Objectives To establish symptom prevalence and associated distress in a large cohort of UK patients with cancer referred to a palliative care team.
Methods This is a secondary analysis of two large data sets of patients with advanced cancer. Each patient had completed the Memorial Symptom Assessment Scale-Short Form to assess 32 symptoms and related distress. Data frequencies were conducted in Excel.
Results 1507 patients were recruited. The most common symptoms were lack of energy (89%), pain (83%), feeling drowsy (77%) and dry mouth (70%). 67% of patients had psychological symptoms, with 31% of all patients having significant psychological distress.
Conclusions Symptom burden is significant in palliative patients with cancer. Structured symptom assessment with access to relevant supportive services is recommended.
- symptoms and symptom management
- clinical assessment
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What was already known?
Cancer patients can experience mulitple physical and psychological symptoms
Symptoms can impact negatively on cancer patients' quality of life
What are the new findings?
The most common symptoms are lack of energy, pain and feeling drowsy
A high proportion of patients experience psychological symptoms
The presence of physical and psychological symptoms can negatively impact on the quality of life of patients with cancer.1 It is important to identify distressing symptoms to manage them appropriately. Patients often do not report all problems in a regular clinical consultation.2 A patient-reported outcome measure is therefore recommended to assess an individual’s symptom burden.3
Previous data sets have assessed symptom prevalence and severity using a variety of outcome measures. The most common problems reported are pain and fatigue. However, data come from a variety of assessment tools and there is limited information about the amount of ‘distress’ an individual problem causes.4–6
This study aims to evaluate symptom prevalence and associated distress in a large cohort of UK patients with cancer referred to a palliative care team.
This is a secondary analysis of data sets from two previous studies conducted at the same site. One study assessed the prevalence of alcohol and drug use in patients with cancer and their caregivers and collected data on 507 patients with cancer.7 The other study assessed the clinical features of opioid-induced constipation in 1000 patients with cancer.8 All patients gave verbal and written consent.
The study site was a palliative care department of a UK district general hospital and cancer centre. Patients were recruited from inpatient and outpatient departments.
Inclusion criteria were a diagnosis of locally advanced or metastatic cancer, age older than 18 and ability to complete the questionnaire.
Participants were required to complete the Memorial Symptom Assessment Scale-Short Form. This is a 32-item validated questionnaire assessing physical and psychological symptoms.9 10
This analysis was conducted in Microsoft Excel and used pivot tables and relevant frequency analysis functions.
The number of patients recruited was 1507. The median age of participants was 66 years and 52% were male. The most common diagnosis was gastrointestinal cancer (52%), urological cancer (12%), lung cancer (10%) and breast cancer (8%). Performance status was ECOG 0–1 (38%), ECOG 2 (32%), ECOG 3 (26.5%) and ECOG 4 (4%).
The most common and distressing symptom was ‘lack of energy’. This was present in 89% of patients and distressed the patient significantly in 58% of cases. Pain was present in 83% (significantly distressing in 55%), feeling drowsy in 77% and dry mouth in 70%. Data are presented in table 1.
Twenty five percent of patients had more than 20 symptoms, 57% had between 10 and 20 symptoms, and 18% fewer than 10 symptoms.
Sixty-seven percent of patients had psychological symptoms of ‘feeling sad’ or ‘worrying’. Of the total patients surveyed, 31% had significant psychological distress—feeling sad or worrying ‘frequently’ or ‘constantly’.
The most common symptom in this study was lack of energy. This is consistent with other published data, although the prevalence in this study was higher. Pain was the second most common symptom, which is again consistent with previous studies. However, distressing pain was present in over 50% of patients in this study compared with 30% in other large data sets.4–6
Dry mouth was significantly more prevalent in this study compared with previous analyses (70% compared with 40%). This could be due to under-reporting; many assessment tools do not evaluate dry mouth.11
A high proportion of patients had multiple symptoms. This demonstrates the significant burden for people living with cancer and the importance of standardised symptom assessment. In clinical consultation alone fewer symptoms are discussed.2
Psychological symptoms were highly prevalent, with significant distress seen in 31% of patients. This reiterates the need to assess and support people living with cancer and have available counselling and psychological services.12
In conclusion this study demonstrates the burden of symptoms in a large data set of palliative patients with cancer.
Two studies used for secondary data analysis both received approval from the South East Coast-Surrey Research Ethics Committee as follows: Alcohol and drug use disorders in cancer patients and caregivers, approved on 5 April 2016 (IRAS 198753/REC 16/LO/0631); An observational study of diagnostic criteria, clinical features and management of opioid-induced constipation in patients with cancer pain, approved on 12 June 2017 (IRAS 222105/REC 17/EM/0212).
Contributors Each author made considerable contribution to the study and met the full requirements for authorship. KW is the guarantor responsible for the overall content and is the primary study chief investigator. She takes responsibility for planning, conduct and reporting of work. AND was chief investigator on opioid-induced constipation study and was involved in planning of the work, data analysis and reporting. CL and MW were involved in the conduct of the work and reporting of data.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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