ABSTRACT
BACKGROUND: The period between cancer diagnosis and surgery presents an opportunity for trials to assess the feasibility of behaviour change interventions. However, this can be a worrying time for patients and may hinder recruitment. We describe the perspectives of patients with excess weight awaiting colorectal cancer surgery about their recruitment into a randomised trial of a prehabilitation weight loss intervention. METHODS: We interviewed the first 26 participants from the 8 recruitment sites across England in the 'CARE' feasibility trial. Participants were randomised into either usual care (n = 13) or a low-energy nutritionally-replete total diet replacement programme with weekly remote behavioural support by a dietitian (n = 13). The semi-structured interviews occurred shortly after recruitment and the questions focused on participants' recollections of being recruited into the trial. We analysed data rapidly and then used a mind-mapping technique to develop descriptive themes. Themes were agreed by all co-authors, including a person with lived-experience of colorectal surgery. RESULTS: Participants had a mean body mass index (± SD) of 38 kg/m2 (± 6), age of 50 years (± 12), and 42% were female. People who participated in the trial were motivated by the offer of structured weight loss support that could potentially help them improve their surgical outcomes. However, participants also had concerns around the potential unpalatability of the intervention diet and side effects. Positive attitudes of clinicians towards the trial facilitated recruitment but participants were disappointed when they were randomised to usual care due to clinical teams' overemphasis on the benefits of losing weight. CONCLUSIONS: Patients were motivated to take part by the prospect of improved surgical outcomes. However, the strong preference to be allocated to the intervention suggests that balanced communication of equipoise is crucial to minimise disappointment from randomisation to usual care and differential dropout from the trial. CLINICAL TRIAL REGISTRATION: ISRCTN39207707, Registration date 13/03/2023.
Subject(s)
Colorectal Neoplasms , Qualitative Research , Humans , Female , Colorectal Neoplasms/surgery , Colorectal Neoplasms/psychology , Male , Middle Aged , Weight Loss , Patient Selection , Weight Reduction Programs/methods , Adult , England , Feasibility Studies , Body Mass IndexABSTRACT
INTRODUCTION: Treatment-resistant depression (TRD) is depression unresponsive to antidepressants and affects 55% of British primary care users with depression. Current evidence is from secondary care, but long referral times mean general practitioners (GPs) manage TRD. Studies show that people with depression use Twitter to form community and document symptoms. However, Twitter remains a largely unexplored space of documented patient experience. Twitter data could provide valuable insights into learning about primary care experiences of TRD. In this study, we explored Twitter comments and conversations about TRD and produced patient-driven recommendations. METHODS: Tweets from UK-based users were collected manually and using a browser extension in June 2021. Conventional content analysis was used to provide an overview of the Tweets, followed by interpretation to understand why Twitter may be important to people with TRD. RESULTS: A total of 415 Tweets were organised into five clusters: self-diagnosis, symptoms, support, small wins and condition experts. These Tweets were interpreted as showing Twitter as a community for people with TRD. People had a collective sense of illness identity and were united in their experiences of TRD. However, users in the community also highlighted the absence of effective GP care, leading users to position themselves as condition experts. Users shared advice from a place of lived experience with the community but also shared potentially harmful information, including recommendations about nonevidence-based medications. CONCLUSIONS: Findings illuminate the benefits of the TRD Twitter community and also highlight that the perception of a lack of knowledge and support from GPs may lead community members to advise nonevidenced-based medications. PATIENT AND PUBLIC CONTRIBUTION: This study was led by a person with lived experience of TRD and bipolar. Two public contributors with mental health conditions gave feedback on our study protocol and results.
Subject(s)
Mental Disorders , Social Media , Humans , Antidepressive Agents , Communication , DepressionABSTRACT
BACKGROUND: Most adults fail to achieve remission from common mental health conditions based on pharmacological treatment in primary care alone. There is no data synthesising the reasons. This review addresses this gap through a systematic review and thematic synthesis to understand adults' experiences using primary care for treatment-resistant mental health conditions (TRMHCs). We use the results to produce patient-driven recommendations for better support in primary care. METHODS: Eight databases were searched from inception to December 2020 for qualitative studies reporting research on people's experience with TRMHCs in primary care. We included the following common mental health conditions defined by NICE: anxiety, depression, panic disorder, post-traumatic stress, and obsessive-compulsive disorder. Two reviewers independently screened studies. Eligible studies were analysed using an aggregative thematic synthesis. RESULTS: Eleven studies of 4456 were eligible. From these eleven studies, 4 descriptive themes were developed to describe a cycle of care that people with TRMHCs experienced in primary care. In the first stage, people preferred to self-manage their mental health and reported barriers that prevented them from seeing a GP (e.g., stigma). People felt it necessary to see their GP only when reaching a crisis point. In the second stage, people were usually prescribed antidepressants, but were sceptical about any benefits they had to their mental health. In the third stage, people self-managed their mental health (e.g., by adjusting antidepressant dosage). The fourth stage described the reoccurrence of mental health and need to see a GP again. The high-order theme, 'breaking the cycle,' described how this cycle could be broken (e.g., continuity of care). CONCLUSIONS: People with TRMHCs and GPs could break the cycle of care by having a conversation about what to do when antidepressants fail to work. This conversation could include replacing antidepressants with psychological interventions like talking therapy or mindfulness.
Subject(s)
Antidepressive Agents , Mental Health , Adult , Antidepressive Agents/therapeutic use , Anxiety , Humans , Primary Health Care , Qualitative ResearchABSTRACT
Two-thirds of UK adults do not have an up-to-date weight record in primary care. Some studies suggest that doctors do not raise the topic of weight management for fear of causing embarrassment or offence, or are doubtful whether people will make changes. However, for people with weight-related long-term conditions, conversations with general practitioners (GPs) can be crucial. Our study explores how people with long-term conditions associated with overweight recall and interpret conversations about weight in British primary care. An experienced qualitative researcher interviewed 41 people aged <42 years with long-term conditions associated with overweight. A maximum variation sample was sought, and transcribed interviews were analysed thematically. We revealed that patients with weight-related long-term conditions have different experiences and expectations about the role of GPs in supporting weight management. If a GP did not raise weight management in the context of the long-term condition patients formed the impression that their overweight was not seen as "doctorable" that is, as an appropriate topic for the consultation, rather than a personal or "lifestyle" concern. This was explained in multiple ways, which are captured in two themes; perceiving weight as "doctorable"; and weight doctoring in primary care. The findings highlight the need for increased attention on weight-related long-term conditions in primary care. Interventions from GPs would be welcome if conducted in a sensitive, non-judgmental manner and based on sound evidence about what works.
Subject(s)
General Practitioners , Adult , Attitude of Health Personnel , Humans , Overweight , Primary Health Care , Qualitative Research , Referral and ConsultationABSTRACT
BACKGROUND: Endometriosis affects approximately 6-10% of women, with well documented delays between initial presentation with symptoms and diagnosis. In England, women typically seek help first in primary care, making this setting pivotal in women's pathways to diagnosis and treatment. English GP perspectives on managing possible endometriosis have not been previously reported. AIM: To explore what GPs identify as important considerations when caring for women with symptoms that raise the possibility of endometriosis. DESIGN AND SETTING: Qualitative study in English primary care. METHOD: Semi-structured scenario-based telephone interviews with 42 GPs from April 2019 to January 2020, based around a fictional scenario of a woman presenting to primary care with symptoms suggesting possible endometriosis. Interviews were thematically coded and analysed. RESULTS: Managing possible endometriosis in primary care brings challenges. While knowledge and awareness were prerequisites for considering endometriosis, other important considerations were raised. Symptoms suggestive of endometriosis are non-specific, making endometriosis one possible consideration of many. GPs move through a diagnostic hierarchy to exclude sinister causes and utilise trials of treatment as both therapeutic interventions and diagnostic tools; processes which take time. An endometriosis label or diagnosis has advantages and risks. GPs reported sharing decisions about investigation and referral while holding women's priorities as pivotal. These conversations were underpinned by their knowledge of uncertainties and unknowns, including the wide spectrum and unpredictability of endometriosis. CONCLUSION: GPs considerations are more complex than simply lacking awareness. The unknowns surrounding endometriosis matter to GPs. Further research and tailored resources for primary care, where women present with undifferentiated symptoms, are needed.