Patient-Patient Centered Outcomes Research最新文献

Background: Bypassing primary healthcare (PHC) in favor of higher-level providers is a persistent issue in many low- and middle-income settings, particularly in rural China, where primary eye care (PEC) remains underutilized. Understanding patient preferences and determinants of care-seeking behavior is crucial for promoting patient-centered outcomes and strengthening PHC utilization.

Objectives: This study aimed to identify the key service attributes and patient characteristics influencing rural residents' preferences for PEC in Xinjiang, China, and to assess the role of health literacy in mitigating PHC bypass behavior.

Methods: A discrete choice experiment (DCE) was conducted among 465 rural adults (aged ≥ 18 years) in northern Xinjiang, who were selected using a multistage stratified sampling approach. Six PEC service attributes-cost, convenience, organizational form, provider type, service frequency, and feedback mechanism-were tested. The cost and convenience attributes each had four levels, while the other four attributes had three levels. Respondents completed a structured questionnaire assessing knowledge, attitudes, and practices related to eye health. Data were analyzed using mixed logit and latent class models to estimate preference heterogeneity and willingness to pay (WTP) for different attributes.

Results: Rural residents demonstrated strong preferences for services provided by county hospital ophthalmologists, lower costs, shorter travel times, and comprehensive feedback, including medical advice and verbal explanations. PHC-based PEC delivered by township or village doctors was significantly less preferred, requiring monetary compensation to offset perceived utility loss. Enhanced feedback mechanisms and higher health literacy were associated with greater acceptance of PHC-based services. Latent class analysis revealed significant heterogeneity, identifying subgroups that were sensitive to cost and convenience, as well as a large subgroup with low engagement and a tendency to rely on higher-tier care. This subgroup exhibited the lowest preference for PEC services at the PHC level, highlighting a potential barrier to the utilization of local services.

Conclusions: Efforts to strengthen PHC-based PEC in rural China must address both structural and perceptual barriers, prioritizing quality improvement, provider-patient communication, and health literacy interventions. Patient-centered service design, informed by DCE-derived preferences, may reduce bypassing and promote more equitable access to eye care.

Background: People receiving treatment for advanced cancer invest substantial portions of their survival time receiving healthcare, labelled the 'time toxicity' of treatment. Although qualitative research has examined the impact of time burden on patients and their caregivers, its influence on treatment decision-making is unclear.

Objective: Our objective was to explore treatment decision-making with patients with advanced gastrointestinal cancer, their caregivers, and oncologists, and unmask the role of time burden in those decisions. The objective was to inform the design of a subsequent discrete-choice experiment (DCE) investigating the importance of time burden in treatment decision-making.

Methods: A two-step process was used. Factors relevant to treatment decision-making were discussed as part of semi-structured interviews. Responses were analysed using thematic analysis with a focus on measurable themes relevant to the development of candidate attributes for a DCE. Second, we reviewed stated-preferences studies in the field of treatment decision-making in cancer and compared the results with the candidate attributes identified from interviews.

Results: Interviews with 45 participants (20 patients, 10 caregivers,15 gastrointestinal oncologists; 53% metropolitan) revealed 4 themes and 6 candidate attributes: expected survival benefit of treatment, impact of physical side effects, effect on day-to-day functioning, route of administration, healthcare contact days, and planned length of the treatment course. Review of 45 published studies yielded no additional attributes.

Conclusions: This study identified six candidate attributes for a forthcoming DCE on time burden in advanced cancer care. These findings support growing efforts to quantify and address time toxicity in cancer treatment decision-making.

Purpose: The benefits and barriers of using patient-reported outcome measures (PROMs) in routine clinical practice have been examined extensively, but there has been limited in-depth exploration of the experience of PROMs by stakeholders and consumers. This study sought to understand the experiences of children with life-altering skin conditions, their caregivers and treating health professionals regarding the routine use of electronic PROMs.

Methods: Using interpretive description, data were gathered through qualitative interviews and researcher observations in two outpatient clinics within a major metropolitan paediatric hospital. In total, 48 interviews were conducted with children (aged 11-16 years) attending burn scar or vascular anomalies clinics, their caregivers (children of all ages) and treating health professionals.

Results: The therapeutic relationship was a central organising concept and crucial for providing person-centred care. Within the therapeutic relationship, ePROMs were used to prioritise where to start alongside a high-quality conversation. Study themes identified were shaping (or not shaping) care, taking a considered approach to the use of ePROMs, and aligning values and priorities with the everyday reality. ePROMs did not shape care or capture the priorities of all children and caregivers. A spectrum of sentiment from negative to positive was expressed by families regarding the routine use of ePROMs, differing to the predominantly positive sentiment by health professionals.

Conclusions: ePROMs should be used alongside high-quality conversations to assist in eliciting, understanding and evaluating what matters to children and caregivers but must be used within a therapeutic relationship.

Background and objective: Telephone cancer information and support services (CISS) deliver essential evidence-based resources for people living with cancer. This research aimed to describe how attributes and levels were developed for a future discrete choice experiment to elicit preferences for operational characteristics of a CISS, focusing on Cancer Council Victoria's service.

Methods: Using a mixed-methods approach guided by the ISPOR checklist for conjoint analysis in healthcare, initial attributes were developed using an artificial intelligence framework to analyse CISS calls (January 2018-December 2021), focus groups with people with cancer and carers using the CISS (July-August 2022), and a systematic literature review of qualitative studies. A four-stage descriptive process guided attribute and level development. An expert panel of researchers (n = 10), a CISS staff member, a person with lived experience of cancer and a consumer-only panel (n = 7) met monthly to prioritise, refine and finalise attributes by consensus.

Results: Call data analysis (people with cancer n = 7701; carers n = 5500), six focus groups (people with cancer n = 10; carers n = 11) and a systematic literature review of qualitative studies generated 14 candidate attributes. The expert panels selected seven final attributes, each with three levels: follow-up call, operating hours, additional technology, operator type, operator consistency, call length and service fee.

Conclusions: Transparent reporting of the discrete choice experiment design process is essential for credible interpretation. The four-stage approach enhanced the comprehensibility of the experiment, as multi-modal data ensured the selected attributes and levels accurately reflect CISS caller priorities, which may be applicable to other choice-based studies.

Background: Cardiac pacemakers are the only long-term treatment for symptomatic bradyarrhythmia. Despite technological advances, conventional pacemakers still face significant device and procedure-related complications. Recently, leadless pacing systems have been developed to address these issues.

Objective: Given the benefits and risks of both pacemaker devices, patient preference studies (PPS) are valuable to understand patients' priorities. This study reports qualitative insights that are fundamental to informing the development of attributes and levels of a subsequent quantitative PPS.

Methods: This qualitative phase of a PPS consisted of semi-structured interviews with pacemaker patients. To enhance preference validation, we applied a novel combined approach where patients both scored and ranked disease and treatment-related characteristics. Interviews were transcribed ad verbatim and analyzed using thematic framework analysis.

Results: The study included 18 Belgian pacemaker patients (median age = 81 years, 56% being male). Our combined approach identified a stable set of six consistently prioritized characteristics: improvements in (i) dyspnea, (ii) fatigue, (iii) exercise intolerance, alongside device features including (iv) a long battery lifetime, (v) limited risk of long-term complications, and (vi) integration of the latest technology. In contrast, characteristics such as the device location and physical appearance were considered less important compared with the life-saving functionality and quality of life improvements. Patients generally trusted their physicians and showed relatively little interest in deciding the device type.

Conclusions: Although patients were not actively concerned about their pacemaker treatment, they valued specific disease and treatment-related characteristics important to them. The patient-relevant characteristics identified in this study, derived directly from patients themselves, can inform device development and guide downstream evaluations to foster more informed, patient-centered decision-making that reflects patients' needs and preferences.

Introduction: The EQ Health and Wellbeing instrument (EQ-HWB) is a new generic instrument designed for evaluation across health, social care, community, and caregiver populations. It has 25-item (EQ-HWB) and 9-item (EQ-HWB-S) versions. Validation across target populations is needed. As the instrument remains in an 'experimental' phase, modifications are being considered, including to item wording, item order, and positive versus negative framing of three items. We aimed to investigate the content validity of the EQ-HWB for caregivers of children with chronic health conditions and explore the potential modifications.

Methods: In total, 21 caregivers from an Australian children's hospital sample completed semi-structured interviews, answering the 25 EQ-HWB items while 'thinking aloud', followed by interviewer probing. Interviews and coding focused on the COSMIN components of relevance, comprehension (understanding), and comprehensiveness.

Results: Most EQ-HWB items were relevant and well understood by participants, especially the psychosocial items (e.g., loneliness, anxiety). Some participants were confused by the wording in the seeing and hearing items, which were also less relevant in this population. The item 'feeling unsafe' was only relevant for a few participants, but most considered it important. Responses to potential modifications to items were mixed. Many participants were keen to keep the three positively worded items. Some participants suggested that finishing with positive items may mitigate negative feelings on completion.

Conclusions: EQ-HWB items have high relevance and are generally well understood by caregivers of children with health conditions. We recommend endorsing the modifications we tested for the EQ-HWB-S.

Objectives: The EuroQol Valuation Technology (EQ-VT) uses composite time trade-off (cTTO) with a 10-year lead-time to value health states worse-than-dead (WTD) ranging between - 1 and 0 (dead). While WTD responses are common in EQ-5D-5L studies, their drivers remain understudied in Asia. This mixed-methods study explored socio-demographic factors and reasoning behind WTD preferences in Singapore.

Methods: We recruited 500 adult Singaporeans using quota sampling. Each participant completed 20 cTTO tasks through computer-assisted interviews, followed by open- and closed-ended questions. Two-part regression models assessed both the likelihood and the extent of WTD ratings, and qualitative content analysis evaluated participants' reasoning for their health state valuations.

Results: Of the 500 participants (mean age 48.1 years; 52.6% had tertiary education), 76.8% identified as Chinese. Overall, 33.0% assigned WTD values, and 16.1% assigned '- 1' values. Age, education, marital status, interviewer and caregiving experience were associated with WTD ratings, though none remained significant in the multivariable analysis. Similar factors were linked to '- 1' values, with middle age being the only factor that remained significant in the multivariable analysis. Qualitative data showed that middle-aged participants often cited worries about imposing physical, mental, or financial burdens on their families.

Conclusions: Preferences for immediate death over living in poor health are common in Singapore, particularly among middle-aged respondents. Concerns about burdening family members appear to drive these preferences, reflecting broader cultural values. These insights may clarify the high frequency of '-1' values in EQ-5D valuation studies across Asia.

Background: This study uses clinical trial exit interviews to understand patients' experience of meaningful change with respect to patient-reported outcomes and in order to confirm the content validity of some items from selected trial patient-reported outcomes (Urticaria Control Test [UCT], Cold Urticaria Activity Score [ColdUAS], Patient Global Impression of Severity [PGIS], Patient Global Impression of Change [PGIC]). Clinical trial exit interviews are an effective way to generate qualitative meaningful change insights. However, there is lack of data to provide an understanding of meaningful improvement from the chronic inducible cold urticaria patient perspective.

Methods: We conducted a cross-sectional, double-blind, stand-alone exit interview study intended to recruit participants aged 12-80 years with cold urticaria across centers in Argentina, Canada, USA, and Germany participating in LIBERTY-CINDU CUrIADS (EudraCT: 2020-003756-33), which analyzed the efficacy of dupilumab versus placebo. Exit interviews were conducted within 2 weeks of the end of treatment.

Results: Participants (N = 15) reported symptoms including rash/redness, itch, hives, swelling, burning, and pain. The study established patient-defined thresholds for meaningful improvement: approximately two response options for UCT items, slightly fewer than two response options for ColdUAS items, and 1-2 category changes on PGIS/PGIC. Most participants reporting symptom improvement found it meaningful, with satisfaction being related to the degree of symptom relief. Notably, patients distinguished between a general symptom change and clinically meaningful change.

Conclusions: Exit interviews revealed key insights into patients' experiences with cold urticaria. Despite some limitations, including recruitment challenges and an all-female adult participant pool, the study provided valuable evidence for understanding meaningful improvement in cold urticaria treatment from the patient perspective.