Resent research suggests that patient support should be in the form of early rehabilitation programs and should be provided by the MDT. This should be delivered in a holistic way, ideally during the first year after diagnosis. It should include counseling with a psychotherapeutic approach to improve mental health, emotional functioning, and social competence . Growing research also suggests that psychotherapy, especially group psychotherapy, can reduce psychological distress and in some cases improve survival [5-7]. An SN can work with the MDT to review/help with the provision of such services.
Some patients have experienced neck or shoulder stiffness/restricted movement and/or pain that may be prolonged or lasting. Therefore it is recommended that rehabilitation should also include early physical exercise (endurance and strength training performed in groups) to improve physical performance and help patients fulfill their social roles (family, household, work) [8,15]. In order to be most effective in symptom control/rehabilitation the SN needs to
Anxiety or panic or development/worsening of anxiety disorders Frustration Anger Denial
Low mood or clinical diagnosed depression (moderate to severe) Isolation
Overwhelming dread of dying Inability to retain information (short-term memory loss)
Confusion, misconceptions, or information gaps Afraid or too embarrassed to ask physician to repeat
(or better communicate) information Emotional pain
Fear of the disease and/or the treatments (surgery or radioactive iodine) Stigma of disease/treatment Adjustment process Focusing and planning process Multiple expectations Coping with diagnosis
(needed for informed consent) Sadness and fear for the end of cherished relationships Living with fear of recurrence Rarely (but at times) palliative living adjustment Hope
Table 5.2 The role of the SN working alongside the British Thyroid Association guidelines informing the patient
The patient will be informed of the diagnosis by a member of the MDT; facilities should be available for this to be done during a private, uninterrupted consultation.
A trained nurse specialist will be available to provide additional counseling if required.
Whenever possible a relative or friend should attend the consultation and accompany the patient home.
Written information concerning thyroid cancer and its treatment and possible complications will be available to the patient.
A prognosis should not be offered before adequate staging information is available.
Patients may have difficulty understanding all this information at a single consultation and an opportunity for further exploration/discussion should be offered.
At the time of the diagnosis and treatment planning an SN can be present for support and to take notes. Subsequently at the patient's request the SN can be available to repeat this information exactly, if the patient has not been able to fully retain all the information at one sitting or needs a safe supportive environment to compose themselves before going home.This helps free the specialist to answer more specific and complicated questions for others.The presence of the SN at the initial diagnosis and treatment planning is also thought to promote the development of a good working relationship between SN and patient/carer.The SN can subsequently act as a useful advocate/ support as requested throughout the patient/carer treatment journey.
The SN can provide patients/carers with a confidential, objective, and advanced form of psychological support. An SN needs to have a good clinical insight into a patient's investigations, diagnosis, and treatment pathway to enable the support to be appropriate. Most thyroid cancers are very amenable to treatment and curable but there is a possibility of recurrence, especially in the very young and in the elderly.This can occur at any stage, but recurrence can be treated successfully, so lifelong clinical follow-up and availability of support is important.
An SN can provide support for carers while maintaining the consent and confidentiality of the patient. It must be remembered that carers may have a great deal of stress and play a key role in the patient's support/recovery. In the rare cases of medullary cell carcinoma it is sometimes, but not always, hereditary and the SN can help support the family while awaiting genetic counseling.
An SN can help coordinate the updating, accessibility, and replenishment of such specialist written information/resources. An SN can ensure patient/carer access to full resources such as: patient information booklets, patient support groups, patient information web sites, and useful contacts . An SN needs to be aware of the treatment stages and that patients may feel at times vulnerable and overwhelmed with information that is needed for full consent.The SN is in a key position to gain experience in helping the MDT best judge the sequential timing of the delivery of such information balanced with each individual patient's wishes, coping/adjustment ability, and treatment schedule.
An SN needs to acquire advanced skills in helping support patients/carers through the stress of waiting for a diagnosis by not giving false information and helping the client cope with the unknown.The SN needs to develop skills in helping patients prepare realistically for variable outcomes.
It must be remembered that patients/carers are individuals and have a myriad of positive and negative reactions to a diagnosis and treatment planning: some may be in shock. An SN can aid the MDT in clinic and subsequently by making herself available to patient/carers when they feel they are ready for more information.The SN can introduce herself to the patient/carer and leave contact details to facilitate this.
Source: Royal College of Physicians, British Thyroid Association. Guidelines for the management of thyroid cancer in adults. London: RCP,2001.
separate psychological from physical symptoms in order to best assess and re-refer the patient to the most appropriate MDT resources. This can be particularly challenging in a patient following DTC treatment as many common psychological symptoms of stress, low mood or clinical depression can also be found in thyroid hormonal imbalance or directly following surgery, as demonstrated in Tables 5.1 and 5.3.
There are many reported psychological and physical symptoms that patients may experience following thyroid cancer and its treatment apart from those reported in Tables 5.1 and 5.3. Therefore an SN needs a good clinical insight into psychological and physical symptoms in order to give appropriate support, aid the MDT to pick up any worrying clinical signs early, and to seek advice or refer to the most appropriate
Table 5.3 Reported physical and psychological symptoms of hormone replacement or calcium imbalance [4,6,12,13]
member of the MDT. This may be particularly beneficial in newly treated patients with symptoms of thyroxine or calcium imbalance or postoperative complications in order to maximize symptom control and rehabilitation. Occasionally the SN may need to help with palliative care/support. The SN may be a useful support until the appropriate formal hospital and or community palliative care team are fully in place in order to guard against the patient/carer feeling abandoned.
The Role of the SN Following Thyroid Ablation with Radioactive Iodine Therapy
Some patients will require thyroid ablation with radioactive iodine therapy. This understandably has been reported as psychologically and physically very stressful for patients and their carers on top of the hormonal physical changes due to the reduction, change, or temporary cessation of hormone replacement therapy . The role of the SN again is to offer psychological support and information alongside the MDT to deal with patient/carer concerns about treatment. The SN's role is to reduce the psychological and physical impact of the therapy by providing
Table 5.4 Reported patient key concerns regarding radioactive iodine therapy [9,17]
Isolation Separation Feeling weak/tired Anxiety/panic Low mood
Tightness in the throat and/or feel flushed - usually no more than 24 hours (may be relieved by an antiinflammatory drug) Temporary slight loss in taste Low iodine intake concerns Discharge precaution information Fear of radiation danger to self, family members, fertility, and future children support/information that enables the patient/ carer to prepare mentally and physically for such treatment. Commonly reported patient concerns regarding radioactive iodine therapy are listed in Table 5.4.
The Role of the SN During Thyroid Hormone Withdrawal (in Preparation for Treatment or Scanning Procedures)
During thyroid hormone withdrawal patients may experience symptoms that are physical and psychological which can also affect their social wellbeing [9,15]. The role of the SN is to help prepare and educate patients/carers about hormone withdrawal side effects, the fostering of realistic expectations during scanning procedures or treatment and help with balancing or temporarily rearranging family and work activities during and around this period [17,18].
The role of the SN in thyroid cancer care has developed into three main branches: the provision of information, the provision of psychological support, and help with/coordination of symptom control/rehabilitation. The SN needs to have advanced interpersonal, communication, and psychological support skills plus a sound knowledge of thyroid cancer, its treat
Dry skin Fatigue
Decreased concentration Sleep disturbance
Reduced social, work, and family activity
Reduced motor skills
Low mood or depression
Palpitations/shaky Feeling anxious Undesired weight change Overactive
Pins and needles in hands/face/feet (low calcium?) Generally feeling unwell (low calcium?)
ment and symptom control. The SN should also be aware of all the available formal and voluntary support group resources. The SN can complement the existing MDT in order to minimize the HRQOL impact of thyroid cancer and its treatment.
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