Practice patterns in chronic graft-versus-host disease patient management and patient reported outcome measures across the EBMT allogeneic transplantation network.
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ABSTRACT:
SUBMITTER: Perovic V
PROVIDER: S-EPMC9439950 | biostudies-literature | 2022 Sep
REPOSITORIES: biostudies-literature
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Practice patterns in chronic graft-versus-host disease patient management and patient reported outcome measures across the EBMT allogeneic transplantation network.
Perovic Vladimir V Sabol Ivan I Grce Magdalena M Inngjerdingen Marit M Pulanic Drazen D Peric Zinaida Z Peczynski Christophe C Polge Emmanuelle E Koenecke Christian C Dickinson Anne A Greinix Hildegard H Basak Grzegorz G Penack Olaf O Scherwath Angela A Barata Anna A Olivieri Attilio A Lawitschka Anita A Mensah-Glanowska Patrycja P Andrikovics Hajnalka H Schoemans Helene H Wolff Daniel D
Bone marrow transplantation 20220611 9
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Project description:Patient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients' perspectives on their condition. In endometriosis care, physicians' understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients' quality of life, as well as provide a tool for patients' self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes.
| S-EPMC8585017 | biostudies-literature
Project description:BackgroundPediatric CML is very rare. Before the introduction of tyrosine kinase inhibitors (TKIs), allogeneic hematopoietic stem cell transplantation (HSCT) from a donor -if available- was the standard cure attempt. Data on the long-term outcome and health-related quality of life (HRQOL) in former pediatric CML patients undergoing HSCT are lacking.Study questionWe investigated long-term survivors' self-reporting to a questionnaire sent out to patients formerly enrolled in pediatric CML-HSCT trials.MethodsIndividuals with CML transplanted at age <18 years were identified from the German Childhood Cancer Registry database. Long-term survivors received a questionnaire based on the SF-36 and FACT-BMT asking them to self-report HRQOL issues. (Ethical vote #541_20 B, Medical Faculty, University of Erlangen-Nürnberg).Results111/171 (64.9%) individuals survived HSCT long-term and 86/111 (77.5%) fulfilled all inclusion criteria and received the questionnaire. 37/86 (43%) participants (24 female, 13 male, median age at HSCT 12 years [range 2-18], median age at the time of the survey 29 years [range 18-43]) responded after a median follow-up period of 19 years (range 4-27) after HSCT. 10/37 (27%) participants underwent no regular medical follow-up examinations. Self-reported symptoms like chronic graft-versus-host disease (cGvHD)-associated organ impairments and conditioning regimen consequences could causatively not sharply be separated in each case. Complains comprised hypothyroidism (N=11, 30%), infertility (N=9, 24%), lung problems, dry eyes (each N=7, 19%), skin alterations (N=6, 17%), hair problems (N=4, 11%), and sexual dysfunction (N=3, 9%). 10 (27%) participants experienced 13 CML relapses after a median interval from HSCT of 31 months (range 2-93). Only one patient underwent 2nd SCT after failure of relapse treatment with TKIs. Six secondary malignancies (dysplastic melanocytic nevus and ALL, basal cell carcinoma (N=2), rhabdomyosarcoma, and thyroid carcinoma developed in 5 (13%) participants. As assessed by the SF-36 questionnaire, impaired physical health was mainly associated with cGvHD. The mental component summary score showed that also participants without cGvHD scored significantly lower than the general population. When assessed by the FACT-BMT, participants with cGvHD scored significantly lower while participants without cGvHD scored even 5 points higher than the data from controls. 18 (49%) participants considered the sequelae of HSCT an obstacle to education. Out of the total cohort, N=20 (54%), N=7 (19%), N=5 (14%), and N=4 (11%) participants worked full time, part-time, were unemployed, or had not yet finalized their education, respectively. 20 (54%) participants lived as singles, 8 (22%) lived in a partnership, 6 (16%) were married, and 3 (8%) had been divorced. Four (11%) participants reported a total number of 7 children.ConclusionThis first assessment of HRQOL in former pediatric patients with CML surviving HSCT for more than two decades demonstrates self-reported satisfactory well-being only in the absence of cGvHD. Research-based on self-reported outcomes sheds light on former patients' perspectives and provides an additional layer of valuable knowledge for pediatric and adult hematologists. Regular follow-up examinations are mandatory helping to avoid that late secondary neoplasias, CML-relapse, and disorders forming the broad range of possible long-term consequences of HSCT are not detected too late.
| S-EPMC9580018 | biostudies-literature
Project description:BackgroundPatient-reported outcome measures (PROMs) assess disability and progress toward functional goals while promoting patient-centered practice. They can be used by health professionals in any specialty and in a multitude of settings. This study reviews implementation strategies and lessons learned in a capacity-building program that took place with pediatric physiotherapists in Rwanda.MethodsUse of PROMs and patient-centered practice were integrated into 4 consecutive continuing professional development courses offered to 164 participants in Rwanda. We sought to identify a simple generic measure with proven validity in cross-cultural settings. The Patient-Specific Functional Scale was chosen due to its ease of use and ability to measure change in a wide range of patient conditions. Didactic classroom training and clinical site visits were 2 essential pedagogical elements of the capacity-building strategy. Site visits allowed for evaluation of skill levels and facilitation of knowledge transfer to patient care settings. Unique pairs of Rwandan colleagues were trained to serve as coteachers in each course to maximize sustainability of new techniques. This study presents data on a subset of 65 participants who completed a 48-hour pediatric rehabilitation course.ResultsAfter classroom instruction, 78% of participants were observed independently determining functional limitations with their patients. Additionally, pre- and post-tests indicated that therapists substantially increased their understanding of patient-centered practice after attending courses. Interviews conducted 26 months after the conclusion of the project revealed mixed success in sustainability of the use of PROMs, although perceived confidence remained high.ConclusionChallenges in long-term sustainability of new practices call attention to the need to target not only clinicians when introducing new methodologies, but also the Ministry of Health, hospital administration, and university faculty. Lessons learned from this study may be useful to other medical professionals planning capacity-building programs in low- and middle-income countries.
| S-EPMC7541114 | biostudies-literature
Project description:ObjectivesThe present study aimed to explore the impact of different periodontal surgical treatments on the quality of life and postoperative morbidity.Materials and methodsThe present study is a single-center, prospective, observational cohort trial. One hundred fifty-five patients, referred to the Periodontal Department of Bologna University who needed periodontal surgical treatment, were recruited. The self-reported perception of the postoperative course was assessed using the following anonymous questionnaires: Italian oral health impact profile (I-OHIP-14), visual analog scale (VAS) to evaluate the intensity of the pain, and 5-point Likert scale.ResultsPatients reported a mean OHIP-14 total score of 9.87±8.5 (range 0-42), significantly influenced by the female sex, flap extension, and periodontal dressing. A mean VAS score of 2.96±2.39 (range 0-9) was calculated, and was found to be influenced by the presence of vertical releasing incisions and palatal flap extension. Of the 155 subjects, 40 (25.8%) patients reported bleeding as a post-surgical complication, 96 (61.9%) swelling, 105 (67.7%) eating discomfort, and 44 (28.4%) reported speech discomfort.ConclusionsWithin the limitations of the nature of the present study, periodontal surgical procedures have a low impact on patients' quality of life evaluated through the OHIP-14 and VAS pain questionnaires.Clinical relevancePeriodontal surgical procedures are safe procedures, with a limited duration of postoperative discomfort as well as the incidence of complications.
| S-EPMC10713745 | biostudies-literature
Project description:IntroductionSurgical procedures incorporating a cosmetic element such as septorhinoplasty and otoplasty are currently under threat in the National Health Service (NHS) as they are deemed to be procedures of 'limited clinical benefit' by many primary care providers. Patient reported outcome measures (PROMs), which assess the quality of care delivered from the patients' perspective, are becoming increasingly important in documenting the effectiveness of such procedures.MethodsThe Rhinoplasty Outcomes Evaluation (ROE) questionnaire, a validated PROM tool, was used to assess patient satisfaction in 141 patients undergoing septorhinoplasty surgery over a 90-month period at the University Hospital Southampton NHS Foundation Trust.ResultsOverall, 100 patients with a mean follow-up period of 36 months completed the study. The mean ROE score was 73.3%. In addition, 75% of patients questioned were happy with the final result of their operation and 83% would undergo the procedure again if required. These benefits occurred irrespective of age, sex and primary versus revision surgery, and were maintained for up to 71 months following surgery.ConclusionsThis study has shown that patients are generally satisfied with their functional and cosmetic outcomes following septorhinoplasty surgery. These results help support the case for septorhinoplasty surgery to continue being funded as an NHS procedure.
| S-EPMC4473903 | biostudies-literature
Project description:PurposeWe designed a minimal-intensity conditioning regimen for allogeneic hematopoietic cell transplantation (HCT) in patients with advanced hematologic malignancies unable to tolerate high-intensity regimens because of age, serious comorbidities, or previous high-dose HCT. The regimen allows the purest assessment of graft-versus-tumor (GVT) effects apart from conditioning and graft-versus-host disease (GVHD) not augmented by regimen-related toxicities.Patients and methodsPatients received low-dose total-body irradiation ± fludarabine before HCT from HLA-matched related (n = 611) or unrelated (n = 481) donors, followed by mycophenolate mofetil and a calcineurin inhibitor to aid engraftment and control GVHD. Median patient age was 56 years (range, 7 to 75 years). Forty-five percent of patients had comorbidity scores of ≥ 3. Median follow-up time was 5 years (range, 0.6 to 12.7 years).ResultsDepending on disease risk, comorbidities, and GVHD, lasting remissions were seen in 45% to 75% of patients, and 5-year survival ranged from 25% to 60%. At 5 years, the nonrelapse mortality (NRM) rate was 24%, and the relapse mortality rate was 34.5%. Most NRM was a result of GVHD. The most significant factors associated with GVHD-associated NRM were serious comorbidities and grafts from unrelated donors. Most relapses occurred early while the immune system was compromised. GVT effects were comparable after unrelated and related grafts. Chronic GVHD, but not acute GVHD, further increased GVT effects. The potential benefit associated with chronic GVHD was outweighed by increased NRM.ConclusionAllogeneic HCT relying on GVT effects is feasible and results in cures of an appreciable number of malignancies. Improved results could come from methods that control progression of malignancy early after HCT and effectively prevent GVHD.
| S-EPMC3625710 | biostudies-literature
Project description:BackgroundUnderstanding which patient-reported outcome measures are being collected and utilized in clinical practice and research for patients with neck pain will help to inform recommendations for a core set of measures that provide value to patients and clinicians during diagnosis, clinical decision-making, goal setting and evaluation of responsiveness to treatment. Therefore, the aim of this study was to conduct a review of systematic reviews using a qualitative synthesis on the use of patient-reported outcome measures (PROMs) for patients presenting with neck pain to physical therapy.MethodsAn electronic search of systematic reviews and guideline publications was performed using MEDLINE (OVID), Embase (Elsevier), CINAHL Complete (EBSCOhost), and Web of Science (Clarivate) databases to identify reviews that evaluated physical therapy interventions or interventions commonly performed by a physical therapist for individuals with neck pain and included at least one patient-reported outcome measure. The frequency and variability in which the outcome measures were reported among the studies in the review and the constructs for which they measured were evaluated. The evaluation of a core set of outcome measures was assessed. Risk of bias and quality assessment was performed using A Measurement Tool to Assess systematic Reviews 2.ResultsOf the initial 7,003 articles, a total of 37 studies were included in the final review. Thirty-one PROMs were represented within the 37 reviews with eleven patient-reported outcome measures in three or more reviews. The eleven PROMs assessed the constructs of disability, pain intensity, psychosocial factors and quality of life. The greatest variability was found amongst individual measures assessing psychosocial factors. Assessment of psychosocial factors was the least represented construct in the included studies. Overall, the most frequently utilized patient reported outcome measures were the Neck Disability Index, Visual Analog Scale, and Numeric Pain Rating Scale. The most frequently used measures evaluating the constructs of disability, pain intensity, quality of life and psychosocial functioning included the Neck Disability Index, Visual Analog Scale, Short-Form-36 health survey and Fear Avoidance Belief Questionnaire respectively. Overall risk of bias and quality assessment confidence levels ranged from critically low (2 studies), low (12 studies), moderate (8 studies), and high (15 studies).ConclusionThis study identified a core set of patient-reported outcome measures that represented the constructs of disability, pain intensity and quality of life. This review recommends the collection and use of the Neck Disability Index and the Numeric Pain Rating Scale or Visual Analog Scale. Recommendation for a QoL measure needs to be considered in the context of available resources and administrative burden. Further research is needed to confidently recommend a QoL and psychosocial measure for patients presenting with neck pain. Other measures that were not included in this review but should be further evaluated for patients with neck pain are the Patient Reported Outcomes Measurement Information System (PROMIS) Physical function, PROMIS Pain Interference and the Optimal Screening for Prediction of Referral and Outcome Yellow Flag (OSPRO-YF) tool.
| S-EPMC10545655 | biostudies-literature
Project description:PurposePatient-report outcome measures (PROMs) have gained widespread support as a mechanism to improve healthcare quality. We aimed to map out key enablers and barriers influencing PROMs implementation strategies in routine clinical practice.MethodsAn umbrella review was conducted to identify reviews exploring enablers and barriers related to the integration of PROMs in routine clinical practice from January 2000 to June 2023. Information on key enablers and barriers was extracted and summarised thematically according to the Theoretical Domains Framework.Results34 reviews met our criteria for inclusion. Identified reviews highlighted barriers such as limited PROMs awareness among clinicians and patients, perceived low value by clinicians and patients, PROMs that were too complex or difficult for patients to complete, poor usability of PROMs systems, delayed feedback of PROMs data, clinician concerns related to use of PROMs as a performance management tool, patient concerns regarding privacy and security, and resource constraints. Enablers encompassed phased implementation, professional training, stakeholder engagement prior to implementation, clear strategies and goals, 'change champions' to support PROMs implementation, systems to respond to issues raised by PROMs, and integration into patient pathways. No consensus favoured paper or electronic PROMs, yet offering both options to mitigate digital literacy bias and integrating PROMs into electronic health records emerged as important facilitators.ConclusionsThe sustainable implementation of PROMs is a complex process that requires multicomponent organisational strategies covering training and guidance, necessary time and resources, roles and responsibilities, and consultation with patients and clinicians.
| S-EPMC11452453 | biostudies-literature
Project description:Many patients with hematological malignancies, such as acute myeloid leukemia, receive an allogeneic hematopoietic cell transplantation (HCT) to cure their underlying condition. Allogeneic HCT recipients are exposed to various elements during the pre-, peri- and post-transplant period that can disrupt intestinal microbiota, including chemo- and radiotherapy, antibiotics, and dietary changes. The dysbiotic post-HCT microbiome is characterized by low fecal microbial diversity, loss of anaerobic commensals, and intestinal domination, particularly by Enterococcus species, and is associated with poor transplant outcomes. Graft-versus-host disease (GvHD) is a frequent complication of allogeneic HCT caused by immunologic disparity between donor and host cells and results in tissue damage and inflammation. Microbiota injury is particularly pronounced in allogeneic HCT recipients who go on to develop GvHD. At present, manipulation of the microbiome for example, via dietary interventions, antibiotic stewardship, prebiotics, probiotics, or fecal microbiota transplantation, is widely being explored to prevent or treat gastrointestinal GvHD. This review discusses current insights into the role of the microbiome in GvHD pathogenesis and summarizes interventions to prevent and treat microbiota injury.
| S-EPMC9980553 | biostudies-literature
Project description:BackgroundThere is growing interest in the use of routine patient-reported outcome measures (PROMs) to influence the care of individual patients with stroke. However, there are significant gaps in our understanding as to how PROMs influence post-stroke patient care and clinical practice. This is due to factors including the number of purported uses for PROMs and that PROMs are complex interventions, which attempt to stimulate varied actions or behaviours. Therefore, the objective of this realist synthesis is to offer theory-based explanations as to how PROMs influence post-stroke clinical practice and patient care.MethodsThis is a protocol for a realist synthesis, which involves three distinct phases: theory building (phase 1), theory testing and refinement (phase 2) and synthesis (phase 3). Phase 1 will develop initial rough programme theories (IRPTs), through literature searches (from January 2000 onwards) of MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library and the grey literature. Only secondary sources will be included that contribute to the development of IRPTs. Only two IRPTs, prioritised by the stakeholder group, will be taken forward to be tested and refined during phase 2. Further novel searches will be employed in phase 2, utilising the same criteria as phase 1; however, phase 2 searches will not utilise grey literature searches, and only primary research studies that contribute to the refinement of programme theories under investigation will be included. Two independent reviewers will screen and select all returned results. The reviewers will code and annotate relevant sources, resulting in 'fragments' to be extracted and graded based on the richness of their contribution to explanation and causal insight. Further, these fragments will be organised into 'Context-Mechanism-Outcome' configurations. Phase 3 of the review will involve the synthesis of context-mechanism-outcome configurations to form middle-range theory-based explanations and developed logic models for stakeholders to understand how PROMs in post-stroke clinical practice and patient care work for whom, how and under what circumstances.DiscussionThe resulting realist synthesis will provide guidance on the implementation of PROMs within routine post-stroke clinical practice and patient care and act as a touchstone for further testing and refinement of PROMs programmes.Systematic review registrationPROSPERO CRD42020138649 .
| S-EPMC8082773 | biostudies-literature