Study population
This study utilizes data from a cross-sectional study conducted at INCAN that aimed to understand the pathways to care for cervical cancer. The study recruited women seeking cervical cancer care and their companions. Women were eligible for the study if they were (i) currently seeking cervical cancer treatment at INCAN; (ii) over the age of 18; and (iii) spoke Spanish or were accompanied by someone who could act as a translator. Companions were eligible for the study if they (i) were accompanying an individual with cervical cancer seeking treatment at INCAN who had consented to participate in the study; (ii) over the age of 18; and (iii) spoke Spanish.
Data collection
Women were recruited from July 24th to September 1st, 2017. Participants were recruited from the outpatient clinic for gynecologic and breast cancers, the inpatient and outpatient radiotherapy departments, and the outpatient chemotherapy department. Participants received 40 Quetzales (approximately 5.20 USD) as compensation for their time participating in the study.
Two trained interviewers fluent in Spanish administered surveys on tablets using the Qualtrics offline application. Patients and their companions were administered surveys separately and surveys were tailored to the participant (i.e., patient or companion-specific survey). Questions were read aloud to participants and entered into Qualtrics by study personnel. All answers were self-reported.
Measures and Analysis
Patient survey
The patient survey consisted of 113 questions that took approximately 30 to 60 minutes to complete. The survey included questions on the participant’s demographics, access to healthcare, cervical cancer screening and treatment history, knowledge of cervical cancer and HPV, barriers to seeking treatment, and the patient’s social support network. The survey utilized validated questions from a 2017 survey in Guatemala developed Gottschlich et al.[13] as well as the breast module of the Cancer Awareness Measure, adapted to the Guatemalan cervical cancer population. [8]
Primary outcomes for the patient survey included relationship with main source of support, with whom patient first disclosed diagnosis, and relationship with individual who encouraged patient to see a doctor were assessed. These questions had the response options daughter, spouse/partner, son, mother, father, sister, brother, aunt, uncle, male friend, female friend, a member of their religious community, and other. Due to small cell sizes, all responses except for spouse/partner, mother, son, and daughter were recategorized as “other”. Daughter-in-laws were categorized as daughter in both the patient and companion survey data.
Data related to questions regarding to the demographics and cancer characteristics of women seeking cervical cancer care such as age, ethnicity, native language, education, literacy, income, marital status, number of children, travel time to appointment, cancer stage, time since diagnosis, time between symptoms and seeking care, and sought out screening because felt sick were also summarized. To confirm cancer stage, we extracted all available medical charts for participants.
Companion survey
The companion survey consisted of 52 questions and took approximately 15 minutes to complete. The survey included questions on the companion’s demographics, relationship to the patient, and the impact of cervical cancer treatment on the patient and family, including the companion.
Primary outcomes were what activities the companion missed to attend the appointment (income earning activities, caring for an elderly relative, caring for children, housework, social activities, religious activities, school), number of previous visits by companion to INCAN, and amount of time typically spent at INCAN by companion. Companions also reported who fulfils the major roles of the patients when she is seeking treatment, and which individuals were most impacted by the woman’s cervical cancer diagnosis (daughter, spouse/partner, son, mother, father, sister, brother, aunt, uncle, male friend, female friend, and other).
Data related to questions from the companion’s survey including language, relationship, distance travelled from outside Guatemala City, anticipated number of days attending treatment appointments with your companion, accommodation, and transportation were also summarized.
Analysis
All data was analyzed using R 4.0.5.[30] Descriptive statistics were calculated using counts and frequencies. After investigating the primary outcomes from the companion survey, the dataset was subset to only include daughters and the analyses were rerun.
Ethics
Ethical approval was obtained from the University of Michigan (IRB# HUM00127150, INCAN, and the Institute of Nutrition of Central America and Panama (CIE-REV 069/2017). All study participants provided written informed consent.