the manuscript. EON 14. Finocchiaro CY, Petruzzi A, Lamperti E, Botturi A, Gaviani P, Silvani A, Sarno gave guidance in designing the study, data analysis and drafting of the L, Salmaggi A. The burden of brain tumor: a single-institution study on manuscript. Both authors read and approved the final manuscript. psychological patterns in caregivers. J Neuro-Oncol. 2012;107(1):175–81. 15. Weaver KE, Rowland JH, Bellizzi KM, Noreen MA. Forgoing Medical Care because of Cost: Assessing Disparities in Health Care Access among Cancer Ethics approval and consent to participate Survivors living in the United States. Cancer. 2010;116(14):3493–504. Ethical clearance was obtained from Jaramogi Oginga Odinga Teaching and 16. Masika GM, Wettergren L, Kohi TW, von Essen L. Health-related quality of life Referral Hospital Ethical Review Board, reference number- (ERC.1B/VOL.1/135). and needs of care and support of adult Tanzanians with cancer: a mixed- The nature and purpose of the study was explained to the potential methods study. Health Qual Life Outcomes. 2012;10:133. participants verbally and in writing (if the patient could read) to enable 17. Sepulveda C, Habiyambere V, Amandua J, Borok M, Kikule E, Mudanga B, them make informed consent as a basis for enrollment. Participation was Ngoma T, Solomon B. Quality care at the end of life in Africa. BMJ. 2003; voluntary, confidentiality anonymity was guaranteed. Individual written 327(7408):209–13. consent was obtained from each participant before being enrolled into 18. Mostert S, Njuguna F, Langat SC, Slot AJ, Skiles J, Sitaresmi MN, van de Ven PM, the study. Patients who were unable to write were asked to sign through thumb Musimbi J, Vreeman RC, Kaspers GJ. Two overlooked contributors to print. abandonment of childhood cancer treatment in Kenya: parents’ social network and experiences with hospital retention policies. Psychooncology. 2014;23(6): Consent for publication 700–7. https://doi.org/10.1002/pon.3571. This is not applicable in this study since the authors’ maintained anonymity 19. Makau-Barasa LK, Sandra BG, Othieno A, Stephanie W, Asheley S, Bennett during data collection and management. No specific individual’s details are AV. Improving Access to Cancer Testing and Treatment in Kenya. Journal of presented in this work. Global Oncology. 2017. https://doi.org/10.1200/JGO.2017.010124. 20. Gitonga SN. The Cost Burden of Breast Cancer Treatment at Kenyatta Competing interests National Hospital: A Patient’s Perspective: Nairobi University Repository; The authors declare that they have no competing interests. 2015. U51/69344/2013. 21. Inzaule S, Otieno J, Kalyango J, Nafisa L, Kabugo C, Nalusiba J, Kwaro D, Zeh C, Karamagi C. Incidence and predictors of first line antiretroviral regimen Publisher’sNote modification in western Kenya. PLoS One. 2014;9(4):93106. Springer Nature remains neutral with regard to jurisdictional claims in published 22. Aniebue UU, Tonia CO. Ethical, Socioeconomic, and Cultural Considerations maps and institutional affiliations. in Gynecologic Cancer Care in Developing Countries. International Journal of Palliative Care. 2014;2014(2014):6. Author details 23. Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed Jaramogi Oginga Odinga University of Science and Technology, P.O and developing countries: lessons from two qualitative interview studies of Box.210-40601, Bondo, Kenya. Department of Sociology and Anthropology, patients and their carers. BMJ. 2003;326(7385):368. Maseno University, Private Bag, Maseno, Kenya. Received: 3 November 2016 Accepted: 28 March 2018 References 1. Globocan. International Agency for Research in Cancer. France: WHO; 2012. 2. 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