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The patient’s perspective on recovery from depressionSelf-management and professional treatmentvan Grieken, R.A.

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Citation for published version (APA):van Grieken, R. A. (2017). The patient’s perspective on recovery from depression: Self-management andprofessional treatment.

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1

Chapter 1

General introduction

10

Chapter 1

The present thesis offers the knowledge and experience of patients with regard to self-

management and professional treatment of major depressive disorder (MDD). It contains

a collection of studies that were conducted in an effort to thoroughly understand how

patients are able to self-manage their depression on a day-to-day basis, and what factors

of professional treatment they experience as helpful, not helpful or even harmful. In this

first chapter, the background, context, aims and research questions are described.

Depression

Major depressive disorder, from this point called ‘depression’, causes a significant

burden for patients and their carers, as it is associated with severe symptoms and role

impairment.1 The life-time prevalence of depression has been estimated at 16,2%2 and

depression affects twice as many females compared to males.3 In addition, depression

constitutes a major financial health problem in today’s society.4 Although tentative, the

World Health Organisation (WHO) estimates that depression will be the leading cause of

burden of disease in high-income countries by the year 2030.5

Although a wide range of evidence-based treatments are available, such as

pharmacotherapy, psychotherapy and additional help from psychiatric nurses, creative-

and psychomotor therapists, not all patients seek, accept or continue these treatments. If

they do, unfortunately more than 50% of all patients experience insufficient improvement.6

Although numerous studies and randomized trials have examined the genetics, etiology,

biology and treatment of depression, these percentages have not changed substantially in

the last decennium.6,7 Interestingly, scientific research, mental health care organisations

and professional guidelines mainly reflect their own perspective about what is helpful for

depressed patients, and currently, they mainly focus on short-term symptom reduction

and (cost) effectiveness.8

Therefore, there is a critical need to understand more about what is helpful for depression

from the patient’s perspective.9 Specifically, there is a need to know how patients cope

with their depression on a day-to-day basis, given the fact that depression is increasingly

recognised as a chronic disease, characterised by multiple recurrences. The recurrence

rate after a first depressive episode is more than 50%, and after the second and third

episodes, the risk of relapse rises to 70 % and 90 %, respectively,10 and as many as 20% of

the depressive episodes become chronic.11 Moreover, patients have unique experiences

regarding how they cope with depression, leading to different needs for treatment and

different uses of ‘self-management’ strategies.12 Patients may differ from one another in

11

General Introduction

1

their preferences for self-management strategies, based on e.g. gender, age, history with

depression, depression severity and other clinical characteristics.

Conceptualization of self-management

The conceptualization of self-management is confusing because several terms exist to

describe the same phenomenon, such as self-help, self-care, collaborative care and self-

management-support (SMS).13 Therefore, the conceptualization of self-management is

confusing. Although these terms are generally meant to describe a similar phenomenon,

there are distinctions between these concepts: Self-help is generally characterised

as being predominantly independent of professional contact and is intended as “a

(psychological) treatment, where the patient takes home a standardized (psychological)

treatment and works through it more or less independently”(p. 1934).14,15 Self-care is a

broad concept that describes what people do for themselves to establish and maintain

health, encompassing prevention of illness.16 Self-management is a key-component of

collaborative care, which can be described as a “multicomponent, healthcare system-level

intervention that uses case managers to link primary care providers, patients, and mental

health specialists”(p. 526).17 Self-management-support (SMS) is the systematic provision of

educational and supportive interventions by (non-physician) professionals. It is an adjunct

to conventional treatments and is aimed at preventing a relapse given the chronic nature

of disease.18 Although the terms are used interchangeably, the approaches are different.

Self-management is the most comprehensive approach to preventing and managing

depression, and therefore will be the focus of the work in this thesis.

The definition of self-management used in this thesis is the one described by Barlow

(2002):19 ‘the individual’s ability to manage the symptoms, treatment, physical and

psychosocial consequences and life style changes inherent in living with a chronic

condition’. This particular definition is used because, for depression, self-management

is not mainly aimed at (relapse) prevention, but also aimed at coping with (recurrent or

chronic) depression on a day-to-day basis. It entails the patient’s active involvement in the

management of his or her own health (care) process.

12

Chapter 1

Evolution of self-management

The development of self-management arose in the mid-1960s from chronic somatic

diseases, such as diabetes and arthritis, to increase patients’ involvement in their

treatment and control its effect on their lives.20 Self-management is currently a well-

established and evidence-based approach to a number of somatic diseases21 and many

self-management programmes have been developed worldwide. For example, for asthma,

many effectiveness studies have been conducted and have identified self-management

for the improvement of quality of life and disease severity.22 In the United States, the

‘Arthritis Self-Management Program’, developed by The Stanford Patient Education

Research Centre (http://med.stanford.edu/patienteducation) has significantly improved

behaviours, role functioning and even communication with physicians.23,24 In the United

Kingdom, the Expert Patient Program25 has been developed for people who are living with

a chronic disease,26 and in The Netherlands, self-management for several somatic diseases

such as diabetes, has become part of integrated care (‘ketenzorg’) in general practices.27

In mental health care self-management is much less widely used compared to chronic

somatic diseases because it is a relatively new approach.28 For example, for schizophrenia,

self-management initiatives are still in development.29,30 For bipolar disorders,

psychoeducation has been developed to help patients understand and manage their

disease more effectively.31 For mood and anxiety disorders, Villagi et al (2015)32 identified

self-management strategies to be used and promote recovery and symptom reduction.

But for most mental diseases, such as eating- or personality disorders, the various

professional guidelines (APA, NICE and Dutch guidelines)33-35 yet hardly mention self-

management for the use as a new approach. However, research and evidence for self-

management in mental health care is growing:28 For depression self-management, only

46 scientific publications were found in the archives of PubMed in 2000, whilst 544 articles

were found in 2014.

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General Introduction

1

Current emphasis on self-management for depression

Self-management for depression has become an important priority in today’s mental

healthcare, which could be attributed to the following social developments:

1. Autonomy and responsibility have become key concepts in our current individualized

society. Thereby, the evolution of self-management in the last decade has

accompanied the trend of collaborative care, in which the professional and the

patient share their expertise to achieve the best possible disease management. The

professional is not only seen as an expert anymore, neither is the patient a passive

recipient of care.12

2. The profound burden and prevalence of depression5 causes the public health need

for the development of new models of care.

3. Albeit a plethora of professional treatments are available, still more than 50%

of all depressive patients experience insufficient improvement.6 Therefore, the

development of new and more effective treatment approaches is needed.

4. As healthcare costs for depression continue to rise, policy makers and health care

providers are identifying ways to manage this progression.36 Self-management holds

promising prospect to be a cost-cutting strategy to reduce the financial burden of

chronic depression care.36

5. Finally, the rapid developments in the field of information and communication

technologies (ICT) further increase self-management as a promising approach,

because ICT offers great opportunities to support self-management.37

14

Chapter 1

Depression self-management in Dutch mental health care

The Dutch government emphasizes self-management approaches for depression since

2009.38,39 In 2009 the Dutch Ministry of Health, Welfare and Sport (VWS) launched and

financed the four-year ‘National Action Program Self-management’ (NAPS), to implement

self-management (support) in Dutch Health Care.40 Several recommendations were drawn

regarding depression, including development of strategies for chronically depressed

patients and education programmes in order to support patients to gain more control and

strive after ‘shared decision-making’.

Moreover, several initiatives regarding self-management have emerged in the last

decade, such as the online programmes ‘Kleur je leven’ (www.kleurjeleven.nl) and ‘Grip op

je dip’ (www.gripopjedip.nl). However, most of these programmes focus on sub-threshold

depression and prevention rather than chronic depression. They do not use professional

support and most of them make use of cognitive behavioural treatment-based approaches.

Programmes that focus on strategies for the rehabilitation of recurrent or chronic

depression are scarce. An exception is the programme ‘Het roer in handen’ for chronic

depression and anxiety which has currently been investigated for efficacy in The

Netherlands.41,42 This programme is based on a rehabilitation programme which was

developed for severe depression in 2005.43

Rapid self-management initiatives pre-date scientific developments

In addition to the programmes developed within the Dutch government, there are various

international self-management programmes that are worthy of notation. Examples

include the international web-based programmes ´Here to Help´ (www.heretohelp.bc.ca/

managing-depression) and MoodGYM (moodgym.anu.edu.au/welcome). The popularity

of self-management approaches is causing rapid self-management initiatives to emerge

that seem to pre-date scientific developments. In reviewing the scientific field of self-

management strategies for depression, Morgan44,45 has identified 48 strategies for sub-

threshold depression, which include mainly lifestyle (e.g. engage in physical activity) or

psychosocial (e.g. reward themselves for reaching a small goal) strategies. Moreover,

Coulombe et al (2015)46 constructed a Mental Health Self-Management Questionnaire

which includes strategies with themes such as ‘Empowerment’ and ‘Vitality’ for mood and

anxiety disorders, and is based on the work by Villagi et al (2015),32 who identified self-

15

General Introduction

1

management strategies used by people with depressive, anxiety and bipolar disorders.

However, strategies that focus specifically on the more severe, chronic depressed

population have not yet been identified.

Self-management for depression

Self-management for depression aims to have patients recognize changes in depressive

symptoms, take actions in solving problems and know where to find reliable and relevant

information to gain control over their lives.18 Corbin and Strauss (1988),47 two qualitative

researchers focussing on medical sociology in London, were among the first to identify

the process of self-management and defined three tasks for the chronically ill patient:

1. (Learn) to manage all the emotions associated with having depression; anger,

frustration, feelings of impotency, anxiety and sadness. The patient must adapt

his/her expectations about the (near) future.

2. Maintain, change or create new behaviour or a new role in society. For example,

a teacher who is depressed and who is known for his creative ideas must change

the way he used to teach by accepting that ideas do not come effortless anymore.

3. Learn the medical management of depression, such as the need to cope with

symptoms such as fatigue or loss of appetite, find information about depression

or search for a suitable treatment.

On the basis of these tasks, a patient first needs to accept the depression in order to be

able to self-manage the disease.

Self-management paradox

In terms of depression, the term self-management may seem rather paradoxical than

supportive. For example, it can be misunderstood for the reason that it falsely implies that

patients are responsible for the management of the disease on their own, while depressive

patients in general lack confidence, have a passive and avoidant coping style rather than

actively deal with feelings of guilt and hopelessness.48 Nevertheless, most patients agree

about their longing to gain back the control they lose over their lives. To learn to cope with

depression, learning to ‘self-manage’, can reinforce mastery. Self-management addresses

16

Chapter 1

the strength of the patient and highlights the ‘healthy part’ of the patient who is longing

for autonomy.

Effectiveness of self-management for depression

The interest in self-management for mental health diseases has developed only recently,

and little is known about the effectiveness. Ryan et al (2010)49 designed an adjunctive

depression programme for difficult-to-treat depressed patients and their families in

the USA, in an effort to help these patients and families cope more effectively with

depression. Although they only included 19 patients, they found improved patient’s

perceived quality of life and functioning, reduced depressive symptoms, and improved

perception of their family’s functioning. In Italy, Franchini et al (2006)50 created a

psychoeducational intervention for strategies to improve antidepressant treatment and

they found significantly less relapse in the group of patients who participated in this

psychoeducational intervention. However, this study was aimed at medication adherence,

not strategies to cope with depression itself.

Furthermore, in The Netherlands, a research group created a psycho-educational

prevention (PEP) programme for self-management in primary care depressed patients,

but results from this randomized controlled trial (RCT) that compared the PEP self-

management programme with care as usual (CAU) in primary care showed no evidence

for improved short-term outcomes and cost-effectiveness.51-54 However, some factors

of this RCT may help explain why no support for self-management was found. The

recruiting physicians in the CAU received a training on optimal treatment of depression

and compliance with guidelines. This training may have contributed to high rates of

antidepressant adherence in the control group and the training might have masked

the beneficial effects of self-management in real world practice. Additionally, the PEP

providers were not trained psychotherapists, the programme was characterized by

minimal face-to-face and telephone contacts and the nature of the programme might

have had too little intensity to attain major improvements.

In order to describe self-management approaches and to examine their efficacy to

understand the potential of self-management, Houle et al (2013)18 performed a systematic

review and included, among others, some of the above described studies. Houle

concluded that overall, self-management seems to be associated with reduced depressive

symptomatology and improved functioning, but the results are inconsistent with respect

to reducing relapse and recurrence rates.18 However, these findings can be explained by

17

General Introduction

1

the fact that some of those studies are dated, two pilot studies were included in the review

and most studies narrowed their target strategies on medication adherence.

Various reasons complicate effectiveness research which hampers conclusions in meta-

analyses: The different conceptions of self-management as described earlier make it

difficult to properly distinguish aims and outcomes. Self-management approaches are

heterogeneous and use e-health, booklets, (peer-led) group interventions with or without

professional support. Next, the target outcome of self-management is diverse and varies

between prevention,55 sub-threshold or ‘mild’ depression44,45 and only a scarcity of research

focuses on major depressive episodes (MDE) that fulfil criteria of DSM-IV.18 And although

self-management was originally developed for chronic diseases, to our knowledge, no

study thus far includes chronic depressive patients.

Patient’s perspective on self-management

As a consequence of the heterogeneous use of self-management, different parties (such

as policy makers and health institutions) use self-management according to their own

beliefs about good chronic care. Moreover, the majority of self-management approaches

are led and designed by professionals. However, in order to be helpful and effective for use

in clinical practice, self-management strategies should certainly also reflect the patient’s

perspective.56 Specifically, professional support that considers patients individual needs

increases effectiveness.12,57 Although the revised version of the Dutch professional

guideline for depression cautiously recommends self-management as a new approach

in the treatment of depression,35 little is known about what self-management strategies

patients use and consider helpful.58

The patient’s perspective on treatment

Despite major promising developments regarding chronic depression management and

treatment, basic knowledge is still lacking not only about what patients perceive as helpful

in coping with the daily problems caused by depression, but also about their different needs

for treatment.59 There is emerging evidence that patient’s involvement and expertise about

treatment of depression (e.g. patient preferences regarding treatment conditions, type of

treatment or therapist characteristics) influence treatment outcomes.60,61 It is necessary

to know whether and how professionals take into account the patient’s perspectives,

preferences and diversity.

18

Chapter 1

With the current extreme emphasis on biological psychiatry, most scientific approaches

aim to discover helpful treatment factors by focusing on neurobiology and the application

of the best pharmacological strategies.6 However, these approaches lose sight of the

effectiveness of common factors in treatment such as the therapeutic alliance and hope.62

In real-world patients, a professional has to focus on much more than the application of

technical approaches. With the knowledge of the patient’s perspective, professionals

have an opportunity to develop personalized treatment by adjusting the specific needs

of depression treatment for each individual patient, amalgamate shared goals, and

consequently accomplish better coping and self-management of the disease.

Patient’s, carer’s and professional’s perspective on professional treatment

Another way to broaden our view of helpful factors in the process of depression treatment

is not to only focus on the patient’s perspective, but to include the perspectives of

professionals and carers. First, professional’s perspectives about treatment often differ

from those of patients.63 For example, findings indicate that professionals’ occasional

advice for pharmacological treatment strategies are not in line with what patients prefer

(i.e., many patients tend to prefer psychological therapies).64 Second, the role of the carer

is relatively invisible, but invaluable, because they are the daily witnesses in perceiving

how treatment affects the recovery of a depressed patient. According to professional

depression guidelines33-35 the carer’s engagement into treatment is therefore highly

recommended. Altogether, patients, carers and professionals are considered the experts

to lead us in unraveling the helping factors in the treatment of depression.

Especially with the increased emphasis on engagement of patients in their own

healthcare,65 shared-decision making (SDM), a joint venture between patients and

clinicians, has become a topic of interest in today’s health care.66 SDM is a gradual

process and often involves more people than only the patient and clinician engaged in the

decision making process, including carers, and is of particular value because it provides

personalized treatment.

Overall, there seems to be a gap between professional-led treatments and vision on how to

recover from depression, and the perspectives of patients about what is helpful for them.

With the knowledge and the recommendations from the patient’s perspective, mental

health professionals have the opportunity to adjust the specific needs of depression

treatment for each individual patient and thereby improve symptoms and functioning.

19

General Introduction

1

Aim and research questions

The general aim of this thesis is to gain profound insight into the depressed patient’s

perspective on professional treatment and their day-to-day coping, using self-

management as a strategy. Based on the results, we expect to make recommendations

for clinical practice to pursue effective, efficient, personalized treatment and a truly joint

venture regarding self-management between professionals and patients.

PART IAs shown above, it is not known what self-management strategies patients use and

perceive as helpful in their recovery from- and coping with depression. The first part of this

thesis therefore aims to explore the patient’s perspective on self-management strategies

and this aim is divided into three general research questions:

1. What self-management strategies do patients consider to positively contribute

towards their recovery from depression? (chapter 2)

2. Which of these self-management strategies do patients actually use, which

do they perceive as being most helpful and are there differences according to

clinical and demographic characteristics? (chapter 3)

3. What do patients believe they can do themselves to cope with enduring

depression besides professional treatment? (chapter 4)

PART IILittle is known about what patients, carers and professionals, perceive as helpful, not-

helpful or even harmful in the treatment of depression. The aim of this part is to explore

the perspectives of those three groups with the following two general research questions:

4. What are the impeding, or even harmful, characteristics of professional treatment

for the recovery of depression from the patient’s perspective? (chapter 5)

5. What are helpful factors of professional treatment of depression from the

patient’s, carers and professional’s perspectives? (chapter 6)

20

Chapter 1

Outline of the thesis

PART I of this thesis consists of three chapters that explore the patient’s perspective on

depression self-management. In chapter 2, self-management strategies perceived helpful

in the recovery from depression are identified using a mixed-method design ‘concept

mapping’. In addition, in chapter 3, the actual use and perceived helpfulness of those

strategies are further studied with the use of a developed online self-report survey that

was distributed in a large sample of depressed patients. Also, common self-management

themes are identified and differences between patient clinical and demographic

characteristics in the perceived helpfulness of self-management strategies are studied.

In chapter 4, concept mapping is used again to explore self-management strategies that

are perceived helpful to cope with enduring depression besides professional treatment.

PART II contains two chapters that focus on the patient’s, carer’s and professional’s

perspectives on treatment. In chapter 5, impeding and hindering characteristics of

professional treatment from the patient’s perspectives are studied in-depth by means of

individual interviews with recovered depressed patients. In addition, chapter 6 describes

helpful factors of treatment from the perspectives of patients, carers and professionals,

using concept mapping in a large sample. Finally, the results of the different studies are

reviewed and discussed in chapter 7. This chapter also includes recommendations for

further research as well as practical implications.

21

General Introduction

1

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