A Grounded Theory of the Lived Experiences of People with Pancreatic Cancer in Northern Ireland: Study Protocol
Background/Objectives: Pancreatic cancer remains highly fatal, often diagnosed late with poor prognoses and worse psychological quality of life compared to other cancers. Globally, it is the twelfth most common cancer but the sixth leading cause of cancer-related deaths, with actual 5-year survival rates below 5%. Northern Ireland’s outcomes are among the worst, yet research on people’s experiences across the illness trajectory is scarce. Consequently, the unique needs of people with pancreatic cancer are poorly understood. It is crucial we develop deeper understanding of the entire pancreatic cancer journey to address this. This study aims to explore the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland and generate a theory that explains their journeys, from pre-diagnosis through to survivorship or end of life. Methods: This study will adopt a grounded theory approach, incorporating multiple qualitative data generation methods: semi-structured interviews with patients and care partners, and focus groups with professionals. An optional photovoice (participatory photography) method will be offered to participants. Theoretical sampling principles and constant comparative analysis will guide recruitment, data collection, and analysis to ensure the explanatory theory is rooted in participants’ lived experiences. Conclusions: Establishing a holistic, in-depth understanding of people’s pancreatic cancer journeys will enable us to better comprehend, anticipate, and meet their needs. A theory grounded in empirical data about lived experiences can inform priorities for future care, support services, policy, and research, and contribute to the development of support interventions that help people to maintain the best possible quality of life, whether during a short-term, terminal illness; treatment journey; long-term symptom management; or survivorship.
- Research Article
56
- 10.3349/ymj.2006.47.1.105
- Feb 28, 2006
- Yonsei Medical Journal
The five-year survival rate of patients after curative resection of hepatocellular carcinoma (HCC) has been reported to be 30 to 50%, however the actual survival rate may be different. We analyzed the actual 5-year survival rate and prognostic factors after curative resection of HCC. Retrospective analysis was performed on 63 HCC patients who underwent curative resection from 1998 to 1999. A total of 63 cases were reviewed, consisting of 53 men and 10 women, with a median age of 49 years. These cases included all four pathologic T stages (pT stage) and had the following representation: stage 1 (1 case), stage 2 (17 cases), stage 3 (38 cases), and stage 4 (7 cases). In our study, the actual 5-year survival rate was 57.0% and the median survival time was 60 months. In addition, the patients in our study had an actual 5-year disease-free survival rate of 50.2% and a median disease-free survival time of 46 months. Thirty-one patients had recurrences, with a majority occurring within one year (65%). These patients with early recurrences had a poor actual 5-year survival rate of 5%. A univariate analysis showed that the prognostic factors influencing survival rate were the presence of satellite nodules, increased pT stage, HCC recurrence, and the time to recurrence (within one year). Interestingly, microvascular invasion made a difference in survival rate but was not statistically significant (p = 0.08). Furthermore, factors influencing the disease free survival rate include the presence of satellite nodules, microvascular invasion, and pT stage. Multivariate analysis identified pT stage as the only statistically related factor in determining the disease-free survival rate. The most important prognostic factor of HCC is recurrence. Moreover, the major risk factor for recurrence is an advanced pT stage. Therefore, performing prospective studies of postoperative adjuvant therapy is necessary to prevent recurrences after hepatic resection. Furthermore, active preventative treatment and early diagnosis of recurrences should be of the highest priority in the care of high-risk patient groups that have an advanced pT stage.
- Research Article
8
- 10.1136/bmjopen-2013-004074
- Dec 1, 2013
- BMJ Open
ObjectiveTo examine the differences in the interval between diagnosis and initiation of treatment among women with breast cancer in Northern Ireland.DesignA cross-sectional observational study.SettingAll breast cancer care patients in the...
- Research Article
1
- 10.1001/jamanetworkopen.2024.53311
- Jan 6, 2025
- JAMA Network Open
This cohort study examines the incidence and prevalence of metastatic breast cancer in Northern Ireland using population-based cancer registry data and health records.
- Research Article
- 10.1111/codi.12484
- Jan 22, 2014
- Colorectal Disease
This study aimed to document developments in rectal cancer services in a UK population and evaluate changes in outcome over a 10-year period. Patients diagnosed with primary rectal carcinoma in 1996, 2001 and 2006 were identified by the Northern Ireland Cancer Registry. Data were retrospectively collected on presentation, investigation, treatment and staging. Differences over the period were analysed using the chi-squared test; Kaplan-Meier and Cox regression tests were used for survival analysis. After exclusions there were 636 patients, including 187 presenting in 1996, 203 in 2001 and 246 in 2006. The use of preoperative MRI of the rectum, endorectal ultrasound and abdominal CT increased during the study period. For patients treated by surgery, total mesorectal excision (TME) increased from 19% in 1996 to 64% in 2006 (P<0.001). The use of radiotherapy (27% in 1996, 47% in 2006) and chemotherapy (21% in 1996, 32% in 2006) increased.The overall 5-year survival improved significantly between 1996 and 2006 from 34% in 1996 to 45% in 2006 (P=0.02). Among patients having surgery, 5-year survival increased from 43% in 1996 to 63% in 2006 (P<0.001). Multivariate analysis showed that the improvement in survival was associated with TME and chemotherapy, while radiotherapy was not. Survival of patients with rectal cancer in Northern Ireland has improved significantly over the last decade, probably due to the increased use of TME and chemotherapy.
- Abstract
- 10.1136/jech.2011.142976b.74
- Aug 1, 2011
- Journal of Epidemiology and Community Health
ObjectivesTo investigate perinatal risk factors for testicular cancer in a Northern Ireland population cohort.MethodsPerinatal data have been routinely recorded in Northern Ireland for all births in the period 1971–1986 (n=447,...
- Research Article
- 10.1016/j.jcpo.2025.100650
- Oct 14, 2025
- Journal of cancer policy
Invisible geographies - the rural and coastal blind spot in UK cancer policy: A content analysis.
- Research Article
5
- 10.1136/jech.44.3.220
- Sep 1, 1990
- Journal of Epidemiology & Community Health
Northern Ireland has the highest standardised mortality ratios for colon cancer in the United Kingdom and the Republic of Ireland has some of the highest mortality rates for cancer in the world. The aim of the study therefore was to investigate trends in colorectal cancer in the north and south of Ireland over the period 1950 to 1984. The study was a cohort analysis of deaths from colorectal cancer for ages 35-74 years by five year age groups, divided by sex. This was a population study involving all cases reported to the Registrar General of Northern Ireland and the Eire Vital Statistics and Central Statistical Office during the study period. As in mainland Britain, rectal cancer mortality declined in the north and the south during the study period, but the fall began sooner for males than females. Colon cancer mortality fell in the late 1950s but subsequently rose to its previous high levels. The observation that there were declines in mortality in the north and south of Ireland in the late 1950s does not support the hypothesis that altered diet due to war rationing in Great Britain and Northern Ireland underlay the fall in British colon cancer mortality after the war. The very high standardised mortality ratios for colon cancer in Northern Ireland highlight a continuing major public health problem in the region.
- Research Article
1
- 10.1007/s11845-021-02783-0
- Oct 16, 2021
- Irish Journal of Medical Science
IntroductionLung cancer is the leading cause of cancer deaths in many Western countries, but its incidence has never been studied in Northern Ireland.AimsAccordingly, the present study was mounted to determine, for the first time, the incidence of the condition in Northern Ireland and to compare the findings with other regions in the British Isles.MethodsA notification study of the incidence of lung cancer (ICD 162) was conducted in Northern Ireland during 1991/1992. Notifications from 6 sources were computerised and linked. Incident cases were identified and analysed in relation to Age, Sex and Geographical region—Northern Ireland, England and Wales, Scotland and the Republic of Ireland.ResultsSome 900 incident cases of lung cancer were identified. The incidence rate per 100,000 population was found to be 57.04. Mortality underestimated incidence by 12.5%. (p<0.05). The male to female incidence ratio was 2.1: 1, and this ratio was similar in other regions, except Scotland, where the ratio was 1.7:1. The null hypothesis of a common incidence distribution across regions was formally rejected. A variety of models were fitted and a model in which the log-odds on incidence was a quadratic function of age fitted most of the regional data.ConclusionsNorthern Ireland had the lowest incidence of lung cancer in the UK, but its overall rate was still 40% higher than that observed in the Republic of Ireland which had the lowest rate in the British Isles. Across regions, the pattern of incidence by age and sex was complicated, but a linear logistic model fitted all of the Irish data and the female data in Scotland, satisfactorily.
- Research Article
29
- 10.1007/s10198-007-0047-4
- Mar 31, 2007
- The European Journal of Health Economics
Lung cancer is a major cause of morbidity and mortality. In this paper, the hospital costs incurred by 724 lung cancer patients diagnosed in 2001 were determined by review of case notes. These represented all patients diagnosed with lung cancer in Northern Ireland on whom data existed in that year. Total hospital costs in the 12 months from presentation for the 724 patients were 3.99 million pounds. Average patient costs were 5,956 pounds for patients diagnosed with non-small cell lung cancer and 5,876 pounds for those with small cell lung cancer. The main component of cost was inpatient stay, representing between 62 and 84% of costs depending on cell type. Multivariate analyses revealed significant differences in cost related to staging, co-morbidities, age, and deprivation. Total annual hospital costs were 13 times as high as the estimated enforcement cost of the smoke-free legislation in Northern Ireland.
- Research Article
- 10.1200/jco.2009.27.15_suppl.e20531
- May 20, 2009
- Journal of Clinical Oncology
e20531 Background: The survival advantage for combination chemotherapy in advanced gastroesophageal adenocarcinoma is well documented. Epirubicin and cisplatin in combination with either 5FU (ECF) or capecitabine (ECX) result in response rates of 35–46% and a median survival of around 9 months in RCT. We report the impact of socioeconomic status on the outcome of ECF and ECX treatment in advanced gastroesophageal cancer patients in Northern Ireland between 2000 and 2007. Methods: All patients with advanced esophageal (O), gastric (G), or esophagogastric junction (OGJ) adenocarcinoma, receiving palliative chemotherapy from January 2000 to August 2007, were identified from our institutional database. Baseline demographics, clinical characteristics, treatment details, and clinical outcomes were recorded. Patients receiving chemotherapy in a clinical trial were excluded. Survival was estimated using the Kaplan-Meier method. Deprivation was assessed using the patient's home address deprivation index (DPI) (Northern Ireland Multiple Deprivation Measure 2005; May 2005. Northern Ireland Statistics and Research Agency. www.nisra.gov.uk ). Results: 274 eligible patients (m=200, f=74, O=114, OGJ=19, G=141) were identified. Median age was 62 years (range 22–83). 172 (62.8%) had ECOG performance status 0 or 1. 231 patients (84.3%) had metastatic disease, 43 (15.7%) had locally advanced disease. 216 (78.8%) patients received ECF and 58 (21.2%) patients received ECX. Overall median survival was 7.3 months. Treatment response and performance status were strong predictors of survival, however disease extent did not influence survival. Median survival was significantly longer in those with DPIs in the upper two quintiles than the lower 3 quintiles (9.5 months vs. 6.8 months, p=0.032). Conclusions: Outcomes achieved with palliative ECF/ECX treatment are similar to the reference clinical trials. Socioeconomic deprivation is significantly associated with reduced survival in this group of patients and is unrelated to disease extent at presentation; however it may be related to nutritional status and comorbidity and requires further investigation. No significant financial relationships to disclose.
- Research Article
- 10.1016/s0936-6555(05)80791-5
- Mar 1, 1990
- Clinical Oncology
Cervical cancer in young women in Northern Ireland: 1970–1985
- Abstract
- 10.1136/ijgc-2024-igcs.331
- Oct 1, 2024
- International Journal of Gynecologic Cancer
IntroductionThe aim of this retrospective cohort study was to assess the impact of the COVID-19 pandemic on patients diagnosed with endometrial cancer in Northern Ireland (NI).MethodsAll patients with endometrial cancer...
- Research Article
82
- 10.1016/s0039-6109(05)70143-2
- Jun 1, 2001
- Surgical Clinics of North America
PANCREATIC CANCER: The Bigger Picture
- Research Article
- 10.1007/s11845-023-03465-9
- Aug 22, 2023
- Irish Journal of Medical Science
Lung cancer is a major cause of death in Western countries, but survival had never been studied in Northern Ireland (NI) on a population basis prior to this study.AimsThe primary aims were to describe the survival of patients with primary lung cancer, evaluate the effect of treatment, identify patient characteristics influencing survival and treatment and describe current trends in survival.MethodsA population-based study identified all incident cases of primary lung cancer in NI during 1991–2 and followed them for 21 months. Their clinical notes were traced and relevant details abstracted. Survival status was monitored via the Registrar General’s Office, and ascertainment is thought to be near-complete. Appropriate statistical methods were used to analyse the survival data.ResultsSome 855 incident cases were studied. Their 1-year survival was 24.5% with a median survival time of 4.7 months. Surgical patients had the best 1-year survival, 76.8%; however, adjustment suggested that about half of the benefit could be attributed to case-mix factors. Factors influencing treatment allocation were also identified, and a screening test showed the discordance between ‘model’ and ‘medic’: 210 patients were misclassified. Finally, the current trend in 1-year survival observed in the Republic of Ireland was best in the British Isles.ConclusionsOverall, survival remains poor. The better survival of surgical patients is due, in part, to their superior case-mix profiles. Survival with other therapies is less good suggesting that the criteria for treatment might be relaxed with advantage using a treatment model to aid decision-making.
- Research Article
28
- 10.1136/jech.50.6.640
- Dec 1, 1996
- Journal of Epidemiology and Community Health
To describe the variation in the incidence of colorectal cancer across Northern Ireland and relate it to factors associated with community deprivation. This was a cross sectional descriptive study. Incidence data were obtained from a population based register for the period 1990-91. Small areas were characterised by their "affluence", or lack of it, by deriving a Townsend deprivation score for each electoral ward, using information from the 1991 census. PARTICIPANTS, MAIN OUTCOME MEASURES, AND STATISTICAL METHODS: The age standardised incidence was calculated for all colorectal cancer cases diagnosed histologically in 1990-91. Electoral wards were grouped into quintiles of the population after ranking of their Townsend scores and the association with incidence was studied using Poisson regression. The age standardised colorectal cancer incidence ranged from 22.5 (for quintile 1) to 29.9/100,000 (quintile 5) for men but the trend for women was less regular and rates were 18.4, 23.8, 27.3, 26.5, and 23.9/100,000 for quintiles 1-5 respectively (that is, from the most "affluent" to the most "deprived" fifths of the population). After adjusting for age and sex in Poisson regression, there was a significant association between the total colorectal cancer incidence and levels of community deprivation. The rate ratio for the most deprived quintile of the population (compared with the least) was 1.28 (95% CI 1.06,1.53). The effect was stronger for rectal cancer than for colonic cancer. There was no association between community deprivation and the cancer stage at diagnosis. In this population, the colorectal cancer incidence is associated with the level of material deprivation. The disease stages at the time of diagnosis in patients from more deprived areas seem to be comparable with those of patients from affluent areas. As others have shown, associations such as these are not explicable entirely on the basis of the distribution of known risk factors. Further research is needed to determine plausible mechanisms for the association.
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