Abstract
Background
In September 2017, hurricanes Irma and Maria affected Puerto Rico (PR) and the US Virgin Islands (USVI), causing major disruptions in basic services and health care. This study documented the stressors and experiences of patients with gynecologic cancer receiving oncology care in PR following these hurricanes.
Methods
We conducted 4 focus groups (December 2018-April 2019) among women aged ≥21 years from PR who were diagnosed with gynecological cancer between September 2016 and September 2018 (n = 24). Using the same eligibility criteria, we also interviewed patients from the USVI (n = 2) who were treated in PR. We also conducted key-informant interviews with oncology care providers and administrators (n = 23) serving gynecologic cancer patients in PR. Discussions were audio-recorded, transcribed verbatim, and coded to identify emergent themes using a constant comparison method.
Results
Analyses of focus group discussions and interviews allowed us to identify the following emergent themes: 1) disruptions in oncology care were common; 2) communication between oncology providers and patients was challenging before and after the hurricanes hit; 3) patient resilience was key to resume care; and 4) local communities provided much-needed social support and resources.
Conclusions
This study provides firsthand information about the disruptions in oncology care experienced by and the resiliency of women with gynecologic cancer following hurricanes Irma and Maria. Our findings underscore the need to incorporate oncology care in the preparedness and response plans of communities, health systems, and government agencies to maintain adequate care for cancer patients during and after disasters such as hurricanes.
Introduction
On September 6, 2017, Hurricane Irma hit the northeast region of Puerto Rico (PR) as a category 5 storm, leaving over 1 million residents without electricity. 1 Two weeks later, Hurricane Maria made landfall. The category 4 hurricane hammered PR with sustained winds of 155 miles/hour for almost 30 hours and left areas with as much as 35 inches of rain and 100% of PR without electricity.2,3 Hurricane Maria became the third costliest storm in U.S. history, seriously affecting or completely destroying 472 000 homes. 3 For weeks, or even months in some areas, potable water was scarce, or under boiling alert, telephone communications were lost, roads were blocked with debris or landslides, and many families were isolated because of collapsed bridges. 4 Thousands of people were evacuated from their homes to shelters elsewhere on the island, and ≥200 000 Puerto Ricans were relocated to the continental US. 5 Studies estimate the excess mortality from Hurricane Maria in PR between 1085 and 4645 deaths.6,7
The health care system in PR was also severely impacted.4,8-11 Only a handful of the 69 hospitals on the island were operational within the first weeks after Hurricane Maria made landfall. 8 The medical facilities that did not suffer substantial infrastructure damage continued offering limited services with power generators.8-10 In addition, medical staff, patients, and suppliers had difficulty getting to the hospitals because of the severely damaged roads on the island. Since most communication systems were not functioning, neither hospitals, medical staff, nor patients could communicate with one another.4,8 Many smaller clinics, pharmacies, and laboratories were down for months or never opened again. 8 Several recent reports have described the island-wide disruptions these hurricanes had on dialysis services, 10 organ donation and transplants, 12 immunizations, 13 and delivery of prescription medications. 14 Both hurricanes also caused major damages to the health care system in the neighboring territory of the U.S. Virgin Islands (USVI) 15 ; whose population also receives care in PR.
Patients undergoing cancer treatment are among the most vulnerable populations following a hurricane, given the disruptions in care delivery.16-18 In PR, cancer is the leading cause of death, and gynecologic cancers represent more than 15% of all new cancers diagnosed. 19 A study from the American Society for Radiation Oncology (ASTRO) found that 7 of 18 radiation oncology clinics in PR were reachable after hurricane Maria and they were only treating between 20% and 50% of their patients. 20 Those numbers are alarming because patients with gynecologic cancer receiving radiotherapy have a 10% chance of treatment failure if they miss 2 or more treatments during a 4-week radiotherapy course. 21
As hurricanes are increasing in both frequency and magnitude, 22 it is critical to better understand the impact of hurricanes on cancer care. Such information would help health care administrators, oncologists, and patients to prepare and adopt plans to mitigate the potential impact of future storms on oncology care. This is especially important for gynecologic cancer as it represents a large number of female cancers in PR and the USVI. The objective of the present study was to document the stressors and experiences of patients with gynecologic cancer regarding their oncology care in the aftermath of hurricanes Irma and Maria. To meet our objective and have a broad perspective on the issue, we interviewed gynecologic cancer patients and oncology care providers and administrators.
Methods
Recruitment and Data Collection: Gynecologic Cancer Patients
In 2018, we partnered with 4 oncology clinics from various regions in PR to identify potential study participants. Eligibility criteria included women aged ≥21 years from PR or the USVI who were diagnosed between September 2016 to September 2018 with any of the following gynecologic cancers, based on the International Classification of Diseases for Oncology, third edition (ICD-O-3) codes: vulva (C51), vagina (C52), cervix uteri (C53), corpus uteri (C54), uterus, NOS (C55), ovary (C56), or other unspecified female genital organs (C57). Collaborating physicians from these clinics presented the study to 34 women, of which 3 were not interested. Then, the clinics provided the contact information of the 31 eligible women to the study coordinator, who then contacted them by phone to invite them to the focus groups. Among these women, 24 (response rate: 77%) agreed to participate.
We conducted 4 focus groups from December 2018 through April 2019. Two groups were conducted in San Juan, the capital city of PR (the northeast region of the island); one with publicly insured patients (n = 6) and another with those privately insured (n = 6). The other 2 groups were conducted with a mix of privately and publicly insured patients in Mayaguez (west region; n = 7) and Ponce (south region; n = 5). Group discussions were held at the 4 partnering oncology clinics as these locations were accessible to and well known by the study participants. Two patients from the USVI, who received oncology care in PR, were also interviewed individually through the phone given that they were in the USVI at the time of this study.
Interview Questions from Focus Groups and Interviews with Gynecologic Cancer Patients.
Recruitment and Data Collection: Oncology Care Providers and Administrators
We conducted key-informant interviews from December 2018 through April 2019. Participants were a range of oncology care providers and administrators (n = 23) who provide services to women with gynecologic cancers in PR, including oncologists, radiotherapists, pharmacists, hospital administrators, and representatives from government agencies and nonprofit organizations (eg, Department of Health, Office of the Patient Advocate, Cancer Control Coalition, the American Cancer Society). Similar to interviews with patients, the study team developed a semi-structured interview guide based on the literature16,23 and the researchers’ awareness of the needs and experiences of providers and organizations serving gynecologic cancer patients. Of note, the study team held quarterly meetings with a community-clinical advisory board to inform this project. Prior to starting the interviews, the study coordinator described the study and obtained informed consent from participants. Interviews took place in person or over the phone, ranged from 30 to 45 minutes in length, and were audio-recorded. The present study focuses on questions regarding problems encountered in their health care settings or organizations in the aftermath of hurricanes Irma and Maria, including damaged infrastructure, lack of electricity and potable water, issues with electronic medical record or communication systems, and challenges in providing services and strategies used to address them. These topics correspond to the questions asked to gynecologic cancer patients (Table 1). Additional details about our methodology are available elsewhere, including a report on environmental stressors experienced by gynecologic cancer patients and oncology care providers and administrators. 24 The Institutional Review Board of the University of Puerto Rico Medical Sciences Campus approved the study protocol (#A1810418 approved on August 30, 2018), including the qualitative work involving both gynecologic cancer patients and oncology care providers and administrators.
Qualitative Data Analysis
A bilingual professional transcriptionist transcribed focus group discussions and interviews that were entered into Atlas.ti for analysis. All study team members received 8 hours of training on qualitative data analyses and coding using Atlas.ti software before analyses. Six coders worked in pairs to read and code transcripts using a constant comparison method, consistent with the grounded theory approach. 25 Coders used a thematic codebook for their coding assignments, which PML and MR developed with input from EAP, a qualitative research expert. The codebook was tested with an initial set of transcripts and refined with emerging topics. Transcripts were coded in Atlas.ti by reading the data line-by-line to identify concepts within each statement. Each data section was labeled according to the concept(s) in the transcript with a brief code and then used to create a new tree node. Repetitions of the same idea were coded to the same node, creating a list of recurring ideas. As coding developed and themes emerged, nodes were arranged in groups under a parent node labeled with the theme. The data classification and coding process under-identified themes involved building both categories (parent) and subcategories, which expanded as the review focus groups progressed. Beyond this stage, themes were collated into broader groups. An open coding was used when emerging topics were identified. We employed established methods for solving differences in coding themes by reconciling such discrepancies through group discussions and consensus. 25 While we did not quantify the codes as this may provide skewed data (eg, one woman may mention the same theme many times), we indicated the potential frequency of themes using qualitative descriptors (eg, majority, several, few) when refering to all participants. The present qualitative work is part of a larger mixed methods study assessing the impact of hurricane-related stressors and responses on oncology care and health outcomes of women with gynecologic cancers.
Results
Characteristics of Study Participants.
Theme 1: Disruptions in Oncology Care Were Common
Example Quotes from Oncology Care Providers and Administrators.
Theme 2: Communication Between Oncology Providers and Patients Was Challenging Before and After the Hurricanes Hit
The majority of patients expressed that, before Hurricane Maria hit, their oncology care providers had no plan in place to communicate with them to ensure continuity of care. In advance of the anticipated onset of Hurricane Maria, one woman remembered being contacted by her provider and receiving vague information, “When they canceled my radiotherapy, they only told me that if I was feeling sick, that I could go to the emergency room for anything.” During the hurricane warning period, another patient recalled, “I did not receive any information on how I was going to continue with my treatment or a contingency plan from my doctor’s office.” No patient from PR in our study mentioned receiving a copy of their last history of exams, regimen order summary, or lab results. In the aftermath, contacting clinics proved to be mostly useless because most telecommunication systems in the island were down. All patients agreed that cell phone service was spotty at best. Many patients remembered walking or driving to the few communication antennae towers left standing or climbing on their roofs to call their oncology clinics. However, they could not do so; one woman said, “The cell phone signal strength was horrible, and I had to climb on the roof of my house to get a little bit of signal to call the clinic. As soon as it got some signal, I lost it.” Providers and administrators also mentioned that the island’s telecommunication systems were down for many weeks but they tried multiple mechanisms to communicate with their patients including radio and television interviews, social media, and getting satellite-operated emergency telephones (Table 3).
Theme 3: Patient Resilience Was Key to Resume Care
Most patients expressed that they felt relatively well prepared for hurricanes Irma and Maria because, as one participant expressed, “we get hurricane and tropical storm warnings every year.” Many patients also said they protected their homes accordingly and still had supplies they bought in preparation for Hurricane Irma, including canned food, potable water, batteries, and fuel for power generators. Few women said they were not prepared, blaming the lack of time or competing demands like job or family responsibilities. However, all patients agreed they never thought that the island would be hit so hard and that it would take them so long to get back to normal. One woman expressed that “things are now more or less back to normal,” and another said that “things will never be the same.” Despite the daily struggles, patients were constantly thinking about when to resume their oncology care. With communications down, several patients ventured to clinics with the expectation of finding them open. They mentioned listening through the radio or by word of mouth that some medical facilities throughout the island were resuming operations, but they did not know about their oncology clinics because of the lack of telecommunications. Some patients remembered driving for more than an hour, when it was usually a 20-minute drive, to reach the clinics because of the roads, and when they arrived, the clinic was closed. Others had better luck and found the clinics open; one woman said, “I heard on the radio that the clinic was open, and I went there. [The clinic] did not have electricity yet but the doctor was seeing patients. However, the pathologist had not yet arrived to work so I had to wait again… The pathologist treated me in December.” Regardless of the trip’s outcome, they needed to drive home while there was sunlight and before the law-enforced curfew started. One patient mentioned, “I went to the doctor’s office [without appointment] because there was no telephone communication, I had to go straight to the medical offices… In the midst of all that trouble, leaving the house was a challenge because there was no electricity and the traffic lights were damaged. In addition, the clinics were opened on a reduced schedule, and there was a curfew in place.” Providers also told us that some patients showed up in person to see whether clinics were resuming patient treatment services (Table 3).
Theme 4: Local Communities Provided Much-Needed Social Support and Resources
Participants remembered that “Hurricane Maria left the island in a state of chaos.” Patients expressed high anxiety levels because they spent many days or weeks not knowing about their loved ones. Several patients also expressed anxiety because they were taking care of family members. One woman remembered, “After the hurricane passed, the winds ended, not a single tree leaf moved… Oh my God! My mom was bathed in sweat every night, and you know, there was no water either. I cried, and I wondered how much more time we were not going to have electricity; it was very frustrating. I spent my nights watching over her because my fear was that because of so much heat, her sugar levels would drop and she would die sleeping.” However, patients pleasantly recalled the continuous support they received from neighbors and community leaders, including getting hot meals, fuel for generators, and even help with some home repairs. As 1 woman expressed, “Puerto Rican people are resilient.” Many women agreed that community-level actions were fundamental in restoring access to neighborhoods and, ultimately, saving lives. Some providers and administrators mentioned that clinics helped patients by providing household supplies and transportation (Table 3). The majority of patients, providers, and administrators also agreed that, after the impact of Hurricane Maria, it took too much time for state and federal authorities to reach communities, especially those in rural areas. Some patients experienced significant losses of their homes and belongings. Fortunately, study participants reported that they and their household members were unharmed, but they recalled neighbors who died in the aftermath of the hurricanes. For all patients, the drastic lifestyle changes that followed the hurricanes constituted a dramatic departure from normality and resulted in an increase in stressors. These challenges greatly impacted the mental health of patients. One woman said, “I was worried all the time; it was very frustrating for me, psychologically it affected me a lot.” In these difficult times, however, patients witnessed solidarity and commitment to the restoration of communities. As a woman said, “We even went to cook at the community center. We were supportive of the community. I say that despite the hurricane situation, serving others made me feel that I was returning goodness.”
Discussion
Hurricanes Irma and Maria posed extraordinary challenges for everyone in PR and the USVI, including immediate health dangers. 8 But the literature shows that cancer patients are at more significant health risks than the general public because it might be difficult to get on-time oncology care, worsening their prognosis and survival.16-18 Women with gynecologic cancers included in this study revealed that disruptions in oncology care were common. Our findings are consistent with a recent study conducted in PR with 41 matched cancer survivors and non-cancer patient pairs. 26 That study found that cancer survivors experienced more barriers to access medical care compared to non-cancer patients, especially in the first 6 weeks after Hurricane Maria. 26 Patients in our study said that disruptions in cancer care were mostly caused by damage to health care infrastructure and loss of utility services. Their experiences align with findings from a recent systematic review showing that electricity and water supply are often damaged when hurricanes hit, leading to service disruption in cancer care facilities, resulting in extended closure of units and subsequent oncology treatment delays. 16 Radiotherapy is particularly vulnerable because it requires dependable electrical power and the daily presence of highly-trained clinical staff for treatment delivery. 20 Similar to the stories narrated by our study participants, the literature confirms that frequent damage to cancer care infrastructure following a hurricane includes flooding, which can cause costly damage to specialized radiotherapy equipment and clinical areas. 16
Communication issues between oncology providers and patients were also a significant challenge experienced by study participants. Prior to hurricanes Irma and Maria, no patient recalled receiving a written or formal communication plan from their cancer care teams. It is well documented that, in the aftermath of hurricanes Irma and Maria, the prolonged loss of electricity and internet limited the ability of providers to communicate with their patients for weeks and even months.4,8 Emergency preparedness tips for cancer patients include discussing with the care team the possibility of getting an extra supply of medicines and who to call or where to go if patients cannot get through to them using regular telecommunication methods. The National Cancer Institute’s (NCI) Cancer Information Service (CIS) can help guide cancer patients to where to continue treatment if a disaster disrupts care, including communications with providers, or displaces them to other locales. The CIS can refer patients to nearby cancer treatment facilities or NCI Community Oncology Research Program (NCORP) sites. Similarly, organizations like the American Society of Clinical Oncology have called for improved regional oncology cooperative networks to better connect displaced patients, their oncologists, and those providers who are still providing care in the wake of disasters. 27
Continuation and proper delivery of cancer care are among the top medical management priorities after a disaster. 16 According to the United Nations’ Sendai Framework for Disaster Reduction: 2015-2030, 28 “People with life-threatening and chronic disease, due to their particular needs, should be included in the design of policies and plans to manage their risks before, during, and after disasters, including having access to life-saving services.” While such plans should be housed within the Emergency Support Function (ESF) infrastructure of each U.S. jurisdiction (ie, federal authority to provide essential public health and medical services for disaster preparedness, response, and recovery), 29 the Centers for Disease Control and Prevention (CDC)-sponsored cancer control plans provide an excellent community-centered mechanism to support these efforts. 30 The CDC provides funds to all U.S. jurisdictions, including PR, to establish region-specific cancer control plans. Currently, these plans incorporate policy, systems, and built environment change interventions to support cancer control initiatives, so regional disaster plans would align well with the structure of local cancer plans. 30 Equally important, a prior study from our team also identified that, following Hurricane Maria, environmental stressors such as lack of potable water, heat and uncomfortable temperatures, poor air quality, noise pollution from generators, and pests (eg, mosquitos, rats) were top concerns in PR. 24 Future disaster plans should include strategies to mitigate these environmental stressors as they threaten public health and the well-being of populations.
Our interviews also showed that patients experienced emotional distress, especially those taking care of family members. At the same time, these women were resilient to resume their treatment and provide needed care to their families in the face of all adversity. Our observations are consistent with a biopsychosocial study reporting that Puerto Rican cancer survivors had greater levels of depression and greater resiliency vs non-cancer individuals in the aftermath of Hurricane Maria. 26 The authors concluded that patients had a tendency to conceal emotional distress to protect loved ones from worrying. 26 Our observations align with common cultural values in the Puerto Rican community and Hispanics in general, where family relationships are often prioritized before an individual’s well-being.26,31 Similar to other studies exploring people’s experiences post Hurricane Maria, 31 we also found that local communities, including neighbors, local organizations, and clinics, provided support and resources to help patients with their financial, physical, and psychological needs.
Strength and Limitations
A strength of our study was the diversity of participants, including the recruitment of women from 3 regions of PR and the USVI, the mix of privately and publicly insured patients, and the inclusion of oncology providers and administrators through key-informant interviews. Study limitations include the time between the hurricanes and data collection. Focus groups and interviews were conducted 15-18 months after the events, and participants might have experienced some recall bias. However, as noted by our participants, Hurricanes Irma and Maria shaped the lives of Puerto Ricans in such a way that they will never forget these events, even “the sound made by the strong winds” (quote from patient). Also, our interview guide was not designed to elicit diverse experiences in cancer care continuation by place of residence (ie, urban, suburban, or rural) among patients. Another study limitation was the small sample size, but the objective of this qualitative work was to elicit participants’ lived experiences with oncology care and not generalize the study findings. Studies are needed to quantitatively evaluate the impact of hurricane stressors and responses on oncology care and health outcomes, including accounting for differences by cancer type, time from diagnosis, type of treatment, and stage in therapeutic regimen. That is the focus of a retrospective cohort study being conducted by the authors, using a combination of medical chart review and survey data, with 400 women diagnosed with a gynocologic cancer between September 2016 and September 2018 (+/−1 year of the hurricanes).
Conclusion
This qualitative work provided firsthand information about the disruptions in oncology care experienced by and the resiliency of women with gynecologic cancer following hurricanes Irma and Maria. In participants' own words, the disruptions in care resulted from damages suffered by health systems, lack of basic services island-wide, and the loss of communication with their oncology care teams. Patients also highlighted their challenges in taking care of family members and the role of communities in the coping mechanisms and disaster response to overcome physical and emotional needs. Our findings underscore the need to incorporate oncology care in the preparedness and response plans of communities, health systems, and local government agencies to maintain adequate care for cancer patients during and after disasters like hurricanes.
Footnotes
Acknowledgments
We acknowledge the support of graduate students Lianeris Estremera, Jaina Falcón, Beverly Bracero, and Joel Colón in qualitative data collection and analysis. The authors also thank Naydi Pérez Ríos and Andrea M. Pacheco Díaz for her valuable feedback on the codebook and this manuscript. We would also like to express our gratitude to the patients and oncology care providers and administrators who shared their experiences with us.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Cancer Institute grant #R21CA239457 and partially supported by the National Institute of General Medical Sciences grant #U54GM13380. EAP was also supported by the Hispanic Alliance for Clinical and Translational Research, funded by the National Institute of General Medical Sciences grant #U54GM133807. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Ethics Approval
The Institutional Review Board of the University of Puerto Rico Medical Sciences Campus approved the study protocol, #A1810418 approved on August 30, 2018.
