scholarly journals Patient-Reported Outcomes from Heart Failure Patients Participating in the Future Patient Telerehabilitation Program: Data From the Intervention Arm of a Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Cathrine Skov Schacksen ◽  
Anne-Kirstine Dyrvig ◽  
Nanna Celina Henneberg ◽  
Josefine Dam Gade ◽  
Helle Spindler ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Heart Failure Patients ◽  
Patient Reported ◽  
The Future ◽  
One Year ◽  
Future Patient

BACKGROUND More than 37 million people throughout the world are diagnosed with heart failure that is a growing burden on the health sector. Cardiac rehabilitation aims to improve patients’ recovery, functional capacity, psychosocial well-being, and health-related quality of life. However, cardiac rehabilitation programs have poor compliance and adherence. Telerehabilitation may be a solution to overcome some of these challenges to cardiac rehabilitation and making it more individualized. As part of the Future Patient Telerehabilitation program, a digital toolbox with the aim of enabling HF patients to monitor and evaluate their own current status has been developed and tested via data from a questionnaire (patient reported outcomes) that the patient has answered every other week (patient -reported outcomes) for one year. OBJECTIVE The aim of this sub-study is to evaluate the changes in quality of life and well-being for heart failure patients participating in the FPT Program over the course of one year. METHODS In total, 140 patients were enrolled in the Future Patient Telerehabilitation program and randomized into either the telerehabilitation group (n=70) or the control group (n=70). The patients in the telerehabilitation group answered patient reported outcomes that consisted of three components: Questions regarding the patients’ sleep patterns using the Spiegel Sleep Questionnaire. Measurements of physical limitations, symptoms, self-efficacy, social interaction and quality of life were assessed using the Kansas City Cardiomyopathy Questionnaire (KCCQ). In addition, five additional questions regarding psychological well-being were developed by the research group. Of the 70 patients in the TR group, 56 answered the PRO questionnaire and completed the program, and it is these 56 patients who constitute the population for this study. RESULTS The changes in scores during one year of the study were examined using one-sample Wilcoxon signed-rank tests with a hypothesized median being 0. There were statistically significant differences in the scores in most of the slopes and intersections of the scores from the dimensions from the KCCQ and in the slopes of the patients’ overall well-being (p < 0.05). Only one dimension, the symptom stability, showed a decrease in scores over a one-year period. CONCLUSIONS The overall well-being of heart failure patients increased during one year of participating in a telerehabilitation program. There was a statistically significant increase in clinical and social well-being and quality of life during the one-year intervention period. The increase in the scores over time may indicate that the patients became more aware of their own symptoms and became better equipped to cope with disease in their everyday lives. These results suggest that patient-reported-outcome questionnaires may be used as a tool for patients in a telerehabilitation program that can both monitor and guide the patients in mastering their own symptoms CLINICALTRIAL ClinicalTrials.gov NCT03388918; https://clinicaltrials.gov/ct2/show/NCT03388918

Health-Related Quality of Life Measurement in Public Health

2021 ◽  
Vol 43 (1) ◽  
Author(s):  
Robert M. Kaplan ◽  
Ron D. Hays
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Publication Date ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Patient-reported outcomes are recognized as essential for the evaluation of medical and public health interventions. Over the last 50 years, health-related quality of life (HRQoL) research has grown exponentially from 0 to more than 17,000 papers published annually. We provide an overview of generic HRQoL measures used widely in epidemiological studies, health services research, population studies, and randomized clinical trials [e.g., Medical Outcomes Study SF-36 and the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29]. In addition, we review methods used for economic analysis and calculation of the quality-adjusted life year (QALY). These include the EQ-5D, the Health Utilities Index (HUI), the self-administered Quality of Well-being Scale (QWB-SA), and the Health and Activities Limitation Index (HALex). Furthermore, we consider hybrid measures such as the SF-6D and the PROMIS-Preference (PROPr). The plethora of HRQoL measures has impeded cumulative science because incomparable measures have been used in different studies. Linking among different measures and consensus on standard HRQoL measurement should now be prioritized. In addition, enabling widespread access to common measures is necessary to accelerate future progress. Expected final online publication date for the Annual Review of Public Health, Volume 43 is April 2022. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

scholarly journals Patient-reported outcomes at discontinuation of anti-angiogenesis therapy in the randomized trial of chemotherapy with bevacizumab for advanced cervical cancer: an NRG Oncology Group study

2020 ◽  
Vol 30 (5) ◽  
pp. 596-601
Author(s):  
Dana Chase ◽  
Helen Q Huang ◽  
Bradley J Monk ◽  
Lois Michelle Ramondetta ◽  
Richard T Penson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Cancer ◽  
Patient Reported Outcomes ◽  
Performance Status ◽  
Well Being ◽  
Treatment Discontinuation ◽  
Life Assessment ◽  
Recurrent Cervical Cancer ◽  
Patient Reported

IntroductionTo describe patient-reported outcomes and toxicities at time of treatment discontinuation secondary to progression or toxicities in advanced/recurrent cervical cancer patients receiving chemotherapy with bevacizumab.MethodsSummarize toxicity, grade, and health-related quality of life within 1 month of treatment discontinuation for women receiving chemotherapy with bevacizumab in GOG240.ResultsOf the 227 patients who received chemotherapy with bevacizumab, 148 discontinued study protocol treatment (90 for disease progression and 58 for toxicity). The median survival time from treatment discontinuation to death was 7.9 months (95% CI 5.0 to 9.0) for those who progressed versus 12.1 months (95% CI 8.9 to 23.2) for those who discontinued therapy due to toxicities. The most common grade 3 or higher toxicities included hematologic, gastrointestinal, and pain. Some 57% (84/148) of patients completed quality of life assessment within 1 month of treatment discontinuation. Those patients who discontinued treatment due to progression had a mean decline in the FACT-Cx TOI of 3.2 points versus 2.2 in patients who discontinued therapy due to toxicity. This was a 9.9 point greater decline in the FACT-Cx TOI scores than those who discontinued treatment due to progression (95% CI 2.8 to 17.0, p=0.007). The decline in quality of life was due to worsening physical and functional well-being. Those who discontinued treatment due to toxicities had worse neurotoxicity and pain.DiscussionPatients who discontinued chemotherapy with bevacizumab for toxicity experienced longer post-protocol survival but significantly greater declination in quality of life than those with progression. Future trial design should include supportive care interventions that optimize physiologic function and performance status for salvage therapies.

scholarly journals Comparison of patient reported outcomes after Triathlon® and Kinemax Plus prostheses

2014 ◽  
Vol 96 (1) ◽  
pp. 61-66 ◽  
Author(s):  
S Dixon ◽  
AW Blom ◽  
MR Whitehouse ◽  
V Wylde
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Postal Questionnaire ◽  
Satisfaction Scale ◽  
Quality Of Life Scale ◽  
Patient Reported ◽  
Related Quality ◽  
One Year ◽  
And Function

INTRODUCTION The Triathlon® (Stryker, Kalamazoo, MI, US) total knee replacement was designed to improve patient function and survivorship. The aim of this study was to determine whether the Triathlon® prosthesis produces better patient reported outcomes than a previous design by the same manufacturer, the Kinemax Plus. METHODS The outcome of 233 knees of patients with a mean age of 68 years (range: 40–80 years) who received the Kinemax Plus prosthesis were compared with the outcomes of 220 knees of patients with a mean age of 70 years (range: 42–90 years) who received the Triathlon® prosthesis. Data were collected via postal questionnaire prior to surgery as well as at 8–12 weeks and at 1 year following surgery. Validated questionnaires were used including the WOMAC® (Western Ontario and McMaster Universities) pain and function scales, the Knee injury and Osteoarthritis Outcome Score quality of life scale and the self-administered patient satisfaction scale. RESULTS This study found that patients who had the Triathlon® prosthesis had significantly better pain relief (p<0.0001), function (p=0.028), knee related quality of life (p<0.0001) and satisfaction (p=0.0003) at three months after surgery than those who received the Kinemax Plus prosthesis. In addition, knee related quality of life (p=0.002) and satisfaction (p=0.021) were significantly higher at one year after surgery in Triathlon® patients. CONCLUSIONS The findings suggest that return to function and reduction in pain may occur more quickly in patients with a Triathlon® prosthesis than in those with the Kinemax Plus.

Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

2010 ◽  
Vol 20 (S3) ◽  
pp. 143-148 ◽  
Author(s):  
Philip Moons
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Main Question ◽  
Congenital Cardiac Disease ◽  
Patient Reported ◽  
Satisfaction With Treatment

AbstractPatient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

scholarly journals “Future Patient” Telerehabilitation for Patients With Heart Failure: Protocol for a Randomized Controlled Trial

10.2196/14517 ◽  
2019 ◽  
Vol 8 (9) ◽  
pp. e14517 ◽  
Author(s):  
Birthe Dinesen ◽  
Lars Dittmann ◽  
Josefine Dam Gade ◽  
Cecilia Klitgaard Jørgensen ◽  
Malene Hollingdal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Health Care Professionals ◽  
Illness Perception ◽  
Digital Technologies ◽  
Randomized Controlled ◽  
Patients With Heart Failure ◽  
The Future ◽  
Future Patient

Background Cardiovascular disease is the leading cause of mortality worldwide, accounting for 13%-15% of all deaths. Cardiac rehabilitation has poor compliance and adherence. Telerehabilitation has been introduced to increase patients’ participation, access, and adherence with the help of digital technologies. The target group is patients with heart failure. A telerehabilitation program called “Future Patient” has been developed and consists of three phases: (1) titration of medicine (0-3 months), (2) implementation of the telerehabilitation protocols (3 months), and (3) follow-up with rehabilitation in everyday life (6 months). Patients in the Future Patient program measure their blood pressure, pulse, weight, number of steps taken, sleep, and respiration and answer questions online regarding their well-being. All data are transmitted and accessed in the HeartPortal by patients and health care professionals. Objective The aim of this paper is to describe the research design, outcome measures, and data collection techniques in the clinical test of the Future Patient Telerehabilitation Program for patients with heart failure. Methods A randomized controlled study will be performed. The intervention group will follow the Future Patient Telerehabilitation program, and the control group will follow the traditional cardiac rehabilitation program. The primary outcome is quality of life measured by the Kansas City Cardiomyopathy Questionnaire. Secondary outcomes are development of clinical data; illness perception; motivation; anxiety and depression; health and electronic health literacy; qualitative exploration of patients’, spouses’, and health care professionals’ experiences of participating in the telerehabilitation program; and a health economy evaluation of the program. Outcomes were assessed using questionnaires and through the data generated by digital technologies. Results Data collection began in December 2016 and will be completed in October 2019. The study results will be published in peer-reviewed journals and presented at international conferences. Results from the Future Patient Telerehabilitation program are expected to be published by the spring of 2020. Conclusions The expected outcomes are increased quality of life, increased motivation and illness perception, reduced anxiety and depressions, improved electronic health literacy, and health economics benefits. We expect the study to have a clinical impact for future telerehabilitation of patients with heart failure. Trial Registration ClinicalTrials.gov NCT03388918; https://clinicaltrials.gov/ct2/show/NCT03388918 International Registered Report Identifier (IRRID) DERR1-10.2196/14517

scholarly journals Exploring the personal burden of shoulder pain among younger people in Australia: protocol for a multicentre cohort study

BMJ Open ◽  
2018 ◽  
Vol 8 (7) ◽  
pp. e021859
Author(s):  
Ilana N Ackerman ◽  
Richard S Page ◽  
Kathy Fotis ◽  
Peter Schoch ◽  
Nigel Broughton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Psychological Distress ◽  
Shoulder Pain ◽  
Patient Reported Outcomes ◽  
Healthcare Expenditure ◽  
Well Being ◽  
Musculoskeletal Conditions ◽  
Patient Reported

IntroductionPersistent musculoskeletal conditions can impact profoundly on younger people’s quality of life, psychological distress and capacity to work, as shown by previous research involving younger people with osteoarthritis. The personal impacts, in particular, work and parenting impacts, of other musculoskeletal conditions (such as persistent shoulder pain) on younger patient groups remain poorly understood. Furthermore, the personal financial burden associated with managing musculoskeletal conditions is rarely documented. This study aims to investigate well-being, work participation and productivity, shoulder-related parenting disability and out-of-pocket healthcare expenditure among younger people with shoulder pain and evaluate changes over 12 months.Methods and analysisOne hundred and fifty people aged 20–55 years with shoulder pain of more than 6 weeks’ duration (excluding those with recent history of fracture or dislocation) will be recruited for this cohort study. Participants will be recruited from three major public hospitals in Victoria, Australia, following screening of orthopaedic outpatient clinics lists and referrals. Participants will be asked to complete a baseline questionnaire and 2-week healthcare costs diary, with follow-up data collected at 12 months. Patient-reported outcomes will be collected, including health-related quality of life (HRQoL), shoulder pain and function, psychological distress, shoulder-related parenting disability and work productivity. Information on sociodemographics, employment, health services utilisation and shoulder-related healthcare expenditure will also be collected. Descriptive analysis of baseline data will provide a comprehensive snapshot of the personal burden of shoulder pain. Baseline HRQoL and psychological distress data will be compared with Australian population norms to provide context around well-being. Associations between sociodemographic factors and patient-reported outcomes will be evaluated using univariate and multivariate analyses. Changes in patient-reported outcomes from baseline to 12 months will be analysed using paired t-tests.Ethics and disseminationEthics approval has been obtained. The study findings will be submitted to peer-reviewed journals and presented at relevant scientific meetings.

Patient-reported outcomes are independent predictors of one-year mortality and cardiac events across cardiac diagnoses: Findings from the national DenHeart survey

2018 ◽  
Vol 26 (6) ◽  
pp. 624-637 ◽  
Author(s):  
Selina K Berg ◽  
Charlotte B Thorup ◽  
Britt Borregaard ◽  
Anne V Christensen ◽  
Lars Thrysoee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hospital Discharge ◽  
Patient Reported Outcomes ◽  
Severe Symptom ◽  
Poor Quality ◽  
Anxiety And Depression ◽  
Cardiac Events ◽  
Patient Reported ◽  
One Year

Aims Patient-reported quality of life and anxiety/depression scores provide important prognostic information independently of traditional clinical data. The aims of this study were to describe: (a) mortality and cardiac events one year after hospital discharge across cardiac diagnoses; (b) patient-reported outcomes at hospital discharge as a predictor of mortality and cardiac events. Design A cross-sectional survey with register follow-up. Methods Participants: All patients discharged from April 2013 to April 2014 from five national heart centres in Denmark. Main outcomes Patient-reported outcomes: anxiety and depression (Hospital Anxiety and Depression Scale); perceived health (Short Form-12); quality of life (HeartQoL and EQ-5D); symptom burden (Edmonton Symptom Assessment Scale). Register data: mortality and cardiac events within one year following discharge. Results There were 471 deaths among the 16,689 respondents in the first year after discharge. Across diagnostic groups, patients reporting symptoms of anxiety had a two-fold greater mortality risk when adjusted for age, sex, marital status, educational level, comorbidity, smoking, body mass index and alcohol intake (hazard ratio (HR) 1.92, 95% confidence interval (CI) 1.52–2.42). Similar increased mortality risks were found for patients reporting symptoms of depression (HR 2.29, 95% CI 1.81–2.90), poor quality of life (HR 0.46, 95% CI 0.39–0.54) and severe symptom distress (HR 2.47, 95% CI 1.92–3.19). Cardiac events were predicted by poor quality of life (HR 0.71, 95% CI 0.65–0.77) and severe symptom distress (HR 1.58, 95% CI 1.35–1.85). Conclusions Patient-reported mental and physical health outcomes are independent predictors of one-year mortality and cardiac events across cardiac diagnoses.

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