Patient-centered Perspective Research Articles

Defining Primary Sclerosing Cholangitis: Results From an International Primary Sclerosing Cholangitis Study Group Consensus Process

Defining Primary Sclerosing Cholangitis: Results From an International Primary Sclerosing Cholangitis Study Group Consensus Process

Factors associated with patients not proceeding with proposed resective epilepsy surgery

Background: This study evaluated the association between eligible patients not proceeding with resective epilepsy surgery and various demographic, disease-specific, and epilepsy-evaluation variables.Methods: This retrospective case-control study included patients identified as candidates for resective epilepsy surgery at the Montefiore Medical Center between January 1, 2009 and June 30, 2017. Chi-squared, two-tailed, independent sample t-test, Mann-Whitney U test and logistic regression were utilized to identify variables associated with patients not proceeding with surgery.Results: Among the 159 potential surgical candidates reviewed over the 8.5-year study period, only 53 ultimately proceeded with surgery (33%). Eighty-seven (55%) out of these 159 patients were identified as appropriate for resective epilepsy surgery during the study period. Thirty-four (39%) of these 87 patients did not proceed with surgery. Variables independently correlated (either positively or negatively) with the patient not proceeding with surgery were: being employed [Odds Ratio (OR) 4.2, 95% confidence interval (CI) 1.12-15.73], temporal lobe lesion on MRI (OR 0.35, 95% CI 0.14-0.84), temporal lobe EEG ictal onsets (OR 0.21, 95% CI 0.07-0.62), and temporal lobe epileptogenic zone (OR 0.19, 95% CI 0.07-0.55).Conclusion: The novel finding in this study is the association between employment status and whether the patient had epilepsy surgery: employed patients were 4.2 times more likely to not proceed with surgery compared to unemployed patients. In addition, patients with a temporal lobe lesion on MRI, temporal lobe EEG ictal onsets, and/or a temporal epileptogenic zone were more likely to proceed with surgery. Future work will be needed to evaluate these findings prospectively, determine if they generalize to other patient populations, explore the decision whether or not to proceed with epilepsy surgery from a patient-centered perspective, and suggest strategies to reduce barriers to this underutilized treatment.

CMS is only happy when it rains

CMS is only happy when it rains

Impact of COVID-19 Mitigation Efforts on Adults With Serious Mental Illness: A Patient-Centered Perspective.

In response to COVID-19 mitigation policies, mental health and social service agencies have had to rapidly change their operations, creating challenges for patients with serious mental illness (SMI). This study aimed to explore the experiences of adults with SMI navigating these altered systems during the pandemic. In-depth interviews were conducted with 20 hospitalized adults with SMI in the fall of 2020; they were coded using thematic analysis. Most participants found the new systems effective at meeting their essential needs. However, several reported significant unmet needs, including inability to access mental health care and public benefits. These participants lacked identification documents, housing, and/or a personal device. Although none of the participants used telemedicine before COVID-19, most reported no or minimal problems with telemental health. Those reporting difficulties did not have personal devices, were receiving audio-only services, or viewed telemedicine as less personal or too distracting.

Patient Risk Interpretation of Symptoms Model (PRISM): How Patients Assess Cardiac Risk.

While there is a prevailing perception that coronary artery disease (CAD) is a "man's disease," little is known about the factors which influence cardiac risk assessment and whether it varies by gender. 1)Qualitatively capture the complexity of cardiac risk assessment from a patient-centered perspective. 2)Explore how risk assessment may vary by gender. 3)Quantitatively validate qualitative findings among a new sample. This study was conducted in two parts: (1) semi-structured in-depth interviews were audio-recorded, transcribed verbatim, and analyzed using modified grounded theory; (2) emergent themes were surveyed in a separate sample to validate findings quantitatively. Differences were estimated using 2-tailed t-tests and kappa. Participants who were referred for their first elective coronary angiogram for suspected CAD with at least1 prior abnormal test were recruited from a tertiary care hospital. Patient-centered themes were derived from part one. In part two, patients estimated the probability that their symptoms were heart-related at multiple time points. Part 1 included 14 men and 17 women (mean age=63.3±11.8 years). Part2 included 237 patients, of which 109 (46%) were women (mean age=66.0±11.3 years). Part 1 revealed that patients' risk assessment evolves in three distinct phases, which were captured using an Ishikawa framework entitled "Patient Risk Interpretation of Symptoms Model" (PRISM). Part 2 validated PRISM findings; while patients were more likely to attribute their symptoms to CAD over time (phase 1 vs. 3: 21% vs. 73%, p<0.001), women were marginally less likely than men to perceive symptoms as heart-related by phase 3 (67% women vs. 78% men, p=0.054). Patient assessment of CAD risk evolves, and women are more likely to underestimate their risk than men. PRISM may be used as a clinical aid to optimize patient-centered care. Future studies should validate PRISM in different clinical settings.

Financial Toxicity in Head and Neck Cancer Patients Treated With Proton Therapy.

Cancer-related financial toxicity impacts head and neck cancer patients and survivors. With increasing use of proton therapy as a curative treatment for head and neck cancer, the multifaceted financial and economic implications of proton therapy—dimensions of “financial toxicity”—need to be addressed. Herein, we identify knowledge gaps and potential solutions related to the problem of financial toxicity. To date, while cost-effectiveness analysis has been used to assess the value of proton therapy for head and neck cancer, it may not fully incorporate empiric comparisons of patients' and survivors' lost productivity and disability after treatment. A cost-of-illness framework for evaluation could address this gap, thereby more comprehensively identifying the value of proton therapy and distinctly incorporating a measurable aspect of financial toxicity in evaluation. Overall, financial toxicity burdens remain understudied in head and neck cancer patients from a patient-centered perspective. Systematic, validated, and accurate measurement of financial toxicity in patients receiving proton therapy is needed, especially relative to conventional photon-based strategies. This will enrich the evidence base for optimal selection and rationale for payer coverage of available treatment options for head and neck cancer patients. In the setting of cancer care delivery, a combination of conducting proactive screening for financial toxicity in patients selected for proton therapy, initiating early financial navigation in vulnerable patients, engaging stakeholders, improving oncology provider team cost communication, expanding policies to promote price transparency, and expanding insurance coverage for proton therapy are critical practices to mitigate financial toxicity in head and neck cancer patients.

Crowdsourcing the Public's Perception and Systematic Review of Nipple Inversion and Its Repair.

Background: Nipple inversion is a common condition seen in 10% of females. Patients often present with physical insecurities and difficulty breastfeeding and would be best counseled initially by a primary care provider. We examined the body of literature and public perception of nipple inversion to provide a patient-centered perspective of the condition and its repair. Materials and Methods: We conducted a prospective cross-sectional study surveying random volunteers using internet crowdsourcing. Studies examining the correction of nipple inversion reporting posttreatment recurrence rates were considered for systematic review. Results: Five-hundred three people were surveyed, and 398 (mean age 35.6 years, 57.9% female) were included in final analysis. Seventy-one (17.8%) have or once had nipple inversion, and 18 (31.6% of females with nipple inversion) reported resultant difficulty breastfeeding. One-hundred thirty-five (33.9%) would advise repair, and 283 (71.1%) would advise repair if unable to breastfeed. Two-hundred eighteen (54.8%) would search online for more information about nipple inversion. Forty-four studies, including 1,940 patients and 3,361 nipples, were examined for systematic review. Seven techniques severed lactiferous ducts, and 31.8% reported breastfeeding outcomes, but as a number of patients. Studies were inconsistent in the reporting of baseline patient data and outcomes. Conclusion: Nipple inversion may be more common than previously reported. The majority of people would consider surgical correction, advice someone with nipple inversion to undergo repair for breastfeeding, and consult online resources for more information. Methodological and reporting limitations of existing evidence limit conclusions regarding the superiority of operative techniques with regard to patient satisfaction and breastfeeding outcomes.

Addressing consistency and demand uncertainty in the Home Care planning problem

Optimizing Home Care Services is receiving a great attention in Operations Research. We address arrival time consistency, person-oriented consistency and demand uncertainty in Home Care, while jointly optimizing assignment, scheduling and routing decisions over a multiple-day time horizon. Consistent time schedules are very much appreciated by patients who, in this setting, are very sensitive to changes in their daily routines. Also person-oriented consistency positively impacts on service quality, guaranteeing that almost the same set of caregivers take care of a patient in the planning horizon. Demand uncertainty plays a pivotal role, too, since both the set of patients under treatment and their care plan can change over time. To the best of our knowledge, this is the first paper dealing with all these aspects in Home Care via a robust approach. We present a mathematical model to the problem, and a pattern-based algorithmic framework to solve it. The framework is derived from the model via decomposition, i.e. suitably fixing the scheduling decisions through the concept of pattern. We propose alternative policies to generate patterns, taking into account consistency and demand uncertainty; when embedding them in the general framework, alternative pattern based algorithms originate. The results of a rich computational experience show that introducing consistency and demand uncertainty in pattern generation policies is crucial to efficiently compute very good quality solutions, in terms of robustness and balancing of the caregiver workload. In addition, a comparison with a simpler model, where no kind of consistency is imposed, shows the importance of considering consistency in pursuing a valuable patient-centered perspective, with a positive effect also on the efficiency of the solution approach.

帝京平成大学における実務実習前後に実施したオンラインによる参加型学修における工夫，成果，課題についての報告

A practical training program was offered to students at Teikyo Heisei University to help them improve their attitudes as pharmacists and valuable members of society and develop patient-centered perspectives. The program was structured around participatory learning techniques such as group work, small group discussions, and presentations. However, the impact of the spread of COVID-19 in February 2020 and beyond forced the faculty members in charge to devise new ways of replacing participatory learning, which is the core learning method employed by program. This is a practical report on the online classes for participatory learning before and after the practical training program at Teikyo Heisei University. This report stresses the importance of considering the time schedule and sharing knowledge and experience among the faculty members in charge.

A Bayesian-bandit adaptive design for N-of-1 clinical trials.

N-of-1 trials, which are randomized, double-blinded, controlled, multiperiod, crossover trials on a single subject, have been applied to determine the heterogeneity of the individual's treatment effect in precision medicine settings. An aggregated N-of-1 design, which can estimate the population effect from these individual trials, is a pragmatic alternative when a randomized controlled trial (RCT) is infeasible. We propose a Bayesian adaptive design for both the individual and aggregated N-of-1 trials using a multiarmed bandit framework that is estimated via efficient Markov chain Monte Carlo. A Bayesian hierarchical structure is used to jointly model the individual and population treatment effects. Our proposed adaptive trial design is based on Thompson sampling, which randomly allocates individuals to treatments based on the Bayesian posterior probability of each treatment being optimal. While we use a subject-specific treatment effect and Bayesian posterior probability estimates to determine an individual's treatment allocation, our hierarchical model facilitates these individual estimates to borrow strength from the population estimates via shrinkage to the population mean. We present the design's operating characteristics and performance via a simulation study motivated by a recently completed N-of-1 clinical trial. We demonstrate that from a patient-centered perspective, subjects are likely to benefit from our adaptive design, in particular, for those individuals that deviate from the overall population effect.

Videoconferencing-Based Telemental Health: Important Questions for the COVID-19 Era From Clinical and Patient-Centered Perspectives.

The COVID-19 pandemic has intensified the search for digital approaches in mental health treatment, particularly due to patients and clinicians practicing social distancing. This has resulted in the dramatic growth of videoconferencing-based telemental health (V-TMH) services. It is critical for behavioral health providers and those in the mental health field to understand the implications of V-TMH expansion on the stakeholders who use such services, such as patients and clinicians, to provide the service that addresses both patient and clinical needs. Several key questions arise as a result, such as the following: (1) in what ways does V-TMH affect the practice of psychotherapy (ie, clinical needs), (2) to what extent are ethical and patient-centered concerns warranted in terms of V-TMH services (ie, patient needs), and (3) how do factors related to user experience affect treatment dynamics for both the patient and therapist (ie, patient and clinical needs)? We discuss how behavioral health providers can consider the future delivery of mental health care services based on these questions, which pose strong implications for technological innovation, the adaptation of treatments to new technologies, and training professionals in the delivery of V-TMH services and other digital health interventions.

A multicenter, observational study of pain and functional impairment in individuals with major depressive disorder in partial remission: the DESIRE study

Background: The study explores the association between pain and functional impairment in patients with partially remitted MDD, considering both clinician and patient reported outcomes.Methods: Multicenter, observational, and cross-sectional study, with 583 outpatients with partially remitted MDD. Measures of pain intensity (VAS), functional impairment (SOFAS), depressive symptomatology (HAM-D6), and remission from MDD and functional status from a patient-centered perspective (RDQ) were collected. VAS scores (cut-off: 30) were used to divide the sample in two groups: no pain (n = 274) and pain (n = 309). Descriptive data, correlation and regression analyses were obtained.Results: Functional impairment (SOFAS) and pain (VAS) were negatively and significantly correlated in the total sample, and in the group with pain. Lower pain predicted higher functioning. The pain sub-sample was older, less educated, with higher medical comorbidities, higher HAM-D6 scores, and lower functionality (SOFAS). In the RDQ, the pain group showed significantly higher scores in the symptom-related subscales, and lower scores in the subscales related to positive mental health, functioning and wellbeing.Limitations: Correlational and observational design. The criteria and instruments used to measure pain and to define a threshold might limit the generalizability of findings.Conclusions: Pain and functionality should be assessed and treated in patients with MDD in partial remission. Our results indicate that functionality should be assessed with a broader perspective, that also considers positive mental health features.

An assessment of physician reasons for prescribing Insulin Lispro 200 units/ml in Germany

ABSTRACT Objective To understand physicians’ reasons for prescribing Insulin Lispro 200 units/ml (IL200) and their experience with IL200 treatment in Germany. Methods The survey consisted of 28 questions on physician’s profile, average IL200 patients’ characteristics and rationales for prescribing IL200. Questions were rated on a scale of 0 (‘not at all important’/‘strongly disagree’) to 4 (‘absolutely important’/‘strongly agree’). Results The surveyed physicians had a mean (SD) experience of 18.1 (7.0) years managing diabetes, consulted an average of 226.8 patients with diabetes/month and prescribed IL200 to 56.1% of their patients on mealtime insulin (MTI). About 80.0% of IL200 patients had type 2 diabetes mellitus, were overweight/obese, and received >20 units/day of MTI. More than 70.0% of physicians rated patient’s insulin dose, pattern of self-measured glucose levels, hemoglobin A1c (HbA1c) (clinical); adherence, hypoglycemia knowledge, motivation to improve lifestyle, desire to reduce injection volume and emotional struggle with controlling HbA1c (behavioral) as ‘very important’/‘absolutely important’ factors when prescribing IL200. Conclusion Physicians considered IL200 a promising treatment option that reduces the injection burden for patients on MTI. Physicians adopted a patient-centered perspective by aligning IL200 prescribing decisions with each patient’s medical needs and non-clinical preferences, with an aim to encourage treatment adherence through resorting to IL200’s advantageous attributes.

Doctor of Physical Therapy Students' Developing Understanding of Physical Therapy Practice: A Longitudinal Study

Introduction. Clinical reasoning is a complex real-world practice that requires problem framing prior to problem solving. Clinicians and students demonstrate qualitative differences in their approaches to clinical reasoning that are influenced by their beliefs about practice. The purpose of this study was to examine the development of Doctor of Physical Therapy (DPT) students' perspectives on physical therapy practice throughout their entry-level education. Methods. A total of 44 students completed semistructured interviews that included both general and specific descriptions of their perceptions of physical therapy practice at 3 points during their DPT education: first, third, and eighth semester. The qualitative process of thematic analysis was used to identify patterns in the interview data. Patterns of change at both the group and individual levels within each coding dimension were identified. Results. First-semester students demonstrated a biomedical perspective focused on fixing problems related to specific pathologies while prioritizing the physical therapist's medical knowledge. Eighth semester students demonstrated a broader spectrum of perspectives with some retaining a biomedical view and others recognizing a more collaborative approach to practice with an emphasis on patient education and empowerment. There were high levels of variation in student development that became more pronounced as students moved through the curriculum. Discussion and Conclusions. Students' perspectives become more divergent over the 3 years in the program suggesting that natural development through classroom and clinical learning may not be sufficient for some students to develop comprehensive, patient-centered perspectives. The inconsistencies in development suggest that programs may need to give more explicit attention to students' development of perspectives/understandings in order to foster comprehensive development of patient-centered clinicians.

Beyond clinical food prescriptions and mobile markets: parent views on the role of a healthcare institution in increasing healthy eating in food insecure families

BackgroundChildren in food-insecure families face increased barriers to meeting recommendations for fruit and vegetable consumption. Hospitals and pediatric healthcare institutions have attempted to alleviate food-insecurity through various internal programs like food prescriptions, yet little evidence for these programs exist. Consistent with a patient-centered perspective, we sought to develop a comprehensive understanding of barriers to fruit and vegetable consumption and a parent-driven agenda for healthcare system action.MethodsWe conducted six qualitative focus group discussions (four in English, two in Spanish) with 29 parents and caregivers of patients who had screened positive for food-insecurity during visits to a large pediatric healthcare system in a midwestern U.S. city. Our iterative analysis process consisted of audio-recording, transcribing and coding discussions, aiming to produce a) a conceptual framework of barriers to fruit and vegetable consumption and b) a synthesis of participant programmatic suggestions for their healthcare system.ResultsParticipants were 90% female, 38% Black/African American and 41% Hispanic/Latino. Barriers to fruit and vegetable consumption in their families fell into three intersecting themes: affordability, accessibility and desirability. Participant-generated intervention recommendations were multilevel, suggesting healthcare systems focus not only on clinic and community-based action, but also advocacy for broader policies that alleviate barriers to acquiring healthy foods.ConclusionParents envision an expanded role for healthcare systems in ensuring their children benefit from a healthy diet. Findings offer critical insight on why clinic-driven programs aimed to address healthy eating may have failed and healthcare organizations may more effectively intervene by adopting a multilevel strategy.

Non-psychiatric hospitalization length-of-stay for patients with psychotic disorders: A mixed methods study

ObjectivePatients with psychotic disorders experience higher rates of chronic and acute non-psychotic diseases and have frequent non-psychiatric hospitalizations which result in both longer and more varied length-of-stay (LoS) than other patients. This study seeks to use a patient-centered perspective to examine LoS. MethodsThis article reports Phase Two of a mixed methods, exploratory sequential study on non-psychiatric hospitalizations for individuals with psychotic disorders. Patients' experiences were used to guide a quantitative analysis of LoS using a general linear model. ResultsMedical comorbidities were the patient characteristics which had the largest effect on LoS. Certain processes of care highlighted by patients from Phase One were also associated with longer LoS, including: physical restraints (105%), psychiatric consults (20%) and continuous observation (133%). Only recent in-system outpatient appointments were associated with shorter LoS. Data integration highlighted that factors which were important to patients such as partner support, were not always quantitatively significant, while others like medical comorbidities and use of physical restraints were points of congruence. ConclusionsMedical comorbidities were highly associated with LoS but processes relating to longer LoS are those that are used to manage symptoms of acute psychosis. Clinicians should develop policies and procedures that address psychosis symptoms effectively during non-psychiatric hospitalizations. Further research is needed to understand which patients with psychotic disorders are at highest risk of extended length-of-stay.

Partnering patients, caregivers, and basic scientists: an engagement model that fosters patient- and family-centered research culture

Traditionally, basic scientists have not been as engaged in the translational continuum when it comes to engagement with patients, caregivers, and other community stakeholders. In order to address this discrepancy, a multi-disciplinary team at Moffitt Cancer Center conceived of and enacted the Patient-Researcher Forum (PRF) to promote a community-engaged research approach through communication, compassion, and bi-directional research insight for both patients/caregivers and researchers. We outline the structure and implementation of the PRF, its participants, and qualitative and quantitative results across 14 sessions. PRF sessions were conducted between July 2018 and October 2019 and included 29 patients/caregivers and close to 200 researcher/staff participants; post participation survey response rates assessing the PRF experience were 27.6% (patients/caregivers) and 60.3% (researchers) on average. Research staff overwhelmingly reported that the PRF was beneficial, citing that it helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences. Patients/caregivers also reported that the PRF was valuable, indicating that they gained a better understanding of research and that they developed a personal connection with researchers. Our PRF model may provide a strategy for improving basic scientist communication, ethics, and understanding of research impacts on the populations they wish to serve. This innovative model provides a much-needed direct connection between basic scientists and patients/caregivers which creates a 2-way learning platform that fosters understanding and research ideas in the spirit of community-engaged research.

Determination of the patient acceptable symptom state for the Japanese Orthopaedic Association Score in patients undergoing anterior cervical discectomy and fusion for cervical spondylotic myelopathy

BACKGROUND CONTEXTThe patient acceptable symptom state (PASS) has gained attention as a valuable interpretation tool in spine research. While the PASS for the Japanese Orthopaedic Association (JOA) score has been recently proposed, previous analyses demonstrated a weak discriminative ability for the suggested threshold. PURPOSETo define the PASS for the JOA score in patients undergoing anterior cervical discectomy and fusion (ACDF) for cervical spondylotic myelopathy (CSM). STUDY DESIGNRetrospective review of prospectively collected registry data. PATIENT SAMPLE378 patients who underwent ACDF for cervical myelopathy between 2005 and 2014. OUTCOME MEASURESThe main outcome measure was the JOA score. The PASS anchor question was adapted from the NASS questionnaire, “How would you rate the overall results of your treatment?” and the validation question was adapted from same questionnaire, “Has the surgery for your neck condition met your expectation so far?” METHODSPatients were assessed preoperatively, 6 months and 2 years postoperatively using the JOA. Responses to the anchor question were dichotomized and used as the external criterion in receiver operating characteristics (ROC) analysis to define thresholds on the JOA that corresponded to a PASS at 2 years postoperatively. Sensitivity analyses were carried out for various subgroups (based on age, gender, body mass index, comorbidities), preoperative myelopathy severity, time of follow-up (6 months and 2 years) and an alternate definition of PASS. RESULTSOf the 378 patients, 312 (83%) completed 2-year follow-up, of which, 78.5% reported their current state as acceptable. The areas under the curve (AUC) for the ROCs were 0.72 to 0.83 for all analyses, indicating a good discriminative ability of the JOA when assessing if a satisfactory state was attained. The PASS threshold was ≥13.25 points at 6 months (AUC 0.74, sensitivity 78%, specificity 59%) and ≥14.25 points at 2 years (AUC 0.76, sensitivity 74%, specificity 66%). Sensitivity analyses revealed that the 14.25-point threshold on the JOA was robust. PASS responders were approximately 6 times more likely to be satisfied (adjusted OR 6.18, 95% CI 2.87–13.30) and 8 times more likely to have their expectation fulfilled (adjusted OR 8.23, 95% CI 3.81–17.77) compared with non-responders. CONCLUSIONSThis study validates the PASS threshold of 14.25 on the JOA in a robust analysis of a large cohort undergoing ACDF. This knowledge will enable clinicians to identify patients who have attained a satisfactory functional status after surgery for CSM and allow researchers to interpret studies utilizing the JOA from a patient-centered perspective.

The Odyssey of Risk Framing in Cardiovascular Medicine: A Patient-Centered Perspective

The Odyssey of Risk Framing in Cardiovascular Medicine: A Patient-Centered Perspective

"It's Her Eye": Learning to Have a Patient-Centered Perspective.

"It's Her Eye": Learning to Have a Patient-Centered Perspective.