Dataset Information

Cardiotoxicity after cancer treatment: a process map of the patient treatment journey.

ABSTRACT: Background/aim:Cardiotoxicity is a potential complication of anticancer therapy. While guidelines have been developed to assist practitioners, an effective, evidence based clinical pathway for the treatment of cardiotoxicity has not yet been developed. The aim of this study was to describe the journey of patients who developed cardiotoxicity through the healthcare system in order to establish baseline data to inform the development and implementation of a patient-centred, evidence-based clinical pathway. Methods:Mixed-methods design with quantitative and qualitative components using process mapping at 3 large medical centres in 2 states between 2010 and 2015. Results:Fifty (50) confirmed cases of cardiotoxicity were reviewed (39 medical record reviews, 7 medical record review and interviews and 4 internview only). The mean age at cancer diagnosis of this group was 53.3?years (range 6-89?years); 50% female; 30% breast cancer, 23% non-Hodgkin's lymphoma; mean chemotherapy cycles 5.2 (median 6; range 1-18); 49 (89%) presented to chemotherapy with pre-existing cardiovascular risk factors; 39 (85%) had at least one modifiable risk factor and 11 (24%) had more than 4; 44 (96%) were diagnosed by echocardiogram and 27 (57%) were referred to a cardiologist (only 7 (15%) before chemotherapy). Post chemotherapy, 22 (48%) patients were referred to a multidisciplinary heart failure clinic; 8 (17%) to cardiac rehabilitation; 1 (2%) to cancer survivorship clinic and 10 (22%) to a palliative care service. There were 16 (34%) deaths during the timeframe of the study; 4 (25%) cardiac-related, 6 (38%) cancer-related, 4 (25%) due to sepsis and 2 (12%) other causes not recorded. The main concerns participants raised during the interviews were cancer professionals not discussing the potential for cardiotoxicity with them prior to treatment, nor risk modification strategies; a need for health education, particularly regarding risks for developing heart failure related to cancer treatment; and a lack of collaboration between oncologists and cardiologists. Conclusions:Our results demonstrate that the clinical management of cancer patients with cardiotoxicity was variable and fragmented and not patient centered. This audit establishes practice gaps that can be addressed through the design of an evidence-based clinical pathway for cancer patients with, or at risk, of cardiotoxicity.

SUBMITTER: Clark RA

PROVIDER: S-EPMC7048085 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Cardiotoxicity after cancer treatment: a process map of the patient treatment journey.

Clark Robyn A RA Marin Tania S TS McCarthy Alexandra L AL Bradley Julie J Grover Suchi S Peters Robyn R Karapetis Christos S CS Atherton John J JJ Koczwara Bogda B

Cardio-oncology (London, England) 20190822

<h4>Background/aim</h4>Cardiotoxicity is a potential complication of anticancer therapy. While guidelines have been developed to assist practitioners, an effective, evidence based clinical pathway for the treatment of cardiotoxicity has not yet been developed. The aim of this study was to describe the journey of patients who developed cardiotoxicity through the healthcare system in order to establish baseline data to inform the development and implementation of a patient-centred, evidence-based ...[more]

PMID: 32154020

Similar Datasets

Project description:BackgroundPatient journey maps are increasingly used as a tool that enables healthcare providers to refine their service provision to best meet patient needs. We developed a cervical dystonia patient journey map (CDPJM) that describes the holistic patient experience from pre-diagnosis through to long-term treatment.MethodsThe CDPJM was developed in 2 stages; a patient survey (open questions and multichoice) of 15 patients with CD was conducted to inform the design of the CDPJM, which was then refined and validated by an expert-patient focus group.ResultsQualitative analysis of the patient survey supported five key stages of the patient journey: symptom onset, diagnosis and therapeutic relationship with healthcare professionals, initiation of care for CD, start of CD treatment, and living with treated CD. Following symptom onset, survey respondents described having multiple visits to their family doctor who prescribed strong pain killers and muscle relaxants and referred their patient to up to 10 different specialists for diagnosis. Over half (53.3%) of respondents had received ≥ 1 misdiagnosis. Respondents reported relief at having a diagnosis but a lack of understanding of the prognosis and treatment options; 46.7% said their neurologist did not spend enough time addressing their concerns. Survey respondents reported using a variety of alternative sources of information, including the internet (86.7%), self-help groups (66.7%) and information leaflets provided by health care professionals (60.0%). While botulinum toxin (BoNT) was consistently discussed as the main treatment option, some neurologists also mentioned physiotherapy, counselling, and other complementary approaches. However, patients were often left to seek complementary services themselves. Patients reported a 'rollercoaster' of relief with BoNT treatment with symptoms (and subsequent impact on daily life) returning towards the end of an injection cycle. "When BoNT works well I can return to an almost normal life … when the injections stop working so well, I have to rest more and avoid going to work and experience life restrictions."ConclusionsWe present the first patient journey map for CD that can be used to guide local service mapping and to compare current provision with what patients say they want and need.

Project description: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.

Dataset Information

Cardiotoxicity after cancer treatment: a process map of the patient treatment journey.

Publications

Cardiotoxicity after cancer treatment: a process map of the patient treatment journey.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets