Patient-Centredness and Patient-Reported Measures (PRMs) in Palliation of Lung Disease

Florence Nightingale, nurse and public health practitioner, was a forerunner in outcome assessment (Appleby J, Devlin N. Measuring success in the NHS. In: Using patient-assessed health outcomes to manage the performance of health care providers. London: King’s Fund/Dr Foster; 2004). Clinical outcome assessment (COA), an overarching term for patient-related outcomes, is subcategorised by changes observed/reported by either the patient, clinician or non-clinician or measurable physiological changes. A phenomenal evolution in medical technology has fuelled disease prevention, diagnosis and treatment and patient survival. The utlisation of patient-centred healthcare outputs has progressed more slowly.

Patient-centred concepts motivate and empower patients’ voice and sense of control despite life-limiting health conditions. They promote the biopsychosocial perspective and shared decision-making through a therapeutic alliance (Michie et al., Patient Educ Couns 51:197–206, 2003; Mead and Bower, Soc Sci Med 51:1087–110, 2000; Saha et al., J Natl Med Assoc 100:1275–85, 2008) essentially driven by respect for the patient. Patient-centred concepts are integrated into clinical care, policy-making, research design and methodology and inform instrument development. ‘Nothing about us, without us’ strengthens the patient voice and participation (Chu et al., BMJ 354:i3883, 2016).

Palliative care epitomises patient-centred care values and principles: palliating symptom distress and optimising health-related quality of life (HRQoL). Palliation requires responsiveness to the patient’s changing experience of their fluctuating health condition and life circumstances.

‘Patient-centredness’, a contemporary buzzword for healthcare excellence, belies patients being consistently at the centre of healthcare. The survival of patient-centred approaches struggles against a revenue-centred healthcare industry, wherein myopic financial-centred analytics may diminish the value and resources of patients and care team members. Patient-centred outcomes research (PCOR) strives to meet these challenges in optimising healthcare, through integrating patient perspectives, priorities, preferences, beliefs and values with patient-valued outcomes and long-term fiscal health.

This chapter outlines patient-centred strategies associated with COAs including patient-reported measures (PRMs) of outcomes, experience and motivation, the lived experience and treatment preferences that optimise clinical and research environments in palliative care in lung disease, therapeutic relationships and data collection to support policy and patient-centred infrastructure. This chapter is designed to support the content of the subsequent chapters of this textbook.