THE EFFECTS OF CARE COORDINATION ON SYMPTOMS AND QUALITY OF LIFE ON CANCER PATIENTS UNDERGOING TREATMENTS a SYSTEMATIC REVIEW

THE EFFECTS OF CARE COORDINATION ON SYMPTOMS AND QUALITY OF LIFE ON CANCER PATIENTS UNDERGOING TREATMENTS: A SYSTEMATIC REVIEW Tran Thuy Duong RN, BSN Supervisor: Dr.. Keywords Care

THE EFFECTS OF CARE COORDINATION ON

SYMPTOMS AND QUALITY OF LIFE ON

CANCER PATIENTS UNDERGOING

TREATMENTS: A SYSTEMATIC REVIEW

Tran Thuy Duong

RN, BSN

Supervisor: Dr Kimberly Alexander

Submitted in fulfilment of the requirements of the degree of

Masters of Nursing (Coursework)

School of Nursing and Midwifery

Faculty of Health Queensland University of Technology

July 2015

Keywords

Care coordination, cancer patients, treatments, symptoms, systematic review, and quality of life

Abstract

Background: Patients living with cancer experience poor symptoms and quality of

life during and after treatments As supplementary to usual care to improve symptoms and QoL, nursing interventions such as care coordination or nurse navigation are increasly used in cancer cares

Objectives: The main objective of this systematic review was to evaluate the

effectiveness of care coordination on symptoms and QoL of cancer patients receiving active treatments

Methods: A systematic, computerized search in CINAHL, MEDLINE, PUBMED

and PsycINFO was conducted Included studies in this review were measured symptoms or QoL in patients cared for by care coordination as a primary outcome measure In total, 3626 published articles were identified and 16 studies were reviewed that met the inclusion criteria and methological quality standards

Results: The effect of care coordination in symptom improvement was documented

in pain, fluid intake, sleep and rest, mobility, sociability, physical safety, body image and sexuality, while other symptoms were not improved Also, few studies provide evidence for better QoL scores and other subdomains However, this review cannot provide a qualified conclusion about the relationship between care coordination and symptoms and QoL The main reasons for this include: limited number of studies, inconsistencies across the included studies, and the poor quality of the included studies

Conclusion: There was insufficient evidence to evaluate whether care coordination

is effective in cancer patients’ QoL while undergoing treatments Future research

needs to be conducted to understand the effect of care coordination on cancer patient symptoms and QoL

Table of Contents

Keywords i

Abstract ii

Table of Contents iv

List of Figures vi

List of Tables vii

List of Abbreviations viii

Statement of Original Authorship ix

Acknowledgements x

Chapter 1: Introduction 1

1.1 Background 1

1.2 Problems 3

1.3 Significance 3

1.4 The purposes of the project 4

1.5 Summary 5

Chapter 2: Literature Review 7

2.1 Cancer symptoms on patients undergoing treatments 7

2.1.1 Chemotherapy 7

2.1.2 Radiotherapy 8

2.1.3 Stem cell transplant and Bone marrow transplant 9

2.1.4 Immunotherapy 10

2.2 Quality of life on patients undergoing cancer treatments 12

2.2.1 Quality of life 12

2.2.2 Quality of life on patients undergoing cancer treatments 13

2.3 Outcome measure instruments 15

2.3.1 Symptom measurement 15

2.3.2 Quality of life measurement 16

2.3.3 Factors associated with symptom burdens and QoL 18

2.4 Support interventions 20

2.4.1 The gaps of usual care nursing interventions 21

2.4.2 Care coordination 23

2.5 Summary 26

Chapter 3: Methodology 29

3.1 Literature search 29

3.2 Inclusion criteria 30

3.2.1 Types of studies 30

3.2.2 Types of participants 30

3.2.3 Types of interventions/Phenomena of Interest 31

3.3 Assessment of methodological quality 31

3.4 Data extraction 31

3.5 Data synthesis 32

3.6 Methodological result 32

Chapter 4: Results 41

4.1 Demographic and sample group characteristics 41

4.1.1 Age… 41

4.1.2 Marital status 42

4.1.3 Employment status 43

4.1.4 Cancer stages 43

4.1.5 Treatments 44

4.2 Nursing Interventions 45

4.3 Outcome measure instruments 48

4.4 The effects of care coordination 49

4.4.1 The effects of care coordination on symptoms 49

4.4.2 The effects of care coordination on QoL 55

4.5 Summary 62

Chapter 5: Discussion 63

5.1 Overall symptom evaluation 63

5.1.1 Pain… 64

5.1.2 Depression 65

5.1.3 Distress 67

5.1.4 Anxiety 69

5.1.5 Other symptoms 70

5.2 Overall QoL evaluation 71

5.2.1 QoL evaluation on five studies favoured care coordination 73

5.2.2 QoL evaluation on nine studies which did not favour care coordination 81

5.3 Recommendations 83

5.3.1 Indications in research 83

5.3.2 Indications in clinical practice 85

5.4 Summary 86

Chapter 6: Conclusions 87

6.1 Summary of the systematic review findings 87

6.2 Limitations 88

References… 89

Appendices 99

Appendix A: Detailed search strategy according to databases 99 Appendix B: Critical appraisal checklists and data extraction forms from JBI MASTARI 103

List of Figures

Figure 1: The process of study selection 33

List of Tables

Table 1: Summary table of the included studies 39

List of Abbreviations

CES-D Centre for Epidemiologic Studies Depression Scale

EORTC QLQ-C30 European Organization for Research and Treatment of

Cancer Core Quality of Life Questionnaire FACT-G Functional Assessment of Cancer Therapy-General

HRQoL Health Related Quality of Life

PHQ-9 Patient Health Questionaire-9 score

QLACS Quality of Life in Adult Cancer Survivors Scale

SF-36 Medical Outcomes Study 36-Item Short-Form Health

Survey

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet requirements for an award at this or any other higher education institution To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made

Signature: _

Date: _

A special thanks to Ms Rena Frohman, who supported me in language development My writing has improved a lot; actually it would not be smooth without your help Many students said that I was so lucky when I could work with you, and I totally agree with them

My most important thanks is to my family, especially my Mom, who always encouraged me when I felt tired I would also like to thank my housemates: Tuyen, Huyen, Nguyen and little boy Tony They seem to be my second family in Australia

I cannot forget to thank my dear friends Trang and Thuy Although we live far from each other, we always share happiness and troubles in our lives

Finally, I acknowledge that I would not have learned here without the support

of Australia Awards Scholarships (AAS) Thus, I would like to give many thanks to AAS, especially to Ms Zia, Youngnam and Mr Lay who provided the most convenient learning for me in QUT

Chapter 1: Introduction

This chapter will present the background to this Master of Nursing project, which reviews cancer patients’ symptom burden and quality of life (QoL) and current nursing care interventions for cancer patients Firstly, cancer symptoms and quality of life will be discussed in relation to current treatments This will be followed by an overview of usual care and supplemental care in relation to symptom management and QoL Lastly, the gaps in current knowledge related to the current model of care for symptom and QoL management, as well as the significance and the purposes of this project will be presented

1.1 Background

Patients with cancer usually experience negative effects, which can increase symptom burden and decrease quality of life, as a result of the disease process itself and required medical treatments Across different cancer types, disease stages, or treatment methods, cancer symptoms are both prevalent and tenacious Pain and fatigue are the two most common symptoms of cancer (Laird et al., 2011; Luctkar-Flud, Groll, Tranmer & Woodend, 2007; Stark, Tofthagen, Visovsky & McMillan, 2012) Nausea or vomiting, difficulty sleeping, weight loss, losing hair or skin reactions are also frequently presented in patients undergoing cancer treatments (Cheng & Yeung, 2013; Dikken & Wildman, 2013; McQuestion, 2011) Cancer and treatment related symptoms can interfere with patients’ daily activities and their social functions, and consequently may impair their QoL To demonstrate, some studies (Andresen et al., 2012; Brandt et al., 2010; Malihi et al., 2013) were conducted to measure the QoL in cancer patients undergoing treatments Despite the

heterogeneity in cancer or treatment types, the results of these studies indicated that patients, after receiving treatments, reported poorer QoL in comparison with before receiving treatments Consequently, the medical interventions or the occurrence of treatment-related symptoms may compromise the symptoms and QoL or the social and functional well-being of patients living with cancer Hence, nursing interventions are becoming an important aspect of care to improve patient outcomes

Symptom experience and QoL of cancer patients undergoing treatments require comprehensive cancer care services To address this, many kinds of non-pharmacological nursing interventions have been applied such as educating patients about physical activities, symptom self-management or mindfulness-based therapy (Baumann, Zopf & Bloch, 2012; McCorkle et al., 2011; Piet, Würtzen & Zachariae, 2012) As the range of possible interventions increases, the choices and decisions can become more complicated for nurses, patients and their families One response to this situation has been the introduction of care coordination models Indeed, the fundamental purpose of care coordination is to provide a supplement to the usual biomedical and nursing interventions in order to increase patient satisfaction with health care services and positively impact QoL An example of care coordination is the Patient Navigators model, which is provided throughout the cancer care continuum (The National Cancer Institute, 2015) Patients and their families are supported in symptom management, the scheduling of appointments with healthcare providers, and in arranging follow-up services The implementation of care coordination seems to be a reasonable response to providing better support to patients and the health system; however the impact of care coordination has not been systematically evaluated in relation to patients’ symptom experience and QoL

Hence, his project was initiated to develop a better understanding of patient problems and care coordination

1.2 Problems

Although care coordination is commonly implemented in clinical practices, the research on the effects of care coordination has not been extensively reviewed and the studies which have concentrated on outcomes of care coordination have not concentrated on symptom management and QoL In a report on the development and principles of care coordination, Freeman and Rodriguez (2011) stated that the effects

of care coordination have not been evaluated extensively due to the limited number

of studies For example, Chumbler et al (2007) and Ozcelik, Fadiloglu, Karabulut and Uyar (2014) when assessing the relationship between care coordination and patient outcomes, only focused on hospitalization and satisfaction with care or cost Similarly, Fiscella et al (2012) only documented that care coordination could actually improve patients’ satisfaction and the quality of cancer care services without mentioning symptom management or QoL Moreover, studies, which have examined the relationship between care coordination and symptoms and QoL, commonly have assessed symptoms and QoL as secondary outcomes (Jahn et al., 2008; O'Sullivan et al., 2011) Hence, because these studies have not measured a range of confounders, the results may be not evaluated in terms of care coordination’s efficacy Therefore, the evidence for the value of care coordination on symptoms and QoL on cancer patients undergoing treatment needs to be considered more comprehensively

1.3 Significance

The findings of this project and systematic review may significantly contribute

to evaluating the role of care coordination in relation to management of cancer and

treatments related to symptoms and QoL It is important to clearly understand how well care coordination is currently supplementing usual care Due to the complex disease processes, cancer patients receive multiple types of care including biomedical approaches and nursing interventions for symptom management In addition, supplemental care such as care coordination is also being delivered to enhance treatment results However, the recent development of care coordination indicates gaps which can better inform patient management and identify the demands for future studies Hence, this study will provide health providers with knowledge about care coordination and the benefits of care coordination in terms of symptom

management and QoL

Furthermore, it is also important to evaluate the current evidence regarding the impact of care coordination on symptom management and QoL This is important because before recommending interventions to clinical practice, each intervention needs to have demonstrated effectiveness Therefore, this review will evaluate and synthesize the findings of previous studies to indicate future directions for care coordination in relation to patients’ symptom experience and QoL

1.4 The purposes of the project

For this project, the first purpose is to provide an overview of care coordination and secondly report on a systematic review of care coordination as a nursing intervention aiming to increase patients’ symptom management and QoL for patients undergoing treatments This project will identify the benefits regarding current knowledge related to care coordination in relation to patients’ symptom experience and QoL for both patients and health providers, and provide recommendations for clinical practice and future research

1.5 Summary

Cancer patients experience complicated treatments which require comprehensive care services Nursing interventions include many strategies which are designed and delivered to patients to manage symptom experience and improve QoL In order to improve the effectiveness of treatments and nursing care, supplemental care such as care coordination is provided; however, the effects of this intervention are not well understood This project aims to provide a comprehensive description of cancer patients’ symptoms and QoL, and care coordination, so as to provide appropriate conclusions and recommendations about the application of this supplemental care in clinical practice

Chapter 2: Literature Review

The following literature review has three sections: cancer treatment choices, quality of life, and supportive care In section one, the state of symptoms for cancer patients receiving treatments will be discussed, followed by the side-effects of four common cancer treatments including chemotherapy, radiotherapy, stem cells or bone marrow transplants and immunotherapy To better understand the management of symptom burden caused by both the cancer processes and the treatment effects, section two will define QoL, which is a common consideration, used to evaluate intervention impacts on cancer care In addition, this section will discuss how QoL is reduced by cancer treatments, and common factors associated with QoL Section three briefly introduces limitations of current nursing interventions used in usual cancer care, which consequently has led to the presence of care coordination to improve patient outcomes, in particular to decrease symptom burden and increase QoL

2.1 Cancer symptoms on patients undergoing treatments

Cancer and cancer treatments can cause a range of symptoms including pain, fatigue, vomiting and loss of appetite and weight The following sections will discuss how cancer treatments negatively impact on patients’ symptoms and Qol

2.1.1 Chemotherapy

Chemotherapy is one of the most common treatments in cancer, and can negatively impact physical health, emotional health and lead to other health issues Chemotherapy is used to kill cancer cells or delay cancer cell growth, and thus improve cancer symptoms (Cancer Australia, 2015) It can be used alone or with

other treatment methods, depending on type, stage of cancer or size of malignant tumors (Sugerman et al., 2013) When managing cancer burden, both patients and health providers need to acknowledge that although chemotherapy kills cancer cells,

it is associated with negative symptoms as well Patients undergoing chemotherapy may experience problems with physical health such as nausea and vomiting, hair loss, weight gain or weight loss, mouth ulcers and infections, diarrhea or constipation, menopausal symptoms, skin or nail changes or reactions, nerve and muscle problems and swelling in the arms and legs (DeHaven, 2014; Goedendorp et al., 2012; Gozzo et al., 2014; Trüeb, 2010)

Chemotherapy may also affect a patient’s emotional health by causing fatigue and anxiety or depression (Scialdone, 2012; Sugerman et al., 2013) These side effects may impact clinical outcomes For example, nausea and vomiting, which are two distressing symptoms for patients, may result in nutritional depletion, poor performance, and poor mental status (Dikken & Wildman, 2013; Scialdone, 2012)

In addition, chemotherapy can lead to other health issues including cardiac conditions, anemia or neutropenia (Monsuez et al., 2010; Scialdone, 2012) Furthermore, long-term side effects of chemotherapy include infertility Reinmuth et

al (2013), who examined the fertility in adults who received chemotherapy and radiation in childhood, found 14.1% and 24.4 % of female and male participants, respectively, were classified as “possible infertile” Thus, chemotherapy is a common cancer treatment; however its side effects are diverse in terms of physical, emotional and health impacts

2.1.2 Radiotherapy

Radiotherapy is used in cancer treatment to kill cancer cells or reduce cancer symptoms, but it also negatively influences patient’s health Radiation therapy

destroys or injures cancer cells so they cannot multiply This anti-cancer method is also used to reduce malignances’ size, pain and other symptoms (Cancer Australia, 2015) Radiotherapy is administered on its own or as a part of combined modality treatment (Sammut & Arumainathan, 2013) Similar to chemotherapy, radiotherapy can have negative effects, which challenge patients and health workers as they attempt to manage physical health impacts including: fatigue, nausea, loss of appetite, dry, red or itchy skin, digestive problems, cough or shortness of breath One

of the most common side effects is an acute skin reaction for around 80% of cancer patients treated with radiotherapy (McQuestion, 2011) Acute radiation-induced skin reactions can lead to itching, pain or diminished aesthetic appearance and subsequent decrease in quality of life (Salvo et al., 2012) Furthermore, radiotherapy may impact

on fertility in both men and women (Balcerek et al., 2012; Reinmuth et al., 2013) Also, cancer patients may be at risk of radiation-induced secondary cancer after treating by radiation therapy (Lee, Lee, Sung & Yoon, 2014; Paganetti et al., 2012; Stokkevåg et al., 2015) In two articles, Elumelu-Kupoluyi, Adenipekun and Ntekim (2013) and Watts (2014) stated that secondary cancer was associated with an increase of symptom burdens, especially pain, distress symptoms and cancer-related fatigue In summary, radiotherapy has side-effects which can impact on symptom burden and may be associated with on-going cancer cell growth Therefore, a comprehensive care service including supplemental care is necessary to better manage complicated patient conditions

2.1.3 Stem cell transplant and Bone marrow transplant

Stem cell or bone marrow transplant is considered another effective cancer treatment; however, its side effects are similar to chemotherapy or radiotherapy Transplantation is a procedure that replaces a person's cancer stem cells with healthy

ones (The National Heart, Lung and Blood Institute, 2011) There are two kinds of transplantation, which are allogeneic and autologous transplant (Leukemia Foundation, 2015) Allogeneic transplants replace patients’ cells with haemopoietic stem cells which come from the bone marrow, peripheral blood or umbilical cord blood of a donor who may be the patients’ family member or a volunteer Autologous transplants replace patients’ cells with their own peripheral blood or bone marrow (Lennard & Jackson, 2000)

The complications of stem cell and bone marrow transplant have been studied for many years For example, in a research of the side effects of bone marrow transplant (Bellm, Epstein, Rose-ped, Martin & Fuchs, 2000), the authors reported that mouth pain, nausea and vomiting, diarrhoea, and fatigue are the most debilitating side effects of their transplants Although their study was conducted 15 years ago, the results have been replicated more recently (Bos-den, Potting, Bronkhorst, Huysmans

& Blijleven, 2014; Cohen et al., 2012)

In addition, it is also well documented that transplants have long-term side effects including increasing the incidence of diabetes and hypertension and secondary malignancies or late relapse of the primary disease (Andersson, Ahlberg, Stockelberg, Persson, 2011; Cohen et al., 2012; Mohty & Mohty, 2011) Thus, although this therapy is an effective treatment, some unexpected short-term and long-term symptoms can occur including mouth sores, nausea and vomiting and fatigue, which require diverse nursing interventions

2.1.4 Immunotherapy

Immunotherapy is a new method which is promising in cancer treatment but negative effects have also been documented Cancer immunotherapy uses the body's own immune system to treat cancer, stopping or slowing the growth of cancer cells

(McNutt, 2013) There are two common types of immunotherapy, including monoclonal antibodies, non-specific immunotherapies, and cancer vaccines First, monoclonal antibodies destroy proteins, which support the growth of the cancer cells,

on the surface of cancer cells It can also directly deliver radiation or powerful drugs

to cancer cells to prevent these cells from growing rapidly (Scott, Wolchok & Old, 2012) However, health providers should consider its use because according to Hansel, Kropshofer, Singer, Mitchell & George (2010), this treatment can lead to serious severe side effects including: immune reactions, infections, platelet and thrombotic disorders, skin reactions, rashes, low blood pressure, and flu-like symptoms, such as fever, chills, headache, weakness, extreme tiredness, loss of appetite, upset stomach, or vomiting

The second type of immunotherapy, which is referred to as non-specific immunotherapies, includes two common protein functions: interferons and

interleukins Interferons support the immune system in fighting or slowing the

growth of cancer cells, while interleukins help the immune system produce cells that destroy cancer Both types of non-specific immunotherapies have the same side-effects of increasing symptom burden such as: flu-like symptoms, an increased risk

of infection, rashes, thinning hair, weight gain and low blood pressure (Yoshomoto

& Morishima, 2009) Consequently, although immunotherapy shows promise in theory as a cancer treatment, all types of immunotherapy are well documented as providing negative effects on patient symptoms and future requiring comprehensive care management

In summary, the treatments including chemotherapy, radiotherapy, stem cells

or bone marrow transplants and immunotherapy are well recognised as being front line treatments in preventing cancer progress However, despite the advantages of

these treatments, it is recognised that they also lead to worse symptoms for patients These treatments may result in common symptoms such as pain, nausea and vomiting, fatigue, loss of appetite, weight loss, poor performance and mental status;

or specific symptoms such as hair loss, skin reactions and infertility The complexity

of patient symptoms causes significant management challenges for both patients and health providers, requiring an evidence-based nursing care approach

2.2 Quality of life on patients undergoing cancer treatments

QoL is commonly recognised as a key criterion in both research and clinical settings Cancer patients undergoing treatment are impacted by both the disease itself and the treatments It can be seen that the complicated progress of the cancer and patient symptoms presents problems for patients in terms of QoL In particular it is well documented that cancer patients experience reduced QoL Hence it is important

to consider QoL factors including physical, functional, emotional and social being to ensure they are considered when managing care for cancer patients

well-2.2.1 Quality of life

In order to evaluate the efficacy of any supportive care intervention, health professionals need to have a deep understanding of multidimensional concepts associated with QoL For over 20 years, many authors have provided different definitions of QoL For example, the World Health Organization Quality of Life Group (1995) expressed QoL as an individual’s awareness of their position in life, relative to their expectation, standards, goals and concerns; while other authors commented that QoL should be associated with life conditions and personal satisfaction (Borthwick-Duffy, 1992) Most authors agree that QoL is a multidimensional construct consisting of many domains: physical health,

psychological condition, spiritual concern, social relationships, environmental features and level of independence and development (Felce & Perry, 1995; WHOQOL, 1997; Norkin, Hsu & Wingard, 2012) QoL is essential to cancer patients and has emerged as a significant area of research alongside survival endpoints Addressing QoL can result in better communication between patients and clinicians, better patient satisfaction, improved treatment adherence, and less stress to the health

worker teams (Norkin, Hsu & Wingard, 2012) Hence, comprehensive QoL

assessment is an important aspect in caring for cancer patients

2.2.2 Quality of life on patients undergoing cancer treatments

QoL can be reduced by cancer symptom burdens and treatment side-effects During the intense period of treatment, cancer patients will experience a range of possible complications, which are caused by disease, treatment methods or both, including pain, fatigue, nausea, sleep disorder, spiritual uncertainty, distress, mood disturbance, or relationship challenges (Manitta, Zordan, Cole-Sinclair, Nandurkar & Philip, 2011) First, the reduction of QoL is well documented in patients receiving chemotherapy For example, Malihi et al (2013) measured the QoL in a total of 63 acute leukaemia patients before and after chemotherapy The results showed that the mean score for global QoL decreased significantly from 60.31 (SD=20.65) to 50.39 (SD=17.5) after the introduction of chemotherapy (p<0.001) (greater mean score indicates better QoL) In addition, the dose of chemotherapy can remarkably influence QoL For instance, Andresen et al (2012) and Brandt et al (2010) found that patients receiving high-dose chemotherapy experienced a significant decrease in more QoL subdomains including physical, role, emotional, cognitive, and social functioning than those who received conventional chemotherapy Although Oeyen et

al (2013) indicated in their research that QoL improved after one year of receiving

chemotherapy, compared to their QoL at three months, it was still lower than at baseline Thus, over many years researchers have investigated how chemotherapy affects QoL at different points in the treatment process While there are some differences in findings, overall there is consensus that the chemotherapy reduces QoL

In addition to negative effects of treatments on QoL, patients receiving radiotherapy and stem cell transplant report the same problems as patients receiving chemotherapy In a longitudinal study of the impacts of radiotherapy on QoL, Yucel

et al (2014) concluded that radiation significantly influenced patients’ QoL On the other hand, Roper, Cooley, McDermott & Fawcett (2013) suggested that QoL would improve at one month post-treatment and remain at three and six months if patients received supportive care services while undergoing radiotherapy They indicated that 13% of the sample had significant emotional distress at baseline, but this decreased

to 8% over time, and their intimate relationships such as family and friends or sexual partners, economic issues, nutrition and fitness were also enhanced if the supportive care services were used after treatment In addition, people receiving stem cell transplant were recorded with lower QoL than those receiving chemotherapy or radiation therapy Sundberg, Wettergren, Frisk and Arvidson (2013) measured individual QoL without predetermined elements Respondents were allowed to nominate the most important areas of their life and rate their current functioning or satisfaction with each area The result of this study stated that the stem cell transplant group reported more negative than positive consequences in comparison with those treated conventionally, although both groups reported the same important life areas Thus, from the mixed findings of these studies, it is reasonable to conclude that chemotherapy, radiotherapy and stem cell transplant may reduce QoL in cancer

patients This leads to a clear need for care services which can comprehensively support patients in improving QoL, while they are treated for cancer

In summary, QoL is a multidimensional concept which contains domains of physical health, psychological condition, spiritual concern, social relationships, environmental features and levels of independence and development Similar to the review of symptom burden, poor QoL is well documented in patients undergoing treatments This problem may be caused by disease conditions or the negative effects

of treatment Hence, to successfully cope with complicated QoL, supplemental interventions should be provided in conjunction with usual care interventions

2.3 Outcome measure instruments

In order to evaluate the efficacy of any supplemental intervention, health professionals need to have a deep understanding of a wide range of symptom measurement instruments and the factors which can be associated with the results of the measurement

2.3.1 Symptom measurement

Symptoms are commonly assessed individually by symptom-specific instruments One symptom can be assessed by different types of instruments, which requires health professionals to consider the purpose of the assessment To demonstrate, it is recommended that comprehensive pain such as cancer pain be assessed by well-validated instruments such as: the Brief Pain Inventory (BPI), the Chronic Pain Grade Scale (CPGS) or the McGill Pain Questionnaire (MPQ) (Hjermstad et al., 2011) These pain instruments are multidimensional scales which are commonly used to assess both the quantity and quality of pain However it is recognised that these instruments require patients to have sufficient experience wit h

the tools or supervisors to firstly help them complete the questionnaire due to the complex vocabulary used on the instruments (Hawker, Mian, Kendzerska & French, 2011) There are other simple scales which take less time and can be used by patients themselves such as the Visual Analogue Scale (VAS) or the Numeric Rating Scale (NRS) (Hjermstad et al., 2011) However these instruments are single-item scales, so they assess pain intensity only

Another example of symptom assessment is for depression Depression symptoms can be examined using two instruments: Centre for Epidemiologic Studies Depression Scale (CES-D) and Patient Health Questionaire-9 score (PHQ-9) (Smarr

& Keefer, 2011) These instruments are designed with a list of questions to evaluate the level of depression patients are experiencing However the CES-D measures the current level of depression in the general population including both people with and without medical problems, whereas the PHQ-9 is used to detect and measure depression in medical populations Furthermore, the CES-D, which is a self-reporting tool, assesses perceived mood and level of functioning during the past week, while the PHQ-9 is used by health professionals to assess signs of depression over the previous two weeks As a result, as health professionals evaluate the effectiveness of supplemental interventions, they must consider the wide range of reporting styles for symptoms in terms of purposes, population and patient experience

2.3.2 Quality of life measurement

A well-recognized method for assessing QoL is through a questionnaire, which includes items or subscales covering multiple domains of QoL Typically, each question has different levels of answers, which are rated on a 4- or 6- point scale Domain or total QoL score can then be calculated based on scoring algorithms and are often presented using mean scores In most tools, higher marks denote greater

perceived QoL There are many available questionnaires including: the European Organization for Research and Treatment of Cancer Core QoL questionnaire (EORTC QLQ-C30), the Quality of Life in Adult Cancer Survivors (QLACS) scale, Functional Assessment of Cancer Therapy—General (FACT-G), or the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36)

Although these QoL instruments have been validated in many cancer studies (Grulke, Albani & Bailer, 2011; Kontodimopoulos, Samartzis, Papadopoulos & Niakas, 2012; Scott et al., 2013; Smith, Cocks, Parry & Taylor, 2014; Yost et al., 2013), there is uncertainty about which QoL instrument should be recommended for use Indeed, these instruments assess QoL, but they are different in their structure, social domains, and tone (Luckett et al, 2011) For example, with respect to scores, the FACT-G presents five scores of specific interest, whereas the EORTC QLQ-C30 provides 15 scores In terms of the social domain, social activities and family lives are primarily assessed in the EORTC QLQ-C30 compared to social support and relationships in the FACT-G Therefore using different instruments may lead to different results, although they are used to assess and report on the same population

To exemplify this, Grande, Farquhar, Barclay and Todd (2009) used both EORTC QLQ-C30 and SF-36 to assess QoL in one sample of colorectal and lung cancer patients Patients were significantly better with global health, physical and role functioning with the EORTC QLQ-C30 result, whereas the SF-36 result indicated that patients were better in emotional and social functioning In addition, arguments over which instrument should be used still exist Sato, Shimizu and Miyashita (2014) recommended that the FACT-G is more preferred than the EORTC QLQ-C30 among cancer patients in Japan; however due to their study being conducted via an online survey and having no limitation of disease condition or cancer stages, their

conclusions may be biased Hence, when evaluating QoL as part of a comprehensive approach to symptom management the instruments, due to their differences in structure, social domain and use of instruments should be considered

2.3.3 Factors associated with symptom burdens and QoL

It is clear that symptoms and QoL are impacted by cancer treatments, however

to better manage this, health providers should understand the factors which can be associated with symptoms and QoL There is a wide body of evidence investigating individual factors that can influence symptoms and QoL; however analyses of the results show inconsistent findings The factors that are most often reviewed are income, occupation, smoking, marital status and age for a range of cancers For example, one study conducted among patients with cancer (Priscilla et al., 2011), investigated social-demographic and clinical factors The result of this study indicated that income, occupation and smoking have the strongest influence on QoL

In particular, employed or smoking patients compared to unemployed or smoking patients presented lower QoL scores; whereas high-income patients experienced better QoL than low-income patients In another study, Thomas et al (2014) also reported that low income predicted higher symptom burdens including somatic, psychological and nutritional burdens However, both previously mentioned studies were limited by one major drawback, which was their large heterogeneous samples, because they recruited both patients undergoing treatments and cancer survivors in their studies

non-In addition, marital status and age have been associated with QoL and symptom burdens in esophageal and breast cancer, but there is no evidence of this in hematological cancers In particular, marital status is a factor associated with QoL but it is not an important factor The change regarding QoL was reported in two

groups of married and single patients at baseline and one year later, however this change was not statistically significant (Miller et al., 2010) In contrast, age has been examined as a possible impact on symptoms and QoL (Arndt et al., 2004; Kornblith

et al., 2007) These authors state that with growing age, physical problems are likely

to increase In other words, elderly patients were predicted to experience poorer physical functioning which may result in poorer QoL However, the association between older age and QoL was demonstrated as not significant, or old age was not a predictor of QoL in another study (Härtl et al., 2010) Moreover, the greater impairment of QoL is well documented for younger breast cancer patients compared

to older patients in both short term and long term effects, but the results were explained as being due to the greater distress relating to work and family demands or inadequate strategies for coping with disease (Härtl et al., 2010; Kroenke et al., 2013) Thus, it is likely that the impact of age on symptoms and QoL is a confounder rather than a factor Hence, individual factors contribute to reduced symptoms and QoL score While age may not affect symptoms and QoL, marial status impacts little

on symptoms and QoL, and social-demography or individual habits significantly influence symptoms and QoL However, the lack of updated studies regarding the influence of individual factors on QoL in cancer patients needs to be addressed While it is important to identify individual impacts on symptoms and QoL, it is also important to understand the significant relationship of psychosocial factors and symptoms and QoL Psychosocial factors include social supports, interaction with family and friends and satisfaction with information In breast cancer research, there

is a strong consensus in reported findings that these psychosocial factors are strongly associated with symptoms and QoL (Härtl et al., 2010; Karakoyun-Celik et al., 2010; Leung, Pachana & McLaughlin, 2014; So et al., 2013; Penttinen et al., 2010) In a

recent critical review of the literature, Allart, Soubeyran and Cousson-Gelie (2013) indicated that initial distress, great anxiety or major fatigue are the strongest predictive variables for decreased symptoms and poor QoL in long-term survivorship

of haematological malignancies They also stated that cancer patients, who were supported by good social supports or had good satisfactory interactions with family members and friends, presented greater symptoms and QoL than those who has conflicts with family or friends However the included studies in this review were conducted more than ten years ago; thus it seems that their findings should be interpreted with caution Similar to other QoL domains, the impacts of psychosocial factors on symptoms and QoL in cancer patients need further clarification

To conclude, many kinds of instruments have been designed and implemented

in both research and clinical practice to examine symptoms and QoL Health professionals must consider which validated measurement is appropriate for patients because the purposes and structure of these instruments can influence results and interpretation of an intervention’s impact on QoL Furthermore, individual factors such as age or marital status and psychosocial factors including stress, depression or anxiety may be associated with symptoms and QoL Hence, to reliably evaluate the effects of nursing interventions in managing complex symptom burdens and QoL in cancer patients, applying an appropriate measurement instrument is identified as an important concern

2.4 Support interventions

In response to the need to manage symptom burden resulting from disease and treatment and to improve QoL, a range of interventions can be initiated to support patients In current clinical settings, the care, which is referred to as “usual care” provided to patients, includes a range of interventions: physical supports, spiritual

intervention, education or self-management However the identified limitations of usual care interventions have led to an opportunity for the development of more comprehensive management models such as care coordination

2.4.1 The gaps of usual care nursing interventions

The identified gaps in usual care interventions for patients living with cancer are related to the effectiveness and the poor coordination between health providers and patients First, although nursing interventions are implemented in cancer care, their effectiveness are still being evaluated In terms of maintaining patients’ QoL and psychological well-being by reducing anxiety or depression, self-management programs are often implemented These programs aim to improve patients’ health-related behaviours, so as to encourage them as they live with a long-term disease such as cancer (Gao & Yuan, 2011) However, in a study to evaluate the efficacy of self-care intervention in which patients did not change their behaviour, Rustoen et al., (2014) found that a possible reason for the lack of the intervention’s effectiveness was inadequate psycho-educational action Another example of self-care intervention

is pain self-management This is a common intervention in pain reduction, and its efficacy was demonstrated in a high quality research design (Koller et al., 2013); however the result of this study is contentious Indeed, the researchers failed to fully acknowledge that in self-management, patients rate pain intensity and report results

by themselves, and their personality might influence the results (Krok & Baker, 2014) As a result, patient education or monitoring from health providers is necessary

to improve the efficacy of interventions

In addition, cancer patients, in particular, are at risk of experiencing poor coordination with health providers due to lack of information or delay in care access Harrison et al (2009) stated that patients and their families complained about the

lack of information about who to meet or where to go when they need medical advice about disease symptoms, treatments or side-effects of treatments Similarly, in another study, the feeling of isolation in coping with cancer-related requirements was very common among cancer patients and their families (Fillion et al., 2009) These studies indicate the limitations in usual care as the findings show that patients need better information about disease and treatments, and want better communication with health providers so as to be supported emotionally Another factor to consider is that, the cancer patient’s journey may involve many health professionals in different treatment stages, and with the current usual care interventions, patients when coping with their conditions are often limited in communication with clinicians (Ozcelik, Fadiloglu, Karabulut & Uyar, 2014)

Furthermore, the current usual care interventions tend to overload patients The cancer treatment process is complex as it can include the combination of many methods Patients may receive many types of interventions at the same time Most current interventions focus on individual symptoms, while symptoms for cancer patients are diverse (Young et al., 2013) Thus, if patients have poorly coordinated care from health providers, they will experience additional stress in arranging interventions In addition, their treatment progress and resulting QoL may not be comprehensively assessed

Consequently, patients may need assistance in navigating their complex treatments including managing symptoms, arranging medical or nursing support in both hospitals and at home to achieve the best treatment result Also, they need to be provided with a single point of contact for information and support in their daily life Hence, care coordination was introduced as a supplement to usual care to guarantee

that the demands of patients and medical treatments are met

2.4.2 Care coordination

The delivery of care coordination originated in patient dissatisfaction with the usual healthcare services According to the Department of Health and Human Services, State Government of Victoria (2015), care coordination is a comprehensive strategy to ensure that care services are delivered to patients receiving treatments in a logical, connected and timely manner so that the medical and personal needs of the patient are met To address the fundamental needs of patients, care coordination is delivered in many hospitals and community settings using models referred to as: patient/care/nurse navigator, care coordination and supplementary program, case management or advanced practice nursing Although these models may have different names and principles, they share similarities in terms of the goal, primary objectives, participants and the domains covered by the models First, these models occur with the deliberate goal of improving care planning and increasing the continuity of care across service boundaries Thus, the primary purpose of these models is to facilitate delivery of the appropriate healthcare services in the right order and settings Also, people who are involved in these models may be patients and their caregivers and health providers including nurses, physicians, support staff, social workers or other professionals It is recognised that as the care needs grow more complex, the number of participants tends to increase (McDonald et al., 2007), necessitating better coordination

Moreover, each model’s domain, which is covered by support staff, depends on the individual patient’s needs A detailed plan of coordinated interventions is developed for a particular patient or group of patients The domains cover the common barriers, which patients may be challenged by during treatment periods, including financial barriers, lack of information and communication Thus, a

comprehensive model involves patient assessment, educating in problem-solving, treatment plans, assisting with additional medical, financial issues and related appointments, and monitoring patient progress and care These models may differ in their approaches which are used to achieve the objectives For example, one model may provide one or combined supportive care strategies including: direct meetings between health providers and patients, communicating through networking such as telephone calls or emails, connecting patients to appropriate community supports such as social or financial resources, scheduling with health professionals, following-

up tests and results, notifying patients when they have appointments, providing educational materials, and promoting treatment adherence (Carrol et al., 2010; Yosha

et al., 2011)

Care coordination is provided with the aim of using resources effectively to improve the quality of patient care services so as to reduce symptom burden and increase QoL The effectiveness of care coordination on cancer patients’ outcomes such as hospitalization, satisfaction with care has been well-documented in many studies For example, Lee et al (2011) found that patients in the usual care group stayed in the hospital on average 9.11 days longer than patients in the experimental care coordination group Also, participants in the nurse navigator group were more satisfied with the care service in comparison with participants in the control group Hence, the authors reported that nurse navigator programs had positive effects on length of hospital stay and satisfaction with care

On the other hand, the effectiveness of care coordination on patient’s symptoms and QoL has not been evaluated extensively due to the lack of reliable evidence as the quality of some studies has not be rigorous First, a majority of studies examined the relationship between care coordination and patients’ outcomes

such as hospitalization, satisfaction with care and cost-effectiveness (Blakely et al., 2015; Jingping, Goehring & Mancuso, 2015; Peikes, Chen, Schore & Brown, 2009), but not many studies examined QoL; or QoL was examined with other outcomes This leads to inconsistent results because as explained above QoL is complex and affected by many factors such as age, marital status, disease stages or symptoms (Arndt et al., 2004; Kornblith et al., 2007) Therefore these studies may be biased when assessing QoL In addition, the conclusion regarding the effectiveness of care coordination on QoL is inconclusive In some studies, the results for QoL indicated that care coordination had positive effects on symptoms and QoL In particular, Lee

et al (2011) also examined QoL beside hospitalization and satisfaction with care Although the QoL score was not significantly different before and after three months

of application of the care coordination program in the experimental group, it was significantly lower in the control group Hence, this study does not provide consensus that care coordination improves QoL; however, it provides standard evidence that care coordination has benefits for QoL or cancer care Similarly, Moore et al (2002) and Wyatt et al (2004) conducted randomized-controlled studies which examined the effectiveness of nurse case management on patient outcomes in lung and breast cancer patients respectively It was shown that the patients in the intervention groups experienced reduced dyspnoea and increased emotional function after three months of care coordination Although the authors of both studies failed to indicate the effects of care coordination intervention on other symptoms and global QoL, and their studies are over 10 years old, the influence of case management cannot be dismissed

Furthermore, from searching the literature, it seems that there is a lack of high quality studies analysing the impacts of care coordination on QoL and symptoms

experienced among cancer patients undergoing treatment To illustrate, some randomized control trials, which were high level evidence, measured the QoL in cancer populations receiving care coordination (Hendren et al., 2012; Young et al., 2013; Wulff, Vedsted & Søndergaard, 2012) The findings of these studies failed to provide a significant relationship between care coordination and QoL; however they might be at risk of bias as they were conducted in different settings such as hospitals

or communities, and different types of cancer treatments Therefore, the conclusion about the positive effects of care coordination on QoL still needs to be explored Consequently, a systematic review needs to be addressed in order to better understand the impacts of care coordination

In summary, care coordination is an intervention which shows promise of positive benefit in cancer care This is due to the fact that usual care interventions have limitations in practice and the lack of coordination creates additional stress In particular, the current usual care interventions inadequately educate and monitor observed patients Meanwhile, as a consequence of the lack of information related to disease, treatments, interventions and inconsistent communication with health providers, patients experience poor coordination with health professionals As a result, care coordination has been introduced as an effective management model to support patients and health workers, although the efficacy of this model has not been evaluated extensively Thus a more systematic review of the literature reporting on care coordination and its impacts on reduced symptom burden and increased QoL is required

2.5 Summary

Patients living with cancer receiving treatments such as chemotherapy, radiotherapy, stem cells or bone marrow transplants and immunotherapy experience

symptom burden and reduced QoL The treatments can make current symptoms more serious including physical health (pain, nausea or vomiting, fatigue, appetite loss and loss or gain of weight), psychological health (stress, depression or anxiety) They can also lead to new symptoms including skin reactions, hair loss or compromised immune systems Moreover, the negative impacts of treatments on QoL are well documented and QoL scores are a common criteria used to assess the effectiveness of interventions Because QoL can be measured with many kinds of instruments, the conclusions regarding treatment methods and their impacts on QoL scores are inconsistent and result in further confusion The complicated symptoms and poor QoL in patients undergoing cancer treatments present a problem for patients and health providers as to how to effectively manage symptoms and improve QoL Furthermore, the presences of gaps in terms of inadequate support and poor coordination between patients and care providers in current interventions indicate the demand for support interventions such as coordination A variety of care coordination models have been developed and applied in clinical practice These models are similar in their goals, primary objectives and participants However the effectiveness of care coordination has not been examined in depth due to the limited number and inconsistent quality of studies Therefore, better studies should be conducted in the future to deeply understand the effects of care coordination on patient symptoms and QoL