Quality of Life Research最新文献

Purpose: Inflammatory bowel disease (IBD) is a chronic condition affecting the digestive system with symptoms that are often episodic, unpredictable, socially stigmatizing, and impact quality of life. While a timely diagnosis reduces the risk of complications and improves health outcomes, diagnostic delays (DDs) are common. Our study used narratives and data from patient-reported outcome measures (PROMs) of individuals diagnosed with IBD to examine: (1) What factors helped or hindered achieving a timely diagnosis of IBD? and (2) how do DDs relate to PROMs?

Methods: We conducted a mixed-methods study of 296 individuals diagnosed with IBD in Canada. The survey included a set of validated measures that assessed depression, fatigue, satisfaction with life, disease severity, and several open-ended questions.

Results: Thematic analysis of open-ended responses revealed five themes that highlighted the ways a diagnosis was delayed or facilitated: symptom ambiguity, fear and denial, patient-provider communication breakdown, misdiagnosis and self-doubt, and self-advocacy. Quantitative findings revealed that a longer time to receive a diagnosis was significantly correlated with higher levels of depression (r = .26) and fatigue (r = .25), reduced satisfaction with life (r =  - .25), and greater disease severity (r =  - .22). We used the data to generate a framework called the Diagnostic Pathways Model to illustrate the diagnostic process of a chronic disease such as IBD.

Conclusion: DDs involve the interacting roles of patient, medical, and communication factors, and a DD can negatively impact a patient's quality of life. Implications for physician-patient communication and public information are discussed.

Objectives: The Gambling Quality of Life Scale -brief (GQoLS-Brief) assesses the impact of gambling disorder (GD) on quality of life (QoL). Preference-based measures are essential for obtaining the quality adjustment weight (i.e. utility score) needed to calculate quality-adjusted life years (QALYs) in economic evaluations. We aimed to derive a value set for the GQoLS-Brief.

Methods: We employed a discrete choice experiment for preference elicitation. An online survey was administered (n = 928). Respondents completed 10 choice tasks, each presenting two GQoLS-Brief health states alongside life expectancy. Conditional logit regression, parameterized to fit the QALY framework, was used for data analysis. QALY weights for each health state defined by the GQoLS-Brief were calculated.

Results: The estimated coefficients from the conditional logit models aligned with expectations: utility increased with survival time and decreased with QoL impairment. Utility values for health states ranged from - 1.48 (worse than death) to 1.0. "Financial difficulties" exhibited the highest utility decrement, followed by "Sleep disturbance related to financial difficulties."

Conclusions: This reference set facilitates the calculation of QALYs for economic evaluations of GD interventions. The weight of subjective financial difficulties underscores the need for therapeutic interventions to target this aspect.

Purpose: The Myelofibrosis Symptom Assessment Form version 4.0 (MFSAF v4.0) comprises 7 common MF symptom items (fatigue, night sweats, pruritus, abdominal discomfort, pain under the left ribs, early satiety, bone pain) and is the first patient-reported outcome (PRO) instrument designed to assess MF symptom burden. Given that information on the psychometric properties of this instrument has been limited, we sought to evaluate its measurement properties and validate its use in the phase 3 MOMENTUM trial.

Methods: Data were pooled to assess MFSAF item distribution, structural validity, reliability (test-retest and internal consistency), construct validity (convergent, divergent, and known-groups), and sensitivity to change. Other PRO measures included Patient Global Impression of Severity/Change (PGIS/PGIC), EORTC QLQ-C30, PROMIS Physical Function Short Form 10b, and ECOG performance status.

Results: Participants (N = 195) showed high completion rates (> 93%) across 24 weeks. Moderate to strong Spearman correlation coefficients among items were mostly observed at baseline (range, 0.289-0.772) and week 24 (range, 0.391-0.829), which supported combining items into a multi-item scale and total score. Internal consistency (Cronbach's α, 0.877 at baseline and 0.903 at week 24) and test-retest reliability (intraclass correlation coefficient, > 0.829) were satisfactory across selected time intervals. Reliability was also supported by McDonald's omega (ω) coefficient (> 0.875). MFSAF moderately correlated with PRO measures of similar content, differentiated between PGIS and ECOG groups (P < .001), and was able to detect change over time.

Conclusions: The MFSAF v4.0 is a valid tool to assess MF symptom burden, supporting its use in future trials in similar populations.

Purpose: Hearing loss, deafness, and other hearing-related conditions can significantly impact quality of life; numerous qualitative studies have sought to describe these impacts. Synthesis of these findings may provide additional or more robust insights.

Methods: A qualitative systematic review of studies reporting qualitative data relating to the impact of hearing problems on adults' health-related quality of life. A subset of studies was included in the review and subsequently analysed using a thematic approach.

Results: The literature search yielded 129 studies, of which 22 met our inclusion criteria and were included for analysis. The included studies, primarily from Australia, the UK, and the USA, involved approximately 450 participants with various hearing conditions. Semi-structured interviews and focus groups were the most common data collection methods, with thematic analysis being the predominant analytical approach. Three overarching categories of descriptive themes were identified: Physical, Mental, and Social. Physical encompassed sound localization, sound clarity, speech, and physical fatigue. Social included relationships, isolation, communication, independence, work function, social stigma, and confidence. Mental encompassed depression, anxiety, listening effort, mental fatigue, fear, and identity. The identified themes shed light on the diverse domains of health-related quality of life affected by hearing conditions.

Conclusion: Differences in hearing function impact upon people's health-related quality of life in a variety of ways relating to physical, mental, and social aspects of health, and these themes are clearly demonstrated across qualitative studies. These results will inform the development of hearing-specific questionnaire items for with the EQ-5D descriptive system, a commonly used patient-reported outcome measure.

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with anxiety and depressive symptoms. Psychological symptoms are predisposing factors for, as well as symptoms of, ME/CFS. Recovery from ME/CFS is poorly understood and heterogenous, and it is unclear how psychological symptoms may change with recovery. The aim of this study was to examine the associations of depressive and anxious symptoms among individuals with current, previous, and no history of ME/CFS.

Methods: National Health Interview Survey 2022 data were analyzed to assess ME/CFS status, as well as anxiety and depression burden. Adults (unweighted N = 27,651) in the United States reported sociodemographic and health behavior characteristics, with 453 adults reporting current ME/CFS, while 119 reported previous ME/CFS. Sample weights and variance estimation variables were implemented. Multivariable linear regression models were used to analyze the associations between ME/CFS status and anxiety and depression severity after adjusting for sociodemographic and health behavior variables.

Results: Participants were on average 48.1 years of age, and most identified as female (51.3%), white (76.6%), and not Hispanic or Latine (82.8%). Current and previous ME/CFS were associated with anxiety and depressive symptoms compared to individuals with no history of ME/CFS. Clinically significant levels of anxiety and depressive symptoms were substantial for individuals with current (37.6%; 49.0%) and previous (26.5%; 33.4%) ME/CFS compared to individuals with no history of ME/CFS (6.1%; 6.7%).

Conclusion: ME/CFS, regardless of current presence, was related to significantly greater anxiety and depressive symptom burden.

Purpose: Patient reported outcome measures (PROMs) are well-suited for the longitudinal assessment of quality of life, including depression and physical limitations associated with peripheral artery disease (PAD) that are not routinely assessed in clinical care. This study was designed to gain the patient perspective to facilitate implementation of PROMs into clinical practice for PAD management.

Methods: Twenty-three patients with PAD at a single vascular surgery clinic were enrolled for a qualitative interview, July-December 2022. Patients completed PROMIS Physical Function and Depression assessments before undergoing semi-structured interviews. Two researchers used an inductive thematic analysis to analyze emergent themes from transcribed interviews.

Results: The average age of participants was 69.5 ± 8.2 years; 91% were Caucasian, and 39% were female. Qualitative interviews revealed three implementation-related themes: (1) patient preferences on the timing and type of PROMs collected, (2) PROMs applications in outpatient PAD care, including discussions with their physician, and (3) the clinical value of PROMs. Overall, patients with PAD prefer PROMs related to quality of life and physical function over other domains. Patients appreciate the convenience to complete PROMs before their appointment. Patients would like to verbally discuss meaningful score changes with their providers without the use of graphical aids. Most patients believe PROMs are valuable in their clinical care if their physician reviews the results and the PROM questions apply to their disease symptoms.

Conclusions: Patient preferences inform future successful implementations and will improve patient completion rates for the collection and clinical use of PROMs in PAD clinical care.

Purpose: Thrombotic cardiovascular diseases profoundly impact patients' health-related quality of life (HRQoL). However, patient-reported outcome (PRO) instruments that are disease-specific or antithrombotic-treatment focused, developed according to US Food and Drug Administration (FDA) guidance on PROs, and can be used in clinical trials, are lacking. The aim of this study was to understand concepts important to patients diagnosed with coronary artery disease (CAD) or acute coronary syndrome (ACS), atrial fibrillation (AF), or stroke who require antithrombotic treatment for reducing risk of future thrombotic events (indications being evaluated for an investigational new drug), identify PROs that measure relevant symptoms and impacts, and determine acceptability of PROs from a health technology assessment (HTA) perspective.

Methods: A landscape review, conducted between January 2009 and October 2020, included a search of qualitative literature (OVID), a review of PRO instruments using multiple sources (e.g., OVID and clinical trials databases), and a survey of HTA decisions for antithrombotic medications.

Results: The qualitative literature review identified 27 publications used to develop a high-level conceptual summary of symptoms and HRQoL impacts reported by patients. The instrument landscape review indicated that generic PROs have been utilized for thrombotic indications, but disease-specific, fit-for-purpose instruments are lacking, and the HTA review revealed that although HTA agencies discussed PRO instruments, evidence of specific recommendations was not found.

Conclusion: To ensure patients' experiences, perspectives, and priorities are incorporated into drug development and evaluation, a core set of PROs for thrombotic indications that meet health authority guidance and are acceptable to HTA agencies is needed.

Purpose: To explore the characteristic quality of health profiles of children with paediatric acquired brain injury (pABI), and to investigate whether improvement in executive function (EF) following cognitive rehabilitation is associated with improvement in health-related quality of life (HRQOL).

Method: A study of secondary endpoints in a blinded, parallel-randomised controlled trial with children (ages 10-17 years) with pABI and executive dysfunction. Data was obtained from 73 children-parent dyads. Explorative analyses were conducted comparing baseline with 8-week post-intervention, and 6-month follow-up data. Outcome measures included the EQ-5D-Y-3L health dimensions and the visual analogue scale (VAS).

Results: At baseline and 6-month follow-up, mean (SD) VAS were 76.22 (17.98) and 79.49 (19.82) on the parent-report, and 77.19 (16.63) and 79.09 (17.91) on the self-report, respectively. Comparing children who improved EF to those who did not improve/worsened, no significant improvement was found for the VAS (parent-report) over time (BRIEF-BRI: F = 2.19, p = 0.12, BRIEF-MI: F = 2.23, p = 0.12) for either group. A significant main effect by group was found for BRIEF-MI (F = 4.02, p = 0.049), but no time*group interaction (F = 0.414, p = 0.662).

Conclusion: The children and their parents reported only minor problems across EQ-5D-Y-3L dimensions and evaluated overall health as relatively good. Participants with a clinically significant change in the metacognitive aspect of EF had higher HRQOL. Cognitive interventions aiming to ameliorate deficits in EF in pABI may be beneficial to improve HRQOL.

Introduction: This study assessed the influence of intrapersonal (one's own emotions) and interpersonal (emotions of others) emotional competence (EC) of informal caregivers on their quality of life (QoL) at the beginning of cancer care.

Methods: Participants completed two questionnaires assessing their intrapersonal and interpersonal EC (S-PEC) as well as their QoL (SF-36) at the beginning of treatments. Multivariate ANCOVA regression analyses were then performed to explore the influence of EC on QoL.

Results: The questionnaires were completed by 203 caregivers. As expected, intrapersonal EC was associated with a better QoL in all sub-dimensions (p < 0.01). More surprisingly, interpersonal EC was associated with worse QoL in terms of physical role (- 8.97 [95% CI - 16.74; - 1.19]), emotional role (- 8.37 [95% CI - 16.27; - 0.48]), and general health (- 4.50 [95% CI - 8.08; - 0.92]).

Conclusion: Intrapersonal EC should be improved for better QoL of caregivers of cancer patients. However, the more caregivers are attentive to the emotions of others (e.g., by identifying, understanding, listening and helping to manage emotions), the more their physical and psychological state has an impact on their daily life and their perceived health is impaired.