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"Butow, Phyllis"
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Management of common clinical problems experienced by survivors of cancer
by
Emery, Jon
,
Jefford, Michael
,
Nekhlyudov, Larissa
in
Alcohol use
,
Biomedical materials
,
Cancer
2022
Improvements in early detection and treatment have led to a growing prevalence of survivors of cancer worldwide. Models of care fail to address adequately the breadth of physical, psychosocial, and supportive care needs of those who survive cancer. In this Series paper, we summarise the evidence around the management of common clinical problems experienced by survivors of adult cancers and how to cover these issues in a consultation. Reviewing the patient's history of cancer and treatments highlights potential long-term or late effects to consider, and recommended surveillance for recurrence. Physical consequences of specific treatments to identify include cardiac dysfunction, metabolic syndrome, lymphoedema, peripheral neuropathy, and osteoporosis. Immunotherapies can cause specific immune-related effects most commonly in the gastrointestinal tract, endocrine system, skin, and liver. Pain should be screened for and requires assessment of potential causes and non-pharmacological and pharmacological approaches to management. Common psychosocial issues, for which there are effective psychological therapies, include fear of recurrence, fatigue, altered sleep and cognition, and effects on sex and intimacy, finances, and employment. Review of lifestyle factors including smoking, obesity, and alcohol is necessary to reduce the risk of recurrence and second cancers. Exercise can improve quality of life and might improve cancer survival; it can also contribute to the management of fatigue, pain, metabolic syndrome, osteoporosis, and cognitive impairment. Using a supportive care screening tool, such as the Distress Thermometer, can identify specific areas of concern and help prioritise areas to cover in a consultation.
Journal Article
A review of the barriers to using Patient‐Reported Outcomes (PROs) and Patient‐Reported Outcome Measures (PROMs) in routine cancer care
2021
Introduction
Patient‐reported outcomes (PROs) are direct reports from patients about the status of their health condition without amendment or interpretation by others. Patient‐reported outcome measures (PROMs) are the tools used to measure PROs; they are usually validated questionnaires patients complete by self‐assessing their health status. Whilst the benefits of using PROs and PROMs to guide real‐time patient care are well established, they have not been adopted by many oncology institutions worldwide. This literature review aimed to examine the barriers associated with using PROs and PROMs in routine oncology care.
Methods
A literature search was conducted across EMBASE, Medline and CINAHL databases. Studies detailing barriers to routine PRO use for real‐time patient care were included; those focusing on PRO collection in the research setting were excluded.
Results
Of 1165 records captured, 14 studies informed this review. At the patient level, patient time, incapacity and difficulty using electronic devices to complete PROMs were prominent barriers. At the health professional level, major barriers included health professionals’ lack of time and knowledge to meaningfully interpret and integrate PRO data into their clinical practice and the inability for PRO data to be acted upon. Prominent barriers at the service level included difficulties integrating PROs and PROMs into clinical workflows and inadequate information technology (IT) infrastructures for easy PRO collection.
Conclusion
This review has outlined potential barriers to routine PRO use in the oncology setting. Such barriers should be considered when implementing PROs into routine clinical practice.
Patient‐reported outcomes (PROs) are direct reports from patients about the status of their health condition without amendment or interpretation by others. This review article outlines potential barriers to routine PRO use in the oncology setting. Such barriers should be considered when implementing PROs into routine clinical practice.
Journal Article
Hospital-based interventions: a systematic review of staff-reported barriers and facilitators to implementation processes
by
Geerligs, Liesbeth
,
Shepherd, Heather L.
,
Butow, Phyllis
in
Barrier analysis
,
Cost-Benefit Analysis
,
Evidence-Based Practice
2018
Background
Translation of evidence-based interventions into hospital systems can provide immediate and substantial benefits to patient care and outcomes, but successful implementation is often not achieved. Existing literature describes a range of barriers and facilitators to the implementation process. This systematic review identifies and explores relationships between these barriers and facilitators to highlight key domains that need to be addressed by researchers and clinicians seeking to implement hospital-based, patient-focused interventions.
Methods
We searched MEDLINE, PsychInfo, Embase, Web of Science, and CINAHL using search terms focused specifically on barriers and facilitators to the implementation of patient-focused interventions in hospital settings. To be eligible, papers needed to have collected formal data (qualitative or quantitative) that specifically assessed the implementation process, as experienced by the staff involved.
Results
Of 4239 papers initially retrieved, 43 papers met inclusion criteria. Staff-identified barriers and facilitators to implementation were grouped into three main domains: system, staff, and intervention. Bi-directional associations were evident between these domains, with the strongest links evident between staff and intervention.
Conclusions
Researchers and health professionals engaged in designing patient-focused interventions need to consider barriers and facilitators across all three identified domains to increase the likelihood of implementation success. The interrelationships between domains are also crucial, as resources in one area can be leveraged to address barriers in others. These findings emphasize the importance of careful intervention design and pre-implementation planning in response to the specific system and staff context in order to increase likelihood of effective and sustainable implementation.
Trial registration
This review was registered on the PROSPERO database:
CRD42017057554
in February 2017.
Journal Article
The untold story of late effects: a qualitative analysis of breast cancer survivors’ emotional responses to late effects
by
Rosenberg, Jodie
,
Butow, Phyllis N.
,
Shaw, Joanne M.
in
Analysis
,
Breast cancer
,
Breast Neoplasms - therapy
2022
Purpose
Breast cancer survivors are at increased risk of adverse outcomes, called late effects, years after the completion of active treatment. Late effects can significantly impair physical functioning. The current study aimed to explore breast cancer survivors’ experiences of late effects, their emotional responses to existing or potential late effects and their perceived impact.
Methods
A total of 36 women treated for breast cancer in the last 10 years participated in semi-structured telephone interviews. Participant views were sought with respect to knowledge, experience, and perceived longer-term risk. A thematic analysis was conducted.
Results
Four themes emerged from the data: (1) late effects awareness, (2) framing and coping, (3) uncertainty and (4) management. There was a range of emotional responses to late effects; however, many participants reported being unaware of their risk of late effects. Participants conceptualised late effects as any long-term effect of treatment regardless of the time of onset. Women reported living with constant uncertainty and feared cancer recurrence. Many were focused on managing long-term treatment side effects, rather than late effects.
Conclusion
Many women undergo treatment and remain unaware of associated late effect risks. National guidelines recommend patients be informed about late effects; however, the results of this study suggest a gap between policy and practice. Evidence-based interventions are needed to equip women with strategies to physically and emotionally manage late effects.
Journal Article
Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review
2012
Purpose
The aim of this study was to describe what is known about levels of morbidity and the experience and needs of people with cancer, and their informal caregivers, living in rural areas.
Methods
A search of online databases for English language papers describing or assessing the prevalence of psychosocial morbidity or needs in a population of rural or regional cancer patients was employed. The following were excluded: intervention studies, discussion of service delivery, effectiveness of support groups or support via videoconferencing, concentrated on medical outcomes or survival rates, reported differences in the uptake of cancer screening or concentrated on health attitudes or treatment decision making.
Results
There were 37 studies in the review, including 25 quantitative studies (all surveys), 11 of which included a control group of urban patients and 12 qualitative studies. Until recently, most studies had methodological shortcomings. Only two prospective studies were identified, most studies focused on breast cancer and few addressed psychological morbidity. The majority of controlled studies reported worse outcomes for rural patients, who appear to have higher needs in the domains of physical/daily living. This may reflect more limited access to resources, a more self-sufficient lifestyle and personal characteristics, for example, being more stoical and less likely to ask for help. The need to travel for treatment caused many practical, emotional and financial problems for patients and burdened them with additional worry concerning family and work commitments. Some patients reported benefits in sharing experiences with others also forced to stay away from home, but most agreed that staying at home was preferable.
Conclusion
This review highlights that whilst we are beginning to get some insight into the needs of people with cancer in rural areas, much is still unknown. Population-based, prospective studies including people with heterogenous cancers from rural and urban settings are needed.
Journal Article
Disability, psychological distress and quality of life in relation to cancer diagnosis and cancer type: population-based Australian study of 22,505 cancer survivors and 244,000 people without cancer
2020
Background
Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type.
Methods
Questionnaire data from an Australian population-based cohort study (45 and Up Study (
n
= 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes—severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)—in participants with versus without cancer, for 13 cancer types.
Results
Compared to participants without cancer (
n
= 244,000), cancer survivors (
n
= 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25–1.32)), psychological (22.2% versus 23.5%, 1.05 (1.02–1.08)) and poor/fair QoL (15.2% versus 10.2%; 1.28 (1.24–1.32)). The outcomes varied by cancer type, being worse for multiple myeloma (PRs versus participants without cancer for disability 3.10, 2.56–3.77; distress 1.53, 1.20–1.96; poor/fair QoL 2.40, 1.87–3.07), lung cancer (disability 2.81, 2.50–3.15; distress 1.67, 1.46–1.92; poor/fair QoL 2.53, 2.21–2.91) and non-Hodgkin’s lymphoma (disability 1.56, 1.37–1.78; distress 1.20, 1.05–1.36; poor/fair QoL 1.66, 1.44–1.92) and closer to those in people without cancer for breast cancer (disability 1.23, 1.16–1.32; distress 0.95, 0.90–1.01; poor/fair QoL 1.15, 1.05–1.25), prostate cancer (disability 1.11, 1.04–1.19; distress 1.09, 1.02–1.15; poor/fair QoL 1.15, 1.08–1.23) and melanoma (disability 1.02, 0.94–1.10; distress 0.96, 0.89–1.03; poor/fair QoL 0.92, 0.83–1.01). Outcomes were worse with recent diagnosis and treatment and advanced stage. Physical disability in cancer survivors was greater in all population subgroups examined and was a major contributor to adverse distress and QoL outcomes.
Conclusions
Physical disability, distress and reduced QoL are common after cancer and vary according to cancer type suggesting priority areas for research, and care and support.
Journal Article
Return to work after a cancer diagnosis: a meta-review of reviews and a meta-synthesis of recent qualitative studies
by
Lim Chloe Yi Shing
,
Konings, Stephanie
,
Koczwara Bogda
in
Breast cancer
,
Cancer
,
Cancer therapies
2020
PurposeReturning to work (RTW) after cancer treatment can be challenging, but when desired, has many benefits. While there are many qualitative studies (reviews and recent studies) available on cancer survivors’ experience of returning to work, synthesis of these qualitative studies is lacking. We aimed to summarise the existing qualitative reviews and recent studies following the last published review, to examine cancer survivors’ motivations for and experiences of RTW, and to highlight factors within both the survivors and his or her environment that influence RTW.MethodA set of systematic reviews focusing on RTW were identified. A systematic search for individual papers published on RTW since the last review was also completed. Data extraction and bias assessment were conducted, with 25% double-coded to ensure reliability. A meta-ethnographic approach was utilised to synthesise the findings of each.ResultsSeven systematic reviews and 12 individual papers between 2017 and 2019 were identified. Quality was variable. Most reviews and studies focused on women with breast cancer. Three major themes were identified: person factors, employment factors and wider contextual factors including family, social and cultural variables.ConclusionsWe identified gaps in research on the RTW experiences of people with cancers other than breast, men, those with low incomes and more diverse populations.Implications for Cancer SurvivorsCancer survivors need to consider personal, employer and wider contextual factors when deciding whether and when to RTW. Future interventions to support survivors should be informed by these findings, addressing the diverse range of potential factors related to RTW in an individual survivor.
Journal Article
Psychological morbidity and quality of life of ethnic minority patients with cancer: a systematic review and meta-analysis
by
McGrane, Joshua
,
King, Madeleine T
,
Aldridge, Lynley J
in
Anxiety
,
Cancer
,
Cultural anthropology
2011
Ethnic minority is associated with higher cancer incidence and poorer survival than is being in the majority group. We did a systematic review and meta-analysis to assess whether psychological morbidity and health-related quality of life (HRQoL) were affected by minority status.
We searched Medline, AMED, PsycINFO, Embase, CENTRAL, CINAHL, PubMed, Sociological Abstracts, and Web of Science for English-language articles published between Jan 1, 1995, and October, 2009. Articles were eligible if they reported original data on anxiety, depression, distress (for psychological morbidity), or HRQoL in minority and majority cancer patients or survivors. Minority status was defined as being an immigrant or having an ethnic, linguistic, or religious background different to the majority of the population in the country where the research was done. We excluded African Americans and indigenous groups. Eligible articles were rated for quality of reporting, external validity, internal validity, sample size, and power. Each quality criterion was rated independently by two reviewers until inter-rater reliability was achieved. In a meta-analysis we compared mean scores adjusted for socioeconomic status and other sociodemographic and clinical variables, where available. Effect sizes greater than 0·5 and 95% CI that included 0·5 or −0·5 were deemed clinically important, with negative values indicating worse outcomes in minority patients. We assessed publication bias by estimating the number of potential unpublished studies and the number of non-signficant studies with p=0·05 required to produce a non-significant overall result.
We identified 21 eligible articles that included 18 datasets collected in the USA and one in each of Canada, Romania, and the UK. Ethnic minority groups were Hispanic, Asian or Pacific Islander, or Hungarian (one dataset). Overall, we found minority versus majority groups to have significantly worse distress (mean difference −0·37, 95% CI −0·46 to −0·28; p<0·0001), depression (−0·23, −0·36 to −0·11; p=0·0003), and overall HRQoL (−0·33, −0·58 to −0·07; p=0·013). Further analyses found disparities to be specific to Hispanic patients in the USA, in whom poorer outcomes were consistent with potentially clinically important differences for distress (effect size −0·37, 95% CI −0·54 to −0·20; p<0·0001), social HRQoL (−0·45, −0·87 to −0·03; p=0·035), and overall HRQoL (−0·49, −0·78 to −0.20; p=0·0008). Results were significantly heterogeneous for overall HRQoL and all domains. Tests for interaction, for adjusted versus unadjusted and comparisons of high-quality, medium-quality, and low-quality articles, were generally non-significant, which suggests no bias. We found no evidence of any substantive publication bias.
Hispanic cancer patients in the USA, but not other ethnic minority groups, report significantly worse distress, depression, social HRQoL, and overall HRQoL than do majority patients, of which all but depression might be clinically important. Heterogeneous results might, however, have limited the interpretation. Data for other minority groups and for anxiety are scarce. More studies are needed from outside the USA. Future reports should more clearly describe their minority group samples and analyses should control for clinical and sociodemographic variables known to predict outcomes. Understanding of why outcomes are poor in US Hispanic patients is needed to inform the targeting of interventions.
Prince of Wales Hospital, Sydney, Australia.
Journal Article
Adapting the nominal group technique for priority setting of evidence-practice gaps in implementation science
by
Young, Jane M.
,
York, Sarah
,
Butow, Phyllis N.
in
Biomedical Research
,
Clinical medicine
,
Evidence
2016
Background
There are a variety of methods for priority setting in health research but few studies have addressed how to prioritise the gaps that exist between research evidence and clinical practice. This study aimed to build a suite of robust, evidence based techniques and tools for use in implementation science projects. We applied the priority setting methodology in lung cancer care as an example.
Methods
We reviewed existing techniques and tools for priority setting in health research and the criteria used to prioritise items. An expert interdisciplinary consensus group comprised of health service, cancer and nursing researchers iteratively reviewed and adapted the techniques and tools. We tested these on evidence-practice gaps identified for lung cancer. The tools were pilot tested and finalised. A brief process evaluation was conducted.
Results
We based our priority setting on the Nominal Group Technique (NGT). The adapted tools included a matrix for individuals to privately rate priority gaps; the same matrix was used for group discussion and reaching consensus. An investment exercise was used to validate allocation of priorities across the gaps. We describe the NGT process, criteria and tool adaptations and process evaluation results.
Conclusions
The modified NGT process, criteria and tools contribute to building a suite of methods that can be applied in prioritising evidence-practice gaps. These methods could be adapted for other health settings within the broader context of implementation science projects.
Journal Article
What are the unmet supportive care needs of people with cancer? A systematic review
by
Butow, Phyllis N.
,
Young, Jane M.
,
Solomon, Michael J.
in
Activities of Daily Living
,
Cancer
,
Classification
2009
Goals of work
The identification and management of unmet supportive care needs is an essential component of health care for people with cancer. Information about the prevalence of unmet need can inform service planning/redesign.
Materials and methods
A systematic review of electronic databases was conducted to determine the prevalence of unmet supportive care needs at difference time points of the cancer experience.
Results
Of 94 articles or reports identified, 57 quantified the prevalence of unmet need. Prevalence of unmet need, their trends and predictors were highly variable in all domains at all time points. The most frequently reported unmet needs were those in the activities of daily living domain (1–73%), followed by psychological (12–85%), information (6–93%), psychosocial (1–89%) and physical (7–89%). Needs within the spiritual (14–51%), communication (2–57%) and sexuality (33–63%) domains were least frequently investigated. Unmet needs appear to be highest and most varied during treatment, however a greater number of individuals were likely to express unmet need post-treatment compared to any other time. Tumour-specific unmet needs were difficult to distinguish. Variations in the classification of unmet need, differences in reporting methods and the diverse samples from which patients were drawn inhibit comparisons of studies.
Conclusion
The diversity of methods used in studies hinders analysis of patterns and predictors of unmet need among people with cancer and precludes generalisation. Well-designed, context-specific, prospective studies, using validated instruments and standard methods of analysis and reporting, are needed to benefit future interventional research to identify how best to address the unmet supportive care needs of people with cancer.
Journal Article