Perceived symptom manageability - synthesis of a new use of a known concept based on a sample of HIV outpatients

Symptom management issues are regularly discussed in medical follow-up appointments, however, despite the integration of patients' perspectives in symptom management negotiations, traditional-ly used measures (i.e., symptom severity and frequency) to identify symptoms that need management do not seem to capture the patient's needs and, consequently, patients' expectations are frequently unmet 141. Although symptom frequency, symptom severity, and associated distress or bother are considered core indicators of the patient's individual experience of perceived symptoms 13,60,75,142,143, they do not truly cap-ture the wholeness of PLWHs' lived experience associated with symptoms in the chronic phase of the HIV trajectory. Therefore, they only allow the identification of a limited number of symptoms that need man-agement due to symptom expression and associated distress. Moreover, symptom lists that were invented before cART was widely available may not have been adapted to new symptom profiles, and are of limited value to capture symptoms of concern to patients in a chronic phase. Subjective illness theories, such as the Common sense Theory by Leventhal et al. (1992) support the assumption that objective measures may be of limited importance to patients, as illness perception is greatly determined by individual concepts and interpretations. Patients, according to this model, base the assessment of symptoms that need management not only on symptom expression, but rather on a combination of their own interpretation of perceived symptoms, illness representation (e.g., cause, time-line, control), personal (such as demographic and cul-tural) factors, and social support. Moreover, these factors are mutually influential and individual weighted. Symptom severity or frequency, thus, may or may not be the most important aspects when pa-tients express concern about a symptom. Moreover, to our knowledge, there is no instrument or concept currently used which integrates dimensions of daily living with HIV to identify symptoms that need man-agement in the chronic phase of HIV. The most promising approach to caring for patients with chronic diseases is to approach the illness as a collaborative endeavor, acknowledging the patient as an expert of his condition, living context, and emotional situation. Health care providers and patients not only exchange information but also are partners for negotiating approaches to symptom self-management in every-day life. Comparing the parameters used to identify symptoms that need management and those important for patient self-management in daily life, it becomes clear that the patient perspective on consequences of a symptom for daily life are often neglected.
In order to assess a patient's unique and individual perception of symptoms that need management, and in the future, the success of symptom management interventions, we therefore propose to use a meas-ure representing this individuality and uniqueness. As in clinical encounters, patients often describe their life with symptoms using sentences like "I can't manage symptom x or y anymore", or "well, yes, symp-toms are well manageable," thus directly referring to their ability to influence the impact of the symptoms on their life, we suggest "perceived symptom manageability" to meet this condition: the patient is the only person who is able to assess the perceived manageability of a symptom in the context of his or her lived experience.