Rheumatoid arthritis patients' perspective on the use of prediction models in clinical decision-making.

OBJECTIVES: A rapidly expanding number of prediction models is being developed aiming to improve rheumatoid arthritis (RA) diagnosis and treatment. However, few are actually implemented in clinical practice. This study explores factors influencing the acceptance of prediction models in clinical decision-making by RA patients. METHODS: A qualitative study design was used with thematic analysis of semi-structured interviews. Purposive sampling was applied to capture a complete overview of influencing factors. The interview topic list was based on pilot data. RESULTS: Data saturation was reached after 12 interviews. Patients were generally positive about the use of prediction models in clinical decision-making. Six key themes were identified from the interviews. First, patients have the need for information on prediction models. Second, factors influencing trust in model-supported treatment are described. Third, patients envision the model to have a supportive role in clinical decision-making. Fourth, patients hope to personally benefit from model-supported treatment in various ways. Fifth, patients are willing to contribute time and effort to contribute to model input. And lastly, we discuss the theme on effects of the relationship with the caregiver in model-supported treatment. CONCLUSION: Within this study RA patients were generally positive about the use of prediction models in their treatment given some conditions were met and concerns addressed. The results of this study can be used during the development and implementation in RA care of prediction models in order to enhance patient acceptability.

Patient reported outcome for physical function in idiopathic inflammatory myopathy.

OBJECTIVES: There is an unmet need to develop patient-reported outcomes (PRO) measures for Idiopathic Inflammatory Myopathies (IIM). To investigate the feasibility, compliance, and psychometric properties of NIH's Patient-Reported Outcomes Measurement Information System (PROMIS) physical function-20 (PF-20) in a large U.S. IIM population. METHODS: "Myositis Patient Centered Tele-Research" (My PACER) is a multicentre prospective observational study of IIM patients, competitively recruited through traditional in-person clinic visits (Center-Based Cohort [CBC]), and remotely using smartphone and web-based technology (Tele-Research Cohort [TRC]). The CBC was further randomly divided (1:1 ratio) into a traditional local sub-cohort, and a remote sub-cohort. Data collected included PRO and other patient self-assessments monthly for 6 months. Clinician-reported outcomes were obtained at baseline and 6 months. RESULTS: 120 IIM patients were enrolled (82 TRC/38 CBC, mean age 55 ± 13.4, 75% females, 81% Caucasians), with similar demographics and mean PROMIS PF-20 score between cohorts. The PROMIS PF-20 score was not associated with age, sex or race. The compliance and completion rates were similar between TRC and CBC as well as sub-cohorts. PROMIS PF-20 showed strong test-retest reliability at 1 month. PROMIS PF-20 was significantly associated with all core set measures except extra-muscular global and CK, as well as with most of symptoms, function and physical activity measures. PROMIS PF-20 illustrated concordant change with myositis response criteria and patient assessment, with a large effect size. CONCLUSIONS: PROMIS PF-20 demonstrates favorable psychometric properties including reliability, validity and responsiveness in a large cohort of myositis patients, with similar adherence in local or remotely enrolled patients.

Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study.

BACKGROUND AND OBJECTIVES: Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. PATIENTS AND METHODS: This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective. RESULTS: Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified. CONCLUSION: This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.

Patient-Informed Value Elements in Cost-Effectiveness Analyses of Major Depressive Disorder Treatment: A Literature Review and Synthesis.

OBJECTIVES: Prior work identified 6 key value elements (attributes of treatment and desired outcomes) for individuals living with major depressive disorder (MDD) in managing their condition: mode of treatment, time to treatment helpfulness, MDD relief, quality of work, interaction with others, and affordability. The objective of our study was to identify whether previous cost-effectiveness analyses (CEAs) for MDD treatment addressed any of these value elements. A secondary objective was to identify whether any study engaged patients, family members, and caregivers in the model development process. METHODS: We conducted a systematic literature review to identify published model-based CEAs. We compared the elements of the published studies with the MDD patient value elements elicited in prior work to identify gaps and areas for future research. RESULTS: Of 86 published CEAs, we found that 7 included patient out-of-pocket costs, and 32 included measures of productivity, which were both priorities for individuals with MDD. We found that only 2 studies elicited measures from patients for their model, and 2 studies engaged patients in the modeling process. CONCLUSIONS: Published CEA models for MDD treatment do not regularly include value elements that are a priority for this patient population nor do they include patients in their modeling process. Flexible models that can accommodate elements consistent with patient experience are needed, and a multistakeholder engagement approach would help accomplish this.

Headache/migraine-related stigma, quality of life, disability, and most bothersome symptom in adults with current versus previous high-frequency headache/migraine and medication overuse: results of the Migraine Report Card survey.

BACKGROUND: High-frequency headache/migraine (HFM) and overuse of acute medication (medication overuse [MO]) are associated with increased disability and impact. Experiencing both HFM and MO can potentially compound impacts, including stigma; however, evidence of this is limited. The objective of this report was to evaluate self-reported stigma, health-related quality of life (HRQoL), disability, and migraine symptomology in US adults with HFM + MO from the Harris Poll Migraine Report Card survey. METHODS: US adults (≥ 18 yrs., no upper age limit) who screened positive for migraine per the ID Migraine™ screener completed an online survey. Participants were classified into "current HFM + MO" (≥ 8 days/month with headache/migraine and ≥ 10 days/month of acute medication use over last few months) or "previous HFM + MO" (previously experienced HFM + MO, headaches now occur ≤ 7 days/month with ≤ 9 days/month of acute medication use). Stigma, HRQoL, disability, and most bothersome symptom (MBS) were captured. The validated 8-item Stigma Scale for Chronic Illnesses (SSCI-8) assessed internal and external stigma (scores ≥ 60 are clinically significant). Raw data were weighted to the US adult population. Statistically significant differences were determined by a standard t-test of column proportions and means at the 90% (p < 0.1) and 95% (p < 0.05) confidence levels. RESULTS: Participants (N = 550) were categorized as having current (n = 440; mean age 41.1 years; 54% female; 57% White, not Hispanic; 24% Hispanic; 11% Black, not Hispanic) or previous (n = 110; mean age 47.2 years; 49% female; 75% White, not Hispanic; 13% Hispanic; 4% Black, not Hispanic) HFM + MO. Compared to those with previous HFM + MO (21%), adults with current HFM + MO were more likely to experience clinically significant levels of stigma (47%). Men with current HFM + MO (52% compared to men with previous HFM + MO [25%] and women with current [41%] or previous [18%] HFM + MO), non-Hispanic Black (51% compared to White, not Hispanic [45%] and Hispanic [48%] current HFM + MO groups and White, not Hispanic previous HFM + MO [12%]), current HFM + MO aged 18-49 years (50% compared to those with current HFM + MO aged ≥ 50 years [33%] and those with previous HFM + MO aged 18-49 [34%] and ≥ 50 years [4%]), and employed respondents (53% current and 29% previous compared to those not employed [32% current and 12% previous]) reported higher rates of clinically significant stigma. Those with current HFM + MO were more likely to have worse HRQoL and disability due to headache/migraine. Respondents aged ≥ 50 years with current HFM + MO were more likely than respondents aged 18-49 years with current HFM + MO to indicate that their overall quality of life (66% vs. 52%) and their ability to participate in hobbies/activities they enjoy were negatively impacted by headache/migraine (61% vs. 49%). Pain-related symptoms were identified as the MBS. CONCLUSIONS: Together these data suggest that current and previous HFM + MO can be associated with undesirable outcomes, including stigma and reduced HRQoL, which were greatest among people with current HFM + MO, but still considerable for people with previous HFM + MO.

Transition in epilepsy - A pilot study with patients in and outside of academic centers.

RATIONALE: Epilepsy is a complex condition and seizures are only one part of this disease. The move from pediatric to adult healthcare system proves difficult for many adolescents with epilepsy and their families. The challenges increase when patients have epilepsies associated with intellectual and/or developmental disabilities, autism spectrum disorder, and motor disorders. Knowledge and system gaps may exist between the two systems, adding to the challenges. The main goal of this study is to understand the perception of patients with epilepsy and their families who were preparing to move from pediatric to adult healthcare system or had already moved. METHODS: A survey was distributed to patients/caregivers of patients with epilepsy through patient support groups in North America and in-person through the 2019 Epilepsy Awareness Day at Disneyland. Patients were required to be 12 years or older at the time of the survey and were divided into two groups: those between 12 and 17 years and those 18 years or older. Caregivers answered on behalf of patients who were unable to respond (e.g., intellectual disability). Major components of the survey included demographics, epilepsy details, quality and access to care received in pediatric and adult years, and questions regarding transition and readiness. RESULTS: Responses were received from 58 patients/caregivers of patients with epilepsy from Canada and the United States. In group A (patients between 12 and 17 years), none of the 17-year-old patients were spoken to about transition. Patients (caregivers) with epilepsy and intellectual and/or developmental disabilities (IDD) had less time to discuss important things during the transition/transfer phase than patients with normal intelligence. Finally, there was a statistically significant difference observed in access to specialty care reported in the adult years, compared to the years in the pediatric system. In the group B (patients 18 years and older) a) 35 % still visit their family doctor for epilepsy related treatment despite the majority being on 2 or more antiseizure medications (ASMs); b) 27 % of patients in this group were still being followed by their pediatric neurologist; c) one patient received care only through visits to the emergency department; d) only 4 % felt that they received clear instructions during transfer of care such as knowing the name of the adult healthcare practitioner and/or the name of the care institution they were being transferred to. CONCLUSIONS: This study highlights the lack of appropriate transition to adult healthcare system (AHCS) amongst an unselected group of patients with epilepsy in Canada and United States. An overwhelming majority of patients followed in the community and in academy centers were simply "transferred" to an adult health practitioner, or they remained under the care of pediatricians. Finally, most patients lack access to significant social and medical support after moving to the AHCS.

Multidisciplinary teams and social science: a patient perspective.

Multidisciplinary teams (MDTs) are common in colorectal cancer and have been deemed important when providing care. Yet they take place outside of the patient, often with little consideration of the patient's views, goals and desires. In this paper specific examples from a patient perspective are integrated with the social science literature to provide an overview of areas of disconnect between MDT recommendations and the individual patient. The reasons for these disconnects are explored, including how MDTs relate to dyadic patient-clinician relationships, weak incorporation of patient-oriented outcomes in MDTs, poor integration of nonmedical patient information and the patient perspective and the impact of team dynamics and cognitive decision biases. Consideration of these issues should facilitate higher-quality MDT recommendations that are also more acceptable to patients.

Social science and teams: a patient perspective.

Teamwork is fundamental for providing high quality care and providing positive experiences for patients. Concepts from organisational behaviour and social science are integrated with a patient perspective to elucidate how various aspects of teams impact on the patient experience. Particular attention is devoted to the team composition, the interaction and communication patterns among team members, how teams are structured, coordination among team members, facilitating a positive team climate, and considering patients as a member of the team.

A concept elicitation study to understand the relationship between sleep and pain in rheumatoid arthritis and axial spondyloarthritis.

PURPOSE: This qualitative study (GSK study: 213635) was designed to better understand sleep disturbance as experienced by individuals with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA), and the relationship between sleep disturbance and pain and other aspects of the disease and disease activity. METHODS: Sixty-minute, one-on-one, concept elicitation interviews were conducted with 30 participants (15 with RA and 15 with axSpA) from the US. Interviews were audio-recorded and transcribed verbatim. Interview transcripts were coded and analyzed to explore themes related to pain and sleep disturbance, and relationships among those themes. RESULTS: Pain was a prominent driver of sleep disturbance; 12 participants with RA (80%) and 14 with axSpA (93%) reported that pain impacted their ability to fall asleep, while all 15 with RA (100%) and 14 with axSpA (93%) reported that pain impacted their ability to stay asleep. Two-thirds of participants with RA (67%) or axSpA (60%) described a bi-directional relationship, whereby pain worsened sleep disturbance and sleep disturbance further aggravated pain. Factors other than pain, such as fatigue and emotional health, were also reported as important contributors to sleep disturbance (RA: n = 12/15, 80%; axSpA: n = 14/15, 93%). Participants with RA or axSpA described complex interconnections between fatigue, emotional health, pain, and sleep, often labeling these relationships as "vicious cycles". Notably, half of all participants reported sleep disturbance occurring without pain or other understood causes. CONCLUSION: These perspectives collected from people with RA or axSpA suggest that reducing sleep disruption directly may offer clinically relevant benefits.

The patient perspective on dose optimization for anticancer treatments: A new era of cancer drug dosing-Challenging the "more is better" dogma.

The Patient-Centered Dosing Initiative, a patient-led effort advocating for a paradigm shift in determining cancer drug dosing strategies, pioneers a departure from traditional oncology drug dosing practices. Historically, oncology drug dosing relies on identifying the maximum tolerated dose through phase 1 dose escalation methodology, favoring higher dosing for greater efficacy, often leading to higher toxicity. However, this approach is not universally applicable, especially for newer treatments like targeted therapies and immunotherapies. Patient-Centered Dosing Initiative challenges this "more is better" ethos, particularly as metastatic breast cancer patients themselves, as they not only seek longevity but also a high quality of life since most metastatic breast cancer patients stay on treatment for the rest of their lives. Surveying 1221 metastatic breast cancer patients and 119 oncologists revealed an evident need for flexible dosing strategies, advocating personalized care discussions based on patient attributes. The survey results also demonstrated an openness toward flexible dosing and a willingness from both patients and clinicians to discuss dosing as part of their care. Patient-centered dosing emphasizes dialogue between clinicians and patients, delving into treatment efficacy-toxicity trade-offs. Similarly, clinical trial advocacy for multiple dosing regimens encourages adaptive strategies, moving away from strict adherence to maximum tolerated dose, supported by recent research in optimizing drug dosages. Recognizing the efficacy-effectiveness gap between clinical trials and real-world practice, Patient-Centered Dosing Initiative underscores the necessity for patient-centered dosing strategies. A focus on individual patient attributes aligns with initiatives like Project Optimus and Project Renewal, aiming to optimize drug dosages for improved treatment outcomes at both the pre- and post-approval phases. Patient-Centered Dosing Initiative's efforts extend to patient education, providing tools to initiate dosage-related conversations with physicians. In addition, it emphasizes physician-patient dialogues and post-marketing studies as essential in determining optimal dosing and refining drug regimens. A dose-finding paradigm prioritizing drug safety, tolerability, and efficacy benefits all stakeholders, reducing emergency care needs and missed treatments for patients, aligning with oncologists' and patients' shared goals. Importantly, it represents a win-win scenario across healthcare sectors. In summary, the Patient-Centered Dosing Initiative drives transformative changes in cancer drug dosing, emphasizing patient well-being and personalized care, aiming to enhance treatment outcomes and optimize oncology drug delivery.

Patients' recommendations to improve help-seeking for vaginismus: a qualitative study.

BACKGROUND: Research to improve healthcare experiences for women with vaginismus tends to be produced from the perspective of healthcare professionals or health-based researchers. There is lacking research on women's experiences and recommendations to improve help-seeking for vaginismus from their perspective. To address this research gap, this qualitative study aimed to identify the issues that women face when help-seeking for vaginismus and their recommendations to address it. This sought to support the wellbeing of patients to advocate for their healthcare needs which is often overlooked. METHODS: Using a feminist theoretical approach, semi-structured interviews were conducted with 21 participants who sought help for their vaginismus. Thematic analysis was employed to analyse participants' recommendations. RESULTS: Four main themes emerged: Increase awareness of vaginismus, Dismantle myths about sex, Destigmatise vaginismus, and Empower people with vaginismus during medical consultations. Subthemes were identified as actionable strategies that participants recommended to improve help-seeking and healthcare for vaginismus. CONCLUSIONS: The findings from this study can inform healthcare practice and policy to foster better synchronicity between health professionals and their patients' perceptions and expectations of treating vaginismus. This can promote more acceptance of patients' advocacy of their needs and goals to improve the therapeutic alliance and treatment outcomes for vaginismus in healthcare practice. The strategies recommended to increase awareness of vaginismus and challenge its stigma should be considered in policy to incite a culture of change in healthcare practice and broader society.

The emotional impact of uncomplicated urinary tract infections in women in China and Japan: a qualitative study.

BACKGROUND: Uncomplicated urinary tract infections (uUTIs) are one of the most common community-acquired infections, particularly among women. Common symptoms of UTI include dysuria, urinary urgency and increased frequency, and lower abdominal pain. With appropriate treatment, symptoms may resolve in a few days. However, there is a lack of research on the emotional impact of this disease. We conducted a qualitative, interview-based study to gain a greater understanding of the emotional impact of uUTIs in women in China and Japan. METHODS: A qualitative, exploratory, in-depth, interview-based study was conducted between 19 November 2020 and 25 February 2021. Women aged ≥ 18 years who experienced ≥ 1 uUTI and received antibiotic treatment in the past year were eligible for inclusion. Participants must have experienced ≥ 1 of the following symptoms during a uUTI episode: urinary urgency, frequency, dysuria, or lower abdominal/suprapubic pain. Participants who reported back pain or fever (indicative of complicated UTI) were excluded. Participants with recurrent or sporadic UTIs were included, with specific screening criteria used to ensure capture of both groups. Following a screening call, a structured, in-depth telephone interview (~ 30 min in duration) was conducted by three female external moderators trained in qualitative interviewing, assisted by an interview guide. Interviews were analysed individually and thematically, with the results presented within the identified themes. RESULTS: A total of 65 women with uUTI completed the in-depth telephone interview: 40 (62%) from China and 25 (38%) from Japan. Participants reported that the symptoms of uUTI affected multiple aspects of their lives, and described feelings of embarrassment, frustration, guilt, dread, and loneliness associated with symptoms that interfered with relationships, work and daily activities, and sleep. Participants reported seeking healthcare from several different points of contact, from local pharmacies to hospitals. CONCLUSIONS: Our analysis highlights the profound emotional impact of uUTIs in women in China and Japan, and the journey these participants take before their initial interaction with a healthcare professional. These insights emphasise the need to better understand the full impact of uUTI, and the role of healthcare professionals in improved patient education and support.

Understanding the quality-of-life experiences of older or frail adults following a new dens fracture: Nonsurgical management in a hard collar versus early removal of collar.

INTRODUCTION: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short-term quality-of-life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision-making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality-of-life. METHODS: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12-16 weeks later. Data were analysed using a framework approach. RESULTS: Both participant groups (SM/ERC) reported substantial, negative quality-of-life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. CONCLUSION: Study findings can be used to support informed decision-making about SM/ERC management of dens fractures in older/frail patients. PATIENT OR PUBLIC CONTRIBUTION: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings.

The experience of feeling old after a fragility fracture.

BACKGROUND: There has been little exploration of the effect of fragility fractures on patient perceptions of their age. The common assumption is that fractures "happen to old people". In individuals with a fragility fracture, our objective was to explore the experience of feeling old after sustaining a fragility fracture. METHODS: A secondary analysis of data from 145 community-dwelling women and men participating in six qualitative primary studies was conducted relying on a phenomenological approach. Participants were English-speaking, 45 years and older, who had sustained a recent fragility fracture or reported a history of previous fragility fractures. Data for the analysis included direct statements about feeling old as well any discussions relevant to age post-fracture. RESULTS: We highlight two interpretations based on how individuals with a history of fragility fracture talked about age: (1) Participants described feeling old post-fracture. Several participants made explicit statements about being "old". However, the majority of participants discussed experiences post-fracture that implied that they felt old and had resigned themselves to being old. This appeared to entail a shift in thinking and perception of self that was permanent and had become a part of their identity; and (2) Perceptions of increasing age after sustaining a fracture were reinforced by health care providers, family, and friends. CONCLUSIONS: Our findings challenge the notion that fractures "happen to old people" and suggest that fractures can make people feel old. Careful consideration of how bone health messages are communicated to patients post-fracture by health care providers is warranted. (Word Count: 248).

Value in care: The contribution of supportive care to value-based lung cancer services-A qualitative semistructured interview study.

INTRODUCTION: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value-based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value-based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. METHODS: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. RESULTS: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person-centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value-based care. CONCLUSIONS: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value-based cancer care. PATIENT OR PUBLIC CONTRIBUTION: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co-design approaches are embedded in our work.

Exploring Patients' Perceptions on Injectable Opioid Agonist Treatment: Influences on Treatment Initiation and Implications for Practice.

INTRODUCTION: Injectable opioid agonist treatment (iOAT) with diacetylmorphine is an effective option for individuals previously considered non-responsive to opioid substitution treatment. Despite implementation in Canada and several European countries, relatively few eligible people choose to initiate iOAT. To better understand what encourages or deters prospective patients from initiating iOAT, the current study explores patients' perceptions on iOAT and how these influence therapy initiation in practice. METHODS: We conducted 34 semi-structured interviews with individuals currently in or eligible for iOAT in two German outpatient iOAT clinics. Transcripts were analysed following qualitative content analysis, with development of inductive categories and use of consensual coding. For member checking, we consulted individuals with lived experiences prior to data collection and publication. RESULTS: Participants based their choice to initiate iOAT on the perceived implications of the treatment on one's daily life and individual recovery. Participants were encouraged to initiate iOAT due to the therapy's perceived potential in reducing cravings and substance use, its positive health consequences, and due to the image of iOAT as a path towards abstinence. Regarding deterring perceptions, participants feared a profound impairment of daily life due to factors such as the daily visits to the clinic, were concerned about whether iOAT would sufficiently promote or even impede one's recovery, and described negative health effects. CONCLUSION: Perceptions found in this study profoundly influenced participants' decisions on iOAT enrolment and contextualize the previous literature. The study reveals the dynamic coexistence of different perceptions about iOAT and sheds light on the inner-group stigmatization of iOAT. Practitioners and future research should acknowledge the complexities found in the current study in order to exploit the full potential of effective treatment modalities such as iOAT.

Views and experiences of healthcare professionals and patients on the implementation of a 23-hour accelerated enhanced recovery programme: a mixed-method study.

BACKGROUND: An accumulating body of research suggests that an accelerating enhanced recovery after colon surgery protocol is beneficial for patients, however, to obtain these effects, adherence to all elements of the protocol is important. The implementation of complex interventions, such as the Enhanced Recovery After Surgery protocol (ERAS), and their strict adherence have proven to be difficult. The same challenges can be expected in the implementation of the accelerated Enhanced Recovery Pathways (ERPs). This study aimed to understand the perspectives of both healthcare professionals (HCPs) and patients on the locally studied acCelerated enHanced recovery After SurgEry (CHASE) protocol. METHODS: For this mixed-method study, HCPs who provided CHASE care and patients who received CHASE care were recruited using purposive sampling. Ethical approval was obtained by the Medical Ethical Committee of the Zuyderland Medical Centre (NL71804.096.19, METCZ20190130, October 2022). Semi-structured, in-depth, one-on-one interviews were conducted with HCPs (n = 13) and patients (n = 11). The interviews consisted of a qualitative and quantitative part, the protocol evaluation and the Measurement Instrument or Determinant of Innovations-structured questionnaire. We explored the perspectives, barriers, and facilitators of the CHASE protocol implementation. The interviews were audiotaped, transcribed verbatim and analysed independently by two researchers using direct content analysis. RESULTS: The results showed that overall, HCPs support the implementation of the CHASE protocol. The enablers were easy access to the protocol, the relevance of the intervention, and thorough patient education. Some of the reported barriers included the difficulty of recognizing CHASE patients, the need for regular feedback, and the updates on the implementation progress. Most patients were enthusiastic about early discharge after surgery and expressed satisfaction with the care they received. On the other hand, the patients sometimes received different information from different HCPs, considered the information to be too extensive and few experienced some discomfort with CHASE care. CONCLUSION: Bringing CHASE care into practice was challenging and required adaptation from HCPs. The experiences of HCPs showed that the protocol can be improved further, and the mostly positive experiences of patients are a motivation for this improvement. These results yielded practical implications to improve the implementation of accelerated ERPs.

Patient satisfaction after lower limb replantation surgery for traumatic amputation - a qualitative study.

BACKGROUND: The majority of published literature clinically assesses surgical outcomes after lower limb replantation for traumatic amputations. However, patients' satisfaction and quality of life may not be accurately measured through rigid scoring using standardized patient reported outcome measures. PURPOSE: The aim of this study was to qualitatively assess patient satisfaction and factors associated with achieving good outcomes after successful lower limb replantation surgery. METHODS: A semi-structured interview was conducted with 12 patients who underwent lower limb replantation surgery following traumatic amputation injuries. The interview focused on the patients' experience and satisfaction throughout their injury, surgical journey, rehabilitation and reintegration into their communities. An inductive and deductive thematic analysis was applied using the recorded transcripts to evaluate the overall satisfaction of the patients after lower limb replantation surgery. RESULTS: The following observations emerged from the structured themes among all the patients interviewed: (1) Family and social support was significantly associated with improved qualities of life and satisfaction after lower limb replantation; (2) Patients were generally satisfied with their outcomes despite limitations in physical capabilities; (3) Satisfaction was associated with acceptance of their cosmetic deformity; (4) Social integration and being able to participate in a meaningful manner was associated with greater satisfaction after recovery. CONCLUSIONS: Patients who undergo lower limb replantation can have a significantly improved quality of life if they have strong social support, are able to contribute in a meaningful manner to their communities after surgery, and are accepting of their cosmetic deficiencies.

Which social accountability competencies make a good physician? A qualitative investigation of the patient perspective on social accountability.

OBJECTIVE: Social accountability is an emerging theme in health care education. In previous literature, the perspectives of patients regarding the competencies that they think are required for physicians to demonstrate in this domain are scarce. This study aims to get insight into the competencies in the domain of social accountability that, according to patients, should be demonstrated by physicians. METHODS: Online semi-structured interviews with 18 patients in the Netherlands were conducted as part of an exploratory qualitative study. Snowballing and convenience sampling techniques were used to recruit participants. The grounded theory method was used to qualitatively analyze the interviews. RESULTS AND CONCLUSION: Patients identified five competencies of a physician in the domain of social accountability: (1) Taking patient's characteristics into account and tailoring care to the individual patient, (2) Taking the broader community into account, (3) Balancing between care for the individual patient versus concern for society, (4) Providing guidance to patients in the navigation within the health system, and (5) Taking climate impact into account. Patients stated that the importance of these competencies are dependent on the specialism. PRACTICE IMPLICATIONS: The formulated competencies can be used to better align medical education focussing on social accountability to the expectations of patients.

Prioritization of Adverse Consequences After Total Knee Arthroplasty Contributing to a Poor Response: A Best-Worst Scaling Exercise Among Total Knee Arthroplasty Patients and Knee Specialists.

BACKGROUND: Total knee arthroplasty (TKA) can have a number of adverse consequences for patients that might contribute to a poor outcome. This study aimed to prioritize these consequences, from the perspective of patients and knee specialists. METHODS: There were 95 TKA patients and 63 knee specialists who prioritized a set of 29 adverse consequences, based on a previous qualitative study, using a Maximum Difference Scaling method. A hierarchical Bayesian analysis was used to calculate relative importance scores. Differences and agreements between patients versus knee specialists and satisfied versus dissatisfied patients were analyzed using Mann-Whitney-U tests and Kendall's coefficients of concordance. RESULTS: There were 4 out of 5 items in the top-5 of both patients and knee specialists that were similar, however, the ranking was different. The highest-ranked consequence for patients was: "Inability to do normal activities such as walking, cycling, swimming and heavy household chores", while knee specialists ranked: "No improvement in pain during the day" as the highest. "No improvement in walking" was in the patients' top-5, but was not ranked in the top-5 of knee specialists. For satisfied and dissatisfied patients, the top-5 of consequences was similar. CONCLUSION: Comparable perspectives were found for patients versus knee specialists and satisfied versus dissatisfied patients on the importance of adverse consequences after TKA. However, when looking in more detail, differences in ranking of specific subitems suggest that patients place slightly more importance on the inability to perform valued activities, while knee specialists prioritize lack of pain relief to a higher degree.