Length of time
Prolongs period of anxiety and poor quality of life among both people found to have cancer and those with benign disease.
Increased number of consultations and diagnostic tests
May increase anxiety. Reduces patient satisfaction with care.
Little research on psychological impact.
More advanced disease at diagnosis
Associated with increased anxiety, depression, greater likelihood of post-traumatic stress disorder and poorer quality of life.
Little research on factors specifically associated with poorer psychological outcomes in the diagnostic phase.
Reduces patient satisfaction with care but little research on psychological impact.
Limited evidence suggests patients need additional information particularly after they have received test results.
7.3 The Post-diagnostic Phase
Colorectal cancer survivorship can be affected by emotional difficulties; bowel, urinary and sexual problems; negative body image; and fear of recurrence, with such problems impacting on the patient’s social life and ability to work . Such problems can be exacerbated by later disease stage at diagnosis or the receipt of adjuvant therapies. Detection of colorectal cancer via screening in asymptomatic patients picks up cancers at an earlier stage and leads to a reduction in mortality  showing that earlier detection can improve prognosis. However the relationship between diagnostic delay and stage at diagnosis in patients with symptomatic colorectal cancer is complex, with both short and long delay associated with higher mortality . While some studies have found no association between delay and mortality, the possibility that longer diagnostic delay did not impact on mortality could not be excluded (e.g. ).
7.3.1 Stage, Treatment and Emotional Difficulties
Emotional difficulties following a cancer diagnosis include depression, anxiety, and stress-related responses including post-traumatic stress disorder (PTSD). Such difficulties are often comorbid among cancer survivors . A recent meta-analysis of the prevalence of anxiety and depression among people 2 or more years post-diagnosis found anxiety rates of 17.9% (95% CIs: 12.8–23.0) and depression rates of 11.6% (95% CIs: 7.7–16.2) . A large study of patients with colorectal cancer attending cancer clinics in Scotland found marginally lower rates of depression at 7% (95% CI: 6.1–8), with higher rates among women, younger patients, and people with higher levels of deprivation . Rates of anxiety were not examined. Although symptoms of full-PTSD are typically less frequent than those of depression and anxiety, they are found in a significant minority of cancer survivors (e.g. 6.4% point prevalence, with a lifetime risk of 12.6% ).
Rates of emotional disorders such as depression and post-traumatic stress disorder are higher among cancer survivors than people with no history of the disease [56, 57], and patients with more advanced disease are more likely to report high distress  and the presence of PTSD [55, 59] than patients with earlier disease stage at diagnosis. Although distress tends to be higher shortly after patients learn the diagnosis than at later stages in their disease trajectory [22, 60], patients display different emotional trajectories over time. A longitudinal, prospective study in Australia examined distress in colorectal cancer patients from 5 months to 5 years post-diagnosis. The authors used the Brief Symptom Inventory-18 (a measure combining anxiety, depression and somatisation) and identified four different patterns of distress over time: consistently low distress (experienced by 19.4% of the sample), medium level distress (going from case to non-case, experienced by 29.4%), medium increase distress (going from non-case to case, experienced by 38.5%), and high distress (remaining at case level across time, experienced by 12.5%) . The odds of being in a distress trajectory other than the consistently low one was higher for patients with later stage disease—stages III or IV compared with stages 0, I or II (controlling for age, gender, educational level and social support). Although treatment type was a significant predictor of distress group in unadjusted analysis, it was not significant when other variables were added into the model. Examination of the different subscales found disease stage also predicted poorer trajectories of anxiety and somatisation although not depression.
Patients with more advanced disease are more likely to receive chemotherapy and radiotherapy, and higher anxiety, depression and symptoms of traumatic stress have been observed in patients who have chemotherapy or radiotherapy in addition to surgery compared with those having surgery alone , although this study did not examine the effect of disease stage independently of treatment received.
Qualitative research on the concerns of Stage II and stage III colorectal cancer survivors who had completed active treatment, found higher distress was associated with treatment-related toxicities such as peripheral neuropathy (numbness/tingling in the hands and feet), a side-effect of the chemotherapy drug oxaliplatin, and major challenges in daily activities particularly around caring for their colostomy . Oxaliplatin causes neuropathy in the majority of patients during the therapy itself, with 12% of patients experiencing persistent neuropathy 4 years after treatment . Severe peripheral neuropathy during treatment has been associated with higher rates of depression and anxiety, and poorer sleep quality , impacting on people’s ability to carry out everyday activities as well as work .
A study on symptoms among colorectal cancer patients undergoing chemotherapy, found they reported an average of ten symptoms, with the most common being peripheral neuropathy (64%), lack of energy (62%), feeling drowsy (49%), and nausea (45%), with lack of energy being one of the symptoms patients found most distressing . In a large sample study of outpatient cancer patients with different types of cancer attending a regional centre in Scotland, clinically relevant fatigue (defined as fatigue worthy of further clinical attention) was reported by 33% of colorectal cancer patients. Across the sample of mixed cancer sites as a whole, both presence of local and distal disease, and receipt of radiotherapy or chemotherapy in the previous 2 months, were independently associated with a higher likelihood of fatigue, with the majority of respondents not in active treatment . Such symptoms can impact patient distress, with this research also showing the presence of fatigue was associated with higher levels of distress (measured by the HADS) .
7.3.2 Stage, Treatment and Quality of Life
Quality of life typically comprises the patient’s subjective assessment of their physical, functional, psychological, and social wellbeing, and as such overlaps with emotional outcomes and symptoms. Poorer quality of life is often reported among patients with more advanced disease (e.g. [68, 69]). While Foster et al.  found no relationship between disease stage at diagnosis and quality of life, people with advanced disease (stage IV) were excluded from the study.
As with emotional outcomes, trajectories of quality of life in colorectal cancer survivors have been shown to vary across individuals. In a related study to the one reported earlier on trajectories of distress, Dunn et al.  looked at quality of life over time from 5 months to 5 years post-diagnosis (assessed using the FACT-C, which contains physical, functional, social/family, emotional wellbeing and colorectal cancer specific symptom subscales), and found four different trajectories: constant high quality of life (26.2%), constant medium (47.1%), medium decrease showing dramatic decrease in quality of life 2 years post-diagnosis (7.4%), and constant low quality of life (19.2%). Again, disease stage, but not treatment received, predicted membership of the quality of life trajectories “medium decrease” and “constant low” compared with reference category of “consistently high” quality of life. Neither disease stage nor treatment received predicted membership of the trajectory ‘constant medium’ compared with the trajectory of “constant high” quality of life . However other studies show links between specific treatments and their associated sequelae and quality of life.
Treatments such as radiotherapy can increase the risk of bowel and urinary incontinence . Patients with diarrhoea have reported poorer quality of life 6 weeks after potential curative surgery for colorectal cancer  and in the longer term . In a systematic review of quality of life in long-term colorectal cancer survivors (5 or more years post diagnosis) Jansen et al.  found overall quality of life was comparable with the general population with some evidence of slightly lower physical quality of life in colorectal cancer survivors. However quality of life was lower among patients with bowel problems such as diarrhea (e.g. ). Pollack et al.  looked at patients who had previously taken part in a randomised controlled trial (an average of 15 years ago, to establish whether preoperative radiotherapy reduced local recurrence in rectal cancer patients). They found higher levels of faecal and urinary incontinence and diarrhoea in patients receiving radiation compared to those having surgery alone, although only among patients who had not had a stoma.
One risk factor for non-reversal of temporary stomas is more advanced disease . Stoma-related complications, such as leakage, have been reported in over 40% of patients [74, 75]; and stomata can have adverse effects on quality of life [56, 70, 76] and impact on the patient’s body image and sexual function .
Research consistently shows an adverse effect of radiotherapy on long-term bowel and sexual functioning, but evidence concerning the long-term adverse effects of chemotherapy is mixed. For example, Arndt et al.  found chemotherapy recipients reported poorer role and social functioning 1–3 years post-diagnosis, while others found no association between receipt of chemotherapy and quality of life (e.g. ). These differences may be due to the age group being studied as more pronounced deficits are typically observed among younger age groups (e.g. under 70 ).
Perceived quality of care at the time of cancer treatment (i.e. treatment information problems, problems with the control of nausea and vomiting, and pain and discomfort) has also been shown to predict subsequent quality of life in colorectal cancer patients, controlling for demographic and clinical variables  highlighting the importance of patient-centred care during treatment for cancer.
7.3.3 Fear of Recurrence, Social Distress and Ability to Work
Among colorectal cancer survivors, 5 or more years post-diagnosis, between one quarter and one third of patients reported concerns about recurrence (27–33%), and worry about developing another type of cancer (26–30%); with a higher proportion reporting concerns about symptoms indicating a recurrence (34–41%) and worry about future diagnostic tests (41–44%) . In a study conducted in the Netherlands, fear of recurrence in colorectal cancer survivors was not associated with disease stage or treatment . However it was associated with distress and quality of life, and indirect relationships between disease stage and treatment on fear of recurrence via distress and quality of life are a possibility, and remain to be explored.
Some procedure-related concerns, such as the effects of cancer risk caused by ionising radiation associated with medical imaging, become more apparent in the post-treatment phase, while patients earlier on in the treatment process are more concerned with surviving the initial disease . This raises the possibility that an increased number of diagnostic tests may add to the worries patients experience after treatment has ended.
Disease stage at diagnosis and the type of treatment patients receive can also have wider impact. Social distress (indexed by concerns about everyday living, money worries, and concerns about oneself and other people) 12–36 months after a colorectal cancer diagnosis was higher among people with more advanced disease, those with recurrent or non-treatable disease, patients with a stoma, and among patients who had had radiotherapy . Gastrointestinal cancer survivors are more likely to be unemployed than people with no history of the disease (48.8% vs. 33.4%). Reasons given by cancer survivors for unemployment included physical limitations, and/or cancer-related symptoms . In addition, the treatment the patient receives also impacts on the psychological wellbeing of family care-givers, for example Graca-Pereira et al.  found higher anxiety and traumatic stress among partners of patients who had chemotherapy or radiotherapy in addition to survey vs. surgery alone.
Later disease stage at diagnosis adversely affects emotional and quality of life outcomes in colorectal cancer survivors. Adjuvant treatments, such as radiotherapy and chemotherapy can cause long-term symptoms such as diarrhoea or peripheral neuropathy that can also impact on patients’ quality of life and distress. In addition, having a stoma can adversely affect body image, although may reduce rectal symptoms, leaving the overall effect of having on stoma on quality of life unclear. Although associations between diagnostic delay and disease stage at diagnosis remain unclear, with more convincing associations for rectal compared with colon cancer , it remains a possibility that a delay in diagnosis of colorectal cancer may result in more advanced disease and the need for adjuvant treatments, both of which adversely affect people’s emotional and physical wellbeing for years after the initial diagnosis.
Undergoing investigations for cancer can be stressful, and rates of distress and poor quality of life among patients with suspected cancer are the same as those with a confirmed diagnosis. Rapid diagnostic pathways will reduce the period of distress for people eventually diagnosed with benign disease, and may also benefit people ultimately diagnosed with cancer, although further research is needed to confirm this. However, patients who experience diagnostic delay do not simply wait longer for a diagnosis, they also have a higher number of consultations and medical tests and are more likely to experience substandard quality care, which impacts on patient satisfaction. The psychological consequences of these experiences have been underexplored, and research into which sectors of the population are most vulnerable to adverse outcomes arising from delay is also lacking.
Priority areas for future research are summarised in Table 7.2.
Priority areas for future research
Suggested priority of further research on psychological aspects of diagnostic delay in CRC
The impact of rapid diagnostic pathways on psychological wellbeing among people diagnosed with colorectal cancer.
Better understanding of patients’ views about the relative importance of time to diagnosis versus quality of care.
Effect of particular experiences associated with diagnostic delay, such as number of investigations and consultations, as well as medical errors, and not just time to diagnosis, on psychological wellbeing and quality of life.
The role of demographic and psychological factors in vulnerability to distress in the diagnostic phase, such as age, gender, socio-economic status, history of mental illness and intolerance of uncertainty.
The impact of diagnostic delay on friends and family.
Moseholm E, Rydahl-Hansen S, Overgaard D, et al. Health-related quality of life, anxiety and depression in the diagnostic phase of suspected cancer, and the influence of diagnosis. Health Qual Life Outcomes. 2016;14:80.CrossrefPubMedPubMedCentral