Patient reported outcome measures for measuring dignity in palliative and end of life care: a scoping review

The current scoping review aimed to map current literature investigating the relationship between pain extent extracted from pain drawings with clinical, psychological, and psycho-physiological patient-reported outcome measures in people with pain. Electronic databases were searched for cross-sectional cohort studies that collected pain drawings using digital technology or a pen-on-paper approach and assessed for correlations between pain extent and clinical, psychological or psycho-physical outcomes. Data were extracted by two different reviewers. The methodological quality of studies was assessed using the Newcastle–Ottawa Quality Assessment Scale. Mapping of the results included: 1, description of included studies; 2, summary of results; and 3, identification of gaps in the existing literature. Eleven cross-sectional cohort studies were included. The pain disorders considered were heterogeneous, ranging from musculoskeletal to neuropathic conditions, and from localized to generalized pain conditions. All studies included pain and/or pain-related disability as clinical outcomes. Psychological outcomes included depression and anxiety, kinesiophobia and catastrophism. Psycho-physical measures included pressure or thermal pain thresholds. Ten studies were considered of high methodological quality. There was heterogeneity in the associations between pain extent and patient-reported outcome measures depending on the pain condition. This scoping review found that pain extent is associated with patient-reported outcome measures more so in patients presenting with musculoskeletal pain, e.g., neck pain or osteoarthritis, rather than for those with neuropathic pain or headache.

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Patient-Reported Outcome Measures to Inform Care of People With Dementia—A Systematic Scoping Review

The Gerontologist ◽

10.1093/geront/gnz179 ◽

2020 ◽

Cited By ~ 1

Author(s):

Darshini R Ayton ◽

Madeleine L Gardam ◽

Elizabeth K Pritchard ◽

Rasa Ruseckaite ◽

Joanne Ryan ◽

...

Keyword(s):

Quality Of Life ◽

Outcome Measures ◽

Scoping Review ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

System Level ◽

Patient’S Perspective ◽

Patient Reported ◽

The Impact

Abstract Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

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Patient-reported outcome measures for patients with hand-specific impairments—A scoping review

Journal of Hand Therapy ◽

10.1016/j.jht.2020.08.003 ◽

2020 ◽

Author(s):

L. Woythal ◽

J.D. Comins ◽

S. Brorson

Keyword(s):

Outcome Measures ◽

Scoping Review ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Patient Reported

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Patient-reported outcome measures for retinoblastoma: a scoping review

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00232-7 ◽

2020 ◽

Vol 4 (1) ◽

Author(s):

Ana Janic ◽

Sylvie Bowden ◽

Sarah Levy ◽

Jennifer Stinson ◽

Helen Dimaras

Keyword(s):

Outcome Measures ◽

Scoping Review ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Patient Reported

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Patient-reported outcome measures in pediatric palliative care—a protocol for a scoping review

Systematic Reviews ◽

10.1186/s13643-021-01791-6 ◽

2021 ◽

Vol 10 (1) ◽

Author(s):

Heidi Holmen ◽

Anette Winger ◽

Simen A. Steindal ◽

Charlotte Castor ◽

Lisbeth Gravdal Kvarme ◽

...

Keyword(s):

Palliative Care ◽

Outcome Measures ◽

Scoping Review ◽

Rapid Development ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Self Report ◽

Pediatric Palliative Care ◽

Scoping Reviews ◽

Patient Reported

Abstract Background In pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. Methods We propose a scoping review following the framework by Arksey and O’Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. Discussion The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. Systematic review registration https://osf.io/yfch2/.

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Evaluating quality in acute care using patient reported outcome measures: a scoping review

Acute Medicine Journal ◽

10.52964/amja.0840 ◽

2021 ◽

Vol 20 (1) ◽

pp. 48-67

Author(s):

Elsemieke EM Mols ◽

◽

Marleen GAM van der Velde ◽

Prabath WB Nanayakkara ◽

Harm R Haak ◽

...

Keyword(s):

Psychometric Properties ◽

Acute Care ◽

Outcome Measures ◽

Scoping Review ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Limited Information ◽

Cosmin Checklist ◽

Pubmed Database ◽

Patient Reported

The aim of this scoping review is to identify patient reported outcome measures (PROMs) in acute care settings, assess their psychometric properties and provide recommendations for their use in daily practice. We performed a search in the PubMed database to identify publications concerning PROMs in an acute care setting. The COSMIN checklist was used to assess the psychometric properties of the reported PROMs. We found 1407 publications and included 14 articles, describing 15 measures. Most publications provided limited information on psychometric properties. Three generic PROMs were deemed of adequate quality for use in acute care. We recommend future development and evaluation of PROMs focussing on acute care to further evaluate and improve the quality of acute care.

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Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care

Supportive Care in Cancer ◽

10.1007/s00520-012-1436-5 ◽

2012 ◽

Vol 20 (7) ◽

pp. 1573-1578 ◽

Cited By ~ 20

Author(s):

Steffen T. Simon ◽

◽

Irene J. Higginson ◽

Richard Harding ◽

Barbara A. Daveson ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Outcome Measurement ◽

Patient Reported Outcome ◽

Life Care ◽

Research And Practice ◽

Patient Reported

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Electronic patient-reported outcome measures using mobile health technology in rheumatology: A scoping review

PLoS ONE ◽

10.1371/journal.pone.0253615 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0253615

Author(s):

Jaclyn Shelton ◽

Sierra Casey ◽

Nathan Puhl ◽

Jeanette Buckingham ◽

Elaine Yacyshyn

Keyword(s):

Rheumatic Disease ◽

Outcome Measures ◽

Mobile Health ◽

Scoping Review ◽

Inflammatory Arthritis ◽

Health Technology ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Mobile Health Technology ◽

Patient Reported

Objective This scoping review aims to characterize the current literature on electronic patient-reported outcome measures (ePROMs) in rheumatology and assess the feasibility and utility of ePROMs and mobile health technology in the management of rheumatic disease. Introduction Patient-reported outcome measures (PROMs) are commonly used in rheumatology as they are important markers of disease activity and overall function, encourage shared decision-making, and are associated with high rates of patient satisfaction. With the widespread use of mobile devices, there is increasing interest in the use of mobile health technology to collect electronic PROMs (ePROM). Inclusion criteria All primary studies that involve the collection of ePROMs using mobile devices by individuals with a rheumatic disease were included. Articles were excluded if ePROMs were measured during clinic appointments. Methods A scoping review was performed using Medline, Embase, PsycINFO, and CINAHL with index terms and key words related to “patient-reported outcome measures”, “rheumatic diseases”, and “mobile health technology”. Results A total of 462 records were identified after duplicates were removed. Of the 70 studies selected for review, 43% were conference proceedings and 57% were journal articles, with the majority published in 2016 or later. Inflammatory arthritis was the most common rheumatic disease studied. Generic ePROMs were used over three times more often than disease-specific ePROMs. A total of 39 (56%) studies directly evaluated the feasibility of ePROMs in clinical practice, 19 (27%) were clinical trials that used ePROMs as study endpoints, 9 (13%) were focus groups or surveys on smartphone application development, and 3 (4%) did not fit into one defined category. Conclusion The use of ePROMs in rheumatology is a growing area of research and shows significant utility in clinical practice, particularly in inflammatory arthritis. Further research is needed to better characterize the feasibility of ePROMs in rheumatology and their impact on patient outcomes.

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