Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients

Santana, Maria-Jose; Feeny, David; Johnson, Jeffrey; McAlister, Finlay A.; Kim, Daniel; Weinkauf, J.; Lien, Dale

doi:10.1007/s11136-010-9599-3

Cited by 82 publications

(68 citation statements)

References 25 publications

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“…The training session for transplant specialists was designed for a randomized trial where chronic lung disease patients completed the Health Utilities Index (HUI) at every outpatient visit and the graphically presented results were shared with clinicians [23][24][25] . At every visit, discussions amongst patient, family and team members were audio-recorded to assess communication, the role of HUI and how the information contributed to care plans.…”

Section: Clinical Settingmentioning

confidence: 99%

“…The quick card was tailored to team needs and to the size of their white coats pockets. [23][24][25] Monitoring PROs use During the first month, clinicians completed the proxy version at every visit after seeing icians scored patients lower than the patients themselves, proving the importance of adding the patient perspective. Subsequently, at the monthly team rounds the use of PROs was reinforced by presenting clinical cases to encourage adoption and respond to queries.…”

Section: Content and Supporting Materialsmentioning

confidence: 99%

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Training clinicians in how to use patient-reported outcome measures in routine clinical practice

et al. 2015

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Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A effectively utilize PROs data in their clinical encounters.The implementation of PROs in patient care represents a significant change to clinical practice of individual clinicians and health organisations. Using a change-management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant and paediatrics), in three countries with different health care systems, thus providing a rare opportunity to pull out common approaches whilst recognizing specific settings. For each program we describe the clinical and organisational setting, the program planning and development, the content of the training session with supporting material, subsequent monitoring of PROs use and evidence of adoption. The common successful components and practical steps are identified, leading to discussion and future recommendations. The common successful components are identified, leading to discussion and future recommendations.

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Section: Clinical Settingmentioning

confidence: 99%

Section: Content and Supporting Materialsmentioning

confidence: 99%

Training clinicians in how to use patient-reported outcome measures in routine clinical practice

et al. 2015

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“…While some studies find no effects [2,29,3], others provide limited evidence of improved wellbeing [4,16,11]. It is arguable that understanding one's own QoL does not necessarily lead to change at the time it is received, and the majority of intentions to adopt new behaviours are not always followed by actual behaviour change [30].…”

Section: Discussionmentioning

confidence: 99%

Evaluating a new methodology for providing individualized feedback in healthcare on quality of life and its importance, using the WHOQOL-BREF in a community population

Llewellyn

Skevington

2015

Qual Life Res

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“…It is also plausible that not using diseasespecific measures may have made a difference to our ill sample, as these are generally found to be more responsive to change (Santana et al, 2010), but this would neither have been practicable, nor enabled us to test the generic principle of the impact of QoL feedback.…”

Section: Discussionmentioning

confidence: 99%

“…This represents an intervention in its own right, and evidence for its efficacy is contradictory. While some studies found no effects (Hilarius et al, 2008;Rosenbloom et al, 2007;Santana et al, 2010), others provide limited evidence of positive outcomes such as improved emotional wellbeing (Velikova et al, 2004), disease-specific QoL and mental QoL (Gutteling et al, 2008), behavior, psychosocial health and family activities (De Wit et al, 2008). Although indicating that QoL feedback is an important mechanism whereby wellbeing can be influenced, the exact process remains unclear, as feedback methods vary widely.…”

Section: Introductionmentioning

confidence: 99%

Using guided individualised feedback to review self-reported quality of life in health and its importance

Llewellyn

Skevington

2014

Psychology & Health

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This pilot study investigated the effects of providing guided, individualised feedback on subjective quality of life (QoL), using results from the multi-dimensional WHOQOL-BREF profile.Participants (n=129; 85 chronically ill) were recruited in the community, and primary care. They were randomized to receive written or verbal guidance on interpreting a new graphical summary profile, which simultaneously presented (a) their individual self-ratings of QoL, and (b) the importance attributed to each QoL dimension. Before and after feedback, participants completed health status, subjective QoL, QoL importance, goal-oriented QoL, and mood measures.Receiving individualised feedback was associated with increased psychological QoL, with modest effect size. No effects were found for physical, social or environmental QoL or QoL importance, health status, mood or goal-oriented QoL. There were no differences between modes of delivering guidance, indicating equal effectiveness. Chronic illness participants reported poorer QoL, moved more slowly towards their QoL goals, and had larger differences between core QoL and QoL Importance than healthy participants.Guided individualised empirical feedback about QoL judgements could be used to promote psychological wellbeing. Although professional interpretation of feedback is unnecessary, if shared, patients' profiled WHOQOL information could support selfmonitoring, self-management, and clinical decision-making.

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Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients

Abstract: We detected very small effects on patient-clinician communication and small effects on patient management, without detecting improvement in patient outcome.

Cited by 82 publications

References 25 publications

Training clinicians in how to use patient-reported outcome measures in routine clinical practice

Training clinicians in how to use patient-reported outcome measures in routine clinical practice

Evaluating a new methodology for providing individualized feedback in healthcare on quality of life and its importance, using the WHOQOL-BREF in a community population

Using guided individualised feedback to review self-reported quality of life in health and its importance

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