Review question/objective

What are the experiences of gynecological cancer patients who receive care from specialist nurses?

Background

Gynecological cancers account for approximately nine per cent of all cancers affecting women in Australia,1 and around 17 per cent worldwide owing to the significant burden of cervical cancer in developing countries.2 Despite advances in screening and treatment of gynecological cancers, the incidence of ovarian, uterine and cervical cancers is predicted to rise over the next five years.1 However, the effect that human papillomavirus (HPV) vaccination will have on new cervical cancer diagnoses, in countries where it is available, is unknown.1 With no definitive screening tests available to date, women continue to be diagnosed with ovarian cancer in its advanced stages. Consequently, the five-year survival rate for women with ovarian cancer is 43 per cent as compared to 68 per cent for women with other types of cancer.3 This poses a significant burden on individuals, families and the health system.

Women diagnosed with gynecological cancer have care needs, from the pre-diagnosis through to survivorship or end of life phases. The diagnostic period is one of great distress and where the informational needs of patients and relatives are particularly high.4-7 Treatment phases are characterized by heightened physical and psychosocial needs related to the side effects of treatment and life adjustment to a cancer diagnosis.8-10 Whilst treatment pathways differ for each of the gynecological cancers, a woman will typically have surgery followed by chemotherapy and/or radiotherapy. This initial treatment phase is usually complete within six months of diagnosis. Largely, the care needs of women with gynecological cancer are similar to those of all cancer sufferers,11 although no studies have compared these experiences. However, numerous studies have been conducted over the past few decades exploring the psychosexual needs of women with gynecological cancer, with more recent studies12-21 finding that these needs are significant and are often unmet. Improvements in diagnostics and treatment of gynecological cancers have seen recent research focused on the increasing needs of women in the survivorship phase. Several studies and reviews have concurred that the need to deal with the fear of cancer recurrence is common and often an unmet need of women in the post-treatment period,22-26 along with concerns about those closest to them,24,27 uncertainty about the future,25,27 anxiety,25,27 and fatigue.23,24,27,28 Studies have also shown that gynecological cancer patients express a desire for a patient-involved, collaborative approach to post-treatment care.22,25,27 Thus, the care needs of women with gynecological cancer are complex and change over the course of their cancer journey. Specialist nurses are well positioned to play a role in meeting the needs of women with gynecological cancer although, to date, their role and scope of practice have not been well defined.

The role of specialist nurses in cancer care has been evolving over more than 20 years. Led by breast cancer specialist nurses, the role has been formalized and standardized for breast and prostate cancer in Australia in the form of competency standards and minimum education requirements.29,30 In gynecological oncology, specialist nurses are considered an important part of the multidisciplinary team recommended to provide optimal care for women with gynecological cancer.31,32 Yet the practice of the specialist nurse in gynecological oncology throughout Australia is guided by generic frameworks and guidelines for cancer nursing care.11,33 There are no specific competency standards, defining statements or minimum education and experience requirements relating to the role of specialist nurses in gynecological oncology. It is necessary, however, for the purpose of creating the inclusion criteria of this review, to outline the role of the specialist nurse in gynecological oncology. In order to do this, consideration must be given to literature relating to specialist nurse roles in general and existing competency standards relating to breast and prostate cancer specialist nursing. The National Professional Development Framework for Cancer Nursing declares that there are no national educational standards nor minimum experience requirements for specialist nurses in Australia, but qualifies that meeting the competency standards outlined in the framework would usually require further education at the postgraduate level.33 This is reiterated by the Australian prostate cancer specialist nurses competency standards.30 Specialist nurses in the United Kingdom are likewise not required to have a qualification beyond that required to become a registered nurse but may require an unspecified period of experience for employment in some roles.34 Conversely, specialist breast cancer nurses in Australia must hold a minimum of a graduate diploma in the specialty of cancer nursing29 which is surpassed in the United States where specialist nurses require a minimum of masters level education for endorsement.35 However neither of these documents stipulate the years of experience required to fulfill the role. As there is no consensus within Australia and beyond on minimum education and experience requirements of a specialist nurse in gynecological-oncology, the proposed review will include nurses who are considered to fulfil the functions of the specialist nurse role. The specialist nurse may be differentiated from an experienced nurse in that they are specifically employed in a role that includes functions such as coordinator of care, collaborator within the multidisciplinary team, clinical expert, staff and patient educator, researcher and strategic planner.29,30,33-36 Such a nurse may be employed under various job titles, such as clinical nurse specialist, cancer nurse consultant, cancer care coordinator, specialist cancer nurse, liaison nurse, nurse navigator or advanced practice nurse, depending on the country and setting in which they are employed. This systematic review aims to aggregate evidence pertaining to the patient's experience of specialist nursing in gynecological oncology. As key stakeholders, understanding the patient's experience of care is an important step in better defining the role and scope of practice of specialist nurses in gynecological oncology in Australia.

In 2014, a quantitative systematic review was conducted to determine the efficacy of specialist nurses in gynecological oncology settings.37 The review by Cook, McIntyre and Recoche evaluated the effects of interventions by specialist nurses on quality of life, satisfaction with care and psychological outcomes of women with gynecological cancer.37 The psychological outcomes considered were uncertainty, depression, anxiety, confusion, anger, self-esteem, body image, distress and sense of coherence.37 The review by Cook et al.37 also categorized interventions according to four main domains of care: informational and educational; social, emotional and psychological; physical and practical; and psychosexual, and considered the effectiveness of each. Likewise, the effects of specialist nurse interventions when delivered at different points on the continuum of care, via different modes of delivery or at varying intensity, frequency or duration, were also considered in the review by Cook et al.37 The review included six randomized controlled trials and three non-randomized quantitative studies which varied greatly in their study design and methodological quality thus preventing a meta-analysis of the findings. The findings of the review were that interventions involving comprehensive or individualized care across all care domains positively affected quality of life, patient satisfaction, uncertainty and sense of coherence.37 However, the authors of the review qualified that variability in the methodological quality of the included studies made generalization of the findings difficult.37 Timing of care was also shown to be important, with interventions conducted between the point of diagnosis and the end of treatment found to be the most effective. The 2014 review by Cook et al. excluded the qualitative arms of included studies and other relevant qualitative evidence on the basis of resource constraints; however it acknowledged that such evidence must also be evaluated in order to fully comprehend how women with gynecological cancer experience the care of specialist nurses. A preliminary search of the relevant databases for existing systematic reviews on this topic, including the JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Library, CINAHL, PubMed and PROSPERO, revealed that only the abovementioned review has been conducted.37 This highlights the need to undertake a systematic review to synthesize the existing qualitative evidence in order to fully understand how women with gynecological cancer experience the care of specialist nurses. This review is anticipated to provide an added dimension to the Cook et al, review by exploring women's experience of specialist nursing care that may not otherwise be captured through quantitative measures such as quality of life and psychological outcomes.

Inclusion criteria

Types of participants

This review will consider studies with a focus on women with gynecological cancer who have been cared for by a specialist nurse. For the purpose of this review, gynecological cancer is a collective term used to refer to cancers of the ovary, endometrium, uterus, cervix, vagina, fallopian tubes and vulva. This review will consider studies of women with gynecological cancer at any point on the continuum of care from pre-diagnosis to survivorship or end of life, including those with a recurrence of the disease. Care from a specialist nurse may have taken place at any point on the continuum of care and there is no limit to the duration of care received for inclusion in this review.

Phenomena of interest

This review will consider studies that explore how women with gynecological cancer experience the care and interventions of specialist nurses. This review will not include studies where care is provided by nurses other than those employed in a specialist nurse role. The job title of specialist nurses may include: clinical nurse specialist, cancer nurse consultant, cancer care coordinator, specialist cancer nurse, liaison nurse or advanced practice nurse, depending on the country and setting in which they are employed. This review will exclude studies with nurses who may be experienced in the care of women with gynecological cancer but are not employed in a specialist role. Likewise, studies including women cared for by a nurse practitioner will be excluded, as the nurse practitioner role is considered a more advanced and specific role than that of the specialist nurse as outlined in the National Education Framework Cancer Nursing.33

Context

The review will consider studies conducted in any country providing that the study has been reported in English. This review will consider studies conducted in any setting including, but not limited to, acute hospitals, outpatient/ambulatory clinics, chemotherapy or radiotherapy units, support groups, palliative care units or the patient's home.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. This review will also consider the qualitative arms of mixed method studies.

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review as the reviewers comprehend English only. Studies published between 1995 and 2015 will be considered for inclusion in this review, given that the role of specialist nurses first emerged in oncology approximately 20 years ago.

The databases to be searched include:

PubMed, EMBASE, CINAHL, PsycINFO, AMED, and Scopus.

The search for unpublished studies will include:

ProQuest Dissertations and Theses, Dissertation abstracts, Thesis Canada Portal, Networked Digital Library of Theses and Dissertations (NDLTD) and searching of relevant institutions' libraries' online public access catalogues such as Caresearch.

Initial keywords to be used will be:

gyn#ecological cancer, female genital neoplasm, gyn#ecological malignancy, gyn#ecological tumo#r, cervical cancer, cervical neoplasm, cervical malignancy, cervical tumo#r, ovarian cancer, ovarian neoplasm, ovarian malignancy, ovarian tumo#r, uterine cancer, uterine neoplasm, uterine malignancy, uterine tumo#r, endometrial cancer, endometrial neoplasm, endometrial malignancy, endometrial tumo#r, vulva* cancer, vulva* neoplasm, vulva* malignancy, vulva* tumo#r, vaginal cancer, vaginal neoplasm, vaginal malignancy, vaginal tumo#r, fallopian tube cancer, fallopian tube neoplasm, fallopian tube malignancy, fallopian tube tumo#r, specialist nurs*, liaison nurs*, nurs* liaison, clinical nurs* specialist, cancer n urs*, cancer nurs* consultant, nurs* consultant, consultant nurs*, advance* practice nurs*, advance* nurs* practice, cancer care coordinat*, oncolog* nurs*, gyn#ecologic* nurs*. Appropriate MeSH terms and subject headings will also be utilized in the search strategy for the databases that possess such function.

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved with a third reviewer.

Data extraction

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). Data extraction will be completed independently by two reviewers. A third reviewer will independently perform data extraction in the event that there are discrepancies in the data extracted by the initial two reviewers. The data extracted will include specific details about the phenomena of interest, populations, study methods and specific objectives.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.

Conflicts of interest

The authors have no conflicts of interest to declare.

References