The broad aims of the present evaluation were, firstly, to describe the information and support needs of callers to a Cancer Helpline and, secondly, to describe the response of the service to these needs. A further aim was to use these results to develop strategies to improve the service. Anonymous caller information collected over a 6-year period was analysed. The setting of the study was the Cancer Helpline service operated by the Cancer Council Victoria within the state of Victoria, Australia. The caller profile was similar to that described in the literature, with the majority of callers being women, younger than the general cancer population and enquiring most commonly about breast cancer. Patients and their relatives called to obtain information about cancer diagnosis, treatment and management and to obtain psychological and emotional support. Callers received emotional support, were supplied with verbal and written information and were referred to a variety of support services. Some population groups are underrepresented in the data. Changes to the Helpline and other services over the 6-year period are described. The pattern of callers to the Cancer Helpline appears similar to that described in the USA and Europe. Many issues and challenges are common. The paper discusses additional strategies for meeting the information and support needs of those affected by cancer and describes current and suggested research areas.
BackgroundPatient engagement is an essential aspect in the research/development of biopharmaceutical products and disease management. Improving the lives of patients requires a deep understanding of their medical conditions, experiences, needs and priorities. However, a consistent definition of patient centricity is lacking. A series of initiatives was conducted to define patient centricity and its important principles impacting the biopharmaceutical industry.MethodsInterviews, questionnaires and literature reviews were conducted involving key stakeholders to initially identify issues of importance to patients, healthcare providers and payers. Subsequently, two identical workshops which included 22 patients/carers created a definition of patient centricity and the healthcare values important to patients/caregivers. Outputs were tested in a validation exercise involving patients in predominantly US (n=470) and European (n=703) patient forums.ResultsInitial research provided deeper understanding of patient needs and key topics of interest that were used to cocreate a definition of patient centricity and 10 associated principles of importance to the biopharmaceutical industry. Wider testing of these outputs among predominantly US/European patient communities confirmed their validity. Patient centricity should be defined as ‘Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family’. Important principles for patients focused on education/information, cocreation, access and transparency.ConclusionsThe development of a consistent definition of patient centricity and its associated principles provides an opportunity for biopharmaceutical companies to adopt and use these as a reference point for consistent patient engagement throughout the product life cycle.
Background IDEA 033 is a formulation of ketoprofen in Transfersome – ultra-deformable carriers – that is applied epicutaneously for the treatment of pain associated with OA, thus minimising the potential for systemic adverse events (AEs) associated with non-steroidal anti-inflammatory drugs (NSAIDs). Objectives To compare 3 doses of IDEA 033 (25mg, 50mg and 100mg ketoprofen in Transfersome gel) with orally administered naproxen and placebo for treating the signs and symptoms of OA of the knee. Methods A multicentre, randomised, double-blind, double-dummy, parallel-group, placebo- and active-controlled study in patients having radiographic evidence of OA in both knees for ≥6 mo and meeting ACR Functional Class I–III OA criteria. Patients had at least moderate pain (2) on a 5-point Likert scale when not taking NSAIDs at screening and met OA flare criteria at baseline [WOMAC pain subscale ≥40 mm (based on a normalised 0–100 mm VAS scale) and ≥15 mm greater than at screening]. Patients received 12 wks of therapy twice daily with 25mg, 50mg or 100mg ketoprofen in Transfersome plus oral placebo; epicutaneous placebo (Transfersome gel without ketoprofen; TDT 064) plus oral placebo (combined placebo); or oral 500mg naproxen plus TDT 064. WOMAC pain was assessed at baseline and wks 2, 4, 8 and 12. Patients’ response to therapy was measured on a 5-point Likert scale at wks 2, 6, 9 and 12. Results There were 837 patients in the intent-to-treat (ITT) and safety populations. Baseline median WOMAC pain subscale scores were high (Table). At 2 wks, all groups showed substantial decreases in pain with small changes in pain scores thereafter. The a priori hypothesis test (ITT population) showed no statistically significant improvement between ketoprofen in Transfersome and combined placebo. The naproxen plus TDT 064 arm was significantly superior to the ketoprofen in Transfersome arms and combined placebo arm. The combined placebo arm had the lowest rate of AEs (Table). Serious AEs were considered not/unlikely to be related to study treatment. Conclusions Epicutaneously applied ketoprofen (25mg, 50mg and 100mg) in Transfersome (IDEA 033) for 12 wks was not statistically superior to combined treatment with epicutaneous placebo (TDT 064) and oral placebo, possibly owing to the substantial change from baseline reported for the combination of TDT 064 and oral placebo, high baseline pain severity and high protocol violation/dropout rate (ITT population). All treatments were well tolerated. Investigation of the apparent beneficial effect of epicutaneous placebo (TDT 064) is ongoing. Disclosure of Interest M. Rother Shareholder of: IDEA AG (sponsor of the trial), Employee of: IDEA AG (sponsor of the trial) at the time of trial conduct, G. Yeoman: None Declared, E. Ekman Grant/Research support from: Funding for conduct of the clinical study was provided by IDEA
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