Using Patient-Reported Outcome Measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney disease (PRO-trACK project): a mixed-methods project protocol

IntroductionPatients undergoing haemodialysis (HD) for end-stage kidney disease often report a poor quality of life (QoL) and identify that improving QoL has a higher priority for them than improvements in long-term survival. Research suggests that regular collection and usage of patient-reported outcome measures (PROMs) in patients with chronic conditions may reduce hospitalisation, improve QoL and overall survival. In the UK, despite increased use within research settings, PROMs have not been introduced into the routine clinical care for patients undergoing HD.We report the protocol for ‘Using patient reported outcome measures (PROMs) to promote quality of care in the management of patients with established kidney disease requiring treatment with haemodialysis in the UK—PROM-HD’. The study aim is to investigate the methodological basis for the use of routine PROMs assessment, particularly using electronic formats (ePROMs) within clinical and research settings, to maximise the potential of PROM use in the management of the care of this patient group.Methods and analysisThe project will use qualitative methodology to explore, by thematic analysis, the views, perceptions and experiences of patients receiving HD and members of the HD multidisciplinary team regarding the collection and use of PROMs in routine clinical care, particularly ePROMs. This will involve interviews with up to 30 patients or until saturation is achieved and three focus group sessions with approximately 18 members of the clinical team delivering care to this patient group, which will be interpreted broadly to include both professional and non-professional staff.

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Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease – a four-phase mixed methods study

BMC Nephrology ◽

10.1186/s12882-019-1521-9 ◽

2019 ◽

Vol 20 (1) ◽

Cited By ~ 7

Author(s):

Esmee M. van der Willik ◽

Yvette Meuleman ◽

Karen Prantl ◽

Giel van Rijn ◽

Willem Jan W. Bos ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Mixed Methods ◽

Kidney Disease ◽

Symptom Assessment ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Mixed Methods Study ◽

Advanced Chronic Kidney Disease ◽

Patient Reported ◽

Selection Of

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Importance of patient reported outcome measures versus clinical outcomes for breast cancer patients evaluation on quality of care

The Breast ◽

10.1016/j.breast.2016.02.015 ◽

2016 ◽

Vol 27 ◽

pp. 62-68 ◽

Cited By ~ 13

Author(s):

Melissa Kool ◽

Joost R.M. van der Sijp ◽

Judith R. Kroep ◽

Gerrit-Jan Liefers ◽

Ilse Jannink ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Care ◽

Cancer Patients ◽

Clinical Outcomes ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Breast Cancer Patients ◽

Patient Reported

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Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review

PLoS ONE ◽

10.1371/journal.pone.0179733 ◽

2017 ◽

Vol 12 (6) ◽

pp. e0179733 ◽

Cited By ~ 35

Author(s):

Olalekan Lee Aiyegbusi ◽

Derek Kyte ◽

Paul Cockwell ◽

Tom Marshall ◽

Adrian Gheorghe ◽

...

Keyword(s):

Systematic Review ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Adult Patients ◽

Measurement Properties ◽

Patient Reported

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Improving quality of care through patient-reported outcome measures (PROMs): expert interviews using the NHS PROMs Programme and the Swedish quality registers for knee and hip arthroplasty as examples

BMC Health Services Research ◽

10.1186/s12913-018-2898-z ◽

2018 ◽

Vol 18 (1) ◽

Cited By ~ 18

Author(s):

Birgit Prodinger ◽

Paul Taylor

Keyword(s):

Quality Of Care ◽

Outcome Measures ◽

Hip Arthroplasty ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Expert Interviews ◽

Patient Reported ◽

Knee And Hip Arthroplasty

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Patient-reported outcome measures for acne: a mixed-methods validation study (acne PROMs)

BMJ Open ◽

10.1136/bmjopen-2019-034047 ◽

2021 ◽

Vol 11 (3) ◽

pp. e034047

Author(s):

Samantha Hornsey ◽

Beth Stuart ◽

Ingrid Muller ◽

Alison M Layton ◽

Leanne Morrison ◽

...

Keyword(s):

Quality Of Life ◽

Mixed Methods ◽

Outcome Measures ◽

Validation Study ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Quality Of Life Scale ◽

Patient Reported ◽

Study Participants

ObjectivesTo examine the acceptability and validity of two patient-reported outcome measures (PROMs) for adult acne, comparing them to the validated Acne-specific Quality of Life (Acne-QoL) measure.DesignMixed-methods validation study.SettingParticipants were recruited by (1) mail-out through primary care if they had ever consulted for acne and received a prescription for acne treatment within the last 6 months, (2) opportunistically in secondary care and (3) poster advertisement in community venues.Participants221 (204 quantitative and 17 qualitative) participants with acne, aged 18–50 years.Outcome measuresQuantitative sub-study participants completed Acne-QoL, Skindex-16 and Comprehensive Acne Quality of Life Scale (CompAQ) at baseline, 24 hours and 6 weeks. Qualitative sub-study participants took part in cognitive think-aloud interviews, while completing the same measures. Transcribed audio recordings were analysed using inductive thematic analysis.ResultsQuantitative analyses suggested high internal consistency (Cronbach’s alpha 0.74–0.96) and reliability (intraclass correlation coefficient values 0.88–0.97) for both questionnaires. Both scales showed floor effects on some subdomains. Skindex-16 and CompAQ showed good evidence of construct validity when compared with Acne-QoL with Spearman’s correlation coefficients 0.54–0.81, and good repeatability over 24 hours.Qualitative data uncovered wide-ranging views regarding usability and acceptability. Interviewees held strong but differing views about layout, question/response wording, redundant/similar questions and guidance notes. Similarly, interviewees differed in perceptions of acceptability of the different scales, particularly on relatability of questions and emotive reactions to scales.ConclusionsAll PROMs performed well in statistical analyses. No PROM showed superior usability and acceptability in the qualitative study. Any PROM should be acceptable for further research in adult acne but researchers should consider the different domains and whether they will measure only facial or facial and trunk acne before making a selection. A new PROM or further evaluation of novel PROMs may be beneficial.

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