Patients' experience of menopausal symptoms post-chemotherapy treatment for gestational trophoblastic neoplasia.

PURPOSE: We aimed to explore patient's experience of chemotherapy-induced menopausal symptoms; to ascertain how patients tried to alleviate their symptoms and how health professionals supported them in order to identify current unmet needs. METHODS: We designed a retrospective cross-sectional exploratory study of a sample of 11 women who received multi-agent combination chemotherapy for Gestational Trophoblastic Neoplasia. Postal surveys using the Greene Climacteric Scale (GCS) questionnaire followed up by semi-structured telephone interviews were used. Framework analysis technique was used to generate descriptions of patient's experiences. RESULTS: Symptoms of feeling tired or lacking in energy, loss of interest in sex, muscle and joint pains and difficulty in concentrating affected participants the most. The menopausal symptoms appear to be temporary; symptoms such as hot flushes and night sweats seem to subside with resumption of menses. Others are more gradual with some evidence that mental health takes longer to recover. Regarding potential symptoms, some women do not retain the information given to them at discharge following end of treatment, which GTD services need to take into consideration when supporting patients. CONCLUSION: Patients need to be more optimally prepared for post-chemotherapy recovery with each patient's needs and support being individually tailored. How information is discussed and disseminated needs improving to ensure patients retain the information they receive at discharge. Recommendations include the creation of menopause information booklet, alongside further developing virtual nurse-led follow up clinics post chemotherapy.

Gestational Trophoblastic Disease: Best Practice Nursing Guidelines.

Background Clinical outcomes in gestational trophoblastic disease (GTD) are generally excellent, but GTD is a rare and complex condition that requires specialist information and support to offer a gold standard of care. Across Europe specialist nurses and/or midwives are increasingly common in the GTD multidisciplinary team to work alongside medical professionals in a holistic model of care, however the role is sometimes non-existent or can vary significantly between GTD centres. Objectives The aim of the European Organisation for Treatment of Trophoblastic Diseases' (EOTTD) is to harmonise best practice in Europe. To provide a basis for the European standardisation of best practice nursing care in GTD a group of European GTD nurses/midwives composed guidelines for minimal requirements and optimal nursing care of GTD patients. Methods Members of the EOTTD member countries with nursing representation attended multiple workshops, both virtual and in person, and guidelines were created by consensus and evidence where available. Outcome 16 nurses and 1 midwife from 4 (England, Ireland, Sweden and Netherlands) countries contributed. The group created flow diagrams for treatment and screening patients showing minimum and best practice nursing care for patients with GTD. Conclusion Despite the many different models of care and resources available to GTD services this consensus working group have provided a set of guidelines to drive forward a patient focused holistic model of care for GTD patients.

Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community.

BACKGROUND: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid. METHODS: Unlike any previous pandemic in history, online Covid communities and 'citizen science' have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020. RESULTS: The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life-changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option. CONCLUSIONS: Long Covid does not easily fit into the dominant evidence-based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship. PATIENT CONTRIBUTION: The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.

M-EA (methotrexate, etoposide, dactinomycin) and EMA-CO (methotrexate, etoposide, dactinomycin / cyclophosphamide, vincristine) regimens as first-line treatment of high-risk gestational trophoblastic neoplasia.

High-risk gestational trophoblastic neoplasia (GTN) is highly chemosensitive with an excellent prognosis with treatment. Historically in the United Kingdom, the high-risk regimens used have been M-EA (methotrexate, etoposide, dactinomycin) (Sheffield) and EMA-CO (methotrexate, etoposide, dactinomycin / cyclophosphamide, vincristine) (Charing Cross, London) with prior published data suggesting no difference in survival between these. Our Sheffield treatment policy changed in 2014, switching from M-EA to EMA-CO, aiming to reduce time in hospital, and harmonise UK practice. We aimed to report the toxicities, response rates and survival outcomes for 79 patients with high-risk GTN treated in the first-line setting with either M-EA (n = 59) or EMA-CO (n = 20) from 1998 to 2018. Median duration of treatment was similar (M-EA, 17.3 weeks (IQR 13.9-22.6) and 17.6 weeks (IQR 13.4-20.7) with EMA-CO. For M-EA, overall human chorionic gonadotrophin (hCG) complete response (CR) rate was 84.7% (n = 50/59). Two patients died of drug-resistant disease after several lines of multiagent chemotherapy; overall survival is 96.6% (median follow-up 10.4 years). For EMA-CO, overall hCG CR rate was 70%, overall survival is 100% (median follow-up 4 years). In our experience, patients treated with EMA-CO experienced an apparent increased incidence of neutropenia, non-neutropenic Grade 3-4 infection, peripheral neuropathy and more treatment delays and nights in hospital. Granulocyte-colony stimulating factor, after both EMA and CO arms, titrated to baseline neutrophil count improved the toxicity profile. Both treatment regimens are associated with excellent prognosis; selection of regimen may be further guided by individual patients' personal, social and family circumstances. There is further rationale to explore whether these regimens can be refined, such as 2-weekly EMA, to optimise patient experience and reduce toxicity while maintaining efficacy.

Systematic review of health-related quality of life and patient-reported outcome measures in gestational trophoblastic disease: a parallel synthesis approach.

Gestational trophoblastic disease is a rare complication of pregnancy that can develop into cancer. Medical outcomes of gestational trophoblastic disease are well researched, but the effect of the disease on health-related quality of life (HRQOL) requires attention if care is to be improved. This systematic review was designed to establish the effect of gestational trophoblastic disease and its treatment on HRQOL and to identify the appropriateness of HRQOL measures. Quantitative studies found HRQOL in long-term survivors of gestational trophoblastic disease to be at or above population norms. The disease had a negative effect on HRQOL for patients who experienced physical, psychological, and social sequelae related to the condition. Clinically significant levels of anxiety, depression, sexual dysfunction, and fertility-related distress were found in these patients. The results should be treated with caution because the evidence base was limited to small heterogeneous samples, data were retrospective, and a range of measures was used. Within qualitative studies on HRQOL for survivors of gestational trophoblastic disease, new conditions emerged, including nerve damage, fatigue, amenorrhoea, and grief. These areas are not captured in existing patient-reported outcome measures, and the content might not be valid for this population. Further qualitative research might lead to the development of a specific patient-reported outcome measure for gestational trophoblastic disease, providing reliable, meaningful, and valid assessments, and allowing longitudinal data to be obtained.

Experiences of Women With Gestational Trophoblastic Neoplasia Treated With High-Dose Chemotherapy and Stem Cell Transplantation: A Qualitative Study.

PURPOSE/OBJECTIVES: To explore the experiences of women with gestational trophoblastic neoplasia during and after treatment to understand their perspectives, priorities, and concerns.
. RESEARCH APPROACH: A descriptive, exploratory study using in-depth semistructured interviews.
. SETTING: All interviews were conducted in a quiet, designated room at Weston Park Hospital in Sheffield, South Yorkshire.
. PARTICIPANTS: Women with gestational trophoblastic neoplasia who had received stem cell transplantation from 2003 to 2013. Ten patients were eligible, and eight agreed to participate.
. METHODOLOGIC APPROACH: Interviews were carried out over the phone and were recorded and transcribed verbatim. Framework analysis was carried out to generate in-depth descriptions of participants' experiences.
. FINDINGS: Participants described significant physical, psychological, and social effects during and following treatment. Recovery was slow, and treatment had long-term effects on sexuality and body image. The impact of the women's diagnosis and treatment on their children was a primary concern.
. INTERPRETATION: The study provided insight into the multidimensional impact of stem cell transplantation, which can continue after treatment. The need for family-centered services for patients with dependent children was identified.
. IMPLICATIONS FOR NURSING: Nurses need to develop services that effectively communicate the challenges of stem cell transplantation to patients and provide family-centered care and late effects and rehabilitation services.

Evolution of a Teenage and Young Adult Service, in Sheffield, U.K., for Patients with Gestational Trophoblastic Neoplasia.

OBJECTIVE: To describe the evolution of a teenage and young adult (TYA) service for patients with gestational trophoblastic neoplasia (GTN). BACKGROUND: Since its opening in 2002 the TYA unit has demonstrated its effectiveness and ability to care for GTN patients, offering additional emotional assessment and meeting the specific needs that many young GTN patients have. Patients using the TYA unit were identified from the Centre's databases, and individual records were scrutinized for demographics, clinical presentation, barriers to care, compliance, and specific needs. RESULTS: Of the 121 GTN patients who have utilized the facilities, there were 94 complete moles, 11 choriocarcinomas, 3 placental site trophoblastic tumors, 1 twin molar pregnancy, and 4 with persistent unexplained hCG elevation. Presenting with a complicated social background was identified as a barrier to care in 8 patients. In addition to patients, 40 relatives and 12 infants have also utilized the facilities. A total of 33% of patients and carers had social work input and/or refer-ral to psychology services. CONCLUSION: The bespoke service and care offered to TYA patients is appropriate and should be considered the gold standard for young patients, enabling them to cope with their unique challenges during diagnosis and treatment.

Evolution of a specialist gestational trophoblastic disease service with a major nursing component: the Sheffield, United Kingdom, experience.

OBJECTIVE: To describe the evolution of a highly regarded and unique model of multidisciplinary care providing support, monitoring, and treatment for all gestational trophoblastic disease (GTD) patients referred to Sheffield Trophoblastic Disease Centre, 1 of the 3 United Kingdom (UK) supraregional GTD centers. BACKGROUND: The UK GTD service was first established in 1973 and since its inception has centralized care for GTD patients and played a leading international role in developing therapies, management protocols, and biomarker assays with good outcomes for patients. The service preceded recent trends towards centralization for rare cancers in the U.K. In Sheffield the GTD team has evolved to become a true multidisciplinary team with a strong nursing component, which is set to expand in the future. RESULTS: Centralization of care for GTD in the U.K. has been directly associated with the impressive results the service has achieved, with high cure rates (98-100%) and low (5-8%) chemotherapy rates. The addition of GTD nurse specialists has been beneficial to patients as they provide a communication link between patients and their clinicians and ensure that information, support, and advice is available for all GTD patients, both in hospital and at home. CONCLUSION: The UK GTD service is an internationally renowned, multidisciplinary organization. The service achieves impressive clinical results and now features a strong nursing component. The addition of nurse specialists has enabled the team to offer both clinical and psychological care and means that specialist advice is available for patients and healthcare professionals involved in giving care to this patient group.