Patient reported outcome and experience measures among patients with central venous access devices: a systematic review

Abstract

Purpose: Patients receiving treatment for solid tumours and haematological malignancies, among other acute and chronic health conditions, are highly dependent upon central venous access devices (CVADs) for administering chemotherapy and other complex therapies; thus, CVADs can meaningfully impact their health outcomes and experiences. This systematic review aimed to identify and critique patient-reported outcome measure (PROM) and patient-reported experience measure (PREM) instruments related to CVADs.

Methods: A systematic review was undertaken, commencing with an electronic search of health databases (April 2022). Studies were eligible if they used a self-reporting instrument (questionnaire) to quantitatively measure patient-reported outcomes and experiences related to CVADs (English only). Using a piloted data-extraction tool, two authors independently identified studies for full review, data extraction, and quality assessment. Data were synthesised narratively.

Results: The search yielded 875 titles, of which 41 met the inclusion and no exclusion criteria. Of these, 31 reported results of purpose-built questionnaires; a further six reported results of generic measures used for CVADs; four included both purpose-built and generic measures. Overall study quality was low; only two studies evaluated both content validity and internal consistency. In total, 155 unique PROM items (across 27 studies) were extracted which encompassed five domains (e.g., 'Instrumental activities of daily living'; 'Pain and discomfort'). Similarly, 184 unique PREMs (from 31 studies) included 13 domains (e.g., 'Shared decision-making'; 'Education').

Conclusion: Increasingly, research and quality improvement studies about CVADs are incorporating PROM and PREM. These measures are largely purpose-built, however, and their validity and reliability have not been sufficiently established for use.

Review registration: Prospectively submitted to the International prospective register of systematic reviews (PROSPERO) 05 July 2020.

Keywords: Central venous access device; Patient reported experience measures; Patient reported outcomes measures; Quality of life; Systematic review.