RESUMO
People living with treatable-but-not-curable (TbnC) cancer encounter cancer-related needs. While the NHS long-term plan commits to offering a Holistic Needs Assessment (HNA) and care plan to all people diagnosed with cancer, the content, delivery and timing of this intervention differs across practice. Understanding how people make sense of their cancer experience can support personalised care. A conceptual framework based on personal narratives of living with and beyond cancer (across different cancer types and all stages of the disease trajectory), identified three interlinked themes: Adversity, Restoration and Compatibility, resulting in the ARC framework.Our aim was to use the ARC framework to underpin the HNA to improve the experience of personalised care and support planning for people living with TbnC cancer. We used clinical work experience to operationalise the ARC framework and develop the intervention, called the ARC HNA, and service-level structure, called the ARC clinic. We sought expert input on the proposed content and structure from patients and clinicians through involvement and engagement activities. Delivered alongside standard care, the ARC HNA was piloted with patients on the TbnC cancer (myeloma and metastatic breast, prostate or lung) pathway, who were 6-24 months into their treatment. Iterations were made to the content, delivery and timing of the intervention based on user feedback.Fifty-one patients received the intervention. An average of 12 new concerns were identified per patient, and 96% of patients achieved at least one of their goals. Patients valued the space for reflection and follow-up, and clinicians valued the collaborative approach to meeting patients' supportive care needs. Compared with routine initial HNA and care plan completion rates of 13%, ARC clinic achieved 90% with all care plans shared with general practitioners. The ARC clinic adopts a novel and proactive approach to delivering HNAs and care plans in a meaningful and personalised way.
Assuntos
Saúde Holística , Avaliação das Necessidades , Neoplasias , Medicina de Precisão , Humanos , Neoplasias/terapia , Masculino , Feminino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: The Beta-blockers Or Placebo for Primary Prophylaxis of oesophageal varices (BOPPP) trial is a 3-year phase IV, multi-centre clinical trial of investigational medicinal product (CTIMP) that aims to determine the effectiveness of carvedilol in the prevention of variceal bleeding for small oesophageal varices in patients with cirrhosis. Early engagement of General Practitioners (GPs) in conversations about delivery of a potentially effective secondary care-initiated treatment in primary care provides insights for future implementation. The aim of this study was to understand the implementation of trial findings by exploring i) GP perspectives on factors that influence implementation beyond the context of the trial and ii) how dose titration and ongoing treatment with carvedilol is best delivered in primary care. METHODS: This qualitative study was embedded within the BOPPP trial and was conducted alongside site opening. GP participants were purposively sampled and recruited from ten Clinical Commissioning Groups in England and three Health Boards across Wales. Semi-structured telephone individual interviews were conducted with GPs (n = 23) working in England and Wales. Data were analysed using reflexive thematic analysis. FINDINGS: Five overarching themes were identified: i) primary care is best placed for oversight, ii) a shared approach led by secondary care, iii) empower the patient to take responsibility, iv) the need to go above and beyond and v) develop practice guidance. The focus on prevention, attention to holistic care, and existing and often long-standing relationships with patients provides an impetus for GP oversight. GPs spoke about the value of partnership working with secondary care and of prioritising patient-centred care and involving patients in taking responsibility for their own health. An agreed pathway of care, clear communication, and specific, accessible guidance on how to implement the proposed treatment strategy safely and effectively are important determinants in the success of implementation. CONCLUSIONS: Our findings for implementing secondary care-initiated treatment in primary care are important to the specifics of the BOPPP trial but can also go some way in informing wider learning for other trials where work is shared across the primary-secondary care interface, and where findings will impact the primary care workload. We propose a systems research perspective for addressing implementation of CTIMP findings at the outset of research. The value of early stakeholder involvement is highlighted, and the need to consider complexity in terms of the interaction between the intervention and the context in which it is implemented is acknowledged. TRIAL REGISTRATION: ISRCTN10324656.
Assuntos
Varizes Esofágicas e Gástricas , Clínicos Gerais , Antagonistas Adrenérgicos beta , Carvedilol , Hemorragia Gastrointestinal , Humanos , Atenção Primária à Saúde , Atenção Secundária à SaúdeRESUMO
BACKGROUND: No systematic review and narrative synthesis on personal recovery in mental illness has been undertaken. AIMS: To synthesise published descriptions and models of personal recovery into an empirically based conceptual framework. METHOD: Systematic review and modified narrative synthesis. RESULTS: Out of 5208 papers that were identified and 366 that were reviewed, a total of 97 papers were included in this review. The emergent conceptual framework consists of: (a) 13 characteristics of the recovery journey; (b) five recovery processes comprising: connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (giving the acronym CHIME); and (c) recovery stage descriptions which mapped onto the transtheoretical model of change. Studies that focused on recovery for individuals of Black and minority ethnic (BME) origin showed a greater emphasis on spirituality and stigma and also identified two additional themes: culturally specific facilitating factors and collectivist notions of recovery. CONCLUSIONS: The conceptual framework is a theoretically defensible and robust synthesis of people's experiences of recovery in mental illness. This provides an empirical basis for future recovery-oriented research and practice.