A scoping review examining patient experience and what matters to people experiencing homelessness when seeking healthcare.

BACKGROUND: Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort. METHODS: A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman's multidimensional quality model. People with lived experience of homelessness were employed as part of the research team. RESULTS: Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America (n = 17), United Kingdom (n = 5), Australia (n = 5) and Canada (n = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of 'accessible and timely', 'person-centred', and values of 'dignity and respect' and 'kindness with compassion' were most prevalent. Among the three patient experience surveys identified, 'accessible and timely' and 'person-centred' were the most frequent domains. The least frequently highlighted domains and values were 'equitable' and 'holistic'. No questions addressed the 'safety' domain. CONCLUSIONS: The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of 'Kindness and compassion' require further emphasis when seeking feedback on healthcare experiences and the domains of 'safety', 'equitable', and 'efficiency' are not adequately represented in existing patient experience surveys.

Bridging the digital health divide-patient experiences with mobile integrated health and facilitated telehealth by community-level indicators of health disparity.

OBJECTIVE: Evaluate the impact of community tele-paramedicine (CTP) on patient experience and satisfaction relative to community-level indicators of health disparity. MATERIALS AND METHODS: This mixed-methods study evaluates patient-reported satisfaction and experience with CTP, a facilitated telehealth program combining in-home paramedic visits with video visits by emergency physicians. Anonymous post-CTP visit survey responses and themes derived from directed content analysis of in-depth interviews from participants of a randomized clinical trial of mobile integrated health and telehealth were stratified into high, moderate, and low health disparity Community Health Districts (CHD) according to the 2018 New York City (NYC) Community Health Survey. RESULTS: Among 232 CTP patients, 55% resided in high or moderate disparity CHDs but accounted for 66% of visits between April 2019 and October 2021. CHDs with the highest proportion of CTP visits were more adversely impacted by social determinants of health relative to the NYC average. Satisfaction surveys were completed in 37% of 2078 CTP visits between February 2021 and March 2023 demonstrating high patient satisfaction that did not vary by community-level health disparity. Qualitative interviews conducted with 19 patients identified differing perspectives on the value of CTP: patients in high-disparity CHDs expressed themes aligned with improved health literacy, self-efficacy, and a more engaged health system, whereas those from low-disparity CHDs focused on convenience and uniquely identified redundancies in at-home services. CONCLUSIONS: This mixed-methods analysis suggests CTP bridges the digital health divide by facilitating telehealth in communities negatively impacted by health disparities.

Lost in the loop - a qualitative study on patient experiences of care in standardized cancer patient pathways.

BACKGROUND: The Norwegian health authorities introduced standardized cancer patient pathways (CPPs) in 2015, aiming to reduce practice variations across hospitals and regions, and improve the continuity, coordination and overall quality of the health care service provided to cancer patients. There has been few studies investigating this change, and that have looked into the organisational and economic benefits of standardized pathways, however the element of care and the patient perspective has been especially neglected. This study explored the care element in cancer patient pathways through an in-depth study of patient experiences. METHODS: The patients were enrolled approximately three years after the introduction of standardized CPPs in Norway. Through a qualitative design with in-depth interviews, a total of 21 interviews were conducted with seven patients between 2018 and 2020. The first interview took place after the diagnosis was established and before treatment, the second interview during treatment, and the final interview approximately one year after the completion of active treatment. The empirical catchment area was eastern Norway. Data were analysed using a theoretical thematic analysis. RESULTS: This study sheds light on the complex challenges patients' faces, while navigating CPPs, including the need for better transition support, improved coordination and continuity in care, and a more holistic approach that encompasses emotional well-being and family support. Three overarching themes were identified: [1] Navigating CPPs: patient care and transition challenges, [2] Fragmented cancer care: challenges in coordination and continuity [3] Unmet needs and overlooked opportunities in CPPs. CONCLUSIONS: Patients experience that cancer patient pathways offer good medical treatment, but that the care element deserves more attention. Current CPPs are trapped in a logic of choice, preventing room for the element of care to receive the attention it requires for the patient to truly experience holistic person-centred care and continuous, well-coordinated services. Based in our study we argue there is a need to look into the missed opportunities for using the CPPs as points of departure for more holistic collaborative models for cancer care.

Evaluating the accuracy of a cataract surgery simulation video in depicting patient experiences under conscious anesthesia.

PURPOSE: To evaluate the accuracy of a point-of-view cataract surgery simulation video in representing different subjective experiences of patients undergoing the procedure. METHODS: One hundred consecutive post-cataract-surgery patients were shown a short simulation video of the surgery obtained through a porcine eye model during the first postoperative week. Patients then answered a multiple-choice questionnaire regarding their visual and tactile intraoperative experiences and how those experiences matched the simulation. RESULTS: Of the patients surveyed (n = 100), 78% (n = 78) recalled visual experiences during surgery, 11% recalled pain (n = 11), and 6.4% (n = 5) recalled frightening experiences. Thirty-six percent of patients (n = 36) were interviewed after their second cataract surgery; there was no statistically significant difference between anxiety scores reported before the first eye surgery and second eye surgery (p = 0.147). Among all patients who recalled visual experiences (n = 78), nearly half (47.4%) reported that the video was the same/similar to their experience. Forty-eight percent of the patients recommended future patients to watch the video before their procedures, and more than a third (36%) agreed that watching the video before surgery would have helped them to relax. CONCLUSIONS: Our model reflects the wide range of subjective patient experiences during and after surgery. The high percentage of patients who found the video accurate in different ways suggests that, with more development, point-of-view cataract simulation videos could prove useful for educational or clinical use. Further research may be done to confirm the simulation's utility, by screening the video for subjects before operations.

Patient Experiences and Provider Perspectives on Accessing Gender-Affirming Surgical Services in the Veterans Health Administration.

BACKGROUND: Transgender and gender diverse (TGD) veterans have a greater prevalence of suicide morbidity and mortality than cisgender veterans. Gender-affirming surgery (GAS) has been shown to improve mental health for TGD veterans. In 2021, the Veterans Health Administration (VHA) announced the initiation of a rulemaking process to cover GAS for TGD patients. OBJECTIVE: This study explores patients' and providers' perspectives about access to GAS and other gender-affirming medical interventions not offered in the VHA including barriers, facilitators, and clinical and policy recommendations. PARTICIPANTS: TGD patients (n = 30) and VHA providers (n = 22). APPROACH: Semi-structured telephone interviews conducted from August 2019 through January 2020. Two TGD analysts used conventional and directed content analysis to code transcribed data. KEY RESULTS: VHA policy exclusions were the most cited barrier to GAS. Additional barriers included finding information about GAS, traveling long distances to non-VHA surgeons, out-of-pocket expenses, post-surgery home care, and psychological challenges related to the procedure. Factors facilitating access included surgical care information from peers and VHA providers coordinating care with non-VHA GAS providers. Pre- and post-operative care through the VHA also facilitated receiving surgery; however, patients and providers indicated that knowledge of these services is not widespread. Respondents recommended disseminating information about GAS-related care and resources to patients and providers to help patients navigate care. Additional recommendations included expanding access to TGD mental health specialists and establishing referrals to non-VHA GAS providers through transgender care coordinators. Finally, transfeminine patients expressed the importance of facial GAS and hair removal. CONCLUSIONS: A policy change to include GAS in the VHA medical benefits package will allow the largest integrated healthcare system in the United States to provide evidence-based GAS services to TGD patients. For robust and consistent policy implementation, the VHA must better disseminate information about VHA-provided GAS-related care to TGD patients and providers while building capacity for GAS delivery.

The Introspective Patient Experience of Mistletoe Therapy in Cancer: A Qualitative Study.

INTRODUCTION: The introspective experience of cancer patients using mistletoe therapy has received little scientific interest, although it is crucial for a holistic understanding of this therapy. This study contributes to patient-centered research and treatment by documenting the subjective experiences of individuals undergoing mistletoe therapy. METHODS: In this qualitative, explorative study, 20 outpatients with a history of various cancer types were recruited from Arlesheim Hospital (Arlesheim, Switzerland). All patients received subcutaneous mistletoe therapy for at least 2 years (median 7.5 years). Data was collected through 2 semi-structured, in-depth interviews per patient. Qualitative content analysis was applied to examine the data. The individual experience of mistletoe therapy was analyzed in relation to 6 predefined levels of human experience: physical, vital, emotional, mental, spiritual and social. In addition, 3 further aspects, considered as cross-dimensional perspectives, emerged out of the material: warmth, immune strengthening, and general wellbeing. RESULTS: Data analysis revealed considerable heterogeneity among patients' experiences with mistletoe therapy. The importance of specific aspects became apparent, such as increased vitality to manage daily life, greater emotional and mental stability, warmth as a multidimensional phenomenon, feelings of safety and protection through mistletoe therapy, heightened self-awareness and improved self-care, as well as sensations of spiritual connectedness. CONCLUSIONS: Prior to this study it had not been shown that cancer patients using mistletoe therapy do have observations on different levels of experience. These results may lead to a deeper understanding of patients receiving mistletoe therapy, enabling them to be supported in a more holistic way both during mistletoe treatment and on their life path. Further investigations into the effects of mistletoe therapy on the emotional, mental, and spiritual level are warranted.

A Randomized Sham-Controlled Mixed Methods Pilot Study of the Feasibility of Acupuncture for Chemotherapy-Induced Neuropathy: Lessons Learned From Patient Experiences in Integrative Cancer Care.

OBJECTIVE: Since there is a lack of effective pharmacological therapies for chemotherapy-induced neuropathy and many patients ask for integrative cancer therapies such as acupuncture, the objective of this pilot study was to describe patients' experiences, and to study the feasibility and short-term effects of genuine acupuncture for chemotherapy-induced neuropathic pain and unpleasant sensations compared to sham acupuncture. METHODS: The pilot study used mixed methods, collecting quantitative and qualitative data. Patients (n = 12) with chemotherapy-induced neuropathy after colorectal cancer were blindly randomized to genuine acupuncture or telescopic sham acupuncture. Individual interviews were conducted, and were analyzed using qualitative content analysis. The patients registered pain and unpleasant sensations (100 mm Visual Analog Scales) before and after n = 120 sessions, n = 60 genuine and n = 60 sham acupuncture sessions. RESULTS: Five categories of patient experiences were described. The neuropathy negatively affected life. Physical activity was perceived to be important for health, but neuropathy was a barrier. The neuropathy required symptom-managing strategies. Acupuncture was pleasant and valuable, but some patients presented doubts regarding its effect mechanisms. After the genuine acupuncture sessions, pain (mean -2.0 steps relief during each session) and unpleasant sensations (-2.4) in the face was reduced more than after sham acupuncture (+0.1 steps worse pain, P = .018, +0.1 steps worse unpleasant sensations, P = .036). After genuine acupuncture, unpleasant sensations in the hands were reduced less (-0.23) compared to after sham acupuncture (-5.5, P = .002). Pain or unpleasant sensations in the feet did not change. CONCLUSIONS: Patients experienced that the neuropathy negatively changed their life and that acupuncture was pleasant and valuable. Patients receiving genuine acupuncture had short-term effects regarding pain and unpleasant sensations in the face compared to patients receiving sham acupuncture, while hands and feet did not improve. The patients were successfully blinded and complied with the acupuncture. We welcome future full-scaled randomized sham-controlled acupuncture studies.

Better cardiac care - the patient experience - a qualitative study.

BACKGROUND: In 2015, a Brisbane tertiary hospital's cardiac unit implemented a new model of multidisciplinary care (Better Cardiac Care (BCC)) for Aboriginal and Torres Strait Islander patients. Since then, clinical indicators for Aboriginal and Torres Strait Islander cardiac patients have improved, but the recipients' voices have not been heard. This research aimed to determine the acceptability and appropriateness, features of value, and opportunities for improvements in this model of care, from the perspective of patients and their family members. METHODS: This descriptive qualitative study employed a narrative methodology. BCC Health Workers contacted prospective participants; with consent, interested individuals were then contacted by the Aboriginal Research Officer (RO) who arranged yarning sessions and consent. Family members were also invited to share their stories of their loved ones' hospitalisation. Two researchers conducted the interviews, using a yarning approach. Inductive narrative analysis, informed by Aboriginal and Torres Strait Islander ways of Being, Knowing, and Doing, focused on enabling participants' stories to be heard and understood from their perspectives. RESULTS: Relationality was at the heart of the BCC model of care, particularly between patients and Aboriginal and Torres Strait Islander staff. The relationality included a responsibility for holistic care, extending beyond hospital discharge, although support and handover for family members required improvement. The Aboriginal and Torres Strait Islander staff understood the contextual and structural challenges faced by participants, including the disempowerment and racism experienced in healthcare. This understanding was shared with the BCC team who, in turn, protected, advocated for, and holistically supported participants through their cardiac health journeys. CONCLUSIONS: Empowering (and employing) Aboriginal and Torres Strait Islander staff, and relating to patients as people, enabled BCC to meet Aboriginal and Torres Strait Islander patient's needs and improve outcomes. The wider health system and health academia could benefit from exploring and valuing Aboriginal and Torres Strait Islander discourses of relationality.

Telemedicine Adoption in an NCI-Designated Cancer Center During the COVID-19 Pandemic: A Report on Patient Experience of Care.

BACKGROUND: Patients with cancer require timely access to care so that healthcare providers can prepare an optimal treatment plan with significant implications for quality of life and mortality. The COVID-19 pandemic spurred rapid adoption of telemedicine in oncology, but study of patient experience of care with telemedicine in this population has been limited. We assessed overall patient experience of care with telemedicine at an NCI-designated Comprehensive Cancer Center during the COVID-19 pandemic and examined changes in patient experience over time. PATIENTS AND METHODS: This was a retrospective study of outpatient oncology patients who received treatment at Moffitt Cancer Center. Press Ganey surveys were used to assess patient experience. Data from patients with appointments between April 1, 2020, and June 30, 2021, were analyzed. Patient experience was compared between telemedicine and in-person visits, and patient experience with telemedicine over time was described. RESULTS: A total of 33,318 patients reported Press Ganey data for in-person visits, and 5,950 reported Press Ganey data for telemedicine visits. Relative to patients with in-person visits, more patients with telemedicine visits gave higher satisfaction ratings for access (62.5% vs 75.8%, respectively) and care provider concern (84.2% vs 90.7%, respectively) (P<.001). When adjusted for age, race/ethnicity, sex, insurance, and clinic type, telemedicine visits consistently outperformed in-person visits over time regarding access and care provider concern (P<.001). There were no significant changes over time in satisfaction with telemedicine visits regarding access, care provider concern, telemedicine technology, or overall assessment (P>.05). CONCLUSIONS: In this study, a large oncology dataset showed that telemedicine resulted in better patient experience of care in terms of access and care provider concern compared with in-person visits. Patient experience of care with telemedicine visits did not change over time, suggesting that implementing telemedicine was effective.

Assessing patient experience of the tenets of osteopathic medicine.

CONTEXT: Previous studies document that both osteopathic physicians and third-party observers identify an approach to the patient that is consistent with the philosophy and tenets of osteopathic medicine, often without investigating whether patients identify or are satisfied with it. Osteopathic physicians and the medical education community understand the distinctiveness of an osteopathic approach to the patient. Understanding the outcomes of an osteopathic approach to patient care includes confirming whether patients experience the tenets of osteopathic medicine in physician visits and, if so, how it relates to their experience of physician empathy and satisfaction with the visit. OBJECTIVES: The objectives of this study were to assess patient experience of the tenets of osteopathic medicine, physician empathy, and satisfaction with the visit and to compare the results for patients who saw DOs with those who saw MD physicians. METHODS: More than 2000 patients at four outpatient clinic facilities were surveyed after a clinical visit on 22 prompts regarding their experiences of physician behaviors, physician empathy, and their own satisfaction with the encounter. Adult patients who were treated by an osteopathic or allopathic physician for a nonemergency encounter and who were not pregnant were included in the analysis. Survey results for 1,330 patient-physician encounters were analyzed utilizing linear regression models comparing constructs representing patient experiences of the tenets of osteopathic medicine (Tenets), physician empathy (Physician Empathy), satisfaction (Satisfaction) with the encounter, as well as additional demographic and encounter variables. RESULTS: Approximately 23.8 % of patients approached during the study period completed a survey (n=2,793), and among those, 54.7 % of patients who consented to the study and who saw a physician provider (n=1,330/2,431) were included. Significant (p≤0.01), positive associations among patient experiences of Satisfaction with the visit and Physician Empathy were observed among those who saw both DO and MD physicians. Patients experienced the Tenets during encounters with both DO and MD physicians, but linear regression showed that their experience of the Tenets was significantly (p≤0.01) and positively explained by their experience of Physician Empathy (ß=0.332, p=0.00, se=0.052) and Satisfaction with the visit (ß=0.209, p=0.01, se=0.081) only when the physician was a DO. CONCLUSIONS: Patients identified physician behaviors consistent with the Tenets and positively associated their experiences of Physician Empathy and Satisfaction with the visit regardless of physician training background. Patient experience of the Tenets significantly explained their experiences of Physician Empathy and Satisfaction after visits with a DO but not after visits with an MD.

Patient Experience of Photobiomodulation Therapy in Head and Neck Chronic Lymphedema.

Purpose: Lymphedema is a common late effect of head and neck cancer treatment that causes various symptoms, functional impairment, and poor quality of life. We completed a pilot, prospective, single-arm clinical trial to determine the feasibility and potential efficacy of the use of photobiomodulation (PBM) therapy for head and neck lymphedema. In this study, we report patients' perceived treatment experience of PBM therapy and provide suggestions to better understand head and neck cancer survivors' experience of PBM therapy. Methods: Head and neck cancer patients who underwent PBM therapy completed face-to-face semi-structured interviews. Interviews were audio-recorded and then transcribed verbatim. Qualitative content analysis was used to analyze the transcriptions from the interviews. Results: Among 12 participants who consented for the study, 11 (91.7%) completed the PBM therapy. Participants described positive experiences and unique benefits about the PBM therapy, for example, decreased swelling, reduced tightness, increased range of motion, increased saliva production, and improved ability to swallow. Some participants (n = 5, 45.5%) delineated challenges related to traffic, travel time, and distance from study location. Many participants proposed suggestions for future research on PBM therapy, for example, research on internal edema and its relationship with swallowing, and indicated patients with severe lymphedema and fibrosis may be more likely to benefit. Conclusions: Findings from this study suggested the potential benefits of PBM therapy in treatment of chronic head and neck lymphedema. Rigorously designed clinical trials are needed to evaluate the effect of PBM therapy for head and neck cancer-related lymphedema. Trial Registration Number and Date of Registration: ClinicalTrials.gov Identifier: NCT03738332; date of registration: November 13, 2018.

A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program.

BACKGROUND: Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research. METHODS: Six liver transplantation patient-engagement program advisors completed training in patient engagement; participated in several virtual sessions; and completed postsession surveys. RESULTS: Qualitative and quantitative results elucidated patient-centered liver transplantation study outcomes and barriers/facilitators to conducting clinical research. Group satisfaction was very high. CONCLUSIONS: The liver transplantation patient-engagement program model provides a paradigm for how to engage patients in the formative steps of patient-centered clinical research.

Patient experiences with micronutrient and overall nutrition management after bariatric surgery: identifying facilitators and barriers to implementing care.

BACKGROUND: Adherence to perioperative guideline recommendations for prophylactic supplementation and regular biochemical monitoring is suboptimal. However, little is known about the patient perspective on this postoperative challenge. OBJECTIVES: To qualitatively explore patient experiences of postoperative micronutrient management and identify patient-reported barriers and facilitators to the provision of nutrition care. SETTING: Two tertiary public hospitals in Queensland, Australia. METHODS: Semi-structured interviews were conducted with 31 participants 12 months after bariatric surgery. Inductive analysis of interview transcripts was performed using applied thematic analysis, and deductive analysis was performed by aligning interview themes against the Theoretical Domains Framework and the Capability, Motivation, and Opportunity Behavior Change Wheel Framework. RESULTS: Participants' perceptions of engagement with the bariatric surgery multidisciplinary team greatly influenced their experience with overall nutrition care, including but not exclusive to micronutrient care. At times, this engagement negatively impacted patients' experiences with their nutrition care and related to varied acceptance of healthcare advice from the team or, at times, an unmet desire for person-centered communication styles. Engaging person-centered care techniques had a positive influence on patient experience with micronutrient and overall nutrition care. Micronutrient management (taking supplements and having regular blood tests) was broadly accepted and enabled by the presence of established medication and blood test routines preoperatively. However, challenges did exist and were practical in nature. Incorporating education on habit-forming techniques was identified as a facilitator to assist with micronutrient management. CONCLUSION: Although participants mostly accept embedding micronutrient management into their life, developing interventions that focus on habit-forming skills and that enable multidisciplinary teams to provide person-centered care is recommended to enhance care after surgery.

Existing gaps and missed opportunities in delivering quality nutrition services in primary healthcare: a descriptive analysis of patient experience and provider competence in 11 low-income and middle-income countries.

OBJECTIVES: To assess the competence of primary healthcare (PHC) providers in delivering maternal and child nutrition services at the PHC level and patients' experience in receiving the recommended components of care. DESIGN: Observational cross-sectional analysis. SETTING: Healthcare facilities in low/middle-income countries (LMICs) with available service provision assessment surveys (Afghanistan (2018), Democratic Republic of Congo (2018), Haiti (2017), Kenya (2010), Malawi (2013-2014), Namibia (2009), Nepal (2015), Rwanda (2007), Senegal (2018), Tanzania (2015) and Uganda (2007). PARTICIPANTS: 18 644 antenatal visits and 23 262 sick child visits in 8458 facilities across 130 subnational areas in 11 LMICs from 2007 to 2019. OUTCOMES: (1) Provider competence assessed as the direct observations of actions performed during antenatal care (ANC) and sick child visits; and (2) patients' experience defined as the self-reported awareness of the nutrition services received during ANC and sick child visits and provider effectiveness in delivering these services. RESULTS: Except for DRC, all countries scored below 50% on patients' experience and provider competence. More than 70% of clients were advised on taking iron supplements during pregnancy; however, less than 32% of patients were advised on iron side effects in all the studied countries. Across all countries, providers commonly took anthropometric measurements of expectant mothers and children; however, such assessments were rarely followed up with advice or counselling about growth patterns. In addition, less than 20% of observed providers advised on early/immediate breast feeding in all countries with available data. CONCLUSION: The 11 assessed countries demonstrated the delivery of limited nutrition services; nonetheless, the apparent deficiency in the extent and depth of questions asked for the majority of tracer activities revealed significant opportunities for improving the quality of nutrition service delivery at the PHC level.

Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS).

PURPOSE: Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS) are frequently underdiagnosed, contributing to patient dissatisfaction in the healthcare system. This study evaluated the health service utilization, care, and subjective experiences of living with chronic illness among adults with HSD and EDS in the United States and Canada. METHODS: This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine. RESULTS: A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians' understanding of the individual's complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each). CONCLUSION: Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations.IMPLICATIONS FOR REHABILITATIONPatients with hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS.Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low.The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management.Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care.

Impact of Merging Into a Comprehensive Cancer Center on Health Care Teams and Subsequent Team-Member and Patient Experiences.

PURPOSE: Comprehensive health care centers are increasingly popular as they offer inclusive health care services under one roof. Often, these centers are formed by merging previously separate clinics. However, there is a lack of systematic guidance on the interprofessional, and interteam and intrateam dynamics that may develop during such an organizational change process. Using team process literature, we identify a possible model to explain how merging into a comprehensive cancer center (CCC) might influence health care teams and their subsequent outcomes, including patient experience. METHODS: We used a mixed-method research design. Qualitative data were collected via semistructured interviews from 20 health care professionals employed at a recently merged CCC. During the time frame the interviews were collected, quantitative data were collected from 50 patients receiving treatment at the cancer center through anonymous paper-pencil surveys. Qualitative interviews were analyzed using thematic analysis, on the basis of the input-process-output team dynamics framework. Descriptive statistics were calculated for patient experience data. Trends between data collections were identified. RESULTS: On the basis of our qualitative analysis, we provide an input-process-output framework that documents positive and negative aspects of interteam and intrateam dynamics associated with the merger process. Additionally, a number of connections were found between health care professional perceptions and quality patient experiences (eg, merger impacts on interteam and patient communication). CONCLUSION: Our findings and model may assist in future merging efforts. Future CCCs may use the proposed framework to better understand and visualize their postmerger progress, in particular from the aspects of interprofessional, and interteam and intrateam dynamics.

Similarities between explaining dizziness and explaining pain? Exploring common patient experiences, theoretical models, treatment approaches and potential therapeutic narratives for persistent dizziness or pain.

Pain and dizziness are common experiences throughout the lifespan. However, nearly a quarter of those with acute pain or dizziness experience persistence, which is associated with disability, social isolation, psychological distress, decreased independence, and poorer quality of life. Thus, persistent pain or dizziness impacts peoples' lives in similarly negative ways. Conceptual models of pain and dizziness also have many similarities. Many of these models are more expansive than explaining mere symptoms; rather they describe pain or dizziness as holistic experiences that are influenced by biopsychosocial and contextual factors. These experiences also appear to be associated with multi-modal bodily responses related to evaluation of safety, threat detection and anticipation, as influenced by expectations, and predictions anticipation, not simply a reflection of tissue injury or pathology. Conceptual models also characterize the body as adaptable and therefore capable of recovery. These concepts may provide useful therapeutic narratives to facilitate understanding, dethreaten the experience, and provide hope for patients. In addition, therapeutic alliance, promoting an active movement-based approach, building self-efficacy, and condition-specific approaches can help optimize outcomes. In conclusion, there are significant overlaps in the patient experience, theoretical models and potential therapeutic narratives that guide care for people suffering with persistent pain or dizziness.

Wide Awake Local Anesthesia No Tourniquet Technique in Hand Surgery: The Patient Experience.

BACKGROUND: We attempted to evaluate patient satisfaction and overall experience during wide awake, local anesthesia, with no tourniquet (WALANT) hand surgery and quantify surgery-related outcomes. METHODS: We conducted a retrospective analysis of patient demographics, comorbidities, and patient reported outcomes via Single Assessment Numeric Evaluation (SANE) scores collected pre- and postoperatively of patients undergoing WALANT surgery by the 2 participating senior authors. A solution of 1% lidocaine with 1:100,000 epinephrine was used by 1 surgeon, while the other used a 1:1 ratio of 1% lidocaine with 1:100,000 epinephrine and 0.5% bupivacaine for local anesthetic injection. Patients were administered a postoperative survey to assess patient experience, including anxiety and pain levels, and overall satisfaction in the perioperative period. RESULTS: Overall, 97.7% of patients indicated that they would undergo a WALANT-style surgery if indicated in the future, 70.5% ate the day of surgery, and a total of 39.1% of patients reported driving to and from surgery. Postoperative SANE scores increased as compared with preoperative scores across all patients. The use of combination 1% lidocaine with 1:100,000 epinephrine and 0.5% bupivacaine was associated with lower intraoperative and postoperative visual analog scale pain scores. CONCLUSIONS: WALANT hand surgery was generally well tolerated with excellent surgical outcomes. Patients reported ease of preparation for surgery, faster recovery, and lack of anesthetic side effects as the main benefits of wide-awake surgery. Combination use of lidocaine and bupivacaine may be better than lidocaine alone with respect to pain control in the initial recovery period.

"I really had somebody in my corner." Patient experiences with a pharmacist-led opioid tapering program.

BACKGROUND: Opioid tapering has been identified as an effective strategy to prevent the dangers associated with long-term opioid therapy for patients with chronic pain. However, many patients are resistant to tapering, and conversations about tapering can be challenging for health care providers. Pharmacists can play a role in supporting both providers and patients with the process of opioid tapering. OBJECTIVE: Qualitatively describe patient experiences with a unique phone-based and pharmacy-led opioid tapering program implemented within an integrated health care system. METHODS: In-depth telephone interviews with patients who completed the program were recorded, transcribed, and analyzed. Themes were identified through a constant comparative approach. RESULTS: We completed 25 interviews; 80% of patients were women (20), with a mean age of 58 years, and 72% (18) had been using opioids for pain management for 10 or more years. Most (60%) described a positive and satisfying experience with the tapering program. Strengths of the program reported by patients included a patient-centered and compassionate taper approach, flexible taper pace, easy access to knowledgeable pharmacist advocates, and resultant improvements in quality of life (e.g., increased energy). Challenges reported included: unhelpful or difficult-to-access nonpharmacological pain management options, negative quality of life impacts (e.g., inability to exercise), and lack of choice in the taper process. At the end of tapering, most patients (72%) described their pain as reduced or manageable rather than worse and expressed willingness to use the program in the future if a need should arise. CONCLUSIONS: Patients in a pharmacist-led opioid tapering program appreciated the program's individualized approach to care and access to pharmacist' expertise. Most interviewed patients successfully reduced their opioid use and recommended that the program should continue as an offered service. To improve the program, patients suggested increased personalization of the taper process and additional support for withdrawal symptoms and nonpharmacological pain management.

'Localism and intimacy, and other rather imponderable reasons of that sort': A qualitative study of patient experience of community hospitals in England.

Debates over the value and contribution of community hospitals are hampered by a lack of empirical assessment of the experience of patients using these services. This paper presents findings from a study which included a focus on patient and family-carer experiences of community hospitals in England. We adopted a qualitative design involving nine case study hospitals. Data collection included interviews with patients (n = 60), carers (n = 28) and staff (n = 89). Through patients and carers highlighting the value of community hospitals feeling 'close to home', providing holistic and personalised care and supporting them through difficult transitions, the study confirms the importance of functional and interpersonal aspects of care, while also highlighting the importance of social and psychological aspects. These included having family, friends and the community close, maintaining social connections during periods of hospital treatment, and feeling less anonymous and anxious when attending the hospital due to the high levels of familiarity and connectedness. Although the experiences uncovered in this study were not uniformly positive, patients and carers placed a high overall value on the care provided by community hospitals, often arguing that these were distinctive when compared to their experiences of using other health and care services. The study suggests the need to weigh the full range of these dimensions of patient experience-functional, interpersonal, social and psychological-when assessing the role and contribution of community hospitals.