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Self-management, self-management support needs and interventions in advanced cancer: a scoping review
  1. Suman Budhwani1,2,
  2. Walter P Wodchis1,2,
  3. Camilla Zimmermann3,4,
  4. Rahim Moineddin5 and
  5. Doris Howell3,6
  1. 1 Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, ON, Canada
  2. 2 Health System Performance Research Network, University of Toronto, Toronto, ON, Canada
  3. 3 Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada
  4. 4 Institute of Medical Science, University of Toronto, Toronto, ON, Canada
  5. 5 Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada
  6. 6 Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada
  1. Correspondence to Suman Budhwani, Institute of Health Policy, Management and Evaluation, University of Toronto, 4th Floor, 155 College Street, Toronto, ON, Canada M5T 1P8; suman.budhwani{at}mail.utoronto.ca

Abstract

Patients with advanced cancer can experience illness trajectories similar to other progressive chronic disease conditions where undertaking self-management (SM) and provision of self-management support (SMS) becomes important. The main objectives of this study were to map the literature of SM strategies and SMS needs of patients with advanced cancer and to describe SMS interventions tested in this patient population. A scoping review of all literature published between 2002 and 2016 was conducted. A total of 11 094 articles were generated for screening from MEDLINE, Embase, PsychINFO, CINAHL and Cochrane Library databases. A final 55 articles were extracted for inclusion in the review. Included studies identified a wide variety of SM behaviours used by patients with advanced cancer including controlling and coping with the physical components of the disease and facilitating emotional and psychosocial adjustments to a life-limiting illness. Studies also described a wide range of SMS needs, SMS interventions and their effectiveness in this patient population. Findings suggest that SMS interventions addressing SMS needs should be based on a sound understanding of the core skills required for effective SM and theoretical and conceptual frameworks. Future research should examine how a patient-oriented SMS approach can be incorporated into existing models of care delivery and the effects of SMS on quality of life and health system utilisation in this population.

  • self-management
  • self-management support
  • advanced cancer
  • life-limiting illness
  • chronic disease management
  • palliative care

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Introduction

In Canada, approximately 8–57 cases per 100 000 were diagnosed with advanced or stage IV metastatic cancer between 2011 and 2013 depending on the province/territory and type of cancer.1 In England, 20% of all cases diagnosed with cancer in 2014 were stage IV.2 Advanced cancer is unlikely to be cured and can be associated with significant physical and psychosocial symptom burden for patients, due to repetitive cycles of recurrent illness, treatment, recovery and retreatment until the end of life.3–5

Improvements in treatment have led to increasing survival times for most cancer types, including patients diagnosed with advanced stage cancer.6 Consequently, patients must now manage the symptoms, treatments and other effects of advanced cancer as a long-term illness.3 5 7 The patients’ illness trajectory or ‘events over the course of illness, which are shaped by the individual’s response to illness, interactions with those around them and interventions’3 can closely resemble the trajectory of other incurable, progressive chronic illnesses.3 5 Within the illness trajectory, patients may undergo active treatment for symptom control and life prolongation, while simultaneously experiencing disease progression, unresponsiveness to treatment, exhaustion of available treatment options and limited life expectancy.5 8 Patients can experience both survivorship and limited mortality, while continuing to manage chronic symptoms, treatment side effects and other effects of an advanced life-limiting chronic disease.3 9–11

In order to manage chronic, advanced cancer, strategies for effective disease management, such as self-management support (SMS), may be required to enhance cancer care or palliative care service delivery models to help alleviate illness burden.3 8 10–15 Self-management (SM) is defined as ‘an individual’s ability to detect and manage symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition’,16 and patients hold responsibility to undertake SM tasks and behaviours to live well when faced with the consequences of a chronic disease.17 18 The provision of SMS or the ‘systematic provision of education and supportive interventions by health care staff to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support’ (18 as cited in 19) can facilitate patient SM. SM behaviours may subsequently improve patient and health system outcomes as demonstrated in other advanced disease populations.20 21 Scoping reviews of SMS in advanced cancer have not been previously conducted and are needed to identify the current state of knowledge to inform future research and health policy regarding integration of SMS in cancer care and palliative care service delivery models.

Thus, the main objective of this scoping review study was to understand the SM behaviours and SMS needs of patients diagnosed with advanced cancer. A secondary objective was to summarise the breadth of SMS interventions currently being provided to this patient population.

Methods

A scoping literature review was conducted to map and synthesise the knowledge of SM and SMS needs in patients with advanced cancer. Scoping reviews are defined as ‘exploratory projects that systematically map the literature available on a topic, identifying the key concepts, theories, sources of evidence, and gaps in the research’.22 23 Scoping reviews summarise evidence in order to explain the breadth and depth of knowledge in a field or topic area, particularly where research literature is expected to be methodologically, theoretically or discipline-wise diverse or limited, or where assessment of quality is not required.22–24 The focus of this review was to map the range of evidence on SM and SMS needs in patients with advanced cancer.

The methodological framework proposed by Arksey and O’Malley was followed,25 augmented with guidelines from the Joanna Briggs Institute26 and recommendations for the methodology’s practical application.24 27 28 The review was composed of five key stages in accordance with the Arksey & O’Malley framework notably: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data and (5) collating, summarising and reporting the results. The optional consultation exercise sixth stage was not implemented for this study. A detailed study protocol can be obtained from the primary author.

Research questions

In accordance with step 1, the following research questions guided this scoping review of the literature. The broad question guiding the review was: ‘What is the state of knowledge on SM behaviours, SMS needs, and SMS interventions for patients with advanced cancer?’. Subquestions were:

  1. What are the SM behaviours and SMS needs of patients living with advanced cancer?

  2. What SMS interventions have been tested for patients with advanced cancer?

Identifying relevant studies for inclusion

Empirical databases of MEDLINE, Embase, PsychINFO, CINAHL and Cochrane Library were searched between the time period of 2002 (the emergence of literature on conceptualization and definition of SM)17 29 and present date October 2016. Both Medical Subject Headings (MeSH headings or equivalent) and free word texts were used in the search strategy. Search terms were selected using search strings used in previous systematic reviews and in consultation with a University of Toronto Librarian including but not limited to terms for SM such as ‘self-management’ or ‘self care’ and for ‘neoplasm’ or ‘neoplasm metastasis’. Limits on the search were placed to include only studies focusing on adults aged 19 years and over and those published in the English language. The search string used for MEDLINE database (also used to develop search strings used for the other databases) is shown in online supplementary appendix A.

A total of 11 094 articles were generated from the search strings (MEDLINE: n=2776; Embase: n=6604; PsychINFO: n=572; CINAHL: n=138; Cochrane Library: n=1004), and 2969 studies were removed as duplicates. This resulted in a total of 8125 articles being available for screening (figure 1). These articles were imported into Covidence, a web-based citation screening software for systematic reviews.30

Figure 1

Flow of scoping review.

Inclusion and exclusion criteria for study selection

Two reviewers (SB and DH) independently screened the first 30 articles through title and abstract review based on the inclusion/exclusion criteria (table 1) developed in accordance with the Joanna Briggs Institute Scoping Review Methodology guidelines26 and content expertise (DH). Comparison of reviewer agreement yielded a Cohen’s Kappa statistic of 97% suggesting strong inter-rater reliability. The remaining articles were then screened, and any further conflicts resolved through discussion. This yielded a total of 337 articles for full-text review (figure 1). Full-text review was also independently conducted (SB and DH) with conflicts being resolved through discussion. A total of 36 articles were identified that met the inclusion criteria. Additionally, a ‘snowball’ technique was used to collect citations of any relevant studies through forward reference searching within reference lists of included studies.28 As a result, a total of 19 additional articles were included through forward reference searching. This yielded a total of 55 full articles for inclusion in the review (figure 1).

Table 1

Scoping review inclusion and exclusion criteria

Charting and summarising the data

Data charting or extraction was conducted independently by reviewer SB, with the second reviewer DH independently reviewing extracted data for five randomly selected studies to establish concordance. Main fields of data extracted included the title, author, publication year, publication country, study population, study objectives, study design/intervention design, SM behaviours, SMS needs, SM skills of focus and key outcomes measured. The extracted data were used to collate and summarise the results using a narrative synthesis approach based on overall characteristics of included studies (years and countries of publication, study population, study design, objectives, outcomes measured and key findings).31

Results

Studies were grouped into two key areas: (1) studies describing SM behaviours and/or SMS needs (table 2) and (2) studies describing SMS interventions (table 3).

Table 2

Summary of studies describing SM behaviours and/or SMS needs (n=16)

Table 3

Summary of studies describing self-management support interventions (n=26)

Characteristics of included studies

A total of 55 articles were included in the scoping review. Several of these articles were descriptions or process evaluations of the same study, which were combined during abstraction, resulting in a total of 42 unique studies.

Study objectives

Study objectives varied between the two main groups of studies (table 2 vs table 3). Studies in the first group (table 2) described SM behaviours and/or SMS needs of patients with advanced cancer. In contrast, studies describing SMS interventions (table 3) used single cohort or randomised controlled trial (RCT) designs to test SMS interventions. The specific need addressed by the intervention depended in part on the study population. For example, for patients with advanced lung cancer, a psychoeducational intervention was delivered prior to initiation of palliative radiotherapy treatment for relief of patient symptoms of anxiety, breathlessness and fatigue.32 However, another intervention focused specifically on developing patient and family coping strategies as a SM behaviour for female patients with advanced recurrent breast cancer.33 34

Study designs

A total of 29 studies of the 42 used a dominant quantitative method, and the remaining 13 used a dominant qualitative method (table 4). The most prevalent study design was RCT to assess intervention efficacy (n=19), followed by qualitative descriptive method studies (n=7). Other types of quantitative study designs included RCTs for feasibility, cross-sectional and longitudinal observational. The remaining qualitative dominant method study designs included critical incident, phenomenological, social constructivist and literature reviews.

Table 4

Number of studies by study design (n=42)

Study populations

Included studies focused on a wide variety of advanced cancer populations dependent on each study’s objectives (tables 2 and 3). The definition of advanced cancer also varied. Advanced cancer was defined by stage (III/IV),35–37 by presence of metastases (bone,38 39 organs/lymph nodes,40 recurrence or progression of cancer33 41 and by life expectancy or prognosis).42–44 Other criteria included presence of symptoms such as pain,39 45 fatigue,40 anxiety,46 dyspnoea,32 37 or multiple concurrent symptoms,47 functional status scores,32 48–50 type of treatment being received, scheduled to be received or completed (palliative care,51–53 radiotherapy,32 54 chemotherapy55 56 and surgery57 58), timing of advanced cancer diagnosis8 35 and potential for intensive care unit admission.48

Some studies focused exclusively on a single cancer type such as breast cancer41 59 or lung cancer,32 60 or on several cancer types,36 61 while others included mixed cancers.53 62 Some studies included study populations with similar characteristics such as patients with lung cancer and patients with chronic obstructive pulmonary disease,63 postsurgical cancer and cardiac patients57 or patients receiving palliative care.51 53 Studies also focused on specific sociodemographic characteristics of cancer populations such as rurality,44 64 age43 56 65 and race and income levels.45 49 Most studies typically included both sexes in their study populations, except in the case of studies focusing exclusively on breast and ovarian cancer populations, which were based primarily on female participants.33 34 41 55 58 59 66 67

19 or 45% of total studies (tables 2 and 3), particularly interventions, also targeted a family or a single key caregiver of participants, where the caregiver was invited to participate on an optional51 54 62 or mandatory basis to form part of a patient-caregiver dyad to whom the intervention was offered.33 60

Theoretical frameworks and definitions of SM/SMS

A wide variety of theoretical frameworks were used in 22 or 52% of included studies to guide study objectives and design, with the remaining studies not reporting a theoretical framework. Generally, theoretical frameworks were based on constructs of self-efficacy or self-agency,45 60 behaviour change35 45 68 and/or SM.39 40 57 61 69–76 Self-efficacy refers to an individual’s belief in their capacity to successfully learn and perform a specific behaviour. A strong sense of self-efficacy leads to a feeling of control, and willingness to take on and persist with new and difficult tasks. The process towards adequate SM requires an increase in knowledge, skills and confidence for SM, which is defined as the level of activation for SM. Higher levels of activation reflect better capacity to self-manage an illness.77 78

A total of 12 studies (or 29% of total)8 13 39 40 49 53 59 61 66 75 76 79 80 provided a definition for SM or SMS, with three studies providing definitions specific to the context of cancer.13 79 80 Key themes included: (A) daily strategies, behaviours activities or tasks used by patients or families for medical, role and emotional management of advanced disease/treatment, (B) requirement of SM skills (problem solving, goal setting, decision making, resource use, patient–provider relationships, action planning and self-tailoring), (C) initiated by patient or by healthcare providers, (D) emphasis on being in control or independent and (E) consisting of a variety of behaviours dependent on what is important to each individual person and individual personal and contextual resources (eg, learning about disease, monitoring symptoms and side effects, cognitive or psychological actions for emotional management and/or behavioural and lifestyle changes including nutrition or routine activities).

A distinction was made between SMS and SM, in that SMS was healthcare-provider education aimed at teaching patients how to self-manage.53 Distinctions were also made for self-care and self-action. Self-care was defined as a broader more general term encompassing actions taken by individuals to maintain health and prevent illness, while self-action was distinguished as a component of SM related to the activities that patients initiate of their own volition and that are not attributable to healthcare providers.53

Studies describing SM behaviours and SMS needs

SM behaviours

Included studies described two overarching types of SM behaviours that patients with advanced life-limiting cancer engaged in (tables 2 and 5), though these were highly dependent on personal and contextual factors. The first were behaviours to control and cope with the physical components of the disease, including management of symptoms and treatment. The second were behaviours to facilitate emotional and psychosocial adjustments to life-limiting disease.

Table 5

Summary of patient SM behaviours

With respect to the first set of behaviours on control and coping with the physical components of advanced cancer, a variety of SM behaviours were used and described. For example, an average of nine SM behaviours were observed in a study sample examining fatigue symptoms in patients with advanced metastatic cancer,40 while a total of 141 self-actions or patient-initiated SM activities were described in a study on changing eating habits of ambulatory patients with advanced cancer.53 Patients engaged in behaviours such as self-monitoring and management of symptoms, coordinating and managing clinical services such as medical appointments, taking and adjusting medication based on needs and side effects, following other treatments and making decisions about treatments, following exercise and nutrition regimes, maintaining activities of daily living, accessing and seeking information and learning about cancer, goal setting, using relaxation, complementary and alternative therapies, engaging in creative activities and self-advocating.8 47 49 59 79–82 Despite these efforts, feelings of restriction due to cancer and fluctuating status and symptoms were observed in patients with metastatic cancer, which negatively impacted their quality of life.82

Included studies also described SM behaviours used to manage emotional and psychosocial facets of a life-limiting disease. A common SM strategy used by patients was denial, avoidance or distraction.14 47 49 53 82 Other SM strategies included acceptance, maintaining hope and resilience, using positive emotions, emotional expression, self-actualisation, hope, fight spirit, detachment and preparation for death.47 53 80 81 Some individuals found stability through spiritual practice of faith and prayer and through support from other individuals with cancer.49 80 Other strategies included keeping busy, maintaining and working on relationships, communicating with family, friends and healthcare providers, continuing or resuming normal work-related roles and activities such as managing finances and generally maintaining their overall quality of life.49 53 59 81 82 Patients engaged in these SM behaviours in an effort to strive for normality (to live normally) and to not succumb to the illness and a diminished sense of self.47 80 82 They took action to maintain a sense of control53 by accommodating any limitations and revaluating priorities.47 79 82

Some studies discussed potential barriers to SM faced by patients such as uptake and access to appropriate supports, time constraints, uncoordinated care and problems navigating the healthcare system.8 66 Patients can encounter difficulties putting complex regimens into practice due to task difficulty, can have a limited understanding of their disease, trajectory and type of care required, can have limited time, energy and competing priorities to acquire information and fear about making the right decision, have psychological and symptom distress, emotional difficulty and hopelessness and their caregivers may be burdened.59 79 These barriers must be considered when planning SMS.

SMS needs

Included studies demonstrated a wide variety of SMS needs for patients with advanced, metastatic and chronic cancer (table 2). Needs were related to issues faced by patients due to their illness burden but also related to care expectations and requirements from healthcare providers for effective SM. Needs were not always explicitly defined as SMS needs within included studies, and in some studies were more generally framed as health-related quality of life issues,38 patient needs from healthcare providers47 52 and symptom management needs.8 From such studies, SMS needs were inferred and extracted.

Patients demonstrated a significant need for SMS for the physical consequences of advanced disease such as the management of chronic and often cyclical and unpredictable symptoms8 47 82 as well as related treatments such as multiple medications for cancer and other comorbidities.49 Patients also emphasised psychosocial issues such as worry about loss of mobility, burden on others such as family members and disease progression.8 38 47 This also translated to SMS needs of being able to live as normally as possible by continuing with daily tasks and role activities such as employment and relationships, through the ability to perform self-care/SM.8 14 38 80 Moreover, due to the central role of family and friend caregivers in providing physical and emotional support, the SMS needs of this population group were recommended for consideration.80 Points of transition from one point in the disease trajectory to another, such as to the chronic phase, demonstrated a need for revaluation of chronic symptoms, psychosocial needs and appropriate services required.8 59 Concerns about imminent death47 and uncertainty8 66 were also observed, likely due to the life-limiting nature of advanced cancer,13 requiring specialised support.47 79

Recommended strategies for provision of SMS included recognising the patient as the expert of his or her own illness, implementing strategies to empower patients to self-manage and tools to aid SM so that patients can self-act in response to their own problems.47 49 53 63 Provision of SMS needs to be situated in productive patient–provider interactions and partnerships involving a concordance or negotiated approach to decision making related to the management of symptoms and treatment,52 58 63 should have tailored coping strategies for each individual based on their personal and contextual resources49 53 and should provide ongoing and coordinated coaching, guidance and support through the various facets and transitions within the illness trajectory of a chronic, advanced and life-limiting illness.8 47 52 80 81 Patients want to share their fears and worries (emotional concerns), life and role limitations (psychosocial concerns) and symptom and treatment concerns (both controllable and uncontrollable) and require active listening and holistic understanding from their healthcare providers who they trust and look to for explanations on what to expect and assist them in their coping behaviours.52 66 79 81 For example, patients have several strategies they use when taking medications, some of which can be unproductive to their treatment, and hence need support from healthcare providers to understand their specific concerns and reasoning, explain the purpose of medications and provide guidance on correct medication practices.52 The focus of SMS should also be on the alleviation of distress related to uncontrollable symptoms, a facet of advanced disease,79 as well as partnerships with patients, caregivers and healthcare providers to prevent emergency room admissions.63

Empowerment, along with learning new skills, encouragement, family caregivers and healthcare providers becoming partners in SMS, knowing what to expect, and creating supportive networks, can act as facilitators of SM by patients.59 66 In one study with primarily postsurgical advanced cancer patients , patient perceptions of empowering nurse behaviours were found to be significantly positively associated with patient activation measured 6 weeks postdischarge, which in turn was significantly positively associated with functional mental health status also at 6 weeks postdischarge, demonstrating the importance of patient empowerment.57 Patients also require access to appropriate information52 81 and strategies for managing daily living other than conventional medicine, such as through strategies of relaxation, distraction and limitation of activities as needed.80

Interest and ability to self-manage

Studies demonstrated a variance of interest from patients to participate in SM activities (from active to passive).59 66 Ability and willingness to self-manage were noted to be influenced by previous experiences, such as when negotiating transitions in the illness trajectory.66 SM was found to also impose a burden of responsibility on patients due to emphasis on continuous monitoring of symptoms, patient anxiety on accurately self-reporting symptoms, feelings of urgency associated with decision making for disease management and the constant need to optimise disease management practices in order to improve well-being.47 This may also arise due to patient inability to self-manage severe episodes of disease burden, including new or irregular symptoms, which may require relinquishment of control to healthcare providers and health service utilisation.63 To tackle this, some patients can take a one step at a time approach to SM addressing imminent issues first, thereby reducing feeling overwhelmed, anxious, fearful and uncertain.66

Studies describing interventions to address SMS needs

Intervention characteristics

Overall, the interventions included in this review addressed a single or several SMS need/s and/or enabled patients to adopt SM behaviours (table 3). Interventions largely fulfilled one or more of the following four key purposes56: (A) development of knowledge on the disease, symptoms, associated strategies and related work32 45 51 68 83; (B) skill development to manage the disease and symptoms including practising of skills and carrying out the work37 39 41 46 61 75 76 84; (C) behavioural reframing or patient activation to be able to adopt and sustain new behaviours34–36 55 56 60 67; and (D) provision of care coordination, support and/or guidance via information booklets or through a trained expert.44 48 54 58 62 64 65 85

Since studied interventions varied on objectives and target populations, this lead to a variety of intervention designs and approaches (table 3). For example, several studies used coaching to teach skills to patients and/or their caregivers.48 51 54 Other studies tailored educational material and support to be relevant to each patient.33 34 36 44 46 64 84 Moreover, some interventions were designed to be innovative models of care for delivery of palliative care such as models for early palliative care.44 64 These interventions incorporated elements of SMS within the design of new models for palliative care.44 48 51 83

Interventions used a variety of individuals to administer the intervention, with the key underlying theme being presence of an individual to provide SMS in each of the included interventions. This individual varied based on the content and design of the intervention being delivered. For example, some interventions used nurses,48 58 62 while others used health educators, psychologists and other healthcare professionals depending on the type of support being provided within the intervention.42 43 46 67 83 84 Through these individuals, interventions used a variety of delivery modalities including use of education booklets and/or pamphlets,32 39 50 60 inperson or face-to-face contact,42 43 telephone44 64 65 and internet-based support such as webpages,85 chat rooms85 and email65 or a combination of the above.

Additionally, interventions ranged in their duration or dosage from a single follow-up 1-week postbaseline session,41 all the way to monthly follow-ups until time of death for patients with prognosis of approximately 1 year.44 64 One study compared a brief and extended version of the same intervention and observed that the optimal dose for the intervention should be dependent on the targeted outcome of change.36 Study authors recommended a more extended intervention if targeting the outcome of patient self-efficacy, while a briefer intervention may be sufficient if targeting outcomes of healthy behaviour change.36 Moreover, another study discussed the difficulties in providing a structured and timed intervention for patients often on symptom trajectories that may be dynamic and difficult to predict.61

SM skills addressed

Overall, extraction of SM skills from the studies included in this review proved difficult due to the absence of direct reference to the SM skill(s) being addressed by interventions. SM skills were inferred by referring to the definition of each skill as a guide. The following definitions for each SM skill were used: (A) problem solving or teaching patients how to solve problems in the management of their disease, (B) decision making or the provision of sufficient information and education that enables patients to make informed choices, (C) resource utilisation or developing the ability to seek out relevant resources for care, (D) patient–provider relationships or being able to build partnerships with care providers as teachers and partners and (E) taking action towards concrete health goals.29 59 86

The majority of interventions were focused on the development of one to four SM skills, with one study65 87 addressing all five. The most frequently developed SM skills in included studies were decision making and taking action including goal setting (n=16 each), followed by problem solving (n=15) and patient–provider relationships including development of communication skills (n=14). The SM skill of resource utilisation was developed in three studies,46 65 83 84 87 demonstrating the absence of focus in interventions in the development of patient abilities to seek out appropriate resources for care. This may have been due to the emphasis and provision in some interventions of a navigator or care coordinator who may have taken care of this SM activity on behalf of patients.48 67 Four intervention studies did not report specific SM skills being targeted.

Outcomes measured

A wide range of outcomes were measured within interventions and using a variety of different instruments. The most commonly measured outcomes were patient symptoms (n=25) including specific physical symptoms such as pain,39 45 85 fatigue40 61 85 and dyspnoea,32 37 50 more general symptom prevalence and/or functional status35 40 42 48 57 61 65 67 87 and psychosocial symptoms such as anxiety and depression.46 55 62 68 Following patient symptoms, the most frequently measured outcome was quality of life and well-being (n=17).41 44 51 55 67 88 Healthcare utilisation outcomes, such as days spent in hospital, were measured in three studies.44 48 51

Specifically to the concepts of SM and SMS, measurement occurred in the areas of self-efficacy and behaviour change. Self-efficacy was measured in a total of six separate studies.36 60–62 67 68 In contrast, a total of nine studies focused on assessing change in knowledge/behaviours as a measured outcome. The specific changed behaviour was dependent on each study’s objectives but included problem-solving ability,83 pain and self-care behaviour61 and coping strategies.33 34 36 55 83

Discussion

This study describes the SM behaviours, SMS needs and SMS interventions for patients with chronic, advanced and life-limiting cancer. Using a scoping review method, 42 studies (55 articles) were examined, including quantitative and qualitative dominant methods of inquiry. These studies showcased rich findings for populations that have not been extensively studied in relation to SM.

Overall, patients engage in a variety of SM behaviours (table 5) and have an extensive need for SMS. Patient needs for SMS fall within the domains of managing complex, cyclical and chronic symptoms and the impact of those symptoms on the psychosocial aspects of daily life. Patients demonstrated a need for support with the physical consequences of their illness and the emotional repercussions of living with a life-limiting illness that require specialised support such as an aptitude for active listening, empowerment of patients and supporting them through whichever productive SM strategy they chose to use. The specific set of behaviours patients engage in can vary based on individual and contextual resources, and the best approach may be to provide a generalised SM skillset to patients through which they can manage their individual illness trajectories. In such a model, the patient is considered the expert, partnering with healthcare providers to receive support and make decisions that are optimal for their well-being. However, interventions reviewed within this study placed a specialised individual or healthcare provider as the demonstrator, teacher or expert in SM, in contrast to findings on the SMS needs for this patient population. Future research should examine how we can best organise the present healthcare system to support an expert patient-oriented SMS model for this patient population, where patients and healthcare providers are partners in achieving SM. Integrating this model in existing models of care for this patient population, such as palliative care, can ensure patient needs for SMS are addressed.

Moreover, although researchers are testing interventions that meet SMS needs of patients, before they can be effectively implemented, several key actions need to be taken. First, there are inconsistencies within the literature on how advanced cancer is defined and more importantly how SM and SMS is defined for the advanced cancer population. Without a consistent definition of SM and SMS founded in a sound conceptual and theoretical framework, it is likely to be difficult to understand what patients need and therefore design interventions that can address patient SMS needs. SMS was defined and measured as a key construct only in a handful of studies. This poses the question of whether within reviewed interventions, adequate or sufficient SMS was provided. As such, having a specific definition of SM and SMS for patients with chronic advanced diseases becomes detrimental.

Although this study generally excluded studies focused solely on the SMS needs of caregivers, it became apparent that the inclusion of caregivers in meeting the needs of this specific patient population may be necessary. Several studies included or recommended caregivers as integral or optional partners for patients, thereby underscoring the necessity of examining the role of caregivers in the SM behaviours of patients. Examining the SMS needs of caregivers may be equally important to ensuring sustained SM without undue burden, particularly if the patient lacks the ability, confidence or will to self-manage their progressive advanced disease.

Finally, this review found a large gap in population-based and longitudinal studies examining SM behaviours and SMS needs. While qualitative studies provided rich insight into understanding these constructs, future research should prioritise the understanding of patient SM at a population level, in an effort to improve understanding at the population-level of how the provision of effective SMS can impact health system utilisation and improve quality of life for these patients long-term.

Limitations

This study has some limitations; the most notable being the absence of a universal definition of SM and SMS observed in included studies. As a result, to some extent the SM aspects within studies were inferred, which may lend itself to bias. Moreover, this study examined the SM behaviours and SMS needs of patients with a wide breadth of advanced cancers. However, these behaviours and needs may vary by cancer type due to differing disease trajectories and experienced illness burden. As such, the general understanding and recommendations provided by this review may not necessarily be ideal for all patient scenarios and needs. Nevertheless, findings from this review can provide the underlying understanding and foundation of knowledge based on which specific, tailored interventions and models of care can be developed and established for different advanced cancer populations. Differences due to sex, race, age, socioeconomic status and geography must also be considered as studies in this review have highlighted. Finally, although this study’s objectives of understanding the breadth of literature examining the SM behaviours, SMS needs and SMS interventions for patients with chronic, advanced and life-limiting cancer have been fulfilled, a quality appraisal was not performed on included studies. Thus, some bias may present itself from the inadvertent inclusion of poor quality studies. Future research should include a systematic review on the subject topic in order to flush out poor quality studies and to better understand the overall impact of the provision of SMS interventions on patient and health system outcomes.

Conclusions

Patients living with chronic, advanced and life-limiting cancer engage in a variety of SM behaviours and in turn have extensive SMS needs. SMS interventions addressing these needs should base themselves on sound and consistent theoretical and conceptual frameworks and be tailored to meet the needs of patients with different cancer subtypes. Future research should examine how an expert patient-oriented SMS model can be incorporated into existing models of care and how meeting SMS needs can impact health system utilisation at a population level.

Acknowledgments

The authors would like to acknowledge the guidance of Ms Vincci Lui (University of Toronto Libraries) in the development of the search strategy for this scoping review.

References

Footnotes

  • Twitter Follow Suman Budhwani at @sumanbudhwani

  • Contributors All authors were involved in the design of the study. SB and DH conducted the scoping review. SB conducted the analysis and wrote the manuscript. All authors reviewed and revised the work for intellectual content.

  • Funding The primary author is supported by grants from the Ontario SPOR Support Unit and the Ontario Ministry of Health and Long-term Care to the Health System Performance Research Network, as well as funding from the School of Graduate Studies, University of Toronto.

  • Disclaimer The views expressed in this paper are the views of the authors and do not necessarily reflect those of the funders. The funders had no influence on the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review or approval of the manuscript.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Presented at Components of this work were presented at the Canadian Association of Psychosocial Oncology Conference in May 2018.

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