Psychosocial care

From Cancer Guidelines Wiki


The diagnosis and treatment of cancer presents a major and stressful life event that can reduce quality of life in the short and long term. Apart from the existential challenge faced by all patients with a life-threatening disease, patients with colorectal cancer have specific challenges.

Before their operation, people with colorectal cancer commonly experience fear, isolation and uncertainty, and have a high need for information and support.[1] Postoperatively, patients may experience physical, social and psychological challenges, especially if they have a new stoma.

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Overview of evidence (non-systematic literature review)

No systematic reviews were undertaken for this topic. Practice points were based on selected evidence. Please see guideline development process for more information.

Physical challenges

Postoperative physical challenges include bowel issues, such as frequent bowel movements, constipation and diarrhoea. Patients with stomas may face leakage, skin and stoma problems, and odour.[2][3]

Sexual dysfunction is also very common among people with colorectal cancer, with sexual dysfunction rates following rectal surgery ranging from 23% to 69% in men and 19% to 62% in women.[4] Problems with erectile function and ejaculation have been reported in men,[5] and women have experienced dyspareunia, vaginal dryness and pain interfering with sexual pleasure after surgery.[6] Some patients experience a disturbed body image,[7] which can lead to low self-esteem and exacerbate sexual dysfunction.

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Social challenges

Patients who have undergone surgery for colorectal cancer (especially those with stomas) may avoid and fear social interactions, and experience disrupted intimate relationships due to body changes, changes in roles, social restrictions and sexual dysfunction.[7][8]

Psychological challenges

Cognitive dysfunction

The effects of chemotherapy on cognitive function have been assessed in patients with colorectal cancer, as for those with other cancers. A recent meta-analysis of 13 relevant studies[9] found evidence of impairment in executive function and memory in patients of all ages. Longer treatment duration, but not shorter time since treatment, was associated with worse impairment.[9]

Anxiety and depression

Many patients with colorectal cancer experience moderate-to-severe anxiety and depression. In a population-based Australian sample of 1966 colorectal cancer survivors assessed at six time points from 5 months to 5 years post diagnosis,[10] the prevalence of high overall distress ranged between 44% and 32%. The study[10] identified four trajectories of distress – some declining, and others (38.5% of the sample) steadily increasing over time. Other studies have reported clinical levels of depression in 8–23% of people with colorectal cancer and anxiety in 16– 39%.[11][12][13][14]

Distress affects survival rates

Patients’ distress is important, not only because of its impact on quality of life, but also its impact on survival. Quality of life has been reported to predict survival in patients with advanced colorectal cancer.[15] Depression has also been found to influence survival in a population-based sample of 1074 colorectal cancer survivors in the Netherlands.[16] In analyses adjusted for metastasis and other potential confounders, depressive symptoms significantly increased the risk of death among 1-year to 10-year colorectal cancer survivors (hazard ratio [HR] 1.88; 95 % CI, 1.24–2.83; p < 0.01) and even more in 1-year to 2-year colorectal cancer survivors (HR, 2.55; 95 % CI, 1.44–4.51; p < 0.001).[16] Thus depression has the highest negative effect on survival in the first 1-2 years, but this effect extends out to 10 years post-diagnosis.

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Who is more vulnerable to anxiety and depression?

A number of studies have explored predictors of anxiety, depression and distress among people with colorectal cancer. However, a recent systematic review[17] noted that most studies were cross-sectional and psychosocial variables have been poorly studied.

Many of the factors associated with anxiety, depression and distress may be modified with appropriate intervention.

Factors that were associated with an increased risk of developing anxiety include:[14]

  • more, or more severe, symptoms such as poor self-reported cognitive functioning, dyspnoea and diarrhoea
  • financial difficulties.

Factors that were associated with an increased risk of developing depression include:[14]

  • neo-adjuvant radiotherapy
  • poor physical, cognitive or social functioning
  • difficulties with personal care and communicating with others.

Factors that were associated with an increased risk of developing distress include:[10]

  • male sex
  • younger age
  • lower education
  • poor socioeconomic advantage
  • poor social support
  • late disease stage
  • pre-diagnosis anxiety, pessimism and a distressed personality style.[17]

The investigators of an Australian prospective survey of colorectal cancer survivors[10] concluded that, based on their higher levels of distress, men who are younger, and with low education and poor social support, should be a priority for targeted intervention.

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Family distress

There is also evidence that families of people with colon cancer experience considerable distress, particularly if the person has metastatic disease.[18] In a large Australian study of patients with advanced cancer in the palliative care setting,[19] evidence of substantial psychological distress warranting specific support was identified in up to half of the patients (20% of whom had colorectal cancer), one-third of their spouses and one-quarter of their offspring. For people in palliative care, this distress reverberates through the family in such a way that both patient and family-centred models of care need to be adopted.

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Psychological care and treatments

The importance of psychosocial care is recognised in the 2003 national guideline Clinical practice guidelines for the psychosocial care of adults with cancer.[20] This guideline is a useful evidence-based source for practising clinicians.

Persisting unmet need

Despite widespread acceptance that psychosocial care is integral to quality cancer care, psychological morbidity is often undetected and underestimated in busy cancer services,[21] and people with cancer continue to experience high levels of unmet need for psychosocial care.[22] ColorectalReferring to the large bowel, comprising the colon and rectum. cancer patients report many deficiencies in their supportive care.[23]

ScreeningPerforming tests to identify disease in people before any symptoms appear. for distress

Because anxiety and depression are often under-detected, international guidelines recommend routine screening of all cancer patients for psychological distress, using validated, reliable, objective measures.[24] The International Psycho-Oncology Society (IPOS) and 68 affiliated organisations have set a standard of care involving monitoring distress as the ‘6th vital sign’. The authors of an Australian study that measured distress in colorectal cancer survivors[10] recommend that screening should occur not only at diagnosis, but also at key points of the illness trajectory and into survivorship, to ensure that late-onset distress is not missed. Recent Australian clinical guidelines for screening for, and managing, anxiety and depression in cancer patients[10] recommend the following tools to screen for distress: the 1-item “Distress Thermometer” (with 39 problem areas to tick)[24] and the 9-item ESAS (Edmonton Symptom Assessment Schedule).[25]

Psychological intervention

There is now a large evidence base, summarised in meta-analyses and systematic reviews, demonstrating that interventions for distress in patients with cancer are effective in the short and long term.[26][27][28][29] A recent review of psychological interventions specifically in colorectal cancer,[30] which identified 11 studies meeting inclusion criteria, found that psychosocial interventions (including educational interventions, cognitive–behavioural therapy, relaxation training and supportive group therapy) for colorectal cancer patients reduced length of hospital stay, days to stoma proficiency, and anxiety and depression, and improved quality of life.

Relaxation-based therapies are greatly beneficial in reducing anxiety, treatment-related phobias, conditioned nausea and vomiting, and insomnias.[31] Both cognitive–behavioural and supportive–expressive therapies are effective in countering existential fears of dying, aloneness, meaninglessness and unrealistic fears about processes of treatment.[26] Early referral for specialist support from a clinical psychologist or liaison psychiatrist is worthwhile when symptoms of distress or high risk become evident. One study has also shown that peer support (face-to-face group or individual by phone) is feasible, acceptable and appreciated by colo-rectal patients, although efficacy of this intervention has not yet been evaluated.[32]

Randomised controlled trials of early versus late referral to palliative care services show strong evidence of the benefits of early referral in reducing time spent in hospital, enhancing symptom control, increasing family satisfaction, and permitting death to occur in the desired location.[33] Early referral to community-based domiciliary palliative care services support and information, where available, may have several benefits and enhance quality of life. Support can be provided by various health disciplines with appropriate training.

Practice pointA recommendation on a subject that is outside the scope of the search strategy for the systematic review, based on expert opinion and formulated by a consensus process.Question mark transparent.png

Patients with colorectal cancer should be screened for psychological distress at diagnosis and key points in their disease trajectory.

Practice pointA recommendation on a subject that is outside the scope of the search strategy for the systematic review, based on expert opinion and formulated by a consensus process.Question mark transparent.png

Psychological interventions should be a component of colorectal cancer care, as they can improve the quality of life for patients with cancer.

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Information needs and decision aids

Providing information to patients

Surveys of patients with cancer repeatedly identify information provision as a major unmet need.[21] Research has shown that the provision of adequate information is related to increased psychological wellbeing.[34] Effective communication skills, which can be learned through facilitated communication skills training, ensure that this information is clearly explained and understood.[35]

Six main principles of information provision for cancer patients are relevant to the care of people with colorectal cancer patients:

  • Treatment options should be explained clearly, with realistic information about potential effectiveness and adverse effects.
  • Patients should be invited to guide the clinician to provide the level of detail they wish to receive and to enable their desired level of active involvement in decision making.[36]
  • Clinicians should review both the person’s understanding of the information, and their reactions to it, as a means of increasing integration and providing emotional support.
  • Written materials should be provided, and clinicans should consider offering audio recording of key consultations.[33] The involvement of a specialist nurse or counsellor, provision of a follow-up letter, and participation in psychoeducational programs may also assist in recall of information.[37][38]
  • Information should be made available over time and, if desired, review appointments that allow time for further integration of information should be scheduled.
  • Patients’ carers and families should also be kept well informed.

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The role of decision aids

Some decisions in colorectal cancer are ‘preference sensitive’; that is, the optimal decision is one that is consistent with patient values and preferences. Shared decision making is a model that seeks to include both patients and their healthcare providers in the decision making process. It encourages patients to play an active role in decisions concerning their health, which is a goal of patient-centered care.[39]

Shared decision making can be facilitated by patient decision aids, which are defined as interventions designed to help people make specific and deliberative choices among options by providing information on the options and outcomes relevant to the patient’s health status.[40] The effectiveness of decision aids has been demonstrated in at least three separate systematic reviews.[35][41][42]

Decision aids have been shown to:[35][41][42]

  • improve patient knowledge
  • lower decisional conflict related to feeling uninformed and unclear about personal values
  • reduce the proportion of people who were passive in decision making post-intervention
  • improve agreement between patient values and health care option chosen.

Only a few decision aids have been developed and evaluated for colorectal cancer treatment. In an Australian-US collaboration,[43] a decision aid was developed for patients with advanced colorectal cancer who are considering first-line chemotherapy and reviewing treatment options, prognostic information, and toxicities. In a randomised controlled trial with 207 patients, patients receiving the decision aid demonstrated a greater increase in understanding of prognosis, options, and benefits, with higher overall understanding (P < .001), compared with patients who received a standard medical oncology consultation. Anxiety was similar between groups, and decisions were not affected; 74% chose chemotherapy, 7% supportive care alone, and 10% observation.

Another trial evaluating a decision aid for people with colorectal cancer has been registered, but has not yet reported results. The decision aid addresses the two surgical options for rectal cancer patients: low anterior resection with re-establishment of bowel continuity, and abdominoperineal resection with a permanent stoma. The decision aid is currently being piloted and a barriers analysis, exploring factors that might hinder introduction into routine care, is planned to follow. Further work on decision aid development for colorectal cancer treatment is required.

Practice pointA recommendation on a subject that is outside the scope of the search strategy for the systematic review, based on expert opinion and formulated by a consensus process.Question mark transparent.png
  • The use of decision aids should be considered for preference-sensitive decisions about treatment for colorectal cancer.
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