An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care: GP Think Aloud and Patient and Carer Interviews.

Abstract

Objectives:This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging technology from patients’ and carers’ perspectives.Methods:A computer screening program electronically searches primary care records in routine clinical practice to identify patients with advanced illness who are not already on a PCR. Five GPs were asked to “think aloud” about adding patients identified by computer screening to the PCR. Key informant interviews with 6 patients on the PCR and 4 carers about their experiences of palliative care while on the PCR and their views of this technology. Data were analyzed thematically.Results and Conclusions:Using computer screening, 29% additional patients were added by GPs to the PCR. GP decision-making for the PCR was informed by clinical factors such as: if being treated with curative intent; having stable or unstable disease; end-stage disease, frailty; the likelihood of dying within the next 12 months; and psychosocial factors such as, age, personality, patient preference and social support. Six (60%) patients/carers did not know that they/their relative was on the PCR. From a patient/carer perspective, having a non-curative illness was not in and of itself sufficient reason for being on the PCR; other factors such as, unstable disease and avoiding pain and suffering were equally if not more, important. Patients and carers considered that computer screening should support but not replace, GP decision-making about the PCR. Computer screening merits ongoing development as a tool to aid clinical decision-making around entry to a PCR, but should not be used as a sole criterion. Care need, irrespective of diagnosis, disease trajectory or prognosis, should determine care.