Christine M. May

Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness

BackgroundIn this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding – and sometimes preventing – disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment.DiscussionAs the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization.SummaryBurden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.

RESTORE: An exploratory trial of an online intervention to enhance self-efficacy to manage problems associated with cancer-related fatigue following primary cancer treatment: Study protocol for a randomized controlled trial

BackgroundThere are over 25 million people worldwide living with or beyond cancer and this number is increasing. Cancer survivors face a range of problems following primary treatment. One of the most frequently reported and distressing symptoms experienced by cancer survivors is fatigue. There is growing support for survivors who are experiencing problems after cancer treatment to engage in supported self-management. To date there is some evidence of effective interventions to manage fatigue in this population; however, to our knowledge there are no online resources that draw on this information to support self-management of fatigue. This paper describes the protocol for an exploratory randomized controlled trial of an online intervention to support self-management of cancer-related fatigue after primary cancer treatment.Methods/designThis is a parallel-group two-armed (1:1) exploratory randomized controlled trial including 125 cancer survivors experiencing fatigue (scoring ≥4 on a unidimensional 11-point numeric rating scale for fatigue intensity) within five years of primary treatment completion with curative intent. Participants will be recruited from 13 NHS Trusts across the UK and randomized to either the online intervention (RESTORE), or a leaflet comparator (Macmillan Cancer Backup, Coping with Fatigue). The primary outcome is a change in Perceived Self-Efficacy for Fatigue Self-Management (as measured by the Perceived Self-Efficacy for Fatigue Self-Management Instrument). Secondary outcomes include impact on perception and experience of fatigue (measured by the Brief Fatigue Inventory), and quality of life (measured by the Functional Assessment of Cancer Therapy - General and the Personal Wellbeing Index). Outcome measures will be collected at baseline, 6 weeks (completion of intervention), and 3 months. Process evaluation (including telephone interviews with recruiting staff and participants) will determine acceptability of the intervention and trial processes.DiscussionData from this trial will be used to refine the intervention and contribute to the design of an effectiveness trial. This intervention will be expanded to address other cancer-related problems important to cancer survivors following primary cancer treatment.Trial registrationISRCTN67521059

Pre-surgery depression and confidence to manage problems predict recovery trajectories of health and wellbeing in the first two years following colorectal cancer: results from the CREW cohort study

Purpose This paper identifies predictors of recovery trajectories of quality of life (QoL), health status and personal wellbeing in the two years following colorectal cancer surgery. Methods 872 adults receiving curative intent surgery during November 2010 to March 2012. Questionnaires at baseline, 3, 9, 15, 24 months post-surgery assessed QoL, health status, wellbeing, confidence to manage illness-related problems (self-efficacy), social support, co-morbidities, socio-demographic, clinical and treatment characteristics. Group-based trajectory analyses identified distinct trajectories and predictors for QoL, health status and wellbeing. Results Four recovery trajectories were identified for each outcome. Groups 1 and 2 fared consistently well (scores above/within normal range); 70.5% of participants for QoL, 33.3% health status, 77.6% wellbeing. Group 3 had some problems (24.2% QoL, 59.3% health, 18.2% wellbeing); Group 4 fared consistently poorly (5.3% QoL, 7.4% health, 4.2% wellbeing). Higher pre-surgery depression and lower self-efficacy were significantly associated with poorer trajectories for all three outcomes after adjusting for other important predictors including disease characteristics, stoma, anxiety and social support. Conclusions Psychosocial factors including self-efficacy and depression before surgery predict recovery trajectories in QoL, health status and wellbeing following colorectal cancer treatment independent of treatment or disease characteristics. This has significant implications for colorectal cancer management as appropriate support may be improved by early intervention resulting in more positive recovery experiences.

RESTORE: an exploratory trial of a web-based intervention to enhance self-management of cancer-related fatigue: findings from a qualitative process evaluation

BackgroundCancer-related fatigue is a distressing symptom experienced by many after cancer treatment. An exploratory randomised controlled trial was conducted to test proof of concept of RESTORE: a web-based tool to enhance self-efficacy to manage cancer-related fatigue. This paper reports findings from a qualitative process evaluation to determine feasibility and acceptability of the intervention and trial processes.MethodQualitative process evaluation carried out at the end of the trial to explore participants’ experiences using semi-structured telephone interviews with a purposive sample of participants from both trial arms. Normalisation Process Theory informed data collection and analysis. Analysis involved directed content analysis within a Framework Approach.ResultsNineteen participants took part. They understood the purpose and requirements of the trial and identified beneficial outcomes from taking part. For the majority, the work of the trial was easily accommodated into daily routines and did not require new skills. There were mixed views about the value of the information provided by RESTORE, depending on time since diagnosis and treatment. Personal factors, constraints of the intervention, and environmental context inhibited the integration and embedding of RESTORE into everyday life. Access to the intervention at an early stage in the treatment trajectory was important to effective utilisation, as were individual preferences for delivery of information.ConclusionThe theoretical foundations of the intervention were sound. Participants derived benefits from the intervention but barriers to implementation and integration suggest that RESTORE and the trial processes require some modification before testing in a full trial.Trial registrationISRCTN67521059 (10th October 2012).

Using Normalization Process Theory in feasibility studies and process evaluations of complex healthcare interventions: a systematic review

BackgroundNormalization Process Theory (NPT) identifies, characterises and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies and other complex interventions. A large body of literature that employs NPT to inform feasibility studies and process evaluations of complex healthcare interventions has now emerged. The aims of this review were to review this literature; to identify and characterise the uses and limits of NPT in research on the implementation and integration of healthcare interventions; and to explore NPT’s contribution to understanding the dynamics of these processes.MethodsA qualitative systematic review was conducted. We searched Web of Science, Scopus and Google Scholar for articles with empirical data in peer-reviewed journals that cited either key papers presenting and developing NPT, or the NPT Online Toolkit (www.normalizationprocess.org). We included in the review only articles that used NPT as the primary approach to collection, analysis or reporting of data in studies of the implementation of healthcare techniques, technologies or other interventions. A structured data extraction instrument was used, and data were analysed qualitatively.ResultsSearches revealed 3322 citations. We show that after eliminating 2337 duplicates and broken or junk URLs, 985 were screened as titles and abstracts. Of these, 101 were excluded because they did not fit the inclusion criteria for the review. This left 884 articles for full-text screening. Of these, 754 did not fit the inclusion criteria for the review. This left 130 papers presenting results from 108 identifiable studies to be included in the review. NPT appears to provide researchers and practitioners with a conceptual vocabulary for rigorous studies of implementation processes. It identifies, characterises and explains empirically identifiable mechanisms that motivate and shape implementation processes. Taken together, these mean that analyses using NPT can effectively assist in the explanation of the success or failure of specific implementation projects. Ten percent of papers included critiques of some aspect of NPT, with those that did mainly focusing on its terminology. However, two studies critiqued NPT emphasis on agency, and one study critiqued NPT for its normative focus.ConclusionsThis review demonstrates that researchers found NPT useful and applied it across a wide range of interventions. It has been effectively used to aid intervention development and implementation planning as well as evaluating and understanding implementation processes themselves. In particular, NPT appears to have offered a valuable set of conceptual tools to aid understanding of implementation as a dynamic process.

Trajectories of quality of life, health status and personal wellbeing up to two years after curative intent treatment for colorectal cancer: results from the UK ColoREctal Wellbeing (CREW) cohort study

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.

The impact of primary colorectal cancer treatment on physical symptoms and functioning in the first two years: results from the colorectal well-being (CREW) cohort study

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.