Patient Support Program Research Articles

Treatment Persistence of Ixekizumab in Adults with Moderate-to-Severe Plaque Psoriasis Participating in the Canadian Patient Support Program.

Patients with psoriasis (PsO) should adhere to and be persistent with treatment to maintain disease control. Patient support programs (PSPs) are useful to support patients with disease management. We aimed to understand the real-world patient profile and persistence of ixekizumab-initiating Canadian patients with moderate-to-severe PsO using PSP data. This retrospective observational study was conducted utilizing a Canadian PSP database (May 2016 to March 2020). Inclusion criteria were: age ≥ 18years with moderate-to-severe PsO, initiated ixekizumab, enrolled in the PSP for ≥ 6months, and provided informed consent. Psoriasis Area Severity Index (PASI), body surface area (BSA) involvement, and Dermatology Life Quality Index (DLQI) were collected at PSP entry. Adherence [using the proportion of days covered (PDC)] and persistence (using Kaplan-Meier curves) were assessed after 1-year and 2-year follow-ups. Differences in persistence between biologic-naïve and biologic-experienced patients were compared using Cox proportional hazards model after adjusting baseline parameters. In total, 1891 ixekizumab-treated moderate-to-severe patients with PsO were included. The mean [standard deviation (SD)] age was 52.3 (13.3) years; 51.1% of patients were 45-65years old and 61.4% were male. At baseline, the mean (SD) PASI score was 14.3 (8.1), the DLQI score was 16.5 (7.7), and BSA % was 17.4 (15.1). PsO lesions were commonly located on the hands (33.4%), face (28.6%), and feet (23.8%). Ixekizumab-treated patients were highly adherent [PDC ≥ 80%: 1-year (92.0%), 2-year (87.7%)] and persistent [1-year (90.4%), 2-year (85.6%)]. Biologic-naïve patients were more adherent (1-year, 94.6% versus 87.3%; 2-year, 90.3% versus 83.5%) than biologic-experienced patients. Significantly higher persistence in biologic-naïve versus biologic-experienced patients for 1-year (p < 0.01) and 2-year (p = 0.010) follow-up periods was observed after adjusting for baseline parameters. Patients with moderate-to-severe PsO overwhelmingly remained on ixekizumab treatment for more than 2years while participating in a PSP.

High persistence and low adverse events burden in cladribine treated MS patients from Argentina

BackgroundEarly initiation with high efficacy therapies seems to be better than an escalation approach in terms of disability prevention in patients with relapsing-remitting MS (RRMS). Although efficacy and safety of cladribine tablets have been shown in clinical trials, real-world evidence (RWE) studies from Latin America are scarce. ObjectiveTo describe the baseline characteristics of patients enrolled in the Argentina Patient Support Program (PSP) for cladribine tablets (Adveva®), with at least 1 treatment course, evaluate treatment persistence, adverse event reports from PSP patients and reported relapses characterization. MethodsAnonymized data routinely collected by Adveva® team of patients that received the first dose of cladribine from April 16th 2018 to March 31st 2021 were analyzed. Treatment persistence was defined as the percentage of patients that initiated year 2 (Y2) from the population of patients with elapsed time since year 1 (Y1) cladribine tablet initiation of at least 18 months. In addition, using the pharmacovigilance data, reported adverse events and the time elapsed from treatment initiation to relapse were analyzed. ResultsThe present analysis included 269 patients (mean age: 41.7 ± 16 years) that had initiated Y1 of cladribine tablets treatment between April 16th 2018 and March 31st 2021. Although only 29.4% (79/269) of our population was treatment naïve, the ratio of naïve/switch patients that initiated cladribine tablets increased from April 2018-March 2019 to April 2020-March 2021. From the 110 patients with elapsed time since treatment initiation ≥18 months, 101 patients initiated Y2 indicating a persistence level of 91.8%. During follow-up, 425 adverse events were reported, mainly MS relapse (8.9%, 38/425), fatigue (3.8%, 16/425) and headache (3.5%, 15/425). Lymphopenia and infections were rarely reported by RRMS patients treated with cladribine tablets. MS relapse was more frequently reported in patients switching from a previous treatment (87.5%, 27/32) than in the naïve cohort (12.5%, 5/32). ConclusionsThe first real life experience in RRMS patients from Latin America demonstrated that the Adveva® enrolled support program patients have a high persistence level to oral treatment with cladribine tablets. Our results also confirmed the known safety profile of cladribine tablets, with a low incidence of lymphopenia and infections.

Increasing patient adherence and reducing drug wastage: impact of a personalised patient support programme integrated with a digital connect ecosystem

Searchable abstracts of presentations at key conferences in endocrinology ISSN 1470-3947 (print) | ISSN 1479-6848 (online)

Effects of Regular Exercise, Arts (Origami), and Group Psychotherapy on the Quality of Life, Anxiety, Depression, Patient Satisfaction, and Hope in Cancer Patients in Remission: A Prospective Study

Background: Cancer is a critical public health problem worldwide. Some studies found that group psychotherapy, when applied to cancer patients as a psychiatric approach, also decreases the existing psychopathological symptoms. Objectives: This study aimed to determine the effects of a Quality-of-Life Support Program (QOLSP) for cancer patients in remission. Methods: Twenty-six cancer patients who were monitored while in remission were included in this study. During the eight-week prospective study, a QOLSP was implemented weekly. The patients’ hope, anxiety, depression, and quality of life (QoL) were assessed using different scales. Additional questionnaires assessed the status of program satisfaction and the arm utilization angle of the breast cancer patients (n=20). Results: The total mean score on the hope scale was initially 25.6±3.9 and increased to 29.7±1.9 post-QOLSP (P˂0.001). Additionally, the total mean score on the EORTC QLQ-C30 scale was initially 68.9±4.9 and increased to 92.6±2.2 post-QOLSP (P˂0.001). Moreover, the total mean anxiety and depression scores on the Hospital Anxiety and Depression Scale (HADS) decreased (P&lt;0.001) post-QOLSP. Factors affecting the hope score differences, including the hope pre-score and the sap score (Loss of Appetite), in the EORTC QLQ-C30 symptom scale were significant (P&lt;0.001 and P=0.01, respectively). Factors affecting the anxiety and depression score differences were the HADS anxiety (P=0.001) and depression (P&lt;0.001) pre-scores, in descending order. Moreover, the factor affecting the sql2 score, evaluating General Health Status on the EORTC QLQ-C30, was the sql2 pre-score (P&lt;0.001). All 26 patients were “very satisfied” with the program, and the arm usage angle of the 20 operated breast cancer patients improved. Conclusion: Facilities that can provide a multidisciplinary QOLSP throughout treatment and follow-up will favorably affect QoL, anxiety, depression, hope, and satisfaction among cancer patients.

Creating a proactive interdisciplinary approach to care: Embedding oncology care coordination within an oncology patient and family support program.

51 Background: The benefits of providing psycho-oncology services have been well documented in producing better effective team collaboration, patient outcomes, and reduced healthcare utilization. Cedars-Sinai Cancer spans five locations and serves over 11,000 patients a year. Their robust Patient and Family Support program (PFSP) includes psychiatry, palliative medicine, social work, nutrition, cancer rehabilitation, survivorship, and chaplaincy to envelop patients in multiple dimensions of support. A new oncology care coordination (CC) model embedded a social work (SW) and nurse (RN) CC within PFSP to identify and meet diverse unmet needs of patients through close interdisciplinary collaboration. Methods: Oncology CC was established within PFSP, containing an oncology SW CC and an oncology RN CC. Patients with higher acuity needs were identified through multiple avenues such as: health plan reporting and dashboards in the electronic medical record (EMR) providing alerts for patients with unmet needs. Preliminary data was captured on interdisciplinary collaboration and care coordination from a daily log kept by coordinators, as well as from the EMR. Results: Over 6 months (9/2021 to 2/2022), the PFSP CC team served 688 patients providing 1280 interventions. Of the 1280 interventions, 22% were coordination with other PFSP services; of which 54% was with SCM, 36% with Clinical SW, and 18% represented new referrals. 13% focused on outside services including medical devices, home health, and community resources. 6% comprised of post-discharge calls by the RN CC and 16% represented direct SW CC outreach. Care coordination such as appointment scheduling, assistance with prescriptions and communication with medical teams represented 9%, 1% and 11% of the interventions respectively. Conclusions: Results demonstrated for this subset of patients that the highest needs of oncology PFSP CC were SW and SCM, to address needs such as pain and symptom management, goals of care conversations and community resource linkage. Anecdotally, communication with primary oncology and other medical teams proved to be an essential role of the CC team, particularly to address inpatient to outpatient transitions of care. Discussion: CC team involvement is time-limited and appears to rely on the long-term relationship patients have with PFSP interdisciplinary team members for interventions to be long-lasting and effective. The CC team leveraged existing relationships that PFSP providers had established with primary oncology teams, allowing for timely care coordination. Future goals include: 1) developing an algorithm to better identify patients with higher acuity and unmet needs; 2) measuring impacts of CC services on care outcomes, health care utilization and reduced symptom burden; 3) expanding the CC team to serve more of the patient population.

Person-centred support programme (RESPECT intervention) for women with breast cancer treated with endocrine therapy: a feasibility study

ObjectiveThe peRson-cEntred Support Programme EndoCrine Therapy intervention is a complex intervention encompassing a person-centred support programme for patients with breast cancer being treated with endocrine therapy (ET). The aim of...

Patient and health-care provider experience of a person-centred, multidisciplinary, psychosocial support and harm reduction programme for patients with harmful use of alcohol and drug-resistant tuberculosis in Minsk, Belarus

BackgroundTuberculosis (TB) often concentrates in groups of people with complex health and social issues, including alcohol use disorders (AUD). Risk of TB, and poor TB treatment outcomes, are substantially elevated in people who have AUD. Médecins sans Frontières and the Belarus Ministry of Health have worked to improve treatment adherence in patients with multi-drug or rifampicin resistant (MDR/RR)-TB and harmful use of alcohol. In 2016, a person-centred, multidisciplinary, psychosocial support and harm reduction programme delivered by TB doctors, counsellors, psychiatrists, health-educators, and social workers was initiated. In 2020, we described patient and provider experiences within the programme as part of a wider evaluation.MethodsWe recruited 12 patients and 20 health-care workers, using purposive sampling, for in-depth individual interviews and focus group discussions. We used a participant-led, flexible, exploratory approach, enabling participants and the interviewer to shape topics of conversation. Qualitative data were coded manually and analysed thematically. As part of the analysis process, identified themes were shared with health-care worker participants to enable their reflections to be incorporated into the findings.ResultsKey themes related to the patients’ and practitioners experience of having and treating MDRTB with associated complex health and social issues were: fragility and despair and guidance, trust and health. Prejudice and marginalisation were global to both themes. Counsellors and other health workers built a trusting relationship with patients, enabling guidance through a multi-disciplinary approach, which supported patients to achieve their vision of health. This guidance was achieved by a team of social workers, counsellors, doctors and health-educators who provided professional and individualised help for patients’ illnesses, personal or interpersonal problems, administrative tasks, and job searches.ConclusionsPatients with MDR/RR-TB and harmful use of alcohol faced complex issues during treatment. Our findings describe how person-centred, multi-disciplinary, psychosocial support helped patients in this setting to cope with these challenges and complete the treatment programme. We recommend that these findings are used to: i) inform programmatic changes to further boost the person-centred care nature of this program; and ii) advocate for this type of person-centred care approach to be rolled out across Belarus, and in contexts that face similar challenges.

Psychological and educational support for cancer patients who return to work: A scoping review

Many patients with cancer experience challenges when they return to work (RTW) following cancer diagnosis and treatment. Psycho-educational support is important to facilitate the RTW process. This scoping review examined published reports on psycho-educational support for patients with cancer who RTW. We followed the preferred reported items for systematic reviews and meta-analyses statement and the framework of Arksey and O'Malley. We searched the Cochrane Central Register of Controlled Trials database, PubMed, CINAHL (EBSCO), and ICHUSHI and performed manual searches. We retrieved 1,586 articles and retained 48 for analysis (published January 2000 to December 2020). Physicians, occupational physicians, nurses, social workers, and psychologists provide considerable support in hospitals. Delivery modes included individual, face-to-face, and workbook. Psychological support included emotional, stress coping, counseling, and knowledge. Educational support included information or advice provision, communication skills, problem discussion, and work planning. Employment status was typically the primary outcome. We included 50 measurement scales across quality of life, cognitive functioning and illness, self-efficacy, psychological distress, and fatigue. This review elucidated psycho-educational support for patients with cancer who RTW, and measurement tools for related effects. Based on the characteristics of the psycho-educational support revealed in this study, future studies should examine the development, intervention, and implementation of support programs for patients' RTW.

Budget Impact analysis of a new system of care in Parkinson’s disease patients

Objective: To estimate the economic impact of the introduction of a new care system based on apomorphine and Patient Support Program for motor fluctuations (“on-off” phenomena) in patients with Parkinson’s disease which are not sufficiently controlled by oral anti-Parkinson medication in Italy. Method: A Budget Impact model was developed to evaluate the new care system in patients with Parkinson’s disease over a 3-years’ time horizon. The comparator treatments included in the analysis were treatments based on apomorphine and levodopa + carbidopa. The analysis was conducted from a National Health Service (NHS) perspective. Costs included in the analysis were acquisition costs and device costs. A deterministic sensitivity analysis was carried out to evaluate the uncertainty of the parameters used. A break-even analysis was conducted to identify the minimum number of subjects that would need to be treated with the new care system to obtain a positive Budget Impact (World With – World Without = 0). Results: The analysis shows that the introduction of the new care system based on apomorphine could generate a cost saving incurred by the NHS of over € 5.7 million in 3 years. Break-even analysis shows that if it were possible to intercept with the new treatment at least 9 patients treated with apomorphine, there would not be an increase in costs for the NHS. Conclusion: The new care system would respond to the unmet needs of patients with Parkinson’s disease by generating a reduction in the expenditure incurred by NHS.

A Cross-Sectional Survey Reporting on the Value of Patient-Centered Ostomy Programs: A Smooth Transition After Ostomy Surgery.

PURPOSE:The purpose of the study was to evaluate a postsurgical ostomy patient support program in regard to postsurgical experience, education, skin care, pouching system and accessory use, insurance issues, supplier assistance, hospital readmission status, and the benefit of multiple interactions.DESIGN:Cross-sectional design.SUBJECTS AND SETTING:Potential respondents were randomly selected from a group of adults 18 years or older who underwent ostomy surgery within 6 months prior to survey completion. Nine hundred seventy-one individuals met inclusion criteria, and 297 were selected for analysis, based on having 1 or more program interactions. Data were collected between the second and third quarters of 2020. All participants were residents of the United States.METHODS:Participants were contacted by e-mail containing an invitation to participate in a survey; the e-mail also described the intent of the survey. Survey distribution was conducted by the sponsor and linked to a third-party survey management organization for compilation. The survey questionnaire, developed specifically for the purpose of this study, comprised 73 items that queried demographic and pertinent clinical data, participation in an industry-sponsored patient support program, and their post–hospital discharge experiences including unplanned health care provider visits, emergency department visits, and hospital readmissions.RESULTS:Eighty-three percent (n = 237) of respondents did not have postsurgical ostomy-related emergency department visits, 75% (n = 223) did not have related unplanned physician visits, and 90% (n = 268) did not have related hospitalizations. Participants with 2 or more interactions were more likely to contact a program representative for issues of stoma care, leakage and skin care, ostomy products/accessories, and supplier issues than their single-interaction counterparts.CONCLUSIONS:Study findings suggest that patients with new ostomies benefited from engagement in an industry-sponsored patient support program. The benefit appears to arise from personal interactions and respondents; 2 or more interactions were shown to have greater benefit than a single interaction.

Patient Support Program and Healthcare Resource Utilization in Patients Using Clean Intermittent Catheterization for Bladder Management.

PURPOSE:The primary purpose of this study was to evaluate the impact of a patient-centered, chronic care self-management support program of clean intermittent catheterization (CIC) on emergency department (ED) visits and hospitalizations within the first 30 days of starting CIC. Secondary research objectives were to compare reuse of catheters, adherence to healthcare provider–instructed frequency of CIC, and reasons for nonadherence.DESIGN:A correlational survey design with 2 respondent groups.SUBJECTS AND SETTING:Four hundred forty-five respondents met inclusion criteria for this study; 321 respondents enrolled in an intermittent catheter manufacturer–supported CIC support program, and 124 respondents were not enrolled in a support program (comparison group).METHODS:Participants completed a 37-item online questionnaire designed for purposes of this study. Chi-square test was used to assess differences in the proportions of patients with ED visits and overnight hospital admissions comparing respondents enrolled in the patient support program to those not enrolled. Regression analyses were performed to estimate the effect of the CIC support program on ED visit events and on hospital overnight stays.RESULTS:Within the first month of CIC initiation, 16.1% and 10.2% of the respondents in the comparison group reported at least 1 ED visit and at least 1 overnight hospital stay, respectively. Respondents participating in the CIC support program experienced a 47% decrease in ED visits (adjusted rate ratio: 0.53; 95% confidence interval: 0.30-0.94, P = .036) and a 77% decrease (adjusted rate ratio: 0.24; 95% confidence interval: 0.10-0.62, P = .002) in hospital overnight stays within the first month of CIC initiation, while controlling for age, sex, education, duration of CIC use, region, health insurance status, and medical conditions necessitating CIC. Respondents in the CIC support program group reported an 8% higher adherence rate with the healthcare provider–instructed frequency of CIC usage compared to the comparison group (88% vs 80%, P = .039).CONCLUSIONS:The burden of CIC-related complications within the first month of CIC initiation is significant. A patient-centered, chronic care self-management program for CIC was associated with fewer ED visits and overnight hospital stays during the first month of CIC and improved adherence to prescribed frequency of CIC use.

34304 Persistence and adherence to ixekizumab treatment in patients with moderate-to-severe psoriasis before and during COVID-19 pandemic: Results from the Canadian Patient Support Program

Data on impact of COVID-19 pandemic on biologic medication patterns in psoriasis patients are limited. We assessed persistence and adherence to ixekizumab in moderate-to-severe psoriasis in Canadian Patient Support Program (PSP) before and during COVID-19 pandemic. Patients from Canadian PSP (May 2016-01 January 2021) aged ≥18 years who initiated ixekizumab for psoriasis treatment, enrolled ≥6 months, and provided consent were included (n = 2450). Based on ixekizumab initiation and pandemic lockdown beginning 15 March 2020, four exclusive study periods (SPs) were defined – SP1: initiated >2 years prior to lockdown (≤15 March 2018; n = 963), SP2: 1-2 years prior (15 March 2018-15 March 2019; n = 633), SP3: 0-1 year prior (15 March 2019-15 March 2020; n = 659), and SP4: during pandemic (15 March 2020-01 July 2020; n = 195). Persistence (having 2 years prior to lockdown (95.2%) and during pandemic (94.4%) while lowest was in patients who initiated ixekizumab 0-1 year prior to lockdown (89.7%). Hazard ratios indicated nonpersistence risk was not significantly different between SP4 and other SPs. In conclusion, among ixekizumab-treated psoriasis patients in Canada, 6-month persistence and adherence were unaffected by pandemic.

32929 Dupilumab decreases concomitant therapy use in adults with atopic dermatitis (AD): Long-term data from the RELIEVE-AD study

Introduction: Dupilumab is a fully human anti-IL-4Rα monoclonal antibody approved in the US for patients aged ≥6 years with moderate-to-severe AD inadequately controlled by topical therapies. This analysis evaluated the long-term use of concomitant therapy among adult patients treated with dupilumab from RELIEVE-AD, a prospective, longitudinal patient survey conducted in the US. Methods: Adults with moderate-to-severe AD who were prescribed dupilumab but had not yet initiated treatment were recruited to the RELIEVE-AD study from the dupilumab patient support program. Based on a 4-week recall, surveys assessed concomitant AD therapy use, including oral/ injectable steroids, immunosuppressants, and topical medications (steroids, calcineurin inhibitors, crisaborole), at baseline, throughout 1 year after treatment initiation, and at 30-36 months. Results: Of 698 patients completing the baseline survey, 425 (61.0%) responded at Month 30-36. A significant reduction in concomitant AD medication use from baseline was reported across all medication categories assessed: topical use significantly decreased from 81.2% (baseline) to 57.7% (Month 1) and 44.5% (Month 30-36) (both P < .001). Oral steroid use decreased from 30.1% (baseline) to 6.2% (Month 1) and 4.0% (Month 30-36) (both P < .001). Steroid injection treatment decreased from 8.7% (baseline) to 1.7% (Month 1) and 0.9% (Month 30-36) (both P < .001). The proportion of patients reporting no concomitant treatment use significantly increased from 12.8% (baseline) to 39.6% (Month 1) and 54.4% (Month 30-36) (both P < .001). Conclusions: Dupilumab treatment led to a rapid reduction in concomitant medication use that was sustained through 30–36-month follow-up among adults with moderate-to-severe AD.

Pemberdayaan Kader Kesehatan sebagai Social Support bagi Pasien Stroke

The majority of stroke clients experience sequelae that can cause stress in the home care process, both for stroke patients and their families as caregivers. As a result, social support involving cadres for families with stroke patients is necessary. The service activity aims to increase the knowledge of health cadres about social support for stroke patients and implement social support for stroke patients and their families. The implementation method was through two stages. The first stage was the training of health cadres in Gedangan District with 70 cadres from 15 villages, while stage 2 was empowering health cadres in the community. Each cadre provides social support for families/stroke patients according to where the cadres live. Each cadre was provided with a questionnaire, and the data were analyzed descriptively. The activity results stated that all cadres found that stroke patients and their families experienced stress due to the illness, agreed that stroke patients and their families needed attention, and citizens needed to be prepared if someone had a stroke. In addition, the knowledge of health cadres increases, and cadres are happy with the social support program for stroke patients and their families. The visited stroke patients were happy because they received attention and support. In the long run, this program can be continued in every village by empowering health cadres as agents of reform in the health sector.

A nurse-led, telephone-based patient support program for improving adherence in patients with relapsing-remitting multiple sclerosis using interferon beta-1a: Lessons from a consumer-based survey on adveva® PSP.

BackgroundEvidence suggests that organizational models that provide care interventions including patient support programs may increase patient adherence to multiple sclerosis (MS) therapies by providing tailored symptom management, informational support, psychological and/or social support, lifestyle changes, emotional adjustment, health education, and tailored coaching, thus improving patients' overall quality of life across the disease course.ObjectiveThe main objective of this study was to describe MS patients' self-reported experience of a nurse-led, telephone-based PSP and to explore its potential role in improving disease and therapy management skills.MethodsSurvey data were analyzed from a subset of patients relapsing–remitting MS (RRMS) using interferon beta-1a already registered in the adveva® PSP from three Italian multiple sclerosis centers with a consolidated experience in RRMS disease, treatment management, and PSP programs.ResultsIn total, 244 patient data at baseline were analyzed, of which 115 had a follow-up of at least 6 months. Results from this study provide an early view into the role of this PSP in improving the patients reported overall experience regarding disease management and injectable therapy, thus potentially ameliorating treatment adherence and decreasing health care cost. Moreover, study findings confirm the role of providing a patient-focused support by addressing non-medication-related topics in the PSP consultations. Indeed, patients involved in the adveva® PSP program reported a better psychological status in the follow up as demonstrated by an increased optimism regarding their future, tolerance of disease uncertainty, and their perceived ability to benefit from external help and social support (informal caregivers).ConclusionsAs such, it is reasonable to conclude that the involvement in the adveva® PSP and the PSP's assistance in guiding patients on proper treatment self-management techniques is of great value to patients as it might contribute to improving engagement in their health care journey in terms of perceived self-care skills, emotional coping toward the future and the unpredictability of the disease course and their general attitudes toward the injection itself, involving pain tolerance.

Living well with heart failure: evaluation of an education and support programme for patients and caregivers

Background/Aims Living with advanced heart failure places a considerable burden on patients and their caregivers. Improving the education and support given to patients and caregivers, with the input of palliative care services, could support them to live well with heart failure. This study evaluated an 8-week programme of education and support delivered in a day hospice for patients diagnosed with heart failure and their informal caregivers. Methods An 8-week programme was delivered five times between January 2018 and March 2019, with a total of 39 participants (24 patients and 15 caregivers). Two focus groups were conducted at the end of each programme (one with patients and one with caregivers). Groups were recorded and transcribed verbatim, and inductive thematic analysis was performed. Results Most patient participants were male (92%) and aged &gt;70 years, while most caregiver participants were female (93%) and aged &gt;50 years. The main themes from the patient participants' focus groups regarding the programme were the importance of knowledge; support and communication; having a gateway to resources; and the concept of living with heart failure. The main themes from the caregiver participant focus groups were becoming stronger; altered outcomes for the future; and connection through knowledge. All participants gave positive feedback about the programme, with increased knowledge about heart failure and access to peer support being highlighted as particularly valuable. Conclusions This hospice-based model of support and education, involving patients and their caregivers, has considerable potential as a means of helping these individuals to live well with heart failure. Greater integration between cardiac services and palliative care is needed to support this growing patient group.

Understanding the Treatment Preferences of People Living with Schizophrenia in Australia; A Patient Value Mapping Study.

PurposeTo examine the treatment and long-term outcome preferences for people living with schizophrenia.Patients and MethodsSixty-six Australian adults, living with schizophrenia completed a novel online survey with six sections: Demographic characteristics; Disease history; Quality-of-life; Patient support programmes; Discrete Choice Experiment, and Best-Worst Scaling exercise.ResultsParticipants indicated that they preferred to be involved in treatment decision with their doctor. A minority of participants reported having been previously involved in a patient support programme (28.8%) and only one in six participants had a National Disability Insurance Scheme (NDIS) package (16.7%) with over a third of participants indicating that they were ineligible (37.9%). Participants’ average quality-of-life score was 60%.ConclusionRecent hospitalisation influenced the relative importance of treatment attributes, with effectiveness on hearing voices being the most important treatment attribute. The most important long-term goals were having a stable place to live, being independent, and physical health. People with schizophrenia care about their long-term functional recovery outcomes, rating symptom control and independence as their highest priority. They want to be part of the treatment conversation with their doctors. Therefore, psychiatrists are encouraged to use shared decision-making to establish the treatment course that best aligns with individuals’ long-term goals.

SY04-5 Efficacy of the integrated patient-centered communication support programs for oncologists and patients with rapidly progressing advanced cancer

Communication is an essential aspect of care for patients with progressive serious illnesses and learnable for both patients and medical staffs. We have shown that a communication skills training (CST) for oncologists improves their patient-centered communication behaviors and reduces patients psychological distress (Fujimori et al., 2014), and a question prompt list (QPL) leads to patient reported usefulness (Shirai et al., 2012). CST is recommended in American Society of Clinical Oncology Consensus Guideline (Gilligan et al., 2017).

The Impact of Patient Support Programs in Europe: A Systematic Literature Review

Background and ObjectivePatient support programs aim to provide solutions beyond the medication itself, by enhancing treatment adherence, improving clinical outcomes, elevating patient experience, and/or increasing quality of life. As patient support programs increasingly play an important role in assisting patients, numerous observational studies and pragmatic trials designed to evaluate their impact on healthcare have been conducted in recent years. This review aims to characterize these studies.MethodsA systematic literature review, supplemented by a broad search of gray literature, was conducted following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and Cochrane recommendations. Observational studies and pragmatic trials conducted in Europe to evaluate the impact of patient support programs, published in English or Spanish between 17/03/2010 and 17/03/2020, were reviewed. Two patient support program definitions were applied starting with Ganguli et al.’s broad approach, followed by the European Medicines Agency definition, narrowed to Marketing Authorization Holders organized systems and their medicines. The quality of publications was assessed using the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) statement 22-item checklist.ResultsOf the 49 identified studies following the Ganguli et al. definition, 20 studies met the European Medicines Agency definition and were reviewed. Patient support program impact was evaluated based on a wide range of methodologies: 70% assessed patient support program-related patient-reported outcomes, 55% reported clinical outcomes, and 25% reported economic impacts on health resources. Only 45% conducted a comparative analysis. Overall, 75% of the studies achieved their proposed objectives.ConclusionsThe heterogeneity of the observational studies reviewed reflects the complexity of patient support programs that are built ad hoc for specific diseases, treatments, and patients. Results suggest that patient support programs play a key role in promoting treatment effectiveness, clinical outcomes, and satisfaction. However, there is a need for standardizing the definition of patient support programs and the methods to evaluate their impact.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40271-022-00582-y.

Observed High Adherence to Recombinant Human Growth Hormone Treatment Using a Multi-Component Approach to Improve Adherence in Individuals with Growth Disorders.

We explored whether a multi-component approach - using a digital health device, the easypod™ auto-injector, the 'MySupport' patient support programme (PSP) and a Patient Activation Measure® (PAM®) - could improve adherence in patients receiving recombinant human growth hormone (r-hGH). A 13-item PAM was used to assess caregiver self-reported knowledge, resulting in two PAM scores for 88 patients at four UK hospitals after an average of 5.6 months. Most patients improved their PAM score by ≥1 level (43%) or maintained it (>-1 and <1; 21%). In parallel, 74% of patients maintained (-5 to +5%) or improved (≥5%) their adherence. Further studies are required to evaluate a multi-component approach to adherence in a larger population and for a longer duration.