Respondent‐generated quality of life measures: useful tools for nursing or more fool’s gold?

Macduff, Colin

doi:10.1046/j.1365-2648.2000.01486.x

Cited by 48 publications

(43 citation statements)

References 31 publications

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“…Although the SEIQoL-DW is known to have high face and content validity, 4,5,7,11,12 little evidence was available on other psychometric properties. 8 Using the new standards of psychometric testing, our data analyses provided additional validity evidence on test content, internal structure, and relations to other variables, as well as on the stability of the instrument. 10 Although the SEIQoL-DW cannot be considered as a measure of quality of life itself, it is a valid and reliable instrument to explore determinants for patients' quality of life.…”

Section: Variables and Measurementmentioning

confidence: 99%

“…In contrast to pre-defined questionnaires, which assess quality of life in a more functional manner, SEIQoL reflects a more holistic view, because it considers the effects of non-disease-related aspects of life. 8 The SEIQoL, therefore, provides critical information on a patient's perspective of quality of life issues. This is important for adequate patient management in integrated healthcare programmes.…”

Section: Introductionmentioning

confidence: 99%

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Individual quality of life in adults with congenital heart disease: a paradigm shift

Moons¹,

Deyk²,

Marquet³

et al. 2004

European Heart Journal

130

109

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Aims During the last decade, a paradigm shift has emerged in the measurement of quality of life, from the use of standard questionnaires towards a more individualized approach. Therefore, this study examined individual quality of life in adults with congenital heart disease and explored potential differences with those reported by matched, healthy control subjects. Methods and resultsWe examined 579 adults with congenital heart disease. A subsample of 514 of these patients was matched for age, gender, educational level, and employment status with 446 healthy counterparts. Individual quality of life was assessed using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Twelve domains affecting patients' quality of life were identified. Family, job/education, friends, health, and leisure time were the most prominent quality of life domains. Significantly fewer patients than control subjects considered financial means and material well-being and future to be important determinants of quality of life. Conclusion Assessment of quality of life in adults with congenital heart disease that focusses on the individual is appropriate for obtaining in-depth information on issues relevant for patients' quality of life. This represents a paradigm shift in the measurement of this concept.

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Section: Variables and Measurementmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Individual quality of life in adults with congenital heart disease: a paradigm shift

Moons¹,

Deyk²,

Marquet³

et al. 2004

European Heart Journal

130

109

View full text Add to dashboard Cite

show abstract

“…In other words, individualised measures can have value as a 'conversation opener' or vehicle for building the clinic-patient relationship, which is different from their use as a measure of the outcome of interventions. However, Macduff 307 noted that the areas nominated by patients may change over time, which presents challenges in using individualised PROMs as indicators of the outcome of interventions. For example, it is not clear whether patients should be asked to rate the domains they originally nominated or whether it is acceptable to rate new areas identified by patients as important.…”

Section: Candidate Programme Theories Of Proms Feedbackmentioning

confidence: 99%

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Greenhalgh

Dalkin

Gooding

et al. 2017

Health Serv Deliv Res

175

263

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BackgroundThe feedback of patient-reported outcome measures (PROMs) data is intended to support the care of individual patients and to act as a quality improvement (QI) strategy.ObjectivesTo (1) identify the ideas and assumptions underlying how individual and aggregated PROMs data are intended to improve patient care, and (2) review the evidence to examine the circumstances in which and processes through which PROMs feedback improves patient care.DesignTwo separate but related realist syntheses: (1) feedback of aggregate PROMs and performance data to improve patient care, and (2) feedback of individual PROMs data to improve patient care.InterventionsAggregate – feedback and public reporting of PROMs, patient experience data and performance data to hospital providers and primary care organisations. Individual – feedback of PROMs in oncology, palliative care and the care of people with mental health problems in primary and secondary care settings.Main outcome measuresAggregate – providers’ responses, attitudes and experiences of using PROMs and performance data to improve patient care. Individual – providers’ and patients’ experiences of using PROMs data to raise issues with clinicians, change clinicians’ communication practices, change patient management and improve patient well-being.Data sourcesSearches of electronic databases and forwards and backwards citation tracking.Review methodsRealist synthesis to identify, test and refine programme theories about when, how and why PROMs feedback leads to improvements in patient care.ResultsProviders were more likely to take steps to improve patient care in response to the feedback and public reporting of aggregate PROMs and performance data if they perceived that these data were credible, were aimed at improving patient care, and were timely and provided a clear indication of the source of the problem. However, implementing substantial and sustainable improvement to patient care required system-wide approaches. In the care of individual patients, PROMs function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices with patients. Patients valued both standardised and individualised PROMs as a tool to raise issues, but thought is required as to which patients may benefit and which may not. In settings such as palliative care and psychotherapy, clinicians viewed individualised PROMs as useful to build rapport and support the therapeutic process. PROMs feedback did not substantially shift clinicians’ communication practices or focus discussion on psychosocial issues; this required a shift in clinicians’ perceptions of their remit.Strengths and limitationsThere was a paucity of research examining the feedback of aggregate PROMs data to providers, and we drew on evidence from interventions with similar programme theories (other forms of performance data) to test our theories.ConclusionsPROMs data act as ‘tin openers’ rather than ‘dials’. Providers need more support and guidance on how to collect their own internal data, how to rule out alternative explanations for their outlier status and how to explore the possible causes of their outlier status. There is also tension between PROMs as a QI strategy versus their use in the care of individual patients; PROMs that clinicians find useful in assessing patients, such as individualised measures, are not useful as indicators of service quality.Future workFuture research should (1) explore how differently performing providers have responded to aggregate PROMs feedback, and how organisations have collected PROMs data both for individual patient care and to improve service quality; and (2) explore whether or not and how incorporating PROMs into patients’ electronic records allows multiple different clinicians to receive PROMs feedback, discuss it with patients and act on the data to improve patient care.Study registrationThis study is registered as PROSPERO CRD42013005938.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…This adjustment seems to be related to the increasing recognition of the social implication of disease (2) and to the increased life expectancy of patients suffering from chronic diseases (3). In patients with cancer, measuring quality of life may serve to rate the efficiency of therapeutic interventions (4,5).…”

Section: Introductionmentioning

confidence: 99%

Relationship between quality of life and clinical status in patients with gastrointestinal cancer

Pedraza

Alexander-Sierra

Oliveros

2012

Rev. esp. enferm. dig.

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Background: previous studies with patients having cancer have shown that quality of life scores depend on the clinical stage of the disease (the more advanced the disease, the worst quality of life).Methods: in a prospective study we studied 317 patients with gastric or colorectal cancer attending the Instituto Nacional de Cancerología between 2010 and 2011; the patients completed the EORTC QLQ-C30 before receiving treatment. This instrument measures quality of life in 15 domains. Scores of each domain were compared according to tumor stage. Differential Item Functioning was measured across neoplasm staging and tumor localization.Results: 145 patients (45.7%) were diagnosed with colorectal cancer. According to clinical staging, differences in quality of life scores were observed in 4 of 15 domains (physical and social functioning, anorexia). Most of the differences in quality of life domains depended on tumor localization (patients with colorectal cancer had the highest scores in quality of life) and sex (women reported better scores). These differences seemed to be independent of item properties. The construct was more adequately measured with items that explore the construct using a general approach.Conclusion: in this group of patients with colorectal and gastric cancer quality of life scores were more related with tumor localization than with clinical stage.

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Respondent‐generated quality of life measures: useful tools for nursing or more fool’s gold?

Cited by 48 publications

References 31 publications

Individual quality of life in adults with congenital heart disease: a paradigm shift

Individual quality of life in adults with congenital heart disease: a paradigm shift

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Relationship between quality of life and clinical status in patients with gastrointestinal cancer

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