Journal of Patient-Reported Outcomes最新文献

Background: The integration of patient-centered care (PCC) and value-based healthcare (VBHC) principles, emphasizing personalized, responsive care and cost efficiency, is crucial in modern healthcare. Despite advocation from the International Consortium for Health Outcomes Measurement (ICHOM) for the global adoption of these principles through patient-reported measures (PRMs), their implementation, especially the pregnancy and childbirth (PCB) set, remains limited in maternity care. This study focuses on understanding the optimal organizational entity for integrating standard ICHOM-PCB-PRMs into routine maternity care in Finland. It aims to clarify the distribution of tasks among stakeholders and gather Finnish maternity healthcare professionals' perspectives on organizational responsibility in PRM collection. The emphasis was on identifying the optimal organizational framework for managing PRMs in maternity care.

Results: A total of 66 maternity healthcare professionals participated in the study, reaching a consensus that public maternity care centers in Finland should be the primary entity responsible for managing PRMs in the maternity sector. Key aspects such as confidence with the role as a mother, maternal confidence with breastfeeding, and satisfaction with the result of care were identified as crucial and should be inquired about in both public maternity care centers and hospital maternity wards. The findings highlight the importance of comprehensive and consistent attention to these PRMs across public maternity care centers and hospital maternity settings to ensure holistic and effective maternal care.

Conclusions: The study highlights the central role of public maternity care centers in the collection and management of PRMs within Finnish maternity care, as agreed upon by the professional consensus. It underscores the importance of a consistent and holistic approach to PRM inquiry across different care settings to enhance the quality and effectiveness of maternity care. This finding is crucial for policymakers and healthcare practitioners, suggesting that reinforcing the collaborative efforts between public maternity care centers and hospital maternity wards is vital for a patient-centric, efficient healthcare system. Aligning with PCC and VBHC principles, this approach aims to improve healthcare outcomes for pregnant and postpartum women in Finland, emphasizing the need for a unified strategy in managing maternity care.

Background: The aim of this study was to determine the psychometric properties of the Spanish-language version of the HIV-Symptom Index (HIV-SI) questionnaire in Spanish patients undergoing antiretroviral therapy.

Methods: Between 2014 and 2016, an observational, multicenter, prospective cohort study was conducted in seventeen Spanish hospitals to validate HIV-SI questionnaire in terms of: construct validity (confirmatory factor analysis), internal consistency (Cronbach's alpha), convergent validity (Pearson's correlation coefficient) and Known-group validity. In addition, a sensitivity to change analysis was also performed.

Results: A total of 232 patients were included in the study. They had a mean age of 46.17 (SD9.82) and were 75% male. The median overall score for the HIV-SI was 10 (IQR 4- 19.5) and the most common symptoms reported were feelings of nervousness or anxiety, fatigue or energy loss, feeling sad or depressed, stomach pain or bloating, and difficulty sleeping. In the current study, the Spanish HIV-SI questionnaire showed a high internal consistency (α = 0.89) and adequate construct validity (CFI and TLI > 0.90). When contrasted with the MOS-HIV questionnaire, an inverse correlation was found. It showed a good association with the mental (r=-0.61; P < 0.0001) and physical score (r=-0.60; P < 0.0001). In a multivariate analysis, the age of the patient, female condition, hepatitis C coinfection, concomitant treatment and non-adherence resulted in a higher HIV-SI score.

Conclusions: Our study has shown that the Spanish HIV-SI is a valid and reliable self-administered PROM for routine measurement of patient- reported symptoms among Spanish patients on antiretroviral treatment.

Purpose: Patient experience is fundamental to Patient-Centered Care (PCC). Although prior bibliometric research studies have focused on various aspects of PCC, a comprehensive analysis of PREM articles is required to understand its impact on the clinical practices. This study aims to analyze the top 100 most-cited PREM articles to examine the critical studies and related trends.

Methods: The 100 most cited articles on PREM were gathered from the Web of Science using a combination keyword search approach. The following information was extracted: study design, sample size, topic, number of citations, authorship, country, year of publication, journal title, and dimensions included in these PREM instruments. The VOSviewer software was used to generate graphical bibliometric networks.

Results: The citation count of the top 100 PREM articles varied from 20 to 775 citations. 21 articles had received a minimum of 100 citations. All the articles were in English, and out of these 45% were from the USA. The cross-sectional study (69%) was the most common study design, and the impact of treatment (44%) was the most frequent topic. The common PREM instruments used were customized PREM questionnaires (16%) and HCAHPS (10%).

Conclusion: This bibliometric research showed that the area of PREM is far from being saturated. The authors have attempted to provide an overview of global PREM research. Future research should focus on studies from underdeveloped and developing countries to develop condition-specific PREM tools. Longitudinal researches among special populations and studies in day-care and outpatient settings are recommended in future.

Background: Lupus nephritis (LN), a severe organ manifestation of systemic lupus erythematosus (SLE), significantly impacts health-related quality of life (HRQoL). Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) and Lupus Quality of Life (LupusQoL) have been validated to measure HRQoL in SLE, but not specifically in LN. Patient-reported symptoms of LN are not well-reported. We assessed the content validity and relevance of these measures in evaluating patients with LN and their LN-related experiences.

Methods: This qualitative, interview-based study enrolled patients with LN from three US sites from a larger, retrospective survey study. The interview comprised an open-ended concept elicitation part and a more structured cognitive part. Concept elicitation was used to identify relevant themes describing the patients' experiences. Patients were asked to describe their LN-related symptoms, the severity and impact of those symptoms and their satisfaction with treatment. A cognitive interview approach evaluated the appropriate understanding of the items, instructions, and response options and asked patients about their understanding of the FACIT-Fatigue or LupusQoL measures, their relevance to the condition, and any aspects of confusion or need for better clarity of the questionnaires. All interviews were recorded and transcribed. The concept elicitation data were coded, while the cognitive interview data were tabulated to present the participants' responses next to the interview questions to support the evaluation of their understanding of the questionnaire items.

Results: Overall, 10 patients participated in FACIT-Fatigue and another 10 in LupusQoL interviews; 18 patients were female, 10 were Black (self-reported) and 17 were receiving maintenance treatment for LN with stable disease activity. When patients recalled their symptoms, 670 expressions of varying symptoms were reported. All patients described pain, discomfort, and energy-related symptoms. Urinary frequency and non-joint swelling were most frequently attributed to LN rather than SLE. Patients felt the questions asked in the FACIT-Fatigue and LupusQoL surveys were relevant to their LN experience.

Conclusions: The symptoms reported by patients with LN were consistent with symptoms reported by the overall SLE population. However, patients indicated that some symptoms of LN were more profound than symptoms of SLE alone, affecting a broad range of areas of daily life activity and resulting in a higher burden on their HRQoL. FACIT-Fatigue and LupusQoL demonstrated content relevance as meaningful tools for patients with LN. However, further quantitative data collection is needed to ensure that these patient-reported outcome tools demonstrate good measurement properties in an LN population.

Background: Using Patient Reported Outcome Measures (PROMs) in clinical settings can improve patient outcomes by enhancing communication between patient and provider. There has been significant improvements in the development of PROMs, their implementation in routine patient clinical care, training physicians and other healthcare providers to interpret the PROMs results to identify any issues reported by the patient, and to use the PROMs results to provide or modify the treatment.

Main body: Despite the increased use of PROMs, the lack of PROM completion by patients is a major concern in the optimal use of PROMs. Studies have shown several reasons why patients do not complete PROMs and one of the reasons is their lack of understanding of the significance of PROMs and their utility in their clinical care. While examining the various strategies that can be used to improve the uptake of PROM completion by patients, educating patients about the use of PROMs has been recommended. There is less evidence on how patients are trained or educated about PROMs. It may also be possible that the patient education strategies are not reported in the publications. This brings up the question of evaluation of the educational strategies used.

Conclusion: Our symposium at the 2023 ISOQOL conference brought together a range of experiences and learning around patient-centered PROMs educational activities used in the Netherlands, Canada, and the UK. This commentary is aimed to describe the lay of the land about educational activities around the use of PROMs in clinical care for patients, recognizing the gaps, and posing questions to be considered by the research and clinical community.

Background: This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol-5 Dimension-5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL.

Results: A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income < 2.5 lakh Indian rupees (3009 USD). The mean EQ-5D-5L and EuroQoL Visual Analog Scale (EQ VAS) scores of the study participants were 0.714 and 69.73, respectively. The variables ADR severity, income, and age showed a significant difference (p < 0.05) in HRQoL.

Conclusion: This study provides insights into HRQoL among patients with ADRs and identifies the determinants of HRQoL. The findings of this study will contribute to improving patient-centered care and optimizing patient outcomes.

Background: Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.

Methods: Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.

Results: Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.

Conclusion: Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

Background: Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.

Methods: We conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.

Results: Patients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.

Conclusions: Management of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.

Clinical trial registration: This is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).

Background: Assessment of QoL has become an essential component in the holistic care of patients with acne. The Cardiff Acne Disability Index (CADI) is used globally to assess quality of life (QoL) in patients with acne. This study was done to validate CADI in Tamil, as 90 million of the global population are native speakers and Tamil is an official language of several countries.

Methods: CADI was translated and validated into Tamil according to published guidelines. The Tamil versions of both CADI and Dermatology Life Quality Index (DLQI), was administered to 150 Sri Lankan young adults with acne. The clinical severity was assessed using the Global Acne Grading System (GAGS). Discriminant validity was tested by comparing the results of CADI with those of GAGS and DLQI, using reliability, validity, Cronbach's alpha, and Spearman's correlation coefficient measurements. Construct validity was assessed by factor analysis.

Results: 70% were female, and the mean age was 25.1 (SD, 5.2). The majority (91.3%) had acne of mild to moderate severity when measured by GAGS. CADI-Tamil showed high internal consistency and reliability (Cronbach's alpha coefficient = 0.83). The CADI total score showed a strong correlation (0.86) with that of DLQI. The correlation between CADI and GAGS was low, whereas CADI had a high and significant correlations with the DLQI. The construct validity explained 61% of the variability.

Conclusions: The CADI-Tamil is a reliable and valid tool for assessing the QoL of Tamil speaking patients with acne. This tool will help clinicians understand the patient's perspective on acne.