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. 2022 Dec 9;6(1):124.
doi: 10.1186/s41687-022-00531-1.

Development of a set of patient reported outcome measures for patients with benign liver tumours and cysts: patient focus groups and systematic review

Alicia Furumaya #  1   2 , Lynn E Nooijen #  1   2 , Martijn P D Haring  3 , Hedy A van Oers  4   5 , Marlou van Beneden  6 , Belle V van Rosmalen  1   2 , R Bart Takkenberg  2   7 , Geert Kazemier  8   9 , Marc G Besselink  1   2 , Vincent E de Meijer  3 , Joris I Erdmann  10   11 ; Dutch Benign Liver Tumor Group
Affiliations

Development of a set of patient reported outcome measures for patients with benign liver tumours and cysts: patient focus groups and systematic review

Alicia Furumaya et al. J Patient Rep Outcomes. .

Abstract

Background: Patient reported outcome measures (PROMs) may be useful for patients with benign liver tumours and cysts (BLTC) to evaluate the impact of treatment and/or guide shared decision making. Yet, a set of PROMs relevant to patients with BLTC is currently unavailable. In this study, we selected a PROMs set for patients with BLTC.

Methods: Potentially relevant patient reported outcomes (PROs) were selected by psychologist-researchers based on keywords used or suggested by participants of two virtual focus groups meetings consisting of thirteen female BLTC patients with a median age of 50 years. Subsequently, patients were asked to report their most relevant PROs. PROMs identified by systematic literature review and computerized adaptive tests (CATs) in the Patient-Reported Outcomes Measurement Information System (PROMIS) were considered in selecting the final PROMs set to assess relevant outcomes.

Results: The most important PROs were: insecurity/anxiety (11/12 patients), pain (9/12 patients), fatigue (8/12 patients), and limitations in daily life (5/12 patients). The literature review included 23 studies, which used various generic and disease-specific PROMs, often not measuring (all) relevant PROs. The final selected PROMs set included numerical rating scales for pain, two questions on overall health and quality of life and four PROMIS CATs.

Conclusions: A PROMs set generically and efficiently measuring outcomes relevant for patients with BLTC was developed and may be used in future research and clinical practice.

Keywords: Benign liver tumours; Patient reported outcomes; Symptoms.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Quantitative assessment of PROs for patients with BLTC identified in the focus groups. Figures show the number of patients noting the PRO in their top-five of most important PROs. a In focus group 1, including patients with HCA (n = 4). b In focus group 2, including patients with FNH, hepatic hemangioma and simple hepatic cysts (n = 8)
Fig. 2
Fig. 2
Flowchart of the study selection process for the systematic review of candidate PROMs
See this image and copyright information in PMC

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