RESUMO
PURPOSE: Continuous lenalidomide maintenance treatment after autologous stem cell transplantation delivers improvement in progression free and overall survival among newly diagnosed multiple myeloma patients and has been the standard of care in the UK since March 2021. However, there is scant information about its impact on patients' day-to-day lives. This service evaluation aimed to qualitatively assess patients receiving lenalidomide treatment at a cancer centre in London, in order that the service might better align with needs and expectations of patients. METHODS: We conducted 20 semi-structured interviews among myeloma patients who were on continuous lenalidomide maintenance treatment at a specialist cancer centre in London. Members of the clinical team identified potentially eligible participants to take part, and convenience sampling was used to select 10 male and 10 female patients, median age of 58 (range, 45-71). The median treatment duration was 11 months (range, 1-60 months). Participants were qualitatively interviewed following the same semi-structured interview guide, which was designed to explore patient experience and insights of lenalidomide. Reflexive thematic analysis was used for data analysis. RESULTS: Four overarching themes were as follows: (i) lenalidomide: understanding its role and rationale; (ii) reframing the loss of a treatment-free period to a return to normal life; (iii) the reality of being on lenalidomide: balancing hopes with hurdles; (iv) gratitude and grievances: exploring mixed perceptions of care and communication. Results will be used to enhance clinical services by tailoring communication to better meet patients' preferences when making treatment decisions. CONCLUSION: This study highlights that most patients feel gratitude for being offered continuous lenalidomide and perceive it as alleviating some fears concerning relapse. It reveals variations in side effects in different age groups; younger patients reported no/negligible side effects, whilst several older patients with comorbidities described significant symptom burden, occasionally leading to treatment discontinuation which caused distress at the perceived loss of prolonged remission. Future research should prioritise understanding the unique needs of younger patients living with multiple myeloma.
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Lenalidomida , Mieloma Múltiplo , Pesquisa Qualitativa , Humanos , Mieloma Múltiplo/tratamento farmacológico , Mieloma Múltiplo/psicologia , Mieloma Múltiplo/terapia , Lenalidomida/uso terapêutico , Lenalidomida/administração & dosagem , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Londres , Quimioterapia de Manutenção/métodos , Entrevistas como Assunto , Qualidade de Vida , Transplante Autólogo/métodos , Antineoplásicos/uso terapêutico , Antineoplásicos/administração & dosagemRESUMO
BACKGROUND: Individuals living with and beyond cancer are at heightened risk of adverse psychological and social outcomes and experiences. In March 2020, the COVID-19 global pandemic presented a unique set of social circumstances with the potential to exacerbate the challenges faced by this population. The purpose of this study was to investigate the experiences of people living with and beyond cancer during the first year of the COVID-19 pandemic and assess the impact on psychological and social aspects of their lives. METHODS: From a pool of participants from a larger health behaviours study thirty participants were purposively sampled for characteristics including: diagnostic group (breast, prostate and colorectal cancers), gender, time since diagnosis and age. Semi-structured interviews were conducted via telephone to discuss their experience of living through the pandemic. A thematic analysis was conducted using a needs-based approach to detail the fundamental needs expressed by this population in relation to their mental health and quality of life during the pandemic. RESULTS: Three fundamental needs underpinned the experiences expressed by participants: the need to feel safe; particularly in relation to risk of contracting COVID-19 and their ongoing cancer monitoring; the need to feel connected; to the people, places, activities and practices of everyday life; and the need to make the most out of life; specifically in context of having already endured cancer and cancer treatment. Participant experiences are described in relation to how they impacted each of these three needs. CONCLUSIONS: People living with and beyond cancer have past and ongoing experiences that make them vulnerable to adverse psychosocial reactions and outcomes. Support for this population needs to provide greater clarity of risk, clearer guidelines specific to their personal circumstances, and regular updates on scheduling of important follow up care and monitoring.
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COVID-19 , Neoplasias Colorretais , Masculino , Humanos , Qualidade de Vida , Saúde Mental , Próstata , COVID-19/epidemiologia , Pandemias , Neoplasias Colorretais/epidemiologiaRESUMO
INTRODUCTION: Increased moderate to vigorous physical activity (MVPA) can improve clinical and psychosocial outcomes for people living with and beyond cancer (LWBC). This study aimed to assess the feasibility and acceptability of trial procedures in a pilot randomised controlled trial (RCT) of a theory-driven app-based intervention with behavioural support focused on promoting brisk walking (a form of MVPA) in people LWBC (APPROACH). METHODS: Participants diagnosed with breast, prostate or colorectal cancer were recruited from a single UK hospital site. Assessments at baseline and 3 months included online questionnaires, device-measured brisk walking (activPAL accelerometer) and self-reported weight and height. Participants were randomised to intervention or control (care as usual). The intervention comprised a non-cancer-specific app to promote brisk walking (National Health Service 'Active 10') augmented with print information about habit formation, a walking planner and two behavioural support telephone calls. Feasibility and acceptability of trial procedures were explored. Initial estimates for physical activity informed a power calculation for a phase III RCT. A preliminary health economics analysis was conducted. RESULTS: Of those medically eligible, 369/577 (64%) were willing to answer further eligibility questions and 90/148 (61%) of those eligible were enrolled. Feasibility outcomes, including retention (97%), assessment completion rates (>86%) and app download rates in the intervention group (96%), suggest that the trial procedures are acceptable and that the intervention is feasible. The phase III RCT will require 472 participants to be randomised. As expected, the preliminary health economic analyses indicate a high level of uncertainty around the cost-effectiveness of the intervention. CONCLUSIONS: This pilot study demonstrates that a large trial of the brisk walking intervention with behavioural support is both feasible and acceptable to people LWBC. The results support progression onto a confirmatory phase III trial to determine the efficacy and cost-effectiveness of the intervention.