A Pilot Randomized Controlled Trial of a Holistic Needs Assessment Questionnaire in a Supportive and Palliative Care Service

Abstract

This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardized holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan.

Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

“…The SPARC questionnaire is recognised within the UK National Health Service as a way to help address and improve end-of-life care management [5,6,9,24]. We have utilised a unique clinical cohort of patients with IPF [19], determining that items specified within the IPARC list can identify patients at high risk of death within 3-6 months, providing opportunity for earlier supportive care and improving patient outcomes (Box 1).…”

“…Such systematic assessment provides a useful indication of symptom distress [8]. Yet those who suffer chronic disease may not achieve the SPARC criteria for immediate clinical assessment, defined as a score of 3 in a single question, as habituation or affective comorbidity can affect symptom perception [5,9,10]. Regular completion of 45 items can be burdensome for those who suffer most [8], whilst self-assessment may result in interpatient differences despite the same underlying distress.…”

Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

“…The original SPARC questionnaire collects distress information from an extensive list of possible issues, with a response of ‘very much’ (score of 3) in any of the 41 scaled items acting as a flag that the individual would benefit from an immediate palliative care assessment. Within clinical settings, the SPARC questionnaire could be considered too sensitive, or excessive depending on health status [6, 9], whilst underreporting of distress is an issue in progressive disease [10, 31]. Use of the cumulative score over 11 items provides greater opportunity to capture distress when underreported, whilst shorter health questionnaires can provide similar insight to lengthier ones [32].…”

Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

“…11,12 Unfortunately, instruments used in the assessment of typical children are not easily adapted for use with children with complex illnesses cared for under the umbrella of PPHC. 11,13–15 To date, no practice-derived, theory-based, empirically validated, comprehensive tool exists to assess the evolving needs of children receiving PPHC and their families. 13…”