Colorectal cancer has a significant psychosocial impact on the individual and it is important to develop strategies to deal with this.⁴¹ In this section, the following issues are addressed: interventions to alleviate the impact of a diagnosis of colorectal cancer; information required by patients and their families to cope with and understand colorectal cancer; methods and sources of communication; involving the patient in the decision-making process and the role of specialist nurses within the multidisciplinary team.

3.1 Interventions to alleviate the impact of colorectal cancer

Psychological distress is common in patients with all forms of cancer and usually remains undetected.⁴² Diagnosis is difficult because the symptoms of depression, anxiety, effects of treatment, and the cancer itself, overlap. Furthermore, differentiating depression from profound sadness and from demoralisation is not easy. Core features of depression include: persisting negative thoughts about self and the future, inability to take pleasure from day to day activities and a wish to self-harm. Biological features such as insomnia are commonly due to the cancer itself and its treatment. Liaison psychiatrists are in a good position to advise on diagnosis and the use of medication in patients with psychological effects of physical illness. Evidence level 3

There is some evidence that providing emotional and practical support may have a positive effect on patients’ well being, although the types of help offered are very varied.⁴³ As there are many national and local support services (eg BACUP, Macmillan, clinical nurse specialists, liaison psychiatry, “drop-in” centres, day centres, complementary therapy services etc.) it is important that only those services which are relevant to the individual are offered. Evidence level 3

Relatives of patients with cancer can have just as great, if not greater concerns than the patients themselves, and psychological morbidity can be detected in up to 50% of relatives.^{44, 45, 46, 47} Evidence level 3

Information about local support services should be made available to both the patient and their relatives.

Clear follow up arrangements to see specialists should be made as waiting and uncertainty add to distress. The reasons for these arrangements should be explained to the patient.

Systematic reviews of observational studies show that after potentially curative surgery, patients continue to experience problems in all areas of quality of life.^{48, 49, 50} There is also evidence that, although the prevalence of postoperative symptoms is greater after techniques which result in permanent stoma formation, sphincter-saving operations do not necessarily result in a good quality of life.^{48, 49, 50} There is no strong evidence that adjuvant chemotherapy adds to patient distress, however, patients do find the wait to see an oncologist particularly difficult.⁵¹ Evidence level 2++,2+,3

Clinicians must be aware of the potential for physical, psychological, social and sexual problems after all colorectal cancer surgery, including sphincter-saving operations.

3.2 Information required to cope with and understand colorectal cancer

Many cancer patients and their relatives feel poorly informed, and most patients prefer to have as much information about their illness as possible.⁴⁷ Some patients do not want extensive information, and the reasons for this may be complex.⁵² In patients with colorectal cancer the greatest need for information appears to be at diagnosis; after discharge from surgery while waiting for an oncology appointment to discuss chemotherapy; and on completion of chemotherapy.⁵¹ Evidence level 3

Health professionals should appreciate that information helps patients to understand how their disease may affect them and to anticipate problems and plan their lives.

Patients should be offered the amount of information that is appropriate to their wishes in a way which is sensitive, understandable and accurate.

3.3 Methods and sources of communication

Complaints from cancer patients about poor communication with healthcare professionals and lack of continuity of care are common. There is evidence that training programmes for nurses can improve listening and communication skills.⁵³ Although the included trials were small and heterogeneous, one systematic review has suggested that providing a record of the consultation with a specialist can increase both the amount of information recalled and satisfaction with the information given.⁵⁴ One randomised trial showed that patients preferred information based on their own medical records rather than general information about their type of cancer.⁵⁵ Evidence level 1+

Listening and explaining skills can be improved by high quality courses, and all healthcare professionals in cancer care should undergo such training.

Healthcare professionals in cancer care should consider giving either written summaries or audio-tapes of consultations to people who have expressed a preference for them.

3.4 Involving the patient in the decision-making process

There is increasing evidence that cancer patients wish to be more involved in making decisions regarding their own care than clinicians may think.⁵⁶ One systematic review of a large number of controlled studies was only able to conclude that interventions aimed at facilitating decision making are under-researched and that there was a need for more and better randomised trials.⁵⁷ In a single descriptive study it was found that colorectal cancer patients preferred a more passive role in decision making than breast cancer patients, and this may be age- and sex-related.⁵⁸ Evidence level 1+,2++,3

Healthcare professionals should respect patients’ wishes to be involved when making plans about their own management.

Patients should be given clear information about the potential risks and benefits of treatment, in order that they can make choices.

Severe physical symptoms should be addressed before patients are asked to make complex treatment choices.

3.5 The role of specialist nurses within the multidisciplinary team

Patients with cancer often have complex needs that cannot be addressed by a single specialty or discipline. This has led to the development of multidisciplinary teams within Managed Clinical Networks to ensure a consistent and equitable approach to planning and managing care. It is now recognised that the clinical nurse specialist (CNS) should be an integral part of this network.^{59, 60} A key component of the CNS role is to coordinate care between settings in addition to providing support, advice and information for patients and their carers throughout their illness.

All patients newly diagnosed or with a suspected diagnosis of colorectal cancer should have access at diagnosis to a clinical nurse specialist (CNS) for support, advice and information.

Patients with colorectal cancer who require stoma formation generally experience more problems than those who do not and the support and advice of a stoma nurse specialist is widely acknowledged to be of considerable value.

All patients who may require stoma formation (permanent or temporary) should be referred and assessed by a stoma nurse specialist before admission to hospital.