Patient Experience Research Articles

Shared decision making in primary malignant bone tumour surgery around the knee in children and young adults: protocol for a prospective study

BackgroundChildren and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life-changing decision. A previous study showed that this population wants to be involved more in the decision-making process and that more involvement leads to less decisional stress and regret. Therefore, a well-designed and standardized decision-making process based on the principles of shared decision-making needs to be designed, implemented, and evaluated.MethodsWe developed a shared decision-making (SDM) model for this patient population, including an online decision aid (DA). This model has been implemented in the standard care of patients with a primary malignant bone tumour around the knee. Following implementation, we will analyse its effect on the decision-making process and the impact on patient experiences using questionnaires and interviews. Moreover, potential areas for improvement will be identified.DiscussionGiven the importance of involving patients and parents in surgical decision-making, particularly in life-changing surgery such as malignant bone tumour surgery, and given the lack of SDM models applicable for this purpose, we want to share our model with the international community, including our study protocol for evaluating and optimising the model. This study will generate valuable knowledge to facilitate the optimisation of current patient care for local treatment. The sharing of our implementation and study protocol can serve as an example for other centres interested in implementing SDM methods in an era characterized by more empowered patients and parents who desire autonomy and reliable and realistic information.

Measuring Effectiveness Based on Patient Experience (Instead of QALYs) in US Value Assessments.

A key challenge in value assessment is how to summarize effectiveness, particularly the impact of interventions on patient health-related quality of life (HRQoL). One approach is to quantify the gains in HRQoL and life expectancy together as quality-adjusted life years (QALYs); however, this approach has faced various criticisms regarding its potential discriminatory aspects toward persons with disabilities, older adults, and the most vulnerable individuals in society. Instead of QALYs, we provide an alternative approach that summarizes HRQoL gains from the perspective of its stakeholders (e.g., patients, parents, and caregivers) using an "experience" scale. On an experience scale, a positive value signifies an experience better than having no experience at all, while a negative value indicates an experience worse than having no experience. To illustrate the merits of this approach, we examine US preferences on the relief of child health problems, namely a discrete choice experiment (DCE) with kaizen tasks and alternatives described using the EQ-5D-Y-3L. Using this approach, we demonstrate the differences in perspectives between parents (N = 179), mothers (N = 99), and fathers (N = 80) of children younger than 18 years of age, as well as the feasibility of this patient-centered approach using a brief DCE survey of less than 100 respondents each (and without QALYs). Specifically, we found that mothers place a higher value on the child's feelings than fathers. The results also suggest other differences between the perspectives of mothers and fathers, but these differences were not statistically significant (p-values < .05). We put forth that future value assessments may summarize gains in HRQoL on a patient experience scale (i.e., experience scale from the patient perspective) to inform decision-making.

A randomized controlled trial on the impact of a specialized training program on anxiety and perceived pain in infertile women undergoing hysterosalpingography

Hysterosalpingography (HSG) is a minimally invasive procedure that can be painful. This study aimed to examine the impact of a tailored training program on anxiety and perceived pain intensity in infertile women undergoing HSG. This research was a clinical trial involving 86 infertile women who were candidates for HSG and conducted at the radiology department of the Royan Infertility Center in Tehran, Iran, between November 22, 2021, to March 11, 2023.The participants were divided into two groups:43 women in the intervention group and 43 women in the control group. The randomization of the samples was carried out using a random number table. The women in the intervention group received two face-to-face group training sessions. Data were collected using valid questionnaires. Additionally, the heart rate and blood pressure of the participants were recorded. Data analysis showed the training intervention was significantly associated with reducing anxiety levels, perceived pain, systolic blood pressure, diastolic blood pressure, and heart rate in women undergoing HSG (p < 0.05). These findings support the use of structured training interventions to improve the overall experience and outcomes for patients undergoing HSG.Trial Registration Number: IRCT20150905023897N4.

Using patient-reported experiences to inform the use of foam dressings for hard-to-heal wounds: perspectives from a wound care expert panel.

Caring for patients with hard-to-heal (chronic) wounds requires a multifaceted approach that addresses their diverse needs, which can contribute to the complexity of care. Wound care providers must have a comprehensive understanding of the patient's comorbid conditions and psychosocial issues to provide personalised and effective treatment. Key quality indicators for effective wound care involves not only selecting appropriate local wound care products, such as foam dressings, but also addressing individual patient experiences of wound-related pain, odour, itch, excessive wound drainage, and self-care needs. The purpose of this review is to inculcate the wound care practice community, research scientists and healthcare industry with a sense of accountability in order to work collaboratively in addressing these unmet care needs.

Bridging the gap: enhancing orthopaedic outcomes through qualitative research integration.

The evidence base within trauma and orthopaedics has traditionally favoured quantitative research methodologies. Qualitative research can provide unique insights which illuminate patient experiences and perceptions of care. Qualitative methods reveal the subjective narratives of patients that are not captured by quantitative data, providing a more comprehensive understanding of patient-centred care. The aim of this study is to quantify the level of qualitative research within the orthopaedic literature. A bibliometric search of journals' online archives and multiple databases was undertaken in March 2024, to identify articles using qualitative research methods in the top 12 trauma and orthopaedic journals based on the 2023 impact factor and SCImago rating. The bibliometric search was conducted and reported in accordance with the preliminary guideline for reporting bibliometric reviews of the biomedical literature (BIBLIO). Of the 7,201 papers reviewed, 136 included qualitative methods (0.1%). There was no significant difference between the journals, apart from Bone & Joint Open, which included 21 studies using qualitative methods, equalling 4% of its published articles. This study demonstrates that there is a very low number of qualitative research papers published within trauma and orthopaedic journals. Given the increasing focus on patient outcomes and improving the patient experience, it may be argued that there is a requirement to support both quantitative and qualitative approaches to orthopaedic research. Combining qualitative and quantitative methods may effectively address the complex and personal aspects of patients' care, ensuring that outcomes align with patient values and enhance overall care quality.

"There is a lot of shame that comes with this": A qualitative study of patient experiences of isolation, embarrassment, and stigma associated with overactive bladder.

Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system. A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes. Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure. OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB.

Patient-reported sexual health outcomes of cervical cancer patients treated with definitive chemoradiation and MRI-guided brachytherapy

BackgroundSexual health is an important survivorship issue in cervical cancer. We assessed patient-reported sexual health outcomes and correlations with oncologist-assessed vaginal toxicity (VT). MethodsThis was a prospective, cross-sectional study of stage IB-IVA cervical cancer patients treated with definitive chemoradiation, who completed a socio-demographic questionnaire and the following patient-reported-outcomes (PROs): Female Sexual Function Index (FSFI), Female Sexual Distress Scale-Revised (FSDS-R), Menopause Rating Scale (MRS), Hospital Anxiety and Depression Scale (HADS). VT was assessed using the CTCAE v4.0. Sociodemographic, clinical data, PROs and VT were summarized using descriptive statistics; correlations were evaluated using linear regression analyses. ResultsBetween August 2018 and April 2022, 73 patients were analyzed. Median age was 49 (range 25–81), 57.5% had vaginal involvement at diagnosis and 76.9% were partnered. Sexual dysfunction (FSFI score ≤ 26), sexual distress (FSDS-R ≥ 11), severe menopausal symptoms (MRS ≥ 17), anxiety (HAD-Anxiety >7) and depression (HAS-Depression >7) were reported in 86.3%, 54.5%, 36.2%, 46.6% and 24.7%, respectively. Grade 2+ VT was reported in 27.4%. No significant associations were found between PROs and VT. On multivariable analysis, non-partnered status, use of hormone replacement therapy, and International Commission on Radiation Units and Measurements – rectovaginal dose (ICRU-RV) >65Gy were associated with worse sexual health (p < 0.005). ConclusionCervical cancer patients self-report high rates of sexual distress, dysfunction and menopause symptoms. Discordance between oncologist-assessed VT and PROs highlights the importance of evaluating the patient's experience. Proactive treatment of menopausal symptoms and attention to radiotherapy doses to the vagina should be considered.

Improving Interprofessional Provider Perceptions About Opioid Use Disorder in the Acute Care Setting Through a Blended Educational Simulation Intervention

Background The influx of patients in the acute care setting with opioid use disorder (OUD) has outpaced many hospitals’ ability to educate interprofessional staff. This creates distressing experiences for interprofessional staff and patients, leading to moral distress and burnout in staff and poor patient outcomes. Objective The purpose of this study was to improve interprofessional staff knowledge, attitudes, and perceptions toward working with patients who have OUD using a blended classroom-simulation–based curriculum. Methods A preintervention and postintervention design was selected. Interprofessional staff (n = 46) participated in a blended classroom-simulation educational intervention focused on the neurobiology of OUD, stigma reduction, pain management, and harm reduction principles, followed by 3 high-fidelity simulation scenarios. Participants completed the Drug and Drug Problems Perceptions Questionnaire to measure staff self-perceived knowledge, skills, and attitudes when working with patients who use drugs before, immediately after, and again 3 and 6 months postintervention. Results Most respondents were nurses with an average of 7.6 (SD, 9.6) years of experience. The majority did not have prior training in substance use disorder before (75.6%). There was a statistically significant decrease in mean Drug and Drug Problems Perceptions Questionnaire scores across the total score mean: 55.2 (95% confidence interval, 52.2-58.3) versus 45.5 (95% confidence interval, 43.9-47.1), P &lt; .001. Decreased score indicates improved attitude and perception. Discussion A curriculum consisting of a blended classroom-simulation intervention was successful at improving several domains regarding perceptions of caring for patients with OUD. This educational intervention can serve as a model for health care systems with goal of improving patient outcomes and staff well-being.

Patient experiences of cancer genetic testing by non-genetics providers in the surgical setting.

As indications for hereditary cancer genetic testing (GT) for patients with breast cancer (BC) expand, breast surgery teams offer GT to newly diagnosed patients to inform surgical plans. There is, however, limited data on the experiences of patients undergoing cancer GT by non-genetic providers. This study used in-depth interviews with 21 women recently diagnosed with BC at a large academic health system to capture their experiences. Post-positivist codebook thematic analysis was used to identify major themes from the interviews. Participants reported an overall positive experience of this GT process, stating that they prefer GT at an existing appointment shortly after their diagnosis, even though they described the conversation as brief. Many participants indicated thinking about or desiring GT before the offer was made. Interestingly, most participants did not see surgical decision-making as the main reason for GT and were instead motivated by concern for relatives and to have complete information. Interview data indicated areas for improvement in patient-provider communication, and most participants agreed that additional reference information on GT in the form of written or video materials would be helpful. Offering GT at an initial breast surgery appointment is acceptable and desired by patients with a new BC diagnosis and should be considered as a way to increase access to GT for these patients. However, additional information for patients is needed to close gaps in communication and provide a trustworthy reference following a busy medical appointment.

Quality of life and survivorship in patients with low-grade ovarian cancer

ObjectiveHigh-grade (HGOC) and low-grade ovarian carcinoma (LGOC) are distinct malignancies with different biological features, treatment paradigms, and life expectancies. However, differences in quality of life (QOL), sleep, and depressive symptoms have not been examined by grade, and neither have inflammatory profiles associated with these symptoms. We aim to characterize QOL and biomarkers by OC grade. MethodsParticipants included patients with HGOC (N = 578) or LGOC (N = 85). Participants completed baseline assessments of psychosocial factors prior to primary surgery or neoadjuvant chemotherapy and contributed saliva for cortisol and blood for interleukin-6 (IL-6) quantification. Samples were collected intraoperatively to quantify tumor cortisol. General linear models were used to examine differences in biological and psychological variables by grade. ResultsAt baseline, patients with LGOC reported less depression (p = 0.018) and sleep disturbances (p = 0.014), but no significant difference in depressive mood (p = 0.11) or QOL (p = 0.51) compared to patients with HGOC, adjusting for age and disease stage. There were trends towards lower tumor cortisol levels (p = 0.078) in LGOC compared to HGOC. One-year post-diagnosis, we found a significant improvement in QOL and fatigue, and a decrease in vegetative depression and IL-6 levels irrespective of grade. ConclusionsWe present the first characterization of psychosocial experiences of patients with LGOC. Despite having a better disease prognosis, patients with LGOC were just as likely to have mood disturbances as those with HGOC. There was a trend towards differences in tumor cortisol by grade. Our findings highlight the need to address well-being in patients with both low- and high-grade ovarian malignancies.

Healthcare, school and daily life experiences of patients with microphthalmia or anophthalmia and their parents.

This qualitative study explored the lived experiences of the patients with microphthalmia and anophthalmia and their parents, focusing on the healthcare, school settings and daily life challenges to improve patient management. In-depth interviews were conducted in Stockholm, Sweden, from October 2022 to June 2023. Participants were recruited through the St Erik Eye Hospital database (2008-2022), and the data was analysed using reflexive thematic analysis. The study included 15 patients (9 female and 6 male), with a median age of 21 years (range 15-31), and 1 parent per patient. Five key themes were identified from the parental interviews and three from the patient interviews. Both groups emphasised the need for improvements in healthcare, including better physician continuity, emotional support, information provision and prosthesis functionality. Families of those with severe bilateral visual impairment highlighted the need for additional school and daily life support. While some parents had future concerns, most patients viewed their condition as a natural part of life. Patients and parents shared insights on the psychosocial impact and suggested improvements in the healthcare and school settings, providing valuable guidance for enhancing care and management for this patient group.

A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs.

Alternative funding programs (AFPs) seek to reduce health plan sponsor costs, for example by excluding specialty drugs from a beneficiary's plan coverage and requiring patients to obtain medications through alternative sources (typically, the manufacturer's patient assistance programs) via an AFP vendor as a third-party. To describe patients' experiences and specialty medication access with AFPs. A survey method consisting of 26 optional single-choice and multiple-choice questions with branching logic divided across 5 sections (related to patient challenges with AFPs) was administered to patients recruited from an experienced AFP online patient panel and a patient advocacy group. The survey assessed patients' awareness of AFPs from their employers, experience with the patient assistance program application process via the AFP vendor, timeliness of medication access (if granted), and/or the health impact of delay in access. All descriptive and exploratory subgroup analyses were conducted by disease area and reported income levels; statistical analyses were carried out for the exploratory analyses. The final sample included 227 patients. Most patients (61% [136/223]) first heard of the AFP as part of their health benefit when trying to obtain their medication. Of 198 patients, 88% reported being stressed because of the medication coverage denial and the uncertainty of obtaining their medication. More than half of patients (54% [115/213]) reported being uncomfortable with the benefits manager from the AFP vendor. On average, patients reported waiting to receive their medication for 68.2 days (approximately 2 months); 24% (51/215) reported the wait for the medication worsened their condition and 64% (138/215) reported the wait led to stress and/or anxiety. Patients who indicated the wait time negatively affected them had considered a job change or left their job at a 3-5-fold higher rate than those who reported no impact from wait time. A significantly higher proportion of patients with hemophilia and other bleeding disorders reported receiving their prescribed medication less often than patients with other conditions (63% [19/30] vs 81% [52/64]; P = 0.022), whereas more patients with lower incomes (<$50,000 vs >$50,000) reported not receiving any medication (12% [7/57] vs 5% [7/129]; P = 0.657), although these differences were not significant. Most patients who obtain their specialty medicines via AFPs reported being uncomfortable with the process and experiencing treatment delays, which may have been linked to disease progression, worsened mental well-being, and consideration of a job change. Employers should be aware of the potential downstream impacts on employee health, retention, and the employee-employer relationship when considering implementing an AFP into their health plan.

Enhancing Patient Experience in the Emergency Department Through Nurse Bundling Strategies and Servant Leadership Principles: A Quality Improvement Project

Enhancing Patient Experience in the Emergency Department Through Nurse Bundling Strategies and Servant Leadership Principles: A Quality Improvement Project

What Makes Up Your Organization’s Genome?

Today’s healthcare providers benefit from knowing the genetic makeup of their patients — understanding their genomes. With that information, they can better review care needs and develop care plans for each individual. What if the genome model were applied to a medical organization? Physician leaders can adapt the elements of culture (genome), DNA (leadership and management), genes (staff), and RNA (communication) to better lead their organizations. The culture would be such that each staff member’s skills would be adapted and applied to achieving the mission, improving the patient experience, and leading to a healthy outcome.

Experiences of caregivers of patients with traumatic brain injury during hospitalization in western China: A qualitative study

ABSTRACT Family members frequently provide both physical and emotional support to patients. Previous studies have focused primarily on the experiences of patients with traumatic brain injury (TBI) and their caregivers during home care and the transition from hospital care to the community, with less emphasis on their experiences during acute hospital care immediately after TBI. This study aimed to explore the experiences of caregivers of patients with TBI during acute hospitalizations. A qualitative descriptive study using individual semistructured interviews was conducted at the trauma center of a tertiary hospital in western China. A purposive sample of 21 caregivers of patients with TBI were recruited. The interviews were conducted face to face in the inpatient ward from July to September 2023. Conventional content analysis was used to conduct the framework analysis. The experiences of caregivers were identified within three key themes: TBI consequences in patients (physical impairments, psychological distress, and cognitive dysfunctions), challenges of caregivers (physiological/emotional/economic burdens, conflicts, and concerns regarding recovery), and needs of caregivers (health information, medical services, and recovery expectations). This study highlights the experiences of caregivers of patients with TBI during hospital stays in western China. The challenges faced by caregivers and the needs of caregivers are multidimensional. Appropriate support should be provided to alleviate the burden of caregiving.

Codesign of a Neurological Physiotherapy Student-Led Clinic With Students and Patients: An Exploratory Qualitative Study.

This study explores students' and patients' views of a UK physical therapy student-led clinic (SLC) for neurological rehabilitation and, using a codesign approach, it proposes an optimal design of a physical therapy SLC for neurological rehabilitation for patient participation and student learning. There is a paucity of literature examining experiences of neurological rehabilitation SLCs. Although research supports the utilization of codesign methodologies with patients and for curriculum development, there remains a gap regarding its application to SLCs in physical therapy for individuals with neurological conditions. Convenience sampling was used to recruit 4 patient and 4 student participants to take part in the study. This qualitative study employed exploratory codesign based on the participatory action research approach. Three online codesign workshops were facilitated by the research team. Thematic analysis of each workshop informed the outline for the next. Patients perceived that the SLC improved their overall well-being, and they highly valued being able to access rehabilitation. Students reported that they developed a range of clinical skills through participation in the SLC but would have liked a more in-depth orientation. The codesign process identified 5 key elements for the optimal design of the physical therapy neurological SLC: student support, continuity, supervision, peer-assisted learning, and orientation. Findings suggest that the SLC provides both a quality learning experience and a patient service, which is safe, effective, and sustainable. Future research should be undertaken with different stages of students and in different university settings. The codesign approach has been shown to be feasible for students and patients and could be used across other aspects of curriculum design. This novel study using codesign methodology provides initial findings of key elements to optimize SLCs in neurological physical therapy, to enhance student learning and patient experience.

Improving Timely Medication Access for Endocrinology and Diabetes Patients: A Quality Improvement Initiative

ABSTRACT Introduction Managing chronic conditions such as endocrinology and diabetes requires consistent access to medications. Traditional methods of medication refill often involve in-person visits to healthcare providers or pharmacies, posing challenges for patients. Online medication refill services offer a promising solution to improve accessibility and convenience. Methods This is a digital-based solution using online medication refill services to enhance the management of endocrinology and diabetes medication refills. It examines the process of online medication refill, including patient registration, refill request submission, verification, provider input, processing, and pickup or delivery. Results Online medication refill services empower patients to easily request refills from the comfort of their homes, streamlining the refill process, and reducing walk-in pressure in clinics. The online medication refill with the option for home delivery option eliminates the need for patients to visit the hospital, further enhancing the patient experience. Before implementing the online medication refill solution, 26 patients will come to the clinic as walk-ins to request medication refills. The average waiting time for each patient is 45 minutes. Each provider will be interrupted for an average of 10 minutes to accommodate the request. The overall processing time required for each walk-in patient to submit the medication request is 1 hour on average. After implementing the online medication refill intervention, zero patients come to the clinic as walk-ins and hence, no interruption to the daily regular clinics. The overall processing time required for submitting the online medication request is now 2 minutes. These interventions promote medication adherence and patient engagement by facilitating access to medications and offering educational resources. Conclusion Online medication refill services represent a valuable tool in the comprehensive management of endocrinology and diabetes. They offer accessibility, convenience, and patient empowerment, potentially improving health outcomes and enhancing the overall patient experience.

Weighing‐up long‐term psychological support for bariatric surgery patients

AbstractBariatric surgery is becoming a more commonly used treatment for the management of obesity; however, measures of effectiveness have tended to rely heavily on the short‐term physical health indicators of success, whilst largely neglecting psychological and social factors. The understandings achieved through listening to the lived experiences of countless individuals as they steered their way through the complex journey of bariatric surgery, this commentary deliberates on some of the unique lived experiences of patients who have undergone bariatric surgery and the overriding and under‐supported long‐term social and psychological aftermath.

Are Extracorporeal Shock Waves Just a Therapeutic Tool?

Background: Focused extracorporeal shock wave therapy (ESWT) has been successfully used to treat musculoskeletal conditions, but ESWT stimulates nociceptors, causing pain deep in the tissue during treatment. The occurrence of pain during ESWT is a side effect, but it can help identify painful sites and assess minimum (MiTI) and maximum (MaTI) pain thresholds to ESWT pressure stimuli. This topic has received limited attention in literature. Methods: This observational study describes a specific approach to using ESWT to study pain in 71 patients. The approach proposes moving the ESWT transducer head of the device over the entire joint surface, progressively increasing the energy level until the patient experiences pain. Results: In the study, MiTI and MaTI were 0.218 ± 0.090 and 0.416 ± 0.165 mJ/mm2 in the affected joint and 0.282 ± 0.128 and 0.501 ± 0.174 mJ/mm2 in the contralateral homologous healthy joint, being significantly lower in the affected joint (MiTI: p &lt; 0.001 and MaTI: p = 0.003, respectively). ESWT induced pain in 94.37% of the sites with the highest subjective pain and in a greater number of sites (204) than digital pressure (123) (p &lt; 0.001). All sites with digital pressure pain also had ESWT pain. Conclusions: These results suggest that the ESWT device may be useful in investigating pain in musculoskeletal conditions and tailoring therapy.

Protocol for Surveying Participants and Professionals’ Experiences in an International Kidney Transplant Clinical Trial

Background Therapeutic misconception is a phenomenon in which participants or researchers misunderstand the nature and purpose of a clinical trial, believing that the primary goal of the trial is to provide them with individualized therapeutic benefit rather than to generate generalizable knowledge that will benefit future patients. Therefore, the perspectives of participants and researchers on these issues are central to improving the quality of health research to increase participant awareness and avoid therapeutic misconceptions. Objective The main objective of this study is to explore the views and experiences of patients and healthcare professionals regarding their participation in a clinical trial, the TTVguideIT randomized controlled trial, as part of the EU funded TTVguideTX project. The study was designed to identify therapeutic misconceptions of participants and health care professionals, assess their experiences with the informed consent process and their concerns regarding privacy and data protection. Methods This study is based on two distinct questionnaires, one intended for the professionals involved in the TTVguideIT clinical trial and the other for the patients. The questionnaires can be completed both online and on paper, allowing each individual to choose the format that suits them best. The questionnaires are written in the languages of the six participating countries, namely German, Spanish, French, Dutch, and Czech. Conclusion This study may help future research design and implementation to include participants' and professionals perspectives on the informed consent process and privacy and data protection, and aspects aimed at minimizing therapeutic misconceptions.