Introduction

According to the Pan American Health Organization (PAHO), costs related to chronic non-communicable diseases (NCDs) have been rising in recent years, both for health systems and for businesses and individuals. Governments, communities and private companies are also affected by the costs of treatment and care for patients with NCDs, as well as by their premature death and disability ¹. This poses a significant risk of economic loss to health systems, as well as a decrease in life expectancy and quality of life of individuals ².

Moreover, the economic burden of the four major chronic NCDs - cardiovascular disease, cancer, diabetes, and chronic respiratory disease- is high. In a PAHO report, the cumulative loss of GDP for the period 2006-2015 due to heart disease, stroke, and diabetes in Mexico, Argentina, Brazil, and Colombia was estimated at US $13.54 billion ¹.

In Colombia, NCDs are very costly because of their difficulty in diagnosis and treatment, which are long and complex. This affects, in particular, the economically active population ³. As NCDs are long-term diseases, these bring about a demand for direct and indirect costs. According to the Observatory on Quality of Health Care, direct medical costs include medicines, diagnostic tests, health infrastructure, health personnel, and medical equipment. Direct non-medical costs involve expenditures made outside the health system such as patient transportation, the cost of informal care or other expenses borne by the patient ⁴.

Indirect costs are derived from the concept of human capital and their calculation includes estimates of the loss in productivity and income due to mortality and disability ^3,4.

NCDs directly affect the individual who suffers them and their family due to the economic impact of the decrease in per capita income, which depends on the duration and severity of the disease that entails the incapacity (or the decrease in the temporary or permanent capacity to work), the costs of treatment and transport, among others ⁵.

In general, research addresses direct costs related to health care and out-of-pocket expenditure or expenses directly borne by patients since neither public nor private insurance covers the full costs of health goods or services. The ability of countries to estimate private spending on long-term care varies widely. Household final consumption expenditure covers all purchases made by households to meet their daily needs such as food, clothing, rental housing or health services ⁶. Thus, this study provides a complete estimate of NCDs related costs in the family context by aiming to determine the direct and indirect non-medical costs of caring for patients with NCDs.

Materials and Methods

A quantitative descriptive cross-sectional study was conducted. The sample was made up of adults with chronic NCDs and their caregivers from three hospitals located in the metropolitan area of Bucaramanga, Colombia, who were selected through systematic sampling. The sample size was calculated based on a 95 % confidence interval, 5 % error margin and a variance of 500. 10 % was also added due to possible loss or incomplete information. Thus, the total sample size was 77 patient-caregiver dyads.

The selection criteria were adults with NCDs of at least six months of duration, having a family caregiver during that minimum time, who had received inpatient and outpatient care services from two second-level hospitals located in the cities of Bucaramanga and Floridablanca, and a third-level hospital in Bucaramanga, Colombia. The exclusion criteria were people with neurological or cognitive disabilities that could prevent the provision of reliable information. The information was collected between February 2018 and May 2019.

The patients who met the selection criteria were firstly identified, for which the informed consent was filled in and the instrument for information collection was applied later. The latter consisted of two surveys: 1) Characterization of the patient with chronic disease and caregiver dyad, designed by the Care Group for Chronic Patients and their Families from the Nursing School of the Universidad Nacional de Colombia ⁷; and 2) Financial cost of care for chronic diseases, which explores the actual effective monthly consumption and the family impact of caring for a person with NCDs, developed by Montoya et al ⁸.

The evaluated variables were grouped into three sections, as follows:

1. Sociodemographic characteristics of the patient and caregiver

Sex, age, neighborhood, family group, schooling, occupation, marital status, religion, PULSES functional assessment scale (the scale assesses: P = Physical Condition, U = Upper Extremities, L = Lower Extremities, S = Sensory Function, E = Excretory Function, S = Social and Mental Status) ⁹, mental state examination using the Pfeiffer’s Short Portable Mental Status Questionnaire (SPMSQ) ¹⁰, Zarit Caregiver Burden Interview ¹¹, clinical diagnosis, duration of illness, sole caregiver, number of hours of care, level of psychological, family, religious, economic, social and IT support.

2. Direct costs

Actual effective consumption attributable to care for patients with NCDs:

3. Indirect costs

Loss of labor productivity by quantifying the paid time and income of the patient and family caregiver before and after becoming ill.

The data was double-entered and validated in EpiData 3.1 ¹², then analyzed in Stata 14.0. ¹³. First, proportions were calculated for qualitative variables and the distribution of quantitative variables was evaluated using the Shapiro-Wilk test. Measures of central tendency were calculated according to their normal distribution, using mean and standard deviation for the variables of family financial burden attributable to the care of a person with NCDs.

Regarding ethical aspects, the guidelines for biomedical research adopted by the Council for International Organizations of Medical Sciences (CIOMS) ¹⁴ and the standards established by the Colombian Ministry of Health in Resolution 8430 of October 4, 1993 were considered ¹⁵. Written consent was obtained from patients and caregivers. The research was approved by the ethics committees of the University (Act CBU-006) and the participants’ healthcare institutions. The protection of personal data was carried out in accordance with Decree 1377 of 2013 ¹⁶, which regulated Law 1581 of 2012 of Colombia.

Results

Sociodemographic characteristics of the patient and family caregiver are described in Table 1. As for the characterization of patients, more than half were women (55 %) at an average age of 70 living in urban areas (94 %), classified as socioeconomic stratum two (52 %), with four people on average in their family group, primary education level attained (84 %), mainly dedicated to household chores (51 %), married (34 %), Catholic (82 %), with a PULSES score between 12 and 24 (51 %) - that is, with high dysfunctionality or dependency - and a score of 3-4 in the SPMSQ test, that is, with mild cognitive impairment (30 %). The predominant diagnostic group of patients was the cardiovascular group (45 %), with an average illness duration of 118 months (9.8 years). In addition, they have low self-perception of family burden (36 %), sole caregiver (56 %) and require an average of 13.8 hours of care per day. Regarding the perceived support, the majority report having no psychological support (32 %), a high level of family (42 %) and religious (35 %) support, a moderate level of economic and social support and a low level of IT support for their care (83 %).

As for the characterization of caregivers, approximately four out of five were women (78 %) at an average age of 42.8 living in urban areas (94 %), classified as socioeconomic stratum two (44 %), with four people on average in their family group, primary education level attained (47 %), mainly dedicated to household chores (44 %), single (35 %), Catholic (78 %), with a PULSES score between 6 and 8 (49 %) - that is, low dependency - and a score of 0-2 in the SPMSQ test (75 %), that is, with normal mental functioning. One out of five caregivers had a chronic illness, having an average duration of 55.9 months (4.6 years).

Regarding the care of patients with NCDs, they considered care as a high burden for the family (42 %), most had only one caregiver (56 %) and dedicated an average of 13.4 hours of care per day. Regarding the perceived support, the majority report having no psychological support (36 %), a high level of family support (35 %), a moderate level of religious (38 %), economic (40 %) and social (38 %) support and IT support for care (49 %).

Regarding direct non-medical costs or actual costs attributable to the care of patients with chronic diseases, Table 2 shows the breakdown of costs in COP by expenditure type related to housing, health, transportation, communication, goods and services, and debts, both the total cost for the family and per patient. The biggest household expenditure is food (461,623 pesos), utilities and services (167,418), personal care products (147,610) and transport (106,546). 40 % of families pay an average of 445,645 pesos in rent. The most significant expenses are food in 64 % of families amounting to 169,796 pesos; public transport in 68 % of families amounting to 39,942 pesos; personal care and hygiene products in 42 % of families amounting to 35,531 pesos; administrative procedures in 86 % of families amounting to 24,318 pesos; and patient visits in 67 % of families amounting to 20,313 pesos.

With regard to monthly health-related expenses borne by the family or out-of-pocket expenses, 17 % of families pay contributions for patient healthcare affiliation (97,254 pesos); 30 % spend on HBP medicines (28,600); 16 % on non-HBP medicines (42,408); 10 % on nursing services (157,375); 19 % on complementary services (66,200); 4 % on alternative medicine (96,667); and 6 % on therapeutic devices (103,000). In addition, 22 % of families pay EPS contributions to caregivers amounting to 95,647 pesos. In addition, 31 % of the families incurred an average of 2,166,667 pesos in debt due to the patient’s illness and pay 90,417 pesos in monthly interest.

Table 3 shows the average costs for families and patients grouped by expenditure type. From the total value of food, housing, transport, and communication for the family, 23, 10, 29 and 9 %, respectively, are attributable to patient care. The total monthly cost for patient care was on average 324,207 COP per family. Additionally, when converting this variable into quartiles, the distribution of ranges was between 10,000 and 150,000; 150,001 and 225,000; 225,001 and 382,900; and 382,901 and 2,030,002.

In addition, 44 % of the families have concerns about the financial burden of caring for a chronically ill patient and 19 % report that there have been conflicts over the finances of caring for the ill person. The main reason is insufficient money in 67 % of cases. The sick person used to take over the finances in 43 % of households. 6 % reported that they had to sell goods or properties (jewelry, motorbikes, houses) to cover the cost of care. In half of the cases, their children assume the costs of family care.

In addition, indirect costs were evaluated in 38 dyads (collected in 2019), as shown in Table 4. 15 patients (38.5 %) did not engage in any paid economic activity and the remaining 23 patients (60.5 %) worked an average of 8 hours per day, earning 747,826 pesos per month (slightly less than the current legal minimum wage [SMLV]) before becoming ill. Among the latter group, after becoming ill, 12 (52 %) patients stopped working, and the 11 (48 %) patients who continued to work, their working hours and income were reduced to 4 hours (50 %) and 500,000 pesos (33 %), respectively.

As for caregivers, 29 were engaged in any remunerated economic activity. They used to work an average of 10 hours a day and earned 1,007,924 pesos per month. When they undertook the care of their family member, these working hours decreased to 8 and their income to 950,690 pesos (6 %).

Discussion

Conclusions

Costs related to the care of chronically ill patients were estimated at 324,207 Colombian pesos per family in this article. The most significant costs were health, food, housing, and transportation, affecting family dynamics as they face not only an increase in costs but also a decrease in income. This is because, in half of the cases, the person being cared for was responsible for household finances: 60 % used to work before they became ill and half of them stopped working after they became ill. The other half had a reduction by 33 % in their income. In the case of caregivers, this reduction was by 6 %, which perpetuates the patterns of intergenerational poverty and health inequity.

Therefore, the need to continue to generate evidence at regional and national levels on the effect of NCDs on social and economic development, as well as to assess the costs and benefits of applying prevention and control measures in specific contexts according to the country and the frequency of NCDs on socio-economic inequalities is important ¹⁸. In particular, it is essential to analyze information that is difficult to obtain such as the costs of accessing healthcare services provided by informal caregivers and the potential income of both patients and unpaid caregivers ²⁶.