Person-Centered Assessment of Symptom Clusters in Cancer Care

We all know that cancer and its treatments entail a plethora of distressing concurrent symptoms for the vast majority of patients in both the short and long term. Based on symptom theories such as the Theory of Unpleasant Symptoms1 and a growing body of symptom research, the evidence is clear that symptoms appear as clusters, eg, pain, fatigue, and insomnia.2,3 As a cancer patient, you are dependent on meeting professional cancer nurses who have the skills, competence, interest, and willingness to help and support regarding symptom cluster management. If undertreated, they will have a negative impact on patient-reported outcomes such as functional status, health, and quality of life.4 How symptom clusters are experienced differs between individuals depending on situation, culture, and context. The patient is the owner of the symptom cluster experience, and therefore, the symptom cluster management has to be based on the patient narrative in order to be effective. In a previous guest editorial,5 we argued for the value of using symptom theory to ensure evidence-based and person-centered symptom cluster management in cancer care. Building on that, we now will argue for the importance that cancer nurses conduct the first step of the symptom management process, ie, screening and assessing symptom clusters using patients’ own subjective descriptions. Inadequate symptom cluster management often stems from an incomplete and inadequate assessment. Simply asking patients to report their symptoms ad hoc in an unsystematic way is neither effective in identifying symptoms nor in assessing the distress and total burden of symptoms. The assessment of symptoms must be based on acknowledging that the experience of symptoms is personal and subjective. Hence, the assessment of symptom clusters in patients with cancer must be structured and consider all dimensions of the symptom experience along with an assessment of antecedents and consequences in order to be holistic.1,6 In addition, cancer nurses must acknowledge and understand that patients’ symptom clusters change regarding both constellation and burden as well as meaning throughout the journey of treatment and care. The assessment must be evidence-based, which means that valid and psychometrically tested instruments developed for the relevant context are used and are easy to use in the clinic. Therefore, it must be clear and concise what the instrument assesses (and does not assess) so that it is easy to complement the assessment with open-ended questions to ensure a holistic assessment of the patient’s symptoms taking the total situation into account, that is, an instrument for symptom assessment simple enough to be used daily in clinical practice and accurate enough to provide a solid basis for the assessment. Symptom assessment is made efficient by performing a global screening of symptoms before performing a complete assessment. Hence, the first step is screening the patient’s full range of symptoms in terms of frequency and intensity. Thereafter, the second step comprises a full and complete assessment of specific symptoms, based on which symptom(s) the patient describes as most distressing and/or burdensome, ie, the key symptom. Individually tailored interventions to prevent or reduce the intensity of the experienced symptom clusters and the associated distress are crucial. Hopefully, a 2-step assessment can be the way forward to identify the key symptoms in clusters and, in the long term, contribute to a more effective symptom cluster management. However, more detailed and specific instruments adapted to various diagnoses and contexts may be needed to ensure an evidence-based person-centered assessment of symptom clusters in cancer care. Cecilia Olsson, PhD, RN, OCNDepartment of Health Sciences, Karlstad University, Sweden, and Department of Bachelor in Nursing, Lovisenberg Diaconal University College, Oslo, NorwayMaria Larsson, PhD, RN, OCNDepartment of Health Sciences, Karlstad University, Sweden