Views of the UK General Public on Important Aspects of Health Not Captured by EQ-5D

Shah, Koonal; Mulhern, Brendan; Longworth, Louise; Janssen, Mathieu F.

doi:10.1007/s40271-017-0240-1

Cited by 28 publications

(24 citation statements)

References 36 publications

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“…Namely, absence of shame, discrimination, fear and/or stigma; feeling safe; psychological well-being; and social relationships and participation especially overlap with the mental and social well-being aspects of the 1946 WHO definition of health 12. The importance of mental health outcomes has also been recently found in a study among a UK general population on what aspects of the EuroQol 5-dimensions are currently missing or receive too little attention, that is, mental health 20. This is also in line with a study by Ebrahimi and colleagues21 among frail elderly where being able to ‘master’ daily life (eg, coping and acceptance) and being happy and satisfied with life (eg, enjoyment of life) were described as characteristics of health 21…”

Section: Discussionmentioning

confidence: 82%

Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries

et al. 2018

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ObjectivesThe prevalence of multimorbidity is increasing in many Western countries. Persons with multimorbidity often experience a lack of alignment in the care that multiple health and social care organisations provide. As a response, integrated care programmes are appearing. It is a challenge to evaluate these and to choose appropriate outcome measures. Focus groups were held with persons with multimorbidity in eight European countries to better understand what good health and a good care process mean to them and to identify what they find most important in each.MethodsIn 2016, eight focus groups were organised with persons with multimorbidity in: Austria, Croatia, Germany, Hungary, the Netherlands, Norway, Spain and the UK (total n=58). Each focus group followed the same two-part procedure: (1) defining (A) good health and well-being and (B) a good care process, and (2) group discussion on prioritising the most important concepts derived from part one and from a list extracted from the literature. Inductive and deductive analyses were done.ResultsOverall, the participants in all focus groups concentrated more on the care process than on health. Persons with multimorbidity defined good health as being able to conduct and plan normal daily activities, having meaningful social relationships and accepting the current situation. Absence of shame, fear and/or stigma, being able to enjoy life and overall psychological well-being were also important facets of good health. Being approached holistically by care professionals was said to be vital to a good care process. Continuity of care and trusting professionals were also described as important. Across countries, little variation in health definitions were found, but variation in defining a good care process was seen.ConclusionA variety of health outcomes that entail well-being, social and psychological facets and especially experience with care outcomes should be included when evaluating integrated care programmes for persons with multimorbidity.

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Section: Discussionmentioning

confidence: 82%

Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries

et al. 2018

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“…Nevertheless, it may fail to capture some of the broader impact of pemphigus on HRQoL and subjective well-being [11]. For example, in a recent survey among members of the general population in the UK, respondents identified several important aspects of health that are not covered by the five dimensions of the EQ-5D, such as mental and emotional health and happiness [40]. Non-health outcomes including ability to work, financial security and social support in one's life might be important determinants of life satisfaction.…”

Section: Discussionmentioning

confidence: 99%

Subjective well-being in patients with pemphigus: a path analysis

et al. 2019

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Background Pemphigus is a chronic autoimmune blistering disease of the skin and mucosa severely impairing patients' health-related quality of life (HRQoL). To date, no studies have measured subjective well-being in terms of life satisfaction in pemphigus. Our main objective was to evaluate satisfaction with life in patients with pemphigus, and to analyse its relationship with clinical severity and HRQoL. Methods A cross-sectional survey was carried out enrolling 77 patients with pemphigus. Subjective well-being was measured using the Satisfaction with Life Scale (SWLS). HRQoL was assessed by the Dermatology Life Quality Index (DLQI) and EQ-5D-5L. Disease severity was measured by Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Results Mean ABSIS, DLQI, EQ-5D-5L and SWLS scores of patients were 11.7 (SD 17.3), 5.4 (6.8), 0.84 (0.22) and 4.76 (SD 1.52), respectively. The proportion of patients indicating extreme dissatisfaction, dissatisfaction, slightly below average in life satisfaction, average satisfaction, high satisfaction and very high satisfaction with life was 6 (7.8%), 5 (6.5%), 14 (18.2%), 16 (20.8%), 21 (27.3%) and 15 (19.5%), respectively. Life satisfaction was independent from age, gender, level of education and type of disease. A path analysis revealed that there was no direct relationship between ABSIS and SWLS (beta = − 0.09; p = 0.428); however, the following indirect path was confirmed: ABSIS → DLQI → EQ-5D-5L → SWLS. Conclusions Disease severity and HRQoL measures regularly used to assess patients' health status may be complemented with a measure of subjective well-being, such as SWLS, to achieve a more holistic assessment of patients' lives and optimise pemphigus care.

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“…In this target population, the use of the EQ-5D-5L is very straightforward, its application is favorable in a clinical setting. Nevertheless, there are some concerns, that a generic HRQL questionnaire might not capture every disease-specific detail, especially in patients severely diseased [11,12]. Therefore, the combination of disease-specific and generic measures could be beneficial [13] in order to enhance the informative value of HRQL measures for decisions on pro-active patient management.…”

Section: Introductionmentioning

confidence: 99%

Measuring quality of life in COPD patients: comparing disease-specific supplements to the EQ-5D-5L

Szentes

Schwarzkopf

Kirsch

et al. 2019

Expert Review of Pharmacoeconomics & Outcomes Research

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Objectives Patients with chronic obstructive pulmonary disease (COPD) show impairments in health-related quality of life (HRQL). We aimed to find a disease-specific questionnaire for routine application in large cohorts and to assess its additional explanatory power to generic HRQL (EQ-5D-5L). Methods 1,350 participants of the disease management program COPD received the EQ-5D-5L combined with one of the three disease-specific tools: COPD Assessment Test (CAT), Clinical COPD Questionnaire (CCQ) or St. George's Respiratory Disease Questionnaire (SGRQ) (450 participants each). We compared metric properties and evaluated the Germany-specific experience based values (EBVS) and utilities in comparison to the Visual Analogue Scale (VAS). We calculated the additional explanatory power of the identified disease-specific tool on VAS through regression analysis. Results 344 patients returned the questionnaire. CAT, CCQ and SGRQ-group did not differ regarding baseline characteristics. The questionnaire specific response rates were 33.7% for CAT, 30.5% for CCQ and 34.6% SGRQ, thereof 94.0%, 94.3% and 65.6% valid answers, respectively. EBVS was better suited to reflect VAS than utilities. CAT-increased the explanatory power by 10 percent. Conclusion CAT outperformed CCQ and SGRQ and it increased the explanatory power of VAS. EBV combined with CAT seem superior to only generic or disease-specific approaches.

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Views of the UK General Public on Important Aspects of Health Not Captured by EQ-5D

Cited by 28 publications

References 36 publications

Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries

Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries

Subjective well-being in patients with pemphigus: a path analysis

Measuring quality of life in COPD patients: comparing disease-specific supplements to the EQ-5D-5L

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