Patient Preference And Adherence[JOURNAL]
Sun
200 papers
Determinants of Family Members' Willingness to Donate Organs in Intensive Care Units: A Cross-Sectional Study.
Al-Husinat L, Haddad R, Hailat MA … +9 more , Badr A, Khattab K, Al Sharie S, Al Modanat Z, Touqan MS, Balawi AR, Al Sharie H, Patroniti NA, Battaglini D
Patient Prefer Adherence · 2026 · PMID 42388660 · Full text
BACKGROUND: Despite the lifesaving potential of organ donation, a gap persists between organ demand and availability. Family members of intensive care unit (ICU) patients play a key role in consent for donation, yet fact...
BACKGROUND: Despite the lifesaving potential of organ donation, a gap persists between organ demand and availability. Family members of intensive care unit (ICU) patients play a key role in consent for donation, yet factors influencing their decisions are not fully understood. This study assessed the willingness of ICU patients' family members to donate organs and explored associated sociodemographic, clinical, and attitudinal factors. METHODS: In this cross-sectional single-centered tertiary care center in northern Jordan, 155 adult family members of ICU patients completed a structured questionnaire on demographics, patient variables, knowledge of organ donation and brain death, religious and cultural beliefs, trust in healthcare, and exposure to public campaigns. Baseline characteristics were summarized using descriptive statistics, and between-group comparisons were conducted using chi-square, Student's -test, or Mann-Whitney -test, as appropriate. Firth's penalized logistic regression was used to identify independent predictors of willingness due to small sample size and sparse cell counts. RESULTS: Of 155 participants, 44 (28.4%; 95% CI: 21.9-35.9%) were willing to donate. High trust in the healthcare system was the strongest independent predictor of willingness (OR 7.73; 95% CI: 3.21-19.93; p<0.001), followed by a favorable religious stance toward donation (OR 4.75; 95% CI: 1.99-12.23; p<0.001) and high familiarity with organ donation (OR 2.78; 95% CI: 1.12-6.87; p = 0.028). CONCLUSION: Willingness to donate organs among family members of ICU patients was primarily influenced by trust in the healthcare system, religious beliefs, and familiarity with organ donation. Context-specific interventions targeting these factors may help improve consent rates in similar settings.
Symptom Clusters and Quality of Life in Cervical Cancer Patients During the Perioperative Period: A Longitudinal Study.
Yang J, Zhang Y, Wu Y … +3 more , Wang Y, Chen L, Xu C
Patient Prefer Adherence · 2026 · PMID 42375713 · Full text
BACKGROUND: This longitudinal observational study aimed to investigate symptom clusters and quality of life (QOL) in patients with cervical cancer (CC) at multiple time points during the perioperative period. It also sou...
BACKGROUND: This longitudinal observational study aimed to investigate symptom clusters and quality of life (QOL) in patients with cervical cancer (CC) at multiple time points during the perioperative period. It also sought to analyze the correlation between symptom clusters and QOL, thereby providing evidence for dynamic symptom cluster management and strategies to improve patients' QOL. METHODS: From August to December 2025, we conducted a longitudinal observational study among 183 cervical cancer patients during the perioperative period. Participants were recruited from a gynecology center within a tertiary hospital in Northwestern China. Patients completed a demographic questionnaire, the Chinese version of the MD Anderson Symptom Inventory-perioperative symptom in patients with gynecologic cancer (MDASI-PeriOp-GYN), and the Functional Assessment of Cancer Therapy-General (FACT-G). Assessments were performed on the first day of admission (T1, preoperative baseline), 1-3 days after surgery (T2), and 7-10 days after surgery (T3). Symptom clusters were extracted using exploratory factor analysis (EFA). Longitudinal trends in symptom clusters were examined using latent class mixed models (LCMM). Trends in QOL were assessed with generalized estimating equations (GEE). Correlations between symptom clusters and QOL were analyzed using Spearman correlation analysis. RESULTS: Five symptom clusters were identified in cervical cancer patients during the perioperative period: pain-fatigue, psychological, hot flashes-neurological, digestive tract, and energy-deficit. The energy-deficit cluster was detected only at T2, whereas the digestive tract cluster was present at T2 and T3. LCMM analyses revealed that the pain-fatigue, psychological, and hot flashes-neurological clusters rose from T1 to T2 and subsequently declined after T2. Overall QOL followed a V-shaped trajectory: both domain and total scores declined significantly from T1 to T2, partially recovered at T3, but remained below preoperative levels. Moreover, the severity scores of all symptom clusters were negatively correlated with the total QOL score (p < 0.05). CONCLUSION: Patients undergoing cervical cancer surgery often experience various symptom clusters. High symptom severity is typically associated with lower QOL. Therefore, clinical staff should prioritize the dynamic management of symptom clusters in perioperative cervical cancer patients. This strategy can help reduce symptom burden and enhance patients' QOL.
Development and Validation of the Behavioral Determinants of Deprescribing Questionnaire (BDDQ).
Alves Jorge S, Van den Broucke S, De Saint-Hubert M … +1 more , Spinewine A
Patient Prefer Adherence · 2026 · PMID 42375712 · Full text
PURPOSE: Deprescribing is a strategy to optimize medication use. While a patient's willingness to engage in deprescribing depends on several factors, the literature on the subject relies almost exclusively on questionnai...
PURPOSE: Deprescribing is a strategy to optimize medication use. While a patient's willingness to engage in deprescribing depends on several factors, the literature on the subject relies almost exclusively on questionnaires that only measure patients' attitudes towards deprescribing. This study used health behavior theories (HBTs) to develop a questionnaire that measures a larger range of psychological determinants of patients' deprescribing participation. PATIENT AND METHODS: A draft self-report questionnaire was developed based on a recent systematic review. It measures 11 dimensions representing the main HBT-derived determinants of patients' participation in deprescribing, as well as previous experience with deprescribing, current behavior, and intention to participate in deprescribing. Face validity was assessed via small group discussions involving 10 healthcare professionals and 12 older people. Construct validity was assessed in a sample of 103 participants, using exploratory factor analysis (EFA). Internal consistency was assessed via Cronbach's alpha and Omega coefficient. RESULTS: The EFA confirmed 11 dimensions explaining 67,15% of the total variance but revealed poor factor loadings for some items and low Cronbach alpha values (<.50) for three factors. Removal of items and factors resulted in a final questionnaire of 25 items measuring 8 conceptually relevant dimensions, with internal consistencies ranging between.55 and.77: perceived necessity of medication, perceived risks of medication, perceived norms regarding medication use, perceived effects of deprescribing, perceived difficulty of deprescribing, perceived social support, healthcare system support, and medication literacy. CONCLUSION: A conceptually based and psychometrically validated questionnaire was developed measuring the main behavioral determinants of older patients' participation in deprescribing, allowing a comprehensive investigation of intentions and behavior.
Facilitating and Hindering Factors in Discharge Preparation During the Hospital-to-Home Transition Period for Newly Diagnosed Tuberculosis Patients: A Qualitative Study.
Yu Q, Hu Y, Yao R … +7 more , Zhang T, Huang L, Li Y, Wan B, Xie F, Shao X, Yang X
Patient Prefer Adherence · 2026 · PMID 42371594 · Full text
OBJECTIVE: The aim of this study is to identify the barriers and facilitating factors affecting discharge preparation during the hospital-to-home transition period for treatment-naïve tuberculosis patients, thereby provi...
OBJECTIVE: The aim of this study is to identify the barriers and facilitating factors affecting discharge preparation during the hospital-to-home transition period for treatment-naïve tuberculosis patients, thereby providing a basis for the development of personalised interventions. METHODS: This study employed a qualitative descriptive research design. Using purposive and maximum diversity sampling strategies, 15 treatment-naïve tuberculosis patients were selected from an infectious diseases hospital in western China to participate in semi-structured in-depth interviews. The interview data was then organised, analysed and distilled using the Colaizzi 7-step analysis method. RESULTS: The discharge experience during the hospital-to-home transition period for newly diagnosed TB patients comprised two themes and seven subthemes. These included facilitating factors for discharge preparedness diverse home-based treatment supervision methods, plentiful digital healthcare resources, strong desire to return to work, and robust social support and impeding factors for discharge preparednessLack of disease knowledge, Unmet needs regarding patient self-management and a heavy psychological burden. CONCLUSION: This study demonstrates that the discharge preparedness of newly diagnosed TB patients during the hospital-to-home transition is influenced by multiple factors. Healthcare professionals should conduct precise assessments of patients' discharge preparedness challenges, utilizing these factors to deliver targeted discharge preparation training.
Exploring Information Needs and Perspectives on a Patient Decision Aid for Biologic Therapy: A Qualitative Interview Study Among Individuals with Rheumatoid Arthritis.
Rai SK, McCormick N, Yokose C … +3 more , De Vera MA, Li LC, Choi HK
Patient Prefer Adherence · 2026 · PMID 42371593 · Full text
PURPOSE: Significant advances in therapeutic and management options have been made for rheumatoid arthritis (RA), including the development of biologics. However, some patients have expressed hesitancy with respect to th...
PURPOSE: Significant advances in therapeutic and management options have been made for rheumatoid arthritis (RA), including the development of biologics. However, some patients have expressed hesitancy with respect to their use. We aimed to (1) investigate RA patient perspectives on a biologic patient decision aid; and (2) explore how this decision aid addressed their broader information needs in a US healthcare context. PATIENTS AND METHODS: We conducted in-depth telephone interviews with RA patients who were considering either initiating a biologic for the first time or switching to another biologic. Participants were recruited from across the US by a research coordinator based at Massachusetts General Hospital. Participants were first invited to access an existing decision aid developed to support individuals with RA who are considering a biologic. We conducted an iterative content analysis guided by the grounded theory approach. RESULTS: We interviewed 14 patients with RA, among whom five were biologic-naive. We identified four major themes: 1) (including connecting with others with a chronic disease); 2) (including access to patient stories); 3) (including content preferences and accessibility); and 4) (including empowerment to engage in shared decision-making). CONCLUSION: These four themes highlight key factors to consider for the design/refinement and implementation of patient decision aids in the US (including key information needs and the utility of patient stories) to appropriately meet the needs of patients who are considering a biologic.
The Need to Feel Safe: Older Adults' and Family Caregivers' Perspectives on Safe and Person-Centered Medication Management in Home Nursing Care.
Olsen US, Jakobsen E, Solberg W … +5 more , Stjern K, Arnevik O, Solum Myren GE, Sletvold H, Devik SA
Patient Prefer Adherence · 2026 · PMID 42368682 · Full text
PURPOSE: To explore the experiences and preferences of older adults living at home and their family caregivers regarding medication use and medication management support through home care. PATIENTS AND METHODS: Individua...
PURPOSE: To explore the experiences and preferences of older adults living at home and their family caregivers regarding medication use and medication management support through home care. PATIENTS AND METHODS: Individual semi-structured interviews were conducted with 11 older adults and six family caregivers in Norway during the spring of 2024. The study employed a qualitative design involving collaboration with co-researchers. Data were analyzed using qualitative content analysis. RESULTS: The analysis yielded three main categories-practical aspects of medication management, knowledge about the need for and effects of medications, and responsibility and collaboration-each comprising several subcategories. An overarching theme, between feeling safe and being safe: balancing autonomy and support in medication management at home, captured the balance between feeling safe as an inner sense of being cared for and being safe as external protection from harm, as well as the balance between autonomy and support in medication management. While routines and procedures in home nursing services are intended to promote safety, both older adults and family caregivers described a more passive role in medication management than they desired, often accepting what was provided while withholding questions and preferences for greater individualization. These findings indicate that achieving both feeling safe and being safe requires person-centered approaches that foster involvement, knowledge, and control. CONCLUSION: Person-centered medication management requires that the preferences, needs, and concerns of older adults and family caregivers are made visible and actively addressed. Strengthening communication and shared understanding between services and users is essential for achieving collaborative practice that promotes safety, autonomy, and support.
Patient Experiences of Intravitreal Anti-Vascular Endothelial Growth Factor Injections for Age-Related Macular Degeneration: A Meta-Synthesis of Qualitative Studies.
Liu D, Bi H, Sun Y … +2 more , Gao Z, Lu P
Patient Prefer Adherence · 2026 · PMID 42359432 · Full text
AIM: To synthesize evidence from qualitative studies on patients receiving intravitreal anti-vascular endothelial growth factor injections for age-related macular degeneration to explore their treatment burdens and life...
AIM: To synthesize evidence from qualitative studies on patients receiving intravitreal anti-vascular endothelial growth factor injections for age-related macular degeneration to explore their treatment burdens and life experiences. METHODS: Five databases (PubMed, Web of Science, Embase, Cochrane Library, and CINAHL) were searched on 20 May 2025, with supplementation through hand-searching. The search was restricted to qualitative or mixed-methods studies published in English. The included studies were evaluated and synthesized by two independent reviewers using the Joanna Briggs Institute (JBI) critical appraisal tools and the JBI aggregative integration method. RESULTS: Thirteen studies (2010-2023) from 11 countries were summarized into four themes: barriers to treatment and sources of anxiety, coping strategies and adaptation mechanisms, drivers of treatment adherence, and the impact of doctor-patient engagement. CONCLUSION: Patients with age-related macular degeneration face significant physical, emotional, and logistical challenges during anti-vascular endothelial growth factor therapy. A series of measures can be integrated into the treatment process to improve patient adherence, including psychological support, structured patient education, and optimized treatment pathways. REGISTRATION: PROSPERO CRD420251059151.
eHealth Literacy and Quality of Life in Patients: A Narrative Review of Mediating Effecting.
Zhao W, Li X
Patient Prefer Adherence · 2026 · PMID 42344219 · Full text
BACKGROUND: Guided by the World Health Organization's Global Strategy on Digital Health 2020-2025, and with the widespread adoption of digital health concepts globally, public health management is undergoing a profound t...
BACKGROUND: Guided by the World Health Organization's Global Strategy on Digital Health 2020-2025, and with the widespread adoption of digital health concepts globally, public health management is undergoing a profound transformation toward online and intelligent models. In this context, leveraging digital intelligence technologies to empower full life-cycle health management-and thereby tangibly improve people's quality of life-has become a core objective in the field of international health promotion. Meanwhile, through a review of the literature, we found that eHealth literacy can further influence quality of life through mediating factors. Therefore, this review summarizes specific mediating variables and explores their underlying mechanisms. METHODS: Based on the inclusion and exclusion criteria, we conducted a literature search in the CNKI, PubMed and Web of science databases using keywords such as "eHealth literacy", "quality of life", and "mediating effect". We employed a narrative review approach to summarize and synthesize the literature on mediating variables in the relationship between eHealth literacy and quality of life. RESULTS: A total of 7 studies were included after the screening process. All 7 articles included in the review were cross-sectional studies. Social support, self-efficacy, self-management ability, life satisfaction, and fear of disease progression were found to play significant mediating roles between eHealth literacy and quality of life. CONCLUSION: Existing evidence indicates that the relationship between eHealth literacy and quality of life is influenced by mediating factors. Future eHealth interventions should target these mediating factors to effectively improve patients' quality of life.
Supportive Care Needs and Patient Preferences Across the Treatment Journey Among Women with Stage III-IV Breast Cancer in Urban and Rural Tasikmalaya, Indonesia: A Qualitative Study.
Fauzan NH, Pahria T, Nursiswati N … +1 more , Juniar R
Patient Prefer Adherence · 2026 · PMID 42344218 · Full text
PURPOSE: To explore supportive care needs and patient preferences among women with stage III-IV breast cancer across the entire treatment journey, specifically examining how the urban-rural context shapes these experienc...
PURPOSE: To explore supportive care needs and patient preferences among women with stage III-IV breast cancer across the entire treatment journey, specifically examining how the urban-rural context shapes these experiences in Tasikmalaya, Indonesia. PATIENTS AND METHODS: This qualitative study recruited 10 women with stage III-IV breast cancer receiving routine care (chemotherapy, hormonal therapy, and/or follow-up) at Jasa Kartini Hospital, Tasikmalaya. Participants were purposively sampled. Data were collected through semi-structured in-depth interviews (audio-recorded) and field notes. Reflexive thematic analysis was conducted following Braun and Clarke. Reporting was guided by the COREQ checklist. RESULTS: Participants experienced treatment delays ranging from 1 to 6 years. Five key findings regarding supportive care needs and preferences were identified: (1) a critical need for credible education to address chemotherapy fears and health-system confusion; (2) a strong preference for psychosocial support through family accompaniment and peer-survivor networks; (3) a reliance on spiritual support (e.g. prayer and dhikr) for hope and acceptance; (4) urgent practical and non-medical financial needs (transport and logistics) that persist despite national insurance coverage; and (5) a dynamic shift in psychological experiences, moving from early distress toward death preparedness and acceptance. CONCLUSION: Supportive care needs among women with advanced breast cancer are dynamic and significantly moderated by the urban-rural divide, which creates distinct logistical and non-medical economic hurdles even under universal health coverage. Oncology nursing practice should transition toward phase-sensitive care models that prioritize patient navigation to address "hidden" financial burdens and integrate culturally sensitive spiritual support to enhance patient resilience and treatment continuity throughout the complex illness trajectory.
Knowledge, Attitudes, and Practices Regarding Stroke Among Young Stroke Patients in China: A Cross-Sectional Survey.
Li G, Wang Z, Wang T … +4 more , Cui Y, Li H, Wang W, Li J
Patient Prefer Adherence · 2026 · PMID 42339051 · Full text
BACKGROUND: Stroke remains a leading cause of death and disability, with rising incidence in young adults. This study evaluates the Knowledge, Attitudes, and Practices (KAP) regarding stroke among young stroke patients a...
BACKGROUND: Stroke remains a leading cause of death and disability, with rising incidence in young adults. This study evaluates the Knowledge, Attitudes, and Practices (KAP) regarding stroke among young stroke patients aged 18-45 years. METHODS: A cross-sectional online survey was conducted from January 15 to June 5, 2025, in Shanxi Province, China. Data from 445 young stroke patients were analyzed. Structural equation modeling (SEM) was employed to explore the relationships among KAP domains. RESULTS: The average KAP scores were 23.69±8.48, 43.71±4.84, and 40.32±5.68, respectively. SEM analysis revealed that knowledge directly influenced both attitudes (β=0.519, P=0.011) and practices (β=0.494, P=0.005). Furthermore, knowledge had a significant indirect effect on practices through attitudes (β=0.218, P=0.006). SEM analysis revealed that knowledge directly influenced both attitudes and practices, while attitudes partially mediated the relationship between knowledge and practice. CONCLUSION: Young stroke patients demonstrated positive attitudes and moderate practices but had insufficient knowledge. This knowledge-practice gap underscores the urgent need for targeted educational interventions, such as digital health tools and community workshops, to improve secondary stroke prevention.
Sleep Disturbance, Treatment-Related Adverse Events, and Psychological Distress in Breast Cancer Patients: A Prospective Cohort Study.
Zhao F, Li Y, Zhou Y … +9 more , Fu E, Zhu S, Yu L, Xu H, Li Q, Li Q, Zhang P, Wang J, Mo H
Patient Prefer Adherence · 2026 · PMID 42333247 · Full text
BACKGROUND: Studies on the treatment-related adverse events have mostly overlooked sleep quality and psychological distress in patients with cancer. The aim of this study was to analyze the relationship between sleep dis...
BACKGROUND: Studies on the treatment-related adverse events have mostly overlooked sleep quality and psychological distress in patients with cancer. The aim of this study was to analyze the relationship between sleep disturbance, treatment-related adverse events, and psychological distress in Chinese patients with breast cancer. METHODS: This was a prospective cohort study of 300 female patients diagnosed with breast cancer, who were recruited from two medical centers in China. Sleep disturbances and psychological distress were assessed before and after every treatment cycle using the Pittsburgh Sleep Quality Index and the Symptom Checklist-90 questionnaire. Treatment-related adverse events were assessed using a validated 26‑item scale after each of 6 chemotherapy cycles. Spearman's rank correlation was used for bivariate analyses and multivariable linear regression was used to test independent associations. False Discovery Rate correction was applied for multiple comparisons. RESULTS: The incidence of most treatment-related adverse events was significantly higher in the baseline sleep disorder group than in the normal sleep group (all P values <0.05). Psychological distress at baseline was correlated with the total treatment-related adverse events score (rs=0.54, P<0.001). Multivariate analysis showed that psychological distress was independently associated with the occurrence of treatment-related adverse events (β=0.19, P<0.001). In addition, the pre-treatment total psychological distress score in the baseline sleep disorder group was significantly higher than that in the normal sleep group (P=0.001). Furthermore, the severity of treatment-related adverse events and baseline sleep quality were associated with psychological distress (all P values <0.05). CONCLUSION: Poor baseline sleep quality is correlated with increased occurrence and severity of treatment-related adverse events. In addition, baseline psychological distress is correlated with the occurrence of treatment-related adverse events. Both baseline sleep quality and the severity of treatment-related adverse events were associated with the psychological distress of patients after treatment for breast cancer.
Factors Associated with Non-Adherence to Blood Glucose Testing Among Non-Hispanic Black and Hispanic Men with a History of Prediabetes in the United States.
Bose A, Prochnow T, Bergeron CD … +6 more , Park JH, Johannes BL, Sherman LD, Patterson MS, Merianos AL, Smith ML
Patient Prefer Adherence · 2026 · PMID 42333246 · Full text
INTRODUCTION: Rates of prediabetes are rising in the United States, especially within communities of color. Without adopting self-care behaviors and adhering to routine screenings, prediabetes is likely to progress to ty...
INTRODUCTION: Rates of prediabetes are rising in the United States, especially within communities of color. Without adopting self-care behaviors and adhering to routine screenings, prediabetes is likely to progress to type 2 diabetes. This study examines factors associated with non-adherence to recommended blood glucose testing among non-Hispanic Black and Hispanic men ages ≥40 years with a history of prediabetes. METHODS: Using an internet-delivered survey, data were collected from 769 Black (56.7%) and Hispanic (43.3%) men with a history of prediabetes. Chi-square tests and independent sample-tests were to identify differences across study variables by race/ethnicity and blood glucose testing adherence. A logistic regression model with backward stepwise entry was fitted to assess factors associated with blood glucose testing non-adherence, adjusted for sociodemographic factors, co-morbidities, healthcare interactions, social support, and lifestyle behaviors. RESULTS: Approximately 11% of participants did not receive a blood glucose test in the past 12 months, and 60.9% self-reported progression from prediabetes to diabetes. Men who self-reported progressing from prediabetes to diabetes were less likely to be non-adherent to blood glucose testing recommendations (Odds Ratio [OR]=0.51, P=0.006). Each additional year of age was associated with lower odds of being non-adherent to blood glucose testing (OR=0.97, P=0.018). On average, men who engaged more with healthcare providers during visits had lower odds of being non-adherent to blood glucose testing (OR=0.87, P<0.001). Men who reported reasons for medication non-adherence (OR=1.68, P=0.043) and used tobacco products (OR=2.39, P<0.001) were more likely to report blood glucose testing non-adherence. CONCLUSION: Findings suggest that disease progression, greater engagement with healthcare providers, and improved healthy behaviors may be associated with adherence to blood glucose testing among Black and Hispanic men with a history of prediabetes. Culturally tailored interventions and strategies are needed to improve adherence among male these sub-groups.
Dynamic Association Between Health Literacy and Fear of Progression Among Nasopharyngeal Cancer Survivors During the Post‑treatment Survivorship Period: A Multicenter Exploratory Longitudinal Study.
Lin QM, Zhang BJ, Qiu XM … +3 more , Chen AY, Zhang QY, Lin BH
Patient Prefer Adherence · 2026 · PMID 42317608 · Full text
OBJECTIVE: To explore the dynamic association and predictive effect between health literacy and Fear of Progression (FoP) among nasopharyngeal carcinoma (NPC) patients during post‑treatment survivorship period. METHODS:...
OBJECTIVE: To explore the dynamic association and predictive effect between health literacy and Fear of Progression (FoP) among nasopharyngeal carcinoma (NPC) patients during post‑treatment survivorship period. METHODS: A multicenter exploratory longitudinal study design was adopted. A total of 94 newly diagnosed patients with stage III and above non-metastatic nasopharyngeal carcinoma were enrolled from the Department of Radiotherapy between August 2023 and December 2024.Three follow-up time points were set at 3 months (T1), 6 months (T2), and 12 months (T3) after treatment completion, at which patients' health literacy and Fear of Progression (FoP) levels were assessed. The correlation between health literacy and FoP, as well as the predictive effect of health literacy on FoP, were further analyzed. RESULTS: The mean age of the 94 NPC patients was 48.6 ± 12.3 years. Health literacy remained moderate across the three time points, while FoP was consistently high. Health literacy was significantly negatively correlated with FoP at all time points, with stronger correlations in the resource utilization and threat perception dimensions. The lagged linear model showed health literacy had a significant unadjusted negative predictive association on subsequent FoP. However, after controlling for prior FoP's inertia effect, health literacy's independent predictive effect disappeared, while FoP's inertia remained extremely strong. Dimensional decomposition revealed only health literacy's resource utilization dimension had a significant protective effect on FoP, with the threat perception dimension marginally significant. Sensitivity analysis confirmed findings' robustness. CONCLUSION: NPC patients' FoP showed high temporal stability during the post‑treatment survivorship period; single-modality health literacy interventions failed to alter this chronic psychological state short-term. Clinically, early combined interventions of health literacy enhancement and psychological cognitive restructuring are recommended. Prioritize improving patients' medical resource utilization capacity, with a multidisciplinary support system to provide sustained health and psychological support during family reintegration.
Tailored Personas for Lung Transplant Recipients' Return-to-Work Experiences: A Secondary Analysis of Qualitative Data.
Huang K, Wang S, Cai L … +3 more , Chen Z, Cao X, Zhou H
Patient Prefer Adherence · 2026 · PMID 42311868 · Full text
BACKGROUND: For lung transplant recipients, going back to work is a crucial sign of improved quality of life and post-operative social rehabilitation. However, the re-employment rate for this group is typically poor. Sig...
BACKGROUND: For lung transplant recipients, going back to work is a crucial sign of improved quality of life and post-operative social rehabilitation. However, the re-employment rate for this group is typically poor. Significant individual variances result from the process, which is heavily impacted by intricate physiological, psychological, and social aspects. Support measures frequently lack specificity since there is currently a lack of thorough understanding of the distinct needs and experiences of various patient groups. OBJECTIVE: This study examines the real-life experiences, challenges, and coping mechanisms of lung transplant recipients returning to work, and develops user personas for workforce reintegration to uncover cohort diversity and inform targeted vocational rehabilitation interventions. METHODS: We conducted a secondary qualitative analysis of in-depth interviews with 38 lung transplant recipients from a tertiary hospital in Jiangsu Province. Using Graneheim and Lundman's content analysis and persona development, we identified and visualised distinct return-to-work profiles based on shared characteristics and behaviours. RESULTS: Four return-to-work profiles were established: (1) Rapid Return Type - Patients who resumed work, recovered well, and actively reintegrated into society; (2) Meandering Return Type - Patients who returned to work but required ongoing balancing of health and occupational demands; (3) Life-Centred Type - Patients who voluntarily relinquished employment, prioritising health and recuperation; (4) Conflicted and Hesitant Type - Patients who have not returned to work but harbour a desire to do so, hindered by physical, psychological, and social barriers. CONCLUSION: Lung transplant recipients' return to work experiences are highly varied and impacted by a variety of circumstances, including social, psychological, physiological, and economic aspects. Finding these profiles helps policymakers, rehabilitation teams, and clinicians comprehend the internal differences in this patient population. This knowledge makes it easier to provide individualized, categorized, and stratified vocational rehabilitation assistance, which fosters long-term social and professional integration.
Beyond the Prescription: Hydroxycarbamide Utilization and Adherence Among Persons Living with Sickle Cell Disease in Rural Ghana.
Mensah KB, Osei-Owusu V, Boamah Mensah AB … +3 more , Boachie-Ansah P, Appiah-Num Safo AA, Padayachee N
Patient Prefer Adherence · 2026 · PMID 42311867 · Full text
PURPOSE: To assess the utilization and adherence to hydroxycarbamide therapy among sickle cell disease (SCD) patients in a rural Ghanaian setting, and predictors of adherence. PATIENTS AND METHODS: We conducted a cross-s...
PURPOSE: To assess the utilization and adherence to hydroxycarbamide therapy among sickle cell disease (SCD) patients in a rural Ghanaian setting, and predictors of adherence. PATIENTS AND METHODS: We conducted a cross-sectional study among 100 SCD patients receiving care at a rural health facility in Ghana. Data were collected using a structured questionnaire administered to adult patients and caregivers of paediatric patients. Descriptive statistics and multivariable logistic regression were used to assess hydroxyurea utilisation, adherence, and associated factors. RESULTS: The study population was predominantly paediatric, with caregivers completing questionnaires for most participants. More than half of the respondents (56%) had use hydroxyurea for over 2 years. While 80% reported always taking the drug, the majority admitted to missing at least one dose in the preceding month. The most reported barriers were forgetfulness (50%) and financial constraints (44.6%). Although gender and educational level were associated with adherence in unadjusted analyses, these factors were not independent predictors in the multivariable logistic regression model. CONCLUSION: Hydroxyurea utilization in this rural setting is encouraging and reflects the positive impact of national policies such as the "Ahodwo Program". However, adherence challenges persist. This is primarily driven by behavioral and financial barriers than demographic factors. Optimising hydroxyurea use will require targeted interventions, including patient and caregiver education and financial risk protection mechanisms that build on the existing national programs. From a policy perspective, these findings support strengthening caregiver-centred adherence interventions. Future studies should prioritise age-stratified, longitudinal designs to better characterise adherence patterns in adults and children.
Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia: A Multinational Discrete Choice Experiment.
Nier S, Hussain H, Hitch J … +3 more , Chowdhury S, Skedgel C, Mott DJ
Patient Prefer Adherence · 2026 · PMID 42311866 · Full text
PURPOSE: Acute leukemia (AL) is an aggressive cancer of white blood cells that progresses rapidly and requires intensive treatment. While first-line therapies can induce remission, this is not the case for all patients (...
PURPOSE: Acute leukemia (AL) is an aggressive cancer of white blood cells that progresses rapidly and requires intensive treatment. While first-line therapies can induce remission, this is not the case for all patients (refractory disease), and many patients experience a relapse. In these situations, treatment decisions become complex due to trade-offs between efficacy, toxicity and quality of life. Despite recognition of the importance of patient preferences in treatment decision-making, limited evidence exists on how individuals with AL value different treatment features. PATIENTS AND METHODS: A web-based discrete choice experiment (DCE) was conducted across the UK, USA, France, Germany and Italy to quantify treatment preferences among adults with AL. Attributes were identified through literature review, formative qualitative research and patient input. Each participant completed 12 choice tasks comparing hypothetical treatment profiles varying by chance of response, duration of response, quality of life during treatment and response and mode of administration. Data were analyzed using mixed logit and latent class models to estimate conditional relative attribute importance (RAI) scores, explore preference heterogeneity and assess trade-offs. RESULTS: A total of 267 respondents completed the study. Across the full sample, the chance of response was the most influential treatment attribute (RAI=62%), followed by quality of life during response (14%), duration of response (9%), quality of life during treatment (8%) and mode of administration (7%). Three latent preference classes were identified: efficacy-focused (47%), convenience- and efficacy-focused (21%) and balanced decision-makers (32%). Respondents in the USA were more likely to belong to the convenience- and efficacy-focused group, suggesting that contextual factors influence preferences. CONCLUSION: Patients with AL largely prioritize treatment efficacy but also value quality of life and convenience, indicating that treatment decisions are multifaceted and context dependent. Incorporating patient preferences into clinical development and health technology assessment can promote more person-centered approaches to care.
Experiences of Living with Gynecological Cancer-Related Lymphedema Among Patients: A Systematic Review and Thematic Synthesis of Qualitative Studies.
Feng X, Gong J, Ma S
Patient Prefer Adherence · 2026 · PMID 42305183 · Full text
PURPOSE: Due to the gap in the existing literature regarding the absence of meta-synthesis of qualitative studies in the field of gynecological cancer-related lymphedema, and the limited attention to patient's experience...
PURPOSE: Due to the gap in the existing literature regarding the absence of meta-synthesis of qualitative studies in the field of gynecological cancer-related lymphedema, and the limited attention to patient's experiences, the purpose of this study is to synthesize the qualitative experiences of the subjective real experience of gynecological cancer-related lymphedema patients to provide a reference to formulate clinically targeted strategies for management. PATIENTS AND METHODS: Journal articles were identified by conducting electronic searches in PubMed, CINAHL, PsycINFO, Web of Science, Cochrane Library, Embase, Chinese National Knowledge Infrastructure, Sino Med, Wanfang, VIP databases were searched to identify qualitative studies on real patient experiences of gynecological cancer-related lymphedema from inception to February 2026. The Integrating Methods were applied to synthesize and integrate the results. The methodological quality of included studies was assessed using the JBI Critical Appraisal Checklist for Qualitative Research tool. The quality of the synthesis results was assessed using Con Qual. RESULTS: A total of 12 studies involving 141 patients were included. Three themes and 10 subthemes were synthesized: Three synthesized findings were 1) Impacts of gynecological cancer-related lymphedema on patients, 2) Cognition and adaptation of patients with gynecological cancer-related lymphedema, and 3) Multifaceted support needs of patients with gynecological cancer-related lymphedema. The Con Qual rating of the synthesis results is moderate. CONCLUSION: Patients with gynecological cancer-related lymphedema bear dual physical and psychological burdens. Disease cognition and coping strategies exhibit significant heterogeneity across different patients. It is imperative to provide patients with comprehensive support. Future research should broaden geographical coverage and enhance the evidence system to improve the quality of life for patients with gynecological cancer-related lymphedema and to formulate more targeted clinical management strategies.
Gender Difference in Satisfaction with Nursing Home Services Among Disabled Elderly Inpatients Across Disease Categories: A Multi-Center Study.
Zhang J, Yu C, Han B … +3 more , Li A, Huang X, Wang Y
Patient Prefer Adherence · 2026 · PMID 42305182 · Full text
OBJECTIVE: This study aimed to investigate the independent effect of gender on patient satisfaction among disabled inpatients across various disease types and to identify the key factors influencing these satisfaction le...
OBJECTIVE: This study aimed to investigate the independent effect of gender on patient satisfaction among disabled inpatients across various disease types and to identify the key factors influencing these satisfaction levels. METHODS: A cross-sectional, multi-center study recruited 1,157 disabled inpatients from seven institutions. The measurements encompassed general characteristics (age, gender, height, weight, disease diagnosis, and functional impairment). Data were analyzed using multivariable logistic regression to identify factors associated with patient satisfaction, supplemented by stratified subgroup analyses across disease categories. Receiver Operating Characteristic (ROC) curves were used to evaluate the predictive value of gender-specific factors. RESULTS: This study investigated gender differences in satisfaction among disabled elderly inpatients with prevalent comorbidities, including neurologic (75.8%) and cardiovascular (75.3%) diseases. Multivariate logistic regression revealed that males were significantly less likely to report satisfaction compared to females (OR = 0.465, = 0.018), a trend consistent across subgroup analyses for cardiovascular diseases (OR = 0.452, = 0.042) and chronic geriatric diseases (OR = 0.389, = 0.047). Neurologic disease subgroups showed marginal significance (OR = 0.536, = 0.083). CONCLUSION: Gender is a significant determinant of satisfaction among disabled elderly residents, with males reporting lower satisfaction, particularly in cardiovascular and chronic geriatric departments. These findings underscore the necessity of transitioning from a "one-size-fits-all" model to gender-sensitive care. Implementing gender-tailored intervention strategies is essential to address psychosocial disparities and optimize patient-centered outcomes in long-term disability care.
Determinants of Orthodontist Selection Among Adolescents: The Role of Digital Information Sources.
Üstdal Güney A, Türkoğlu BD, Kadioglu FG
Patient Prefer Adherence · 2026 · PMID 42293172 · Full text
PURPOSE: Adolescents are among the primary recipients of orthodontic treatment and are active users of digital platforms. While digital environments are increasingly associated with healthcare-related perceptions, orthod...
PURPOSE: Adolescents are among the primary recipients of orthodontic treatment and are active users of digital platforms. While digital environments are increasingly associated with healthcare-related perceptions, orthodontist selection is a multifactorial process influenced by various clinical, professional, and informational factors. This study aimed to evaluate adolescents' orthodontist selection criteria and to examine the role of digital information sources within this decision-making process. PATIENTS AND METHODS: This cross-sectional study included 180 adolescent patients (aged 11-18 years) who attended an initial orthodontic consultation at a dentistry faculty. Data were collected using a self-administered 63-item questionnaire assessing sociodemographic characteristics, digital information-seeking behaviors, and orthodontist selection criteria. Of these, 45 items constituted the multidimensional Digital Determinants of Orthodontist Selection Instrument (DDOSI), which was developed to evaluate factors influencing orthodontist selection and demonstrated high internal consistency (Cronbach's α > 0.930). Statistical analyses included chi-square tests, exploratory factor analysis, and group comparisons using appropriate parametric and nonparametric tests. RESULTS: Participants reported an average daily use of digital platforms of 3 ± 1.01 hours. Google (41.1%) was the most frequently used information source, whereas Instagram (28.3%) was the most commonly used social media platform. A majority of adolescents reported searching online for health-related information (75.6%) and aesthetic procedures (57.2%). The most influential criterion in orthodontist selection was clinic cleanliness (22.7%), followed by the orthodontist's professional confidence/enthusiasm (9.3%) and the use of up-to-date technological equipment (7.6%). Significant differences were observed according to age, gender, socioeconomic status, and parental education level (p < 0.05). CONCLUSION: Adolescents' orthodontist selection is primarily driven by clinical and professional factors. Digital information sources play a complementary role by supporting information acquisition and shaping perceptions rather than acting as primary determinants in decision-making.
Integrating Positive Outcomes into Healthcare: Validation of the Pleasurable Affect Levels Scale.
Long P, Ritschl V, Stamm T
Patient Prefer Adherence · 2026 · PMID 42293171 · Full text
BACKGROUND: As value-based healthcare (VBHC) continues to reshape global health systems, there is growing recognition that patient-reported outcomes should track not only disease but also positive factors like wellness....
BACKGROUND: As value-based healthcare (VBHC) continues to reshape global health systems, there is growing recognition that patient-reported outcomes should track not only disease but also positive factors like wellness. Despite the centrality of pleasure to motivation, resilience, and quality of life, no instruments directly assess this construct. To address this gap, the present study developed and preliminarily validated the Pleasurable Affect Levels Scale (PALS), a novel, generic patient-reported outcome measure (PROM) designed to quantify the experience of pleasure relevant for clinical decision making. METHODS: A scoping literature review was conducted to identify validated scales measuring pleasure or related constructs and inform the novel scale development. Four iterative rounds of pilot testing were carried out. Item generation and refinement were guided by patient feedback, expert consensus, and psychometric testing. Analyses included exploratory factor analysis (EFA) to examine construct validity, item reduction based on cross-loadings and redundancy, and reliability assessment via Cronbach's alpha. RESULTS: The literature review identified three validated scales (DARS, SAAS, SHAPS), each focused on anhedonia rather than pleasure itself. Final refinement across pilots yielded a final 23-item scale. Factor analysis supported a four-factor structure-functional maintenance, sensory input, social interaction, and leisure-with strong sampling adequacy (KMO = 0.941), significant Bartlett's test (p < 0.05), and excellent internal consistency (α = 0.942). CONCLUSION: Preliminary findings indicate strong psychometric performance. The assessment of pleasure could have important implications for clinical practice, research, and health policy by enabling clinicians to quantify and track patient health beyond symptom reduction, support treatment decisions, and potentially improve adherence. By incorporating pleasure into patient care and dialogue, it may promote a more comprehensive approach to healthcare, although these applications require validation through real-world clinical implementation and testing.
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