Turning a Curve: How People Use Everyday Resources to Negotiate Recovery From Cancer Treatment With Curative Intent.

Many more cancers are treated with intent to cure now than in previous decades, but for most, this involves significant effects from which people need to recover psychologically and socially, as well as physically. This longitudinal photo-elicitation interview study uses grounded theory to explain how people discharged from specialist care made use of everyday social and material resources to manage this process at home. Recovery is presented as a curve in life's pathway requiring gradual reorientation, drawing on social worlds and domestic resources to calibrate this process. Findings are described in three stages: (1) responding to diagnosis and treatment, (2) using social resources for meaning-making, and (3) developing assets for recovery. During treatment, participants drew on past identities to reinforce their sense of self, and personalized health care communication supported this process. In the weeks after treatment, new frameworks of understanding were constructed from perspectives on cancer encountered in the family, workplace, and outpatient clinics. Recovery processes included the negotiation of personal change, the renegotiation of close relationships, and the use of everyday resources to regain three sensations: control, comfort, and continuity. Supportive care would benefit from an individualized exploration of the assets that can help people to negotiate this challenging phase as treatment comes to a close. Possibilities for self-care (the maintenance of health and well-being in the context of everyday life) can be explored and assessed through personalized discussion around the identities, social worlds, and everyday resources available to each individual.

Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making.

INTRODUCTION: Malignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients' distress and uncertainty. Little attention has been paid to the implicit influences on this process-for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making. METHODS AND ANALYSIS: Exploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition. Registration details: The realist review is registered with PROSPERO (CRD42022308251).

Development of a Core Outcome Set for the research and assessment of inoperable malignant bowel obstruction.

BACKGROUND: Malignant bowel obstruction is experienced by 15% of people with advanced cancer, preventing them from eating and drinking and causing pain, nausea and vomiting. Surgery is not always appropriate. Management options include tube or stent drainage of intestinal contents and symptom control using medication. Published literature describing palliative interventions uses a broad range of outcome measures, few of which are patient-relevant. This hinders evidence synthesis, and fails to consider the perspectives of people undergoing treatment. AIMS: To develop a Core Outcome Set for the assessment of inoperable malignant bowel obstruction with clinician, patient and caregiver involvement, using COMET methodology (Core Outcome Measures in Effectiveness Trials). METHODS: A systematic review of clinical trials and observational studies, a rapid review of the qualitative literature and in-depth patient and clinician interviews were conducted to identify a comprehensive list of outcomes. Outcomes were compared and consolidated by the study Steering Group and Patient and Public Involvement contributors, and presented to an international clinical Expert Panel for review. Outcomes from the finalised list were rated for importance in a three-round international Delphi process: results of two survey rounds were circulated to respondents, and two separate consensus meetings were conducted with clinicians and with patients and caregivers via virtual conferencing, using live polling to reach agreement on a Core Outcome Set. RESULTS: 130 unique outcomes were identified. Following the independent Expert Panel review, 82 outcomes were taken into round 1 of the Delphi survey; 24 outcomes reached criteria for critical importance across all stakeholder groups and none reached criteria for dropping. All outcomes rated critically important were taken forward for re-rating in round 2 and all other outcomes dropped. In round 2, all outcomes were voted critically important by at least one stakeholder group. Round 2 outcomes were presented again at online consensus meetings, categorised as high ranking (n = 9), middle ranking (n = 7) or low ranking (n = 8). Stakeholders reached agreement on 16 core outcomes across four key domains: Symptom control, Life impact, Treatment outcomes, and Communication and patient preferences. CONCLUSION: Use of this Core Outcome Set can help to address current challenges in making sense of the evidence around treatment for inoperable malignant bowel obstruction to date, and underpin a more robust future approach. Clearer communication and an honest understanding between all stakeholders will help to provide a basis for responsible decision-making in this distressing situation in clinical practice.

Challenges and opportunities for cervical screening in women over the age of 50 years: a qualitative study.

BACKGROUND: Cervical cancer is a preventable disease. Cases in women age >50 years are predicted to rise by 60% in the next two decades, yet this group are less likely to attend for screening than younger women. AIM: To seek novel solutions to the challenges of cervical screening in women >50 years of age by examining practitioner and service-user experiences. DESIGN AND SETTING: Semi-structured interviews were conducted with 28 practitioners and 24 service users >50 years of age, recruited via UK primary care networks in Northern England in 2016-2017, to explore experiences related to cervical screening. METHOD: An inductive thematic analysis was conducted to explore the data. RESULTS: Findings are presented under three key themes. The first, exploring the barriers to successful cervical screening, examines the influences of sexuality and early experiences of screening on attendance, and how preventive health care becomes a low priority as women age. The second, the role of relationships, explores how peer talk shapes attitudes towards cervical screening, how teamwork between practitioners engenders investment in cervical screening, and how interactions between service users and primary care over time can significantly affect intentions to screen. The third, what constitutes good practice, describes practical and sensitive approaches to screening tailored to women aged >50 years. CONCLUSION: Good practice involves attention to structural and practical challenges, and an understanding of the role of relationships in shaping screening intentions. Experienced practitioners adapt procedures to increase sensitivity, and balance time invested in problem solving against the benefits of reaching practice targets for attendance. Building networks of expertise across multiple practices can increase practitioner skill in screening this age group.

The range and suitability of outcome measures used in the assessment of palliative treatment for inoperable malignant bowel obstruction: A systematic review.

BACKGROUND: Malignant bowel obstruction, a complication of certain advanced cancers, causes severe symptoms which profoundly affect quality of life. Clinical management remains complex, and outcome assessment is inconsistent. AIM: To identify outcomes evaluating palliative treatment for inoperable malignant bowel obstruction, as part of a four-phase study developing a core outcome set. DESIGN: The review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA); PROSPERO (ID: CRD42019150648). Eligible studies included at least one subgroup with obstruction below the ligament of Treitz undergoing palliative treatment for inoperable malignant bowel obstruction. Study quality was not assessed because the review does not evaluate efficacy. DATA SOURCES: Medline, Embase, the Cochrane Database, CINAHL, PSYCinfo Caresearch, Open Grey and BASE were searched for trials and observational studies in October 2021. RESULTS: A total of 4769 studies were screened, 290 full texts retrieved and 80 (13,898 participants) included in a narrative synthesis; 343 outcomes were extracted verbatim and pooled into 90 unique terms across six domains: physiological, nutrition, life impact, resource use, mortality and survival. Prevalent outcomes included adverse events (78% of studies), survival (54%), symptom control (39%) and mortality (31%). Key individual symptoms assessed were vomiting (41% of studies), nausea (34%) and pain (33%); 19% of studies assessed quality of life. CONCLUSIONS: Assessment focuses on survival, complications and overall symptom control. There is a need for definitions of treatment 'success' that are meaningful to patients, a more consistent approach to symptom assessment, and greater consideration of how to measure wellbeing in this population.

Translating qualitative data into intervention content using the Theoretical Domains Framework and stakeholder co-design: a worked example from a study of cervical screening attendance in older women.

BACKGROUND: Previous screening interventions have demonstrated a series of features related to social determinants which have increased uptake in targeted populations, including the assessment of health beliefs and barriers to screening attendance as part of intervention development. Many studies cite the use of theory to identify methods of behaviour change, but fail to describe in detail how theoretical constructs are transformed into intervention content. The aim of this study was to use data from a qualitative exploration of cervical screening in women over 50 in the UK as the basis of intervention co-design with stakeholders using behavioural change frameworks. We describe the identification of behavioural mechanisms from qualitative data, and how these were used to develop content for a service-user leaflet and a video animation for practitioner training. The interventions aimed to encourage sustained commitment to cervical screening among women over 50, and to increase sensitivity to age-related problems in screening among primary care practitioners. METHODS: Secondary coding of a qualitative data set to extract barriers and facilitators of cervical screening attendance. Barrier and facilitator statements were categorised using the Theoretical Domains Framework (TDF) to identify relevant behaviour change techniques (BCTs). Key TDF domains and associated BCTs were presented in stakeholder focus groups to guide the design of intervention content and mode of delivery. RESULTS: Behavioural determinants relating to attendance clustered under three domains: beliefs about consequences, emotion and social influences, which mapped to three BCTs respectively: (1) persuasive communication/information provision; (2) stress management; (3) role modelling and encouragement. Service-user stakeholders translated these into three pragmatic intervention components: (i) addressing unanswered questions, (ii) problem-solving practitioner challenges and (iii) peer group communication. Based on (ii), practitioner stakeholders developed a call to action in three areas - clinical networking, history-taking, and flexibility in screening processes. APEASE informed modes of delivery (a service-user leaflet and a cartoon animation for practitioners). CONCLUSION: The application of the TDF to qualitative data can provide an auditable protocol for the translation of qualitative data into intervention content.

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review.

BACKGROUND: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. AIM: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals' views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. DESIGN: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (https://www.crd.york.ac.uk/prospero, CRD42020176393). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. RESULTS: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. CONCLUSION: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set.

Development of a core outcome set to use in the research and assessment of malignant bowel obstruction: protocol for the RAMBO study.

INTRODUCTION: Studies regarding the management of malignant bowel obstruction (MBO) report conflicting findings. This is partly due to different outcome measures being used to evaluate severity of MBO and the response to treatments. Furthermore, current outcome measures focus mainly on measurable physiological parameters which may not correlate strongly with patient-defined quality of life. The development of core outcome sets allows a consistent approach to evaluating clinical conditions taking into consideration patient, healthcare professional and researcher viewpoints. It follows an internationally recognised standard methodology. We present a protocol for the development of a core outcome set for Research and Assessment of MBO (RAMBO). METHODS: RAMBO is a multicentre study, comprising of four phases: a systematic review to examine current scope of outcome measures associated with MBO (phase I). Interviews with patients, companions and healthcare professionals will explore priorities and preferences for care and outcomes (phase II). An expert panel meeting will collate the findings into a set of outcomes (phase III), refined by consensus through a Delphi survey with key stakeholders (phase IV). The final set of outcomes will be ratified at a consensus meeting. Each step will actively include patient partners. Thematic analysis and descriptive statistics will be used to analyse qualitative and quantitative data, respectively. ETHICS AND DISSEMINATION: Ethical approval was obtained (Wales REC 5, REF: 19/LO/1876). Study participants and relevant stakeholders will be updated with newsletters and a lay summary at the end of the study. Abstracts will be submitted to national and international conferences, result papers will be submitted to peer-reviewed, open access journals. TRIAL AND PROSPERO REGISTRATION NUMBERS: Core Outcome Measures in Effectiveness Trials (1402); Systematic Literature Review (CRD42019150648); Rapid Review (CRD42020176393).