Understanding the treatment experiences of adults diagnosed with early-onset colorectal cancer: A qualitative study
Abstract
Objective
Early-onset colorectal cancer (CRC) incidence in adults aged under 50 is increasing. There is a critical lack of knowledge regarding the challenges faced by early-onset CRC patients and their experiences of treatment. The aim of this study was to explore the lived experiences of individuals receiving treatment for early-onset CRC, and the resulting impact on their lives.
Methods
Semi-structured interviews of patients with early-onset CRC in the UK (n = 21) were conducted from August 2021 to March 2022. Interviews were recorded and transcribed verbatim. Data were analysed using thematic analysis.
Results
Results identified four key themes: (1) early-onset CRC treatment results in sudden physical, psychological and social impacts in all aspects of life; (2) early-onset CRC patients have unique supportive care needs which are not recognised in current practice; (3) there is a need for tailored information; (4) a lack of support was identified in the areas of mental health, sexual health and fertility.
Conclusions
Our study highlights numerous unique issues experienced by the early-onset CRC patient group during treatment. There is a need for change in clinical practice, along with the development of international guidelines and tailored resources for both patients and healthcare professionals, in order to improve care.
1 BACKGROUND
An increase in the incidence of colorectal cancer (CRC) in adults under the age of 50 years, known as early-onset CRC, has been observed globally.1 Despite extensive reporting on this trend, there is a lack of knowledge around optimal treatment practices for early-onset CRC, including the unique supportive care needs of young patients who are facing a devastating diagnosis early in life. With increasing numbers of early-onset CRC patients being seen in clinics, studies are needed to understand the challenges facing these individuals, to improve care for this patient group.
Currently, treatment protocols for CRC apply to all patients, with little or no consideration given to patient age.2-4 Guidelines on how to best manage and support early-onset CRC patients during treatment are lacking, and specific support services for younger patients are often not in place.5 Cancer treatment has potentially long-term side physical and psychological side effects6-11 which can lead to poorer medical and psychosocial outcomes,12 and recognition of these toxicities in younger patients is crucial.
The Never Too Young report by Bowel Cancer UK, released in August 2020, surveyed 1295 early-onset CRC patients and caregivers, and found varying levels of support at different points of the care trajectory.13 Globally, there are a lack of studies on the unique experiences of these individuals contributing to an inconsistent and varied approach in supportive care.14, 15 There is an urgent requirement for research on the priorities and challenges for early-onset CRC patients during treatment, as well as the development of international guidelines. This gap is beginning to be recognised, with the Delphi Initiative for early-onset CRC publishing the first international consensus recommendations for early-onset CRC in March 2023.16 These highlight areas of supportive care that require further research, which we aim to build on in our work. The aim of this study was to explore the experiences of adults aged under 50 years receiving treatment for CRC, and to understand their supportive care needs during this stage of the cancer pathway.
2 METHODS
2.1 Design
This study utilised a phenomenological qualitative design,17 using online semi-structured interviews to collect data.18 Ethical approval was granted by the Faculty of Medicine, Health and Life Sciences Research Ethics Committee at Queen's University Belfast (MHLS 21_45). Participants were recruited between August–December 2021 via social media, using convenience and snowball sampling methods.19 Any individuals in the UK who were diagnosed and treated for CRC between 6 months and 5 years prior to recruitment, and were aged 18–49 years at the time of their diagnosis, were eligible to participate in the study (Supporting Information S1: file 1). A social media post was created (Supporting Information S1: file 2), which was shared on Twitter by the research team, and via online pages by regional and national cancer charities. Interested participants were requested to contact the primary researcher (AR) by email and were provided with a participant information sheet (Supporting Information S1: file 3). Eligible participants were emailed a consent form (Supporting Information S1: file 4) and a date was arranged for interview.
2.2 Data collection
The interview guide (Supporting Information S1: file 5) was developed by the research team based on the literature16, 20 and their combined expertise in Oncology, Epidemiology and qualitative research. This was subsequently refined by patient and public involvement from the Northern Ireland Cancer Research Consumer Forum. Following this the amended interview guide was piloted with an early-onset CRC survivor. The interview guide contained seven areas for discussion: (1) sources of support; (2) experience of the healthcare system; (3) relationship with healthcare professionals (HCP); (4) treatment decision-making; (5) physical symptoms and side effects from treatment; (6) mental health; and (7) impact on their relationships (including fertility and family planning). Open ended questions were included at the start and end of the interview, to allow any other topics felt to be relevant by participants to be discussed. Virtual semi-structured interviews were held by AR (Oncology trainee and PhD student) with participants from August 2021 to March 2022, conducted over Microsoft Teams. Interviews lasted between 30 min and 1 h 55 min, were recorded digitally and transcribed verbatim. Field notes were taken to indicate areas to return to in questioning. Participants were offered the opportunity to review the transcript of their interview.
2.3 Data analysis
Interviews were conducted and transcribed by AR. Demographic information was obtained during the interview and summarised using descriptive statistics. Transcription notation was adapted from Jefferson's formal transcription system.21 Data were analysed using thematic analysis, primarily conducted in Microsoft Word and Excel. An iterative approach was taken using the six phases of analysis outlined by Braun and Clarke.22 Preliminary coding was carried out by AR and three transcripts were analysed independently by experienced qualitative researcher OS to compare and discuss codes, providing a consensus on codes for subsequent transcripts. AR then coded the data across cases and grouped codes into subthemes. The research team analysed the subthemes and identified themes in an inductive process, identifying those most relevant to the research question.
3 RESULTS
Twenty-one individuals participated in online interviews. A further 10 people contacted AR but were ineligible or elected not to proceed. The demographics of interviewees are shown in Table 1. The majority of participants were female (76%), and 81% had stage I-III disease, therefore received curative treatment.
| Demographic | n | % |
|---|---|---|
| Sex | ||
| Male | 5 | 24% |
| Female | 16 | 76% |
| Age | ||
| 18–39 years | 9 | 43% |
| 40–49 years | 12 | 57% |
| Stage of colorectal cancer | ||
| I–III | 17 | 81% |
| IV | 4 | 19% |
| Employed at diagnosis | ||
| Yes | 17 | 81% |
| No | 4 | 19% |
| Married/long-term relationship | ||
| Yes | 17 | 81% |
| No | 4 | 19% |
| Dependants | ||
| Yes | 12 | 57% |
| No | 9 | 43% |
Analysis demonstrated that the experiences of patients during the treatment phase of disease had four key themes, regarding the impact of treatment, support during treatment, the need for tailored information and areas of unmet need.
3.1 Theme 1: The impact of early-onset CRC treatment on an individual's health and wellbeing
I’d felt really undignified, I’d felt really old, I felt like an old person because of the things that had happened to me. And I just had had enough.
P7, age 18–39
I was on Instagram or something and I was scrolling, or Facebook, and it was people's weekends, and I was in such bad form and I was like, ‘how dare people have a life’…there was a lot of that feeling as well, of other people getting on with their life and me just being stuck because I was so sick.
P14, age 40–49
I started to look different. My skin was just red raw the whole time. Visually my hair thinned, I didn't lose my hair but my hair thinned, the dark eyebrows, the long eyelashes, and visually I just looked a mess really. I hated it.
P19, age 40–49
3.2 Theme 2: Support for early-onset CRC patients during treatment
What I wanted was to find people who were in my situation because my concerns were around childcare, telling children, all of those things. But it's a different set of concerns to just purely the medical side of things. How do you tell children? How do you manage things when you're knackered from radiotherapy? What have people found useful?
P6, age 18–39
While being online was often helpful, participants also acknowledged that there were negatives. Social comparison to other patients was an issue, which often resulted in feelings of guilt or inadequacy over how they were managing with treatment. In addition, online stories were often noted to have bad outcomes, causing distress.
During treatment, participants commonly reported great support from family and friends. Cancer treatment caused challenges in daily activities, with participants frequently struggling with household tasks, struggling to carry very young children and being unable to work or take children to and from school. This loss of independence also led to guilt at not contributing to family life and placing a burden on their loved ones, particularly elderly parents who were distressed at their child being ill. Protecting their families provided a strong motivating factor to persevere with treatment and maintain a sense of normality where possible.
3.3 Theme 3: The need for tailored information in early-onset CRC
One of the most annoying things from everybody I got was, my question is, “what can I do to get better and make my recovery the best it will be, and as quick as possible?” Everybody was useless…the trouble is, I appreciate that most people who have bowel cancer seem to be probably in their seventies or something and not necessarily knocking out a 10K.
P9, age 40–49
But I wanted to quiz him on all these different things…the fact that your average patient is probably not as active as I am, has probably got a different lifestyle to what I have, does not have to worry about if they take chemotherapy is it going to affect them in a cognitive way that might affect my ability to work and earn over the next few years.
P18, age 18–39
3.4 Theme 4: Areas of unmet need during treatment for early-onset CRC
And so I brought it up. I believe it was either the week before that, that same week just before the chemo and said you know, what about this? I remember asking if I could have my eggs frozen. And they said that would hold up the chemo. I don't think they put a timescale on it, but they said that would hold up the chemo and we need to get the chemo done. And so I said OK, and that was it. And I think that was quite a big bombshell.
P1, age 18–39
I didn't know what to look out for, so I thought I was just going mad and I didn't realise it was as bad as it was. Actually if someone said to me, ‘oh these are the warning signs there's something not right’ I think I would have sought treatment earlier and I don't think it would have gotten so bad early.
P13, age 18–39
That was the subject that nobody talked about. That was a big thing after I was well enough but that is something I think, especially when you're younger, that wasn't talked about, or nobody talked to me about how treatment or surgery might have affected that, or with a stoma, how that might affect it.
P3, age 40–49
4 DISCUSSION
This qualitative study explored the experiences of early-onset CRC patients during their treatment. The results highlight those with early-onset CRC as a specific patient group with unique supportive care needs, which are not recognised in current practice. Toxicities from CRC treatment have a range of short and long-term physical, psychological and social impacts. Feelings of isolation and unfairness are prominent given the relative rarity of early-onset CRC, with patients describing loneliness and the need to connect with others with similar stories. Family/friends and the internet were key to how young patients coped during treatment. Specific information for early-onset CRC is lacking, with communication relating to “typical” older CRC patients felt to be irrelevant, and treatment decisions are complicated by a lack of relevant survival data for younger patients. Despite a high level of need, there is a crucial lack of support in the areas of mental health, sexual health and fertility counselling, and the need for more holistic care is demonstrated.
Online sources of information were noted as a key support for early-onset CRC patients, who were typically surrounded by older patients at their local hospitals. This is in contrast to older cancer patients who utilise the internet less frequently during treatment.23 The use of social media for peer support in young adults with cancer has benefits such as reducing loneliness and allowing connection with others who have similar experiences.24 In addition to support and information needs, the internet and social media provide opportunities for patients to share personal stories, fundraise for specific causes, advocate for others in a similar position, raise awareness of cancer and break what are perceived as taboos in society such as embarrassing symptoms and stoma management.24-26
Relevant advice about tailored exercise programs, stoma management, dietary adjustments, reducing the risk of recurrence and communication with children about cancer, among others, were topics searched for online. Understanding the requirements of younger patients, along with developing care pathways to address these needs, is of utmost importance, as unmet needs are linked to poorer quality of life and higher psychological distress.27
Our results demonstrate that there was a lack of holistic information for early-onset CRC patients. This has also been identified as an unmet need in early-onset CRC survivors following treatment,28 and the importance of high quality communication, along with the need for research into optimal communication strategies, is outlined in a recent framework for early-onset CRC research.5
Treatment for CRC includes chemotherapy and pelvic radiotherapy, which can cause premature menopause, along with infertility and sexual dysfunction in both men and women.29, 30 European Society for Medical Oncology guidelines state that, “all cancer patients of reproductive age should receive complete oncofertility counselling as early as possible in the treatment planning process, irrespective of type and stage of disease.”31 However, our study demonstrates a gap between guidelines and clinical practice in early-onset CRC. Similarly, a study published in 2022 found that 43.6% of female early-onset CRC patients had no discussion with HCP about this area of their lives (n = 101, 24% of these receiving active treatment).32 Our findings also highlight conflict between whether to prioritise cancer treatment or fertility preservation in early-onset CRC patients, as has been observed in other cancers.33
Our findings show a lack of discussion regarding sex and intimacy. Participants reported there was no support or information available regarding sex and intimacy, and often it was an issue they kept to themselves or shared only with their partner. Sexual health, particularly in younger patients, is an important contributor to quality of life,34 and involvement of support services in this area is urgently needed.
With regard to mental health, previous studies in CRC have demonstrated that patients (of all ages) experience reduced mental well-being across the trajectory of their illness.35 A population-based cohort study, published in 2022, found that early-onset CRC patients had a higher risk of depression than CRC patients aged 50 years or older, with males more affected than females, and 17.5% of incident depression occurring within 12 months of diagnosis.36 However, to our knowledge no studies exist on mental health impact during the treatment phase, and this is an important distinction due to specific issues faced at different stages of the cancer pathway. Our study indicates the urgent need for involvement of mental health professionals in the care of early-onset CRC patients, both during treatment and beyond.
The disruption of work and family life, along with unmet needs in the areas of sexuality and psychological support, have been observed in other types of early-onset cancer.37, 38 However, the relative rarity of CRC in younger adults and the lack of tailored treatment demonstrates the urgency of improving care for this isolated patient group.
4.1 Clinical implications
To our knowledge, this study is the first in the UK that has specifically focused on the experiences of early-onset CRC patients during treatment. The depth of the impacts of cancer treatment highlights the complexity of dealing with a CRC diagnosis at a young age. Our results are useful for increasing knowledge regarding the impact on family, social and work lives of patients, gaps in service provision and providing suggestions for improvement. The creation of personalised treatment protocols incorporating holistic care is urgently needed, in order to improve outcomes for patients.
Patient priorities demonstrate that care for early-onset CRC should be holistic and include mental health support, financial advice, family planning, sexual health support, dietary advice, exercise programs and peer support as well as care related to physical wellbeing. In addition, communication regarding treatment goals and life plans is essential for early-onset CRC patients. Psychosocial support and input from a multidisciplinary healthcare team should address the unique holistic care needs of these younger patients, and the development of relevant guidelines would standardise care across the UK.
Our study has a number of strengths. It provides, for the first time, an in-depth understanding of the experiences of early-onset CRC patients during treatment, which is important given the increasing incidence observed. Our focus on the treatment phase of the patient journey is unique. The holistic nature of our study moves beyond the physical aspects of treatment, identifying patient priorities and unmet needs. In particular, the areas of unmet need identified relate to information, sex and intimacy, mental health and fertility, where there are no standardised care pathways, emphasising the importance of improving care for early-onset CRC patients.
4.2 Study limitations
Limitations include a small number of participants with metastatic disease, therefore findings may not be generalisable to early-onset CRC patients with stage IV disease. In addition, we used a convenience sampling approach which may result in selection bias. Participants who came forward to take part in our study were engaged with social media and thus were willing and interested in sharing their experiences. Nonetheless, given the lack of research into the treatment experiences of early-onset CRC patients, we feel that an exploratory approach was appropriate and that our findings are highly valuable.
5 CONCLUSION
Early-onset CRC patients are a unique group but are currently not provided for in clinical practice. Alongside research to understand optimal treatment strategies for early-onset CRC, it is vital to also address unique supportive care needs for this group of patients who require tailored care. There is an urgent need for a change in clinical practice and the development of new guidelines for early-onset CRC treatment, alongside resources with relevant information for young patients. Holistic care which takes into account their stage of life is crucial, and HCP should be aware of the social, psychological and financial challenges faced by these patients, to enable them to continue to function and thrive, with the goal of living fulfiling lives despite a cancer diagnosis.
AUTHOR CONTRIBUTIONS
Study conception and design: Ashleigh C. Russell, Helen Reid, Helen G. Coleman, Olinda Santin. Data acquisition: Ashleigh C. Russell. Data analysis and interpretation: Ashleigh C. Russell, Helen Reid, Helen G. Coleman, Olinda Santin. Drafting manuscript: Ashleigh C. Russell. Manuscript revision and final approval: All.
ACKNOWLEDGEMENTS
The research team wishes to offer our gratitude to all the participants who volunteered their time to take part in this study. Without your commitment and willing participation, this research would not have been possible. A special thank you and poignant remembrance goes to those patients no longer with us, but who inspired this research on early-onset colorectal cancer by sharing their stories on social media—particularly the late Caron Gilchrist (where it all began for our research team) and Beth Purvis (aka @BowelWarrior) who were both so supportive of our team and research. RIP. Dr. Ashleigh Russell was funded by an HSC R&D Doctoral Fellowship Award from the HSC R&D Division, Public Health Agency, Northern Ireland (EAT/5494/18) during the time of this study. Professor Helen Coleman is funded by a Cancer Research UK Career Establishment Award (Reference: C37703/A25820).
CONFLICT OF INTEREST STATEMENT
Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: Dr Ashleigh Hamilton: Bristol-Myers Squibb (independent Speaker—paid directly by BMS).
ETHICS STATEMENT
Ethical approval was granted by the Faculty of Medicine, Health and Life Sciences Research Ethics Committee at Queen's University Belfast (MHLS 21_45). All participants provided written informed consent prior to study enrolment in accordance with the Declaration of Helsinki, with a minimum of 2 weeks between consent being obtained and an interview taking place.
Open Research
DATA AVAILABILITY STATEMENT
No datasets were generated during the study. Transcripts of interviews are not available to protect participants from potential identification.
