Patient Support Programs Research Articles

Enhancing healthcare outcomes and cost efficiency through patient support programs: a comprehensive analysis

Abstract Introduction Treatment retention is crucial for patients with chronic diseases, impacting both clinical outcomes and healthcare costs. Patient Support Programs (PSP), often sponsored by pharmaceutical companies as a wraparound support service for new and innovative medicines, have been shown to be a viable tool in supporting treatment retention and adherence1. Utilizing tools like Patient Activation Measure (PAM®) equips healthcare providers with a means to evaluate the impact of these PSPs on patients' activation and their potential to adhere to medication. The PAM is a behavioural concept focusing on a patient’s understanding of their role in their healthcare, and how competent they feel to fulfil that role. Crucially, there is substantial evidence indicating a strong association between higher PAM scores and improved clinical outcomes2. Aim This study objectives are to evaluate the effectiveness of PSP in reducing treatment drop-off; to investigate the impact of PSP on patient activation/PAM levels; and to analyse potential cost savings from patient activation through PSP participation. Methods The study population includes patients (n= 97795) diagnosed with chronic diseases receiving one of three services from a Clinical Homecare company: (1) Direct-to-patient medication delivery (DD); (2) DD plus self-administration training and (3) DD, self-administration training and PAM-based PSP. Patient “drop-off” from treatment was analysed across all three services and defined as discontinuation of medication due to unwillingness to engage, non-response to engagement attempts, or requests to put the service on hold. Additionally, change in PAM level/activation for patients who completed baseline and follow-up PAM surveys between October 2020 and March 2024 (n=1880) was considered. Finally, expected cost saving was examined, both as a result of the observed change in activation for PSP patients as well as in a hypothetical scenario where patients in DD and self-administration training are redirected to PSP. Ethical approval was not required because the study does not involve any patient interaction/intervention whatsoever. It was a retrospective data analytical study, using existing and fully anonymised patient data from routine clinical care. Results Fewer patients drop off from treatment when they are on the PSP (1.1%) compared to those that are on self-administration training (2.1%) or DD (2.8%). Participation in PSP also positively impacted PAM scores across all therapies, with average improvements ranging from 1 to 8.1 points per patient. Patients in the lower two activation levels (typically at the greatest risk of non-adherence) experienced the most substantial gains (ranging from 8.4 to 17.4 points) emphasizing the significance of intervention. These improvements in PAM scores by PSP translated to substantial cost savings for the health system, amounting to £1,028,669. Finally, where the same treatment drop-off rate and PAM performance ratio are applied to a hypothetical scenario involving the redirection of patients from DD and self-administration training to PSP, there is a further potential cost savings of £4,298,277. Conclusion Participation in PSP improves patient activation and the potential to adhere to prescribed medication, while producing significant financial benefits. Further research is needed to understand how these benefits may vary across different therapy areas and within primary, secondary, and homecare settings.

Prostate cancer survivorship of Australian men living with prostate cancer: Patient support programs in Australia.

Treatment for prostate cancer (PC) is associated with adverse effects, especially in patients receiving androgen deprivation therapy (ADT). The Australian Government, non-governmental organisations and pharmaceutical companies responsible for marketing ADT have initiated and sponsored various strategic support programs for patients diagnosed with PC. This professional article provides an overview of available PC patient support programs in Australia to assist general practitioners (GPs) to direct patient referrals and optimise clinical care. These PC support programs provide useful assistance on educational materials, decision support, clinical care management and referral to specialised services (eg continence advice, sexual health counselling and psychological support). More concerted efforts and smarter investment in PC survivorship programs are necessary to engage, educate and improve the lives of men living with PC more effectively.

Outcomes of a patient support programme for subcutaneous immunoglobulin therapy in patients with primary or secondary immunodeficiencies or chronic inflammatory demyelinating polyneuropathy.

Subcutaneous immunoglobulin (SCIg) therapy is important in the treatment of primary (PID) and secondary immunodeficiencies (SID) and chronic inflammatory demyelinating polyneuropathy (CIDP). Patient support programmes (PSPs) help patients self-administer medication regimens and play a more active role in the self-management of their medical conditions. To describe the effectiveness of the CSL Behring CARES PSP in optimising the quality use of SCIg in a hospital-free environment. This retrospective, observational study analysed records of patients enroled in the CSL Behring CARES PSP. Key outcomes were accessibility and effectiveness. Data were extracted from the patient database and analysed using descriptive methods. Seven hundred eighty-nine patients with PID (30.8%), SID (53.4%) and CIDP (15.8%) were enroled in the CARES PSP, 92.8% of whom were referred from public hospitals and the remaining from private hospitals. Of the total patient population, 697 (88.3%) received the nurse-led SCIg self-administration training and education (COACH), out of which 656 (94.1%) completed training and achieved competency after an average of 2.3 training sessions. The proportions of patients who achieved competency were similar across age groups and prior SCIg hospital education status. This is the largest real-world evidence study that describes the effectiveness of SCIg PSPs across three therapeutic disease states. These PSPs can optimise hospital resources such as infusion nurse time and allocation of infusion chairs that were once used for intravenous immunoglobulin infusions, improve patient access to SCIg therapy and enable patients self-administer SCIg outside a hospital environment.

Expanding opportunities in health data: Enhancing research by facilitating linkage of Ontario’s population-level health administrative data with data from patient support programs (PSPs)

ObjectivesPatient Support Programs (PSPs) provide real-world evidence on short-term outcomes and drug adherence for specialty care. These data are collected directly from patients by pharmaceutical companies. Data linkage is facilitated by a publicly-funded health research institute which houses population-based, individual-level health administrative data for 14 million Ontario residents in Canada since 1992. Linkage provides a more comprehensive and transparent view of patients’ pathways and care. ApproachIndustry-funded research conducted through the data & analytic service must align with the institute’s mission, vision and values, and demonstrate a clear public benefit. For transparency, and to support broader public benefit and research access, final deliverables and analytic plans are posted on the institute’s website. Privacy impact assessments are conducted to ensure ethics approvals, consent and data sharing agreements are established, prior to data importation. To safeguard privacy, designated data covenantors encrypt and link the PSP data with in-house data holdings. Analyses are performed by senior analytic staff, providing researchers with summary-level reports. ResultsSince 2016, the institute has worked with organizations to link data for research, including PSP data on thousands of patients, enabling crucial insight into treatment patterns, drug adherence, costs and long-term outcomes. ConclusionLinkage of privately-owned PSP data with administrative health data at the institute, provides opportunities to identify gaps in care and improve quality of research. Data challenges around bias, transparency, completeness, and comprehensiveness are minimized. ImplicationsResults provide decision-makers and healthcare professionals with a trusted and comprehensive understanding of patient care pathways to improve health outcomes.

Impacts of X-linked Retinitis Pigmentosa and Patient Pathways in European Countries: Results from the Cross-sectional EXPLORE XLRP-1 Physician Survey.

X-linked retinitis pigmentosa (XLRP) is a rare, incurable, vision-threatening, genetic disease. In this study, we aimed to reveal the real-world burden of this disease from the viewpoint of retina specialists and geneticists involved directly in XLRP care and to identify unique insights that may not otherwise be available through typical clinical studies or health economic research. In this exploratory, cross-sectional study (EXPLORE XLRP-1), retina specialists (n = 20) and geneticists (n = 5) in France, Germany, Italy, Spain, and the UK provided anonymized insights on their experiences managing patients with XLRP (n = 80) via an online survey and 60-min telephone interview. Survey respondents reported that patient independence decreased over time, where 37% of patients were considered "completely autonomous" at diagnosis versus 23% at the last consultation. At their last visit, 45% of patients were active in the workforce; 67% (12/18) of "completely autonomous" patients had active working status compared with 13% (1/8) of "completely dependent" patients. The average time from onset of symptoms to diagnosis was 4years and varied among countries. In 78% of patients, XLRP was confirmed by genetic testing, the rate of which varied among countries (range, 50-94%), taking up to 6months to receive results. Specialists identified unmet needs in XLRP management including more standardized assessments of quality of life (QoL) as well as easier and earlier access to specialists, genetic testing, patient support programs, and effective treatment options. The diagnosis, genetic testing, and management pathways among patients with XLRP can vary considerably. There is a need for more standardized diagnosis and management pathways, and QoL assessments, due to the major impact that XLRP has on patients' lives.

Impact of patient support programmes among patients with severe asthma treated with biological therapies: a systematic literature review and indirect treatment comparison

IntroductionEffective treatment of severe asthma requires patient adherence to inhaled and biological medications. Previous work has shown that patient support programmes (PSP) can improve adherence in patients with chronic diseases,...

Prescribing Practices and Barriers of Biologics for Chronic Rhinosinusitis Amongst Otolaryngologists.

Biologics for chronic rhinosinusitis with nasal polyposis (CRSwNP) are an evolving therapeutic option, but there are limited data on physician experiences in prescribing them. The goal of this study was to gain a better understanding of these experiences including prescribing practices, patient factors which guide prescriber decision, and physician and patient-reported issues which might limit cost-effectiveness of these therapies. A survey was distributed to attending otolaryngologists using the Canadian Society of Otolaryngology (CSOHNS) email distribution and eSurvey program. Responses were tabulated for the entire cohort and compared between rhinologists and non-rhinologists where appropriate. Frequencies and proportions were expressed as a percentage of total respondents. Fisher's exact test was used for statistical analysis between groups. Seventy-nine total survey responses were recorded representing a response rate of 43%. Significantly more rhinologists reported prescribing biologic medications on their own (100% vs. 50%; p < 0.001) and a higher proportion (1 to 10% vs. <1%) of their patients were on biologics compared with non-rhinologists (p = 0.023). Rhinologists were more likely to consider poor response to medical therapies, need for rescue steroids, and comorbid type 2 conditions in their decision to pursue biologics than non-rhinologists, but they also experienced poorer assistance from patient support programs and less availability to medications. Rhinologists are more comfortable with prescribing and managing biologics for CRSwNP compared with non-rhinologist colleagues. Clinicians prescribing biologic medications for CRSwNP should be familiar with guidelines, indications, and potential adverse events. N/A Laryngoscope, 134:3493-3498, 2024.

Real-World evidence revelations: The potential of patient support programmes to provide data on medication usage.

Patient Support Programmes (PSPs) are used by the pharmaceutical industry to provide education and support to consumers to overcome the challenges they face managing their condition and treatment. Whilst there is an increasing number of PSPs, limited information is available on whether these programmes contribute to safety signals. PSPs do not have a scientific hypothesis, nor are they governed by a protocol. However, by their nature, PSPs inevitably generate adverse event (AE) reports. The main goal of the research was to gather all Novartis-initiated PSPs for sacubitril/valsartan, followed by research in the company safety database to identify all AE reports emanating from these PSPs. Core data sheets (CDS) were reviewed to assess if these PSPs contributed to any new, regulatory-authority approved, validated signals. Overall, AEs entered into the safety database from PSPs confirmed no contribution to CDS updates. Detailed review of real-world data revealed tablet splitting or taking one higher dose tablet a day instead of twice daily. This research, and subsequent analyses, revealed that PSPs did not impact safety label changes for sacubitril/valsartan. It revealed an important finding concerning drug utilisation i.e. splitting of sacubitril/valsartan tablets to reduce cost. This finding suggests that PSPs may contribute important real-world data on patterns of medication usage. There remains a paucity of literature available on this topic, hence further research is required to assess if it would be worth designing PSPs for collecting data on drug utilisation and (lack of) efficacy. Such information from PSPs could be important for all stakeholders.

PCR213 Bridging the Practice to Theory Gap: Uncovering and Addressing Barriers and Facilitators to Evaluation of Patient Support Programs by the Pharmaceutical Industry

PCR213 Bridging the Practice to Theory Gap: Uncovering and Addressing Barriers and Facilitators to Evaluation of Patient Support Programs by the Pharmaceutical Industry

Prevalence and nature of manufacturer-sponsored patient support programs for prescription drugs in Canada: a cross-sectional study.

Globally, pharmaceutical companies offer patient support programs in tandem with their products, which aim to enhance medication adherence and patient experience through education, training, support and financial assistance. We sought to identify the proportion and characteristics of such patient support programs in Canada and to describe the nature of supports provided. We conducted a crosssectional study to identify and characterize all marketed prescription drugs available in Canada as of Aug. 23, 2022, using the Health Canada Drug Product and CompuScript databases. To describe the nature of supports provided, we conducted a content analysis of publicly available patient support program websites and Web-based documents. Using logistic regression, we identified characteristics of drugs associated with having a patient support program including brand-name or branded generic (generic medications with a proprietary name), orphan (medications for rare diseases) or biologic drug status; estimated total cost of prescriptions dispensed at retail pharmacies; and price per unit. Of the 2556 prescription drugs marketed by 89 companies in the study period, 256 (10.0%) had a patient support program in Canada. Many of the 89 drug manufacturers (n = 55, 61.8%) offered at least 1 patient support program, frequently relying on third-party administrators for delivery. Brandname and branded generic medications, biologic agents and drugs with orphan status were more likely to have a patient support program than generic drugs. Compared with drugs priced $1.01-$10.00 per unit, drugs priced $10.01-$100.00 per unit were nearly 8 times more likely to have a patient support program (adjusted odds ratio 7.54, 95% confidence interval 4.07- 14.64). Most sampled patient support programs included reimbursement navigation (n = 231, 90.2%) and clinical case management (n = 223, 87.1%). About 1 in 10 drugs marketed in Canada has a manufacturersponsored patient support program, but these are concentrated around brand-name, branded generic, biologic and high-cost drugs, often for rare diseases. To understand the impact of patient support programs on health outcomes and sustainable access to cost-effective medicines, greater transparency and independent evaluation of patient support programs is necessary.

Characteristics of patients initiating PCSK9i mAb following myocardial infarction and comparability of treatment groups in the Netherlands

Abstract Background The clinical benefits of lipid lowering treatment (LLT) for reducing risk of atherosclerotic cardiovascular disease (ASCVD) are well established. Recent findings support early initiation of proprotein convertase subtilisin/kexin type 9 inhibitors monoclonal antibodies (PCSK9i mAb) to maximize clinical benefit. However, when comparing treatment effects in a real-world setting, it is important to establish comparability of treatment groups and assess and adjust for confounding. Purpose To compare clinical characteristics and LLT use in patients initiating and not initiating PCSK9i mAb within 365 days following a myocardial infarction (MI). Methods MI events occurring in patients ≥18 years between 1 April 2016 and 31 December 2020 were identified in PHARMO Database Network, a population-based network of electronic healthcare databases linking data from general practitioners, out-patient and in-patient pharmacies and hospitals in the Netherlands. The database has about 3.3 million patients, representative of the Dutch population with respect to age and sex albeit with slight over-representation of those &amp;gt;80 years old. Characteristics of patients were presented by treatment groups: initiating PCSK9i mAb and not initiating PCSK9i mAb within 365 days post-MI. Characteristics and LLT use in the two treatment groups was evaluated. Results Of the 28,975 MI events, 157 (0.5%) initiated a PCSK9i mAb within 365 days. Patients who initiated a PCSK9i mAb within 365 days post-MI were younger than those who did not (median age of 63 versus 69 years), more likely to have a history of ASCVD prior to the MI event (56% versus 39%) and dyslipidaemia (55% versus. 28%), while non-initiators were more likely to have diabetes mellitus, chronic kidney disease and atrial fibrillation (Table). Patients who initiated PCSK9i mAb within 365 days post-MI had higher low-density lipoprotein cholesterol levels (3.7 versus 2.9 mmol/L), higher use of ezetimibe (25% versus 4%) and high-intensity statins (15% vs 11%, Figure). Conclusions In the Netherlands, despite being at very high risk of recurrent ASCVD, based on this dataset excluding Patient Support Programs, fewer than 1% of patients initiated a PCSK9i mAb within 365 days post-MI. Further analyses are needed to reveal if these treatment groups are comparable to assess differences and uncontrolled confounders in cardiovascular outcomes in the real world.

Data collection within patient support programs in Canada and implications for real-world evidence generation: the authors' perspective.

Patient support programs (PSPs) offer a unique opportunity to collect real-world data that can contribute to improving patient care and informing healthcare decision making. In this perspective article, we explore the collection of data through PSPs in Canada, current advances in data collection methods, and the potential for generating acceptable real-world evidence (RWE). With PSP infrastructure already in place for most specialized drugs in Canada, adding and strengthening data collection capacities has been a focus in recent years. However, limitations in PSP data, including challenges related to quality, bias, and trust, need to be acknowledged and addressed. Forward-thinking PSP developers have been taking steps to strengthen the PSP datasphere, such as engaging third parties for data analysis, publishing peer-reviewed studies that utilize PSPs as a data source and incorporating quality controls into data collection processes. This article illustrates the current state of PSP data collection by examining six PSP RWE studies and outlining their data characteristics and the health outcomes collected from the PSP. A framework for collecting real-world data within a PSP and a checklist to address issues of trust and bias in PSP data collection is also provided. Collaboration between drug manufacturers, PSP vendors, and data specialists will be crucial in elevating PSP data to a level acceptable to healthcare decision makers, including health technology assessors and payers, with the ultimate beneficiary being patients.

The Home Care Delivery Program in Hemophilia: A Descriptive Italian Multicentric Study on Patients, Caregivers, and Clinicians’ Points of View

BACKGROUND: For patients affected by haemophilia, Patient Support Programs (PSPs) may be a support tool to assist patients and physicians in optimising treatment and improving disease management. PSP on the Pharmacokinetics (PK) service in Italy aims to support haemophilia A or B patients. MATERIALS AND METHODS: This report analyses data of patients and physicians who benefited from the PK program from October 2018 to October 2022. Data was collected by a web-based questionnaire and by telephone calls. We provide a descriptive report on the benefits of participation in the PK program for patients with haemophilia and medical professionals involved in their care. RESULTS: In total, 69.6% of the respondent patients stated they were very satisfied with the Program, and 97.7% said they would benefit from the service again. Among the interviewed physicians, 60% felt satisfied with the Program and thought it was helpful. CONCLUSION: Patient satisfaction remained consistently high, with sustained improvements in all aspects of life. Medical professionals also reported positive outcomes in their patient interactions and satisfaction with the Program. PSPs have empowered patients to manage their pathology, increasing their satisfaction with treatments and quality of life.

Satisfaction with injection experience of patients with neuroendocrine tumors enrolled on lanreotide autogel patient support programs: Results from the international HomeLAN survey.

Lanreotide autogel/depot (LAN) is a somatostatin analog used in first-line treatment for neuroendocrine tumors (NETs). The aim of HomeLAN was to evaluate the satisfaction with injection experience among patients with NETs receiving at-home LAN injection via patient support programs (PSPs). This was an international, non-interventional, cross-sectional, online survey in adults with NETs enrolled in PSPs, receiving LAN injections at home, administered by a healthcare professional (HCP) or administered independently (self or caregiver administering injection). The primary endpoint was satisfaction with the most recent LAN injection. Secondary endpoints included the level of anxiety prior to injection, impact on daily life, and the extents to which participants felt in control of their life and agreed that home administration met their medical needs. In total, 111 participants from Belgium, Greece, the Netherlands, and Spain completed the survey (50.5% male; mean age, 63.6 years; most common primary tumor site was intestine [47.7%]). For 99 participants, their most recent injection was administered by an HCP. Overall, 95.5% of all participants were satisfied with their most recent injection experience (95% confidence interval: 89.89%-98.06%); 67% reported experiencing no anxiety prior to injection, 91.0% reported that home injection had a "great deal" or "quite a bit" of positive impact on their daily life, and 85.6% strongly agreed that the PSP met their medical needs. In the HCP injection subgroup, 71.7% reported that this mode of administration helped them to feel in control of their lives. In this patient survey, satisfaction levels were high among patients with NETs receiving LAN injections at home via a LAN PSP. Most patients did not experience anxiety prior to their most recent injection and acknowledged that thanks to their treatment they had a good quality of life despite their disease. Most strongly agreed that the PSP met their medical needs, which highlights the valuable service that LAN PSPs provide for patients with NETs.

Descriptive study of a clinical and educational telemedicine intervention in patients with diabetes receiving glargine 300 U/ml (Toujeo) in Spain: results of the T-Coach programme.

Diabetes is one of the most prevalent chronic diseases worldwide, and innovative patient support programmes can help and inform patients about their disease and improve their quality of life. The purpose of this study was to evaluate the effect of the T-Coach programme in terms of improvement of disease knowledge, self-management and adherence to treatment in a real-world setting in Spain between July 2016 and October 2018. We analyzed data from the T-Coach programme, a telephone platform that gives support to patients with type 2 diabetes mellitus treated with insulin glargine 300 U/ml (Gla-300). Support was provided by diabetes care nurses. Patients followed their treatment and aimed to achieve fasting blood glucose targets through diabetes education. A total of 479 patients were included in the programme. The mean (SD) dose of Gla-300 was 28.5 (16.3) U at baseline and 31.8 (16.1) U, 31.4 (16.4) U and 32.2 (16.3) U, respectively, at 3, 6 and 12 months. A satisfaction survey was completed by 240 (50.1%) patients, who, on average, were very highly satisfied with the programme, general assistance provided, recommendations received, and calls from nurses. T-Coach could be an effective tool to help patients achieve their optimal dose of Gla-300 insulin and manage their blood glucose levels. It could also act as an effective support for diabetes education.

Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs.

Social determinants of health (SDOH) are important contributors to health outcomes, and better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical. Characterizing SDOH burden can help improve the design of patient support programs (PSPs), using targeted approaches to remove barriers to access. This study used a mixed-methods strategy employing a quantitative survey, which was designed based on qualitative interviews, to understand the unmet needs and awareness/utilization of PSPs among individuals living with generalized myasthenia gravis (gMG) and experiencing SDOH barriers. The survey was completed by 38 individuals living with gMG, of which the majority were non-White/Caucasian, unemployed, low income, and enrolled in public insurance. Common SDOH challenges, awareness/utilization of available PSPs, and unmet needs were identified. Financial and mental health concerns were the most common among individuals living with gMG and experiencing SDOH barriers throughout diagnosis, accessing treatment, initiating treatment, and continuing treatment. Awareness and utilization of existing support services were low, especially when accessing treatment. Educational, financial, and personalized support with high "human touch" were commonly perceived as the most valuable resources. To better serve the needs of individuals with gMG experiencing SDOH barriers, PSPs should use a targeted approach to offer services tailored to harder-to-reach populations. Further, providers, advocacy groups, manufacturers, and public organizations in the gMG ecosystem should strengthen collaborations with PSPs to enable individuals living with gMG to access the services they need to improve their health outcomes.

An Augmented Reality Mobile App (Easypod AR) as a Complementary Tool in the Nurse-Led Integrated Support of Patients Receiving Recombinant Human Growth Hormone: Usability and Validation Study

Children with growth hormone deficiency face the prospect of long-term recombinant human growth hormone (r-hGH) treatment requiring daily injections. Adherence to treatment is important, especially at treatment initiation, to achieve positive health outcomes. Historically, telenursing services embedded in patient support programs (PSPs) have been a valid approach to support r-hGH treatment initiation and patient education and facilitate adherence by identifying and optimizing appropriate injection techniques. The development of mobile phones with augmented reality (AR) capabilities offers nurses new tools to support patient education. To investigate experiences among nurses of a new mobile phone app developed to support patient training with a phone-based PSP for r-hGH treatment. In 2020, the Easypod AR mobile app was launched to support nurse-driven telehealth education for patients initiating r-hGH therapy with the Easypod electromechanical auto-injector device. Nurses who were part of PSPs in countries where the Easypod AR app had been launched or where training was provided as part of an anticipated future launch of the app were invited to participate in an online survey based on the Mobile App Rating Scale to capture their feedback after using the app. In total, 23 nurses completed the online questionnaire. They positively rated the quality of the app across multiple dimensions. The highest mean scores were 4.0 for engagement (ie, adaptation to the target group; SD 0.74), 4.1 (SD 0.79) for functionality (navigation) and 4.1 (SD 0.67) for aesthetics (graphics). Responses indicated the potential positive impact of such a tool on enhancing patient education, patient support, and communication between patients and PSP nurses. Some participants also suggested enhancements to the app, including gamification techniques that they felt have the potential to support the formation of positive treatment behaviors and habits. This study highlights the potential for new digital health solutions to reinforce PSP nurse services, including patient education. Future studies could explore possible correlations between any behavioral and clinical benefits that patients may derive from the use of such apps and how they may contribute to support improved patient experiences and treatment outcomes.

Evolution of Quality of Life and Treatment Adherence after One Year of Intermittent Bladder Catheterisation in Functional Urology Unit Patients.

To determine patient difficulties and concerns when performing IBC (Intermittent Bladder Catheterisation), as well as the evolution of adherence, quality of life, and emotional state of patients one year after starting IBC. A prospective, observational, multicentre study conducted in 20 Spanish hospitals with a one-year follow-up. Data sources were patient records and the King's Health Questionnaire on quality of life, the Mini-Mental State Examination (MMSE), and the Hospital Anxiety and Depression Scale (HADS). Perceived adherence was measured using the ICAS (Intermittent Catheterization Adherence Scale) and perceived difficulties with IBC were assessed using the ICDQ (Intermittent Catheterization Difficulty Questionnaire). For data analysis, descriptive and bivariate statistics were performed for paired data at three points in time (T1: one month, T2: three months, T3: one year). A total of 134 subjects initially participated in the study (T0), becoming 104 subjects at T1, 91 at T2, and 88 at T3, with a mean age of 39 years (standard deviation = 22.16 years). Actual IBC adherence ranged from 84.8% at T1 to 84.1% at T3. After one year of follow-up, a statistically significant improvement in quality of life (p ≤ 0.05) was observed in all dimensions with the exception of personal relationships. However, there were no changes in the levels of anxiety (p = 0.190) or depression (p = 0.682) at T3 compared to T0. Patients requiring IBC exhibit good treatment adherence, with a significant proportion of them performing self-catheterisation. After one year of IBC, a significant improvement in quality of life was noted, albeit with a significant impact on their daily lives and their personal and social relationships. Patient support programmes could be implemented to improve their ability to cope with difficulties and thus enhance both their quality of life and the maintenance of their adherence.

High Adherence and Minimal Delays of Year 2 Treatment in People with Multiple Sclerosis Treated with Cladribine Tablets: Results from Multi-Country Patient Support Programmes

High Adherence and Minimal Delays of Year 2 Treatment in People with Multiple Sclerosis Treated with Cladribine Tablets: Results from Multi-Country Patient Support Programmes

Persistenz-Probleme bei Patient:innen mit rheumatoider Arthritis: Wie können Patient:innenunterstützungsprogramme (PSP) helfen?

The authors analyse the problem of low persistence in patients with rheumatoid arthritis and discuss the rationale and potential benefits of patient support programs.