Prostate Cancer: A Couple’s Disease

Prostate Cancer: "A Couple's Disease" By Kathleen Hoffman, PhD, MSPH Prostate cancer impacts not just the physical health of the individual but also their emotional and social health. A study of patients and their partners compared satisfaction with treatment, worry about cancer, and the consequences of treatment on their relationship. Twenty-five percent said that their personal activities were negatively impacted by prostate cancer diagnosis and treatment and 42 percent reported their relationships with their partners, especially their sexual relationships, were negatively affected.1 Prostate cancer has been called a couple’s disease. A spouse posted in the ZERO [...]

New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers

New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers By Kathleen Hoffman, PhD MSPH Prostate cancer is highly treatable in its early stages, much less so once it has metastasized, where the five-year survival rate is below 30%. In search of more treatment options, a patient with advanced prostate cancer wrote on Inspire: I was diagnosed with prostate cancer in [date]. Have done virtually every procedure including the de Vinci surgery (cancer had gotten outside into my lymph nodes, so prostate was not removed), radiation, hormone treatments, and chemo therapy. Periodic bone scans showed the [...]

Merck’s Patient-Centric Clinical Trial Recruiting

Merck’s Patient-Centric Clinical Trial Recruiting By Kathleen Hoffman, PhD MSPH Merck boosts clinical trial recruitment with a patient-centric mindset Everyone in pharma knows that product success depends on the results of clinical trials -- but we don’t usually hear from the people who are involved in running them.  Recently, four Clinical Research Managers (CRM) from Merck (known as MSD outside the United States and Canada) discussed how Merck is overcoming the barriers to clinical trial recruitment by adopting a patient-centric process -- a model that affects their trials top to bottom, from design through implementation. Each of [...]

Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire

Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire By Kathleen Hoffman, PhD MSPH In October 2009, Us TOO Prostate Cancer partnered with Inspire to support men diagnosed with prostate cancer. Now, the Us TOO International Prostate Cancer Support Community on Inspire has over 23,000 members. Last year, almost 500 new discussions started in the area of treatment options, prompting over 5500 new replies. When patients and caregivers started 148 discussions about being newly diagnosed, they received more than 2500 replies from fellow patients, who supported and educated them. Patient and caregiver members often introduce themselves [...]

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020 By Jeff Terkowitz Lesley Gosden, a patient and patient advocate with Parkinson's disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port for infusions of GDNF directly into the brain of Parkinson’s patients, bypassing the blood-brain barrier. Ms. Gosden is one of those who experienced an enormous benefit from the GDNF: prior to her involvement in the trial, she was wheelchair bound. Afterwards, she could walk again. [...]

When It Comes to Clinical Trials, Patient Concerns Differ

When It Comes to Clinical Trials, Patient Concerns Differ By Kathleen Hoffman, PhD, MSPH In 2019, Inspire researched patients and caregivers feelings about, and understanding of, clinical trials. Over 1500 members (1644) participated: Members with arthritis, colorectal cancer, prostate cancer, psoriasis, ovarian cancer, sarcoidosis and scleroderma. The findings show that these groups have different understandings of and concerns about clinical trials. Sixteen percent of the participants had already participated in clinical trials. Another 15 percent had tried to participate in a clinical trial but 1) were not eligible, 2) the clinical trial was full or 3) [...]

What Do Patients and Caregivers Know about Immunotherapy?

What Do Patients and Caregivers Know about Immunotherapy? Inspire’s Immunotherapy Awareness and Perceptions Survey According to a 2012 study, patient activation means “having the knowledge, skills, and confidence to manage one’s health.”  The study confirmed that better health outcomes are typically associated with greater patient knowledge and activation.1  As the field of oncology continues to embrace personalized medicine with immuno-oncology and immunotherapy, patient activation is essential. Today, in a world with content flooding every single channel and device we own, consumers are either over-informed, or under-informed.  A wide range of information sources, ranging from news outlets to [...]