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Treatment for Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) - Development and evaluation of a group cognitive-behavioural programme

Heller-Boersma, J. G. (2006). Treatment for Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) - Development and evaluation of a group cognitive-behavioural programme. (Unpublished Other thesis, City, University of London)


The broad aim of this thesis was to develop and evaluate an intervention addressing the psychological sequelae of MRKH. Given that MRKH is relatively rare, distressing to those affected, and has multiple and diverse psychosocial sequelae it was clear from the out-set that any intervention would have to be multi-faceted and complex. In other words I was less preoccupied with developing a ‘pure’ intervention consisting of one ‘active ingredient’ but rather wanted to give it ‘my best shot’ and devise an intervention which would be able to address a multitude of psychological difficulties arising in the context of MRKH.

A framework for the development and evaluation of complex health interventions has been published by the Medical Research Council (2002). Complex interventions are defined as those “built up from a number of components, which may act both independently and inter-dependently. The components usually include behaviours, parameters of behaviours (e g. frequency, timing), and methods of organizing and delivering those behaviours (e.g. type(s) of practitioner, setting and location). It is not easy precisely to define the “active ingredients” of a complex intervention.

The framework suggests a series of five phases of investigation in the development and evaluation of such interventions, ranging from a pre-clinical or theory phase, a model development phase (phase 1), an exploratory trial phase (phase 2), a definitive randomized controlled trial phase (phase 3) and a long-term implementation phase (phase 4). The work presented in the present thesis was conducted with the MRC framework in mind and covers the first three phases. A diagrammatic representation of the MRC framework and how the chapters of the present thesis map onto the different phases is given in figure 1.2. Given the time constraints of producing a thesis, by necessity some of the work on different phases has had to happen in parallel rather than strictly sequentially. The MRC framework acknowledges this point by saying that the framework “should not be read as an inflexible “to do list” but rather as advice to apply to the extent to which it is relevant at each stage” of a given project.

Chapters 2 and 3 both relate to the pre-clinical or theory phase. The aims in this phase are to assess theory and evidence that may help to identify the most promising kind of intervention and study design. In chapter 2,1 present a systematic review of the literature on psychological sequelae of MRKH addressing questions on the immediate and longer term psychological impact of being diagnosed with this condition and receiving treatment. Chapter 3 contains a narrative review of the literature on adolescent development of identity and sexual milestones with the aim of getting a better understanding of how discovery/diagnosis of MRKH affects normal development. Chapter 4 relates to the model development phase of the framework. Here I describe the development of a cognitive-behavioural model of adjustment to the diagnosis of MRKH and the treatment package based on this.

Chapter 5, relates to the exploratory trial phase of the MRC framework. The aims of this phase of the development of a complex intervention are to describe the constant and variable components of a replicable intervention and a feasible protocol for comparing the intervention to an appropriate alternative. The chapter details the (a) design of and setting for the study, (b) participants’ inclusion and exclusion criteria, (c) ethical considerations, and (d) recruitment. It also provides descriptions of (i) the intervention, (ii) outcome measures and assessments, (iii) sample size, (iv) randomization, and (v) method of statistical analysis chosen. It, finally, details the findings from the randomized controlled trial, outlining (a) the flow of participants through the study, (b) participants’ characteristics at baseline, reports on the (c) quantitative results of primary and secondary outcome measures (including a qualitative component), providing a (d) discussion of the limitations of the research, with suggestions and recommendations for further research, as well as outlining its strengths and noting the issued raised by the study.

Chapter 6 reports a cross-sectional comparison study of participants, non-participants and comparison women, which was run in parallel with the trial. Since very little is known from research into MRKH about the psychological functioning of women with the disorder, this chapter aims to identify how these women compare with other women in terms of levels of psychiatric problems, interpersonal problems or self-esteem. Moreover, this chapter aims to address the question of (a) how within the group of women with MRKH those who decide not to take up the offer of psychological treatment compare to those who do in terms of their psychological functioning and the related question of (b) what the characteristics of MRKH women who complete psychological treatment are and how do they compare to those of women who drop out from treatment. Finally, it addresses the question of (c) whether following psychological treatment the psychological functioning of women with MRKH becomes similar to that of women without the disorder.

Chapter 7, in closing, summarises the key findings of the research and provides an overarching discussion of the issues raised by the study and goes back to the MRC framework to discuss what the definitive RCT phase and the long-term implementation phase which are not covered in this thesis, might look like.

Publication Type: Thesis (Other)
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Departments: School of Health & Psychological Sciences > Psychology
School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses
Doctoral Theses
Text - Accepted Version
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