Quality of Life Research最新文献

Purpose: This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care.

Methods: A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibility and relevance of the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT.

Results: Co-research with people with dementia and their supporters was critical to the development of an effective and accessible tool. Issues identified with comprehension, recall, judgement and response were addressed through iterative adjustments to design, layout and wording. An unexpected finding was that illustrations were disliked or disregarded by the majority of people, and, in particular, those living with dementia. This result contrasts with the typical assumption of easy read approaches, where illustrations are expected to enhance comprehension.

Conclusion: The ASCOT-ER measure for older people is suitable for older people using social care services with mild to moderate dementia, mild cognitive impairment and other age-related needs. The revisions applied were designed to improve comprehension, judgement and response for this group and even those who were most cognitively impaired experienced fewer issues by the final round of testing. Nonetheless, some prompting was still required, particularly for those with higher levels of cognitive impairment and it is likely that some respondents will require the questionnaire to be administered in an interview format.

Purpose: Maxillofacial reconstruction with dental implants in microvascular tissue flaps aims to improve mastication. However, the quality of life (QoL) impact of this intervention is yet to be determined. This systematic review assessed the QoL impact of maxillofacial reconstruction with implant-supported teeth compared to no dental rehabilitation, removable dentures, and obturator (modified denture). Additionally, we examined instruments applied to measure QoL in maxillofacial reconstruction.

Methods: Databases Ovid Medline and Embase, Scopus, Web of Science and Handle on QoL were searched. Cohort, case-control and randomized controlled trials (RCT) were narratively synthesized for QoL captured through validated instruments. Study methodological quality was assessed using Cochrane Risk of Bias 2 and Risk of Bias in Non-randomized studies of Exposure. Instruments underwent COSMIN content validity analysis.

Results: Of a total of 2735 studies screened, the three included studies (two cohort and one RCT) showed improved QoL with maxillofacial reconstruction compared to obturator and no dental rehabilitation. However, these studies have high risk of bias due to confounding. None of the instruments achieved a sufficient relevance rating for maxillofacial reconstruction, having been designed for other target populations and there is no evidence on their content validity for this population, but the EORTC QLQ30 H&N35 satisfied more COSMIN criteria than the UW-QOL and OHIP-14.

Conclusion: Although studies showed favourable QoL with maxillofacial reconstruction involving dental implants, these have high risk of bias and further studies are needed to establish the impact. Existing QoL instruments lack content validity and tailored instruments are needed for QoL evaluation in maxillofacial reconstruction.

Purpose: To present EQ-5D-5L population norms for the general adult population in Alberta, Canada.

Methods: We analyzed data from 11 population-based surveys conducted in Alberta between 2012 and 2021. By applying appropriate sampling weights, we estimated normative data for the EQ-5D-5L dimensions, index scores, and visual analogue scale (VAS) scores. This analysis was conducted for the overall population as well as for subgroups categorized by age, sex, provincial health zones, and 17 chronic conditions.

Results: The analysis included data from 60,447 respondents (ages 18-99; 51.4% female) across various survey waves, revealing minimal variations in sample characteristics and EQ-5D-5L scores over time. The most frequently reported problems were pain/discomfort (62.2%) and anxiety/depression (41.7%), while 22.5% of respondents reported no issues on any dimension. The mean (SD) EQ-5D-5L index score was 0.845 (0.137), and the mean EQ VAS score was 77.4 (16.7). There was a notable increase in the proportion of reported problems across all dimensions with age, except for anxiety/depression, which showed a decline with advancing age. Females reported slightly more problems across all dimensions compared to males. Individuals with chronic pain had the lowest EQ-5D-5L index scores, followed by those with anxiety and depression, while the lowest EQ VAS scores were observed in individuals with congestive heart failure, kidney disease, and chronic obstructive pulmonary disease.

Conclusion: This study provides EQ-5D-5L norms for the adult population in Alberta. These reference values can be used to benchmark patients' outcomes as well as to establish burden of illness in this population and facilitate the interpretation of EQ-5D-5L scores in various applications.

Purpose: This longitudinal study evaluates whether the Patient-Reported Outcomes Measurement and Information System (PROMIS)-16 domains capture average change over time comparable to the PROMIS-29 + 2 and have similar associations with change in overall health rating and two disability indices.

Methods: Data were collected using Amazon's Mechanical Turk at baseline, 3 months, and 6 months among individuals reporting chronic low back pain. The analytic sample includes respondents who completed baseline and at least one follow-up assessment (N = 1137). We estimated latent growth models for eight PROMIS domains and compared growth parameters between the PROMIS-16 and PROMIS 29 + 2 with a z-test. Additionally, for each domain, random intercept and slope scores for individuals were computed for the PROMIS-29 + 2 and PROMIS-16 and correlated to estimate concordance. Using growth parameters for physical function and pain interference, we predicted average change in the Oswestry Disability Index (ODI), Roland Morris Disability Questionnaire (RMDQ), the overall health rating, and compared regression coefficients between the PROMIS-16 and PROMIS 29 + 2.

Results: All growth models fit the data well. Intercept and slope parameters were statistically comparable (p's > 0.05) in magnitude across all domains between the PROMIS-16 and PROMIS-29 + 2. Correlations between random intercept and slope scores for individuals across domains were high. Additionally, the regression coefficients between slopes for pain interference and physical function and ODI, RMDQ, and overall health rating were statistically comparable (p's > 0.05) between the PROMIS-16 and PROMIS 29 + 2.

Conclusion: Results provide between-level support for the longitudinal and predictive validity of the PROMIS-16. Similar average baseline scores and changes over time were observed between PROMIS-16 and PROMIS-29 + 2. Further, average change estimates comparably predicted average change in distal outcomes. This work provides evidence supporting the utility of the PROMIS-16 as a viable, short-profile option for use in clinical and research settings.

Purpose: Patient-reported outcome measures (PROMs) are widely used in medicine. As older adults, who may rely on a proxy caregiver for answers due to cognitive impairment, are representing an increasing share of the traumatically injured patient population, proxy-reported outcome measures (proxROMs) offer a valuable alternative source of patient-centered information although its association with PROMs is unclear. The objective of this scoping review is to discuss all available literature comparing PROM and proxROMs in adult patients with musculoskeletal trauma to guide future research in this field.

Methods: The PRISMA extension for Scoping Reviews was used to guide this review. MEDLINE, Embase, Web of Science, and the Cochrane Central Register of Controlled Trials were searched without date limit for articles comparing PROM and proxROMs in setting of musculoskeletal trauma. Abstract and full-text screening were performed by two independent reviewers. Variables included study details, patient and proxy characteristics, and reported findings on agreement between PROMs and proxROMs.

Results: Of 574 unique records screened, 13 were included. Patient and proxy characteristics varied greatly, while patients' cognitive status and type of proxy perspective were poorly addressed. 18 different PROMs were evaluated, mostly reporting on physical functioning and disability (nine, 50%) or quality of life (six, 33%). Injury- and proxy-specific tools were rare, and psychometric properties of PROMs were often not described. Studies reported moderate to good agreement between PROMs and proxROMs. There is less agreement on subjective outcome measures (e.g., depression score) compared to observable items, and proxy bias results in in worse outcomes compared to patient self-reports.

Conclusion: Current literature, though limited, demonstrates moderate to good agreement between injured patients' self- and proxy-reports. Future studies should be mindful of current guidelines on proxy reporting when developing their studies and consider including neglected populations such as cognitively impaired patients to improve clinical validity.

Purpose: Patient reported outcome measures (PROMs) are increasingly used in oncology care, but pharmacists providing direct patient care have been overlooked. We engaged pharmacists and adults receiving oral oncolytics (chemotherapy medication taken by mouth) to develop a SmartForm© in the electronic health record (EHR) for PROM monitoring. Pharmacists verbally ask the patient side effect questions during routine telehealth encounters and enter responses in real time.

Methods: Our development process was guided by the Knowledge to Action Framework. In phase 1 (Knowledge Inquiry), we prioritized side effects to assess in the EHR SmartForm© via interviews with patients and a Delphi panel with pharmacists. Adults receiving oral oncolytics for breast (n = 12), thoracic (n = 12), or hematological (n = 12) cancer were interviewed, with purposeful sampling for adults who were aged 65 + years or Black. Interviews were coded with content analysis. We conducted three Delphi rounds, with 11/19, 13/19, and 19/19 pharmacists, respectively. In phase 2 (Knowledge Synthesis), PROM items were selected and the EHR SmartForm© programmed. In phase 3 (Knowledge Tailoring), we conducted usability testing with pharmacists.

Results: Pharmacists and patients were consistent in prioritizing side effects of oral oncolytics and 10 were retained. Patients advocated asking whether they can do their usual activities, while pharmacists added medication adherence. Usability testing yielded suggestions to simplify the SmartForm©.

Conclusion: By presenting screenshots of our SmartForm©, our findings are useful to other healthcare systems looking for a PROM solution integrated in the EHR, with a reasonable pharmacist/clinician workload, and no requirement for patients to have internet access/comfort.

Background: Despite advances in transplant procedures, children and adolescents still face some challenges post-transplant and are at high risk for psychiatric, academic, and social problems. This study aims to explore the lived experiences of adolescent kidney transplant recipients through interviews and the use of mandala art therapy.

Methods: This study adopted a descriptive phenomenological design and thematic analysis approach based on Husserl's philosophy. The sample included kidney transplant recipients aged 12-18 years admitted to the pediatric nephrology polyclinic of a university hospital in southern Türkiye. Data were collected through in-depth interviews conducted during a mandala art activity with 14 adolescent kidney transplant recipients. The qualitative data were analyzed using Colaizzi's seven-stage qualitative analysis method, which is suitable to the descriptive phenomenological design employed in the present study.

Results: Four themes and seven subthemes emerged from the data related to the problems and experiences of adolescents with kidney transplantation and growing up with a new kidney. (1) Education, (2) Ideas about the kidney; including the sub-themes "What the kidney transplant process gave them, Feelings about their kidneys", (3) Family; including the sub-themes "Relationship with the donor, Relationship with siblings", (4) Social environment; including the sub-themes "Experiences with hospital, Relationship with friends and Desire for friendship with a transplanted Peer".

Conclusion: Mandala art therapy-assisted interviews are an effective communication method for adolescent kidney transplant recipients to express their feelings and thoughts and to look at life from a broader perspective. Understanding the life experiences of adolescents with kidney transplantation and the difficulties they face may enable better and more systematic planning of the care to be given to them.

Purpose: Bookmarking is a qualitative method used to assign descriptive labels to ranges of patient-reported outcome (PROM) scores. We aimed to evaluate variability between bookmarking samples and test score ranges where there was variability in expert opinion in previous studies.

Methods: We conducted two bookmarking sessions with patients who experienced orthopaedic fractures (n = 11) and one session with orthopaedic clinicians (n = 10). Participants reviewed vignettes comprised of PROM items and responses that represented hypothetical patients with a range of severity. Vignettes were constructed for PROMIS Upper Extremity Function, Physical Function, and Pain Interference measures. Participants placed bookmarks between vignettes that reflected different levels of severity (e.g., mild, moderate). The score reflecting the midpoint between vignettes was used as the recommended threshold between categories. We evaluated the variability in thresholds across participants, bookmarking panels, and previous studies.

Results: Although patients and clinicians were not unanimous, the majority agreed on thresholds separating levels of severity for PROMIS Upper Extremity (≥ 40 = within normal limits, 30-39 = mild, 23-29 = moderate, < 23 = severe), PROMIS Physical Function (≥ 46 = within normal limits, 38-45 = mild, 26-37 = moderate, < 26 = severe), and PROMIS Pain Interference (≤ 50 = within normal limits, 51-60 = mild, 61-68 = moderate, > 68 = severe).

Conclusion: Testing new vignette scores within the same patient population enables more nuanced testing of score ranges without clear consensus and provides additional evidence for recommending thresholds for severity categories. These thresholds can be utilized to help interpret PROMIS scores from patients receiving orthopaedic care.

Introduction: Patient Reported Outcome Measures (PROMs) are used widely to collect patient perspectives on their Health-Related Quality of Life (HRQoL) after stroke. Existing reviews on PROMs typically report the psychometric properties but rarely focus on the content validity. We performed a structured review of the content of items of stroke-specific HRQoL outcomes.

Methods: We searched four databases using a combination of terms (Stroke, HRQoL, PROMs) to choose the three most frequently used stroke-specific HRQoL-related PROMs. Two raters independently linked the items of the Stroke Impact Scale, Stroke Specific Quality of Life and the Stroke and Aphasia Quality of Life to the International Classification of Functioning, Disability and Health (ICF) and Item Perspective Classification (IPC). We compared the ICF codes to the ICF Core Sets for Stroke and calculated ICF linkage indicators.

Results: More than 75% of the content for all three PROMs is represented in the Comprehensive Stroke Core Set, indicating the universality and validity of the content of these PROMs. All three PROMs represent the content of the ICF Core Sets for Stroke to a similar extent. Most items use an Intensity response option and have a Descriptive perspective. On the IPC framework, most items have a Rational appraisal type and represent the Biological domain.

Conclusion: Clinicians and researchers should use patient goals as a reference to choose the appropriate PROM. A deeper understanding of the content of PROMs can help clinicians and researchers make informed decisions on which HRQoL outcomes to use among people following stroke.