Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study

Hammarlund, Catharina Sjödahl; Nilsson, Maria H; Hagell, Peter

doi:10.1007/s11136-011-9995-3

Cited by 36 publications

(19 citation statements)

References 33 publications

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“…Moreover, a previous study on the current sample showed that general self‐efficacy was significantly lower in the group with late‐stage PD than among those with a less severe disease . Walking difficulties are an early sign of PD that is of great significance for the individual and strongly associated with fear of falling in PD …”

Section: Discussionmentioning

confidence: 52%

Factors associated with life satisfaction in Parkinson's disease

et al. 2016

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Section: Discussionmentioning

confidence: 52%

Factors associated with life satisfaction in Parkinson's disease

et al. 2016

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“…Interestingly, symptoms that may be classed as sensitive or “socially embarrassing” (such as erectile dysfunction and skin symptoms) were only identified in the SMR. It has been noted previously that the anonymous nature of an online chatroom or forum, for example, provides individuals with the opportunity to report experiences that they may not feel comfortable discussing in an interview or focus group setting [ 18 ].…”

Section: Resultsmentioning

confidence: 99%

“…wording, response options and recall). A major criticism of using secondary social media data in this type of research is related to the uncertainty of the characteristics of the online respondents, in particular the lack of clinical confirmation of diagnosis [ 18 ]. Another study has demonstrated comparability in the findings derived from online blogs and face-to-face interviews, however [ 8 ].…”

Section: Discussionmentioning

confidence: 99%

A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

Humphrey

Willgoss²,

Trigg

et al. 2017

J Patient Rep Outcomes

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BackgroundThe Food and Drug Administration patient-reported outcome (PRO) guidance provides standards for PRO development, but these standards bring scientific and logistical challenges which can result in a lengthy and expensive instrument development process. Thus, more pragmatic methods are needed alongside traditional approaches.MethodsPartnering with the National Ankylosing Spondylitis (AS) Society, we compared three methods for eliciting patient experiences: 1) concept elicitation (CE) interviews with 12 individuals with AS, 2) “group concept mapping” (GCM) with 16 individuals with AS, 3) a social media review (SMR) of AS online chatrooms. Three conceptual models were developed and compared to explore data breadth/depth, as well as the practicalities and patient-centeredness.ResultsOverlap in concepts was observed between conceptual models; 35% of symptoms were identified by all methods. The SMR approach identified the most concepts (n = 23), followed by CE interviews (n = 18), and GCM (n = 15). Eight symptoms were uniquely identified using GCM and SMR. Eliciting in-depth data was challenging for SMR as detail was not always provided. Insight into the relationships between symptoms was obtained as a “concept map” in GCM, via effective probing within interviews, and through the subject’s descriptions in SMR. Practical investment varied; CE interviews were the most resource intensive, whereas SMR was the least. Individuals in GCM and CE interviews reported high engagement.ConclusionsPrimary CE interviews achieved the greatest depth in conceptual understanding of patient experience; however, novel methods (GCM, SMR) provide complementary approaches for identifying measurement concepts. Each method has strengths and weaknesses and should be selected based on specific research objectives.Electronic supplementary materialThe online version of this article (10.1186/s41687-017-0013-6) contains supplementary material, which is available to authorized users.

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“…Instead it captures the rich nature of the topic of investigation, where all voices are heard. Further, CM has been used to evaluate and develop nursing education,25 as well as to examine QI and equality in healthcare 26 27. Overall, CM methodology has proven to be reliable and valid 28…”

Section: Methodsmentioning

confidence: 99%

Fourteen years of quality improvement education in healthcare: a utilisation-focused evaluation using concept mapping

et al. 2019

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BackgroundThe need for training in quality improvement for healthcare staff is well acknowledged, but long-term outcomes of such training are hard to evaluate. Behaviour change, improved organisational performance and results are sought for, but these variables are complex, multifactorial and difficult to assess.AimThe purpose of this article is to explore the personal and organisational outcomes identified by participants over 14 years of university-led QI courses for healthcare professionals.MethodInspired by the Kirkpatrick model for evaluation, we used concept mapping, a structured mixed method that allows for richness of data to be captured and visualised by inviting stakeholders throughout the process. In total, 331 previous course participants were included in the study by responding to two prompts, and 19 stakeholders taking part in the analysis process by doing the sorting.ResultTwo maps, one for personal outcomes and one for organisational outcomes, show clusters of the responses from previous course participants and how the outcomes relate to each other in meta-clusters. Both maps show possible long-term outcomes described by the previous course participants.ConclusionThe results of this study indicate that it is possible that training in quality improvement with a strong experiential pedagogical approach fosters a long-term improvement capability for the course participants and, even more important, a long-term improvement capability (and increased improvement skill) in their respective organisations.

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Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study

Abstract: By the use of concept mapping, a multi-perspective conceptual map of prioritized aspects for the outcome measurement in PD was defined. These findings provide an initial conceptual basis toward improved outcome measurement priorities in clinical PD trials.

Cited by 36 publications

References 33 publications

Factors associated with life satisfaction in Parkinson's disease

Factors associated with life satisfaction in Parkinson's disease

A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

Fourteen years of quality improvement education in healthcare: a utilisation-focused evaluation using concept mapping

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