Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.

Patients, life science industry and regulatory authorities are united in their goal to reduce the disease burden of patients by closing remaining unmet needs. Patients have, however, not always been systematically and consistently involved in the drug development process. Recognizing this gap, regulatory bodies worldwide have initiated patient-focused drug development (PFDD) initiatives to foster a more systematic involvement of patients in the drug development process and to ensure that outcomes measured in clinical trials are truly relevant to patients and represent significant improvements to their quality of life.

A Mixed-Methods Study to Better Measure Patient-Reported Pain and Fatigue in Soft Tissue Sarcoma.

Introduction: Pain and fatigue are commonly reported by patients with soft tissue sarcoma (STS) as distressing symptoms, yet no patient-reported outcome (PRO) measures have been validated or developed specifically for STS. This study aimed to develop novel PRO scales using existing item banks to measure pain and fatigue in STS.

Methods: A three-stage mixed-methods approach was used.

Measuring the Patient Experience in Rare Disorders: Benefit of Pragmatic Mixed-Methods Research in NUT Carcinoma.

Introduction: Patient-centered outcome measurement (PCOM) is essential to capture the outcomes important to patients. However, it presents unique challenges in rare diseases, particularly those that are "young" (not diagnosed before the twenty-first century), with limited literature, lack of disease-specific patient-reported outcome (PRO) measures, and difficult sampling and data collection. One example of this is NUT (nuclear protein in testis) carcinoma (NUTca), a rare and rapidly progressing cancer, with tumors preliminary in the head, neck, and lungs.

Understanding the Patient Experience in NUT Carcinoma: Qualitative Interviews with Patients and Caregivers to Develop a Conceptual Framework.

Introduction: NUT (nuclear protein of the testis) carcinoma (NUTca) is a rare and aggressive cancer that is genetically hallmarked by a chromosomal abnormality in the NUT gene, and presents with tumors in the head, neck, and lungs. Currently there is no standard of care, but patients may undergo surgery, radiation, and/or chemotherapy. There is a lack of published research describing the patient experience of NUTca.

Validation of the Dutch version of the primary care resources and support for self-management tool: A tool to assess the quality of self-management support.

Introduction: Enhancing the self-management activities of patients improves the quality of care and is an integrated element of current healthcare provision. However, self-management support (SMS) is not yet common in healthcare. The Primary Care Resources and Support for Self-Management (PCRS) is a tool for healthcare professionals to assess the quality of SMS.

COPD depicted - patients drawing their lungs.

Background: Given the increasing importance of patient-reported outcomes (PRO) in quality medical care, we examined the value and feasibility of an innovative method for assessing patients' illness perceptions, represented in drawings made by patients with COPD of their lungs.

Aim: The aim of our study was: to study patients' representation of COPD as reflected in their drawings of their lungs; and to examine scores on a validated measure that assesses illness perceptions (ie, Brief Illness Perception Questionnaire [B-IPQ]).

Patients And Methods: One hundred outpatients with COPD, mean age 70 years, selected from a pharmacy database, participated and 98 filled out the B-IPQ.

Illness perceptions and coping determine quality of life in COPD patients.

Background: A key goal of chronic obstructive pulmonary disease (COPD) care is to improve patients' quality of life (QoL). For outcomes such as QoL, illness perceptions and coping are important determinants.

Aim: The primary aim was to assess the associations between illness perceptions, coping and QoL in COPD patients.