Use Of Patient-reported Outcome Measures Research Articles

Phenomenology: A Method for the Interpretation of Patient-Reported Outcomes.

Patient-reported outcome measures (PROMs) play a central role in clinical research and patient care resulting in a plethora of standardized PROMs to measure a range of constructs, including disease symptoms, health-related quality of life, and health status (Meadows/Reaney) used in a range of settings, including the nursing environment. However, the use of PROMs in drug development and their use in healthcare evaluation do not easily marry together. In drug development, standardization of measurement is key to the interpretation of the formation at a population level with minimal biases. However, in health care, the individual patient perspective, priority, and needs should be taken into account whereas, in the clinical encounter, one has to also deal with what is particular and unique. The purpose of this paper is to describe the characteristics of the phenomenological method as a means within a mixed-method framework, to supplement participants' patient-reported outcome numeric scores with a more in-depth commentary on the essence of the lived health experiences.

Acceptability, Perceptions, and Experiences Regarding Electronic Patient-Reported Outcomes After Laparoscopic Cholecystectomy: Protocol for a Mixed Methods Feasibility Study.

Patient-reported outcomes (PROs) can be defined as any report of a patient's health taken directly from the patient. Routine collection of PRO data has been shown to offer potential benefits to patient-doctor communication. Electronic forms of PRO measures (PROMs) could be more beneficial in comparison to traditional PROMs in obtaining PROs from patients. However, it is currently unclear whether the routine collection of electronic PRO data could result in better outcomes for patients undergoing laparoscopic cholecystectomy (LC). This study aims to explore the perspectives of patients and surgeons on the use of electronic PROMs. Based on prior research, technical skill and experience level of the surgeon, long-term quality of life, patient involvement in decision-making, communication skills of the surgeon, cleanliness of the ward environment, and standards of nursing care are identified to be the most important factors for the patients. This is a mixed methods prospective study that will collect both quantitative (survey) and qualitative (interview) data. The study has two components. The first involves the distribution of an electronic presurvey to patients who received elective LC within 48 hours of their surgery (n=80). This survey will explore the perspective of patients regarding the procedure, hospital experience, long-term outcomes, and the perceived value of using PROMs. These patients will then be followed up after 1 year and given another survey. The second component involves the distribution of the same survey and the completion of structured interviews with general surgeons (n=10). The survey will ascertain what PROs from the participants are most useful for the surgeons and the interviews will focus on how the surgeons view routine PRO collection. A convenience sampling approach will be used. Surveys will be distributed through Qualtrics and interviews will be completed on Microsoft Teams. Data collection began on February 14, 2023. As of February 12, 2024, 71 of 80 recruited patients have been given the presurvey. The follow-up with the patients and the general surgeon components of the study have not begun. The expected completion date of this study is in April 2025. Overall, this study will investigate the potential of electronic PRO collection to offer value for patients and general surgeons. This approach will ensure that patient care is investigated in a multifaceted way, offering patient-centric guidance to surgeons in their approach to care. DERR1-10.2196/57344.

Assessing the Use of Patient-Reported Outcome Measures in the Routine Clinical Care of Chronic Rhinosinusitis Patients: A Canadian Perspective.

Chronic rhinosinusitis (CRS) is a common inflammatory disease of the paranasal sinuses with significant quality of life impairments. There is a need to implement outcome-based metrics to evaluate the outcomes of CRS treatment with endoscopic sinus surgery or biologics. We aimed to understand Canadian otolaryngologists' opinions on patient-related outcome measures (PROM) for CRS and identify potential barriers to implementation. Qualitative research. A cross-sectional survey was distributed via the Canadian Society of Otolaryngology-Head and Neck Surgery and direct emailing. Participants' demographics, practice information, and opinions on PROM were collected. Of 346 (23%) Canadian otolaryngologists, 78 responded to the survey (26 rhinology fellowship-trained, 51 non-fellowship-trained, and 1 missing data). Thirty-eight responded that they collect PROM (69% with fellowship-trained, 39% non-fellowship-trained, P = .029). Regarding opinions on PROM, 74% of respondents agreed that it helps patients report their symptoms, 42% agreed that it improves the efficiency of the patient encounter, 54% agreed that it is easy for patients to understand, 62% agreed that it improves management and monitoring of clinical outcomes, and 71% disagreed that PROM is not helpful. Fellowship-trained otolaryngologists were 4 times more likely to agree that PROM improves management and monitoring of clinical outcomes (P = .014), and no other differences in opinions were significant. The most-frequently-identified barriers to PROM usage were lack of time for 67% of respondents, difficulty integrating into clinical workflow for 64%, and lack of integration into the electronic medical record for 47%. If these barriers were addressed, 86% of respondents said they would use PROM in their practice. Despite the low uptake of PROM among otolaryngologists without rhinology fellowship, opinions were generally favorable. We identified barriers that, if addressed, may increase their use in clinical practice. As resource-limited therapies such as biologics become more prevalent in CRS management, PROM may find more applications in shared clinical decision making.

Barriers to the Use of Patient-Reported Outcome Measures in Low- and Middle-income Countries.

Barriers to the Use of Patient-Reported Outcome Measures in Low- and Middle-income Countries.

Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes

BackgroundFor the past two decades, the assessment of the quality of diabetes care has mostly relied on clinical quality indicators. These have not included Patient-Reported Outcome Measures (PROMs) which provide information on outcomes deemed valuable by patients. We aimed to examine the potential utility of PROMs in type 2 diabetes care and to study the association of PROMs with patients' characteristics and clinical quality indicators.MethodsA cross-sectional survey of recently (≤ 4 years) diagnosed patients with type 2 diabetes (n = 392) in the setting of a large health plan. PROMs were based on two well-validated questionnaires, the Problem Areas in Diabetes (PAID) one-page questionnaire that measures diabetes-related distress, and the ten item PROMIS-10 global health questionnaire that measures general health. Additional items were added following a previous qualitative study among Israeli patients with diabetes. The survey was carried out using phone interviews, and data collected were linked to the electronic medical records. Multivariable regression models were used to assess the associations of socio-demographic variables and clinical quality indicators with the PROMs.ResultsAbout a fifth of participants (22%) had high diabetes-related distress (PAID score ≥ 40), a third reported that they did not feel confident in self-management of diabetes and about a third reported having sexual dysfunction. Women, younger patients, and those with a low education level (≤ 12 years) reported worse general health, were more likely to experience high diabetes-related distress, and to have low confidence in diabetes self-management. Interestingly, performance of all seven diabetes quality indicators was associated with worse general health and high diabetes-related distress. Of note, levels of glycated hemoglobin, LDL-cholesterol, or blood pressure were not associated with PROMs.ConclusionsPROMs provide important information on patient self-reported health status and are likely to reflect aspects of the quality of care that are not otherwise available to clinicians. Thus, the use of PROMs has the potential to expand the evaluation of diabetes care and promote patient-centered care. We recommend that policy-makers in the Ministry of Health and health maintenance organizations implement PROMs for assessing and improving the care for patients with type 2 diabetes.

Practical Use of Patient-Reported Outcome Measures in Chronic Kidney Disease-Associated Pruritus

Regulatory and clinical stakeholders are increasingly advocating for the use of patient-reported outcome (PRO) measures; however, the use of PROs is still not widespread. Patient reports are often the best ways to diagnose and monitor the effect of treatment on symptoms when the symptoms are subjective, as with pruritus. While many PRO tools are available to assess the severity of pruritus and its impact on quality of life (e.g., sleep), these are not used in a consistent manner and their results may not translate into clinical action. In this article, we present an introduction to PROs and their use in the assessment of chronic kidney disease-associated pruritus, as well as a practical guide to some of the PRO tools currently available, to empower all members of the nephrology patient care team to use these tools appropriately for the benefit of the patient.

Challenges in Selecting Patient-Reported Outcome Measures for Use in a Patient-Facing Technology.

Patient-reported outcome measures (PROMs) have been increasingly integrated into patient-facing technologies to engage and empower patients in cancer self-management at home. However, researchers and developers face several challenges in selecting the best-suited PROMs for patient-facing technologies, due to the complex nature of the disease, the multitude of PROMs with high psychometric quality, and the lack of clear standards for PROM utilization. In this paper, we have discussed these challenges, illustrated by breast cancer instruments.

Development and evaluation of a patient-reported outcome measure specific for Gaucher disease with or without neurological symptoms in Japan

BackgroundPatients with Gaucher disease (GD), a rare lysosomal storage disorder, have reduced health-related quality of life (HRQOL). A patient-reported outcome measure (PROM) for HRQOL developed for type 1 GD (GD1) is not appropriate for patients with neuronopathic GD (nGD) types 2 (GD2) and 3 (GD3). In this study, we developed a new PROM for use in all GD types. We previously reported the qualitative analysis of interviews with Japanese patients with nGD, which was used to create nGD-specific PROM items. Here we evaluated the full PROM combining the type 1 questionnaire with the new nGD-specific items.MethodsPatients with confirmed GD were recruited (Association of Gaucher Disease Patients in Japan or leading doctors) for pre-testing (May 2021) or the main survey (October–December 2021). The PROM had three parts: Parts 1 and 2 were translated into Japanese from the pre-existing GD1 PROM, whereas Part 3 was newly developed. Patients (or their caregivers, where necessary) completed the PROM questionnaire on paper and returned it by mail. Mean scores were determined overall and by GD type. Inter-item correlations, content consistency (Cronbach’s alpha), and test–retest reliability (Cohen’s kappa; main survey only, taken 2 weeks apart) were calculated.ResultsSixteen patients (three with GD1; six with GD2; seven with GD3) and 33 patients (nine with GD1; 13 with GD2; 11 with GD3) participated in the pre-test and main survey, respectively. All GD2 patients and one-third (6/18) of GD3 patients required caregivers to complete the questionnaire. Mean scores indicated that the burden was highest in GD2 and lowest in GD1. In the main survey, internal consistency was high (Cronbach’s alpha = 0.898 overall, 0.916 for Part 3), and test–retest reliability was high for Part 3 (kappa > 0.60 for 13/16 items) but low for Part 1 (kappa < 0.60 for 12/15 items).ConclusionsWe have developed a flexible and reliable PROM that can be tailored for use in all types of GD and propose using Parts 1 and 2 for GD1, Parts 2 and 3 for GD2, and Parts 1, 2, and 3 for GD3.

Patient reported outcomes in brachial plexus birth injury: results from the iPLUTO world‐wide consensus survey

Purpose Brachial plexus birth injuries (BPBI) can have lifelong effects on the development and functional use of the upper extremity. Currently there is no agreement with regards to what patient-reported outcome (PRO) measures should be used. Therefore, the ability to compare the effects of treatment between individuals and institutions is challenging. This study aimed to achieve consensus among clinicians on the use of PRO measures within this patient group to allow for improved comparison of treatments and outcomes in the future. Materials and Methods Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers. Results All respondents (100%) agreed that PRO measures are useful for clinical evaluation and patient treatment. None of the outcome measures scored >75% agreement for ability to assess responsiveness and current state in children with BPBI as most outcome measures were judged as not specific for BPBI. Additionally, participant centers were asked their perspective on the best available PRO option for each of the 3 categories: functional use of the upper limb, quality of life and pain. This resulted in endorsement by the participant centers of the Brachial Plexus Outcome Measure – Self-Evaluation, the Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory respectively. Conclusion International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above.

A Systematic Review of the Effectiveness of Self-symptoms Monitoring with Patient Reported Outcome Measures in Patients with Rheumatic Diseases Patients

Objective: We aimed to provide an up-to-date synthesis of the effectiveness of patient reported outcome measures (PROMs) use to self-monitor symptoms compared to conventional follow-up care in patients with rheumatic diseases. We also compared the effect of providing feedback via PROMs to a control group in which PROMs feedback was not provided. Methods: This review was guided by the Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA) guidelines. Articles published before October 2023 were retrieved from PubMed[Formula: see text], Cochrane Library[Formula: see text], Embase[Formula: see text], and PsycINFO[Formula: see text](Ovid). Studies were included if (1) they compared PROMs use compared against not using PROMs, (2) used PROMs as an intervention with feedback provided to healthcare professionals/patients to compare against PROMs use but no feedback was provided. Methodological quality and level of evidence were evaluated according to the Risk of Bias tool and the Risk of Bias in Non-randomized Studies of Interventions tool. Results: A total of 15, 571 articles were screened, 5 articles met the inclusion criteria, and 3 additional articles were identified from handsearching. Most studies reported positive results on symptom control, health-related quality of life, patient perception, shared decision making, and a reduction in clinic visits. No studies reported on survival/mortality. In general, we found conflicting evidence regarding whether feedback from physicians improved patient satisfaction in clinical care. Conclusion: We identified 8 articles through a systematic review and synthesised evidence on their effectiveness. There is a lack of studies comparing PROMs use to conventional care in rheumatic diseases. Future studies should explore the implications of using PROMs in clinical care.

Use of Knowledge Translation Action Framework to Improve Physical Therapy Rehabilitation Outcomes in Concussion Management.

Translating new evidence into clinical practice is a dynamic and iterative process. Research is ever evolving specific to concussion rehabilitation and requires a systematic approach rooted in science for translation into clinical practice. The knowledge-to-action (KTA) cycle framework is an effective strategy to ensure optimal outcomes and sustainability. The objective of this study was to investigate changes in clinical outcomes and clinician self-efficacy specific to concussion management in a suburban health care system utilizing the KTA framework. Pretraining and posttraining intervention study. Rehabilitation professionals were electronically surveyed pre-post targeted concussion educational intervention. Questions were adapted from the General Self-Efficacy scale and tailored specifically to confidence in current concussion management. Retrospective chart reviews were also completed pre-post knowledge translation educational intervention to examine practice patterns. Data from the presurvey and retrospective chart review were utilized to identify the know-do gap and design intentional educational interventions. Statistical analysis was performed utilizing SPSS (version 28). Within-group differences revealed an increase in confidence with evaluation (P = .01), intervention (P = .01), and consultation (P = .01) in concussion management. When comparing physical therapists who participated in the intervention with those who did not, there was significantly higher self-confidence in all areas (P ≤ .001) for those who engaged in the educational intervention. Pre-post chart reviews revealed improvement in clinical practice patterns in the following constructs: use of patient-reported outcome measures (P ≤ .001), objective outcome measures (P = .002), exertional testing (P ≤ .001), completion of comprehensive evaluation (P ≤ .001), and use of evidence-based practice (P ≤ .001). Utilizing the KTA framework resulted in improved self-efficacy of clinicians as well as improved clinical practice patterns in concussion management in an outpatient hospital-based practice. The KTA framework is a potential tool for translating current evidence related to concussion management for improved clinical outcomes.

The Use of Patient-Reported Outcome Measures in Oncology: Perspectives of Oncologists

The Use of Patient-Reported Outcome Measures in Oncology: Perspectives of Oncologists

Assessing the content validity of the Manchester–Oxford Foot Questionnaire in surgically treated ankle fracture patients: a qualitative study

BackgroundRoughly 10% of fractures in adults are ankle fractures. These injuries are found in both sexes and present with different fracture characteristics. The treatment varies with the patients’ biology and fracture type, and the goals are to restore stability, prevent pain and maintain ankle function. Clinicians generally use outcomes like assessment of radiography, pain level, or function. The use of patient-reported outcome measures is increasing, and the Manchester–Oxford Foot Questionnaire (MOXFQ) has been shown to have good measurement properties when validated in patients with foot and ankle disorders. However, the instrument has not been validated for ankle fracture patients. This study aims to assess the content validity of the items in MOXFQ in surgically treated ankle fracture patients.MethodsA qualitative deductive design was used to investigate patients’ response process of the MOXFQ. Individual interviews were conducted using cognitive interviewing based on the theoretical framework of the 4-step model by Tourangeau. Adult patients that were surgically treated for an ankle fracture between four weeks and 18 months were purposively sampled, and interviews followed a semi-structured interview guide. The predetermined categories were comprehension, retrieval, judgement, and response.ResultsSeventeen respondents (65% females) were interviewed. Respondents’ age ranged from 27 to 76 years. Some of the respondents in the early recovery phase were limited by post-operative restrictions and did not find the items in the walking/standing domain relevant. Respondents that were allowed weight-bearing as tolerated (WBAT) were able to recall relevant information for most items. Respondents with time since surgery more than 12 months had less pain and remembered fewer relevant episodes in the recall period. Items in the social interaction domain contained ambiguous questions and were generally considered less important by respondents. The summary index score lacked important concepts in measuring overall quality of life.ConclusionsPain was a central concept in the post-operative recovery of ankle fracture patients. The MOXFQ-subscales for pain and walking/standing had acceptable content validity in patients that were allowed WBAT. The social interaction-subscale and the summary index score had insufficient content validity for this patient population.

The implementation, use and impact of patient reported outcome measures in value-based healthcare programmes: A scoping review.

Value-Based Healthcare (VBHC) focuses on the value of patient outcomes and is achieved by ensuring resources already available are managed to realise the best possible individual and population health outcomes. Patient reported outcome measures (PROMs) measure the impact of illnesses from the patient perspective. We conducted a scoping review to understand how PROMs were implemented and used, and their impact in the context of VBHC. Arksey and O'Malley's overarching framework supplemented by principles from mixed-methods Framework Synthesis were used. CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, Web of Science, Google Scholar and reference lists were searched. An a priori data extraction framework was created using the review question and objectives as key domains against which to extract data. Mixed-methods data were organised, integrated and preserved in original format and reported for each domain. Forty-three studies were included with 60,200 participants. Few studies reported a well-developed programme theory and we found little robust evidence of effect. PROMs were universally considered to have the potential to increase patient satisfaction with treatment and services, enhance patient awareness of symptoms and self-management, and improve health outcomes such as quality of life and global health status. Evidence is currently limited on how PROMs work and how best to optimally implement PROMs to achieve the target outcome. Implementation challenges commonly prevented the realisation of optimal outcomes and patients generally needed better and clearer communication about why PROMs were being given and how they could optimally be used to support their own self-management. PROMSs have yet to demonstrate their full potential in a VBHC context. Optimal PROMs implementation is poorly understood by clinicians and patients. Future studies should explore different models of PROM implementation and use within VBHC programmes to understand what works best and why for each specific context, condition, and population.

An Evaluation of Patient-reported Outcome Measures and Minimal Clinically Important Difference Usage in Hand Surgery.

This study was designed to examine the current use of patient-reported outcome measures (PROMs) and minimal clinically important difference (MCID) calculations in the hand surgery literature in an effort to standardize their use for research purposes. A systematic review of the hand surgery literature was conducted. All nonshoulder upper extremity articles utilizing PROMs were compared between different journals, different surgical indications, and differing usage. MCID values were reported, and calculation methods assessed. In total, 4677 articles were reviewed, and 410 met the inclusion criteria of containing at least one PROM. Of the 410 articles reporting PROMs, 148 also mentioned an associated MCID. Of the articles that mentioned MCIDs, 14 calculated MCID values based on their specific clinical populations, whereas the remainder referenced prior studies. An estimated 35 different PROMs were reported in the study period; 95 different MCID values were referenced from 65 unique articles. There are many different PROMs currently being used in hand surgery clinical reports. The reported MCIDs from their related PROMs are from multiple different sources and calculated by different methods. The lack of standardization in the hand surgery literature makes interpretation of studies utilizing PROMs difficult. There is a need for a standardized method of calculating MCID values and applying these values to established PROMs for nonshoulder upper extremity conditions.

A review of the use of patient reported outcome measures (PROMS) in temporomandibular joint (TMJ) surgery

Temporomandibular joint (TMJ) surgery accounts for a significant number of patient episodes in oral and maxillofacial surgery, and treatment effectiveness is commonly assessed using measures of pain and mouth opening. Patient-reported outcome measures (PROMs) enable assessment of the patient's perspective and perception of the diseases and treatment outcomes. The purpose of this review was to assess the use of PROMs in TMJ surgery. A review of 3 databases (PubMed, OVID, Trip) was carried out to assess the use of PROMs when reporting on TMJ surgical interventions. Studies were limited to the English language, involving humans and at least one surgical intervention of the TMJ. A total of 214 articles met the inclusion and exclusion criteria, of which only 28 used 18 PROMs among them. Half of these PROMs were single-question visual analogue scales or Likert scales on quality of life and disability. The Oral Health Impact Profile and the Helkimo Clinical Dysfunction Index were the second most used (n = 3). PROMs were used most in studies on internal derangement (n = 9) and in cohort study designs (n = 26), but this was not statistically significant. In the majority of research on TMJ surgery, no PROMs are used, and when one is, there is a tendency to use weaker single-question PROMs as opposed to multi-question PROMs to assess outcomes. With the increasing importance of PROMs for assessing patients' perception of treatment outcomes, further research is needed to establish valid and reproducible PROMs for TMJ surgery.

Patient-Reported Outcomes in Venous Thromboembolism: A Systematic Review of the Literature, Current Challenges, and Ways Forward.

Venous thromboembolism (VTE) affects >1.2 million Americans annually. Although the clinical outcomes and economic burdens of VTE have been well described, the impact of VTE on patients' health status has yet to be summarized. This systematic review summarizes how patient-reported outcome measures (PROMs) have been used in VTE to date. PubMed/MEDLINE was queried for literature published through March 2023 using PROMs in a population of patients with VTE. Studies were excluded if the reference was an editorial, review, or case report, or if the study included patients with conditions other than VTE. Qualitative analyses were performed. After screening and exclusion, 136 references were identified; 5 described PROM development, 20 focused on PROM validation, and 111 used PROMs in outcomes research. The most used generic PROMs were the 36-item Short-Form Health Survey and EuroQol 5-dimensional questionnaire, and the most common disease-specific PROMs were the Venous Insufficiency Epidemiological and Economic Study-Quality of Life/Symptoms and the Pulmonary Embolism Quality of Life Questionnaire. PROMs were used to quantify the changes in health status after diagnosis, characterize the trajectory of subsequent improvement, and identify drivers of continued impairments in health status like postthrombotic syndrome and postpulmonary embolism syndrome. PROMs were also used to investigate the impact of novel treatment modalities on quality of life. This review demonstrates the many benefits of PROM use, including quantifying changes in health status with treatment, capturing patients' experiences with the treatment itself, and identifying complications of VTE. Incorporating PROMs into VTE care will be an essential component of evaluating the effectiveness of novel therapies and should lead to improved shared decision-making for patients with VTE.

Early Onset Scoliosis and Adolescent Idiopathic Scoliosis: A Review of the Literature and Correlations With Pulmonary Dysfunction.

In the managementof early onset scoliosis (EOS) and adolescent idiopathic scoliosis (AIS), orthopedic surgeons are tasked with considering the effects that curves and their treatment can have on the respiratory system, possibly the most relevant being pulmonary dysfunction due to thoracic cage changes. The pulmonary impairment that occurs as a result of scoliosis varies widely and requires a multimodal response, includingphysiologic testing, such as pulmonary function tests (PFTs) and consistent psychosocial monitoring of the patient. This forces healthcare providers to consider all factors affecting the patient's quality of life (QOL) and not just the primary pathology they are treating. One method that could be utilized to ensure a more holistic approach to treatment is the use of patient-reported outcome measures (PROMs) to assess the QOL domains. Thus, this review serves to highlight the importance of addressing and correcting pulmonary dysfunction in the care of children with EOS and AISin a holistic manner.

Patient reported outcomes measures are infrequently used in clinical studies of heart transplant recipients

Clinical trials in heart transplantation (HT) recipients have largely focused on objective outcomes such as survival; however, there is a paucity of data regarding the use of patient-reported outcome measures (PROMs) in these studies. We aimed to characterize the use of PROMs in registered clinical studies of HT recipients. All clinical studies of adult HT recipients were queried from ClinicalTrials.gov and stratified by inclusion of PROMs. Studies reporting PROMs were identified via specific search terms using the "outcomes measures" field. Summary statistics compared characteristics of studies with and without PROMs. Between November 1999 and August 2022, 227 studies of HT recipients were registered on ClinicalTrials.gov. PROMs were included in 11% (n = 24/227) of studies. Studies reporting PROMs were more likely to be conducted outside of the United States (91.7% vs 54.2%, p < 0.001) and report a greater number of primary/secondary outcomes (PROMs: median 7 [interquartile ranges (IQR): 4, 9] vs no PROMs: median 3 [IQR: 2, 6]; p < 0.001). The majority of studies reporting PROMs (58.3%) were initiated after 2020. Twenty-one distinct PROM tools/domains were reported as outcome measures, with the Short Form Health Survey 36 being most frequently used (n = 10/24). Thirteen of the 21 PROMs included questions assessing mental health, whereas only 3 PROM tools were cardiac-specific. About 1 in 10 registered clinical trials of HT recipients includes PROMs, and mental health is the most commonly assessed PROM domain. Development and validation of PROM tools is needed to fully assess health-related quality of life in HT recipients.

Outcomes that matter most to burn patients: A national multicentre survey study in the Netherlands

BackgroundThe use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. MethodsAdult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (<6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. ResultsA total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up. ConclusionsNot having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.