A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing

Thompson, David R.; Ski, Chantal F.; Garside, Joanne; Astin, Felicity

doi:10.1177/1474515116637980

Cited by 39 publications

(35 citation statements)

References 83 publications

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“…PROMs have been defined as "… any report of the status of a patient's health condition that comes directly from the patient (i.e., without the interpretation of the patient's responses by a physician or anyone else)" [12] (p1). Thus, PROMs can be seen as an umbrella term for selfrating instruments that measure constructs such as health, health-related states, health-related QoL, wellbeing, and symptoms among other things [13], and they have been shown to be an important aspect of healthcare quality and value-based healthcare [14][15][16][17].…”

Section: Introductionmentioning

confidence: 99%

A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales

Algurén

Coenen²,

Malm

et al. 2020

J Patient Rep Outcomes

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Background: Over the past decade, the importance of person-centered care has led to increased interest in patientreported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use or research is challenging because multimorbidity is often common in patients. The aim was therefore to provide an overview of heartdisease specific PROMs and to compare the content of those outcomes using a bio-psycho-social framework of health. Methods: A scoping review of heart disease-specific PROMs, including arrhythmia/atrial fibrillation, congenital heart disease, heart failure, ischemic heart disease, and valve diseases was conducted in PubMed (January 2018). All items contained in the disease-specific PROMs were mapped to WHO's International Classification of Functioning, Disability and Health (ICF) according to standardized linking rules. Results: A total of 34 PROMs (heart diseases in general n = 5; cardiac arrhythmia n = 6; heart failure n = 14; ischemic heart disease n = 9) and 147 ICF categories were identified. ICF categories covered Body functions (n = 61), Activities & Participation (n = 69), and Environmental factors (n = 17). Most items were about experienced problems of Body functions and less often about patients' daily activities, and most PROMs were specifically developed for heart failure and no PROM were identified for valve disease or congenital heart disease. Conclusions: Our results motivate and provide information to develop comprehensive PROMs that consider activity and participation by patients with various types of heart disease.

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Section: Introductionmentioning

confidence: 99%

A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales

Algurén

Coenen²,

Malm

et al. 2020

J Patient Rep Outcomes

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“…12 To improve outcomes, it is important to have a clear profile of the patient population and their need for specialized health care. 13,14 PROMs include any treatment or outcome evaluation obtained directly from patients through interviews, self-completed questionnaires, diaries, or other data collection tools such as hand-held devices and web-based forms. For these purposes, patient-reported outcome measures (PROMs) are an important aspect of outcomes of clinical trials.…”

Section: Introductionmentioning

confidence: 99%

“…13 PROMs are quantified measures of patients' perspectives regarding symptoms, functional limitations of diseases, and quality of life. 13,14 PROMs include any treatment or outcome evaluation obtained directly from patients through interviews, self-completed questionnaires, diaries, or other data collection tools such as hand-held devices and web-based forms. 15 In 2014, Iceland was recovering after the economic crisis, but there had been considerable cutbacks in the health care system.…”

Section: Introductionmentioning

confidence: 99%

Self‐reported health and quality of life outcomes of heart failure patients in the aftermath of a national economic crisis: a cross‐sectional study

2018

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AimsThere are indications that economic crises can affect public health. The aim of this study was to describe characteristics, health status, and socio‐economic status of outpatient heart failure (HF) patients several years after a national economic crisis and to assess whether socio‐economic factors were associated with patient‐reported outcome measures (PROMs).Methods and resultsIn this cross‐sectional survey, PROMs were measured with seven validated instruments, as follows: self‐care (the 12‐item European Heart Failure Self‐Care Behaviour scale), HF‐related knowledge (Dutch Heart Failure Knowledge Scale), symptoms (Edmonton Symptom Assessment System), sense of security (Sense of Security in Care—‘Patients' evaluation’), health status (EQ‐5D visual analogue scale), health‐related quality of life (HRQoL) (Kansas City Cardiomyopathy Questionnaire), and anxiety and depression (Hospital Anxiety and Depression Scale). Additional data were collected on access and use of health care, household income, demographics, and clinical status.The patients' (n = 124, mean age 73 ± 14.9, 69% male) self‐care was low for exercising (53%) and weight monitoring (50%) but optimal for taking medication (100%). HF‐specific knowledge was high (correct answers 12 out of 15), but only 38% knew what to do when symptoms worsened suddenly. Patients' sense of security was high (>70% had a mean score of 5 or 6, scale 1–6). The most common symptom was tiredness (82%); 12% reported symptoms of anxiety, and 18% had symptoms of depression. Patients rated their overall health (EQ‐5D) on average at 65.5 (scale 0–100), and 33% had poor or very bad HRQoL. The monthly income per household was <€3900 for 84% of the patients. A total of 22% had difficulties making appointments with a general practitioner (GP), and 5% had no GP. On average, patients paid for six health care‐related items, and >90% paid for medications, primary care, and visits to hospital and private clinics out of their own pocket. The cost of health care had changed for 71% of the patients since the 2008 economic crisis, and increased out‐of‐pocket costs were most often explained by a greater need for health care services and medication expenses. There was no significant difference in PROMs related to changes in out‐of‐pocket expenses after the crisis, income, or whether patients lived alone or with others.ConclusionsThis Icelandic patient population reported similar health‐related outcomes as have been previously reported in international studies. This study indicates that even after a financial crisis, most of the patients have managed to prioritize and protect their health even though a large proportion of patients have a low income, use many health care resources, and have insufficient access to care. It is imperative that access and affordable health care services are secured for this vulnerable patient population.

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“…Within the field, there are many different generic and disease-specific health and QoL assessment tools demonstrating varying degrees of validity, reliability and sensitivity (Thompson et al, 2016). None have been tested across the increasing diverse range of diagnostic groups now accessing CR.…”

Section: Introductionmentioning

confidence: 99%

“…Whilst generic PROMs allow comparisons between different medical conditions, they can be too broad to fully assess the impact of one particular illness, however disease-specific PROMs, although more sensitive, can miss broader aspects of a disease (Dempster and Donnelly, 2000). For comprehensive assessment, the current recommendation in CR is to use both a generic and a disease-specific tool, which is both time-consuming and burdensome for service users and clinicians (Thompson et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Developing an initial item bank for a new cardiac rehabilitation PROM

Cowie

Kerr

McKay

et al. 2018

British Journal of Cardiac Nursing

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Background: A Scotland-wide government scoping exercise identified the need for a new patient-reported outcome measure (PROM) suitable for the wide range of diagnostic groups now accessing cardiac rehabilitation (CR). Aim: This paper describes the initial steps underpinning development of the item bank for a first draft tool (PROM-CR1). Methods: A literature review of existing tools was undertaken to guide a qualitative data collection methodology involving 19 CR staff and 22 service users. Results: Four conceptual ideas for health/quality of life were identified from the literature review: 'general health', 'physical', 'social' and 'psychological'. Three key qualitative themes, largely reflective of literature review findings, were identified: 'expectations and entitlement', 'adjustment and acceptance' and 'control and choice'.

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A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing

Cited by 39 publications

References 83 publications

A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales

A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales

Self‐reported health and quality of life outcomes of heart failure patients in the aftermath of a national economic crisis: a cross‐sectional study

Developing an initial item bank for a new cardiac rehabilitation PROM

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