We identified five common stages experienced by patients with CML and suggest several recommendations for HCPs on the management of patients through their disease journey. By providing support, education, and reassurance, HCPs can help patients as they move through the early stages of crisis and hope. When patients are in the adaptation and new-normal stages, HCPs can help patients achieve and maintain a new normality by setting expectations for the risks/benefits of long-term chronic drug therapy and disease monitoring and by continuing to support patient adherence.

BACKGROUND-Dietary lycopene combined with other constituents from whole tomatoes was previously found to have greater chemopreventive effects against prostate cancer as compared to pure lycopene provided in a beadlet formulation. We hypothesized that tomato paste would have greater chemopreventive effects in transgenic adenocarcinoma of the mouse prostate (TRAMP) mice relative to equivalent lycopene doses provided from lycopene beadlets.

PurposeThe tyrosine kinase inhibitor (TKI) imatinib has improved outcomes for patients with unresectable or metastatic gastrointestinal stromal tumors (GIST), and for patients receiving adjuvant therapy following GIST resection. This qualitative study explored the experiences and emotions of patients through GIST diagnosis, treatment initiation, disease control, and in some patients, loss of response and therapy switch.Patients and methodsEthnographic investigations were conducted, including semi- structured qualitative interviews of patients with resected or metastatic/unresectable GIST and their caregivers, from Canada (n = 15); the United States (n = 10); and Brazil, France, Germany, Russia, and Spain (n = 5 each). Some interviewees also kept 7-day photo journals. Responses were qualitatively analyzed to identify gaps and unmet needs where communication about disease, treatments, and adherence could be effective.ResultsPatients shared common experiences during each stage of disease management (crisis, hope, adaptation, new normal, and uncertainty). Patients felt a sense of crisis during diagnosis, followed by hope upon TKI therapy initiation. Over time, they came to adapt to their new lives (new normal) with cancer. With each follow-up, patients confronted the uncertainty of becoming TKI resistant and the possible need to switch therapy. During uncertainty many patients sought new information regarding GIST. Cases of disease progression and drug switching caused patients to revert to crisis and restart their emotional journey. Patients with primary or unresectable/metastatic GIST shared similar journeys, especially regarding uncertainty, although differences in the scope and timing of phases were observed. Strategies patients used to remain adherent included obtaining family support, setting reminder mechanisms, taking medicine at routine times, and storing medicine in prominent places.ConclusionsPhysicians and support staff can manage patient expectations and encourage adherence to therapy, which may facilitate optimal patient outcomes. Patient education about current GIST developments and adherence across all phases of the patient journey are of benefit.

BackgroundLimited data are available on the experiences of patients with autoinflammatory diseases (AIDs) and their families along the path to diagnosis and treatment. We sought to describe these experiences in patients with AIDs including tumor necrosis factor receptor-associated periodic syndrome (TRAPS), mevalonate kinase deficiency/hyperimmunoglobulin D syndrome (MKD/HIDS), and familial Mediterranean fever (FMF).MethodsNinety-minute, semi-structured qualitative interviews and 5-day written/video diaries were used to gather information on the experiences of patients with AIDs and their families.ResultsTwelve families of patients from the US (TRAPS [n = 4], MKD/HIDS [n = 5], FMF [n = 5]) participated in this study from August to November 2015. The study included two families with multiple afflicted siblings. Patients’ ages ranged from 1 to 28 years. Most parents reported realizing that something was seriously wrong with their child after medical emergencies and/or hospitalizations, which initiated the difficult path to diagnosis. For most, the process included multiple specialist visits, extensive and repeated testing, and many misdiagnoses. Over time, 92% of parents reported losing confidence in the healthcare system’s ability to find an answer to their child’s symptoms, while they also struggled with unsupportive school personnel and dismissive friends and relatives. Patients and their parents reported holding on to memories of “what life was like” before the onset of symptoms and mourning their subsequent loss of “normalcy.” Even after diagnosis, patients and parents continued to feel uncertain about what to expect in the future.ConclusionsAll families emphasized the need for efficient early diagnosis of AIDs. Initiatives that improve the speed and accuracy of diagnosis, provide more comprehensive patient education, and support patients and families through the illness have the potential to significantly improve the quality of life of patients with AIDs and their families. Healthcare providers should be aware of the impact of the long diagnostic journey on families and work to create an environment of trust and collaboration in the face of a difficult and prolonged diagnostic process.Electronic supplementary materialThe online version of this article (10.1186/s13023-018-0902-7) contains supplementary material, which is available to authorized users.

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