Lived Experiences of Pancreatic Cancer Patients Undergone Whipple Procedure: A Qualitative Study

INTRODUCTION

In developed countries, pancreatic cancer ranks fourth or fifth in terms of cancer-related mortality. India is no exception to this phenomenon; variations have been noted in other regions, with the northeast exhibiting higher frequency.^[1]

Pancreatic cancer is often diagnosed late due to inadequate screening methods, limited diagnostic resources and patient-related barriers such as fear and anxiety related to uncommon symptoms.^[2] In around 80% of patients, it is either locally progressed or there is metastatic illness at the time of diagnosis and the patients are left only with palliative care. Hence, patients’ functionality, general well-being and other aspects of their health-related quality of life are adversely affected by pancreatic cancer.^[3] Patients diagnosed with pancreatic cancer have to undergo a series of treatments such as surgery, chemotherapy and radiation therapy and each treatment modality has its own side-effects.^[4]

For patients with localised disease, a pancreaticoduodenectomy (Whipple surgery) is performed to remove the tumour from the head of the pancreas. Although it increases the survival of an individual with the best outcomes and potentially a cure, being a complex and extensive procedure, it is associated with many immediate, short-term and long-term complications impacting their quality of life.^[5]

Therefore, understanding the lived experiences of pancreatic cancer patients after the Whipple procedure will provide more insight into the problems of the patients and will help plan various interventions for them.

MATERIALS AND METHODS

RESULTS

Table 1 depicts the sociodemographic and clinical profile of the participants. The mean age of the participants was 51.61 ± 10.89 years, 35% were over 50 years old and the majority were male (61.7%). A significant portion of patients resided in rural areas (80.0%) and were married (98.3%). In terms of education, 43.3% had completed high school, while 13.3% had an intermediate or diploma level of education. The tumours were primarily located in the head of the pancreas (58.3%) and were mostly 3–5 cm in size (58.3%). Regional lymph node involvement was noted in 86.6% of the cases, while 71.6% of the patients did not exhibit distant metastasis. Treatment modalities included chemotherapy (30.0%) and radiation therapy (5.0%). The length of hospital stays for the majority of patients (60.0%) was between 16 and 30 days.

DISCUSSION

The study provides significant insight into the aim of the study by explaining the lived experiences of the patients after the Whipple procedure. Since the study was done 3 months after the Whipple surgery, this period can provide great insight into the immediate outcome after the Whipple procedure. Following Colaizzi’s steps of data analysis, eleven main themes emerged. These were post-diagnosis reaction, burden of the disease, physical problems, socioeconomic burden, psychological issues, impact on social life, financial support, disturbed body image, spirituality, communication with healthcare professionals and hospital experiences.

The current findings reported that these patients often face a lot of emotional and physical challenges as they struggle with managing symptoms, lack a support system and have limited communication with healthcare providers, which can make them feel stressed and isolated. These challenges impact their overall well-being and quality of life, showing the need for more support. Similar findings of difficulties in managing the patient’s symptoms, limited communication with healthcare providers and a lack of adequate support have been reported by Chong et al.^[6] It has been further reported that the patient’s caregivers also reported high levels of anxiety and sadness highlighting the need for personalised support interventions to improve caregiver well-being and enhance their quality of life.

The post-diagnosis reactions among individuals facing potential health challenges, particularly cancer, reveal profound emotional and cognitive responses. Participants expressed intense fear and worry upon receiving test results indicating health abnormalities, with concerns ranging from the treatability of their condition to the uncertainty of their future health. One of the participants verbalised ‘I got my test reports today. When the doctor examined my reports, it was revealed that my cell count had increased. I became very scared, and I started worrying a lot about how I could have acquired this illness. When I heard about my illness, my hands and body started shaking. I kept asking the doctor repeatedly if there was a cure for this illness. I was so scared that I didn’t know what would happen next.’ The results are consistent with the findings of a study by Conley et al.^[7] that pancreatic cancer patients experienced emotions such as shock and fear when they got to know about their cancer diagnosis. Hence, it stresses the significance of patient-focused communication in delivering bad news and suggests incorporating their viewpoints to enhance support.

The current study also brought out the burden associated with treatment where they expressed uncertainty about recovery, the burden of follow-up and long-distance constraints. These findings are in line with Prinja et al.^[8] wherein the mean direct out-of-pocket expenditure per outpatient consultation and an episode of hospitalisation were estimated as INR 8053 and 39085, respectively, and per annual treatment cost as INR 331,177.

In the present study, the participants reported significant pain in the stomach after surgery, affecting their ability to work. Weakness is experienced after surgery, affecting the individual’s ability to work and engage in daily activities. One of the participants verbalised that after the surgery, I experienced a lot of stomach pain and weakness. If I get stomach pain, I can’t sleep the whole night; I spend the entire night crying. Taking medicine provides some relief, but then the stomach pain returns. A similar study was conducted by Coveler et al.^[9] reported abdominal pain among the patients which disturbed their sleep quality and also affected their day-to-day life.

Participants in the current study reported a profound impact of the diagnosis and treatment on their lives, including physical weakness, anxiety and various side effects such as hair loss and fatigue from chemotherapy. Burrell^[10] has reported that fatigue, difficulty sleeping, loss of appetite, difficulty digesting meals and weight loss were consistently identified as the most common and severe symptoms. Fatigue, the most common symptom experienced by participants can occur because of the treatment of cancer and cancer itself. Pancreatic cancer can cause fatigue due to inflammation, metabolic changes, anaemia, pain, sleep disturbances, nutritional challenges secondary to digestive problems and emotional stress. Treatment-related fatigue may be associated with chemotherapy, radiation therapy, anxiety about treatment outcomes, weight loss, muscle wasting and emotional distress.

Following surgeries, participants described challenges such as being unable to work, financial difficulties and concerns about family responsibilities. Some relied on family support for daily tasks, while others faced business disruptions and financial strain due to their health conditions. One of the participants verbalised that ‘A lot of financial difficulties have arisen after the surgery. Sometimes, there isn’t even enough money for medication’. Similarly, in a study conducted by Sun et al.^[11] on financial stress, the findings reveal that a significant proportion of pancreatic cancer patients rated their family’s financial stress as moderate (49%) or severe (36%), with higher levels of financial strain correlating with heavier caregiving burdens on pancreatic cancer caregivers. Body changes such as weight loss resulting from illness may affect a person’s self-image and confidence. One of the participants verbalised ‘Yes, there has been a significant change in my body. Previously, I used to look very good, but now there’s a noticeable difference. My weight has improved a bit now, but during the illness, I lost a lot of weight.’ In a study by Nayak et al.,^[12] it was found that 85% of the surveyed people with cancer were not satisfied with their bodies. Thus, they may need support and resources to help them cope with these challenges.

The present study brought out various psychological concerns such as tension, worry, irritability, depression, low confidence and avoidance of social functions related to poor self-image. One participant verbalised ‘My behaviour has changed a lot; I don’t behave the same as before. I don’t like talking to anyone, especially not to women.’ A similar finding was also reported in a study conducted by Yılmaz et al.^[13] wherein the participants had a belief that cancer is a social stigma due to its poor prognosis and its associated challenges and treatment. Because it is often diagnosed at a late stage when treatment options are limited, there can be a sense of hopelessness surrounding the disease. People may feel isolated or may have misconceptions about the diseases contributing to the stigma.

In addition, in terms of spirituality, participants in the current study expressed gratitude to God for their lives being saved. This showed that spirituality brings a positive attitude to the patients during their treatment journey. Similar to our findings, a study conducted by Taylor et al.^[14] has explored the significance of spirituality in patients undergoing chemotherapy for pancreatic ductal adenocarcinoma, emphasising the necessity of providing spiritual support, identifying and addressing negative emotions, strengthening health education, emphasising companionship and creating a positive atmosphere is crucial for enhancing spiritual well-being. Furthermore, the study underscored the critical role of managing symptoms such as anxiety, fatigue and insomnia, as these factors profoundly affect the spiritual well-being of an individual.

Social support can have a significant impact on the quality of life of the individuals facing pancreatic cancer. Having a strong support system can provide emotional support, practice assistance and a sense of belonging. It can also reduce the feeling of isolation, anxiety and depression and improve overall well-being. As per Bekele et al.,^[15] social support has an indirect impact on the quality of life and a direct impact on the perceived health status and functional status. In the present study, the patients reported having family support and support from friends as one of the participants verbalised ‘My family is fully supporting me; my daughter is more supportive and caring’.

In terms of hospital experiences, the current study participants expressed satisfaction with nursing care while some expressed a language barrier with healthcare professionals in the OPD. Similar findings were observed in a study by Mehrnoosh et al.^[16] on effective patient-professional communication. It has been revealed that most cancer patients were satisfied with nurse communication. Effective patient–nurse communication is vital for cancer patients’ psychosocial well-being. The study reported that among 384 patients, 81.5% were satisfied with the communication and information provided by nurses while 18.5% were not satisfied.

CONCLUSION

Despite multiple treatment options, pancreatic cancer patients who undergo Whipple surgery face numerous ongoing health problems. Their lived experiences emphasise the need for a dedicated patient care system that specifically addresses these issues to enhance their overall quality of life.