scholarly journals Does the Patient-Reported Apnea Questionnaire (PRAQ) increase patient-centredness in the daily practice of sleep centres? a mixed-methods study

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e025963
Author(s):  
Inger L Abma ◽  
Maroeska M Rovers ◽  
Marijke IJff ◽  
Bernard Hol ◽  
Masha Nägele ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Mixed Methods ◽  
Clinical Care ◽  
Healthcare Providers ◽  
Obstructive Sleep ◽  
Number Of Patients ◽  
Patient Reported ◽  
Patient Centredness

ObjectivesThe objective of this exploratory study was to see how the Patient-Reported Apnea Questionnaire (PRAQ) may impact the daily clinical practice of sleep centres, and why it may or may not work as expected. The hypotheses were tested that this patient-reported outcome measure makes patients more aware of which of their health complaints may be related to obstructive sleep apnoea (OSA), and that it improves patient-centredness of care by shifting the focus of care away from (only) medical problems towards the individual burden of disease and quality of life.DesignMixed methods. The quantitative study (surveys, patient records) was a before-and-after study.SettingThree sleep centres in The Netherlands (secondary care).Participants27 patients and 14 healthcare professionals were interviewed. 487 patients completed surveys pre-implementation, and 377 patients completed surveys post-implementation of the PRAQ. For the health records, 125 patients were included in the pre-implementation group, and 124 other patients in the post-implementation group.InterventionsThe PRAQ was used in clinical practice for six successive months.Outcome measuresScores on individual survey items, number of patients receiving non-medical treatment, adjustment of treatment at first follow-up, compliance with treatment.ResultsPatients were generally positive about the usefulness of the PRAQ before and during the consultation, as they felt more informed. Healthcare providers did not consider the PRAQ very useful, and they reported minor impact on their consultations. The surveys and health record study did not show an impact of the PRAQ on clinical practice.ConclusionsImplementing the PRAQ may be beneficial to patients, but this study does not show much impact with regard to patient-centredness of care. New Dutch guidelines for OSA care may lead to a greater emphasis on quality of life and value of care for patients, making its integration in clinical care potentially more useful.

Real-world use of epic for clinical practice (EPIC-CP) to assess patient-reported prostate cancer quality of life in the clinical setting.

2015 ◽  
Vol 33 (7_suppl) ◽  
pp. 18-18 ◽  
Author(s):  
Peter Chang ◽  
Arie Carneiro ◽  
Ostap Dovirak ◽  
Kimberly Taylor ◽  
Catrina Crociani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Practice ◽  
Clinical Care ◽  
Post Treatment ◽  
Rank Test ◽  
Routine Clinical Care ◽  
Patient Reported ◽  
Domain Scores

18 Background: Prostate cancer practitioners tend to underestimate patients’ treatment-related side effects. We developed the Expanded Prostate Cancer Index Composite for Clinical Practice (EPIC-CP) to facilitate patient-reported health-related quality of life (HRQOL) assessment at the point-of-care (Chang P et al, J Urol Sep 2011). We sought to demonstrate the feasibility of EPIC-CP use in routine clinical care, and to compare longitudinal patient-reported and practitioner-reported prostate cancer outcomes. Methods: We reviewed practitioner- and patient-reported HRQOL outcomes in 482 patients who underwent radical prostatectomy at our institution from 2010 to 2014. All EPIC-CP questionnaires were administered and interpreted without research personnel. Practitioner-reported outcomes were assessed using chart review. We used the paired t-test and Wilcoxon signed-rank test to compare pre- and post-treatment EPIC-CP domain scores, and Fisher’s exact test to compare patient-reported and practitioner-reported outcomes. We considered p-values < 0.05 statistically significant. Results: 708 total EPIC-CP questionnaires were completed. Mean urinary incontinence domain scores increased (worsened) significantly from baseline (0.6±0.2) to 3 (3.1±2.3) and 6 months (2.2±2.1) post-treatment, but were not statistically changed from baseline at 12 months (1.6±1.7). Patient-reported incontinence pad-free rates using EPIC-CP at 3, 6, and 12 months were 47%, 76%, and 78%, respectively, which were consistent with practitioner-reported rates. Mean sexual domain scores were significantly worse at 12 months (5.9±3.3) compared to baseline (2.4±2.8). Practitioners significantly overestimated the rate of functional erections compared to patients’ EPIC-CP-reported rates at 3 months (18% vs 12%, p < 0.05) and 12 months (45% vs 23%, p < 0.05). Bowel and vitality/hormonal scores were unchanged, and urinary irritation/obstruction scores improved after surgery. Conclusions: EPIC-CP is feasible to use in the routine clinical care of prostate cancer patients, and can help practitioners more accurately assess patients’ post-treatment symptom severity.

scholarly journals POS1055 HIGH SATISFACTION WITH USTEKINUMAB TREATMENT IN PATIENTS WITH ACTIVE PSORIATIC ARTHRITIS – FINAL RESULTS OF THE NON-INTERVENTIONAL STUDY SUSTAIN DEMONSTRATE EARLY AND LONG-TERM TREATMENT RESPONSE AND HIGH TOLERABILITY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 806.1-806
Author(s):  
J. Wendler ◽  
E. Movshovich ◽  
N. Damann ◽  
F. Hamann ◽  
P. Wagener ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Clinical Care ◽  
Interventional Study ◽  
Routine Clinical Care ◽  
Number Of Patients ◽  
Patient Reported ◽  
Final Data

Background:From February 2015 to April 2020, patients with active psoriatic arthritis under treatment with ustekinumab in routine clinical care in Germany were included into the prospective, multi-center non-interventional study SUSTAIN.Objectives:Here, we present final data from SUSTAIN including final week 160 on long term efficacy and safety of ustekinumab treatment, quality of life and further patient reported outcomes.Methods:In SUSTAIN, 337 patients were treated with ustekinumab according to routine clinical care at 75 centers for 160 weeks with documentation intervals at week 0 and 4 and then every 12 weeks. The collected data included demographics, number of swollen and tender joints, tender entheses, amount of skin symptoms (BSA and PASI), patient reported outcome concerning disease activity and pain, Health Assessment Questionnaire (HAQ), quality of life (SF-12), sleep quality (VAS), satisfaction with therapy of patient and physician, safety (adverse events [AE]/serious adverse events [SAE]), pharmacoeconomic aspects, number of patients with „Minimal Disease Activity“ (MDA) and number of patients with MDA at week 28 und 52. For this analysis, final data of all 337 patients of all documented visits were analyzed.Results:The visit at week 4 was documented for 31 patients, at week 28 for 282, at week 52 for 216, and at week 160 for 129 of the 337 patients. At baseline, the patients had a mean age of 53.6 years (22-85) and 192 (57%) were female. The patients’ mean BMI was 29.6 kg/m2 (18.6-52). 54.3 % of the patients had at least one TNF inhibitor as prior medication. 54.1 % of the patients used MTX as concomitant medication. At time of inclusion, 73.3% of the patients showed arthritis at small and 52.2% at large joints. 16.9% showed spinal involvement and 13.1% enthesitis. In the course of the treatment, the number of tender joints improved from a mean of 10.0 (CI 95% 8.6/11.3) at baseline to 4.1 (3.2/4.9) at week 28, 3.6 (2.7/4.6) at week 52 and 1.0 (0.6/1.4) at week 160. Number of swollen joints improved from 4.1 (3.4/4.9) at baseline to 1.8 (1.2/2.3) at week 28, to 1.3 (0.8/1.8) at week 52 and to 0.4 (0.2/0.6) at week 160. BSA declined from a mean of 15.6% (rage from 0 to 80.0%) at baseline to 5.2% (0 to 60%) at week 28, to 3.0% (0 to 45.0%) at week 52 and to 1.7 (0 to 35%) at week 160. PASI declined from a mean of 7.3 (range from 0 to 43.0) at baseline to 1.7 (0 to 24.8) at week 28, to 1.3 (o to 28.5) at week 52 and to 0.5 (0 to 3.2) at week 160. Efficacy of the therapy with ustekinumab was assessed as “very good” or “good” by 85.3% of the treating physicians at week 52 and by 94.1% at week 160. The patients assessed the efficacy as “very good” or “good” by 82.8% at week 52 and by 89.8% at week 160. At the end of the study, 96 SAEs have been documented, of which only 16 were related to ustekinumab. All in all, safety of therapy with ustekinumab was assessed as “very good” or “good” by 99% of the treating physicians after 52 weeks and by 99.2 % after 160 weeks. The patients assessed the safety as “very good” or “good” by 97.5% at week 52 and by 100% at week 160.Conclusion:The non-interventional study SUSTAIN showed relevant disease improvements and good safety with an outstanding high therapy satisfaction in patients with active psoriatic arthritis treated with ustekinumab. Treatment effect was observed as early as after 4 weeks. The treatment effects and satisfaction sustained up end of documentation at week 160 in daily practice life.Disclosure of Interests:None declared.

scholarly journals Investigating Nutrition-Related Complications and Quality of Life in Patients With Gastroenteropancreatic Neuroendocrine Tumors: Protocol for a Mixed-Methods Prospective Study (Preprint)

2018 ◽  
Author(s):  
Erin Laing ◽  
Nicole Kiss ◽  
Michael Michael ◽  
Karla Gough ◽  
Meinir Krishnasamy
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Mixed Methods ◽  
Data Collection ◽  
Nutritional Status ◽  
Neuroendocrine Tumors ◽  
Screening Tools ◽  
Gastroenteropancreatic Neuroendocrine Tumors ◽  
Patient Reported

BACKGROUND Gastroenteropancreatic neuroendocrine tumors (GEP NETs) are a heterogeneous group of tumors with distinct effects on the body due to their potential to secrete hormones and peptides. The incidence and prevalence of GEP NETs in Australia are rising. During 2000-2006, the annual incidence was approximately 3.3 per 100,000 population. To date, there has been development of clinical practice and consensus guidelines for NETs covering best practice for diagnosis, treatment, and medical management; however, the supportive care needs and optimal nutritional management of patients affected by NETs remains underresearched, and evidence to guide clinical practice is lacking. While there is emerging research describing the extent of morbidity in different types of GEP NET patients, little is known about the experience of people affected by these tumors and how nutritional status is impacted by either diagnosis or treatment. OBJECTIVE The objective of this study was to explore nutrition-related complications and quality of life of patients diagnosed with a GEP NET and to generate evidence to inform future research and development of nutrition screening and management practices. METHODS Patients diagnosed with a GEP NET at two metropolitan recruitment sites will be invited to participate in a 6-month, mixed-methods longitudinal study. Participants recruited to the study will receive usual care and participate in data collection for the study at 4 time points (at recruitment and 2, 4, and 6 months postrecruitment). Study data will include nutritional status, body weight, fat-free mass, and patient-reported outcome measures (dietitian contact, disease-related symptom presence and severity, dietary habits, health-related quality of life, psychological morbidity, and financial impact). At recruitment and 6 months postrecruitment, complete nutrient testing, including relevant plasma vitamin levels, will also be undertaken. A purposive sample of participants will be invited to take part in semistructured interviews to explore the experience of living with a GEP NET and associated nutrition complications. RESULTS Ethics approval has been obtained, and study recruitment and data collection are underway. CONCLUSIONS This study will provide the first in-depth, comprehensive description of nutritional issues in patients with GEP NETs. Results will advance the knowledge of nutritional issues faced by patients with GEP NETs and help inform the development of screening tools and clinical practice guidelines. INTERNATIONAL REGISTERED REPOR DERR1-10.2196/11228

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

Assessment tools for palliative care.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 66-66
Author(s):  
Sarina Isenberg ◽  
Rebecca Aslakson ◽  
Sydney Morss Dy ◽  
Renee Wilson ◽  
Julie Waldfogel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Practice ◽  
Quality Indicators ◽  
Systematic Reviews ◽  
Grey Literature ◽  
Care Quality ◽  
Assessment Tools ◽  
Patient Reported

66 Background: Recent reviews have not comprehensively addressed palliative care (PC) assessment tools. This project summarizes the extent of evidence about PC assessment tools for patients and families, and how tools have been used for clinical care, quality indicators, and evaluation of interventions. Methods: We searched MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews for systematic reviews of assessment tools for PC, from January 2007 to March 2016. We searched the grey literature for domains without systematic reviews, and for domains with systematic reviews > three years old. Paired investigators independently screened search results and grey literature to determine eligibility, and assessed risk of bias of systematic reviews. The team selected the most recent and highest-quality systematic reviews for each domain. One investigator abstracted information, and a second investigator checked the information. Results: Using the National Consensus Project Palliative Care Guidelines domains, we included nine systematic reviews with 167 tools, and six tools from grey literature. Most tools were in physical, psychological, psychiatric, and social aspects of care, care at the end of life, and tools that cross domains (quality of life and caregiver-reported experience). Only two tools directly addressed spiritual aspects and none addressed cultural or patient-reported experience. Internal consistency reliability was evaluated for almost all tools; most reported construct validity; and few reported responsiveness (sensitivity to change). Few studies evaluated the use of assessment tools in quality indicators or clinical practice. A systematic review of 38 PC interventions and the assessment tools used found that at least 25 interventions included physical, psychosocial and psychiatric, and quality of life tools, but the tools varied extensively, and only nine included patient experience tools. Conclusions: Although assessment tools exist in many PC domains, tools are needed to assess spiritual and cultural aspects of care, and patient-reported experience. Research is needed concerning: tools in clinical practice and quality of care; comparison of existing tools; and evaluation and dissemination tools with evidence of responsiveness.

scholarly journals Patient-reported outcomes in clinical practice

Hematology ◽  
2015 ◽  
Vol 2015 (1) ◽  
pp. 501-506 ◽  
Author(s):  
Sarah Dobrozsi ◽  
Julie Panepinto
Keyword(s):  
Clinical Practice ◽  
Patient Outcomes ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Physician Communication ◽  
Valuable Data ◽  
Patient Reported ◽  
Improve Patient

Abstract Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient–physician communication, and the quality of care for hematology/oncology patients.

Sign in / Sign up

Export Citation Format

Share Document