Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

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Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽

10.1182/blood-2019-127248 ◽

2019 ◽

Vol 134 (Supplement_1) ◽

pp. 2180-2180

Author(s):

Robert J Klaassen ◽

Julia Y. Kinahan ◽

Johann M. I. Graham ◽

Yamilée V. Hébert ◽

Katie O'Hearn

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Outcome Measures ◽

Well Being ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Clinical Environment ◽

Patient Reported ◽

Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

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Excision and Primary Anastomosis for Bulbar Urethral Strictures Improves Functional Outcomes and Quality of Life: A Prospective Analysis from a Single Centre

BioMed Research International ◽

10.1155/2019/7826085 ◽

2019 ◽

Vol 2019 ◽

pp. 1-9 ◽

Cited By ~ 2

Author(s):

Pieter D’hulst ◽

Michael S. Floyd ◽

Fabio Castiglione ◽

Kathy Vander Eeckt ◽

Steven Joniau ◽

...

Keyword(s):

Quality Of Life ◽

Erectile Function ◽

Functional Outcomes ◽

International Prostate Symptom Score ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Urethral Stricture Disease ◽

Patient Reported

Background. Excision and primary anastomotic (EPA) urethroplasty remains the gold standard definitive treatment for short urethral stricture disease. For patients, postoperative erectile function and quality of life are the main goals of the surgery. Patient-reported outcome measures (PROMs) are therefore of major importance. Objective. The objective of this study was to prospectively analyse functional outcomes and patient satisfaction. Design, Settings, and Participants. We prospectively evaluated 47 patients before and after EPA from August 2009 until February 2017. The first follow-up visit occurred after a median of 2.2 months (n = 47/47), with the second and third follow-ups occurring at a median of 8.5 months (n = 38/47) and 20.2 months (n = 31/47). Before surgery and at each follow-up visit, the patients received five questionnaires: the International Prostate Symptom Score (IPSS), the International Prostate Symptom Score with the Quality of Life (IPSS-QOL) score, the Urogenital Distress Inventory Short Form (UDI-6) score, the International Index of Erectile Function-5 (IIEF-5) score, and the ICIQ-Lower Urinary Tract Symptoms Quality of Life (ICIQ-LUTS-QOL) score. Surgical Procedure. Surgery was performed in all cases using the same standardized EPA technique. Outcome Measurements and Statistical Analysis. Voiding symptoms, erectile dysfunction, and quality of life were analysed using paired sample t-tests, with a multiple-testing Bonferroni correction. Any requirement for instrumentation after surgery was considered treatment failure. Results and Limitations. Patients with mild or no baseline erectile dysfunction showed significant decline in erectile function at first follow-up (mean IIEF-5 of 23.27 [standard deviation; SD: 2.60] vs. 13.91 [SD: 7.50]; p=0.002), but this had recovered completely at the third follow-up (IIEF-5: 23.25 [SD: 1.91]; p=0.659). Clinically significant improvements were noted in IPSS, IPSS-QOL-score, UDI-6-score, and ICIQ-LUTS-QOL-score at the first follow-up (p<0.0001). These improvements remained significant at the second and third follow-ups (p<0.0001) for all PROMs. Three of the patients experienced stricture recurrence. The main limitations of this study were incomplete questionnaires, loss to follow-up, and low number of patients. Conclusions. EPA results in an initial decline in erectile function, but full recovery occurred at a median of 20 months. Voiding improved significantly, and a major improvement in quality of life was noted, which persisted for up to 20 months after surgery. Patient Summary. This study showed the importance of patient-reported outcome measures in indicating the actual outcome of urethral stricture disease surgery.

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P06.03 Child, parent, and clinician selection of patient-reported outcome measures to use in pediatric neuro-oncology outpatient follow-up clinics

Neuro-Oncology ◽

10.1093/neuonc/noab180.081 ◽

2021 ◽

Vol 23 (Supplement_2) ◽

pp. ii24-ii24

Author(s):

K S Bull ◽

S Stubley ◽

A Freeman ◽

C Liossi ◽

A E Darlington ◽

...

Keyword(s):

Quality Of Life ◽

Psychometric Properties ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Cross Sectional ◽

Patient Reported ◽

Perceived Relevance

Abstract BACKGROUND Survivors of childhood brain tumours are at risk of poor health-related quality of life (HRQoL). Appropriate and relevant measures can be used to monitor HRQoL so that timely interventions may be made for issues thus identified. We had previously selected patient-reported outcome measures (PROMs) with good psychometric properties that had emerged as well-suited for this use in two systematic reviews. The aim of the present study was to ascertain the views of families regarding the suitability of the selected measures for use in paediatric neuro-oncology follow-up clinics. These views were then used to inform the choice of PROMs for use on the KLIK PROM portal, a website designed to gather HRQoL information from families. MATERIAL AND METHODS As part of the PROMOTE study, we used a multi-centre, multi-informant, cross-sectional, qualitative methods research design. Using ‘think aloud’ audio-recorded interviews, children aged 8–17 years diagnosed within the previous five years with a brain tumour, off treatment and receiving outpatient care, and their parents, were shown a total of nine PROMs and asked to express their views on which they preferred. Detailed notes were made of all audio-recordings by two independent researchers. The final choice of PROMs to be included on the KLIK PROM portal was agreed through discussion of the PROMs selected by families with an expert panel of clinicians, researchers, and parent representatives. RESULTS 16 children and 17 parents participated and of these 2 children and 2 parents did not express a preference. The Pediatric Quality of Life Inventory (PedsQL) Core module was the most popular among the children and parents with 7/14 (50%) of children selecting it as either their 1st or 2nd choice citing that they liked the questions and felt them to be most relevant to them, and 8/15 (53%) of parents citing that it was easy, quick and simple, the wording was easy, and they liked the questions about emotional, social, and school functioning. The least popular questionnaires, with no participants selecting them as first choices, were the Kidscreen-10 and the Health Utilities Index. The latter 2 were selected only as 2nd or lower choices by 1 child and 3 parents respectively. CONCLUSION The PROMs that were finally selected for the KLIK PROM portal were the parent- and child-report PedsQL-Core measures of HRQoL due to their good psychometric properties, family and clinician preference and perceived relevance to follow-up care, and for clinical utility on the KLIK PROM portal.

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Patient-reported outcome measures suitable for quality of life/well-being assessment in multisectoral, multinational and multiperson mental health economic evaluations

Evidence-Based Mental Health ◽

10.1136/ebmental-2021-300334 ◽

2021 ◽

pp. ebmental-2021-300334

Author(s):

Agata Łaszewska ◽

Timea Mariann Helter ◽

Anna Nagel ◽

Nataša Perić ◽

Judit Simon

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Health Economic ◽

Well Being ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Economic Evaluations ◽

Meta Data ◽

Patient Reported

QuestionThe aim was to systematically collate and synthesise existing, publicly available patient-reported outcome measure (PROM) information suitable for quality of life (QOL)/well-being measurement in mental health economic evaluations, with specific focus on their applicability in multisectoral, multinational, multiperson economic evaluations and to develop an electronic PROM compendium with meta-data.Study selection and analysisA systematic literature search for non-disease-pecific PROMs and their versions suitable for the measurement of QOL/well-being or recovery was conducted from 2008 to February 2020. Six criteria were applied to judge their suitability in multisectoral, multinational, multiperson economic evaluations: (i) availability of separate adult and child/adolescent versions, (ii) availability of a proxy-completion option, (iii) assessing outcomes beyond health, (iv) availability of translations (≥2 language versions), (v) availability of a preference-based valuation, (vi) availability of value sets in more than one country.FindingsThe final ProgrammE in Costing, resource use measurement and outcome valuation for Use in multisectoral National and International health economic evaluAtions (PECUNIA) PROM-MH Compendium includes 204 unique scales, out of which 88 are individual instruments, while the remaining 116 scales belong to 46 PROM families with more than one distinctive version. Out of the total 134 individual PROMs/PROM families, 72% have at least two language versions, 8% measure broader well-being beyond health-related QOL, 11% have preference-based valuation, with multiple country sets available for 60% of these. None of the identified PROMs met all six proposed criteria.ConclusionsThe PECUNIA PROM-MH Compendium provides a unique overview of the relevant PROMs and their linked meta-data, and should be a helpful tool when choosing a suitable instrument for future mental health economic evaluations.

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Patient reported outcome on endourethrotomy combined with Amplatz dilatation for treatment of incompletely obliterated posterior urethral stricture following pelvic trauma: Validation in the era of urethroplasty

10.1101/2021.07.25.21261072 ◽

2021 ◽

Author(s):

Mohamed Wishahi ◽

Ahmed Mehena

Keyword(s):

Quality Of Life ◽

Sexual Function ◽

Urethral Stricture ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Pelvic Trauma ◽

Cross Sectional ◽

Patient Reported

Introduction: Direct vision internal urethrotomy (DVIU) is gaining revival among urologists, the procedure having the advantages of being minimally invasive as well as keeping continence and sexual function unaffected. The recurrence rate at 12 months was diminished by combination of DVIU with a Amplatz dilatation at the time of the procedure. Objectives are of present work is to present the outcome of the procedure. Materials and methods: This is an observational study with a cross-sectional approach. Patients underwent combined endo-urethrotomy and Amplatz dilation for posterior urethral strictures between February 2015 and January2020 were purposively recruited. We performed a retrospective review of the records of 48 patients who completed 12 months follow-up . Patient-reported outcome measures for urethral stricture surgery (USS-PROMs) and sexual function were assessed at 12 months follow-up questionnaire was used to assess quality of life. The patients in the study filled the questionnaire and returned to the researchers. Correlation between status before and after treatment were analyzed using simple statistical analysis to evaluate the effect of treatment on quality of life. Clinician-driven outcome were uroflowmetry, retrograde urethrogram, and reporting of complications. Results: Mean length of stricture segment was 2 cm (range 1-2.5 cm). At 12 months follow up patients reported very satisfactory. Restenosis that was treated with redo was reported in 2%. Mild stenosis that was treated with Amplatz dilatation was in 3%. Patients reported very satisfactory or satisfactory for USS-PROSMs, sexual function in comparison to pre-trauma status. Conclusions: Endourethrotomy combined with Amplatz dilation is an effective treatment for short segment passable posterior urethral stricture

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Factors related to perceived continuity of care in hospitalized cardiac patients

European Heart Journal ◽

10.1093/ehjci/ehaa946.3408 ◽

2020 ◽

Vol 41 (Supplement_2) ◽

Author(s):

E Safstrom ◽

T.J Jaarsma ◽

L.N Nordgren ◽

M.L Liljeroos ◽

A.S Stomberg

Keyword(s):

Quality Of Life ◽

Primary Care ◽

Health Care ◽

Continuity Of Care ◽

Perceived Control ◽

Care Utilization ◽

Funding Source ◽

Patient Reported

Abstract Background Since healthcare systems are increasingly complex and often fragmented, continuity of care after hospitalization is a priority to increase patient safety and satisfaction. Aim Describe factors related to continuity of care in patients hospitalized due to cardiac conditions. Methods This cross-sectional multicenter study enrolled patients 6 weeks after hospitalization due to cardiac conditions. A total of 993 patients were included (mean age 72.2 (SD 10.4), males 66%) with AMI (35%), AF (25%), angina (21%) and HF (17.3%). Patients completed the Patient Continuity of Care Questionnaire, a questionnaire based on the definition that continuity of care is “the extent to which a series of health care services is experienced as connected and coherent and is consistent with a patient's health needs and personal circumstances”. The total score of the questionnaire ranges from 6 to 30, higher score indicating higher continuity and a score <24 indicating insufficient continuity. Cronbach's alpha on the total PCCQ was 0.94. Correlations between PCCQ and quality of life, depression, anxiety, perceived control and health care utilization were estimated using spearman rang correlation. Results Insufficient continuity of care ranged between 47% to 59% in the different diagnosis groups, which the highest continuity in the AMI group and lowest in patients with atrial fibrillation. In patients hospitalized due to AMI (n=355, mean age 71 (± 11), 70% men), continuity of care was related to higher perceived control, higher quality of life, a good financial situation, being a man, no symptoms of anxiety or depression (ᚹ range 0.17–0.26 p≤0.002). A low score on the PCCQ were associated with follow-up visit to a nurse in primary care after hospitalization (ᚹ −0.12 p=0.033). In patients hospitalized due to angina (n=210, mean age 73 (± 9), 74% men), continuity of care was related to higher perceived control, higher quality of life and no depressive symptoms (ᚹ range between 0.20 and 0.26 p=0.005). In patients with AF, (n=255, mean age 71 (± 10.), 58% men), continuity of care was related to having had contact by telephone with a nurse-led AF clinic, higher perceived control, higher quality of life and not being depressed (ᚹ range between 0.14–0.25 p=0.03). In patients with HF, (n=173, mean age 77 (±8) 59% men), continuity was related to male ender, younger age, follow-up in a nurse-led HF clinic and not being anxious (ᚹ range between 0.16 and 0.22 p=0.004–0.047). Low total score on PCCQ correlated to having had telephone contact with nurse in primary care (ᚹ −0.24 p=0.002). Conclusion Almost half of all patient reported insufficient continuity of care. Perceived control, quality of life, and symptoms of depression were related to higher continuity of care in all diagnose groups except heart failure. Further, there was a correlation between continuity and follow-up visits or contact by telephone with nurse-led clinics in all diagnose groups except angina. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): Medical Research Council of Southeast Sweden, Centre for Clinical Research Sörmland

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